Bilateral or Unilateral?

BethL · October 2015

OK, I'm so confused. I was diagnosed with cancer last August, my first cancer dx was 2005, same side/same area. Not sure if this is recurrence or new cancer - either way... I had a ductal excision due to bloody discharge that was assumed would be b9, but she pulled a 7mm invasive tumor with DCIS in the margins. BTW - MRI, u/s and mammogram did not show cancer. I got pretty ill the beginning of September with a post op infection requiring hospitalization 2 weeks after surgery, so everything was delayed. Then she set me up with an MRI to see if any other cancer shows (remember it didn't show the first time - how do I trust that?), and then reached out to my radiation oncologist to see if preserving the breast and reirradiating was an option if MRI was clear- which turns out it is.

Was pretty much convinced I should do a mastectomy and met with PS last week. He thinks I should do a bilateral. Says I've had cancer twice - do I just want to keep coming back? I know that mastectomy doesn't mean you won't get cancer - so it offers little assurance to me but he thought cosmetically I might be happier, more symmetry etc.

So then I make the call to my onc surgeon and tell her I'm going with BMX. She said she supports me but had to tell me there was no medical indication for the bilateral. And removing a healthy breast could bring on more complications. UGH!!! I 100% trust them both, and I know it is my decision. They both just seem to have their own idea on this. This entire weekend all i've done is think - I don't know what to do. Scared to death! Will I ever know what to do? If I hear one more person say "just take them off" "it's no big deal". Its a huge deal, but one I know I have to endure and I know only here is where anyone understands.

So,I would love to hear from someone who chose unilateral vs bilateral, and are you happy with the results? If you had recon, what kind did you do to match the two sides? Ho well do they "match"? Those who chose BMX - do you have any regrets? My plan would be expanders in at surgery time, vertical incisions, nipples not salvageable - at least not on the previously operated on and radiated side.

Beth

MissBee123 · October 2015

Hi Beth,

I'm in the same boat as you and debating between a unilateral or bilateral. A few questions to consider:

1. Will having a bilateral mastectomy give you peace of mind about recurrence? For the record, a mastectomy does give you a slightly lower risk of recurrence (versus lumpectomy) but the survival rates are the same for either procedure. I don't know the statistics for recurrence in uni versus bi mastectomies.

2. If you have a unilateral, are you comfortable with the fact that your breasts may not match? (For implants, consider that as you age your natural breast would begin to descend while your implant will stay perky. For me, this part of why I am choosing a flap)

3. When your breast surgeon said a bilateral, "Could bring on more medical complications," did she mean simply from the surgery? I would ask her to be more specific in her argument.

Throwing in my personal .02, if it were me I think having cancer twice, one of which did not show up on my screenings, would be enough for me to opt for a bilateral. It is always a difficult decision to make and it sounds like you are considering all your options. Best of luck to you.

Ridley · October 2015

a couple of more questions to consider:

- will you have chemo - if so, complications could delay that starting, so might be better to have a unilateral now to reduce that risk

- what type of help do you have at home - for some women bilateral would require more help, so if you have that help now, it might be a consideration

- how will you feel about future mammograms, etc if you have a unilateral?

I did have bilateral. We found dcis in the 'good' side Jeffrey surgery, but I was set to have bilateral anyway. I had DIEP recon, so there were reasons related to that type of surgery that impacted my decision, already knew I wouldn't have chemo, and had a great support system to help me recover. Finally, i knew for myself, I didn't want the anxiety of future mammograms, MRIs and future biopsies should they be needed.

Good luck with your decision.

BethL · October 2015

She was talking about surgical complications related to a surgery that was optional. It's like I know what to do - I just keep changing my mind. When the PS actually examined me he did say he could match them pretty well since I had a mastopexy on one side last year trying to align it with the post cancer breast.

