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undecided - mastecomy or lumpectomy
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undecided - mastecomy or lumpectomy

I was diagnosed with stage 1 breast cancer. I have 1 mass that is 3.5 and a cyst that is 2.5 - not in the lymph nodes - just got back the BRAC test - everything good there. My Doctor and husband are both pushing for a lumpectomy and radiation. I feel that being so young (43) that a mastecomy is right since I have so long to live that I don't want to have to worry about it coming back. Plus if it does come back - if will come off anyway.
Both my husband and Doctor feel that least invasive, no real time off of work... I work with my husband in our own business and also cut hair for a living..my husband thinks, ok work during the day, get radiation in the evening, life continues as normal, sleep all night. Still do housework, dinners, etc. No big difference in life.
I guess my question is, do I make the decision with MY gut or follow what the Doctor reccommmend, since he IS the Specialist in this? AND is a regular life possible during radiation treatments?
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106 Comments
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The decision is ultimately YOURS, since it is your body, your disease, your life.

With Stage 1, breast-conserving surgery could be a viable option, IF you have large enough breasts to have an acceptable cosmetic result after removal of a mass of that size. But the type (ER/PR/HER2 status) and grade (nonaggresive or aggressive) of your tumor are other features of your case that you might want to factor into the decision.

You might want to see a second opinion surgeon, and tell him/her you want to discuss primarily  what is BEST for you in the long run, NOT just  what is most convenient in terms of the family business and being able to "do your household duties." (BTW, what planet does your huband live on? Is he usually this insensitive to your needs?)

Relatively normal life is possible during radiation txs, but for standard radiation you wouldl have daily appts for several weeks, probably wont  want to wear a bra due to possible skin irritation (like a sunburn, or for some people, worse), and can expect to feel tired. Many peolpe continue to work, but it might be exhausting to work in the business, cut hair, cook and clean, fit in evening appts, and try to get enough sleep to start the marathon all over the next day...

Best wishes...
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Thanks for your reply.
No my husband really isn't as insensitive as it seems. This is his FIRST ever cancer in the family - he's really not sure HOW to handle things I think...he really is being strong - sometimes I think TOO strong trying not to make me go crazy through all of this..
That said, I am smaller in size, just barely a "B" cup, so my thoughts are  it they take out much, I will feel mutilated...but I my Dr. keeps saying things like when it it this small, and such a little mass...blah blah blah... it makes me second guess myself, since he is the DR. !
They told me it was invasive ductal cell carcinoma - stage 1... whatever THAT means!
I guess what I am thinking is, if I have the lumpectomy, I then need to have 6 weeks of radiation, so I am feeling kind of crappy for 6 weeks, and my "girls" will be yucky looking...well at least one of them... but if I have the mastecomy, I will be feeling crappy for up to 6 weeks, probably not that long since the holidays are on the way! but the "girls" will be pretty, since they will HAVE to make them match and I won't need radiation, so it will just be the recovery from the surgery mostly. and NO cancer comeback
Either way I look at for the next 6 weeks, my life will be different.... why not get something good out of it....pretty "girls"!
It seems everywhere I look for what it is going to be like for those 6 weeks after each of the operations, I haven't really been able to find answers. I know everyone is different, but a basic list of you can't do this, you won't be able to do that, I haven't found. And I think asking the DR. is crazy, cuz he hasn't gone through this, how does he know? And I think I need to find this list somewhere so I can better make this decision
Thanks,
Lisa
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Glad to hear your husband is generally more emotionally available! Dx with cancer is a crisis, which can bring out the best or the worst (or some of each) in all the people affected by it...

I am kind of surprised your surgeon referred to it as "such a little mass." IF the measurements you gave were in cm, as I assumed, a 3.5 cm tumor would be almost  one and a half inches in diameter, plus they need to take extra tissue all around it to be sure they get clean ( malignancy-free) margins.  However, if my assumption was incorrect, and the measurements were actually in mm, then it truly would be "a little thing"--about 1/8 of an inch--and that would be a whole different proposition!

Since you feel "pushed"--or perhaps a bit itimidated?--by your surgeon, I do think a second opinion, hopefully with someone with whom you would feel more rapport and  be able to have a good back-and-forth discussion, might be helpful.

By the way, if you do decide on a mastectomy with immediate reconstruction, be sure to research the subject, and your plastic surgeon, thoroughly, as there are many different types of reconstructions, and different doctors have different levels of skills in performing them. I will add another post with a link to an excellent thread that describes the many types of reconstructions that can be considered.

I also think it would be good tfor you to learn more about your cancer. IDC just means you have the most common type that women are diagnosed with--cancer originating in a duct, but infiltrating, or invading, through the walls of the duct into the adjacent area. of breast tissue. The additonal factors about it that I mentioned above are impotant
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(Sorry about the typos and abrupt ending to my previous post. I had planned to say more, and to edit it, but got ahead of myself and posted too fast, due to thinking about  locating  the link I promised you...)


Here is the link to excellent information posted by one of our members, SueYoung55:

http://www.medhelp.org/posts/Breast-Cancer/Trans-flap-vs-implants/show/1308880
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p.s. You should also be aware that breast cancer CAN come back after a mastectomy...
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Here is a link to a thread in the BC Expert Forum, by someone also trying to make a decision between mastectomy and lumpectomy:

http://www.medhelp.org/posts/Breast-Cancer/Lumpectomy-vs-Bilateral-Mastectomy/show/1332287
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Hi everyone,
I just wanted tot ell you that I have decided on getting a lumpectomy and all of the debating that was going on in my head and heart is now gone. I wanted to tell you why, after being so set on a mastecomy, I made this decision, in hopes that it may help someone else. It is such a tough decision, and there is so much to learn, I was making myself crazy!
In weighing out my options, I looked at the recovery time. To me, this was a very important issue. To me, I wanted this part of my life over as quick as possible. I wanted to be able to move on as soon as I could. SO, after having my doctor answer 2 PAGES of questions, I decided on the lumpectomy with possible reconstruction if I thought I needed it. He assured me that he would make my breast look as nice as he could while taking out what he needed.
I then said what I said when I first felt the lump..... I 'm giving it to God, and he  can do what he wishes with my decision.
I am not very religious, but I do feel that God is all powerful, and will take care of me. So I am taking back the - it is what it is attitude, I will take it one day at a time. If I need to sleep cuz I am sick I will, and not feel guilty . I will work when I can - if I lose my job, so be it. My family will be fine while I am sick, I have readied my house (been cleaning it like a crazy!) and my freezer ( I have stocked it with premade dinners!). I am ready to get well!
I hope this will help someone else maybe look at thier decision easier.
My surgery is scheduled for this Thursday, with  he said maybe a month of recovery, then 6 weeks of radiation........ If you look at the calender, you will see that I am going to be taking this right through the Christmas holiday, which is what I REALLY didn't want to do,but, I will at least have the month of November to get ready for it!....See everything for a reason. I may be sick for the Holiday, but I will be ready for them!!!!!
I will keep you posted as how thing went or are going

Thanks you much,
Lisa
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Hi Lisa,

It is great to hear that you have reached a decision with which you feel comfortable!

I hope everything goes well for you, and please do keep us posted all along the way.

Warm regards,
bluebutterfly
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I was pressured by my doctor to get a lumpectomy when my gut told me to get bilateral mastectomies to get as much breast tissue off me as possible. After a diagnostic MRI was done and my 1.5 cm mass ended up being 10 cm she finally admitted that lumpectomy wasn't an option.

What was the results of your biopsy? Are ER, PR and/or HER2 Positive or negative?
Each of those can be negative or positive. I'd want the answer to those questions before I'd make a decision at your young age.

Best wishes :)
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Ps.. I stopped for my radiation treatments every morning at 6am and went straight to work. It only takes about 20 minutes or so for the radiation treatments. You can do this :)
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Wow, I was under the impression that radiations makes you "dog tired" - everyone I have spoken to said that they just existed during treatments. Eating, sleeping and treatments is what I have been told by some...O hope that I can ge SOME work done during!
Thanks for your encouragement!
Lisa
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Well, my surgery went well. I really didn't like the anesthesia though.... I felt a little pushed out of the hospital, as they started late, then it took longer than expected, and the nurses wanted to GO HOME! I don't really remember that first night after the surgery.
My scars look good, and I have only taken 1 pain pill (half at a time) as there has been no pain! Three days after surgery, and I am doing the laundry with no help!!!! So glad to be up and around!
The Doctor did take out the cyst that had me so concerned, but he said was "only" a cyst....we will see when all of the tests come back!
I have an appointment with him next Wednesday, adn I guess he will then tell me what comes next.
I am glad that I went with the lumpectomy, because, I don't like not being "in control" and the anesthesia made me feel like I had no control, so I probably wouldn't want to go through this again!
Smiles all over me face though, knowing I am on my way back to being ME!
Lisa
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Glad to hear your surgery went so well, and that you are already able to be active!

