reconstruction pain

What is the normal time frame for pain reduction after bi=lateral mastectamies with expanders? I am still having considerable pain after 3 weeks. Thanks

[Cleveland Clinic]

Dear t-belle, Length of time for experience of pain post op can vary depending on extensiveness of surgery, individual healing etc.  However what we should see is that the pain is reducing as time from surgery goes by.  It is best to talk with the surgeon about the pain you are experiencing so they can assess that all is well with the surgery as well as how your pain could be better managed.  

[carme]

While I didn't get to keep my expanders ( lost them to massive infection 4 weeks and  7 weeks after surgery), the pain was there.  I quit the Vicodin and went to Motrin after 2 weeks.  I wanted to get up and start moving around, but that "low grade" fever that was "normal" had me feeling  poor. Usually after surgery for me, getting up and walking around has been the best pain relief, ( 3 c sections, total hysterectomy).
Even tho I never got any more expanders, the feeling in my chest was like those metal bands around a wine barrel...for more than a year.
I play raquetball for an hour 3 times a week and still have some strange sensations now and then. My second plastic surgeon said it's scar tissue moving around and being tweaked by my activities.
I am getting the feeling back under my left armpit, but the right side is still numb. Had a large seroma under that armpit, so the pocket is still there...thanks to the "chief of plastic surgery" at that large reknowned hospital.
I thank him for sending me home with an MRSA and telling me that "low grade" fever while recovering, "was normal".  I thank him for postponing his ski trip to remove the second infected expander.
So much for supposedly having the "best" surgeon available.  It'll be 4 years this Christmas.

[maa64]

I had a mastectomy 5 weeks ago and just last week I stopped taking vicoden. The pain is there constantly and I have problems sleeping due to the pain. I talked to someone and was told once you can do the exercises they recommend to get movement back that the pain lessens. This week is better. I called my plastic surgeon and he said not to do any exercises. They explained that it is still early in the recovery process. I know that the pain is bothersome. Trust me I know. I am not a patient person - but they told me that after 6-8 weeks that I should be able to do some exercises.
carmen - I too have a pocket under my armpit - it is tough to shave. It was my understanding that most women do - due to the lymph node surgery. I might be wrong. Also my doctor told me about the tamoxifen and told me that 1% of women get ovarian or endometrial cancer from tamoxifen and that no one has ever died from taking it. That was the information I was seeking to make my decision. I will meet with an onocologist on 12/10/07 and will discuss treatment.
Take care t-belle and carme

[t-belle]

It's amazing how little information we are sent home with.  I started doing a few exercises without knowing it's too early. I'm probably doing too much, wouldn't be the first time. The pain has definitely begun to decrease in the past few days...however I had my first fill yesterday of 100 cc in each breast.  My ps thought it wouldn't hurt too much yet, and really it's not too bad, but it definitely feels like it's stretching the muscle :) I can't believe that I actually have a mound already. The Lord has been a constant comfort to me throughout this process, as well as all of you gals...Thanks!!

Maa64, I'll be praying for all of the decisions you have to make in the next few weeks.
Do you know what happened to the other ladies after they recently closed the other post?

[maa64]

No I was wondering the same thing about where the gals are.

Also please take it easy with the exercises. I can tell you my doctor was adamant about not doing the execises until 6 to 8 weeks. I was doing shoulder rolls and pinching my two shoulder blades together. You may want to check with your surgeon. I had a good chest muscle and they started filling up my expander right from the start of surgery. I woke up with a pretty large mound. Do you know what size your going to choose? I think I'm sticking to a full "B" size. I had a mastectomy in one breast. Will probably have to have work on the other side to even them up a little - seeing as breasts are to be side by side. LOL. After 4 kids gravity has taken a toll. Hope you are doing well.
Keep your positive attitude. I can think of not a whole lot of good out of this, but God promises turn all things to good. The positive thing for me is all the cards, flowers, friends, prayers, etc. That is so positive. My son's orthodontist sent me a card today. I was pleasantly surprised. So look for the good - because sometimes I think that we have to make a conscious effort to look for the good.
Take care

[rosejones]

I am 3 weeks post bi-lateral masectomy and feel your pain also.  I still have to take pain meds one to two times a day.  I am exercising with the ACS recommended exercises.  My PS recommended I do them when I felt like it.  I now have been injected with 530 cc between the two breast and it still hurts.  My PS filled me up quickly becuz I start chemo next week and he wanted me finished with the expanding before it started.

[t-belle]

Rose, so sorry to hear that you are feeling my pain. :) . I am 4 weeks out now, I have 280 in each breast, so about 560 between the two. I will go in next Wednesday for another fill, and each fill seems to make it worse for about a week...yikes!  It seems to be getting a little better with time.

I hope that the chemo goes smoothly for you, I will pray for you.

Hope you're having a wonderful Thanksgiving weekend.

[labhusky]

Here you are.  I finally have time to write.  Hope Thanksgiving went well for all.  Last Sunday, I fell down and twisted my right ankle real bad, and hurt the left one too just a little less plus skinned my right knee.  I had just gotten the dog outside and "decided" to trip over a cement ridge.  I was soooo mad and thought terrible things.  My dog didnt act like he cared either.  He just kind of looked back as if to say, "well, you coming?"  I have read stories that dogs go back to their owners if they get hurt out in the wild.  Oh well!!!  He didnt even "do anything" outside so the fall was all in vain.  Right after that, I had to unload the trunk of the car which had Thanksgivings meal in it.  Oh, so fun!!

Monday, I had to go to the rads so they could do my dress rehersal at 7:30 in the morning.  I could barely walk.  After I got out of there, I decided to call in sick to work.  I park about 3 good long city blocks away.  I was just afraid my ankle couldnt take it, and I had to get those tennis shoes off cause they were hurting it.

I did cook Thanksgiving and had my mom over.  I am stuffed now, and have gained weight arghhh!!!  Today is the first day my ankle feels pretty good even though somewhat sore and nicely bruised.  I am hoping that by next weekend, I can walk for exercise.  I start out November really strong, then all of a sudden back to work and the terrible fall.

Oh, Thanksgiving night, my drain clogged and was running slowly.  I called a plummer.  Called one where they couldnt come out till Friday.  Then, got ahold of one that could make it the same night.  I wanted to get the dishes done ASAP and not have to worry about the plumming service call after 8 Friday morning.  I wanted to sleep in.  The plummer got here around 8 when Survivor started (oh well, that was just a re-hash anyway).  He left a little after 9 and I did dishes.  WOOHOO!!!

Tomorrow, I start radiation for real.  That means I have to be there at 7:30 in the morning.  I am kind of glad I chose that time since they didnt have anything close to 5:00.  If and when the side effects set in after a couple of weeks, I will know how I feel BEFORE I get to work and I will call in if I feel I need to.  They do realize that I may call in intermittently.  I am actually thinking of scheduling a full body massage and calling in sick.  Plus, the schedule they gave me, they always give one or two extra appointments just in case I call them and tell them I cant make it that day.  I didnt tell the bosses at work about that though and may just call in to rest anyway.

