Cancer again -- Unilateral or Bilateral Mastectomy?

Anonymous

Cancer again -- Unilateral or Bilateral Mastectomy?

Willow816

Hi Everyone,

I am having a very hard time choosing between having a unilateral mastectomy or a bilateral mastectomy, and I could really use some opinions/advice/stories from woman who have also had to make this difficult decision.

A little background information: I was diagnosed with triple positive invasive ductal carcinoma grade 3 (1.6 cm)  in August of 2012 -- 2 days before my 23rd birthday.  I ended up being treated with targeted therapy which consisted of Herceptin, tykerb, Lupron, and letrozole.  I am now taking tamoxifen for 10 years.  My tumor responded immediately.  After 6 months of medication,  I had a lumpectomy and sentinel node biopsy which resulted in negative margins and 0/8 nodes.  I followed up with radiation.

Fast forward 4 years: I am now 27 and cancer is back.  It is in the same area of the same breast; however, we are not yet sure if it is considered local recurrence or a secondary breast cancer because pathology results regarding the specifics of the tumor are not back.  The only thing that I do know at this point is that it is invasive ductal carcinoma and measures 5mm.  Naturally, my surgeon and oncologist are recommending mastectomy.

Here is the problem: I immediately decided that I would get a double mastectomy with reconstruction because of the recurrence.  However, my surgeon does not believe that a double mastectomy is necessarily warranted because of the small size of the tumor, and is recommending only a unilateral mastectomy.  I am aware that having a double mastectomy does not necessarily increase survival rate, and I've been told that breast cancer is just as likely to come back somewhere else in the body as it is in breast tissue, but I just can't wrap my head around this.  As I'm sure with anybody, I'm having a very hard time with this recurrence --- especially since I initially responded so well to treatment.  Furthermore, I am still on tamoxifen, and I am afraid that it is not working or that the characteristics of the tumor have mutated.  At this point, I'm feeling like I'm never going to be safe no matter what I do.

I just need some advice on what others in similar situations have done in the past.  Did you have a unilateral or bilateral mastectomy? What was your experience with either one? What is your opinion on what you think I should do? I know its hard to say, but no one I know has been much help because they have never been through this.  I just really need some help with making this decision.  Your experiences, stories, and opinions are so greatly appreciated.  Thank you. 

Pessa

I was diagnosed at age 58 and am now 65,so I am in a completely different place than you are . My reason for a bilat Mx was because the tumor was hard to find using using MRI, US, etc and, more importantly, I wanted to be as aggressive as possible from the start. I had a bilat Mx, chemo (Oncotype score 28) and am on year 7 of anastrazole. I didn't want to have a recurrance and then blame myself that I should have done something and didn't.

AmyA

Hi Willow. First of all, Big hugs!

I cannot tell you what to do - always remember these decisions are yours, not your doctors, not your family's, yours. Speaking for myself, I would absolutely get the Double. Doctors have to tow the line with what they can tell you. The ones I got close to and trusted the most were the nurses who told me they see most everyone back within 10 years who didn't.

I have never regretted or thought twice about getting my double and my boobs look great.

All the best,

Amy

Jackster51

Wow Willow.. I just have to say how sorry I am that you have to be here making these horrific decisions at such an incredible young age. I was 46 at diagnosis, and I thought that was young! I also can't tell you what to do. I will tell you that the only reason I chose double was for cosmetic reasons.. I was very small breasted - barely an A cup - and would have been difficult to match up. That being said, I'm not sure I can say I regret it, but I can say that I really really miss having nipple sensation. Sexually, it effected me pretty hard. I know this isn't in your top priorities right now - survival is - but at your young age it is worth thinking about. I have never heard the stats that Amy stated above. I've only personally read that a double does not prolong life anymore than a single. Dr.Susan Love - writes a lot about this. You can always start with a single and see how you cope with that emotionally and physically - and get the other breast removed at any time down the road if you feel the need. You don't have that option the other way around. Whatever you chose is the right option for you. As you have unfortunately experienced already, there are no guarantees with this stupid BC, so do what you feel is best for you, and it will be so. Will be thinking of you.

