Recurrence after bilat mastectomy?

Cherrie,

After a diagnosis of BC, there is a risk of both distant recurrence and local recurrence.  Having a BMX doesn't reduce the risk of distant recurrence (a recurrence of BC beyond the breast area, i.e. mets) and therefore, as Barbe explained, it doesn't decrease the mortality rate.

In most cases, having a BMX does bring the risk of a local recurrence (a recurrence in the breast area) to around 1% - 2%, just as you thought.  A 1% or 2% risk is really low - but it's not the same as nothing. Approx. 300,000 women will be diagnosed with BC (invasive and DCIS) in North America this year.  If I remember the stats correctly, I think that about 40%, or about 120,000 of these women, will have a MX. Only 1% - 2% of these women will eventually have a local recurrence - but that's still 1,200 - 2,400 women!  And that's just those who are diagnosed over the course of one year. If you consider all women diagnosed over a 5 year period, as many as 6,000 - 12,000 women who have a MX will have a local recurrence.

This discussion board includes women diagnosed over many years, so it's not surprising to find so many women who've had a local recurrence after a MX.  They are all part of that 1% - 2%.

The good news is that of the 120,000 women diagnosed with BC every year who have a MX, about 118,000 won't have a recurrence!  

Dear All,



Thanks for the encouraging words! Sorry I have not posted sooner, but I had surgery to remove the lump that had invasive lobular on Oct 19th. The good news is all the tests, like the bone scan, brain MRI and CT showed no evidence of disease. The pathology of the lump and the tissues around it ( they took all the skin that I could spare, and some muscle to be safe) showed that it was just one lump 1.2 cm of ILC, and it was localized to that area under the skin. Nothing found in the muscle. I got a huge seroma of sloshy fluid, that has taken a few weeks to go down.



I went to the radiologist for the placement CT and markings today. I saw the readiatn onc a few weeks ago, and that was an odd experience. He told me that I should have been to see him last year, and that having 2 axillary nodes (the first 2 of 3 sentinel nodes) last year should have been reason enough to get radiation, in addition to the chemo. I read so much, and did not see this info last year, but now have seen reports saying young BC should consider radiation even if one node has cancer in it. He said that it would likely have gotten this last year, but if not, it would have recurred in 3-5 years, but that is only a 10% chance, versus not doing the radiation last year was a 30% chance for recurence. He was really upset at my onc and surgeon over this!



I can't turn back time, but am thankful that the cancer recurrence was localized, MD hopefully radiation this time will keep it away for good. The doctor is recommending radiation to the breast area, axillary region, subclavicular ( under the collar bone) and wants me to consider internal mammary node area in the center of my chest. That is controversial, and I am concerned about the radiation risk to my heart and lungs. My dad's side of the family has a high number of people that have had left ventricle wall thinning after either a viral illness or other trigger, which is why I did taxotere/cytoxan for chemo instead of AC/TC to spare my heart. My tumors were on the left breast to the left of the nipple and below it, not towards the middle of my chest, and the 2 nodes with cancer were the ones nearest that area in the axillary chain of nodes. Even though I had 2 nodes with cancer, they were normal size, and had very little cancer in them, so he is concerned that no one would know if it was in the internal mammary nodes or not. He is also concerned that it recurred, and I had gone through chemo and tamoxifen.



tey have stopped the tamoxifen, since everyone is baffled why it did not work, but maybe it did, just not on this area. I had asked about the metabolic enzyme test since I had read last year that some people have a metabolic difference that their body does not process the tamoxifen like normal, but last year, and still today the doctors say that the new findings don't show that is a significant issue to worry about. Anyways, the new plan is radiation for 6 weeks, (5 of one way ,and the last week smoothing else). And I need to start luporn injections to put me into chemical induced menopause, then go on an aromatase inhibitor, and stay on Lupron shots to keep me in menopause, or I can later ge my ovaries removed ( they want that regardless in a few years, as they feel I am at risk since my grandmother had a few rounds of breast cancer, then rampant ovarian cancer that did her in.)



I am 41. This is alll so sange to contemplate. The uncertainty, and risks of all that I have to choose from is ridiculous, but I am going to try to be brave, pray hard about what it s the right choice on if I should do the intramammary area in the center of my chest or not with the radiation, and hope that forced menopause will not be a nightmare.



I really appreciate everyone's support and insights! It is so helpful to have these forums to talk to people that are dealing with this too, since I don't seem to meet people in my daily life that even get it about breast cancer, or cancer most of the time. Perhaps if I was in my 80's this would not be such a hard choice, but I decided that I really will find it a privilege to get to experience being elderly if I kick this for good. I just need to figure out the best way to try to do this, without killing too much of my heart with radiation.



No doctors will now give me any odds, as they say I am in a class all my own to have this recurrence within a year after chemo, and tamoxifen, and having 2 kinds of cancer last year, with the lobular being resistant to chemo, tamoxifen, etc. I just hope and pray that this is all being fixed surgically, but only time will tell if any cell got out to do it's damage in the rest of my body. I am hopeful that it hasn't since my tests all look good and the same as last year. I would like some odds, but I guess it doesn't matter much when you fall into the tiny percentage of people 1-2% that get a recurrence of cancer after a mastectomy within a few years or less after the initial treatments. I feel very blessed that it does not look like it has spread. That was my biggest worry, and I was not sure how I would be able to handle that, since last year all was clear.