Maa, I found out from my friend that works where I want to go back to they hired somebody.  I was bummed but I was wondering if the boss kind of knew what was going on with me since I was out on disability at the time.  My plan is the day or two after finishing up radiation, I will email that boss and tell her I am still interested and kind of tell her what I have been through but am through with treatments.

Whew!!!  How have things been for you?  I am hoping the pain is lessning and you are feeling stronger?  

[maa64]

Glad you are back! Wish I lived near you so I could help you out. I grew up a plumbers daughter so I probably could have unclogged the sink for you! Amazing what you learn peering over your father's shoulder while he is working.
Sorry about your ankle, things are mounting up - how are your spirits? You seem to be staying positive and I know that can be hard.
I'll be praying today for your radiation, by now you are probably done, but I will pray the side effects are minimal. I have a massage scheduled for tomorrow. A treat for me! You should really do something for yourself especially getting through radiation. Do you have to do chemo then? And I forget do you have any children? I thought that you did. I stopped taking my sleep meds. and that fog has lifted, I would tell my husband it was like I couldn't connect the dots (in my thought process). Things are really clearing up and I stopped doing stupid stuff. (Misplacing things, putting things in the fridge that didn't belong, etc) I thought it was the effects of the surgery but I think it was the ambienCR med. My son is home sick with a cold - the preschool cold - the never ending cold. Now my 17 year old has the cold - my husband just got over it and my daughter had it .
How are you doing emotionally? For me mostly good but then I have some really bad days. Yesterday it was triggered by a commercial on TV - my husband probably wondered where did that come from?
He has been so supportive. I am so glad to hear from you. I really wish we lived closer - then I could help you through this time. Take care. Keep me updated. thanks and God bless.

[t-belle]

Both of you are in my prayers. This Breast cancer journey sure can take it's toll on a person.  I went in for another fill yesterday....I'm up to 350cc so far. I could feel the stretching this time right as he was putting it in, so I asked him to do 70 instead of 100. Today it's not as bad as it was the last time I got 100.

maa64 How full are you so far ? It sounds like you're beginning to feel better as well. When I went off of the Vicodin I felt such a fog lift....I would always describe it as a fogginess...I'm not sure people understood what I was saying :).

Lahusky I hope, along with Maa that the radiation treatment side effects were minimal. Write when you're up to it and let us know how you're doing.

[labhusky]

I have just been soooooo busy its ridiculous.  Work can sure get in the way!!!  Tomorrow will complete my 1st week of radiation.  I get up a half hour early (5:30), and its still dark.  Kind of good cause then I can take the dog out in my polar fleece robe and not many people are up then.  The ones that are probably dont care.

So far, rads isnt too bad.  Kind of embarrasing in that you lie on a table and they kind of move you around where they eant you.  Then when everything is just right, they leave the room and you can hear the machine circling to where it needs to go, and do its thing.  When I know that its doing its thing, I think of a white light cleansing my body.  No super big side effects yet.  I cream my skin 3X a day.  I use Jeans cream and her website is  www.jeanscream.com   There is another cream Ive ordered too but it hasnt come yet called Sweens.  Why I need two different kinds?  I probably dont but have read about it through other rads people, and Im kind of blingy.  Jeans cream has aloe vera and Vit E in it.  Speaking of BLING, Maa Ill bet that massage was great!!!  I think I will plan one 2 weeks after my treatment ends in Jan sometime.

Sometimes when I lie on the rads table, different thoughts run thru my mind.  Today it was, "WOW I had cancer.  Thats why Im here."  I just rolled with it and let the thought go.  Monday, I seemed sad and down.  I guess partially because it was the first treatment and I guess I was feeling sorry for myself.  I find some days are easier than others and I can express myself 2 different ways.  The first is which is normal for me, "I had cancer (DCIS), I know this is easy BUT WHAT IF I get it again WORSE."  Then I worry and read too much on some websites about people going thru horrific stuff. The second thought I get is, "OK, I had DCIS.  God is telling me something but is very gentle with me.  He wants me to live and enjoy myself instead of having no life.  He wants great things for me."  You know, like a wake up call and my gut is telling me thats what it is.


With rads, no deoderant except crystal or Ive been using Toms but I havent sweat that much yet.  One lady said that if she thought she could smell something, she would dab a little of that purell hand sanitizer under her arm and it was gone.  Go to use gentle soap too like dove or neutrogena, or similar.  I have aveeda body wash right now.

My ankle is still sore but Im hoping I can at least get started walking this weekend.  ITs a bummer.  That might be partially whats wrong with my head too because I havent really gotten out and moved.  My leg sure itches where the scab is.  

Sounds your holding your own and feeling better.  I dont have Chemo (THANK GOD)!!!  Dare I say, Im still on the fence about the drug.  Hope you dont sick with your cold thats floating around.  

I think before cancer, I felt invincible.  Not like a teenager but you never really think about it untill it happens to you.  Then I guess I get scared.  

I will write more later to both of you.  Got to pack my lunch, and get ready.  SO glad its going to be Friday.  I am taking off 2 days in Dec extra and that might help with my fatigue if I get that.  I figure, its a psycological boost.  I get the 7th and the 26th.  Anything helps!!!

t-belle and maa what are your next treatments going to be?

[labhusky]

Its the weekend and I have time to write a bit.  My first week of rads is over, 5 weeks to go.  I did feel tired Friday but I dont think its rads yet.  It rained very well down here finally.  I got in my car from the hospital at 5 till 8.  The freeways were terrible!!!!!  Stop and go all the way to work.  A commute that would take me 15 to 20 minutes tops on the weekend took me about 55 minutes.  I didnt see any accidents thank goodness but man!!!  Still, no one hardly knows how to drive in the rain, and I think when they see raindrops on their windows, it scares them.  Very frustrating!!!!  

I feel kind of like I am coming down with something too.  I think its allergies though.  Its that irritation in the ears ever so slightly and a little bit in the throat too.  It does feel like allergies and probably a light sinus infection.  The wind was blowing so hard around here when it was stormy, and the recent wild fires we had who knows whats all in the air now.  Today, its gorgeous outside.  Sunny and everything just sparkles.  If I didnt have this head cold, I would go for a short walk.  BUMMMER!!!!!

Its going to be a busy week in that I go see my GP tomorrow.  Havent seen her in awhile.  Although its more of a "bling" visit since she does botox.  Im sure she will want to talk to me though and I have alot of my stuff photocopied for her.  I am hoping she will talk to me somewhat.  Wed, I see another Dr that I go to and will discuss Tamoxifen with her, and give her a copy of my records as well.  Wed a couple of hours afterward, I get my hair done finally!!!