I know of the research you talk about where bilaterals don't improve survival rates compared to lumpectomies. I have made the choice for mastectomy - just not sure if bilateral. Maybe if I had started off with mastectomy - this wouldn't be happening. My PS brought up something I hadn't thought of... that while I'm not BRCA, he can't help but to wonder if there is another genetic link. Two cancers - I have to wonder too. If I were BRCA we know BMX would drastically decrease my chance of cancer, but what if there's another link? Perhaps if will improve mine too? He said that if it were his wife, he would tell her to do a BMX. But I think its easy for him to say, when he won't ever have to make that decision.

Beth

muska · October 2015

Hi Beth, do you mind sharing your age? I was 54 at diagnosis and had to make the same decision you are facing now. My medical team said there was no need to do anything on the other "healthy" breast. Radiologists said they could monitor it by regular scannings. MRI prior to surgery didn't show anything in the "healthy" breast or lymph nodes. I eventually chose BMX, surgical pathology results are below. They also found very extensive LCIS in the breast that looked fine on imaging and LCIS in the cancerous breast.

When I was in still in the decision making process I asked all docs and nurses I met with - all women about my age or older - what they would do if they were in my shoes. All told me they would opt for BMX. I am not trying to sway you either way, just sharing my experience. My thinking was, if both breasts showed mostly the same pattern over many years and then suddenly something happened in one, why wouldn't the same thing happen in the other some time down the road? I was also not happy about the prospect of being scanned one way or the other every six months, especially after my history proving scanning doesn't show much in my case

MissBee123 · October 2015

Beth, have you been to see a genetic counselor? I have a secondary diagnosis of thyroid cancer due to the NRAS gene mutation. My breast surgeon told me when they initially tested for BRCA they only test the 6 most common mutations. Now that they know I have a secondary mutation she sent off for further genetic testing of more rare genes.

Every hospital should have a genetic counselor and with a referral from your breast surgeon, it might be worth visiting.

Denise-G · October 2015

I was going to mention genetic counseling as well. I had a UMX as I wasn't ready to part with a healthy breast 4 years ago after my Stage 3 diagnosis. There had been no family history of breast cancer. BUT 1.5 years later my 80 year old mom was diagnosed with Stage 1 BC. Geneticists still thought it was a fluke because of my mom's age. THEN, my sister was diagnosed this year - also Stage 3.

RED FLAG - my sister has the Chek 2 1100 delc mutation so mom and I are being tested right now. My MO said he's about 95% certain I have it and would highly recommend the other breast coming off.

Looking back, if I had any inkling of this, I would have just done the BMX. But I still think it was the right decision for me at the time. Wishing you well with your decision.

BethL · October 2015

Oh my, I can't tell you how much it means to get such great feedback. Thank you all so much.

Ridley - I don't think I'm getting chemo. I know that sounds crazy - doc hasn't mentioned it and since diagnosis, it has been a whirlwind of getting other tests done to gather information for me to make a decision based on realistic options. I did read in a note from September that I would be sent to med onc after all this. I know my cancer is ER+/PR- ( was ER+/PR+ first go around 10 years ago). From what I have read that may mean Tamoxifen resistant, so AIs?. The only mention of chemo in the note was dependent upon final pathology from my next surgery. As I took that, if more invasive cancer is found, then chemo. I don't know, and honestly haven't asked because I can only handle so much right now. I had a ductal excision/biopsy and my tumor was 7mm invasive, with dcis in margins - so surgery is needed no matter what I choose. Do they typically do chemo for 7mm? 10 years ago the "rule" was 2cms or larger, or nodal involvement. But I imagine, things might be different now? I wonder if because this is a recurrent or new cancer if that makes a difference.

As far as help at home - well there is minimal. I have four sons, two are adults living outside my home, one is 15, the other is 12. So they're not babies, but they still are minimal help with their school and sports. I am divorced, and my mother lives 2 hours away - but is retired and can come and help. I started dating someone in July - boy he had no idea what he was getting into!! Honestly, he has been great - it's been me who has been pushing him away. Still not sure if I can handle a new relationship right now, but selfishly worry that this may be my last chance. I know, if I heard that from someone I'd argue it but being in these shoes, you worry.

