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Breast Cancer (Expert Forum)
Intramammary Node vs. Sentinel Node, course of therapy and prognosis
Answered by
Cleveland - OH
Questions posted in the Breast Cancer Forum are answered by medical professionals from The Cleveland Clinic. Topics include Breast Biopsy, Chemotherapy, Hormone Therapy, Lumps, Lumpectomy, Lymph node dissection, Lymphedema, Mammograms, Mastectomy, Radiation Therapy, Reconstruction, Self Breast Exam, and Surgery.
Intramammary Node vs. Sentinel Node, course of therapy and prognosis
by Concerned Son #1, Sep 21, 2007 10:23AM
My mom had a mastectomy on her Right breast last week and I am a bit confused by the findings. It was a 1cm mass, grade 3 tumor and they took 16 lymph nodes for dissection. The sentinel node and all but 1 lymph node came back with no cancer cells. There was an intramammary lymph node in the general location of the tumor that came back showing some cancer cells. I am trying to figure out what this means in terms of her treatment that will be needed (ie: chemo regimen) and her overall prognosis (ie: are folks able to survive this and live for a long time afterwards? how long?). While I know that biopsies aren't supposed to spread cancer cells, her biopsy caused a very large hematoma which lasted for 10 days until the mastectormy. I am hoping that (maybe) the intramammary node was positive for cancer because it picked up cells from the hematoma as a result of the biopsy and that the mastectomy effectively got rid of all cancer. (her bone scan and CT scan came back clean). My questions are:
1.) how do you interpret the finding of the lymph node situation as described above? (ie: i know there is about 5% false negative for sentinel node and about 20% incidence of a postive intramammary node)
2.) what chemo regimen will they likely prescribe (length and type?)
3.) how hopeful can our family be at this point that mom will be around for the next 5, 10, 15 ,20 years to see the grandkids grow up?
Sorry for all the questions, but as you can see, I have been Googling like crazy for the last 2 weeks and not sleeping much. Thanks and God Bless. This is a great website.
1.) how do you interpret the finding of the lymph node situation as described above? (ie: i know there is about 5% false negative for sentinel node and about 20% incidence of a postive intramammary node)
2.) what chemo regimen will they likely prescribe (length and type?)
3.) how hopeful can our family be at this point that mom will be around for the next 5, 10, 15 ,20 years to see the grandkids grow up?
Sorry for all the questions, but as you can see, I have been Googling like crazy for the last 2 weeks and not sleeping much. Thanks and God Bless. This is a great website.
Doctor's Answer
by Cleveland Clinic, Sep 21, 2007 12:02PM
, Sep 21, 2007 12:02PM
Dear concernedson#1: Hematomas are a complication of a procedure, they do not spread cancer cells. There is no evidence that breast biopsies spread cancer cells. Sentinel lymph node biopsies are done because it is believed that as cancer cells migrate, there is a higher chance that the first or second node will be positive than nodes that are further down the chain. Experience shows that it is not uncommon for there to be “skip” metastasis, where a node beyond the sentinel node is positive. It is also possible for an intramammary node to be positive. In any case, the information that is important is the number of lymph nodes that are positive, the size of the tumor and several other factors about the tumor that will be analyzed by pathology. This information, as well as your mother’s health, will help to determine the chemotherapy regimen. Her doctor will be best equipped to discuss the specific regimens that will be recommended as well as the duration. He/she will also be best qualified to discuss prognosis as it relates specifically to her situation.
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I agree with your comment about the group network on the other thread. I am glad that they have such bonds. That is how I feel about you and Boninclyde but like you said, there are not enough hours in the day for all of the posts. I hope that both of you know that I keep you in my prayers (without the daily reminder).
My mammo is scheduled for Oct. 18.I always schedule it well in advance so I can pick my time. I forgot to ask if Dr. Anderson would be around to read the mammo so I don't have to go through the mess I had the last 2 times. I suppose I should call back and check. I feel good about the mammo, knowing there's a very good chance that everything will be ok, but I'm always anxious to get the results.
Ziggy, I pray that your appointment goes as well as it did the last time. Let us know when the appointment is.
I have set a date but I feel like I am being so selfish. If something were to happen my kids may hate me for not being there for them. Probaly goes back to my own childhood. I am sorry I can't explain it. All I can say is I just fell like they would fall apart without me. Or maybe have a party. No just kidding. Anyway like I said I can't help but feeling selfish all because I want a boob.
I do hope ziggy's heart gets regulated. Ziggy's not that old I dont' believe.
And Montana, I hope the best for you on your next mamo. The day before my surgery. Once again we find ourselves on this journey together. Take care. I'll keep you posted.
Thanks for your good wishes, too.
My cardiologist feels that my rapid heartrate is all anxiety related. I have not been able to do a regular stress test because I get too nervous before I have to get on the stupid treadmill!!! He gave me a scrip for 5 xanax so I could try it to see if it would calm me down enough for the test. I think that I am going to save them to take before my mammo-which I have to schedule for October.
I cannot believe that we are all on the same schedules...it is a little weird. I sometimes think about some of the others that I remember from last year, Under Forty Pam and Avid Hiker. Have you seen any posts from them? There was another woman, I think she had a name referring to being a grandmother. Do you remember her?
Montana-Like you I will request an appointment on the day when the radiologist who spotted my DCIS is working. I agree that having the same person look makes a difference. I get nervous just writing about this. Sorry to be such a baby!
I wish we'd hear from the other gals, too. I think they come back on occasion, but I don't have the same connection with them that I have with you two.
I didn't realize you have MVP but I'm glad you have medicine that helps. I don't feel either you or Ziggy are babies. I think women are more emotional and you've both had plenty of stress in this past year to be emotional about.
Thanks for the update on UFP, AH and Naim. Glad to hear they're doing well.
Boninclyde - sorry to hear about your losses. Life can be overwhelming sometimes. It is hard to understand and put it all together. I pray for God to strengthen you. I am so sorry. Truly.
My surgery is scheduled for October 12th. Everytime I read these posts and am amazed how 1 in 8 women will get breast cancer and then I just realized how many have to go through biopsies, mri's etc. and find out they are benign. It seems to me that breast cancer whether benign or not will probably effect every woman one way or another. That is sad.
God bless you on this thread. Your burdens seem heavy, so glad you can support each other.
I'm glad you posted your surgery date. Are you having a partial or full masectomy? The women on this thread are a great support, too, and both of them found out they had cancer last year.How are you feeling about the upcoming surgery? You're in my prayers daily, along with labhusky, mistyb and tamknit.
Boninclyde-please know how very sorry I am for your loss. I will keep your friend and her family in my prayers.
There is a good pamphlet from ACS that discusses mastectomy recovery, exercises etc.. I didn't feel like doing much of anything for that first week. Staples came out on day seven but I still didn't have the dexterity to manuver my car in some situations so I didn't drive for about 2 weeks. Both my surgeon and my oncologist were very pleased with my quick recovery so I think I did better than most.
NO lifting over 5 lbs for a couple of weeks, A gallon of milk weighs 8. We bought half gallon containers for awhile. Wet laundry is heavy, be careful. I made a couple of dumb moves on laundry day and had to use Motrin and ice.
I couldn't lift my arm above shoulder level for over 2 weeks. Move frequently used top shelf items before the surgery.
I precooked for a couple of days and then my friends supplied meals for several days. My niece came over and helped in the kitchen because most stuff was too heavy to carry/lift.
I am a health walker and the doctor wouldn't let me try walking until the 8th day. I barely made it to the end of the block on the first try and it took me almost 7 weeks to get back up to 3.5 miles daily.
I slept sitting up in a recliner the first week because laying down wasn't comfortable. I laid claim to all the spare pillows in the house to prop the arm on the surgery side and put behind my back.
If ACS Reach to Recovery doesn't give you one, get a small really soft throw pillow to use in the car (between you and the shoulder harness) the first week or so. Have it with you when going to the hospital for your surgery.
I returned to work at 3/4 time the 3rd week and full time the fourth week but my job is mostly at a desk and I had co-workers who mothered me for about 3 weeks.
I am someone who always pushes the envelope on limitations so I tried to recover as quickly as possible. LISTEN to your body, it will speak loudly. Respect what it says as you heal. I will be praying for your recovery. God Bless
Last night I went to "My Inbox" at the top of the forum page and typed in maa64 to contact you. Maybe you can try doing that to contact the others and let them know you're on a new thread. I know how important the support of others is to you, especially right now before your mastectomy.