Keep us posted as you continue your BC journey.

Best wishes...

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I posted this elsewhere, but was told to (thank you) put it here....which makes sense now! I am not sure if I am supposed to move the replys though?
Thansk,Lisa

my results are in- can you help
by popvendr321, Nov 10, 2010 10:36AM
Ok so now I have had my surgery, went to the doctor for a follow up, and I have the results from the test.... but I don't understand them... I know this
2 cm mass was removed along with what he was calling "just a cyst" - it took longer than he expected cuz he went deeper in
not in the nodes
her 2 (+)
er (+)
pr (+)

When I asked what this all means, they just say,  these rhings will determine the treatment. Well OK  I get that BUT what does it mean? Do these things mean it is a more dangerous type of cancer, more recurring type of cancer, etc.... should I have gone with a mastectomy instead of lumpectomy? Is that an option now before I start treatment? And will that matter?
I just really want to understand it more than they are giving me I guess. If anyone can help any info - good bad or ugly! I like to know ahead of time not when I am in the doctors office and they try to get me to make decisions.
Thanks in advance,
Lisa
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Thanks, Lisa!

I've copied my answer here for continuity:

1. A 2 cm mass is fairly large (approaching an inch in diameter), At 2cm, it is on the upper limit of the T1 category in the TNM classifcation system for determining the Stage of a person's BC. Above 2cm it would be a T2. (This probably doesn't mean too much to you, but as your doctor indicated, it is used in tx planning.)

2.  ER and PR are parts of your "hormone receptor status" and ER+/PR+ is considered favorable, because there are targeted treatments (tamoxifen and AIs) for it which can significantly reduce your risk for recurrence.

3. The fact that you have no lymph node involvement (meaning cancer cells appear not to have spread from your tumor to the axillary lymph nodes) is another good-news finding.

4. HER2+ staus is a concern, because this indicates an aggressive type of BC with an increased risk of recurrence. For this reason, the latest view is that even small HER2+ tumors call for tx with both chemo and Herceptin (a targeted tx for HER2+ BC).

"From the San Antonio Breast Conference in December, new data shows a higher than predicted rate of breast cancer recurrence even with very small breast cancers that are HER2 positive. The data is from the first large study to analyze early-stage breast cancer patients with HER2 positive tumors one centimeter or smaller. All these women would benefit from adjuvant Trastuzumab, also known as Herceptin, (for one year, the standard in America) -- along with adjuvant chemotherapy. This represents a shift in the way women with early-stage HER2 positive breast cancer should be assessed for risk of recurrence and considered for treatment, according to the study's author."

4. All of this does not mean you made the "wrong choice" in having a lumpectomy, because in cases where either approach was an option, studies have not found a difference in survival rate related to which surgery was chosen by the patient. However, many women are still choosing mastectomies even when they are not considered medically necessary. These are the most common reasons given for that choice:
1. If no spread to nodes, then didn't need to go through radiation if took mast. route. 2.  Wanted to make sure it was completely gone.  3. Esp. with older women, some were more concerned about survival and the strain and inconvenience of returning repeatedly for radiation (esp. where access to care and poverty were issues), than with appearance. 4. Even with younger women, if a person's breasts are on the small side, a lumpectomy for a larger growth may not leave a cosmetically pleasing result, making mast. and reconstructive surgery preferable.

A mastectomy is still an option if that is what you want, but the best timing for it  is something you would best discuss with your treatment team.

Best wishes,
bluebutterfly
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After printing out your post, I began looking at the medications, and OMG - the side effects of them, and WOW my brain hurts!
some of the sides are heart problems...really??? on top of cancer, I now get to deal with heart problems too??? Is there a way to find medicines that will cure the cancer, but not kill the patient in the mean time? OR am I  loooking to much into this?
Thanks again,
Lisa
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Some of these medications are very powerful--powerful enough to kill cancer!--and therefore are likely to have side effects. (But when it comes down to facing the risk of side effects versus facing the results of untreated or undertreated breast cancer, it's usually a "no-brainer" ...)

However, most of the more serious side effects are quite rare, and not everyone gets all of the more common side effects that are listed.   Oncologists take many precautions to protect pts undergoing chemo--heart tests before one chemo that can (rarely) affect the heart, premedications to prevent strong reactions to the drugs,  followup medication to prevent blood counts from dropping too low, etc.  

Some people (including some of our members who have posted about it) have a rough time, and others get through it fairly easily. For someone close to me, there were no serious side effects at all, despite all of our worrying  ahead of time! The most prominent side effects were hair loss and discolored fingernails and toenails, both of which were reversible.

Also, please keep in mind that you haven't learned yet what your tx team may recommended in YOUR case. (You stated that you wanted as much info as possible--"good, bad, or ugly"--so I outlined what COULD be part of your tx, not necessarily what WILL be.)

And whatever you may be facing, some of the best advice I've heard is, "Don't get ahead of yourself. Just take it one step at a time and you'll get though it."


Warm regards,
bluebutterfly
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Thank you so much for all of the information you have given to me and others. It is so helpful  to me. I am trying not to put the horse before the cart so to speak, but I guess I wanted to know what could happen...unfortunately now I am scareing myself, so I am going stop reading the side effects!

I do have a couple of more questions, if yoo don't mind...
IF the surgery got the whole mass out, which is what my dr said, and it was her2 pos, then they do radiaton to get that last little bugger that wanted to stay in me, ....how does it come back if there is nothing to "remake" the cancer?

2nd question - I know each breast is in of itself its own entity so to speak.... how come my right breast now seems different? In the shower, I noticed it "feels" diffeerent.... a little heavier, fuller, and more lumpy? I have been told that it is fiberous (not sure if that is th right word).... do you think I should make mention of this to the dr. when I see them... should I get it checked out before? I am not sure when they do the mammogram next, if it is now before treatment or after treatment.

I 'm tellin you, Tuesday can't come quick enough for me. I am crawling out of my skin waiting to find out what and when the rest of my journey is.

Thanks so much,
Lisa
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Thank you for your kind comment; it is always nice to hear that our information has been helpful.

1. Radiation is a local tx, which can only attack the cancer cells directly in the radiated area.  Chemo is a systemic tx, which can reach anywhere in your body on its "search and destroy mission," and is given to attack any possible stray malignant cells, including microinvasions too small to be detected, that could have escaped from the original site and  could otherwise lead to a spread or recurrence. (As I've said, I don't know if it will be recommended in you case.)

2. Yes, anytime you notice changes in your breasts, you should report it to your doctors. Often such changes are benign, but esp. when someone has already been dx with BC, it's wise to be doubly cautious.

I hope you doctor's appt. goes well, and please come back and tell us what you find out about "the rest of your journey."

bb

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You wrote: IF the surgery got the whole mass out, which is what my dr said, and it was her2 pos, then they do radiaton to get that last little bugger that wanted to stay in me, ....how does it come back if there is nothing to "remake" the cancer?

As long as you have breast tissue you have a risk for re-occurence or a new breast cancer. With a mastectomy, most breast tissue is removed thereby reducing your risk of another cancer in the breast. Double mastectomy removes even more risk.

There is no cure for breast cancer, just surveillance, surgery, treatment and hopefully, remission with no evidence of disease. Hold tight, you're going to handle all of this just fine.

Best wishes.


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Ok, so I went to the Onocologist today - VERY nice doctors! Then plan is chemo,(6 x every 3 weeks) heceptin, radiation (5 days a week for 6 weeks and then tamoxifen. I was all concerned abouth the timing of all of this, with the holidays coming up and all...... then he said we will start treatment JANUARY 4th!
At first I was all for it because Christmas is HUGE in my family. Then I told my two teenage daughters, my youngest one burst in to heavy tears( very unlike her) she thinks we should start now - and too bad if we have to miss some of the partying, she just wants mommy better! My older daughter is like isn't waiting the wrong thing to do since it grew so fast, arent they afraid it will come right back?
NOW  I am second guessing the thought of waiting until after the holidays....MY dr said we could do it either way , start now or later. My younger daughter said, if it is going to take almost a year to finsh treatment, we will be dealing with this for 2 Christmases, but if you start now, you will be way done by NEXT Chirstmas..........
OOOOOOOOOHHHHHHHHHH so many decisions. Any ideas?
Thanks,
Lisa
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Oh yeah forgot to tell you.... I asked about my "good" breast, and my dr said keep checking it so that I can learn what is right for me, but since I am just coming off of the Depo shot ( 1st time in 15 years!) my breasts may change some.
When the dr told me I had to get off the Depo shot - I jokingly told him - - oh boy, now you are killing me! He didn't think it was a funny comment, buuuuuuuuut I haven't had a period in 15 years, and I am NOT looking forward to THAT coming back! LOL
When talking to my Dr. this morning, he was a little taken back about my question about birth control for now during my treatments, he really didn't answer what I am supposed to do ther than - DON'T GET PREGNANT! I was like - no, duh!
Any ideas about that part of life that I should know?

