Emotional Impact of Screening

RubyRed3

Hi Everyone!! I am new here and just want to say how helpful this site has been to me over the past 5 months!! A little background on me..on my father's side of the family there is a BRCA2 mutation. I was tested 6 years ago and thankfully tested negative. Since then I have found and had a biopsy on 4 lumps over a 5 year time frame. This then prompted further genetic testing for all known BC mutations. I was found to have a VUS on the ATM gene. I have also had one biopsy with usual ductle hyperplasia and I took ortho novum for about 13 years. One clinic suggested a preventative mastectomy and another said that is totally unnecessary. So for now I have chosen surveillance but I am so stressed by it. How do you not walk around stressed all the time? I keep thinking maybe I have cancer forming right now. Will the next test be "the one". I'm 34 years old with a wonderful husband and a 5 year old son. My mom died 5 years ago from brain cancer. I just can't stop worrying that I'm going to end up like her. Leaving my son and husband. But a mastectomy sounds scary too. How do you cope?

MTwoman

RubyRed3, I think each woman is different in what helps her cope. We all have different personal risk profiles, and different risk tolerance/aversion. We each have to decide what we are willing to do for risk reduction, and which risks we are ok with accepting. Let's face it, you can't live a risk free existence, it isn't possible. Your increased monitoring has made you more aware of your risks than many women. You can let that be something that gives you anxiety, or a sense of peace.

Deciding what I was willing to do, then doing that and letting go of the things that I can't control, or wasn't willing to do was what worked for me. Going through treatment, I became acutely aware that each day was a gift. Some days I'm more in touch with that than others. I would encourage you to think about what you need to do to have peace of mind, and then do that so you can enjoy your wonderful husband and son! ((hugs))

RubyRed3

thank you so much MTwomen for your words. The thing that's the toughest for me is I want to want to do a preventative mastectomy. I don't want to walk around with worry but surgery scares me. People have phobias....mine is anesthesia and surgery risks. I have always been so scared of the thought of surgery. I also worry, will I be happy with my decision after the fact if I do have a mastectomy. It can all be overwhelming at times! I almost feel paralyzed. I know me, and screening will take its toll but surgery is a huge fear of mine. I'm thankful to have the option but so stuck at to what to do

ravzari

I had a preventative mastectomy due to a strong family history of cancer.

Didn't bother with reconstruction as, for me, my breasts were never a 'defining' feature or something I was particularly attached to due to a lifetime of fibrocystic breast disease that made them intensely painful to have. I knew I didn't want the extra trauma of flap recon, and I didn't like the healing process and multiple surgeries of those or of tissue expanders to implants either.

I don't have kids and don't ever plan on having kids so being able to breastfeed wasn't a concern I had either.

The worst parts of my surgery recovery were:

- The drains. They were annoying and uncomfortable, but not painful. Just annoying.

- Having to limit my activity (including the 'no lifting or reaching over your head' ones) and range of motion for 6-8 weeks; I'm fairly active and that part was the hardest. My husband helped out a lot, but I still hated having to ask him to do things for me.

Aside from that, recovery for me from the BMX was pretty painless, I only used the painkillers they gave me to sleep, and I have never once regretted it or regretted choosing to remain flat; it's nice to have them out of the way and gone along with cutting my risk of developing breast cancer down to 'normal population' levels.

I can 100% say I haven't regretted any of it and only wish I'd done it back in my 20s to avoid all the 6 month followup exams and whatnot.

LisaAlissa

You may also want to check out the Facing Our Risk of Cancer Empowered ("Force") web site. There is a lot of discussion of how to manage higher risk/genetic risk.

HTH,

LisaAlissa

mustlovepoodles

personally, I did not have my BMX until I knew I was really ready for it. Once you go there, there's no going back. My suggestion is that you continue with surveillance at this time. If at some point you decide that you really want to have your breast removed, then you can do it. There's no rush to surgery.

RubyRed3

thank you mustlovepoodles, it's nice for me to hear that. I've almost had in my head that I should do the mastectomy but I'm truthfully just not ready. And thank you LisaAlissa I'll take a look at the FORCE site for that info.

ChiSandy

And Ruby, bear in mind that brain and breast cancers are two very different things—all they have in common is that they presumably start with a normal cell suddenly refusing to die but instead continuing to divide until a mass forms. There are more kinds of cancers even within a given organ (breast or brain) than there are kinds of cardiovascular or pulmonary disease. It was awful to have lost your mother so young—but her brain tumor had and has no bearing on whether you will develop breast cancer (cancer is not something one “gets" or “catches" but rather develops from within) and if you do, what type or how aggressive.

For me, the boat sailed on my breasts “doing their jobs" after I weaned my son decades ago. I am not defined by them. But I also know enough about major surgery and its risks and discomforts that I am not about to remove them unless there's more than a very slight chance that they may kill me. Doctors no longer do tonsillectomies & adenoidectomies as childhood “rites of passage" to prevent them from getting infected; and even an infected appendix is just as likely to be treated medically these days as it it is to be removed “lest it rupture" and cause peritonitis. Neither are hysterectomies or oophorectomies performed on those of us past reproductive age just because we don't need them and they might theoretically develop malignancies. There has to be more than mere speculation—absent a genetic mutation that makes reproductive and aggressive breast cancers likely to develop, my innards (except for my appendix, tonsils, and gallbladder, which flew the coop back in the day) are staying put. And I am not about to put myself through surgery unless it’s to improve the quality of my life (e.g., replacing my cataract-ridden lenses with plastic ones) or save it, rather than impair it. (Therefore, no cosmetic surgery, breast lift/reduction, bunionectomy, etc.).

I find that for me, the every-6-months mammograms and exams have been less traumatic than would be getting an irreversible questionably-prophylactic mastectomy (I tested negative for all known genetic mutations and my IDC was caught early and not aggressive) and all the complications that go with it, whether or not having reconstruction or staying flat. But your mileage may vary—I’m 66, with less time remaining in my life for any more of my body parts to “turn traitor."

RubyRed3

thank you ChiSandy for your kind words. All of the women on this site are so strong it amazes me every post I read. Losing my mom to brain cancer was and is the worst thing that has ever happened to me which makes it hard not to let my mind wander when I think of my own breast cancer risks. But you are right they are very different diseases and I can't let her outcome overshadow this decision I have in a very different situation. It's hard not to stress though. Although as all of you have said, it's about doing my best and not letting the rest get to me. This is all a learning process to say the least and the last 5 months have been full of all sorts of emotions/anxiety and stress but through the help of your words and time I'll sort this all out. But for now I just can't imagine a major surgery and it's nice to hear that some of you have the same feelings. The hardest part of this is feeling alone. Especially at 34 when none of my friends have any experience with these sorts of things or facing any decisions that can relate.