Friday I am taking off which is good.  Friday night in our balboa park area every year (the 1st Fri and Sat of Dec), they have "December Nights" which used to be called "Christmas on the Prado".  Its alot of fun to walk around and get in the spirit.  Im having a little bit tougher time of it this year getting into it and this might help me.  They have a whole bunch of areas where you can buy home made goodies including stuff from different areas of the world.  They have little cottages that form the different countries and its interesting and fun.  Plus they have good stuff to eat there as well, and pretty lights and perfprmers.  It just gets crowded and I like to go early and get a good parking place.  They start at 5 and I get there after 3.  They close the parking lots shortly after 5 and traffic gets bad.

I wish I had you as a neighbor maa!!!  We could help each other greatly!!!  I wouldnt mind having the plumbers equipment and learning to use it but theirs probably more to it than that.  My neighbors are the pits, and we all just stay to ourselves.  Around here, its safer.  The neighbors to my left like to throw trash on my side and they really have no manners to speak of.  The ones to the right face a different street and we dont talk.  Theirs one across the street thats a doozy.  Theirs mom and pop with the 2 grown boys now that have been in jail and or were gang bangers.  Their is one child from one of them and their wife or girl friend that lives their too.  Either one boy or the other is always washing their car or truck and vacuuming it.  I really dont think they work since their parents are there too.  It seems like grandma and grandpa are raising the child more than anything.  A couple of dead beat boys there.  They are probably on probation.  I know what they did but they dont know that.  Sounds like fun here huh!!!!!

Tomorrow, is radiation again.  My skin looks really good and I hope it stays that way.  Even though I am off Friday I will still have to go there nice and early but thats ok.  I wont have to get up at the crack of dawn either.  Wont have to worry about applying makeup.  May go home and go back to bed for a little while who knows.  

Tonight Im going to make a healthy version of Shepherds pie.  Its so yummy and good comfort food.  That should last for a couple of days or so.  I like to cook something Sunday so that Monday when I get home from work, I wont have to cook.

Well, thats my story so far.  Have you put up any decorations?  I havent yet.  Call me grinch.

[t-belle]

I love Christmas time, we went to cut down our tree while it was still nice last weekend....this weekend was cold and snowy. We found this wonderful tree called a concolor...it has a citrus pine smell to it when you break a needle. Last year we discovered it at one of the local tree farms, and that tree hardly shed any needles. We put it outside after Christmas and it was still good for another 2 months. My youngest daughter Lucy was the one to find this one and named it Frank, so no matter what other tree we found she would not be satisfied to leave Frank out in the wild...needless to say he came home with us.

I have a collection of vintange and new nativity scenes so I put those up all over the house, and we'll make the gingerbread house next weekend.  I am finally getting some energy back, which I am very thankful for.

Today I go to see the Oncologist to find out if there will be any further tests or treatments that I will have to go through. I feel a bit anxious, but excited too. I've been told that she is an excellant oncologist.

Well Lahusky, I am praying for you and I hope the radiation continues to go smoothly with little side effects. You're a brave and courageous woman and don't you forget it. That shepherds pie sounds yummy. One of my friends that brought a meal after the surgery made me a turkey burger with mashed sweet potatoes shephards pie, and my whole family loved it.

Maa, Haven't heard from you for a while, how are you doing? How are the expander issues going for you? Your compassion and caring always show through in your posts, thanks for being you!

Well guys blessings to both of you, Teresa

[snowtree]

Is me for a little while.

[snowtree]

How I remember the both of you, with love in my heart.  Maa, sometimes circumstances are difficult, but even though not everyday, I've been having you in my prayers, for you are very special to me, you will always be, may God be with you, specially today, for some reason I woke up thinking about you.  I read not long ago that you were a little sad and down, don't be, because God has many good and wonderful things stored up for you this coming year, may all your dreams come true, this is my wish for a year 2008. About me, not todayI will not come back nor read any comments for a long while, maybe a month or two, who knows, soplease don't reply.  I just want to tell you that you are a special lady, loved by God and loved by me, I have so many good thoughts for you, I wish I can go where God is right now and ask Him to take every bad things away and far from you, but you know that all we can do is pray, so I do.  I will not decorate my house this year, no particular reason, is just that the Holy Spirit don't lead me to do that, so I follow.  I want to tell you, that even though I feel for the other ones in this and the other forum and don't feel the faith that they have in God, compared to yours, because of your faith I know that you will be healed, and because of theirs I don't know, all I know is that God regards those that believe truly in Him, not only when things go right, but also when things go terrible, in this forum and the other two I read about miniature faith in Him, I read about a lot of women only thinking about themselves, not in others, they probably don't even notice that their illness is far more important than their material status, but you probably know what I mean, since is very obvious.  Some mentioned not long ago, they they rather not be prayed about on a daily basis, well actually those are the ones that seemed more needy, according to me, I can not even imagine that praying for someone bothers anybody, but the spirit of the anti-Christ is manifested in a lot of people, specially nearing the end of days.  The way I look at all these, is that when you have any kind of illness, that is the time that you want to get closer to God, not closer to been pampered and be serve, but in every circumstances we should be the servant, you know what Jesus Christ wrote about that in His word, I know that breast cancer or any other cancer or illness can be hard and lonely, but our Lord suffered much more and He still served, even when He was been sacrificed, (cannot imagine) and still asked our Father in heaven to forgive those that hurt Him, becaused they don't know what they are doing, well I am no God or not even an important person, so who am I not to ask God for the same thing for those that are still doubting about who He is.  In the end they will howl, cry, scream and only those that believed will be consoled, but we will not have to give an account for what other believe or not, only about what we believe or not, so Maa let's keep believing in the true God, His son and the Holy Spirit, may you keep all these in your heart, and know that I feel in mine that you are blessed a million times.  I know!!!!!!!!!!  A friend in Christ, snowtree.

[t-belle]

It was nice to hear from Snowtree...it's funny that although she doesn't know me, I feel that I know her from the first post that all of you guys were on together.  I used to read it and was encouraged so many times. All of you have been an inspiration to me.

It is quite true that through this process I have felt a very real nearness to the heart of Jesus...He is always present, always whispering His words of love, always making sure that I am aware that He will never leave nor forsake me.  I'm sure that both of you have had similar situations...I know I could not have made it through without Him...He is so good!!!

I found out today that I will not have to have radiation, chemo, or further testing...the report came back that the cancer is no longer present.  I can only thank God for that.  It is still a journey in terms of the reconstruction process and recuperation(SP).

I hope both of you are doing well!

[t-belle]

Just realized I've been spelling your name wrong...please forgive the oversight!