Lisa
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Hi again Lisa,

So glad to hear you felt comfortable with the oncologist!

The decision about when to start your tx is of course up to you, but many people want to start as soon as possible, to "hit it fast and hit it hard." It also might be nice to look forward to having it all behind you in time for next year's holiday season.

As far as bith control. the old standbys of diaphragm and condoms are possibilities, or if you've completed your family, it might be a good time to consider  permanent freedom from  accidental pregnacy though vasectomy or tubal ligation.

bb
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I changed my mind and called the DR. Friday to tell him I wanted to do the Chemo now instead of later ........... I have an appointment Tuesday to start.
Now this is really getting "real" to me. With everything I know, and with all who have gone before me, I am still scared! All of the what ifs are coming to mind. Pre chemo jitters I guess.
I will let you know how I do!
Happy Thanksgiving to all
Lisa
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Hi Lisa,

Your pre-chemo jitters are completely normal. Try to have as good weekend as possible with your family.

I hope it goes well for you on Tuesday! Someone close to me was very worried before her first chemo tx, but called me that evening saying, "It was a piece of cake!" (The whole series wasn't quite that easy, but far more tolerable than she expected.)

We are here if you need us...

Warm regards,
bb
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Ok so I had my first treatment, it wasn't as bad as I was imagining.... kind of boring actually! I brought a lot of things to do with me, I started my Christmas cards, and did some paper work! The nurses thought it was funny that I was doing the cards, but I thought hey if I gotta sit around, make it productive right?
The nurses are SO GREAT! They really are a very caring group... my husband brought someting up to me that I didn't even think of and I thought it was funny.... I had a nurse who was really complaining about her sore back and she really did just keep complaining about how much it hurt, and blah blah blah..... (he stayed with me for about an hour before I told him to leave!) but he said......... with everyone there for chemo... going through the whole cancer experience, how can she complain about having a sore back? I didn't even think of that, it was funny, because there I was feeling sorry for her, and in his eyes, she had NO right to complain... I thought it was very caring of him to think about it ithat way..... it took a lot of him not to yell at her!
Just wanted to share that - hope it makes someone laugh as it did me!
Have a great day!
Lisa
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I''m glad to hear your first treatment was better than you expected.

Thanks for keeping us updated on your progress!

bb
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So last week I went out and bought a few really pretty scarves, and the nice girl that I got them from is a survivor with LOTS of information..... she told me to shave my head when I got a horrific headache, and that would take care of the pain. I kind of laughed it off....................Moday, my hair started to come out - a VERY bad day for me...then on Wednesday, my head was hurting all day at work, and by the time I got home, I had to take a migraine aspirin it hurt so bad! So after I woke up, my daughter and I had a hair cutting party. Mind you that I wear my hair long past my shoulders! And dyed red (my hair is naturally very dark!) SO we cut it short, and took some pictures, then we put it into a mohawk and spiked it, and took some pictures, then we shaved it off and took some pictures!!! WE had such a good time messing around, that it really didn;t bother me as much as I thought! It was worse in the brush than on the floor!
I LOVE my new look and it feels so funny! I should have done this years ago!!! It is totally liberating! Just thought I would share!
Lisa
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Yours is a wonderful example of taking lemons and making lemonade!

Thanks for sharing it with us.

Warm regards,
bb
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I hope that everyone has Happy, HEALTHY Holidays! May the new year only bring good test results, and bad hair days! Keep smiling  as this too shall pass and brighter skies are on their way!
Thanks for all of the help I have received this year and thanks for the help to come.
Lisa
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Thanks, Lisa!

Hope you and your family have wonderful holidays (even though you moved right into tx) and have visions of even better ones next year dancing in your heads!

bluebutterfly
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Happy New Year to you!
Well, I have had now my 3rd chemo of 6, and boy is this one different. It has been more than a week since, and I am still not feeling back to being me. Still a little on the tingly side, mouth still yucky and this treatment added some effects. Not sure what is normal. But I really can't wait til this is over
Keeping my chin up though - trying to remember that it is all in my best interest!
Just wanted to poke in and say hi though!
Hope you have a good day!

Lisa
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Hi Lisa,

Thanks for "popping in," popvendr! :-)  

You were in my thoughts last night, and I planned to send you a note today, to check how things are going.

I'm sorry it's getting rougher, but glad to hear you've reached the 1/2 mark re chemo!

You've maintained such a good attitude and such determination since you got past the shock of being dx with this terrible disease; I'm really impressed.

Hang in there,
bb
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I got so tickled at the hair cutting/photo session with your daughter! I wish I had thought of that! My best friend shaved my head for me. Now I wish I had painted my hair purple or yellow or green and taken photo's!

You seem to be doing pretty darned good through chemo. Awesome! You can do this... you're getting closer to the donewithchemo finish line! :)
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Hi Everyone,
I am now heading to my 5th of 6 treatments........... blllllech! Can't wait to get through these chemo treatments and onto the easier ones!
The reason I am writing today is - my "girls"!  The breast that had the cancer, looks good where they cut and all, nut it IS a little mis - shapen. my headlights are facing in opposite directions now, and it bothers me some, and the shape, size and height are different. I am not large by any means (38 between a b and a c cup) I have never gone braless, but summer is coming, and I am concerned about how I am going to look in a bathing suit. Is it too late to look into some kind of reconstruction? And would that be part of my treatment - and would they do the other one to match? AND if all of this is possible, can they do that surgery where they suck the fat from my belly and just move it up top without moving any muscle? In the beginning they told me I didn't have enough fat, but since my dx, I have GAINED 10 pounds! I have an appointment next Tuesday for Chemo, I am going to ask them then, but I was wondering what you all thought.
Thanks,
Lisa
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Reconstruction certainly is an option and certainly is available to you. I want to clarify... they don't "suck" fat up though that would be wonderful if they did! :)

Any of the muscle sparing reconstruction options are available to you. DIEP, SIEP, SGAP, IGAP, TUG. Most plastic surgeons don't offer them because they don't do them. Honestly, this is the type of surgeon you would want to really research, one who does them every day and has for years. I can give you names and locations but it will require you to travel for surgery, like I did. And it would be well worth your time and effort to do so. As for the beach? If you look for a bandeau top bathing suit no one will notice you've had surgery :)

Please send me a private message if you've like to talk about reconstruction. In the mean time, I've attached a list I did a while back about what is available..  Ps.. you will find that chemo doctors aren't really well versed in all the options out there as that's not their specialty. I was the first patient at my oncology group that had ever had DIEP reconstruction and I live in a major city with major hospitals.

http://www.medhelp.org/posts/Breast-Cancer/Trans-flap-vs-implants/show/1308880?personal_page_id=384050
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OK here is another question
I was in the shower yesterday and found a lump in my good breast.... it was rather large - like an inch across. and it hurt when I pressed on it - FREAKED me out - then this morning, I couldn't find it, then I did, then I didn't .............. is someone playing tricks on me, or should I call the doctor in the morning and get it checked out? I will check here later to see if someone responded.
Thanks,
Lisa
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That happened to me too on my first visit to the gyne after chemo. I cried from sheer devastation. Get it checked but don't worry about it until they tell you to. I had two masses in my remaining breast at time of 2nd mastectomy.

Best wishes :)
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Hi;
I just read your entire journey and am touched by your strength. I just prayed for you that the healing name of Jesus takes the worry and entire disease from you. With my sincerest prayers.
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Thank you for your thoughts and prayers - as always they are needed and appreciated!
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Thanks for your response.... I am just so overwhelmed.... here I am thinking  ALMOST DONE and now this - - the strange thing I don't understand is why the disappearing act? I feel it sometimes, but not always - I am just glad it is Sunday and I can call tomorrow!

I had two masses in my remaining breast at time of 2nd mastectomy.
----- Does this mean that after you had one breast taken off - they found more in the other and you had to start all over again?
Thanks for your help.
Lisa
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Hi Lisa,

No, I had a 10 cm mass in my right breast. I had to do chemo first, then had first mastectomy, then more chemo and radiation to finish up my treatment.

One month later a lump was found in remaining breast. And as I said, by the time I got it removed (mastectomy on right side) there were two lumps in it, both benign. I chose the second mastectomy to reduce my odds of having to go through this again. I had immediate reconstruction at the time of my second mastectomy on both sides since I'd gone with having one breast for a year & a half. Now I have a perfectly matched set and it's made from my tummy fat and skin and isn't prone to breast cancer :)

The lump you're feeling periodically is most likely nothing especially since you've been busy in treatment.

When you asked at the beginning of the post about lumpectomy vs mastectomy.. my answer is almost always mastectomy so that if you've had the diagnosis once, hopefully you'll never hear those words again.

Hang in there, you're going to be fine.
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Sorry to hear you're dealing with a new worry; hope turns out okay!

Please keep us posted...

