Living with uncertainty

Martha615

My question is about how to live with uncertainty, no matter what I do. Some history first:

My family has few women in it but, among them, there is a lot of breast cancer. My mother was dx'ed with IDC at age 52 but she neglected her screening and the tumour was large and easily seen with the naked eye, let alone a mammogram. I suspect she had IDC in her late 40's even. My sister had complicated breasts and opted for a PBMx after a dx of pleomorphic LCIS, age 48. My half-sister (different mother, same father) was dx'ed with TNBC at 55. Both maternal great aunts had bc sometimes in their 50's but I don't know when exactly. The remaining women are my mother's grandmother and my mother's sister, who did not have ever have breast cancer.

My full sister and I are BRCA negative but it isn't a "true negative" as we were the only ones tested (about 10 years ago). Triple negative is highly associated with genetic propensity but I only share 25% of my genes with my half-sister. Unfortunately, I am not aware of any genetic testing on her part.

I'm 55. I have class C dense breasts and lots of fibrocystic breast changes, including a 1.7cm simple cyst that is sometimes annoying. I am awaiting the results of a further panel of genetic tests (Color). My Gail score is 25% lifetime risk. My Tyrer Cruzick score is 35.9% lifetime risk.

As far as I am aware I have no hyperplasia, though I did have a biopsy a few years ago which was just very dense tissue that looked liked a mass on the ultrasound.

I've developed a real phobia about breast cancer. While I don't want to over-estimate my risk or act rashly, I also feel like a sitting duck.

I've been getting annual mammograms and ultrasounds. I do not qualify for annual MRIs. I feel as though I am simply waiting for the diagnosis and that I would be better off taking pro-active measures. I'm not keen on tamoxifen or aromatase inhibitors but would prefer a prophylactic surgery here in the UK, paid for by myself. No particular interest in reconstruction because I don't want further surgeries. While my onco surgeon is willing to do it based on my history and my wish not to go through cancer treatment, I have little (no) support from anyone close to me. They think I'd be putting myself through an unnecessary amputation and that I'm frankly nuts.

I am aware statistically that a surgical solution will be unlikely to significantly extend my life but I am somehow convinced that I will get breast cancer and end up with surgery anyway (plus all the cancer treatment).

Whatever I do I will live with uncertainty. My preference is to take action to prevent the disease but I am not so arrogant that I discount the opinions of those who feel I am over-estimating my risk. It's difficult to take a proactive measure when there is little support from those around you to do so. Even "simple" Mx carries its own risks, as do all surgeries. I am aware of that. I am also aware of mastectomy pain syndrome. A friend of mine suffers from this from only a lumpectomy.

Any thoughts from you very experienced people who know exactly what I'm talking about and have some words of wisdom for me?

Many thanks in advance!

MelissaDallas

Tamoxifen or an AI are showing to be very effective as prophylaxisin high risk women.

I'm not sure what you mean by not “true negative" for BRCA. If you are negative it is not dependent on who else is or isn't as far as I know.

Martha615

Hi Melissa,

Thanks for the reply.

By "true negative" I mean that while I tested negative my mother and half-sister were not tested at all. So, we don't know if their cancers were a result of the gene for which I tested negative or influenced by another gene or just sporadic.

I'm not hugely excited about Tamoxifen or AI either, but I know you are right that they are good options to consider.

Martha615

Melissa, I changed the subject line on this post and moved it. Thank you for your thoughts, though!