gracie22

Hi Willow, did you have genetic screening, and do you have a family history of BC/ovarian cancer? I assume that this has already been addressed since you are so young, but thought I would ask since that should figure in your decision; a BMX would be more acceptable to your docs if you had a BRCA mutation, or another genetic indicator for breast cancer. If you don't have a family history or a genetic marker, the stats say that a double mastectomy does not confer an additional benefit to overall survival. However, it does have a small benefit as far as disease-free survival goes (local recurrences such as the one you are having now are slightly more common with lumpectomy vs. mast). Some women choose a BMX to limit recurrence chances as much as possible, and to achieve cosmetic symmetry to the breasts, but you do lose nipple sensation. Checking for recurrence is somewhat easier post mast because so little breast tissue is left (no mammograms which are nearly useless on the dense tissue of young women's breasts anyway; ultrasound or MRIs used.) You are so young that I hesitate to give advice because you are in such a different time of life than me--I have a daughter your age. However, to be completely honest, the fact that your body developed an aggressive cancer at such a young age and recurred is concerning. The stats on recurrence etc. are primarily based on middle aged to older women who make up the huge majority of breast cancer patients; I would not rely as much on assurances about unlikeliness of cancer occurring in the other breast since you are comparatively so much younger. Your body will be pumping out a high volume of estrogen for many years to come, and that would make me want to be aggressive with it and do a BMX with the best plastic surgeon I could find.

KBeee

In women over 40, mastectomy does not increase survival, but there is a small survival increase for BMX in younger women.

BMX will reduce, but not eliminate local recurrence. The other advantage of BMX is that you'll have symmetry. With a uni, they often have to do surgery on the "good breast to achieve symmetry. That surgery makes it harder to detect cancer because of scar tissue, and also may make them unable to do a sentinal node biopsy. Previous surgery to the breast alters the lymph pathways, so they are usually unable to do SNB. These are things to consider they may not have addressed.

I will say that my family history sways my thoughts on it. My mom had a uni 20 years ago and had the other breast removed last year sue to cancer. She was really frustrated that it was not an option 20 years ago; if it was she would not have had to deal with it again. So her experience definitely clouds my judgement.

The most important thing is not what anyone here thinks though. It is what YOU are most comfortable with. Sorry you have to deal with this.

wallan

Hey there Willow.

So sorry you are dealing with this again. I understand how difficult a recurrance is to deal with after all your treatment. I had BC 13 years ago and had an unilateral mastectomy. I was 41 years old. Now here I am again with another breast cancer in the other breast. I wish I had a bilateral mastectomy 13 years ago. I have read that the younger you are with your first BC, the higher your risk of getting another BC in the other breast as time goes on. And so, this risk goes up over years especially if you are younger at first dx. I was told that the risk is 0.5% every year that passes from my BS. So your risk is definitely higher to get BC again. Plus, I used a prosthesis for years to even myself out with one breast, and suffered from self-consciousness in bathing suits and more revealing summer clothing. So now this time, I am getting reconstruction along with my next mastectomy.

But this is me. It is true they will monitor you closely for any more recurrences over time in the other breast if you only have a unilateral mastectomy this time. You may be able to find a prosthesis that looks natural and great too. That way, you can keep one breast if you ever decide to have kids or breast feed etc etc.

It is a difficult decision and I am sure your intuition will give you the right answer that is best for you.

Hugs to you and let us know how it goes. This site is awesome for support.

wallan

EastcoastTS

I'm still new to this "journey" but can post my reasoning behind a BMX. One I agonized over -- you can read my posts around and about regarding. My surgery: 2/27/17.

YOU have to decide what's best for you. It's all so personal.