[labhusky]

T-belle YOU are done with treatment then?  Not even hormonal therapy?  That is GREAT news!!!  Im "jealous".  ((((t-belle)))))    I took today off work because of my cold or sinus infection or whatever it is.  I hate it when I lay down, turn my head to the right then I get dizzy for a little while then it stops.  I have a "filled" head but I 'll be ok.  I did go to rads this morning.  Might as well.  I figure thats a place of healing, my work is not.  Plus, if and when I get fatigued down the road fron rads I dont want to push it now.  Sometimes the bosses at work can make you feel bad about missing work if you let them.  Well, I say no more guilt for me!!!  Ive learned alot this year going through this whole process thankfully the best diagnosis if I had to have it at all.  What type of cancer did you have t-belle and maa.  I was checking previous blogs but couldnt find it.  However, those blogs are better than a novel if one wants to laugh or cry.

I hope we hear from Snowtree again!!!!  Been thinking about alot of those people and wondering how they are.

Tomorrow, I will go to work.    I made an appointment with my reg Dr early January just to "follow up" and take a pro active stance in my health.  Shes easy to talk to.  She made some nice comments today acknowledging Ive been through alot but knew I was a trooper.  She said that if theres a gold lining in this its that I caught it early.  I always feel good after walking out of that office.  I had the botox shots, they can hurt.  Then you have to do a repition of 15 smiles and 15 frowns every 15 minutes for 2 hours.  One cannot lay down for a couple of hours either or it can move around to where one doesnt want it to go.  I get it in the forehead and around the eyes.

Oh, Jan 18th I made an appointment for a full body massage for a hour and a half.  That will be a week after rads finishes.  I figure a rite of passage or a celebration and get all the toxins out.

[t-belle]

I actually had invasive lobular cancer, as well as non-invasive lobular cancer. The doc told me yesterday that because I had both kinds they were able to determine that that was the place it began, and since the lab report came back clear, I do not have to have further treatment...we got it at the very beginning... I think bi-lateral matectamies is trouble enough. :)

How about you, labhusky, what was your type of cancer? Remember to drink lots of water when you go for your massage, all those toxins can be yukky! Isn't it amazing that the rest of the world really doesn't understand this whole process and how much energy it takes...especially radiation, chemo, etc. I was like that too before I went through this. I have so much respect for how you're handling it, you're doing great. I'll pray for your next rad treatment! Blessings

[tamknit]

Sorry it has been so long since I have posted.... it seems you get into this chemo-grind and nothing else matters.  Most days, I don't even bother with the internet.  The Adriamycin/Cytoxan combo is all over (I had four of those) and they were definitely ROUGH.  I am now on the Taxol, (four of those, as well)  I have had one so far... They give you a heavy dose of sedation (benedryl IV) beforehand, so mostly you just sleep for 4 hours while it is dripping in.  Definitely not as nausea producing as the other, though the Taxol seems to cause a strange sort of muscle pain for me, sort of like I just ran a half marathon the day before and am just sore all over.  They call it myalgia... I take a bit of Norco each day and it seems to ease the soreness.  That is really the only thing I notice... Still bald.  Have been styling my wigs like they are Barbie hair... I even cut one of them.  My husband said, "Thats about $100 of hair you just wacked off.  
Also trying to do the Christmas thing, though way scaled back.  We have the usual round of hospital cocktail parties and I was delighted to buy my size 6 outfits... have never been quite this lean and mean.  Though now I have no Butt!  That is a bad thing... Trying to get up the courage to go bald to one of the parties just for fun... but have not done it yet.  Have set up the big Christmas tree, then smaller ones in the kids rooms, so they can look at them at night.  They have yet to write their letters to Santa.  Wish they would hurry up, so I could get shopping.  
It is looking like I won't have radiation, so I will be done with chemo in mid January, then probably back to work by the first of Feb.  I only work 2 days per week as a psych nurse, so it will be good to concentrate on other's peoples problems for awhile.  It will also be good to get back in the classroom to volunteer.  They told me I shouldn't volunteer while I was immunosuppressed.  
So, that is all the news from our household.
I think about you all and hope your treatments are going well too.
Tammie.
PS.  I had both invasive ductal and invasive lobular, and one positive node.    I had a double mastectomy on 9/14, no reconstruction yet.  The cancer was in the Left breast, I had the right one taken as well.  My pain is gone, but I am still numb, probably always will be.  Tam.

[carme]

Wow, talking about going to parties etc...you are feeling better!
Hang in there girl!

[t-belle]

I don't know if you remember me from the previous posts, but I have been watching the last 2 forum posts since September and have watched your journey unfold. I have come to respect and admire you as you have been an inspiration with how you have approached the whole thing. I was even inspired by you to have a "Say goodbye to the girls party"....it helped me to keep a sense of humor through the process..so thanks!

You seem to be holding up well, but I can sense the weariness that you must have at times...only about a month and a half left for chemo though, so hang in there!!  I'll pray for you. I'm so glad that you don't have to do radiation, I remember that before the oncologist thought you might have to, right?

I have to agree with the docs on staying away from the classrooms for awhile...those little buggers carry so many germs. I remember the first years I taught, I caught everything they had.  I am no longer teaching, but my 11 year old Lucy still brings home the bugs..in fact I'm fighting one right now...She is one of those huggy, kissy girls(like her mom) :)

Let us know how we can pray for you. T-Belle

[snowtree]

t-belle you sound like such a sweet lady, you come across that way, and Lubhusky, well, I know you are sweet from before, so.  You ladies are going through so much, and then again, you are fighters and winners in a great battle called the letter "C".  I am amazed that your Spirits are up and I am glad for that, I wish you both the best in your journey.  I can feel your enthusiasm through your writings, I understand that you can be down and sad sometimes, but then again, who doesn't.  I remember Joy Girl, how sweet she is and enthusiastic as well, I miss her, she was and is a great woman, I wonder where she is and what she is doing at the present moment, hopefully dancing and sprinkling her happiness on the world.  I miss maa, she is adorable, I wish the best to all of you.  I will be back every so often, but not often, because I don't have access to the computer like I did before, my children have lots of homework and I have my daughter back from Iraq, and I have a puppy (a toy yorkie), I love her, specially when she does her butt walk, is hillarious, she wants to eat all the time, I mean she eats non stop if you let her.  About my daughter, well, she has to go back to Iraq this week, because of personal issues (I am not allowed to talk about it), but is making me a little crazy, not to say completely insane.  God works in mysterious ways, when you think something is bad it turns out to be for your own good, I mean He closes doors, but opens new ones, and those new ones are the ones that can bring us happiness at the end, everyone struggles in life, we are like babies trying to get up, but everytime we fall, but like babies we should try to get up over and over again.  Well, enough of these, I wish both of you well.  A friend in Christ, snowtree.

[snowtree]

Please, don't write me back, because I might not be able to answer you and I don't want you to get mad.  

[t-belle]

I have been thinking about you gals this week, hoping that your treatments are going well. You guys are a blessing, and I miss hearing from you.  Write and let me know how things are going.