Maa, I am sure your surgery will go well. Recovery time varies. If your shampoo bottle is small or not full, I am sure you will be able to lift it. When I mentioned the shampoo, I meant it as an example of items that may be heavy when full and when combined with other like items, can make a shopping cart hard to push right after surgery. Probably a good idea to stock up on those type of items before surgery. :)
Well, guess what I just found out. All this time I have been saying I had a lumpectomy, I have been using incorrect terminology. Apparently a lumpectomy is only if the abnormality removed is cancerous. Even though the pathologist said the surgeon removed a mass the size of a golf ball, because it was benign, it is called an open excisional surgical biopsy. While the surgeries are basically the same, the wording is quite important when dealing with your insurance company. The pathologist also mentioned that the surgeon should not have removed such a large mass and should have just stuck with the original plan of biopsying the microcalcification. The pathologist just happens to have a daughter who goes to school with my son and I bumped into him the day we had parent/teacher conferences. His wife was the radiologist who placed the wire in my breast. They both specialize in breast cancer. Well, this news is interesting considering how much discomfort I have had since the surgery. I have experienced shortness of breath and swelling and pain along my rib cage, around to the edge of my shoulder blade and above my clavicle and up my neck. I also have all the typical tingly, numbing, and sometimes needle poking sensations in my arm. My mom, who has had a lumpectomy, kept telling me that what I am experiencing is not normal. After getting to the point where I just can not take another day of constant discomfort, I called my drs. office and spoke to the nurse. I have an appointment tomorrow. Hopefully, there is something that will relieve this quickly.
Any questions?
Love you guys.
Tammie
PS. The mastectomi (plural for me) was not so bad. I am back with full range of motion in my arms, no signs of lymphadema, and because my surgeon is a GOD, no staples, just clear internal sutures which will disolve. REMEMBER.... NO STAPLES... if possible.
Tam
Montana and Ziggy - I had to cancel my surgery. A long story but I don't have the money now. Going to see someone new week after next and hopefully can reschedule in January. Don't know how after being Christmas but maybe I'll ask Santa for some new boobs. I will explain more later. I am very disappointed but I believe things happen for a reason. ziggy hope you do well at your appt.
tamkit be sure to tell the doctor about the extreme nausea. They should be able to keep this under control. They must yu don't need to get to weak. They will chagne some things around for you just tell them. It is very important that you do not pre medicate yorself! At my facility they gave a calss (1) on how to wear hair and makeup then gave out lots of expensive make up and pretty bandannas and scarfs. Do you have a wig or not going there?
maa and tamkit if you need anything at all and there is any possible way I can help you send me a private message. I mean it, anything that I can do. Even if you only need my shoulder. You will be puzzled by the mix of emotions. I know how hard this is but you will get through it and next year will start to be only bad memories.
Yesterday, I made mac N cheese, and made that apple crisp. NO, Im not nauseous at all. I do have a big white plastic type bandaid over my l one and I dont take it off till I see the surgeon Thursday.
I heard nothing but wonderful comments about my surgeon. Her father was a surgeon and retired a couple of years ago, so she worked under him. She certainly cares about her patients and leaves definite instructions with the staff as to what to do for them and also writes instructions on the charts too as she did on my post op one. I feel better its all over now, next are the margins.
tamknit - So glad to hear your recovery is going so well now. I hope the upcoming chemo treatments get better.
boninclyde - I know it was really difficult for you to schedule that surgery, so I'm really sorry you had to cancel it.
labhusky - I'm glad your procedure went ok . I'll pray for good lab results.
Tamknit - your strength is amazing. You are so matter of fact. I continue to pray for you.
txgirl01 - thank you for all the advice. practical advice, realistic expectations. I know a lumpectomy is different so I really wanted someone's guidance that has been there and done that.
So glad I found all of you. Answer to prayer. God bless.
Ziggy - no you understand what it could all mean. I read an article where women fear bc more than ovarian, HIV, heart attacks,etc. You are not being silly at all. I'll pray for you.
maa I have not really had any side effects from the tamoxifen. I do have some muscle/bone pain and just a few hot flashes at night. Nothing I can't live with. I became terribly depressed but not from the tamoxifen. My periods have stopped which I don't miss them. Are you planning on taking the drug? If so when do they plan on starting it? As far as being realistic, cancer/treatment is not one size fits all. Thought you'd find the pant thing funny. Believe it or not alot of women must do that because thats the advice people kept telling me. What area are you from? Or if you'd rather not say thats fine.
Did anyone hear in the news about the women who had the double masectomy at her doctors advice and it turns out she did not even have cancer? What a mess. If not you can read about it on GMA.com. Thats why second opinions are so importmant.
Thanks for all the advice. I would be one not to remember I had something pinned to my pants.
Hopefully that woman is getting a lot of compensation for their mistake. How horrible. Gracious. not just loosing your breast but the emotional upheaval. Glad I got a second opinion and am more comfortable with my second doc.
Take care.
Ziggy- please think positive and for healing. It is hard I know but surround yourself with positive happy things. Let us know your results.
"To calm down fast, put the tip of your thumb in your mouth, make a seal, blow while puffing out your cheeks, and hold for 5-10 seconds. The increased pressure in your chest cavity stimulates the vagus nerve - a cord that runs from the brain to the abdomen - limiting blood flow to the heart. The instant result: a slower heartbeat. 'We ask people to do this before we give them medication,' says Ben Abo, an emergency medicine specialist in Pittsburgh. 'And it works just as well for everyday jitters.'"
Ziggy and Maa - I'm still praying for both of you with your upcoming mammo and surgery.
In return, please know that you all are ALWAYS in my prayers. I begin and end each day with thoughts of you all on this site.
Thank you again. Please keep me posted, maa64 with your upcoming surgery, Montana, your upcoming mammo, and Boninclyde with your decision (or rahter your insurance company's decision) about your reconstruction. I think I need a beer!
Ziggy
Ziggy, so glad your mammo went well!
Labhusky, How is the recovery process coming along?
Tam, What costumes did your kids pick out for Halloween? Bud decided on Zorro. You should be a superhero!
Maa, Prayers and hugs for Friday!
Montana, Wishing and praying for the best results from your mammo next week.
The other two posts had all my well wishes plus a 'venting' regarding my right breast. It was that time of the month and I was very emotional to say the least.
Tomorrow I go in to see my dr. again. Last week he gave me some anti-inflammatory pills to take to make the swelling in my neck, shoulder, and back go down. The swelling in those areas has only increased and now the swelling is traveling up to my jawline and putting a lot of pressure on my ear canal. The pain by the end of the day is so frustrating and another reason why I was feeling so emotional last week. Aside from the hematoma, the anti-inflammatory did help reduce a lot of swelling in my breast that I did not even know I had. Now it looks a full cup size smaller than the left. Oh joy. lol Well, hopefully, my dr. will figure something out tomorrow for the rest of me. He saw my Mom today and she told him she was concerned about me and the swelling increasing. He told her that he thinks I may still have a bleeder. Considering today marks one month since my surgery, I don't think still bleeding is normal. Hopefully, there is an easy way to make it stop.
Well, next chemo in 4 days and counting.... hopefully will be better.
maa- good luck on Friday, remember ask about the staples... ask for the sutures. The drains are tough, I had 4 of them for 10 days... but still managed to go to soccer games, kids school, and even a funeral. It's amazing what you can find to wear. Those empire waist shirts are the best. And then a camisole to pin the drains to. I guess I'm lucky that I had both breasts removed. I don't have to wear a prosthesis or anything. I am just flat chested, which actually doesn't look too bad. Without clothes, however, kind of strange because of the missing nipples. It's not that painful, just odd feeling, pressure and numbness. Remember to do your stretching exercises 3 x per day.
Post as soon as you can.
Be well all,
Thats all the news from the front lines....
Tammie
mistyb - Let us know how your appointment goes. I hope the bleeding stops soon! How large of an area did they remove?
Tammie - It's great to hear you're so active and enjoying your "week off." lol
Tam, You are so amazing! ...And so is McDreamy. If he has a single brother, can you let me know? lol
Montana praying for your mammo what day do you go?
Tammie - you are such a gal. quite positive. Thanks for the advice. My kid is going as wolverine and my daughter as a pirate. I think your husband is smart for asking did you wash your hands, staph infections, etc. Do I buy a larger camisole? I didn't buy any and to send my husband out well that would be funny. Maybe one of my friends could do that. I can't believe your jogging 2 miles a day. Wow.Amazing.
Misty - I am praying that bleeding stops asap! Let us know.
This may be my last post for a while, they'll call this afternoon with the surgery time. Could use any and all prayers.
Boninclyde - may need to post you for info. KIT
Maa - I'm praying for you and your medical team. Tomorrow morning imagine bear hugs from all of us.
Labhusky, did you ever tell your mom? Forgive me if you already posted that info. I've been out of the loop for a while.
Here's a question. My biopsy was about 6 weeks ago now, My breast still feels weird, is that normal? It was also very bruised afterwards, while the bruising went from dark purple to yellow and faded, it is now gray in the whole area where it was bruised. Any thoughts if that is normal?
I don't really care if it stays gray, but I notice it and it is a constant reminder. I guess none of us will ever forget our experiences here. I know I am a changed woman and am happy to have so many new "friends".
Tamknit - Go Pink Ranger! Maybe you should consider selling MK cosmetics on the side, go for a pink cadallac.
MontanaGirl - Have you had your mammo yet? Again forgive me if you already posted that.
I'll catch up!
All - Praying for you every day.
JoyGirl - Welcome back. I hope your trip goes well.
Maa - Thanks for having your family let us know how you're doing. Praying for a speedy recovery.
I wonder how Labhusky is doing. She checked in once since her lumpectomy so she knows where we are. I hope all is going well with her recovery.
