Recurrence after mastectomy???

HeatherBLocklear

Recurrence after mastectomy???

HeatherBLocklear

Hi all,

I had a consultationwith my breast surgeon yesterday to explore options I might have for surgery once chemotherapy is over. He told me that even with a bi-lateral mastectomy, there is still a chance of breast cancer recurrence. I was flabbergasted. How can cancer recur in tummy fat?

I'm really interested in hearing from those of you who have done extensive research on issues connected to breast cancer. I'd also like to know what you think is a woman's best chance to get rid of this Damocles's sword once and for all -- lumpectomy, unilateral mastectomy, bilateral mastectomy? Radiation or no radiation? He also said that the need for radiation is now being called into question when a woman is NED after chemo and surgery.

Thanks so much for any input from anyone who cares to weigh in.

Love to all,

Annie Double Hump (but not for long).

beergirl

Annie, the first bs I saw told me horror stories about breast cancer recurring after mastectomy and all the scarring and pain after mastectomy. I got a 2nd opinion from another bs working with a different hospital. She told me bc can come back in the minimal amount of breast tissue left, but it was very rare for that to happen.  The stories about all the scarring and pain were about the mastectomies done 30 years ago. On March 26, I had bilat mastectomies (2nd surgeon). So far, no problems.

JMJ532

Hi,

I was told by my BS that there is a 2% chance of cancer coming back (that is 2% more than someone without cancer) and that it would most likely occur in the chest wall or along the scar line if it were to come back.  I guess I'll be crossing my fingers for a long time!

JMJ

twink

Hi Annie (nice humps BTW) --

BC can recur after a mastectomy because it's impossible to remove all breast tissue.  Skin-sparing (fairly common) and nipple-sparing (less common) mastectomies likely increase the amount of breast tissue left behind following surgery (I have no data on this though).  I suppose if I'd been diagnosed Stage 0 or 1, I would've spent more time weighing the benefits and risks of my treatment options.  As it was, Stage II something, triple negative, 50 years old, I went for all the chemo I could get, the bilateral mastectomy and radiation.  I know the stats don't support my approach (i.e. lumpectomy / rads vs. mastectomy) but, as everybody keeps telling me, I'm not a statistic.  That applies to survival as well as treatment effectiveness. As each new tidbit of info was presented to me along this journey (i.e. you have 3 nodes positive for micro mets), I evaluated the choices presented and went with the most aggressive option.  Here's hopping that I don't have to deal with recurrence but if I do, I won't regret my treatment choices.  I may, on the other hand, regret this glass of wine or the fact that I didn't work out (again) today.

Hugs Annie.

t

HeatherBLocklear

Love to you, Twink, and thanks. Love and thanks to all who responded/will respond. This is such a learning experience for me, a university professor used to teaching others. I'm humbled by the amount of knowledge I find on this site, and the willingness of everyone to share that knowledge and experience with people they might never even meet.

Twink -- enjoy that glass of wine -- you're triple negative, so you're entitled to it!

Cheers,

Annie

LisaSDCA

Yes, there's a chance, even with bilateral mastectomies, but it's very, very small. One can have recurrence locally at the chest wall, in the epidermal junction, etc. But it is the very best way to minimize the risk - down to about 1%. That's why as a very high risk individual (not only premenopausal triple neg., but also BRCA-1 positive) it was a no-brainer to get rid of 'em for me. I know for others there are many complicating considerations. No, I had no indication for radiation as I had clear nodes and my path was clean from the mastx2. I very much wanted to avoid the extra risk from rads (lymphedema, organ exposure, etc.) if I could.

The very best result you can have is a Pathologic Complete Response after neoadjuvant chemo (no evidence of tumor cells macro- or microscopically) but even then you will not get any guarantees out of anyone. We get our Damoclean accessories for life.

Lisa

twink

Oh Annie, I meant to close that posting with my key point (but as usual I got sidetracked talking about ME.... after all, it's all about ME!).  What I meant to say was that you have to make choices that you think you can live with.  Understand your options, research the pros and cons, then go with what you will not regret.  Edith said it best: 'Non, je ne regrette rien'.  After all, this is about more than survival.

Double hugs.

HeatherBLocklear

Mon Dieu -- she listens to the goddess Piaf! OK, now you just know we have to get together. Piaf and wine, an unbeatable combination. I'm also a cordon bleu cook, so ...................... the future is before us.

