Prophylactic Mastectomy

bruinjamie21

Hi there. Wondering if anyone made this choice WITHOUT being BRCA positive? My mother AND grandmother both had breast cancer, as well as my 1st cousin on my mom's side. My mom was 41 and then had a second primary 15 years later. My cousin was 31. I am now 41, done having kids, done nursing, and am awaiting an MRI guided biopsy after something was seen on my regular high-risk screening MRI. I kind of just want to be DONE with them. I don't think I can handle living in fear and living with biopsies every year. And given the family history, I feel like there's gotta be SOMETHING genetic there, even if it's not BRCA. I am an Ashkenazi jew as well. Wondering if anyone made this choice? Is this a choice I'd even be ALLOWED to make without being BRCA positive? My surgeon knows how I feel, and says to wait and see what the biopsy shows...

Thanks all.

nicreit

Hi Bruinjamie21-- Me, I did-- last year. I did genetic testing & did not have BRCA, but chose to have a double mastectomy in April. My lifetime likelihood of getting breast cancer was about 28% & while that's not 80 or 90%-- it's almost 1 in 3, terrible odds & it's almost 4 times higher than an "average" woman. Add to this that my breasts were very dense & lumpy & that my Drs said I needed to do an MRI every 6 months, in conjunction with a mammogram every 6 months FOR LIFE-- & I didn't want this much toxic exposure (mammo) & worry! I met with a great oncologist to review my options a- monitoring every 6 months, which I had been doing or b- Tamoxifen - no thanks, too many awful side affects & it only reduced my lifetime BC risk to half-- so 14% & then c- mastectomy. It was a tough decision, but I obviously chose "c". The oncologist said something that really struck me-- she said you can go the monitoring route ("a") & she felt confident that if I ended up having breast cancer we'd catch it early. But, she warned, know that even if we catch it early I'd likely have to have a mastectomy, plus radiation, plus chemo, plus Tamoxifen! It was ironic to think that I could end up having to do ALL the awful treatments even if I was diligent with monitoring.... my thought was, why not beat cancer to the punch??

Last year was a long road-- original surgery was in Feb, but I had a nipple issue that needed to be addressed so big surgery was pushed to April, then spent the summer going to appointments for my expanders (chose reconstruction) & then had reconst. surgery in October.

My Mom had breast cancer when she was 41/pre-menopausal-- she had a recurrence at 67 (Stage IV) & passed away at 72. My Aunt/Dad's side (blood-related) had triple negative BC in her 60's so I have it on both sides. My father died at age 61 from a very aggressive form of prostate cancer.

In any case, I do have a BIG monkey off my back & my insurance covered everything (once I met my deductible & annual OOP max). My lifetime risk is now 2%-- I'm 3Xs less likely than an "average" woman to develop BC & with my implants it will be glaringly obvious should a lump/tumor appear. It was the right decision for me.

Hope this helps & let me know if you have questions-- I'm happy to answer any/all that you have.

bruinjamie21

nicreit thank you for sharing this with me. It is a huge help to know someone out there my exact age in my exact situation made that choice and doesn’t regret it. A lot to think about. This week made me realize I cant see myself dealing with the uncertainties of MRIs and biopsies for my whole life if there’s another opt

Martha615

Hi,

Have you looked into doing a gene panel that includes more than BRCA 1/2? I think you'd find more support for risk-reducing surgery if you carried a gene that meant you have an elevated chance of breast cancer.

As to the answer to your question, yes there are people who get BMx even without the BRCA1/2 gene. Tons of them. They may carry another mutation or have a family history and personal experience that influences their decision. The problem may be getting your insurance to agree.

I totally understand your dilemma. If you look in this same forum you'll see a very recent post of mine about the same thing.

Good luck to you!

bruinjamie21

Thank you so much. I will look into that for sure. I need to see which genes my mom actually WAS tested for as well. Thanks.

Lindzfay

I had a mastectomy on my right side due to early stage cancer but then did the other 6 weeks later due to a Chek2 genetic mutation. Another factor for me was being diagnosed young, age 40, and the risk of another cancer going forward. I didn’t want to be worried constantly.

Spookiesmom

I was adopted so don’t know family history. Dx 7 years ago, had bmx. Surgeon didn’t hassle me much about that, thought all was good. Tumor markers in range. No mamos! Yay! Life was good, until January.

It’s back in the nodes on the other side. Had surgery last week to get it out.

All this to say there are no guarantees it won’t/can’t come back.

Castigame

Spookiesmom,

Sending you prayers and hugs.