Warm regards,
bb
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Hi everyone,
I got the results back - they said it is a cyst - but they said it was an 1 & 1/4 inches! They want to watch it and look again in 6 months..........of course I am NOT alright with that. My question is this - if you cannot tell if a mass is cancerous without a biopsy, then how can you tell a cyst is not cancerous without a biopsy? This is a question I will be asking tomorrow when I go in for chemo! I really am confused on that. I don't usually accept "because I say so" as an answer....so I am going to question them about it. My husband's Aunt had a "cyst" that they wanted to watch, it ended up being stage 3 cancer! (for which she is a 10 year survivor - thanks to good doctors!) I just don't want to wait and see what happens, since it is already so big, it will become stage 2 quickly if it is cancerous. I don't understand why if I have already been diagnosed in the other breast, why they wouldn't want to biopsy it  and be safe instead of sorry? Maybe I am just being silly, but I have learned through this experience to question the "professionals"
Thanks for listening,
Lisa
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Glad to hear it's apparently good news!

An ultrasound can usually distinguish a cyst (fluid-filled sack) from a solid tumor, and sometimes they attempt to aspriate fluid from it, to confirm that it is a cyst, and benign.

Solid tumors must be biopsied to be 100% sure what they are, but even then there are characteristics that suggest when they are probably benign and will just be watched, or more suspicious-looking and need immediate biopsy.

If they have labeled this a simple cyst, the first step you might ask for is to aspirate some of its fluid. If they think it's a complex cyst (harder to get any fluid because it has "partitions"), you could insist on a biopsy, if because of your  recent  hx and  your aunt's experience, you don't want to wait.


Best wishes,
bb
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Sorry, your husband's aunt.
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I went in for treatment today and they were like - it is just a cyst, we are going to just watch it....... I told them that I was not happy with that answer, so they made an appointment with the surgeon to have him look at it and decide what to do. I asked why they couldn't just aspirate it, they had no answer, so next Tuesday I go to the surgeon to fight it out with him! This is the same surgeon who didn't want to take out the l st cyst I had..... I don't understand why they just want to wait and see on these things when I have already have cancer? Why take the chance? At the very least - biopsy it.
I will keep you up to date as it goes.
Thanks,
Lisa
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Ok so I went tot the doctor yesterday, and he said it is just a cyst - leave it alone, look again in 3 months! So that is a good thing, but it is still nerve wracking! I hate the wait and see.......BUT oh well
Everyone have a good day!
Lisa
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Glad you got some good news!

It's difficult for anyone, after being dx with BC, not to worry about any new breast finding! But knowing your hx, I'm sure your doctor would be very vigilant in regard to anything that looked at all suspicious...

Sounds like you'll soon be "heading down the home stretch" with your tx--yay!

Hang in there,
bb
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Ok I have a question that I'm sure hasn't been asked........
Now that I have had my surgery,and am in treatment.......how do I say it
I have breast cancer,
or I am a survivor

My daughter was teasing with me the other day - and I told her not to pick on me I have cancer..she said - oh don't play that card, you had the surgery and you don't HAVE breast cancer anymore!  We laughed, but what is the right way to say it, cuz I just said, well, ok I DID have cancer, but I am STILL being treated for it! WE laughed!
But honestly I don't know the right way to say it!
Thanks,
Lisa
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I personally say I "had" breast cancer .... I Never use the word Survivor though; it's just a personal feeling regarding that word but I'm not alone .... some large institutions don't use it either. Your question has been asked a million times over ... I say use what is comfortable for you but never use it as an excuse. Looks like I'm on your Daughter's side :) .....
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  Read your journey of Chemo, I too will be starting Chemo...... soon, (sometime in April) I was just wondering what type of Chemo you were doing AC or TC, I was given a choice, I thought that was odd because how the heck would I know. AC side effects are heart and TC side effects is Respitory, neither one sounds good to me.  How are you doing now? I am also worried about my other breast. Now I know why people choose bilateral masectomies.....less worries. Let me know how you are feeling these days. I will only need to go through 4 sessions of Chemo.....(I guess my choice)
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Good luck in your journey..it is long, but for a good cause (to keep you cancer free!)
I had tamoxifin (tamoxifen), herceptin and something else. I cannot remember the name - I kind of just showed up and let the nurse do her thing!
I am now on to the radiation part of my treatment - I got my tattoos on Tuesday! So in about 3 weeks we will start! But I also still have the Herceptin to continue.
Please continue to come back to this board as it REALLY makes a difference, the people here are so very wonderful ...they explained so much to me when I had so many questions! AND they still are teaching me!

Have a great day!
Lisa
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Since being diagnosed with bc, I am making myself crazy with checking my breasts.
I found the lump on my good breast, then found out it was "just a cyst"...they told me to cut out my coffee and chocolate as caffeine causes these types of lumps. BUT I used to drink coffee by the pots, and now I have maybe 1 cup a day as the smell of it would get me sick.So I drink very little coffee or tea, and NOW I get lumps, never got them before.Does THAT make sense?
  Now I have found a lump on my "bad breast"... it was painful, like the other one, bigger , and now smaller, like the other one, and now almost nonexistent, like the other one....... do I even bother telling my doctor about it? I feel like I am a worrier....... I have never been that way before.
I am to the point right now that I don't want to be "that" person who runs to the doctor every time I feel something. BUT I don't want to blow off something and in the end regret not saying anything.
I don't know if I want to tell my doctor - "just take them both off now, so I don't make myself crazy - or if they can even do that now. I don't like this feeling of always worrying. Does this feeling ever go away? Is it because this is still too new? And is it possible to go back and tell my doctor that I want them both off?
Another question is this - IF I had them both removed, and IF I had reconstruction, how do you "feel" if a lump comes? I didn't really look into reconstruction to much in the beginning. And is it possible for a lump to grow behind an implant? and if so, how do they find it since you wouldn't ba able to feel behind?
I am making myself crazy with all of these questions..........aaaaaaaaaggggghhhhhhh! I guess I should stop thinking so much!
Thanks,
Lisa
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I read your newest post and now you see why I posted what I posted earlier about this. It doesn't end and the worry really can get to be more than you may want to tolerate. But really, the worry will always be there once you've had a BC diagnosis.

As for reconstruction, since you're having radiation implants would not be a good choice as there is a 70 to 90% failure rate using expanders/implants. Radiated skin hardens and doesn't stretch as it would be required to do with implants. But you could be the lucky 10 to 30% and not have an issue.

That said, implants are typically placed under the pectoral muscle and a lump would be above it so you would feel it easily.

I'm attaching a post that I made a while back for someone else that will give all the reconstruction options out there. Best wishes.

http://www.medhelp.org/posts/Breast-Cancer/Trans-flap-vs-implants/show/1308880    ; This post is lengthy but covers what you're thinking about.
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Tuesday I had a treatment and asked to see my doctor, she wasn't there, but my other doctor was, so I got to see him ( I go to a teaching doctor, and my doctor has an overseeing doctor!) ANYWAY, I told him about what I had found, and asked his opinion about total mastectomy, being that I have become a nervous Nellie! and keep finding things. I was asking because I am to start radiation this week, and I wanted to know my options while I still had options.He said this feeling will go away in about a year, and I will regret it later....... but being that I have already had cancer, he scheduled me for a mammogram and an ultrasound.... I went today for that. After the mammogram, they needed more pictures. I had the ultrasound, then they needed more pictures..... I left, before I got home, the doctor called and said they found something else.... it was on the ultrasound, but not on the mammogram (exactly like when they found my first cancer) so they are referring me BACK to the surgeon for further exploration...........of course we won't know anything without a biopsy, but when I finished my first core biopsy i SWORE that I would never do that again. I hated it! I found it to be the very worst part of this whole ordeal!

SO, my question is, do I HAVE to get a biopsy, or can I go straight to removal of my breast without knowing even if it is cancer?

Can I opt to have both of them removed?

Since I have been getting Herceptin since November for my HER2 cancer, why could this have come back? Or does this mean that the surgeon didn't get it all the first time? And I thought that while getting Chemo - nothing would grow, isn't that WHY you get chemo and Herceptin?

What is everyones thoughts on total mastectomy when you don't have it in both breasts?

My appointment is Tuesday with the surgeon, so I have until then to come up with some answers and a bunch of new questions for him!

Thanks in advance,
Lisa
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Hi Lisa,

First, you can get another cancer and/or your original cancer can spread during chemo. How ugly of a thought is that! My cancer spread to my nodes during chemo because I couldn't have surgery until it shrunk considering the size of my 10 cm mass. Chemo has an accumulating effect and it takes time to shrink and/or stop cancer cells. And right now you don't know if it's cancer, if it's the same type of cancer or a new type of cancer that won't respond to herceptin. It's totally possible to have two different types of cancer.

It's always good to know exactly where the naughty tissue in question is, how deep it goes and what type of cells surround it so that when a mastectomy is done it gets ALL of it. During my mastectomy they ended up going into the chest wall removing half the layer to get clear margins. This is ALL IMPORTANT, you don't want any naughty cells remaining. Pathology of the breast tissue from biopsy and mastectomy will be done and you will get this report from your surgeon about a week later. They will want the biopsy first though so if you're adamant about not wanting it get prepared for the argument above and perhaps others. Yes, you can have both removed.