Here goes: I was on the path to UMX due to the MRI finding another area of concern about three weeks prior to my surgery date (when I still had to decide what to do). So that decision was made for me. The reason I went BMX were many: family history, 49 (not young, goodness, like you -- but younger a little for BC), very small breasts (AA/A at most), completely dense = the fact that nothing was seen on diagnostic mammograms that I had been having since the age of 39. I even believe, due to radiologist's comments, that they would have missed on the ultrasound if I did not point out the lump. Mine was called "occult". And I could just imagine begging for MRIs (I wasn't comfortable with mammos alone any longer) every year or every 6 months or whatever. I was scared of more surgery. I was. And longer healing -- but honestly, what I projected in my mind was worse, and I'm glad they're both gone. This has not gone badly at all -- and anyone I spoke to on the cosmetic side (I talked to 3 PSs) said: go BMX due to your size. We'll never get symetry. My mother also got lumpectomy in 2009 and wishes she had gone BMX now. Though she has been fine, no issues since 2009.

My thoughts with you as you decide what's best for you. But don't let fear make the choice, if that makes sense. Fear almost kept me from going BMX -- and now I'm glad I did.

Lula73

Hi Willow-

So sorry you're having to deal with this again. Hopefully the advice you read here will be able yo help you with your decision. It sounds like you were at peace (as much as any of us can be) with a BMX then your Dr is trying to talk you out of it. I guess i'd have to ask him why not do a BMX? Odds are you'd have to have something done to the other breast for symmetry so any reasoning that includes only operating on 1 vs 2 is out the window.

I work with a lot of Dr.s. Some are more aggressive, some are less aggressive, some just follow guidelines, some follow guidelines but then include their personal experience and gut feelings into their thought processes on practicing medicine. Medicine is not an exact science. None of us have all the answers. Dr.s rely on results from studies to create guidelines. But even with all the strides we've made we still don't have studies where 100% of participants were cured. Until we have that, medicine is a science, an art and a best guess all rilled into one. Based on what you've stated, it sounds like your Dr is a follow the guidelines and thats it type of Dr. (I havent met him and i could be way off base). But it also sounds like you're applying personal experience plus an aggressive mindset to the guidelines (something the Dr is not doing.) There is nothing wrong with either mindset, however at the end of the day, it is YOU that goes home and deals with the outcomes from these decisions 24/7/365. He just has to deal with these decisions for 15 minutes at each office visit plus any phone calls.

My advice- go with your gut and what makes you feel the most comfortable. Quick story- I used to sell wedding gowns many years ago and I'd tell the brides that they'd know they had found THE dress when they put it on-they would just know. I firmly believe its the same with the MX decision. You know when its the right decision because you're at peace with it and you're able to move beyond the decision to deal with the other things that need to be done. (My husband could not wrap his head around his so indecisive wife being at peace with a decision this big). This doesn't mean you'renot still upset, angry, anxious, nervous, scared, etc. just that you're ok with it knowing its what is right for you.

Beyond BMX vs UMX, have you looked into your different options for reconstruction (assuming you're planning reconstruction)? That may make a difference in your choice too. Especially if you're looking at having natural tissue reconstruction (which I highly recommend) instead of implants. Looking at before and after photos of MX with reconstruction done by the Dr.s at The Center for Breast Restoration Surgery in New Orleans (NOLA) helped me better know what I'd look like after and what to expect. I traveled there for my BMX and Recon in Feb and could not be happier with the results and the experience with their group and the hospital. Let me know if you'd like to ask any questions about the process, surgery, recon, the group, or anything else.

Good luck to you! I hope this helps you with your decision.

ohnonotagain20092016

The 2nd time I got breast cancer, December 2015, I had a bilateral. I am now currently going through the reconstruction process. I wouldn't have done it any other way cause for me, I wanted to be "the same" on each side and I didn't want another "full breast" for cancer to grow in. Good luck to you - it's a hard but very personal decision to make. The emotional journey is very hard.