Muska - I am 48, was 38 at first diagnosis. I feel much like you did. I don't know if I can handle the screenings after this. But what is the screening after a BMX? A friend of mine had one and she said they just physically examine her - along her scars and nodal area. I feel like I want to find it before I can feel it. Do you still get some type of MRI or CT as a screening? I have this sick feeling that something is brewing in the healthy side. Can't help it. My breast tissues is very dense - and the word "diffuse" is used in every mammogram report.

MissBee & Denise- I haven't seen genetics in 10 years - I had no idea there were other markers being identified, so I will definenetly be requesting an appt with genetics, either way. I don't know of any family history, but my mother is adopted and we have no medical history of her side of the family, and limited on my father's side. His mother died when he was young (not sure why, makes me wonder), and he has had a step mother since he was very young. MissBee - I saw your post in another thread about the thyroid thing - I wonder about myself. My thyroid is ginormous - was biopsied 12 years ago - "not enough cells obtained". So we watch it. I have ultrasounds every year, around 6+ nodules. So far so good.

Thanks so much!!!! this means so much to hear from others who have made this difficult decision. Waiting for a surgery date still.

Beth

BethL · October 2015

Whoops - left this out - Nodal involvement is unknown. Shes not sure if she can map to a sentinel node because of my previous node surgery, radiation and surgery. So a total node dissection is being considered. Yikes.

KellyAnne13 · October 2015

Hmmmmm... the fact that they didn't see your existing cancer when screening really would scare me. Can you live with that if you choose a UMX?

I am 48 with triple negative cancer 2cm, no nodal involvement and I chose a BMX. There were complications with my sx and at the moment I only have one side reconstructed but I am very happy with my decision. I know that down the road my breasts will look fine, I have even adjusted quite well to what they look like now. Even if they don't it is the piece of mind that I needed. I am BRCA- but have a strong family hx of breast and ovarian ca so this was definitely the right choice for me. I don't want to always be wondering. I also had a bilateral salpingo-oophorectomy last week. I just really wanted to do all that I could right now, while I am young and can weather it. I don't want to ever have to face this beast again!

Having said all of that, it is such a personal decision. Best of luck

Optimist52 · October 2015

Hi Beth

We have similarities as I've had an 11 year gap between diagnoses. Mine has been ILC both times and this time it never showed on mammograms. I'm seeing my BS in two weeks to discuss further surgery to remove other breast and probable DIEP reconstruction for both. She is also going to talk to me about 'panel testing' for genetic mutations. I've lived with a mastectomy and no reconstruction since July this year and I know deep down that I need to have the 'healthy' breast removed because ILC often doesn't show up on mammograms or even scans. Only MRI and it sounds as if not always with that.

I'm struggling with the reconstruction decision because the lengthy surgery and recovery concerns me but if I don't do it at the same time as the mastectomy, I know I will never do it. I have a husband and two sons aged 21 and 17 at home. They weren't all that helpful after my last surgery to be honest! My mum and sister are nearby so I know they will help. I find that males are not exactly that intuitive about what needs to be done!

BethL · November 2015

Optimist - my husband and sons were not very helpful my first time around (although then my boys were much younger - and the husband is gone now....good riddens). Now my two oldest are adults and not living at home and my other 2 youngest sons are 12 and 15. We spoke tonight about what a mastectomy is. They looked at me like I was crazy, horrified really. But it was a good conversation overall, and I stressed about how much I would need them to do their part. They've been babied a long time, I need them to step up and pick up after themelves, etc. I think we do this to our sons, hence mama's boy! I love them dearly but they really are clueless!

I'm worried about Christmas preparation so I"m going to start decorating in about a week or so and Amazon will be my best friend for shopping. My mom is 2 hours away but I know she will come help if needed. I have friends, but have a hard time asking for help.

I wish someone would talk to me about panel testing. I will bring it up with my surgeon during my preop appt.

Beth

Bilateral or Unilateral?

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