You know my response to should I have bilateral mastectomies so I won't reiterate it.

I just wish you the best and I know you're scared out of your mind with this. You can do this. You need to have confidence in whatever choice YOU make for YOUR body. Whatever you do will be the best decision for YOU, no regrets!
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Thanks for your words of wisdom, again! I am scared out of my mind this time! I guess I will have to wait until Tuesday to talk to the doctor, then make the decision. I know this doctor is all about conserving what you can....but I am all about getting it out and being done with this part of my life! My husband said it is totally up to me. He has no thoughts either way, that I have to feel right about what happens!
I was unaware that chemo had to build up in order to work.... that is kind of deceiving. I thought I was safe while taking chemo. I thought that even if something was left behind, even if it started to grow, the chemo would attack it and kill it. That is a little bit of false hope.
I have been looking on the internet for pictures, of a mastectomy, without reconstruction, and there doesn't seem to be a "norm" of how it will look. Some are hideous, some look nice...... So I guess it all depends on how good your doctor is, and what you have. I have seem some videos about reconstruction, and really don't think I want to go that route. Plus that seems like an very long time to be in surgery!  ( I am scared of not waking up!)
Oh well I guess only time will tell. I think I will go gambling this weekend and have a good time!
Talk to you soon,
Thanks again,
Lisa
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Lisa, it's rare that cancer spreads during chemo. Chemo attacks the fastest growing cells first. But if it's a more aggressive type like a HER2 + cancer the chance is there that it will spread. But I want you to know it is NOT common that it spreads.

I'll send you a dollar if you'll make a bet for me!
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Well, I did go gambling... and WON!!! my husband doesn't like to gamble, but he took me anyway with my sister and her ex husband,. We had a BLAST! Ate good! laughed a lot! Had a really good time. And when I asked my husband how much he lost, and when I was able to give it back to him, and tell him we had 65 plus, he smiled a BIG smile! SO it was a good weekend! I should have gotten that dollar from you!

"But if it's a more aggressive type like a HER2 + cancer the chance is there that it will spread. But I want you to know it is NOT common that it spreads. "
                  I did have HER2+ cancer......... did the surgeon miss some, or could it be another type? My first thought is that it is nothing, but as I was explaining it to my daughter, I kind of thought  if this is nothing, I would not have gotten a call from the doctor so quickly( I wasn't even home yet from the office!) SO I am writing all of my questions down for the surgeon tomorrow....
If I got through and do have the "girls" removed, do I need to start chemo all over? Or if I have a lumpectomy, will I have to do chemo again? Obviously, I am not sure I want to start that all over, I just finished! I am REALLY scared because the first time I went through this, it didn't show on a mammogram, only on ultrasound, and the surgeon had to go deeper than thought and THIS time nothing showed on the mammogram, only on the ultrasound, so my thought is, maybe he didn't go deep enough..OH so many what ifs. I wish tomorrow would come already!
Thanks,
Lisa
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I've been following your recent conversation with SueYoung55, and just want to add that I'm thinking of you and am anxious to hear what you find out tomorrow.

Warm regards,
bb
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Congratulations on the winnings! It sounds like you had a wonderful weekend!

Lisa,

You may not have cancer again. Please keep that in mind. Positive thinking.... positive vibes.... we're all praying for you that this is NOTHING!


We're all waiting to hear.....
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Hi. popvender321!. I have been reading your journey - and can certainly empathize with you and the uncertainty, anxiety and many questions.

I have just had a  radical modified mastectomy 3 weeks ago... after have a surgical biopsy done 8 years prior.   My decision was east for me.

I get a chuckle that you went gambling.... that is exactly what I did the day I received my diagnosis...I didn't want to think anymore and I couldn't find a better way than to push buttons and listen to all the noise.

Anyway, I hope you don't mid that I follow you in your journey and post now and again.

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Just to keep you current with my diag.....there was no cancer in my nodes - the dr did remove 3 Sentinel nodes.  The pathology reports I am ER+ (3, strong).  I hope that I don't have to have Chemo; my Surgeon thinks I will have Hormone Therapy.

Anyway, my first appointment with the Oncologist is this Wednesday (Apr 6).
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Hello All,
Boy it has been a tough weekend! I went to get the biopsy done yesterday, and guess what? They couldn't find whatever it was they were supposed to be biopsying! They found about 5 or 6 "cysts" but not what they were looking for. So of course, they did nothing. I don't know if this is good news, or bad news. Plus I don't get that they are just leaving the cysts alone? When my surgeon examined me, he thought it was 3 cm away from my nipple, but the person who read the film said 5 cm. so they were concentrating on that area.....when I told them what my surgeon said, they dismissed me........oh I hate that..... I hate when people think because they have a certificate, that they know more than me about MY body.... I am not sure if my surgeon will want a follow up - since there is nothing to follow up on, but when I do see him again, I am going to let him know how pissed I am about that.
Now they did bring in a different ultrasound tech, and she re did an ultrasound, and she couldn't find it either, but, when I asked her about all of the cysts, she said, they are just cysts, no big deal... Oh how I hate that
I also hate this tingling in my hands and feet....when is this going to go away? AND I have gained 19 lbs from this ordeal.when is THAT going away? I am still so puffy from the steroids. My step daughter is getting married on April 30th, and the dress I bought before my diagnosis doesn't fit, so now I have to go out and buy a new one. I hate this damn cancer. I wish it was over...I want it to be done. I want my old life back. I am tired of treatments, I am tired of being tired, I am tired of hot flashes, I am tired of not sleeping a whole night, I am just tired..................................
SORRY, I had to get that off my chest! I don't talk like this often, but today is not a good day for me, as I am so confused as to what NOT finding that means....was it a cyst that has burst and disappeared, or is it something that is still growing inside of me only to show its ugly head another day??!!
Thanks for listening,
Lisa
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Oh I forgot to ask a question..........
My cancer was on the left side. Lately when I try to reach up with me left arm, it is painful. Not too bad, but it feels like I am straining or pulling my muscle, and sometimes it hurts like on the rib cage under my breast. Is this just everything coming back to normal?
Thanks,
Lisa
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Sorry you are having such a bad time right now...

Threperipheral neuropathy (tingling, etc., in the extremities) can take a while to go away, or, unfortunately, in some cases, it can be permanent.

The swelling/puffiness from the steroids will gradually disappear, but maybe not by the wedding date.

The pain in the arm might be from unavoidable nerve damage r/t your surgery, and normally diminishes over time.   Are you noticing any swelling in that arm? If so, that can signal developing lymphedema, which should be treated at the earliest time (by a lyphmedema therapist, using massage and compression) to keep it to a minimal level.

I am going to send you an artcle in a  private message that you will surely be able to relate to. (It's called "When the treatment is worse than the Cure.")

In regard to the wedding, I understand YOU are concerned about looking your best. But it sounds as though you have a close and loving family, and I'm sure what will matter to EVERYONE ELSE, including your stepdaughter, is that you will be there, alive and well. And that hopefully, as the result of all the uncomfortable treatment and painful procedures you have gone through, that will continue to be the case for a long, long time--including being able to attend her son or daughter's wedding sometime far in the future!

Wishing you all the best,
bluebutterfly
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Thank you for your always kind words of encouragement! I know that my step daughter is just happy that I will be there....i asked her a while ago which she would prefer, hair - no hair, hair just like my old hair, or something new. She responded that she didn't care, just as long as I was there! She made me cry - you see, we didn't always get along!! (imagine that - a step daughter and a step mom NOT getting along!!!!)
But anyways.... thanks for your help.
Lisa
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Correction: As I'm sure you discovered, the title of the article is actually, "Breast Cancer Treatment: When the cure is worse than the disease."

It is one of the worst I've read as far as detailing the posible negative effects of treatment, but also one of the best in supporting the patient's right to self-determination.

Let us know how the wedding goes!

bb
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start the slow, fingers walking up the wall exercise again to keep mobility. Chemo does wierd things to our bodies and we don't get alot of explanation as to why or what next or what if...

I hope you enjoy your wedding!