Mistyb- You are going thru too much here!!! It sounds like lymph nodes although he said he didnt take any out. Could one have gotten nicked? I think too much, read too much and worry alot and it certainly sounds like symptoms from nodes somehow. I hope your other exam goes well. We dont need more excitement do we? In July, I had a polyp down there removed, turned out to be nothing and it looked like a shitake mushroom. I wanted to see it. My symptoms were bleeding when I wasnt suppose to, and it sounded reassuring when he was examining me and found that.
JoyGirl- Woohoo glad to see you. I bruise very easily as you will see later in this post.
Tamknit- Wow, running 2 miles thats wonderful and you have a wonderful support system!!!!
Montana Girl- Hang in there, arent "responses" something? Glad to see youre doing well.
I got my pathology report, and saw the dr. My margins are clear, single tumor focus, the diameter of it measured 8MM, microcalcifications =moderate, the surgical margins were 14MM. No node testing was done on me and I wasnt expecting any. Solid and comedocarcinoma type, High-grade (NG III with necrosis). Does anyone know what solid cells are? I know cribform and comedo.
When the dr took of the bandage, she noticed I had alot of bruising, and is keeping me out of work till the 30th of this month. I go back to see her the 29th to see how Im healing. I still have a small bruise in my left arm from the MRI a little over 2 weeks ago. But, last Friday when they drew blood out of my right arm, that bruise is gone.Weird huh?
Next Thursday, I meet with Dr Onc again. I am leaning on No towards tomaxifen IF that is brought up. Some Oncs use it and some dont even for the high grade, so nothing is set in stone on that one. I know Im having rads!!! I will see him probably for an eval 11/7. I must say, its a big relief to have this part behind me and no re-excision, and its nice I can take it easy and relax for awhile. I was expecting to bounce back quicker but Im naive too.
labhusky - I hope your energy returns. A 30 min. walk sounds great. It sounds like your pathology report turned out pretty good (but I'm no expert at reading that language.)
check back with you all later. Very tired.
Take care all and thanks for prayers. Just sitting waiting on my body to heal.
Maa, take it easy, the soreness passes into numbness... then it feels okay. I am still tired, but it's getting better, start pushing yourself just a bit in a couple of weeks. Did you have reconstruction already? Will you have chemo too?
Thats all for now... time to hit the couch and the movies!
Tammie
I do admire your courage Tammy - it is amazing and I do draw strength from you and am praying for you. Thank you.
tamknit - I'm glad your drug regimen is working. Sounds like you have a mini-pharmacy at your house! Enjoy those movies.
Where do you hail from? We are in the great state of Idaho, home of the wide stance!
Do you fingertip wall exercises, even if it hurts and feels funky.
Write soon.
Love to everyone else. Good luck on tests and decisions.
Tammie
We do have a mini pharmacy, every antipuke made, not very complete if you happen to have any other ailment, though.
Keep fighting Montana. Great they are cautious. Think of it this way you are at such a good spot. No cancer and they are monitoring you so closely. You blink they'll know it. You are blessed.
I don't want the barbie boobs either, just enough to fill a b cup... elsewise, I will have to buy all new bras. Have been wearing the cami's and the wife-beater T's for what seems like forever now.
Did you do your exercises today?
Tammie
PS. my hair is finally falling out. I look like a freak! It is falling out in a male pattern baldness thing, the front and sides first, and the crown will be last to go. My husband promises me a shave as soon as he has lots of time.
Did you pick out a wig or hats to get you through this time? That is kind of wild the pattern that the hair falls out. Let me know how your hair is when it grows out. Everyone that I talk to love the texture, usually curly, thicker, etc. when it grows back.
Well must go take care of my 4 year old. Needs mom for something.
take care
I, too, had a mastectomy and chemotherapy for breast cancer, so perhaps I can share my experience with you. My tumor was 1.2 cm, medullary carcinoma, ER-, PR-, Her2-, sentinel node clear.
My surgery was in November 2003, almost four years ago now (yay!). The drains were indeed the worst thing to deal with after the surgery, but mine were removed two weeks after surgery, so it was over quickly. I am a teacher and I went back to work four weeks after my surgery. I worked for two weeks and then had 2 weeks off for Christmas break, so it was easier for me than it might be for others. I chose not to have reconstruction and have worn a right-side prosthesis for almost four years now. It is not bad, and I have grown accustomed to it.
I had four cycles of AC chemotherapy. I really did not have any bad side effects. The day of the chemo was not bad...no nausea, no tiredness. The worst part was sitting in that chair for 3 hours with the IV in place, but I used the time to read. The day following the chemo was usually the worst day for me...still no nausea, but a weak, weird feeling. By the second day following chemo, I was pretty much back to normal. I scheduled the treatments for Thursday after school, would take Friday off, and then be back at work on Monday.
My hair started falling out two weeks into chemo. I had my husband cut it all off and started wearing a wig when out in public and at school. The rest of the time, I just went "au naturel". Five months after my last chemo treatment, my hair was long enough to go without the wig. It was still very short and very curly. I had straight hair before this ordeal. I decided to go for the bold look and had my short, curly hair bleached platinum blonde and my ears double-pierced to complete the radical look. Everyone loved it! The curls only lasted for about a year. I am now back to my straight look.
I am continuing to do well and think of every day as a gift. Please know that you are both in my prayers and I wish you well on your journey.
I just returned from Utah and went grocery shopping. I saw pink M&M's
and thought of you all.
I continue to send you prayers for courage and healing, and "happy vibes"
JoyGirl thanks for your prayers. All is well here. Doctor said that he doesn't think I need chemo. Praise God!!! I am so thankful. He said they caught my cancer so early and only 4% of women with my type and as early stage as it is benefit from chemo. Going to do a oncotype test - if my insurance will pay for it. Praying that they do.
Also need a Her2 test - not sure what that is but the lab didn't do that, he ordered that test done also. He was very upbeat and positive.
I havent written much, so busy here. Plus, if you have seen the news, San Diego County is on fire real bad!!! Im not directly in it but I do watch the continuing news coverages on tv, and when I go outside, I wear one of those paper masks because of the fine particles floating down. This morning when i went outside, their was ash snow all around.
Thursday I go to Dr Onc, Tuesday I go see my surgeon again for her to see how Im healing. The bruises look alot better but I have got to say, these 3 weeks off from work have been great!! Im thinking about getting her to release me for the following Monday, instead of going back on Halloween.
All of you sound as if things are going somewhat smoother for you and thats wonderful. This is a great support group with a personal touch. I want to thank you for all your support and helps, its meant alot to me.
I'll be in touch from time-to-time
Carol
I also am healing very nicely, the doctors tell me I am ahead of schedule.
Also have any of you been to those hospital sponsored meetings about nutrition, exercise, etc.?
Just wondering if you found that helpful or does it just make it seem like your whole life is now centered around cancer.
I'll be praying for you about the fires and your upcoming doctor's this Thurs. keep positive.
Glad to know that you're healing beautifully. I think all of us in this particular blog are really fortunate and are going to beat this, and that is exciting!!!!
I get that stuff in the mail about classes being held, but they have it at a time where I couldnt really go anyway-especially when I work. Its always a work day at a weird time. I think though if I really saw something that really looked interesting I would go but then its like , "wow, we all have or have had cancer." Then I would more than likely hear stories of women who had it really bad. That would make me feel so bad for their bout, Id feel guilty because all I have or had was DCIS, then I would go home and think about their stories and worry about my future. Thats why I have to limit my "cancer research" on the internet too. This is a positive place. You read some things on breast cancer.orgs website-oh boy. Some research is good but I get carried away. Ive been told by a friend to just research what test or what you have then STOP. That 1st visit to Dr Onc, I told him I researched alot to excess, and he said, "maybe you shouldnt do that." Im going to start training myself NOT to do that.
Glad everything is going well with you. I hope and pray your pain will go away and that youll be able to sleep better. That is kind of a negative, but thats alot easier to deal with considering and maybe since you are getting your peace of mind back (isnt that a GREAT feeling???) maybe the other things will follow suit very soon.
Be Well All and Take Care,
Carol
t-belle - I was fortunate the doctor injected the dye when I was under then waited until it went to the nodes. Not sure why some do it the night before.
I glad you posted because we can pray for you and we will. If you have any questions just blog. We'll be there for you. If we fill up this site just go back the forum and see where we might have posted on another site. That was devasting to me not to be able to talk to everyone - I was right in the middle of my treatment and needed the support. You will have good days and you will have bad days. We are here to share them all. Just post so we know how to pray. Thanks.
you sound much the same as my story.... I have invasive lobular and invasive ductal both, and had a double mastectomy on 9/14. Have not regretted the decision one bit. My cancer was only in the left breast, the right was taken prophylactically at my request. I am 46 years old, and will get brand new perky breasts for my birthday next year on 9/24. Currently, I am in the middle of chemo. 4 rounds of Adriamycin/cytoxan and 4 rounds of taxol, done every other week. It is rough, but doable, the weeks off give you some relaxation. I'm lucky, I have not had to work during any of the time. I am a psychiatric nurse, my husband an orthopod, we have two children, ages 5 and 9. Ask me any questions and you have probably read my other posts.
Good luck on Thursday.
Tammie
I had the sentinal node mapping done today, I was pleasantly surprised that it didn't hurt all that much. I think there's another part to it that they will do tomorrow during the surgery.