Annie

beergirl

Wow! Can I join you two for Piaf and wine?

twink

Woohoo!  Texas .. Here I come!  I should be settled in the new homestead by July.

HeatherBLocklear

Beergirl,

Yes, we'll definitely count you in. The only requirement is that you must drink wine rather than beer. Can you handle that, girl?

Love,

Annie

otter

Hey, Annie, good news about the wine!

I was complaining to my onco yesterday about the terrible indigestion I had after chemo tx #1.  We were discussing other options to treat the indigestion, and she was listing some common-sense things to do to reduce the risk of acid reflux. You know, stuff like not eating right before bedtime, and sleeping in a more upright position, and ... not drinking alcohol late in the evening.

I said my dh and I used to have a glass of wine with dinner, but I'd cut out the wine for the duration of my chemo treatments.  My onco said there was no problem having a glass of wine with dinner--I just needed to be careful it wasn't too close to bedtime because of the acid reflux/indigestion.

The issue of alcohol as a risk factor for BC never even came up in the conversation.  I really like my (new) onco.

otter 

beergirl

Wine is good too!

beergirl

Otter, I was taking Ranitidine for acid reflux, but my onc switched me to omeprazole which she says is much better. PCP was treating my chronic cough with the Ranitidine.

Beesie

Annie, as the others have said, even with a mastectomy, a local recurrence is possible in the small amount of breast tissue that remains.  A local recurrence will be either against the chest wall, in the scar line or up against the skin.  The chance of that is generally assumed to be 1% - 2%.  Dr. Love actually puts the risk at 10% but I've looked at lots of studies and I've never seen any where the rate was higher than about 2%.

The more significant recurrence risk for most BC patients (except for those who have only DCIS or very small, low grade IDC) is distant recurrence.  Chemo and hormone therapy (if appropriate) hopefully take care of that, but this risk isn't impacted by the choice of surgery.  This is why bilaterals often are not considered necessary for women who have more advanced BC.  Distance recurrence risk is the same whether one has a bilateral or a lumpectomy.   

Because there are so many variables involved, the decision on which type of surgery is best is very much an individual decision.  Some women feel better having a bilateral, knowing that their chance of local recurrence (or a new BC) is reduced as low as it can be.  Other women don't want to lose their breast (or breasts) and are comfortable living with a 5% or 10% local recurrence risk after a lumpectomy + radiation (and possibly chemo and/or hormone therapy).   There's no right answer - it's a question of what's right for you and which situation you can live with most comfortably over the long term.  You doctors should be able to tell you what your risk level is with each treatment combination, and that should help you decide on the best course of action.

TenderIsOurMight

Just wish to know I think of you Annie, and follow along on your posts. All has been well said above. One's choice of surgery is so individual: minimal removal is the current dogma, yet many of us choose otherwise, I think most commonly to avoid staying on a bc treadmill with studies, biopsies, etc. I did choose a prophylactic contralateral mastectomy, yet needed an ipselateral mastectomy due to disease involvement. I have noticed many less office visits and no tests other than my own exam and an occasional clinical exam as a consequence of this (I have silicone implants). This has lessened the feeling of a Damocles sword in terms of local recurrence and contralateral, not to 0%, but 1 or 2%, which has done well by me.



Distant threat of recurrence is omnipresent. I have hope that here too, perhaps with circulating tumor cell blood checks (doubt bone marrow checks would ever catch on, unless done with radioactive tracer/surface tumor cell marker) a different view towards the value of early microscopic detection of disease will occur. Such would buoy breast cancer patients much, to know they may change or re-introduce treatment sooner than later. In this way too, the dream of breast cancer being changed to a chronic illness would be realized for researchers/clinicians and patients alike.



Soon you'll start Adriamycin/Cytoxan, a tried and true cytotoxic regimen which should greatly add to shrinkage of your tumor. Have a good discussion with your oncologist about Neupogin etc to help keep your white count up, and review food avoidances (fresh foods, non-cooked foods).



All the best to you as you continue with your treatments and to all others undergoing them too,

Tender

Meow13

bump for ocean

dtad

The statement that bc can come back after a mastectomy is true but very misleading. My MO told me that its about 2 percent. Obviously the more breast tissue you have the greater the chance you have of recurrence. Also the more skilled the surgeon the better chance that there is less breast tissue left. Another reason to be very careful how you chose your doc! Good luck to all....