Trying to decide about prophylactic bilateral mastectomy

Kristin1021

As part of my breast cancer follow up, my oncologist had me do genetic testing. I don’t have BRCA mutations, but I tested positive for MSH6 mutation, which is one of the genes associated with Lynch syndrome and increased risk of colon, uterine, ovarian cancers among others. I am having a hysterectomy and oophorectomy in the spring, but recently came across a 2018 study that associates this mutation with a 31% increased risk for breast cancer. The study was the first to look at each of the Lynch genes individually for their association with breast cancer, but it was a small study with some limitations and therefore the body of evidence is suggestive but not strong at this point.

I have consulted with my surgeon and a plastic surgeon about prophylactic bilateral mastectomy for risk reduction. Both advised it's my decision, although they also both agreed the partial mastectomy I had for the IDC and current adjuvant treatment plan are appropriate course of action.

When I was initially diagnosed with stage I DCIS that turned out to be stage IIIa IDC, I chose partial mastectomy because I could not bear the idea of numbness in my breast! I also have a close relative that had a lot of scarring, pain and multiple surgeries following her mastectomy and reconstruction. However, I am really concerned about the increased risk associated with MSH6. I haven’t discussed with my oncologist yet, but plan to when I see her next week.

I am really interested in knowing what others who have had bilateral mastectomy feel about their decision, what was important to them in their choice, and what their thoughts are on the numbness. Is it distractingly uncomfortable, get in the way of daily activities, constant? I know living is the most important thing, but the numbness has been the major issue for me as I am thinking about this decision. I was told it feels like scratching your leg when it’s fallen asleep. Thanks in advance for any and all input!

Spookiesmom

I had bmx 7 years ago, no recon. I had very little pain from the surgery, the drains were a huge pain in the rear. I told my BS I wanted them gone, didn’t want to do this again. But cancer can be sneaky, and came back in the lymph nodes on the other side this year.

I am still flat, no problems there. I do get called sir sometimes, don’t ever wear foobs. I don’t notice numbness, jut go about my day normally.

It’s a tough decision, one only you can make and be comfortable with.

OnTarget

I had a BMX in May this year and the exchange in Nov. At this point in time, the numbness doesn't really bother me too much. I can feel if they are impacted- I assume it is feeling in my muscles under them, but I can't feel most of the breast skin.

It is a bummer to have no nipples and no sensation, but it isn't nearly as important to me as my health. I wanted to be aggressive with my cancer, and I'm very happy with my choice so far.

My arms need to be stretched frequently, and I'm not sure if it is permanent yet at this point.

My breasts get cold if the room is cold, but I don't notice unless I touch them. Not a big deal for me.

Mostly minor issues really.

Kristin1021

thank you for sharing this with me. I have a coworker who decided against reconstruction over 15 years ago and she is also really happy with her decision. It’s another option for me to consider.

Kristin1021

thank OnTarget. I agree health is the most important thing and glad to hear you are happy with your decision. I appreciate your input.

Yogatyme

I had BMX in Aug despite having small tumor and stage 1A b/c I have BRCA1 and it puts recurrence risk at 85% for both breasts. Once I recovered, my activity level went back to normal with no problems. I do have numbness and was told I probably always will. I didn’t have reconstruction, so I can’t speak to that. I have no regrets about either decision, but I wonder what I would have decided if I was younger. I can appreciate your concerns about numbness and i think you are wise to be asking these questions.I hope you’re able to come to a good decision for yourself.

ProudMom_Wife

I opted for BMX. No regrets at all... Zero, None, Nada. Even though I was BRCA negative too many of my relatives have one type of cancer or another (breast, ovarian, skin, throat, etc...) that I just did not want to deal with it anymore. Of the relatives with breast cancer, only one of them has not had a recurrence. All others had it recur either in the same breast or the other breast or had a new/different type in the other breast. I know I still have a risk of a distant recurrence, or of a recurrence in the teeny tiny amount of breast tissue which might not have been removed. But it has brought me piece of mind.

I did reconstruct. My silver lining is that I downsized from a "D" to a "A/B" cup. Have not put on a bra in over 6 years and am loving it!!! I really hated wearing bras. It is so nice to go for a bike ride, dancing, running, hiking, etc... and not be giggling all over the place. I have saline implants, so I am going to be needing to replace them in a few years. Do not know if I will deconstruct or do another round with saline implants. Depends on where I am in life at that time.

