So, this is where I’m at right now. About to make what feels like the most crucial, life altering decisions of my life–not that I haven’t already been here before multiple times. This time it’s different–So much more intense, and close! The decisions seem more brutal and overwhelming even though I’ve known of these possible scenarios for some time.
I’m still currently not a candidate for immediate reconstruction and my doc is not content on waiting any longer, saying that radiation several months from now won’t be the same as doing it right after chemo. I know she’s right. So here are my choices: (1) do bimx now and delay reconstruction [With this I’m faced with more scarring, more surgeries and giving up a huge, physical part of my sexuality as a woman, at least for a time in delaying reconstruction (I already have a hideous scar from my panc surgery that still needs to be fixed. Can I also conquer the part of me that still sees my identity as a woman wrapped up in my having breasts?); however, I’d be gaining the most benefit in combating an exceptionally high recurrence rate of a very aggressive, hard to treat cancer that so far, in my case, they caught in its earliest stage with no lymph node involvement]; or, (2) I can still take the easier route of radiation knowing I’d be delaying bimx/recon even longer and still playing with the risk of recurrence, secondary or contralateral breast cancer (highest rate within 3 yrs).
No-brainer, right? Currently, and quite bizarrely, studies show mastectomy vs. lumpectomy with radiation to have the same survival rates. The latest studies showing lumpectomy with radiation may even be a safer bet. Again, though, I’m in the “you got really genetically screwed” category so not sure how much of these studies are based on BRCA1 mutants. As Nurse Pat at TxOnc told me Thursday, “you don’t have an old person’s cancer, you have a young person’s cancer, which is more aggressive.”
Before you judge or say, “I know what I’d do,” just remember you are not walking in my shoes! Sometimes having to make the choice seems harder than not, even though you know that having the choice is certainly better.
Can my psyche handle the decisions I’m faced with, now and after? I don’t know. I just don’t know. A friend stated earlier today, “Whether your psyche can take it won’t matter much if you’re gone.” She’s right; I just have to get in the right headspace about it all. I have to go through the emotions and the continual processing of it all. Its torture I tell you! I have further consults with the RadOnc and my breast surgeon so those will hopefully help in my decision process.
Honestly, every aspect of my life is totally fubar at present and I feel like I’m in system overload and about to seriously shutdown at any minute. You know that saying about God only giving you what you can handle? It’s total crap in my book! One friend brought that exact phrase up to me last year and then said, “God must think you can handle an awful lot.” I hate hearing the phrase now! Sorry, I know I’m being a complete downer in this post, but it’s where I’m at and it all should be captured, not just the upbeat, inspirational stuff.
Please send warm thoughts and wishes as my coming days, weeks, months, and possibly years will be harder than I can conceptualize right now. As if I haven’t already been through the ringer on a consistent basis, well for as long as I can remember now. Where is the light at the end of this dark tunnel? Is there one?
UPDATE: In going back and re-reading additional research articles, doctors opinions and posts from women on the triple-negative foundation forum, those few of us who are BRCA1 with TNBC present with greater risk of recurrence regardless of surgical choice or staging. TNBC is scary, nasty and tricky. It doesn’t play by the rules. “TNBC may harbor more microscopic residual disease” and therefore mastectomy more highly recommended, but not necessarily a safer bet. It is still possible for microscopic cells to travel to distant sites, be found in residual breast tissue or lymph nodes even after treatment for stage 1 diagnosis and/or bilateral mastectomies. Conclusion, double mastectomies could save my life or I could be damned regardless.
I’ve never shied away from learning the hard facts. Information is power, even when it’s difficult to take in. That said, I’ve read some of this before, but I just didn’t want to believe it.
A woman’s choice of what she is most comfortable with still applies. Some women have lumpectomies and never get TNBC or other type breast cancer again and some have double mastectomies at an early stage or even prophylactically (preventive, before cancer) and are then diagnosed as stage 4. As with the rest of life, I guess, it’s all a crapshoot.