My mom and sister came out to be with me for the surgery and aftercare, what a blessing they are. My husband and kids ages 21, 17, and 11 are great too, but everyone is so scared. We all had a good cry together tonight, and then prayed, which helped to restore the peace.
Maa64, thank you for your prayers, I will pray for you too. I couldn't make it without the Lord.
Tammie, the cancer is in my right breast, and have chosen to have the double due to the type of cancer. I have watched your story unfold, and I have appreciated all you have shared. I won't know until after the report comes back what kind of treatment I will need, but I will definately have more questions with time. :)
Well, it's late and I better get some rest. My surgery is at 11:45 am tomorrow. I am going to have the expanders as well, so I'm really hoping all goes well.
t-belle - glad all is going well. Let me know how your reconstruction is going. I am going today to get more saline put into the expander. I saw a picture where they overinflate then deflate to give a more natural looking breast. I am not sure how many times I have to go in to inflate. The reconstruction was the last thing on my mind when all this came down the pike. Also if you check this - don't be surprised if you wake up from surgery and you feel like an elephant sat on you chest. I had a good chest cavity so they inflated the expander a little. I think I was a little surprised when I woke up and felt the pressure. I'll be praying for you.
Tammie - will you be on tamoxifen? or no because both breasts were removed?
Can't find anyone who has been on that and don't know what to expect.
I am glad that you are feeling good without the sugar. That is good because sugar makes you more acidic and acid makes you more prone to cancer. Good for you for making those dietary changes.
Sounds like you like a wholistic approach. I recently read an article about tamoxiphen and it said that it increases your chances of uterine cancer. I can't remember the journal that it was published in, I know it was some international journal, but there is a short article on it on www.mercola.com
if you were interested in reading a little more about it.
I will keep praying for a speedier recovery.
Be Well.
Just read your post.
Glad your mammo went well.
Did you schedule the ultrasound?
Let us know when that is.
I'll pray for you.
Happy that you and your mom seem so close. What a blessing.
I'm glad you have each other.
I will be praying for you.
Today is my lab's 7th birthday. Are you able to get out and walk at all with yours?
I think that you know your job better than anyone and if you feel like it is stressful and negative there, then it is good to take more time. The doctor will approve it and your position should be protected by short term disability laws. The important thing is that you take care of yourself the best that you can, whatever it takes. So please, take good care of yourself and do what you have to do to keep yourself in as happy and positive a state of mind as possible. Remember to watch the happy, fuzzy, funny type movies. Surround yourself with positive stuff!!!!
Be healthy, I will keep praying for you.
How are you feeling? How are you feeling about your hair? What color wig did you get - your natural color or something different?
How are your kids handling everything? I'll bet they are getting excited about Halloween. My kids are older 11, 13, 15 so they are more interested in power trick-or-treating than they are about a costume. My 11 year old is going to be a chef and the other kids have no clue yet. This will be the first year that I won't go trick-or-treating with them. The older two went with friends last year and I went with the younger one and friends. This year I will turn him loose. It is sort of sad to see them grow up - It' a good thing but just a little selfish. It also makes me very grateful just to be around for them. I'll pray for you and your family. I will continue to check in.
Maa We still have fires here but alot of people have started to go back home or look at the remains of their home. The sky is still smoky although its not as gray and dark as it was. Im still pretty careful.
I went to Dr Onc yesterday, and the dreaded RX called Tamoxifen came up. This guy was filling in for the other one. By the way, my BP was better than normal for me in the dr office (134/80) . Last time I was there with all the stress it was 200/ ?. I havent worked for awhile, the surgery is over and Im relaxing. But I dont want to take that drug or one of those other ones either.
The dr said that because I had the high grade (3) that I should take it. I thought you took that stuff because of the hormone thing. This dr really couldnt look at me and I felt like I was a number not a patient. I go back 12/27 to discuss this further. I know some people who didnt have any of those drugs and also had grade 3 stage 0. The side effects are out weighing the benefits as far as Im concerned. Strokes (my father had one-didnt die from that however probably didnt help him either-he was in a rest home when he died). blood clots, endometrial cancer, eye problems and the side effects go up if youre over 50, I am 51.
If I didnt take it and got cancer, Id do some 2nd guessing. But if I took it and got one of those side effects, I know for sure what caused it.
If any of you take or dont take it please post your thoughts. I am going to a great Dr early Dec., and I may see my own GP. The other dr is like a GP and is an O.D.(osteopathic dr). She does thorough blood tests and prescribed a great line of vitamins I still take. She certainly believes and prescribes regular meds too and when I see her, she will take a good half hour with me at least and will talk. I think she is in her 70's and is sharp as a tack.
I do have time to pray though and trust me you gals get prayed up. Take heart.
Joygirl - thanks for the website - quite interesting. I do feel different without sugar. I really eliminated most sugar. Will eliminate more when I get to the grocery store.
maa - It's interesting how kids react to the stress. But, you still need to let yourself heal. Can you check out movies from your public library? Do you have any friends with movies you could borrow? My husband has the old MASH and Seinfeld series and watches 1 or 2 episodes to get his mind off problems, get some good laughs (even though he's seen them all before at least twice) and relax.
I'm still praying for all you gals, your recovery and your treatments.
I don't regret participating in that trial as I have BRCA2 mutation (unknown at that time), with KILLER family history and 3 daughters. I have lost an aunt at 45, my grandmother at 71, a second aunt at 61, my cousin at 39 and saw my mother survive breast cancer for 25 years with NO chemo or radiation thanks to early detection and TAMOXIFEN. It staved off my breast cancer until I was 50. My younger sister who did not participate was diagnosed with stage 3 at 47.
The hot flashes, some mood swings, all kinda like the menopause we're all gonna get anyway...sure beat the alternative.
You have to fight this horrible disease with anything and everything available. How could you even think of bypassing something that might give you more time even if you have to "live with some side effects"? Have you ever seen firsthand how this disease decimates a woman?!!
Sorry to be so upfront about it...I really apologize for being so adament, but this is LIFE we're talking about...not a tight pair of shoes.
I know this is gonna P--- a whole bunch of you off, but, DON"T YOU WANT TO LIVE!
Quit whining about something that could possibly give you a whole lot of more time before you die...hopefully of natural causes.
This is kind of funny but when I went for my lumpectomy on the 5th, I felt like I was putting on my Halloween costume when I changed into the surgical garb.
I think it may be hard for your 4 year old to really understand whats happening. Maybe hes worried too. I know that sometimes I would get mad to mask my worry. I really dont know why but I can remember doing it. Could you tolerate a short walk somewhere pretty and where you know there might be benches to people watch or look at pretty scenery? Maybe theirs a pretty place not too far from where you are that might be tolerable to drive to. A park where maybe he could let off some his frustration by playing? Just a thought. How much does he know of whats going on with you? Maybe have a good talk with each other then you could order a pizza and they deliver? Some kids like that and you both might feel a little more relief.
Im trying (stress trying) to cut down on sugar too, and the holidays are coming. I have to plan for this during the day but sometimes at night I love hot chocolate and will make myself a cup. I dont use alot of sugar either. Im one person that loves these 100% chocolate bars. I tend to eat less chocolate and am more satisfied. They cost alot but are worth it to me.
When the air clears here, I am going to join the Y and get with a personal trainer. I really want to get in shape.
I have a website about tamoxifen for you, its www.all-natural.com/tamox.html this is a long article but worth reading, and it leans me against it.
I have another website for you. Its a relaxing thing. www.mayoclinic.com/health/meditation/MM00623 I kind of like it . Its a guided meditation-try it.
We are here to support each other, not bash each other, or P--- as you say. We are educated women and we continue to educate ourselves.
Labhusky you were a lot kinder in your reply. I admire you.
Maa, lets keep each other informed on what we learn about this. We are in the same boat. I will let you know and point you to different things. On breastcancer.org website they have a hormonal board that I check periodically. Ive put up a few questions there and other places. I dont mind researching, and I think we both have plenty of time till that decision comes-so now is the time to do it without the added pressure. Lets both take a deep breathe, relax and be glad we have this time to research. Hope things are going easier for you. They will get better. My steri-strips are still on and Im almost tempted to take them off. I saw the dr 10/11 and she said theyd come off in 2 weeks. I think they used the toughest brand of those things on me!!!
When my drains were bothering me I was bawling woke my husband up and told him to cut the sutures. He wouldn't, he went to work and told the guys "She wanted me to cut her sutures last night!" He thought I was nuts. They just kept pulling and I was in so much pain. It was like all my nerve endings were attached to that one suture. Boy was I mad he wouldn't cut that one stitch. The plastic surgeon laughed when my husband told him and told Good going, stay tough don't cut anything! I hate when they team up on me.
Thanks for all the advice. My cancer was both Estrogen and progesterine positive. I will give tamoxifen a try if it makes sense. Please keep me informed. I do look up the websites you all give me. We are so blessed to have so much information available. I like weighing the pros and cons. As I was told each cancer is unique and so everyone's treatment is going to be unique.