Ja9831

I too am currently faced with making the decision on doing PDMX. My mom died of bc and grandmother had it in her early years. I am BRCA negative. I was just diagnosed with LCIS. Which I would be on every 6 mth watch with meds forever. That doesn’t sit well with me at all. I work for 4 OBGYN’s all but one said do the PDMX and my moms oncologist said to as well. It’s been my decision since this has started with me last year. But my question is. How important is a second opinion? I love my bs, im meeting with her reconstructive surgeon next week. My one boss that doesn’t agree with my decision said it’s always best to get a second opinion.

farmerlucy

Oh crap Spookiesmom. I’m so sorry to hear that. How the heck does it get in the nodes with no boobs. Aargh. Hugs to you friend.

Ja9831- You’ll know in your heart what the right decision is for you. Listen to that.

MaryScout

Hi All,

Thanks for starting this thread. So I have been diagnosed with ADH, and I, too, just couldn't wrap my head around all of the future tests, worries, and drugs. I've had cervical cancer and 3 melanomas, so I feel at least somewhat versed in dealing with cancer. I'm not as young as you all -- I'm 54 -- but I feel young! (or at least immature ).

So... I'm scheduled for PBMX w/ diep in the NOLA breast center on May 14. I've talked with so many friends/survivors, and none of them have tried to dissuade me at all. I know that my decision isn't for everyone, but I believe for me it's the right one. For other women who feel similarly, I understand!

All of this decision-time moved very quickly (for which I am grateful). I've finally now just finished dealing with the insurance approval (Aetna, PPO) and with the pre-op tests (and travel). If anyone thinking about it ever wants to talk, I'm happy to do it!

Best to everyone making this tough choice. It's great having a supportive community who cheers us on no matter what route we decide to take!

Warmly,

Mary

Irishlove

Hi everyone. Tuesday is my surgery for PMX. I had left side removed back in Feb. and needed to wait to see how recovey went before deciding this. I have MS and did have a flare. A bit better, but still dealing with bowel issues. We have our home on the market and today we rec'd an offer that sounds great. What terrible timing. Our home is in a rural area, so if we don't accept it may be a very long wait for another buyer. Love my home, love my room and front porch. But love the grandbaby 500 miles away even more.

I hope everyone heals well. Never did ask my stats, but considering I'm number 6 in the family, I'd say outrageously high. Besides I point blank asked efficacy ratings, Tamoxifen 30 percent, A.I.'s 50 percent, PMX 90 percent. No nasty side effects and with MS and other health issues, those drugs are not a good match.

Mavericksmom

Interesting thread! I had IDC in 2003, treated with lumpectomy, re-excision, chemo and radiation. I had a diagnosis of ILC in December 2018, same breast and was refused a BMX! I was told this cancer hospital in Philadelphia doesn't remove healthy breasts! I know they do for BRCA patients, apparently my life, my fears were not worthy?

I'm so angry that the choice was not offered to me. Why do they tell women to do everything to prevent a recurrence yet they won't do the same?

I'm so glad others were given the choice. I'm older now too. So far my mom, my two sisters and I all had breast cancer! I know it will come back again, the only question is when. If I get it in my right breast, the hospital is going to hear from me and NO, I won't have another surgery there

kber

I tested positive for CHEK2 and am considering a BMX rather than a lumpectomy.  But I have some more research to do.

Rshep9101

I was diagnosed at 30 with ALH over 8 years ago and have been in the MRI +3D mammo + Dr visit club for awhile. Today I had my 5th biopsy(2 core needles, 1 stereo tactic, and 2 Excisional surgeries) I am exhausted emotionally. Everytime they find something and we have to go through all this we talk about BMX. I have a lifetime risk of 47% but was BRCA negative. In one week I have had an MRI, mammo, ultrasound, core needle biopsy, clip placement, and another mammo. I just had a 3cm tumor removed in November so we weren't expecting more findings so soon. I am scared of losing all feeling in my breasts after the BMX. can anyone who has made this difficult choice speak about that...

MaryScout

Hi Rebekah,

I was diagnosed with ADH (and small amounts of ALH) about a month and a half ago. I guess because I've survived cancer before (cervical and melanoma), I pretty much knew right out of the gate that I didn't want to do the high-vigilance approach. I didn't want the multiple biopsies, the waiting, the anxiety, etc. They were also suggesting drugs (e.g., tamoxifen), and I didn't want to do that either. I travel a lot in my job and for pleasure, and a lot of that travel is out of the country. I really didn't want to change all that either.

So.... I got hard to work and scheduled a PBMX with diep flap at the Center for Restorative Breast in New Orleans. It's been one week and a day since I had it done, and we returned back home (in PA) yesterday. I can honestly say that this has been one of the best decisions of my life. If I wouldn't have done it, today would have been the day I would have gone in for my first excisional biopsy due to the ADH. Instead, I'm having a cup of coffee in my house, enjoying life, healing really well, and seeing this whole thing as a bad dream that's over.