The numbness did bother me at first, missed the sensations and feeling. However as time has passed that does not bother me anymore. Sometimes the implants shift on me while I am sleeping because I sleep on my sides now (not a back sleeper at all). The main reason why I might deconstruct is because I really miss sleeping on my stomach which is my comfortable sleeping position. Oh, I do have a difficult time finding a bathing suit top which fits well and stays put, but my modesty is almost non-existent now and I will go topless when swimming or wear a rash guard. If I deconstruct I have thought about getting tattoos, and will probably go topless even more to show them off

MaryScout

I did a preventative BMX with DIEP reconstruction in May this year. I love my results!! I went to The Center for Restorative Breast Surgery in New Orleans: https://www.breastcenter.com/. They were absolutely fantastic.

Kristin1021

Thanks everyone for sharing your decisions and how you feel 😊 it’s so helpful to hear what other women have experienced - it’s invaluable really.

LongArms

I’m MSH6 positive. I had BMX with direct implants for DCIS in left breast, then found out about the MSH6 Dx. The hardest decision for me was to have a TLH/BSO (total hysterectomy). I’m 42. In 2019, I had breast, uterus, and ovaries removed, so I’m really looking forward to 2020. For all these surgeries, I have not had lasting complications. I did have numbness and extreme nerve pain down my left arm for 3 months, but now it is completely fine. I believe that being extremely active has helped me recover quickly. I have no regrets

Moderators

LongArms, welcome to the BCO community! Although we are sorry that your cancer brought you here, we're glad you've found us and decided to post. Hope that you will stay active and continue to share your experiences and questions with our members. Please keep us posted on how you're doing, and let us know if we, Mods can be of any help. We're here for you!

Best,

The Mods

tmac22

MaryScout, I'm very glad to hear! I'm getting this done next month and of course am getting a little nervous as it gets closer. I know I'm doing the right thing for me and am not second guessing at all, just getting nervous! Any tips??

toomanyhannahs

I had a BMX and opted not have reconstruction. Don’t miss them at all. They were large and heavy and wearing a bra was a royal pain. My clothes hang better than ever and most people are not even aware I am breast-less. I certainly don’t feel less of a woman. My feminine side is safely intact. The 10th circuit court just ruled that if men can go topless so can women. I my rotator cuff is completely detached, it’s now legal in 6 states for women to bare their breasts (which I don’t have) and it’s darned near impossible to get a wet bathing suit off with one arm out of commission. So...I negotiated swimming topless at our city rec center. It’s time to take a stand for ourselves as women who come in all different shapes and sizes, with or without breasts. It’s great to be comfortable in my own skin

flyswatter

Hello all,

I just wanted to pass on to all of you women how incredibly inspiring you all are, and that I consider you true fighters that really move me. It's amazing to see the level of significant support that exists in these forums.

I feel out place posting here, because I'm really looking for information for my wife.

There's a long story that could be told here, but in general, my wife has been diagnosed as "high risk" for quite some time, similar to many of you. She never knew her mother or anyone on her mother's side of the family, so from a genetic perspective, we have nothing to go on there. On her father's side, every woman in her family (four of them) has been diagnosed with breast cancer.

We just completed a round of genetic testing, where although she tested negative for the BRCA mutation, she was categorized as high risk. After months of discussion and prayers, she's decided to pursue a preventative mastectomy. I fully support her, but need some assistance from others that have been through this.

I just retired from active duty, and our insurance is TRICARE Prime. If any of you have knowledge on how to navigate the details of a preventative mastectomy with TRICARE, I would absolutely appreciate some help, or a point in the right direction. I looked through other posts and forums, but didn't find anything that fit my particular question, so I hope you don't mind me starting my questions here.

You guys all inspire me, and regardless of the responses I get, just know that I wish you all the best, and hope I'm not offending those of you who have dealt with cancer. We're pursuing a path that many people just didn't have a chance to consider. Thank you all in advance....

Moderators

Dear flyswatter,

Welcome to the BCO community. We are sorry for your wife's situation and glad that you reached out to ask questions of our members. If you don't get any timely responses, you may want to use the search function in the blue tool bar and search the word Tricare. Lots of posts come up around Tricare and while they may not be exactly with respect to prophylactic mastectomy you may find others with whom you can connect via private message. Keep us posted on what you learn and let us know if we can be of more help.

