Tuesday, May 26, 2009

Second guessing

I realize second guessing is futile; you can't go back in time. But it is very hard not to when your life is on the line, did I do the right thing(s)?

Chemo timing: Should have started as early as possible with this very aggressive tumor I had. Delayed by 2 surgeries and the onc saying I should have a chemo-free Thanksgiving off-handedly saying delaying 2 weeks wouldn't make a difference. Of course no proof that it wouldn't make a difference.

Right chemo(?): I received the current 'standard treatment' for TNBC: Dose dense 4xAC, 4xtaxol. If one looks on the TNBC foundation pages, this is what women in my position are given. But was it the most effective? Current literature suggests otherwise. See http://www.abstract.asco.org/AbstView_65_35150.html and http://www.breastcancer.org/treatment/chemotherapy/new_research/20090429b.jsp . In summary, for TNBC and/or her2 neg cancers, Adriamycin doesn't do squat unless you have this TOPO2 defect, which is associated primarily with her2 positive cancers. Also the old regimen of cytoxan, methotrexate and 5-fluorouracil (CMF)was more effective for overall survival than the current TAC. Why did they switch? Because for breast cancer in GENERAL, TAC gave better outcomes, but for TNBC specifically, not so much. What might be better? Carboplatin or cis-platin. Numerous papers abound saying its effective in BRAC1 breast cancer (almost all TNBC). Not all TNBC are BRAC1-probably not me (no history and I am 'old'). If one has a large tumor (loosely define as 3 cm or larger depending on your breast size), they sometimes give you chemo before surgery to see a) the chemo is effective b) to shrink the tumor so it won't be such a large portion of your breast. On the TNBC forums, I noticed several women whose tumor didn't shrink with Adriamycin but did once they switched to carboplatin.

Breast 'conservation' or mastectomy: So I was told that overall survival is the same whether I had a mastectomy or lumpectomy + radiation. This is true for BC in general but is it true for TNBC? Who knows? If I had the BRAC1 gene, they for sure would say mastectomy but is my tumor different than the ones that the BRAC1 women get? I sure hope it is!!! Also, my decision was made when I was told I had a small tumor. By the time they got around to removing it, it had doubled in size (linear dimensions which of course mean its volume went up 8-fold) and doubled in number so I needed 2 surgeries. By this delay I went from Stage 1 to Stage 2 with an increased poor prognosis. Also numerous cases I read from my blogging friends along the lines of this: it's a good thing I agreed to a mastectomy because they discovered this additional tumor-sometimes in the opposite breast. But in my favor, hopefully, these hidden tumors were mostly in young women with dense breasts that can hide all sorts of stuff.

I am taking a day off from running but will go to LiveStrong and use different muscles. I still have a numb area in the soles of both feet. Peripheral neuropathy due to Taxol? Running injury?
Early sign of MS or brain tumor?

Still no hot water. Hopefully the installers can fit us in today.


Beth said...

good questions/comments. We have a different 'standard' in Canada (3 x FEC (Fluorouracil, Epirubicin, Cyclophophomide) followed by 3x Docetaxel.Total of 6 treatments, one every 3 weeks.

I'm going for a 5km run tonight!

Holly said...

I have such a hard time with second guessing all these possibilities...I have decided (perhaps naively)to trust that that I had the 'right' treatment for me and to go forward - otherwise I would go completely crazy.....time will tell I guess!

Sara Williams said...

You can't change the past you can change the future. You did everything you could for the RIGHT reasons. My tumour was large (over 3 cm) but I had a successful lumpectomy and although alot of tissue was taken, I can't see much difference! I was guided by my surgeon who was fab, I trusted him with my life and still do. Every ache and pain I have, I think "is it cancer" "is it coming back" its normal thinking when you have gone through what we have gone through.

During these periods of inevitable doubt, try to focus on the good things in your life for which there are many. Trust in yourself, your surgeons and your doctors and love life x

Anonymous said...

Ugh, the second-guessing monster and the what-if monster can getcha sometimes. You've made/you're making the best decisions you can with the information you're armed with at the time. That's all you can do, so you've done it all.

Sara Williams said...

Hi Sue,
I just read your comment on my blog and sadly, no, we don't have hummingbirds here in UK. We have sparrowhawks, herrons, owls, and many others but no HB's. My favourite part of Wales is the Snowdonia ranges which are breathtakingly beautiful. I climbed 3 peaks and would love to do it again. I will try to find some pictures of that expedition and post them on my blog. I am new to this computer game!!!!!! As I type, its morning and the birds are singing all around me, its wonderful x


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