BB,
Could you send me that article? Thank you :)
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I went to have a treatment yesterday, and told my nurse what had happened with the biopsy, and that I had not heard back from the surgeon, only his nurse. I told her I was unsure as to what to do now, she went and told my doctor.. she came out and talked with me for about a half an hour and told me that she is recommending that I see the surgeon again to discuss a double mastectomy. She feels that with what has been happening, and what she feels will happen that it is the best course of action for me now. I was like wow knock me over with a feather!
Of course this is what I wanted from the beginning, but now that she has said it out loud, I  am not sure what I am feeling!  A whole new set of feelings are coming my way! Reconstruct? No reconstruction? Bigger? The same size? So many decisions now!
I am reading all I can about it now, and trying to find pictures to see to compare. BUT, I think any advise I can get from this board will help. SO - I am asking for advice on this decision.
Reconstruct or not? - -Bigger or not ? - - Wait for reconstruction or at the same time as mastectomy?
Thanks,
Lisa
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Here is a link to a detailed, excellent discussion of the pros and cons of many different types of reconstruction, by our "BC Community Forum Expert On Reconstruction," Sue Young55:

http://www.medhelp.org/posts/Breast-Cancer/Trans-flap-vs-implants/show/1308880?personal_page_id=384050

I'm sure you will find it helpful, and that if you have additional questions, she will be able to answer them.

warm regards,
bluebutterfly
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Hi All,
The wedding was FABULOUS!!!! My husband's ex wife really made me feel comfortable being the other "Mom" - I was scared about that whole thing! My step daughter was beautiful! My new son in law was great! The food was so good I went and got seconds! Just a REALLY great weekend! BUT the best part was - no talk of cancer! It was good to get away from all of that for a few days!
And now back to reality! I have a decision to make, and I really need help with some questions that I have......
I just re read the Trans Flap vs Implants, and I am more confused than ever!
With a double mastectomy, with immediate reconstruction, What is done immediately? Is that when they would put in silicone implants? Or is that when they put in saline "bags" ? Or is it either?  And if they can do that immediately, then why all of the talk about the expanders? Or do you have to use the expanders when it is not immediate?
As for the recovery time, I have seen that it takes 6-8 weeks to recover. Is that the scars take that long, or are you in bed that long? If I can be up and around, possibly back to work recovering just my scars, as a Barber, am I going back to work quickly, or am I not going to be able to work at all
And what about the drains I keep hearing about? What's that all about?
And if I get the double mastectomy, but decide NOT to get reconstruction, what are the scars like? Are they little scars or are they big scars?
Thanks for any help. I go to the surgeon next Tuesday, and I want to have some answers for him so we don't dawdle on this.......
Thanks,
Lisa
I guess, I want kind of a play by play explanation of this procedure?
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Hi,

Glad to hear the wedding was wonderful!

I don't have expertise in the areas you are moving into, but Sue Young has done some excellent posts about preparing for mastectomy and about various types of reconstruction, that should help:


http://www.medhelp.org/posts/Breast-Cancer/How-can-I--prepare-for-my-bilateral-mastectomy/show/1227057?personal_page_id=384050#post_5678838


http://www.medhelp.org/posts/Breast-Cancer/Trans-flap-vs-implants/show/1308880?personal_page_id=384050

Warm regards,
bb
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p.s. Sorry! Didn't realize until after I posted that you had already read one of these. (When I first read your post I took it as just meaning you had been reading in general about the Trans Flap procedure.)
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Hi,
I went to the surgeon the other day, and after waiting for him for 45 minutes, here was our conversation:
he came in and said, I see they couldn't do the biopsy, I guess whatever it was went away. So why are you here?
I said that my Oncologist was suggesting a bilateral mastectomy, and I was here to discuss it.
Who is your Oncologist?
I told him, Dr. Paun
Oh, I don't know who that is I don't see any reason for that to happen, I mean you aren't even done with treatment yet, you did well with the chemo, I took your small amount of cancer out. I don't expect it to come back. Why would he tell you to do that?
First of all.. it is a SHE.  I told him that she recommends it because of the difficulties that I have been having since. the scares.
Well it really has been nothing to speak of, I don't think you need it.
I said, I have been talking to some people, and they cannot believe that I still have them
Well, that is a very invasive surgery, and one that you really have to think about, and blah blah blah....... then he said I think you should talk to some professional people..
I said I talked with my Oncologist, I talked with my nurses, I have talked with other who have been where I am..
He said, no I think you need to talk to Dr. Somethingberger.... he is your doctor, the one I am partnered with, and then you should see a psychologist, or a psychiatrist, and then you need to see the plastic surgeon and then if they all agree, then we can talk about doing it, but I think you need to finish your treatments first.
I then asked....... why is it that all of these MEN want me to keep my boobs, but all of the women that I talk to can't understand why I still have them?
he said who thinks that
I said - my Oncologist, my nurses, other who have been where I am....
he didn't say anything
I said, but I have 3 more Herceptin treatments, and my radiation was put on hold until we get this cleared up, because I thought you couldn't reconstruct on radiated breasts. why would I go into radiation, if I was going to remove/reconstruct?
again - no answer
I walked out crying and thinking oh great, now I am crazy! I went to my treatment, and was crying and the nurse told me to go to another surgeon, and gave me the name of a female surgeon.........tomorrow I am calling her to get a second opinion. Am I right in feeling that I have been wronged by this doctor?
Sorry this is so LONG....... I don't know if I am over reacting oh yea, my surgeon made reference to me in the beginning wanting to do this from the start, and he was against it then too.I am a bundle of confusion right now...maybe I don't need them off. What if I am just a worry wort. Am I over reacting.. Am I cured for good now and don't need to go any further with this?
My Oncologist was supposed to call me back, but hasn't....
Thanks for listening,
Lisa
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I am sorry you had to deal with such a paternalistic approach!

He had every right to offer his professional opinion or even to refuse to remove a "healthy" breast if that is his stance, but it sounds as though his discussion with you was as much personal as professional.

I think it is a wonderful idea for you to consult another surgeon.

I am glad you are doing well so far, but with invasive BC, "cured for good" cannot be relied upon, and since you were HER2 + there is an added risk for recurrence over HER2 - status. One of our members, Cheerpul, has written extensively about her decision to go the route you are considering. I hope she will chime in with her views on what you just went through with your surgeon, but if not, going  to her profile page and going  through her posts might give you some sup[port from someone who has "been there, done that," and is happy with her decision.

Hang in there,
bb
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Thanks for the support
Today is PROM DAY for my oldest, but as soon as I get 1 minute, I will definitely look her up!
Thanks again,
Lisa
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Bluebutterfly sent me a message and here I am- I can refuse her nothing.  I have been working 3 jobs and going like crazy - but then  you know there are always doctor bills.  (Shrugs and laughs)  Now, I am all yours.  Wow, our cases are fairly similar and I live only about 3 hours from you, west of Toledo OH.  I had extensive comedo-type DCIS, barely b-cups, opted for a mastectomy and then found a .5 cm tumor that was ER/PR+ and Her2 positive.  After much research (there isn't much out there) I decided that chemo would be prudent (Oncotype score 31 due only to the Her2 gene.)
I took carboplatin, taxotere and herceptin, had nearly every side effect, but worked full-time anyway, was tired and sick, bald and diahrrea, but sang in two choirs every week (mental therapy) and did almost no housework or dinners for about 4.5 months.

I felt better, grew hair, worked about 75 hours a week (supervising 7 counties for the Census bureau and as an historic cook and supervisor in a living history museum, Sauder Village, in Archbold OH) and got back into life.  Last December, I had a second prophylactic mastectomy.  I brought it up with my surgeon and asked - "Paranoia or prudence?"  He said "Prudence."  For every percentage of breast tissue that remove, you lessen your chances of breast cancer coming back.  (So I' better than 95% free.)  BUT, cancer can still come back elsewhere.  He suggested that I talk to my oncologists.  I have one local and one at University of Michigan Cancer Center.  They both said, "Great idea!"  I asked, "Then why am I the one bringing this up?"  Well, it seems that the docs (all 3) are concerned about being accused of coercion in a lawsuit.  It is not that it is a bad idea for a Her2 positive lady.

Why is there this movement away from mastectomies toward lumpectomies?  Who knows?  Probably because, on paper, it seems less invasive; more normal.  For some folks it is a good idea.  For others, not.  There is no one correct answer.

Your breasts are yours, the decision comes down to you.  This is my thought process and why I chose two mastectomies.  I am a very practical person.  I am a short, overweight 48-year-old who looks more like a German aunt than anything else.  (My photo is from my museum where I am an 1840's Amish-Mennonite lady often.)  I never had cleavage and haven't missed it since I was in high school and saw a well-endowed friend with indents in her shoulders and back pain.  (Just so you know why I am not attached to my bosom.)  Because of this attitude, when the Doc said that I had a lot of the high-grade DCIS, I said please just do a mastectomy.  Two days later, thanks to a cancellation, it was done.  Thank God we did, or I don't know when we'd have found the tumor, which had not shown up on mammograms, spot-compression mammograms, or ultrasounds.

I wanted the best chance for a once-in-a-lifetime cancer experience, so I went with chemo.  I also opted for the second mastectomy.  Now, my docs and I have known each other awhile, I cook for them when I have appointments, and we've had long conversations.  They know my mental state and my thought process.  All my surgeries are in Defiance OH, a small town Mercy hospital, where I have a fabulous surgeon.  My oncologists work together between Defiance and Ann Arbor fairly well, but not seamlessly and my primary care physician is actively involved.  You have to be your own advocate, because doctors are still influenced, even when they don't want to be, by lawyers, insurance companies, ideologies (lumpectomy is best....)  and so on.  You do research on factual sights, ask questions and go until they tell you what they really think.  (Hard to get to that point for some of them.)  I've been asked, "Do you want me(oncologist)
to make the decision for you?"  I said, "No, I can make a decision, but my degrees are in music.  I want to know what you reccommend, and why, and your thought process, since you've been an oncologist for 20 years or so.  Based on what you have seen happen, what would you choose?"