[maa64]

Been very busy. Yesterday went to onocologist. With my type of cancer in situ and invasive ductal carcinoma and grades and PR & ER + but Her2 neg. they did an oncotype test and determined I have a low recurance score of 6% recurrance. The doctor said out of 100 people 6 people would benefit from chemotherapy and out of 100 people who got chemotherapy 1 person would develop leukemia from the chemotherapy. Without the test they would have had me do chemotherapy but with the test they determined that I do not need chemotherapy. I will go on the tamoxifen.
I have had 450 cc in my breast implant. I was a b cup before and don't want to be dragging around more than I have to. I will go to my plastic surgeon in Jan. and talk about a lift in the right breast and a small implant to match the girls up. After 4 kids the girls were quite droopy. I have friends who think I am nuts to mess with the right but they are not the ones looking into the mirror. I would like the girls to be side by side.
I haven't posted because I am totally ready for Christmas. (My friends hate me and I love it!!!! HA!) This is the first year I am totally done at this point.
Snowtree I think of you often and pray for you often! take care.
Labhusky - glad things are going better.
Snowtree you'll like this I was talking to my good friend and said can you believe it when Christ comes (rapture) I will go to heaven and my implant will be left behind! Won't that be funny! Hey where did she go and there will be my clothes and an implant! At least I think; they really didn't write about that in the Left Behind Series.
T-belle what are you doing for yourself as a treat? My massage was good but I really missed the deep tissue massage which she couldn't do.
Hope all have a really good Christmas - will post and let you know how the tamoxifen goes. Really good to hear from you all. I checked the posts last week and not many posted glad to see you all posting again. Take care and God bless.

[labhusky]

Hi Everybody,

I have been so busy and sick.  Yes, I came down with an ear/sinus infection a couple of weeks ago this coming Saturday.  I went to the Dr and got an antibiotic.  It was one of those that you take 2 pills once a day for 3 days and thats it.  I am still sniffling a little but Im not nearly as bad as I was.

It looks like Im the only "glow girl" here, and tomorrow I go for zap #15.  I do get a little more tired now, especially in the afternoon at work.  My skin is a little pink and I can get a little pain here and there but it doesnt last too long.  I think the only reason I can do this is because a good friend went thru the exact same thing about 3 years ago.  

So maa, you are going to actually take Tamoxifen?  I really doubt if I will.  I had DCIS which some people debate whether its pre-cancer or cancer.  They treat it like cancer.  DCIS is one of those that isnt life threatening cause its in the very early stages and hadnt figured out how to grow out of its cocoon and get invasive yet.  Talk about a mixed blessing.  I do say Thank You to God every day.

I did finally join the YMCA like I said I would on the 11th because they waived the joining fee of $100.  That way, its just $37 a month.  I figure when I get a little stronger I will go and try different classes to see what fits me.  I do want a personal trainer and of course thats going to cost a little extra.  I havent been walking for a month because of that darn twisted ankle around thanksgiving and my lovely cold of late.  I am hoping this weekend I will get out and walk.  I feel Im ready and if I dont become klutzy I should be fine.

I need to do a little shopping but I dont have that much to get.  I havent even put a tree up.  Been too busy I guess.  

Ive got to say, that while none of us liked the diagnosis of cancer, it seems that we are gaining the upper hand around the holidays and not just learning about it now.  I feel bad for the ones getting diagnosis this time of year.  

Is anyone tired of the color pink?  That used to be me.  Pink sweaters, pink key ring, such a pink girl, then I get diagnosed.  Now I kind of dont like it.  I dont have a favorite color so much anymore.  Maybe I will grow out of that after awhile but right now, ughhh.  I read a link of the different colored ribbons they have for different diseases.  Brown is colon cancer.  Isnt that gross?

Well, I feel like Im getting a little loopy and silly.  Maybe its the Rads Brain thats kicking in.  I do notice myself not being as sharp as I was and that can be a side effect.  Theirs "rad rage" too but havent gotten there yet.

Tammie, mid January you will have finished treatment.  Sounds like you're close to my target date of 1-11-08.  Thats wonderful and the end is in sight.  WE DID IT,  WE ALL DID IT!!!!

I pray it never comes back to any of us EVER!!!!  I have to say, thats my new fear.  People say it gets better as you go along but I havent been far enough along yet.

Maa, what did your oncologist say the odds were with and without Tamoxifen?  

tbelle I reall hope you're doing great!!!  Its too bad we all dont live close by to each other.  I feel like you are all sisters to me.  I never had a sister and was older sister to a dumb brother which is no fun.  He was all take and no give and still is to this day.

I have thought of all of you alot and got the energy to write to you.  I think the fatigue is worse at work than when Im not there which makes sense.  Plus, I should wear glasses at work and dont so theirs eyestrain too.  Got some stories to tell you about the people at work I come in contact with next time I check in.

Carol

[t-belle]

So good to hear from you guys!
Labhuskey, just the fact that you're on Zap #15 and still working shows how truly amazing you are...being low on energy would be a bit of an understatement for me in your position.  Keep up the good work! The Lord was reminding me about seasons the other day, the fact is, this is a season of our lives that we may have not chosen, but as I watch how you respond to it, I am inspired.

Maa, I have almost caught up to you, I got a fill the other day and am up to 420 cc...it really didn't hurt this time...allelulia!!!Thank you Jesus!!!! I am so glad that you got good news about the treatment plan, no chemo, no radiation too?, don't know about Tamoxifen, but it sounds like some people go into Menopause...I've already begun a bit, I'M 48 and my family already thinks I'm a bit hormonal(always have been around my period...they say I have hormonal seizures LOL)

I haven't done anything too exciting like a massage, or even a hair color, but I did start back to tutoring and I was ecstatic about that. I have been so low on energy and wasn't sure what the treatment was going to be, so I was holding off. She called me yesterday and I'll have 2 kids, about 3 hours total a day for the next few days. I love the one on one with the kids.

You guys are true survivors, and I agree with Labhusky that my hope is that we will be cancer free going forward! I feel it has definitely drawn me closer to the Lord ...just knowing that He is there to go through it with us, He never leaves us or forsakes us, He is near to the broken hearted, His love never fails, He is a constant help in the time of trouble........etc. , etc.!!!

Blessings to you guys!

[maa64]

Sorry I haven't posted in a while, busy with Christmas and when I have the time kids are on the computer.
I didn't think to ask what my chances are without - my surgeon said it reduces reoccurance by 50%. I know some gals do great on it and some can't handle the tamoxifen (emotionally). I hope that I am not in the latter. Yes I will go into menopause for 5 years then she said it might be possible that I get my period again after 5 years. Won't that stink. That didn't sound fair. I am learning to take a day at a time. Won't start the meds until after the new year. I wouldn't take it though if I had a choice. 50% is a lot. I just am trying to prevent going through this nightmare again.
Well I am really tired so I will write more later.
thanks maa64

[carme]

Read some of the latest news about Tamoxifen and genes and chemo that were in the news this last week!

