I'm thinking mastectomies?

michele u · 02-22-2007, 08:57 PM

I've been asked alot lately why i did not have bilateral mastectomies. I was dx 2003 stage 3b an had 35 pos nodes. I had lumpectomy because my surgeon said the likley hood of cancer coming back in the breast or at a distant site, it would be the distant site. I agreed mainly because i had such a high recurrence rate i thought i would have been gone by now. Now, 3 1/2 years later i'm having 2nd thoughts. Has anyone gotten mast. years after dx for prevention? I'm kinda scared about the lymphedema issue mostly. I have some numness on my affected side, not real bad. Just want everyone's opinion

Lani · 02-22-2007, 09:18 PM

prostaglandins and cytokines released to achieve healing of the surgery might not stir up some dormant cancer cells.

Perhaps not, as studies of surgically removing the primary tumors in those who presented with metastatic disease doesn't seem to increase the rate of death from metastases, but those studies were not done particularly on her2 positive breast cancer.

Even if cancer comes back in the same breast, studies have shown success with repeat lumpectomies--I think the thinking is that the smaller the surgery the less inflammatory substances released.

The point I remember is that breast cancer recurs at chronological peaks which are timed in such a way that the "clock" started ticking with the time of surgery, NOT the time of discovery of the tumor (which is often months before in patients in denial or in countries/regions where medical care is not easily available). Again, these findings are not specific for her2 breast cancer, which may behave differently.

StephN · 02-22-2007, 10:46 PM

Hi Michele -

Good question.
But you did have radiation, so you did the alternative to mast.
Have you mentioned this idea to your med onc?? They usually only do this for patients who have the positive genetic testing.

Personally, I would not want to get myself run down by these surgeries. It is a hard healing road.

Keep asking the questions. I am sure others will weigh in.

RobinP · 02-23-2007, 09:51 AM

Michele, I do kind of agree with Lani. I first thought about the threat of additional surgeries when Gina was on these boards? If you recall, she mentioned that she didn't have additional reconstructive surgery because she feared that the surgery would stir up her2. I think she based this on circulating imflammtory growth factors stimulated by surgery, as Lani has indicated. I also think with proper erradiation and surgery, lumpectomy is just as effective as mastectomy.In the end, I think you got to hash out the pros and cons and make your choice Michele.

Lauriemn · 02-23-2007, 10:28 AM

Well, I had to have a mast, but I struggled with if I should have the "good" side removed also. I had delayed reconstruction in Sept. and I decided to keep it.

I based my decision on 2 factors, my genetic test was neg and I spoke with the radiologist who did my last mammogram and he said my breasts were not dense. ( I was 37 when diagnosed , so never had a mammogram) He said the lump was clearly visible on that first mammogram. I feel that if I ever develop it on the other side, at least I would hopefully discover it alot earlier than I discovered my first cancer.
I don't think having another mast would give me any more peace of mind. I already had to have a biopsy along the scar line of my mast, as my onc found a lump during my 3 month check up. I have as much stress about the mast side and a recurrance on that side, as I do about my "good side"

laurie

michele u · 02-23-2007, 06:24 PM

you all make me feel better. I've just had gotten alot of "why didn't you do bilateral mast" quiestions lately. My tumor did show up on mammogram. I'm happy with the way my breast has healed in. I got a "free" reconstrucion with as much swelling that filled the lumpectomy area. Even after i had 2 lumpectomies, no one can at all that i had surgery.

Sandy H · 02-23-2007, 06:33 PM

Michelle, are you IBC as you said you were diagnosed stage 111b? I was told anyone diagnosed at stage 111b is IBC if not IBC then it will be 111a or c. Where it has been 3 years perhaps, you should leave well enough alone. This has to be your decision of course. Also can you get an oncologist do bil now and will your insurance pay for it? Also if you have reconstructions you are looking at lots of surgery and healing here. You can end up with infections as I am starting to get paranoid of these hospital infections these days. My sister died from one. Don't want to scare you but as a nurse I am sure you understand where I am coming from. These are things to research and think about. Maybe, you can talk to a few oncologist and see what they suggest. Wishing you well in whatever you decide to do and keep us posted. hugs, Sandy

Sheila · 02-23-2007, 06:51 PM

Michelle
I would really give it some thought...I was doing fine as Stage 1 when I went in for reconstruction....I changed to stage IV while doing it...no one can say if the surgery suddenly stirred things up, but I will always wonder.

Chelee · 02-24-2007, 01:20 AM

I had just made up my mind to have my other breast removed. (Simple mastectomy) Surgery is even scheduled. It was a tough decision. What helped me decide is having to fight to get a 6 month mammo which I was denied and had to wait for a yearly one that now shows 4 masses consistent with lymph nodes. I have axilla, breast, nipple, & areola pain. Breast is enlarged. So I decided to just have it removed. (Another big factor for me was I CAN'T have radiation...so I *thought* this was a good preventative measure.

Now after reading Lani's post and hearing from Sheila this makes me very nervous. Now I need to re-think this.