The Mods

MinusTwo

flyswatter - sorry I don't know anything about TriCare, but wanted to let you know we are all here for your wife - AND for you, as you job is hard too.

MaryScout

Hi Tmac22,

Sorry to be late in responding! I think the main tip is to just follow the doctor's orders. Take it slow and steady. My recovery was really pretty great. The first couple of days were tough, and the drains are a pain. But I was pretty "normal" after about 4 weeks. By 8 weeks I went on a scuba trip! I just did the phase 2 in November, and I can honestly say that my breasts and body look WAY better than they did prior to the surgery. Love it!! Feel free to DM me if you want to talk more about the process!

Yours,

Mary

flyswatter

Thanks Minus Two and Mary!

I'm incredibly thankful for the responses and support from you both!

I suppose my question could have been phrased a bit better.

There seems to be a real struggle to convince my wife's doctor that the preventative mastectomy is something she should do. Although she has been diagnosed with very dense breasts, TRICARE, and our hospital refuse to refer her out in to the community for health care (we still go to a military hospital) for a 3D mammogram. Our hospital doesn't currently have that capability.

Here's what TRICARE says:

"Bilateral prophylactic mastectomies are covered for patients with an increased risk of developing breast cancer who have fibronodular, dense breasts which are mammographically and/or clinically difficult to evaluate, and one or more of the following:

atypical hyperplasia of lobular or ductal origin confirmed on biopsy

history of breast cancer in multiple first-degree relatives*

history of breast or ovarian cancer, also known as Family Cancer Syndrome, in multiple successive generations of family members*"

We seem to be in this place where we have to convince the doctor that a prophylactic mastectomy is the right thing to do. We even have to argue for a 3D mammogram, which we still can't get the doctor to agree to. It seems like the fact that my wife doesn't know her mother, or her mother's side of the family, (particularly their medical history or history of breast cancer) seems to be working against us. This is all despite a medical designation as high risk, based on prevalence of breast cancer on her father's side of the family, and genetic testing.

I wasn't sure if anyone else had to argue and try to convince their doctor of things like this, or if it was just something TRICARE was difficult about

Thanks to all of you for taking the time to listen and respond. I'm so thankful for the support and for this resource.

Yogatyme

flyswatter, if there is a Tricare office at your military hospital, go to talk with a patient representative and take all the information with you. Making a case in person sometimes makes a difference. Also, if you can provide documentation re: risk, it will help. Any recommendation by medical providers can also help. I was a provider in the Tricare East region and I know they have patient care reps available by phone, but face to face is still best. As a provider, when things were wonky w Tricare, a call to my representatives offices always helped, so that is another avenue to explore.Good luck.

Moxie32

Sorry you and your wife are going through this. If you are retired and in Tricare Prime, your wife should be able to see anyone in the network. Since you are in WA, I assume you are in the Tricare West Healthnet network.

I was under the assumption that retirees can go to MTFs on a space available basis. I don’t understand why you are restricted to go only there.

I would definitely talk to someone at Tricare about your options as a retiree. Or check out the Tricare West website and see what your primary care options are. It would put you back at square one but may give you more options.

flyswatter

Yogatyme....

Thanks for the quick and solid recommendation. We'll see what we can come up with regarding the closest TRICARE Patient Rep Office. I truly appreciate the help.

flyswatter

Moxie32,

Thanks so much for your reply

It's true that retirees have access to the Military Treatment Facilities on a space available basis, and that's the exact situation we found ourselves in when I retired last year. We've been going to this hospital forever. My son was born in that hospital, its close, and being patients at the MTF means zero co-pay. Our current situation has me rethinking that though. It may be that we need to divorce ourselves from the military hospital, and utilize the U.S. Family Health plan so that we can swap to a provider out in the community. Soonest we'll be able to do that is December 2020. Thanks again!

MinusTwo

flyswatter - just to recap - Has she had the standard mammogram? If so, why not push to go directly to ultrasound from there? You'll get a good definitive picture that way. If she's diagnosed even with DCIS, it will make advocating for further treatment easier.

Moxie32

We had the USFHP in Maine and it was great. Not available in CO where we live now - so Tricare Prime.

An aside. You may want to look into what happens with regard to the MTF once you reach Medicare age. I think if you are enrolled with USFHP before you turn 65, you can continue with them. If not, you go to Tricare for Life as your supplement to Medicare.