[snowtree]

Maa, Labhusky and t-belle, may you have a merry merry Christmas, may the new year bring miracles, happiness, lots and lots of health, may your future mammos be NORMAL forever, may God turn all your tears into laughter.   May you bring all your burdens to the One that can carry them, may you bring all your problems to the One that can solve them and one more thing I have to say is:  YOU ARE ALL SO BRAVE< YOU ARE AMAZING WOMEN< YOU HAVE FOUGHT THE GOOD FIGHT AND YOU ARE WINNING.  You are in my prayers, because I truly fill it in my heart to pray for the three of you.  So long...   ps  Maa, about the left behind t-it-is, how funny was that, and so true.

[snowtree]

I hope you can read this, even though I will only post like in within two weeks, so don't reply, please.  JoyGirl I hope you know that I miss you and have such good memories of you, you always had something nice to say, you blogged a happy blogging all of the times, many times that I was down you were there to say something positive and I wish you a Merry Christmas and a Happy New Year.  Many blessings and goodwill goes your way, keep dancing in front of your neighbors, because I'm sure they'll be delighted, you are one of a kind, you brought positive energies to us all and may all my positive energies go back to you.   Health, health and more health to you from me.                                                                                                                                          

[snowtree]

Merry Christmas and a Happy New Year.  So glad you are doing good.  Hoping your next mammogram is NORMAL and that you don't have to go through worries for a long time.  A friend in Christ, snowtree

[snowtree]

Merry Christmas and a Happy New Year to you and your family.  I know your faith is strong, you are a woman of God.  May this coming year brings closure to all your health problems and may He bring happiness throughout the year 2008.  A friend in Christ, snowtree

[snowtree]

Your faith in Christ is healing you, He is protecting you at all times, He is listening, all you have to do is pray, because He is not requiring for you to do nothing at this time of your life, only to seat by His feet and tell Him your worries and fears, you are precious in His sight, you are like a jewel full of diamonds, you are unique, wonderfully made, His pride and joy.  Precious maa...   YOU ARE BLESSED!!!!

[t-belle]

Snowtree,Wow! What a gift of encouragement and exhortation through the Holy Spirit you have. Thanks for your words of encouragement, I had a bad day yesterday, so waking up to your prayer for us was really uplifting.

All-Blessings on each of you during this Christmas season. May you all be aware of Jesus presence and love pouring over you...and may you keep your eyes on Him who is the author and perfector of our faith.  Surviving this thing makes me appreciate life so much more, and Christmas with my family is a wonderful gift.

[labhusky]

Hi Dear t-belle, maa, and others too,

I will tell you that I am glad that Christmas is over!!!  I have been in a funky mood and I kind of relate it to post traumatic stress disorder from the cancer.  Though, we are all blessed with the types and stages we had but still, its alot to digest.  Lets have alot of happy years now, enough of this stuff.

I went for zap 21 today, and on New Years Eve they will do a prep for the boosts after administering my normal zap.  I will actually begin the boosts on the 7th and that will be my final week.  I am a little burnt in that its more of a reddish pink but Im not peeling, and as far as being sore?  Eh, somehwat a little but its not like I cant tolerate a bra or anything so Im doing ok there.

Today, I saw my Oncologist regarding the tamoxifen talk.  Maa, he said the same thing your onc said-50% chance.  He also said that when I take it (and he thinks I will and said so like, I know you will), I will have a better chance of not having cancer than the AVERAGE woman on the street that hasnt had it.  

When he first came in the examining room, He said, "hello sunshine." and asked me how I was doing.  Oh nervous me said something like kind of Ok.  He said just kind of?  Then we started on the Tamoxifen.  He sat down in a chair and told me to tell him what concerns me about it.  I brought up strokes and the fact that my father had one, and the clots and thrombosis stuff I talked of.  I talked of the thinning hair but said that was the least of my worries (I forgot to mention the bleeding and thickening of the uterus or whatever and uterine cancer-YIKES).  

He said that I am active and he doesnt see me having problems with clots and strokes, that my father was probably not active (I wish I knew since all I did was read his death certificate).  The Dr said that he has all my info and really feels I will do fine.  That this is a preventive measure rather than using it in conjunction with other treatments like with stage 3 or stage 4 disease in giving them one more year to live.  He said that I will be monitered closely every 3-4 months for 2 or 3 years (I forgot which), then every 6 months, then once a year.  He said that me being 51 that I have 30-35years left (and I chimed in, "at least").  That if someone came in his office that was 78, he wouldnt prescribe it because of the age (then I thought or felt like I would try it at that age).  He said tamoxifen was used for something else too but I forgot what.  I asked him whether it thins or thickens the blood and he said it does neither.  I thought I read that it did.  Im on HBP meds and interference with tamox?  He didnt think so.  He says he has all my history and he really didnt think I should be really worried about it.  I asked hot flashed and he said thats a possibility.  I asked quality of life in general and he doesnt think it will affect it to the degree I think it will.  I said Joint pain?  He said thats those aromabase inhibitors or whatever the ones armidex and those are.  

He wrote the Rx and I am to start them after the rads, and see him in 4 months which is in April.  Then this is sweet I think, I would have never expected it.  I was sitting on the table, said happy new year to me and gave me a little hug and a small peck on the cheek and I also returned it, it was sweet thats all. Im sure he sees alot of patients that dont make it and I believe he cares alot for his patients.

He is a very nice Dr and before I was called in I heard an older man not yelling but just kind of sounding stubborn.  I didnt know or understand what it was about, then I saw my Dr come into the nurses area saying something like he is refusing my advice and or treatment.  The man was with someone.  The woman was at the front counter while the older man just walked out.  I watched that man and thought to myself about him, "dont you want to live?"  The woman seemed neither here or there about it.

I'll tell you, that would be a hard profession to be in, and I couldnt do it.  That dr has seen alot Im sure including alot of those stubborn patients.  As far as my health goes, Im fearful and I read alot on the net.  I told the Dr that I read alot about side effects on medications on the net and he said I should.  

Just got a call from the rads people that their machine quit working this afternoon.  They have to fly a part in and it should get here tomorrow morning sometime but to call them at noon to see if I could get zapped in the afternoon.  That would work for me getting out early at work.

I did make an appt with my gynecologist for early Jan (16th) and talk Tamoxifen with him regarding the endometrial build up and Uterine stuff.  Im not like dead set against it now but I still want more info on that.  That Dr today made me feel a little better then when I got home, I went for a mile walk because Im ready to be active again.  Ive been dead weight long enough.  I walked 2.5 miles yesterday because I was off which was nice.  I see my primary Dr Jan 8th.  I told someone at work today that Im tired of Drs appts and she said, "Ill bet you are."  But after that talk with this dr, I feel more like taking a preventive measure than bury my head in the sand.  Most people dont see their dr enough anyway even when they are younger and on their own.  I would only see mine when I got a cold.  Hardly ever for a check up.  Guess I should be glad that I had a wake up call (he and my surgeon both call it that).  