Ziggy - don't let anyone ever make you feel bad about your decisions. Go forward and don't look back. I pray for good health for you and long life. There is enough fear with cancer and we surely don't need to add fear to our lives. I just get frustrated because a lot of doctors want to give you a magic pill. I am planning to attack my cancer first with the surgery(done); second diet; third exercise and then whatever I think adds to a good attack. Take care Ziggy - God bless.
Also Labhusky - is the chocolate you are talking about dark chocolate and does it contain any sugar? I too crave chocolate.
Also did anyone have a oncotype DX test done? they are doing one on my tissue. Just wondering. I will get results in 12 days. Please pray that all comes out well. Thanks I do appreciate it.
Also montana just wanted to tell you watch your child's sugar saw a show on Halloween and sugar and doctors see more children the week after halloween than any other time because of how much candy kids consume and it weakens their immune system so much that kids get more illnesses than any other time. Think it was Dr. Oz on Oprah show. I found that extremely interesting. That is why I am trying to give up sugar. Want to boost my immune system.
Can I reiterate what a joy and delight you all are. Thank you for the support.
I read your posts and can cry, laugh and feel normal and not alone in this journey. Thanks.
I have 3 daughters, 18, 20 and 33. The last has been tested for BRCA mutation and thank the Lord, does not have it.
One day, when I read about the trial available in 1992 at the City of Hope near my home, I told my husband that I HAD TO GET IN THIS TRIAL.
I felt for sure, that someday I was going to be a victim of this awful disease like the rest of my family and maybe I could be part of finding a cure or a preventative measure or ANYTHING in fighting this disease.
Would you like the details on the horrific suffering etc. that those women endured from this disease?
I quote you here, "I have a daughter who I worry about, etc. You were way out of line to tell anyone of us to stop whining. When you walk a mile in someone's shoes then speak. I am sorry for your losses. Ovarian cancer is not detected very easily. I will as I have on this complete horrific journey take all the information talk it over with my husband and then make an educated decision. I am fighting for my life - do you think I would have a breast cut off if I didn't want to live? Wow, your rantings make no sense. I have a 4 year old of course I am going to do everything to see him go to college, married etc. I am not however going to swallow a pill because someone tells me to."
Lady, I walked more than that mile in your shoes.
NOW, you read this. I did this for them and FOR YOU and for every woman out there. I had those side effects of hot flashes, LOST LIBIDO and you know what, my husband stood by me the whole way! He stood beside me when they said I needed a mastectomy and I said, OK, take them both off! I know cancer will most likely come back and kill me like it did all my family members. I told my husband that the risks involved with Tamoxifen (IF I HAD THE REAL DRUG and NOT the PLACEBO, and guess what, I had the real drug) were many...as you all fear.
"In case you didn't know", I was diagnosed with LCIS, chose bilateral mastectomies and TWO expanders for future implants.
OK, I believed all in my world would be good. NOT!
Unluckily, my "world class surgeon and world class hospital" sent me home with an MRSA infection and I lost those implants and almost lost my life.
As soon as I was well enough, 8 months later, I had the total hysterectomy.
I just celebrated my 4th year after the bilateral mastecomies with "no further evidence of disease" and am coming up on my 3rd year exam after the hysterectomy.
Take some time and read what happens to BRCA2 cancer survivors and Ovarian cancer. Make friends with the ladies who run the stores where you get your prosthesis and ask them how long the women who have had lumpectomies vs. mastectomies vs. chemo vs. Tamoxifen vx. Reloxifene vs. "fad diets", survive and come back for replacement prosthesis.
Bottom line, you need to know more about cancer, not just breast cancer.
Ask any person who has survived chemo and radiation, if they were offered a drug or treatment that could possibly give them a whole hell of a lot more time on this Earth, but they're gonna have some side effects, do you think they could handle some "lost libido" some weight gain, some hot flashes, some mood swings, some more hair loss? AFTER what they've already gone through with chemo or radiation?
You can say you are "supporting each other" all you want, you can say my "rantings" make no sense, and that I have a"self righteous attitude". I apologize for saying you whine, I really don't mean to chastise you...this is cancer.
It is not a pesky rash you can rub some cream on. It is not a grey hair you can color over. Like I said before, it's not a tight/ill fitting pair of shoes you can take off...it's CANCER.
I do admire how much your support for each other makes your posts so heartwarming...don't stop that ever. We all need to support each other for whatever ails us.
I pray you do not ever suffer a re-occurrence or metastasis because you were not prudent enough to fight it with everything available to you.
Support each other, certainly pray for each other, but don't stop fighting this disease because you're afraid of SIDE EFFECTS from treatment whether it's Tamoxifen or cutting out sugar from your diet etc.
The doctors know more than you or I do...at this time, that's all we have to go on. Other than that, you can just leave it in the Lords' hands...he gave ME, the knowledge that I have to do for myself, so I seek what it takes to live.
Dear grandmee: Clinical trials have demonstrated that there is a significant difference in the rate of recurrence reduction between women who used tamoxifen and those who did not (in women with estrogen receptor positive tumors). You may benefit from a discussion with an oncologist who can discuss your risk specifically and the pros and cons of the medication as it relates to your situation.
Does she work for the pharmaceutical company?
Why don't one of you post a question to her/him on the drug trial from 1992? Might prove I'm not really the b---- you think I am.
God bless you all, he gave for all of you. He wants you to choose LIFE.
carme has been posting on this site for a very long time and I am sure she meant no harm. Some of us are more passionate than others and its OK. Some people chose to stick their head in the sand and not ask questions about their cancer or treatments which to me is rediculous.
ladhusky most women start tamoxifen before the radiation. Doing the 2 together does not effect you. I saw you were waiting and did not know if you knew that.
The only website I would read is the site of the company that makes the drug. All side effects will be different for each of us. Some have no side effects. I don't believe ovarian cancer is a side effect but uterine cancer is. But as I said it is rare. Some women like myself make the decision to have a hyterectomy and then we will have a few less organs that we want get cancer in. I have not yet had a hysterectomy but I am leaning that way. Maybe around this first of the year.
I wish you all well in your decision making.
I am not afraid of the side effects I just am making sure I am not trading one cancer for another. I am beginning to ask questions and gathering facts on the drug - that is the step I am at in this journey. I research everything. Always looking for the best solution.
I think you are assuming that we are not taking cancer seriously. I am two months into the diagnosis and that is all I think about - so you have no right to assume that we do not take the diagnosis seriously. All I have to do is take my shirt off and realize what cancer has taken from me. There hasn't been a day in two months going on three months that I haven't cried. I take this very seriously. You need to understand that you have every right to your decision and we have every right to our decisions. Let's agree to disagree. You made your decision without having anyone beating you over the head, let us make ours. I understand your passion, you made your point, we get it. Give us time to get up to speed - we understand your point of view. You made that abundantly clear. When you see someone smoking doesn't that irritate you. Don't you want to say to them hey you could get lung cancer. Well it does me but I have no right to go up and tell them that - do you think that for one minute that they are gonna stop just because I go up to them and tell them a terrible story about how my step grandmother died a humiliating death because of cigarettes. Am I passionate about it yes, but will they quit - no. People have to make their own decisions.
I will make my own decision so will labhusky, so will ziggy.
I think we got a little sidetracked and no one really posted how they were doing, outcomes etc. Please post. Labhusky just heard the fires are under control - the weather experts said to keep activity to a minimum. Guess the advice is not to work out - breathing in more soot.
Ziggy how are you?
Montana & joygirl - how are you? If any of you heard about the oncotype could you please post. You guys always seem informed. Researched their site and not all insurance co. pay The cost to my insurance co is $3600.00 but they'll cover it. Thank God.
Also struggling with depression, guess that is normal after what all I have been through. Constant pain though due to the implant, can't sleep at night. Wake up in pain. Did anyone get implants? I have pain under my arm - not sure if that is from the surgery or from the implant. I look back now and think I should have waited for the implant. Let my body heal from surgery then do the implant surgery. Thought this would have been better. Any thoughts? Thanks
Heres what I look for. The higher percent chocolate, the less sugar it contains. This is where you find out whether you like sugar or chocolate. I have 2 fun websites for you. The 1st is chocosphere.com which I use because I think their s&h is cheaper and they are based in Oregon. Their is also another website worldwidechocolat.com I like the brand Slitti because they hav a 100% bar but they are sold out of that right now on both websites. I also like the 90% slitti super novanta amazzonia bar. For beligian chocolate, Galler 85% extra bittersweet is delicious and thats a good place to start to work your way into the real taste of chocolate. Belgian chocolate is very creamy as it melts in your mouth, Italian chocolate is not. But a square or two of those bars at night which arent that big at all satisfies the craving and if you like coffee with it-MMM. Dont chew them, let them melt in the mouth. Yes, its pricey but you really cant down alot either and it lasts awhile.
I now have another website for you re: tamoxifen that I find quite interesting. This is the drug database for the professional talking about it and the same website also has one for the patient. The website is www.bccancer.bc.ca/HPI/DrugDatabase/DrugIndexPro/Tamoxifen.htm Notice not html.
After you are thru reading that for the professional side of it, if you look to the left tool bar there and look for "drug database-patient" click on that. Click on the letter "T" and hit the 1st Tamoxifen there. Very interesting since I like to get both sides.