I haven't had to fight them as you have.  Nor have I had a problem with my insurance covering these treatments.  I am sorry that you have had so many conflicting and not supportive opinions. It is hard enough to go through without that, too.  I will say that my husband stays out of my way in the decision, is very supportive about housework and taking our daughters places, but is almost totally unsupportive in emotional matters.  His statement, when I asked what he thought about mastectomy #2 was, "I don't want to watch you go through that again."

It's been 1.5 years since I began and about 5 months since my second mastectomy.  How are things now?   After the first mastectomy, I went back to work in 1 week with permission if I did not lift or cook in iron pots. :)  After the second, I went back in 5 days, but did not lift for a few weeks.  I am not having reconstruction.  (That is another issue fraught with problems for many.)  I have ordered the largest prosthetics possible, so that I can wear them in plays where I am often cast as a buxom woman.)  I have one thin, pale pink scar across my chest on the left side and a medium pink scar on my right.  I look "blanked out" (no nipples) but not disturbing.  I am enjoying going braless and am going to have a bra-burning party this summer where we will burn a bra and papers with all the things that my guests would like to put behind them and no longer drag around with them.  Because I have done all that I can to prevent further cancer, I go to all my checkups, but do not worry about cancer returning.  I just work hard, sing and enjoy every day.

You can add me as a friend, write back, send me a message or ask questions and I will do whatever I can for you.  The decision-making part is the hardest, especially in your situation.  I am praying for you.  Shellee
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Wow is all I can say! Thanks so much for all of the useful information. I am so distraught about all of this, that when I talked to the secretary today, and she asked me who did my treatment the other day, I couldn't remember...... my mind is just not working....although my brain hasn't worked well since I started the chemo!!!
But anyway, the more I think about it, the more pissed off I get. Almost like how dare he make me think I am crazy for wanting this done, that I need to talk it through with a man to get me head straight.
It seems like I have the only doctor in the states that feels like HER + cancer is no big deal.I was looking through a report given to me by me female oncologist, and there are so many trigger words. I can't understand why he thinks so differently than me.words such as but not limited to, heterogeneously dense, area of concern, palpable concern, poorly defined hypo echoic mass... of course these all sound bad to me as I do not know what they mean!
I too have all along said I wanted this to be a "once in a lifetime experience", but  all I hear from this surgeon is, I did my job and now you are better.... I looked his name up on google, and all it says is he is a MD, it doesn't say anything about his specialty being cancer surgery, just MD, so now I am wondering if he really is the right guy for the job, even if he does end up agreeing with me!
I am waiting for my doctor to call me back, and her nurse was on vacation this week, so neither of them have called.......thank you very much!!!! (slightly sarcastic!)
I don't even know if I am interested in having reconstruction, as I really don't want to go through all of the waiting to finish that! But I do know myself, and I probably wouldn't want to be bothered with the fake ones in my bra, but then again, I don't want to be flat chested either.So not  to many options there! I don't know if there is a way to go into surgery, get the "girls" taken off, and wake up from surgery with the new and improved me!!??
I did just do a look up of the doctor that the nurse suggested I call, and it would seem that she is VERY versed in the breast cancer area. She has some kind of program that she has started, I didn't read it too much, but I think I will call her on Monday, even just to have a second opinion.THEN, if she says the same as the MAN doctor, I will leave it alone, but if she says differently, I will go with her for the surgery!
OH boy, I thought my days of thinking of this every minute was behind me, but I guess it is not!
Have a great weekend,
Thanks for your help,
Lisa
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OH yea, after all of that I forgot to ask everyone..... my left side, the side that had cancer is weird....I know all about the tingly feeling being, oh what is that word? anyway I haven't seen it discussed too much, but here is my question. I have had tingly fingers, and have been barely able to feel my toe nails when I try to cut them. But now, my left hand feels swollen, my wrist and forearm are about 1/4 inch bigger than my right....could be because I am left handed, but not sure. But also my 2 middle fingers feel like they are  about to burst when I close my hand.And the tips are so sensitive. and the bottom knuckle and about an inch into my hand ... kind of burn. I was having a hard time with my arms, both of them. I usually sleep on my side, first one side then the other, not I have to sleep on my back because when I do, my shoulders hurt SO BAD. On several mornings, I have woken up with my arms above my head (another favorite way to sleep) and I have to move my arms down about an inch at a time because I am in so much pain.
Does all of this sound "normal" to you?
Thanks again,
Lisa
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Not "normal," but, unfortunately, fairly common...

The tingling you had could be related to (unavoidable) nerve damage during your surgery, lymphedema (swelling from problems with drainage of lymphatic fluid) can develop in the arm anytime following surgery, and some chemos can cause neuropathy (nerve problems) esp. in the extremities, so there are several possibilities to be considered in regard to your recent symptoms.

Discuss these symptoms with your doctor(s), as well as have them examine the swollen arm, because if you are developimg lymphedema, early treatment (provided by specially trained message therapists) is very important to keep it under control.

Sorry for all your dealing with!
bb
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To add to Bluebutterfly, any time you have a wierd symptom, you should contact your doctor(s).  There are usually explanations and treatments to make it go away or help you cope.  Don't ignore it and "soldier on" when it can be better.