Anyone doing anything special for New Years Eve?  Im no revelar, I think I will walk New Years Day instead.  I like to do that.  I used to party somewhat although at home and be sick the next day.  Then I thought, this isnt any way to start a year feeling like this.

May God bless us ALL!!!  WE deserve some WONDERFUL TIMES now!!!  Talk to you soon, this is a mini novel.

[carme]

Glad to read you are doing well. Happy to read what you were informed about Tamoxifen.
My mom had her first breast cancer at 56 and then again at 69. She took Tamoxifen for 5 years, starting when she was 69. She had gone thru menopause in her 40s, but still suffered from hot flashes. She suffered from them until she died at 80.She died of Ovarian cancer,but  we have the BRCA2 mutation, so ovarian cancer is/was a greater possibility (yesterday's news verified that with the fact the Hispanics are more suceptible too and we are Hispanic).
When I took Tamoxifen in the City of Hope Trials for 4 years, I had occasional night sweats. I was also nearing menopause, so who knows.
Try it. It might not affect you the way you fear. For now, it is one of the only drugs we have to fight off a reoccurence.
If a doctor gave me good evidence that cutting off my leg would help me from having a reoccurence, I'd let him do it, that's why I had bilateral mastectomies.
  I want to see my grandchildren...heck, I still have 18 and 20 year girls to marry off.
Choose life, God has given you the knowledge to do so.

[labhusky]

Carme got a couple questions of Tamoxifen for you, hope you dont mind.  Did your hair thin alot?  I kind of have fine hair and that makes me nervous.  Also, your mom didnt take it after her 1st breast cancer?  And did she have the ER/PR positive on the first one too?  Hope I dont seem nosey.  I kind of wonder about my friend that had what Im going thru now.  Her surgeon didnt even recommend it and she asked him.  She wasnt assigned an Oncologist either.  She has Kaiser health care and Ive always been leeary of Kaiser because Ive heard alot of bad things and getting in and out of there sounds horrid too.  I guess they move them around like cattle.  I tot want to do more things in life carme, I want to get married.  No one YET but Im hoping that their is LIFE after this and I dont want to hibernate in fear waiting for the "other shoe to drop".  Im thinking that maybe with tamixifen, it would make me feel a little more confident and a little less worry.

Have a continuing story here from the call from the people saying that the machine wasnt working.  I did call them around noon from work because of course I was looking of an excuse to leave early on Friday.  It was working so I got there around 3.  Some people that are normally scheduled there in the afternoon were there too.

One of the techs comes out and says to everybody that they are having computer problems and that it could take 10 minutes to see if they can continue treatments.  Ok fine.  He came out again not long after that and said that they will be able to do some treatments depending on what field they need to use for that person and/or how long the persons treatment is.  One man there has 10 minutes for a treatment.

They called everybody that was scheduled in the afternoon first which was fine with me.  Finally, my turn.  I got on the table, and they arranged everything according to the calculations for my treatment.  They left the room and I heard the machine humming on one side of my breast.  Then the machine moved over to the far left side to do the treatment on the other side of my breast.  It didnt do anything.  

A tech walks in, and I said, "I broke it."  She said, no that it seems that the machine doesnt work on the far left because she had a patient that also needed it on the left and the same thing happened.  They said that they will mention to the Dr about my half a treatment and see if I should get an extra zap (my wording), or continue on with the schedule since the Dr will be there Monday.  So I have had 23.5 treatments so far.  Thought that was funny.


t-belle, maa, tam, snowtree, carme  love you all!!!  God bless you all!!!  Thank you for being here!!!

Carol

[snowtree]

Labhusky, your mini novel is very stimulating, I don't have words to say to you, only that you are one tough lady, you are also very smart, because you like to be informed and are pro-active, which is very, very good.  I don't know much about tamoxifen, but I know a couple of ladies that are taking it, and they don't have any complain about it, I always make sure to ask them if they are taking it, I don't know why, but that medicine (tamoxifen) is always in my mind, one lady has been on it for 1 year exactly, another for two and another for 5 years, she was cleared from cancer on October of this year, she is my brother-in-law's sister, she is 52 and looks like she is 40, she said that she took the news very bad in the beginning, but that now she is strong and happy, full of life, and I mean it, she looks better now than before.  Labhusky, you have a great spirit, I know that you are going to come out of this triumphantly, I know that for sure you are going to have better, happier days, all these will be behind and you will be able to marry,  or be single and enjoy life to the fullest, because God knows all you have gone through.  Even though I didn't have cancer I've had my troubles with this disease, my surgeon called me a couple of days ago, (not her, but the appointment lady that works for her) and told me that my surgeon wanted me to have another mammo on March 3, she actually told me on the first week of February, and I said WHAAAAAAAT????  I can't believe it, you messed up my day (I told her), it was the day before Christmas, on the 24th, and I got a little bit annoyed and told her, ok, just give me the appt. for the beginning of March instead, well the thing is that we are all on this boat, and we know that we know that there is sufficient sadness and stress along with all these, so hopefully this coming year will be a great one and healthy one for us all, and like you said before, may God bless us all.    HAPPY NEW YEAR!!!

[snowtree]

HAPPY NEW YEAR 2008!!!!!    Hopefully this year is going to be a great one, full of nice surprises, joy, happiness, goodwill to us all and the blessings of God in each one of our bodies, specially our breasts and ovaries, may every good thing happen to us and may we have the joy of the spirit and be contented even if we don't have a reason to be, because each day is a gift from God.  Sometimes when we are down is because we have too much in our plate, let's put the plate down, relax, close our eyes and be still for a little while, because sometimes tireness is the root of all evil.  Love you all the same.     A sister in Christ, snowtree.

[carme]