Hope you are doing better and am also hoping and praying for WONDERFUL results from that test!!!! We are still alive, and still feeling and considering the alternative, I will take this.
Tomorrow I get to see the surgeon and "beg" her to release me next Thursday or even next Friday as I want to stress as less as possible when the radiation hits (bad wording I know). See, the longer it takes me to get back to the dr, the more time I have to think but I guess thats good. Im trying to transfer to a different department that I use to work for. If I was there, there wouldnt be all this stress and I could kick myself for leaving. I wasnt thinking straight but I figure too that I had something to learn by going and now Im ready to go back.
I finally went for a walk today. I did 2 miles and that felt good. Yesterday, woohoo I cleaned the fridge. Not fun but it sure is pretty!!
maa - Sorry to hear how things are wearing on you. After all you've been through it's natural to be depressed. Hopefully, the pain will resolve soon.
boninclyde - I wrote down the date for your reconstruction. Keep in touch.
maa/ How are you doing? Went to the surgeon today and I have tll Nov 13th off. YES!!!!!!! I had some questions written down with me to and she saw my piece of paper and and she said "talk to me." First, I brought up the tamoxifen and since she doesnt figure the odds she cant really direct me but feels its important that I know all that. She asked me about the visit to the Oncologist last week. I told her that I saw another that he was filling in. She said Dr Smith? I said yes (like she really knows her stuff and whats going on). She asked me how he told me if I got numbers or just came out with it. I just said that he came out with it. It happens that MY oncologist is going to see her this afternoon. I mentioned to her that I have strokes in my family and she is definitely going to talk to him about me. She said that she has 2 patients who dont take it for that reason. She also said that while it is my decision, that I should know EVERYTHING about it including or especially the odds (its like she is a team player and advocate). She said that if I dont hear anything from my oncologist before I go to work to call her office. She really wants him to explain things to me-which the other guy really didnt. She said that what she took out of me was really tiny and that it was a wake up call which I agree with her. I mean, not having a mammogram for probably 15 years then finding this? Yep and I am blessed.
I asked if my hormone was positive or negative and she looked on the report, didnt see it and told her assistant to notify the lab cause its not on my report-so thats not coming up.
I asked about returning to work later and she went for it. I originally said Nov 9th, but since that was a Friday, she suggested the 12th but I said thats a holiday, and she said, ok the 13th. I thought-COOL!!!! You see, my boss called me yesterday because I wasnt there and my previous dr note said I would be. The only thing about that was, I had to see the Dr the day before to make sure (I verified that with my dr today and she said yes). Then, the Drs office called twice moving my appts. The first time it was for the 30th and then they called last week saying the 31st. My boss wanted the dr to change the wording to something like, "Changed from 10/30 to 11/13" cause as it stood, I wouldnt get paid for that day including disability (its such a hassle to work for local government). I really didnt think I had to call her because when I talked to the payroll clerk, she said that payroll keeps in contact with the Dr anyway so I thought, no big deal-then the boss calls-UGHHHHH. How was I suppose to know? I havent gone thru this before.
Today though after I got home, I couldnt wait to call her with the news (trick-or-treat). She asked are you doing ok? I said, yes that I have to see the radiation dr, and had a little bit of eczema too (it is going away but it was on my L breast there last week- the onc called it a mild case). She said, from that? I go yes. I dont really know but I didnt want to sound as happy as I felt if you know what I mean. She then wanted me to make sure the office faxes the new note over. I told her that they already have the fax number and will be doing so. That office is meticulous!!! Its a great reflection of the Dr. We said goodbye, I had some cheese-its, a banana, and went for iced coffee. Thats lunch. Crazy huh?
The steri-strips, she took them off. She looked suprised and said its already healed. I guess she means that its pretty well closed up cause you cant see anything but the skin growing on both sides. I mean, I wouldnt say its healed but Im not the surgeon and they probably have a different meaning.
Are your kids going trick or treating tonight? Hope youve taken it easy today. I havent done hardly much of anything since cleaning that fridge out. I never hand candy out Halloween. I feel its too dangerous. When I was very little I remember some older big boy probably early to mid teens forcing his way into the house and my grandman took a broom, yelled for him to get out and kept hitting him with the broom till he did. That kind of stays with me. Plus our block doesnt give candy out either. I use to be the only one, but I think they learned. We can have some meannies around here. Not that Im in the worst neighborhood but their are gang bangers, paroles, and druggies around here.
Just had to drop the good news to you, I really hope youre doing better. Every day, we are getting better. Do something fun, force yourself!!!!
I know my situation is different, I had mastectomy, lymph node and reconstruction, but is anyone else this tired? Just wondering. I think I am getting depressed because I was always so active, full 100 miles ahead. People used to say Don't you ever stop? I think yep, now I hit a big stop sign. Boninclyde if you could blog I would appreciate it, and labhusky you seem to be bouncing back. Any advice?
maa - I agree with labhusky that your body has been through a lot, but checking with your doctor would be a good idea just to make sure everything is ok. I wouldn't deal well with the tiredness, either.
I start chemo 10/13. Thanks, Tammie. Sounds like the same regimen my Onc is doing. I can deal with the hair loss, just don't like the thought of throwing up. BJSaws, if you have any info on Triple neg, I would appreciate. Not only is that rare, there really isn't much info about intramammary node positives either ( my Rad. Onc. & surgeon both say that is really rare as well).
This is my first time posting to anything like this but I will be back often. You all sound so positive and strong. I will be praying for all of you. After all, He is the great Physician and who better to go to for advice? Nancy
Let me give an example about me. I have DCIS and am getting treated for that. But do you know that I am already "looking in the future" shall we say worrying about the what if I get it again in a worse scenario syndrome? I was diagnosed early September, Lumpectomy in Oct, and will be going to get zapped by rads sometime this month. Sometimes, I just cant take one thing at a time and my mind thinks too much. Great for planning ahead to a point though and their is a point I need to cut that off of.
Glad you found us!!!
Anyway, I am glad to hear that they are moving right along with your treatment. I think we will always have that in our heads wondering if it will come back or worse. I know I have started wondering if I have ovarian too!!!! And although I bounce back pretty good from things, I have always been a procrastinator. It was 5 yrs since my last mammo. There's a lesson to be learned!
I will keep you in prayer.
I'm glad I found you too.
I am sorry but I do not know anything about the oncotype. Sounds like you got some good responses and I hope you find the information you need.
All: I started a yoga class and the instructor is a little Japanese man and instead of "hold your breathe", he says, "hold your breast." It reminds me of the 'funny' stories we have shared about our "girls" and the wonderful openness amond the friends in this forum. Anyway, the goal of the yoga class is to get everything out of your mind and just get in touch with your body and your energy. Sometimes I think of you and the others and start praying for you. Then, never fail when I get back into the meditation and quietness in my body, he says, "hold your breast" again, and I find myself with a warm fuzzy smile that I just can't erase. I don't mean that in a weird way. I just feel such a bond with you and the others going back to the "suspicious abnormality" group. I know I haven't gotten on line very often but I do think of you all often and continue to check in and pray for you all.
Hope you were able to enjoy Halloween with the kids.
Labhusky: Glad you have another week or so off. It will give you the time you need to get ready for all the craziness. It is great that you are walking!
Have Tam or Misty been around? Haven't seen any posts from them lately. I will need to take the time to go back and read through some of the posts to see what I have missed.
Hi MontanaGirl. Glad you are doing well and continue to share your knowledge and support with everyone.
www.emofree.com
Let me know if you have any questions about it.
One thing I enjoyed after the workout of yoga, the teach would have you lay down. She would put an eyepillow on you. The eye pillows smelled good. Some nice music was playing in the background and sometimes she would say things too. Kind of like a guided meditation. She would always dim the lights and there were candles burning. After that, I felt so relaxed and like a million dollars when I got home. It was euphoric!!! Now you make me want to go back to that.
All these things that I want to do youd be suprised. I was such a home girl but I feel like I want out of that now. Dont laugh all, I want to get married. Never married in my life!!! Not that I didnt want to, it was just that me, my mom and my brother were all together. All I can remember is just going to work and come home cook dinner cause my mom was and is not a cook, and do other stuff and things just became routine. Kind of like life passes you by before you know it. Now, its just me in the house. My mom lives in "Sr housing". She said, Well you kids arent going to leave so I will. Then this year my silly brother has a flakey girlfriend, believe me I know. Now its me and Juneau (my labhusky), he is going to be 15 in December as far as I know since he was a stray. I figure he was 1 yr old when I got him because he wasnt a puppy but seemed young.
My hair is mostly gone, just stubble. I picked out 3 different wigs, one long, one chin-length bob and one very short spiky. Then, my niece gave me a Cruella D'ville wig for Halloween. The wigs are all the same color, medium brown, which is my normal hair color.
The kids are doing well, they seem to just roll with the punches, don't ask too many questions. They say.... it doesn't matter if you wear your wig or not mom, we don't care. Me.... I don't like to be bald at all. I think it is pretty unattractive. We went to out to lunch and to see the Bee Movie today. It was very good, so funny, really lifted my spirits. My husband is on call today, he is already gone, probably won't be back until tomorrow morning. Looks like a hard day of traumas. He is still being my rock, though he has his moments.... one time I found him crying and he has taken to staying up late watching movies by himself, esp. action adventures. I don't really know what that means.