I guess maybe it would have been better if I had radiation after chemo ended last fall, and hope doing it now will make up for not having it earlier. I am glad that it looks like it was all cut out with surgery, and maybe if I had done radiation last year, this still could have popped up, but I would not have any options to do it again. The mental stuff that goes on in your head with cancer is worse than any pain.

SFKold - sending yo love and hugs xox

I just noticed "Keeping Faith's" quote above my post:  I surrender to God and the Angels and I choose PEACE.  Beautiful.  God bless. 

Cookie, if the mass is 2 years old, I wouldn't worry about it. It's probably fat necrosis or scar tissue.

Well I found a lump last week in my BC breast. Diagnosed 3/17/10 bilat MX with recon, AC/Taxol dose dense and Tamoxifen.  I have an ultrasound tomorrow.  Fingers crossed. 

I was diagnosed with SOMETHING after a bilateral mastectomy! 5 years and 2 days after my initial diagnosis, my oncologist felt something under my right arm (Original cancer was in left breast). Sure enough, after ultrasound and biopy, I had four cancerous lymph nodes on the opposite side of initial cancer. My onc was sure that I must be stage IV, since it was so far from the primary site. He figured it was in my bones. However, a PET scan showed that the cancer this time is only im the lymph nodes that they saw, so onc is not sure if it's a recurrance or if I may have had a second breast cancer at the same time. BUT I am so lucky, I am having 6 cycles of taxotere and cytoxan this time, had surgery to remove nodes and  ovaries, will start rads as soon as I'm done chemo, and then Femera. Sadly, so many of us are under the impression that once you remove both breasts, you're finished with the beast. It can be disheartening to know that this isn't always the case. Good luck to all of you!

I'm very sorry to hear that. This post is really freaking me out. I just finished my chemo in May. After having both breasts removed, I thought I was good to go. Hopefully I'm jumping the gun. I found two lumps. One is right on my chest, the other is in my armpit.

This was found in the breast that had ivasive.

I have had several surgeries to test little lumps found post masectomies - all have been fat necrosis.  

Hi Ladies,

Has anyone had better odds (or heard of any positive statistcs) after having total hysterectomy for ER/PR+ Her2-?  I had a BMX on July 6th and am scheduled for foob exchange October 30.  I am considering doing this because of pre-existing uterine and ovarian conditions.  Will I hit menopause overnight?  I am on Tamoxifen now and sometimes feel like a ticking (sweaty) time bomb.  

So nice having a community of women to share all of this with.  I don't know how anyone could do this alone.  

Thanks!

Hi Laura, I jus joined this discussion board because i was lookin for information on recurrence after bilat masectomy. I am so sorry to hear u had a recurrence, and I hope your doing well. I had bilateral mas last Dec. of 2011 and had reconstructive surgery, I have my last surgery in about 2 weeks. I had dcis stage 0, but a high grade form. I did not need chemo, or rad. I did not even have to take tomox. Did u have digital mammograms done? I need to get checked as its been almost a yr later and not sure of what the best tests would be to have done. I really hope u are doing well, u r in my thoughts n prayers.

My name is Laura also, so on this discussion board  we can label me yankee girl

To all the women on this site, thanks for your input, all info is very helpful..

Yankee girl

OH Katie, that truly SUX!!!! How horrid to hear "you have cancer TWICE!!" You must just be stunned! It will be interesting to see what the pathology of the new cancer is as that may tell you why it came back. Is it new or is it the old stuff hanging around? You are in my prayers and I wish you only the best. You've learned to beat it once, twice should be just as effective, but horribly frustrating.

To all of you with recurrence, I feel for you. When I was first diagnosed in 1990, the surgeon only wanted a MX, no lumpectomy. I went to a top MD for a second opinion, and he said - if you do the lumpectomy, you'll be back here for a MX within the year. Apparently, some of the types (by me intraductal) are so fast moving, that even though I was diagnosed really early at a routine mammogram, you don't take risks. I listened to him, and all was well for 17 years. Then diagnosed in remaining side. They said it was primary and not secondary. So when you hear about recurrences, it is not always a real recurrence related to the first one - just a new familiar but unwelcome "visitor". I also had a hysterectomy etc to minimize risks, and I am happy I did. With bad genes, who knows if it couldn't pop up a third time? I still consider myself very fortunate, that everything was caught in early stages. Reason I am writing all this, is that we just can't expect to be free of CA for ever and ever. We hope it will be so, but even without mets, some of us are prone to get hit a number of times. Got to stay vigilant and do tests on time, and pray all will be OK.                         

countrygirlvt, there are tons of threads in the reconstruction section about finding recurrences and lumps, etc. You will be monitored no matter what you decide, so don't make that part of your decision process!!! Personally, I didn't bother with reconstruction as I really don't care about being flat. I'm not ashamed of it. It had nothing to do with finding a lump or not in the future. Good luck!! Talk to your team about your fears and listen very hard to them.

Susan, my only comment is that we are here for you, sweetie! We can't walk beside you literally, but please know, you are not alone.