Hi, sorry for wait. We get out and away as much as possible...gotta do it now, not someday.
My hair did thin.  I have strawberry blond/red hair and definitely saw changes.   BUT, it came back!
Not only did it come back but, it is wavier and at almost 55 yrs old, still got great coverage.
My mom's first breast cancer was in 1976. She was 56 and Tamoxifen was not quite ready to be prescribed for breast cancer and she was with Kaiser (I have my opinion about Kaiser, BUT, they somehow kept her alive for another 24 years).
I was very adamant about her mammograms, having helped her bury her mother and younger sister (44 yrs old and 71 years old and dying 14 days apart).  When she said she felt something, we were in the doctors office in 4 hours.
Talk about the differences from 1976 to 1989 (her second breast cancer).
The male surgeon in 1976 did a fine butcher job on her chest with a "total" mastectomy, leaving flaps of skin, tags of skin etc. from the large incision. He declared her cancer-free and in no need of radiation or chemo since her cancer was so small.
I don't have and have never seen what the biopsy was or labs revealed.
In between the 2 breast cancers...13 years...she did have surgery for colon cancer.  Again, an early detection and just a re-section of the colon.
She had her yearly routine mammograms and 10 months after her 1988 mammo, Kaiser notified her that there was a "suspicious node" in her mammogram that should be followed up.
This time the biopsy and surgery were performed by a younger female surgeon. What a difference in surgical techniques.  Again, no radiation or chemo prescribed...but tamoxifen was.
I'm sorry, but I have never seen nor inquired about my mother's labs on her breast cancers.
We did have a Kaiser surgeon tell us her "colon cancer" had reoccurred and spread in 2001.
So when he came out and told us that and told us she had 6-9 months to live...we believed him. After all, he's a doctor, "PRACTICING" medicine.
She died 5 weeks later in the agonizing, horrible, painfull death I was trying so hard to keep her from by being prudent in the self exams, checkups, mammograms!!!
This time, I got the labs.  She died from metastasized Ovarian cancer. She had the BRCA 2 mutation.  So do I. So does my younger sister.  This was Feb. 2001.
I got in that Tamoxifen trial BCPT http://www.cancer.gov/clinicaltrials/digestpage/BCPT at the City of Hope in 1992.
I found it in a newspaper article and knew I had to do it because of the previous deaths in my family and my mother's cancers and because I have 3 daughters.
I was willing to take that risk and I always told my husband that someday he might lose those 38 DDs, because if I was ever diagnosed, I would tell them to take them both off!  And I did in Dec. 2003.
I was 39 years old, not quite ready for menopause, but who knows?  My mom started menopause at 42.  She suffered (I have them but can't say I'm "suffering") from hot flashes until the day she died.  That was 38 years of hot flashes!  
I had a total oophrectomy and hysterectomy because of that BRCA 2 deal in 2004.
I can't say my life is much different now than in 1992.  I was starting to have night sweats then, have graduated to hot flashes, back to night sweats and thank the Lord, they seem to be tapering off finally.
Keep up on all the news about breast cancer. Don't ever let your guard down.  Stay proactive, be prudent. After all it's your life and God gave you the knowledge to stay healthy and alive
May God bless you and help you make the right decisions.
Carme.

[snowtree]

I am glad that you found out about the BRCA 2 mutation and did something about it, like a full mastectomy, the removal of your ovaries and a hysterectomy, those were wise decisions and an example to your younger sister and three daughters.  I am not glad that you had to loose your mom in that way, how can a doctor give a wrong diagnosis and therefore a wrong prognosis.  Carme, look at it this way, your mother left a great legacy to her daughters and granddaughters, a world of opportunities to find out all you can about this disease named "cancer", because of her you found out about misdiagnosis, that it could happen, about getting a second opinion about everything (not related to cancer, but I just got a second opinion about something that happened to my 15 year old son and just saved $11,000.00, yes, I'm talking about a dental bill, in one dental office they told me it was $16,000.00 and in the second opinion that it was $4,500.00 to be exact.  The second opinion dentist is even a better dentist in a better part of town).  Well, the best for you, your sister, your three daughters, and may God bless you all and give you the wisdom that only He can give.  snowtree

[Kat822]

I just read all the comments on this site for the first time this afternoon and found them to be comforting - good to be able to hear from other women who are going through this very difficult battle.  

I had a double mastectomy reconstruction with expanders on
Dec. 3rd.  Like you, Carme, I too have the BRCA2 mutation, and have seen my younger sister, my mother and my older sister, who also have the mutation, go through 2 bouts of cancer a piece in the last 7 years [breast, ovarian and melanoma (50% increased risk with the gene)].  I was preparing for a prophylactic double mastectomy and had made my second appointment with a PS when they discovered a tumor from an MRI that I should have scheduled a good 3 months before.  I met with the PS and had surgery less than a week later.

So glad that I had a complete mastectomy because they discovered two additional tumors in the cancerous breast that had not been detected by the MRI and because of "clean margins" may not have been discovered during a lumpectomy.  I had the other breast removed to prevent any cancer in the future.

My tumor was an invasive ductile carcinoma, grade 2, stage I.  Despite having a prophylactic oopherectomy in 2005 and going through surgical menopause, the tumors were highly ER and P positive.  Nothing in the nodes, but the growth had spread beyond the duct - which they describe as "evidence of lymphatic/vascular invasion."

I had the oncotypeDX test and came out 24!!  One higher number and I would have been told I absolutely needed to have chemotherapy.  However, I have elected to do it anyway just to reduce the risk of reoccurrence which is 15% with hormone therapy to about 10%.  I must admit I am terrified having seen the impacts on my sisters.  I feel like a wimp since my older sister has just finished 18 very toxic, aggressive chemo treatments with the City of Hope to eradicate a return of her ovarian cancer.  

About the expanders....I did not suffer from a lot of pain after surgery, but my PS placed them in front of my pectoral muscles, not behind, so I think that made a difference.  I think it also made a difference in how I looked after surgery - I had only about 200 cc in each breast, but I looked very much like myself (small B cup), but with a few "wrinkles" at the top where it was clear that more fluid would be needed.  I also had a nipple sparing procedure, which I am so grateful turned out well.  However, I did get some capsular insulation around the holidays that made my "breasts" full and tight, rather painful and rather hard.  I am not happy with that, although I look ok in clothes.  They don't feel natural though, like they did at first.  Has anyone gone through that?  Also, it has only been about 6 weeks since surgery for me - and I was told I can resume all activities including running (which I haven't started just yet)   What exercises have you all been given to do?

Just to give a different perspective - my entire family was treated at City of Hope - however, I have Kaiser and must say that knowing as much as I do about the cancer process because of my family history, have been very pleased with my surgeon, the work of my PS and the two oncologists I have seen.  I think Kaiser can be great if you "shop" for the right docs.  However, I am still uncertain about what to expect with this new hardness and am about to get a second opinion from another PS on what I can do to reduce the capsular insulation.  I read in a brochure that 1 in 3 women experience this.  I guess I must have glossed over that part pre-surgery.

FYI - I will not be having tomoxifin, but another newer drug that is being used for hormone therapy that starts with an "a" - sorry I can't remember the name.  It supposedly has less side effects.  I am still worried about its effects on my body, but Snowtree - your comments about the women you know who have been on tomoxifin were encouraging.  My family has never been able to take hormone therapy because they all have another mutation that makes them susceptible to blood clots.  So I will be the first to try it.  

Anyway, sorry for such a long novel, but would love to hear from you Carme as you and I seem to have similar family history, as well as from any of you other strong, courageous and caring women as we go through this battle together.  Any suggestions on exercises or how to break up the scar tissue that I hear causes this relatively new hardness would be very appreciated.

Kat822

[carme]

Hi, just read your post.  I will get back to you soon. I have my grandkids here tonight and can't really concentrate on answering your post. God Bless you, will post soon.
Carme