Sounds a lot like lymphedema, especially if you had a number of nodes removed.  There are definitely early treatments for that.
Take care - Shellee
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I am not sure if I should start a new thread for this, but....
Last night I went to a fund raiser (bowling for boobies - for a friends walking in Komen Walk) anyway I bowled 2 games, and kind of felt "hurt" during the second game. I am left handed and that is the side I had my cancer on... I had my surgery in October, but after the games, I had well it is hard to explain, but a little pain in that arm. I bowl with a 12lb. ball.  Is this something that I should not have done? Do I have to give up bowling forever? Or just a little while longer? I never thought of this until yesterday, and then someone else said, they were told to not even carry their purse on that side ever again!? SO do I have to baby my left side for the rest of my life?
Thanks,
Lisa who is smiling big, because  we FINALLY have some sunshine!
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You are very brave and quite foolishly so I might add. I personally would NEVER engage in this type of activity on the operative side and I doubt that it would ever be approved by any of your Dr.s. I suggest that you start leaning to bowl right handed if you intend to continue in this sport. I don't mean to sound harsh but the price you may have to pay would be too high for me when compared to bowling. Forget the "a little while longer" part too; this would be a lifelong issue.  Take care now and try that ball in the other hand ....
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hhhhhmmmm.... I guess I did not know this. I don't remember them telling me I can't ever do things like this. I will follow orders, but I didn't know. What kind of problems could I have caused? What else do I have to give up on with this new lifelong issue? My work involves lifting packages, sometimes up to 75-80 lbs. am I supposed to not lift those? Is there a weight limit that I should be aware of? I REALLY don't want to mess myself up. Is there somewhere I can look this up?
Thanks for opening my eyes to this,
Lisa
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Hi there, I just have been following your journey!  My mom's going thru a similiar one at age 82.  She has neuropathy really bad with the tingling and pain then on top of it lymphedema.  If you get a true diagnosis of lymphedema you would qualify for treatment under the 1998 breast cancer act.  Treatment is called combined decongestive therapy and it feels great like a masage!  A specially trained therapist moves the fluid out of the congested area and you are wrapped to keep it out.  You are taught how to do the bodywork yourself and how to wrap, maybe skin brushing, home care and graduate to a sleeve which is a compression sleeve.  I have lymphedema full body almost.  I'm a survivor too but only had lumpectomy.  Mom had masectomy right side last August and this Jan lumpectomy left side.  We are brca 1 and brca 2 positive.  Tina
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I went back and read some previous posts and Lymphedema was mentioned in one of them. This is the issue I'm referring to and I suppose you weren't given many restrictions (although I thought I read something about not lifting over 10 lbs, but I could be wrong as it may have been something that was mentioned by someone who answered you) is that many Dr.s (including my own Surgeon by the way) don't even believe that LE exeists. Believe me IT DOES !!! It can occur anytime following any interruption of the lymphatic system which would be when even one lymph node is removed. Another disgusting feature of LE is that it can occur many years after the surgery.There are many precautions and you might just put Lyphedema in search .... LE has a website where much information can be obtained. I don't believe in going "over the top" with the precautions but some make very good sense and your mention of lifting 75-80 lbs sounds like something I would be cautious about. LE is no fun and once you have it, you have it for life even though it can be treated by various methods of massage, wrapping, compression garments (sleeves and/or gloves) by a specially trained Physical Therapist. Let's hope your bowling result was just too much activity and NOT LE related. Do be careful though, OK ??   Take care ......
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Thanks for you r input. I have already decided to talk to my doctors about the swelling and such to see if something can be done. I took all of my rings off of both hands and feel so naked! The feet seem to be a little better, not all gone, but better than they were. But my hands are not stopping with the tingling and the pain. It is mostly the burning that is making me nuts!
With being BRAC positive, why didn't they remove both breasts for you and your Mom? I thought that was kind of standard for BRAC +?
Thanks,
Lisa
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I thought the 10 lb rule was for while you were healing up. Do you mean that is for the rest of my life??!! My purse sometimes weighs more than 10 lbs!! I will look into LE more, as I did do some reading on it, but not a whole lot. I guess that even though I thought I was going into this eyes wide open, I have had the blinders half on. I need to read some more!
Thanks,
Lisa
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That's easy to do ..... LE was the ONE thing I most dreaded and I know that sounds ridiculous when you're dealing with BC but that's the way I felt about it. Carry the purse on the other side .... I do and even though I admit that I'm probably NOT as careful as I should be, I do try to keep it in mind and make adjustments when I can and NOT overdo when I can avoid it. If you have the opportunity to speak to a Therapist who specializes in LE treatment it would be an eye-opening experience. Take care now ........
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OK Ladies, I have my surgery scheduled for July 18th! My daughter's graduation is the 17th! I am scared and excited in the same thought! The docs have finally agreed with me - so I am having a bi-lateral mastecomy with reconstruction.
I have found another lump in my "good" breast and don't know if I should tell them about it ahead of the surgery or just wait. Any ideas???
Also, I have to give them a final answer about HOW I want to reconstruct. In looking at all of the ways to do it, I don't think I saw one that said an implant along with some of my own like stomach tissue and fat. Is there such a thing?They told me I don't have enough in my stomach for only using that, but I was wondering if they could do it using both? Anyone know?
My docs put me on Lyrica for the neuropathy, and it seems to have worked some.... I still feel like I am working with band-aids on my fingers, but it is getting better! I have been having some of the common side effects from the drug, but I am not sure they are bad enough to quit taking them.
I have had my last treatment of herceptin!! WOOO HOOO !!! And I am feeling pretty good these days!
I hope everyone is doing great and will check back for answers soon!
Take care,
Lisa
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I think I would mention the new lump before the surgery; it's nice to know what you're "getting into" even tough you're having a Bilateral. I suppose you have seee the plastic Surgeon regarding your reconstruction and he/she would be the best one to advise as to which procedure would be most appropriate for you. Wishing you the very best for a successful surgery and uneventful recovery.  Congratulations to your Daughter on her Graduation too. Regards ....
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Hi All,
It has been a while ... I thought I would update! I had my bilateral with expansions put in last Monday. I am feeling really good. I am draining only very little, and have very little pain, actually no pain, just a little pressure every now an then. I was in the hospital only for about 26 hours total and was up and running around by the 3rd day! I don't like the way the scares look, so I am hoping that they will pretty up in time! They aren't straight or even. (some encouragement is needed here!!??) Some good news is that the pathology report came back negative! So all of the lumps we were finding were nothing!
I hate it that I cannot get right back into work..I work as a barber and they said no work for 2 weeks minimum. I can't do laundry - which is in a pile as tall as I am! And the floors are getting kind of dirty! BUT oh well..if my kids aren't going to do it for me, I won't worry about it!
On the bright side, I am going to Chicago to see Joel Osteen on the 6th, and I am SO EXCITED! It will be a long car ride, but he is worth it! (we live in the Cleveland area)
Just wanted to update you all in case you were wondering!
Talk to you all soon!
Lisa
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Great to hear from you .... it all sounds good but I'm not surprised about your disappointment regarding the scars. Give it a couple years and then if you're still unhappy go for a scar revision. Don't rush the going back to work or any of the "chores" they will all wai for you and it's worth the aggravation. Enjoy your trip to Chicago and I hope it cools off some by then.. Take care and Congrats on a job well done !!
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Hi Lisa,

Thanks for updating us--I had been wondering how you were doing!

As japdip mentioed, time can do a lot for incisions "scars." They shrink, flatten, whiten, and fade for at least a year or more. After than, if you're stiil bothered by them, you could look into revision.  (But if by then you are generally pleased with your new breasts, you may decide it's not worth more surgery, because not that many people see them bare--unless of course you have a side job as a stripper, LOL!)

Regards,
bluebutterfly
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Hi,

I just got done reading your journey. We had similar type of cancer I just went more aggressive in the beginning for my peace of mind and did bilateral mastectomy. Also did reconstruction and don't let the scars or the shape scare you right now. The tissue expanders are meant to do one thing and that is expand that skin. Once you get your permanent implants they will nip and tuck you will be amazed. I even went back for nipple tattoing didnt do nipple construction.

Hey they don't look like the real thing but they fill my shirts out very nicely and noone would every know if I wasn't such an advocate telling everyone I meet. So good luck and hang in there they do get a little heavy towards the end you do have to go 30-40 percent bigger than the size you want to be at the end so don't rush it. Let your body and skin strech gently:)

Kimber
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OK so the Joel Osteen weekend was FANTASTIC!!! He is just amazing! We also went to the Aquarium while in Chicago. Unbelievable!!! It took us 6 hours to see it all!!! WOW is all I can say - that and I can't wait to go back again!!
I had my second fill today, and I can now see a little bit of a bump there! I have had no problems so far and very LITTLE pain!  YAY! It looks like I am nearing the end of this journey!
I wanted to thank everyone for all of their help getting me through it. THANK YOU I hope that one day I can help someone else like you have done for me!  
I will continue lurking here on the board and will pipe in when I can.
Thanks again, and warm wishes to all of you
Lisa
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I'm away on vacation, but just had to respond to your nice note by using the computer for the residents of my mom's extended care facility.

Glad to hear things are coming along well!  You've come so far since we "met," and I'm glad you're now heading down the home stretch.

Regards,
bb
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Hi Everyone,
I was just rereading my journey.... it seems so long ago that this started, but at the same time like it was yesterday. I wanted to thank everyone for all of their great advice while going through this. It is so funny looking back, and thinking then how I "THOUGHT" it was going to be quick and easy to get through this! It was easy, but here it is more than a year later and my life still isn't my own! BUT SOON!!!
I have just had my last fill, and am waiting for the final placements....... and of course I have a question!
silicone or saline? Any thoughts as to which is better, softer, nicer to look at, lighter???? The expanders are so heavy, I am so surprised! Will the replacements be this heavy?
Also and I know this is a dumb question, but what date do I get to use as my anniversary date for when I can say I have been 1 year cancer free? Does that come with a final appointment when they do some kind of test to find out that I have no evidence or something? Or do I use the date of my last surgery, or the first surgery? (told you it was a dumb question!!! LOL)
Thanks again,
Lisa
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Hi Lisa,

Great to hear from you again!

I would suggest you discuss the pros and cons of the various types of implants, from the perpsective of safety as well funtion/appearance, with your plastic surgeon. But other members of the forum who have "been there, done that," may have advice for you from their personal perspectives.

I believe most people figure their "cancerversery" from the date they were dx with BC.

Warm regards,
bluebutterfly
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p.s. Here are links to two discussions regarding the factors to consider in choosing which type to get:

http://www.breastimplantinfo.org/augment_4faq10.html

http://www.drdonnica.com/guests/00012319.htm

bb
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Hi! You are almost at the end! Yeah!!!

You may want to pose the saline vs silicone question to my friends at facingourrisk.org as the majority of them choose implants for their prophyllactic surgeries. I know one of my friends couldn't achieve the projection she wanted with silicone so she chose saline and is happy.

As for your cancerversary date, that is the date you were diagnosed with cancer as BB told you. That is one date you want to celebrate for many many years to come!
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Thanks again for coming through with answers!!
I love the word cancerversary - whoever came up with it - the word made me laugh!!
I will be looking all over for the answers - thanks to both of you!

Lisa
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I just wanted to pop in to say Happy New Years to all. And to let you know that this was our BEST Christmas ever. I had my breast replacement surgery on Dec. 14th.... I had my last treatment on the 20th........... and now they said don't come back for 3 months!!!! woo hoo! For my birthday on the 30th my husband gave me gift certificates to Victoria Secret to buy new bras to fit the new me... I have NEVER shopped there before, and splurged on $45 bras! (they better last the rest of my life!!) So very happy to have this behind me now............
I wanted to thank everyone who helped me along the way, answering all of my dumb questions, and offering such good advice - I wish I could give you all a hug.
Thanks again,
Lisa
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Lisa,

I know how important the holidays are to you and your family (since you asked last year about the possibility of delaying treatment until after they were over), so I couldn't be more delighted to hear that this was your best Christmas ever!!

I hope everything continues to go well for you!

Hugs right back at you,
bluebutterfly
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