I know what I did was super pro-active and what some might characterize as extreme. The one thing I really realize is that we are all different -- in our emotions, in our framing of this disease, in how we want to approach it, in how we heal, in what is important, etc. And every difference is one that I respect and appreciate. So this is my "difference," and it sounded like it might be relevant to your question. If you are thinking of PBMX with reconstruction, I cannot recommend the practice in NOLA highly enough. They are truly top-notch. I love my new foobs -- because it is a diep, they are my own tissue -- soft, warm, and permanent. They are numb, but some of the feeling is starting to return. I know it will never get to wherever it was previously, but that it ok. I would go this route again without question.

If you want to talk at all, please feel free to PM me. Would be happy to do it.

Yours,

Mary

Mavericksmom

Wow Mary, I’m impressed! I had my mastectomy with DIEP reconstruction at a hospital about an hour from my home and got tired of all the running back and forth for follow up visits. How do you deal with follow up appointments?

Also, my fake breast is not numb, I have feeling, even in the tissue where my nipple was. I expected it to be numb.

Wishing you well as you recover

trina21

were you tested for the NBN gene? Most doctors have no clue about this gene, it was discovered only 3 years ag

footballmomma

Are the end reconstruction results better if you get the prophylactic with reconstruction instead of waiting to be diagnosed and doing it all then?

MaryScout

Hi Footballmom,

I did a prophylactic DIEP, nipple sparing, so I can't really speak from the perspective of waiting until diagnosed. I had ADH and ALH, and I really didn't want the stress of all of the monitoring in my future. I have met numerous women who did DIEP after diagnosis, and they seem happy with it. I have also met women who had implants after diagnosis, and many of them seem to struggle with that, and particularly after radiation. Again, though, those ladies should chime in because my was prophylactic.

I couldn't be happier with my outcome. I'm now 6 weeks out from surgery and my recovery has been great. I'm 54 years old, but was pretty active with exercise prior to surgery, so I think that helped. PM me if you want to talk more.

Yours,

Mary

rjks

@ footballmom: Ithink so, yes. If you're diagnosed with bc, western doctors seem to automatically have you go through radiation and chemo, which weaken the skin. Reconstruction is stressful on the body, so you want to be healthy when going through it to protect against necrosis. That means you may have to wait longer to undergo reconstruction after cancer *treatment* (which seriously weakens your immune system). Also, a lumpectomy before reconstruction may require the surgeon to reconstruct an area that is not as “clean" as one where a simple mastectomy has been performed. (My plastic surgeon ordered the surgical oncologist to touch me as little as possible during her portion of the dmx (plastics place expanders and sutures).)

I had pdmx 10/18, reconstruction 3/19, upcoming revision 8/19. This is what I picked up from the plastic surgeon, techs, and my own experiences going through the process.

Mavericksmom

Mary, so happy to hear you are doing so well! Woohoo!!!! You but a big smile on my face!

I’m expecting a confrontation with my BS next week.

I’m telling him upfront, his denial of my prophylactic mastectomy caused me a lot of stress but also a lot of contemplation.

His denial of removing my right breast was supposedly because my breast was healthy and they won’t remove a healthy breast. Well I am telling him he can’t have it both ways. If I am at such a low risk of getting cancer in my right breast then I am refusing all imaging of that breast. I will only go for a mammogram or US if I feel a lump or consistent pain. I’m also telling him I will NEVER, under any circumstance have radiation treatment if I develop a cancer. Been there, done that and was burned badly!

I was considering a prophylactic mastectomy next summer by another doctor, at a different facility, but have decided against that. I simply can’t justify having an elective surgery because I have had 16 surgeries and each one took a little life out of me. I have horrible veins and have had way too much anesthesia and radiation.

I won’t even have a mammogram if he says he feels something. I MUST feel it! I am the reason my ILC was found. Had I not spoken up about the consistent pain I felt in that area, the mammogram would have been read as normal and I would be sitting here with cancer, all the while thinking I am fine! Mammograms do not provide me with any confidence whatsoever!

I get literally il from stress before each doctor visit and I get stressed to the max for weeks before each test. This robs me of joy in my life. I want to forget I had cancer (most of the time) and move forward. I can do this and still see my MO, but I see no point in seeing him again. I am on doctor overload right now and need to cut doctor visits way back. All the cancer doctors seem to think they are the only doctors we see, that breast cancer is our only (#1) issue and for me and many others, it isn’t!

It all comes down to quality of life! 😊