My mom comes in the evenings on the chemo week, helps me with the kid's homework, then stays until they go to bed, we watch "Biggest Loser" and "Survivor" after the kids go to bed. My mom in law is coming for a short visit in a couple of days, we will have major retail therapy together.
Let's see.... what else. I am now wearing size 6 pants, though not sure the cancer diet is the way to go. Have no pubic hair... no nose hair, but my eyebrows and lashes are holding strong. Thank God for that.
Have been trying to run when I can, walk when not running, determined to keep what muscle I have, not end up looking like a flab bag, skinny thing.
All in all, not that bad, it could be worse. I can definitely do this. I have not decided about the Tamoxifen yet, I figure one step at a time. I appreciated the comments of Carne (sp), but we all have profited from those who come before us, and all need to make our own decisions.
Sometimes, when the kids are in school and I am wandering aimlessly through the house, I wonder how I came to this place. I feel stir crazy and antsy at times. Am used to being very busy, helping at school, working etc. But then I feel lucky that I'm not a single mom, no health insurance, etc... etc. I try to count my blessings. That's all for now. You all take care. Love from the potato state, where it is finally getting to be winter.
Tammie
ibelieveinfairies - I love your new name, but will always still think of you as boninclyde, because that's how I got to know you.
JoyGirl - It's good to have you back with your positive outlook and support.
*Tamoxifen will not be offered as an option because it only works on estrogen positive breast cancers.
*As I understand it, you do not have to worry about having your ovaries removed or enduring drug-induced menopause, as estrogen (produced by ovaries) does not affect your type of breast cancer.
*Triple negative breast cancer is automatically classified as intermediate risk for recurrence since there are no preventative drugs available for us (i.e., Tamoxifen).
*In one study, a low-fat diet was shown to prevent recurrence more often among triple negatives than in estrogen-driven breast cancers.
*Chemotherapy seems to be more effective with triple negs.
That's about all I know. My thoughts and prayers are with you.
I completed my chemo on April 15 (tax day) and by late September I was able to go without a wig. My hair was very short and very curly, but it looked good enough that people might think I had chosen the hair style. My pubic hair, eyelashes and eyebrows all came back about the same as they had been. My hair came back a little thinner than it had been, but not enough to cause concern. The curliness lasted about a year and then I was back to the same straight hair I had always had.
I hated wearing a wig and would take it off as soon as I got home from work. It always felt like I had a cat laying on my head.
My thoughts and prayers are with you.
Take care and I will continue to pray for you. You are doing so great!
BJSAWS - please go to breastcancer.org. Then community support. Join the discussion board there. Scroll down until you see the forum "triple negative girls". There are so many their that can help guide your way and share your journey.
Maa hope your feeling better. I hope all is well with everyone.
First, make sure you're at this website. (It's probably best if you are in the medhelp Breast Cancer Forum where all the threads are listed rather than in one specific thread. That way if this thread closes, you'll be able to see the other threads available and find names you recognize.) At the top of your screen, above the toolbar, you'll see the word, "Favorites." Click on it, then click on "Add to favorites." Then click ok.
That is all you need to do to put something in Favorites. When you want to come to this site, just click on Favorites, then click on the name of this site, and Voila, you'll be back.
I'm no computer whiz, but my hubby is, and fortunately he is very patient in teaching me these things.
I don't know about your software but up at the top of my computer there is something that says favorites. When you come to a site you want to keep just click there and it will ask do you want to save as a favorite and click yes. What software do you work off of? If we loose each other just remember medhelp.org. Hoping your on a healing path.
Lisa
I brought a little tube of "jeans cream" that I am planning on using and he said thats fine. Her website is jeanscream.com Its got aloe vera and vit E. I told him I wanted to join the Y on Friday and he said thats fine but to not go more than 3 days a week because of the possible fatigue. We talked about walking and Ive been doing it since the 1st and he said that will actually help with the fatigue. Nothing too strenous (sp.). He said dont take Vitamins A, C and E but that a mulit vitamin is fine. Once we get started, he will see me every Tuesday to examine my skin and see about the side effects
I then went in a room where a master mind tech measured, took pictures, and tattooed me. I have 4 small blue dots but havent looked yet exactly. That took an all of 20 minutes. In case some of you dont know, you hold on to what I call handle bars behind you while you are laying on your back and have to keep VERY still. My left arm was hurting bad. Have a hurt muscle there. He finally "unglued" me then the tech massaged my shoulders for a little bit. That felt good.
Tomorrow, I am going to Julian in the morning, and in the afternoon at 2:00 I have to go for a cat-scan so the onc. can see where my heart and organs are in relation to my left breast. Next Friday the 16th, I go back to the tech for the long pre-lim set up that lasts an hour and the hands will go on the handle bars again.
After that, on the 19th I have a "dry run" to see how everything is and if they need to tweak anything. Then, on the 26th, I get my first ZAP. Im scheduled for 33 and looking at my schedule here cause they are nice enough to give you one, it looks like 1/11/08 is my last one. The last 5 Zaps are boosts which means they will concentrate on the incision part only. Since they are open only from 7-3:30 (because they dont have too many patients right now), I have all mine scheduled for 7:30 (UGH).
I am sure glad I had this time off to get set up. It would have been a hassle for me to be at work and then be out half the day for the appt I had today, and the cat scan I have tomorrow. Looking at this schedule it seems to confirm it for me. True, I dont like to go to work anyway BUT there is alot involved here.
I hope everybody is well because it looks like everyone skipped a day.
How are you holding up maa?
Labhusky - couldn't imagine lifting my arm over my head. Due to the fact that I have an implant he didn't want me doing any exercises and I couldn't now even if I wanted to. So good for you. How many weeks out are you from surgery. I thought about walking also I think that would be good for me and I told my husband when this mess is over I am going to join a gym too. Shame we are not in the same neighborhood we could go together and motivate each other. Also does anyone know when the numbness in the breast wears off? Gradually I am getting feeling but was wondering is it a year for the whole thing or months or what.
Go to plastic surgeon tonight. Not sure what he is doing tonight - hopefully not more saline. But after a few days you get used to the stretch.
Take care all.
maa I am 5 weeks post op today. I think with a masectomy its 6-8 weeks recovery time before going back to work. I am just being a wimp with my lumpectomy. Somebody at work said dont come back till you are ready because you know how they are. Good advice!!! I had like 138 or so hours of sick leave and close to that vacation since I hardly ever took one. Maybe that was one of my problems too. Im going to hate to look at my totals when I get back but if I need time off, I will take it anyway. Especially if I start feeling tired from the radiation treatments which can happen mid span. I will just have the Dr write a note to keep me out for 2-3 days as needed. Where I use to work they were more understanding when my friend went through it. She'd call and say that she just couldnt make it in because she felt so tired and needed to rest, and they worked with her. I dont feel I have that where I am.
I drove to Julian finally yesterday. I could see where the fires were and in some places before getting their, I could smell the soot and singey after effects. Not nearly as bad of course as when they were blazing. I took you all with me in my heart. Where I had breakfast, in the restroom they had a lpretty teacup painted with flowers and under it was scripture. I memorized it yesterday: Trust in the Lord and do good . It was a Psalms verse I believe. I bought a pair of earrings and something called a cell phone lanyard that has pretty beads on it. Took me about an hour to figure out how to put it on the phone last night but I found a website-FINALLY!!! That had directions. Bought some honey from up there, elderberry jelly, and apple butter. ALl are homemade from up there. Stopped off at an egg ranch and bought a dozen of fresh eggs then came home.
It takes about an hour and 20 minutes each way to there. Got there at 9:20, and got back at 12:40 because I had my cat scan to go to. Didnt walk yesterday, was pooped!!
The scan itself wasnt all that bad but I had to put my hands on the handle bars again. The tech noticed I reacted a little to the tattoos. They were just a little red and raised a little around the dye. He said to use neosporin for a couple of days and that should take care of it. Already looks like the redness is gone but one more day cant hurt.
When you feel you are ready to walk, go for it cause your body is telling you something. Im going to inspect the Y today after seeing a friend at my own work. That would be so nice to buddy up and go to the gym, I agree.
Better get ready. Im actually going to put on makeup. That will take FOREVER.
For maa and the numbness, my surgeon told me it will never go away and my husband agrees. In a mastectomy, the nerves to the skin of the breast are severed and they don't usually rejuvenate. It's an odd feeling to get used to, but probably far better than it being painful. Plus, with the node dissection, the underside of my left arm is numb down about midway, then feeling picks up again. She (surgeon) said this feeling might come back, but everyone is different. I have no sign of any lymphedema, which is great, but I have been religious about doing my wall-climbing up above the head exercises. I do have full range of motion in both arms.
As far as activity, I was very active before surgery, and have tried to stay that way. If I can't run on a day, I try to walk at least 5 miles, and if that is not possible, I try to spend 45 minutes on the elliptical at the Y. I am determined not to lose muscle as I lose weight. I can't stand flat butt syndrome, though it would go along with my flat chest syndrome. Before surgery, I used to just shower in the group showers at the Y. Have not been brave enough to do that after the surgery, but I wish I was. Just think, there might be someone else who is getting ready to have a mastectomy and they could ask me what it was like etc.... Have never seen anyone post-mastectomy in the group shower. We are all a bunch of wimps.... I guess. Give me some courage guys.