Chelee

Sheila · 02-24-2007, 09:49 AM

Chelee

Surgery has to be a personal decision....I don't want to influence anyone, but I was node neg. when I had my mastectomy, and it seemed coincidental that when I was reopened for the tissue expander, suddenly (3 months later) it was present in my lymph nodes...could've happened anyway but I will never know...made me wish I had left everything alone.

michele u · 02-24-2007, 10:00 AM

Sandy,

i'm not IBC. I think they stage me that way because i had level 2 positive lymph nodes in my neck.

Barbara2 · 02-24-2007, 01:49 PM

Don't most doctors still feel that surgery does not stir up cancer cells? Has there been any proof that surgery after cancer might make cancer cells more active?

That was what I was hoping, anyway, when after chemo, I had heart surgery to correct SVT's, then later another mastectomy to get rid of the other very dense tissued breast. My very large tumor had not been seen in either a mammogram or ultra sound. I wanted to get rid of the other one just to give me peace of mind.

Since then, they now have new technology (name?? something digital, I believe) that is supposed to detect EARLY breast cancer even through dense breasts. If that is true, and this new piece of technology is more dependable, then maybe one would want to "keep" their "good" breast.

Lots to consider....

lia · 02-25-2007, 03:53 PM

After a long period of agonising indecision ,I m currently in the process of getting a preventative mastectomy on the left side and then bilateral reconstruction using my stomach tissue , cant remember the medical term .I will be 2 years post surgery ( WLE initially , then mastectomy ) on march 1st. Reading this thread has reminded me of how convinced i was that the biopsy had stirred the cancer cells up , tumour was 7 mm on diagnosis and then 28 mm at wle then 33 mm and multi focal after mastectomy .i have strong family history but no gene found , bc was er / pr + and her2 + , node neg, mix of ductal , dcis and lcis. Now wondering if surgery is sensible . . I dont have to have it but as my bc was only found by chance in a family history mammo , and only one tumour showed up , I dont have a lot of faith in my own powers of detection or those of the mammogram. What are people s views on preventative mastectomies and on reconstruction ?? Thankyou !

Lani · 02-26-2007, 09:51 AM

it was included in a press release on an article discussing why african americans are twice as likely to die from breast cancer as european americans. It seems that the risk of surgery activating dormant distant metastases is felt to be greater in premenopausal women. Hope the new info helps.

Margerie · 02-26-2007, 02:47 PM

Boy this is crappy news for me. I was premenopausal and node +- had mastectomy, then I have had a bunch of surgery since: Ovaries and gall bladder, then bilateral DIEP (preventative prophy R side- tested BRCA negative, but was burned by dense breasts on a mammo before, was going to have to have a lift/major surgery on that breast anyway to match reconstructed side), thyroid surgery, port placement surgery, and recently hernia repair and part of Stage 2 reconstruction (have to wait until June for nips).
But then again I had never had surgery (or any other disease) before my triple + cancer was diagnosed.

Does being on herceptin help? I am assuming none of the initial surgeries are done while on herceptin.

Chelee · 02-27-2007, 06:36 PM

Margerie, I'm with you on this one. Makes me very un-comfortable about my recent decision to have a prophylactic mastectomy. I already have it scheduled for March 15th. After reading these posts here...I ran across an article on MSNBC on the topic Lani posted about.

It mentioend being peri-meno and surgery stirring up things. (Like you, I had pos nodes also.) I am peri-meno...and I am on the end of getting herceptin. Now I am not so sure this is a good idea?! Plus if I go through with this mastectomy...next in line is an ooph...that I KNOW for sure I am going thru with that...I have to because my onc is playing games with me. I can't deal with it anymore...plus one ovary had a cyst of some kind and it needs to go!
I swear since this bc nightmare...its always something! What to do...when to do...if you should do...to many choices/decisions! The last thing I want to even take a chance on is "stirring up" things. Argh...I have a headache!

Chelee

Becky · 02-27-2007, 08:51 PM

Herceptin will help protect you. This is one reason why I got my ooph and other things done while still on it.

Chelee · 02-28-2007, 12:53 AM

Becky, I am happy to hear the herceptin will help. I sure would of felt better had I still been on the "AI" too. I would of had my ooph done had I not ran into all this breast & axilla pain. I hope I can get that ooph schedule asap after my mastectomy. The GYN made it sound like it would be no problem, so we will see.

Chelee

astrid · 03-01-2007, 06:34 AM

I had a lumpectomy, mainly because my sister had a mastectomy and it did not save her. The survival rate does not improve with a mastectomy. She was 40 years old were she died 11 years ago. She was only stage 1 with no node involvement.

coker57 · 03-04-2007, 09:29 AM

IBC recurrence after lumpectomy/lymph dissection surgery 12/1/06 1/6 & clean margins, caught just before rads. I'm scared to death to now have a masectomy. I don't understand where they know where to cut, where does this skin inflammation begin and end. I also read a lot of scars are long time healing if cancer remains in the skin, rads are delayed, and reconstruction is difficult.
I'm currently on gen/cisplatin/herceptin and seeing the redness disappearing. No mets currently. 2nd opinion on the 17 of where to go from here.
I'm so confused about what the right thing to do.
It seems regardless of what you do this thing has a tendence to return and I'm not sure going thru another surgery recovery is worth it. anyadvice out there is needed...........thank you for your web sit. I use to come here for her2 and now I'm here for IBC
I'm still learning how to use this site. Chemo brain doesn't help..........

You guys are a wonder to me.