I am hoping to be back running half marathons next fall. That is what I love, running in the spring and fall, when the seasons change.... pushing myself. Cute little sports bras with my new B breasts pointed straight forward.... hah.
Lets see, what else. I can't really comment about the energy level. I comes and goes, but then I have the chemo too. I did not really have any time, maybe a 10 days between surgery and the chemo starting, so hard to really judge my recovery from the mastectomi. Once the drains were out, it seemed not so bad. The drains were the yucky part. I am lucky to have my husband, who totally took care of the drains, all the emptying and stripping and he even pulled 2 of them for me. So I'm not the best model for that. I'm lucky to have a doc for a husband period.... he is my sounding board for everything.
As far as the depression, I have considered an antidepressant, but I don't think I need one. I am a psychiatric nurse for 20 years, and I think at times I have a situational depression, but once I'm through with the treatment, I think I will be fine. I talk with my psychiatrist friends, who are only too happy to jump in with some lexapro when I need some, but I'm trying not to do that. I've never been a depressed type person, and I think my reactions and feelings are probably pretty normal. I do take ativan (benzodiazipine family) during the day, it helps me to eat. And I take 5 mg of ambien to sleep at night. On chemo weeks, I take a bit more ativan and compazine, just because I have this overwhelming nausea, and I know I need to eat. I also have a bad case of pre-chemo (anticipatory) nausea, so on the day before chemo and in the morning of chemo, I take a lot of anti-anxiety stuff, (including 10 mg of valium) just to be able to show up at the infusion room. But, that's just me and my strange brain. I've always been like that. Still can't eat jello or anything jiggly, just because when I was 10 years old, my mom gave me a big serving of jello when I was sick, I vomitted green jello for hours on end and still can't even look at the stuff.
Thats all for now. Hope this helps those to come.
Be well friends,
Tammie
For maa and the numbness, my surgeon told me it will never go away and my husband agrees. In a mastectomy, the nerves to the skin of the breast are severed and they don't usually rejuvenate. It's an odd feeling to get used to, but probably far better than it being painful. Plus, with the node dissection, the underside of my left arm is numb down about midway, then feeling picks up again. She (surgeon) said this feeling might come back, but everyone is different. I have no sign of any lymphedema, which is great, but I have been religious about doing my wall-climbing up above the head exercises. I do have full range of motion in both arms.
As far as activity, I was very active before surgery, and have tried to stay that way. If I can't run on a day, I try to walk at least 5 miles, and if that is not possible, I try to spend 45 minutes on the elliptical at the Y. I am determined not to lose muscle as I lose weight. I can't stand flat butt syndrome, though it would go along with my flat chest syndrome. Before surgery, I used to just shower in the group showers at the Y. Have not been brave enough to do that after the surgery, but I wish I was. Just think, there might be someone else who is getting ready to have a mastectomy and they could ask me what it was like etc.... Have never seen anyone post-mastectomy in the group shower. We are all a bunch of wimps.... I guess. Give me some courage guys.
I am hoping to be back running half marathons next fall. That is what I love, running in the spring and fall, when the seasons change.... pushing myself. Cute little sports bras with my new B breasts pointed straight forward.... hah.
Lets see, what else. I can't really comment about the energy level. I comes and goes, but then I have the chemo too. I did not really have any time, maybe a 10 days between surgery and the chemo starting, so hard to really judge my recovery from the mastectomi. Once the drains were out, it seemed not so bad. The drains were the yucky part. I am lucky to have my husband, who totally took care of the drains, all the emptying and stripping and he even pulled 2 of them for me. So I'm not the best model for that. I'm lucky to have a doc for a husband period.... he is my sounding board for everything.
As far as the depression, I have considered an antidepressant, but I don't think I need one. I am a psychiatric nurse for 20 years, and I think at times I have a situational depression, but once I'm through with the treatment, I think I will be fine. I talk with my psychiatrist friends, who are only too happy to jump in with some lexapro when I need some, but I'm trying not to do that. I've never been a depressed type person, and I think my reactions and feelings are probably pretty normal. I do take ativan (benzodiazipine family) during the day, it helps me to eat. And I take 5 mg of ambien to sleep at night. On chemo weeks, I take a bit more ativan and compazine, just because I have this overwhelming nausea, and I know I need to eat. I also have a bad case of pre-chemo (anticipatory) nausea, so on the day before chemo and in the morning of chemo, I take a lot of anti-anxiety stuff, (including 10 mg of valium) just to be able to show up at the infusion room. But, that's just me and my strange brain. I've always been like that. Still can't eat jello or anything jiggly, just because when I was 10 years old, my mom gave me a big serving of jello when I was sick, I vomitted green jello for hours on end and still can't even look at the stuff.
Thats all for now. Hope this helps those to come.
Be well friends,
Tammie
For maa and the numbness, my surgeon told me it will never go away and my husband agrees. In a mastectomy, the nerves to the skin of the breast are severed and they don't usually rejuvenate. It's an odd feeling to get used to, but probably far better than it being painful. Plus, with the node dissection, the underside of my left arm is numb down about midway, then feeling picks up again. She (surgeon) said this feeling might come back, but everyone is different. I have no sign of any lymphedema, which is great, but I have been religious about doing my wall-climbing up above the head exercises. I do have full range of motion in both arms.
As far as activity, I was very active before surgery, and have tried to stay that way. If I can't run on a day, I try to walk at least 5 miles, and if that is not possible, I try to spend 45 minutes on the elliptical at the Y. I am determined not to lose muscle as I lose weight. I can't stand flat butt syndrome, though it would go along with my flat chest syndrome. Before surgery, I used to just shower in the group showers at the Y. Have not been brave enough to do that after the surgery, but I wish I was. Just think, there might be someone else who is getting ready to have a mastectomy and they could ask me what it was like etc.... Have never seen anyone post-mastectomy in the group shower. We are all a bunch of wimps.... I guess. Give me some courage guys.
I am hoping to be back running half marathons next fall. That is what I love, running in the spring and fall, when the seasons change.... pushing myself. Cute little sports bras with my new B breasts pointed straight forward.... hah.
Lets see, what else. I can't really comment about the energy level. I comes and goes, but then I have the chemo too. I did not really have any time, maybe a 10 days between surgery and the chemo starting, so hard to really judge my recovery from the mastectomi. Once the drains were out, it seemed not so bad. The drains were the yucky part. I am lucky to have my husband, who totally took care of the drains, all the emptying and stripping and he even pulled 2 of them for me. So I'm not the best model for that. I'm lucky to have a doc for a husband period.... he is my sounding board for everything.
As far as the depression, I have considered an antidepressant, but I don't think I need one. I am a psychiatric nurse for 20 years, and I think at times I have a situational depression, but once I'm through with the treatment, I think I will be fine. I talk with my psychiatrist friends, who are only too happy to jump in with some lexapro when I need some, but I'm trying not to do that. I've never been a depressed type person, and I think my reactions and feelings are probably pretty normal. I do take ativan (benzodiazipine family) during the day, it helps me to eat. And I take 5 mg of ambien to sleep at night. On chemo weeks, I take a bit more ativan and compazine, just because I have this overwhelming nausea, and I know I need to eat. I also have a bad case of pre-chemo (anticipatory) nausea, so on the day before chemo and in the morning of chemo, I take a lot of anti-anxiety stuff, (including 10 mg of valium) just to be able to show up at the infusion room. But, that's just me and my strange brain. I've always been like that. Still can't eat jello or anything jiggly, just because when I was 10 years old, my mom gave me a big serving of jello when I was sick, I vomitted green jello for hours on end and still can't even look at the stuff.
Thats all for now. Hope this helps those to come.
Be well friends,
Tammie
Tam
You sure sound strong Tammie. I think stronger than before. Must be doing better, I certainly hope so. There you go again with shall we say, upping stuff; green jello this time. Before that it was blue gatorade, LOL!!! I like the way you are focusing on stuff you are looking forward o, and thinking ahead afterward . That has to help alot. I try to be that way too.
Well, let me post this and see if we have reached the end of the thread yet.
Also Tammie - I am on ambien also for sleep - do you worry about being dependent on the pill for sleep. I take 10 mg. It does zonk me but I didn't use it last night and I was up all night.
don't know if I am going to take one tonight or not. I should be tired but actually I feel more energized at night. It's weird but I know I need my sleep, but as soon as I am almost asleep something always jerks me awake and then the next day I have a headache from so many wake ups.
Anyone else have this problem?
Take care all
I have been to the radiologist onc this past week for the last pre measurements. They had the cat scan from when I was there before so they could measure where my heart was. This Monday I go for the "dress rehersal" then the following Monday after Thanksgiving, I start getting "fried". Im ready with my cream. I saw a friend today too that told me lavender oil is good for burns too but dont get the cheapest, try to buy at least middle of the road. I will apply some of that first right afterward then my aloe vera, vitamin e cream.
Hope everything is going smoothly. Id say we have alot to be thankful for this year!!!
God bless