How I might be a guinea pig

Thanks to the protocol my oncologist is proposing.  No, of course, she does not see it that way, but given my past history…where, oh, where to start?

Well, with semi-good news:  radiation is still on the table and not definite for the time being.  I am hugely undecided here, but have to say I am leaning towards not having it, some days more heavily than others. It turns out that there are two margins of concern (one was previously not mentioned as being an issue). One of the areas could still possibly have extra excision.  The other area, a medial margin, has nothing left to be excised (the bad news, apparently).  The good news?  They are not concerned about the invasive cancer on the medial margin, just the DCIS.  

Since the DCIS can only be found in the ducts and I am (insert small cry, tears miraculously reappear) now duct-less on the right side, one would think there would be less of a worry.  Unfortunately, it still puts me in the gray area, as recurrences can happen and of course, the doctors want to err on the side of caution.  Too bad the doctors and I are in differing camps regarding the definition of "erring on the side of caution."  

The really bad news?  The oncologist is ready to go full-force with the Tamoxifen.  I have zero to no interest in taking it.  I know it can be like taking a vitamin, however, I would not take a vitamin without researching it thoroughly.  Thus I researched Tamoxifen, then really, really thought about my medical history and became very afraid. 

You see, if you recall, I made mention somewhere in the past of episodes of Intrahepatic Cholestasis of the Pregnancy.  This is some bad-you-know-what stuff that you really don't want while you are pregnant. I lucked out enough to not have it just once, but twice!  The truly interesting piece is that I did NOT have it while pregnant with Nicholas.  Now Peter and I have our own theory as to why it didn't happen, but theories aside, cholestasis and liver damage (in general) can both be side effects of guess what? Tamoxifen.

So if I appear to be a bit hesitant to swallow that pill, it's with good reason.  ICP is not a walk in the park, but at least it is 'curable' in that it disappears once one gives birth.  As far as I can tell, Cholestasis (not of the prenatal) variety does not.  One might then be inclined to think, "Well, at least you won't have a recurrence of breast cancer!" 

Maybe.  Nothing I have read/heard from my doctors says I won't have a recurrence, just that there is a lower chance of a recurrence (and not a huge one in my opinion).  Given my stage, my Oncotype and all other factors (and let's not forget my natural reticence to incorporate this type of drug into my protocol), to me it is too risky.  I am quite sure that some may see my hesitance as unwise. However, I am one of those crazy people who sees this from a different perspective.  

I don't see this as a time to attack with the big guns, and thus far, the data seems to be indicating that 'less is more'.  Yes, I went ahead with the surgery, however that was to remove the cancer.  It was invasive, and there is* risk, but I did not see anything inherently toxic.  I still regret feeling that it was necessary, but it was not as though they took out the cancer and put something equally as bad back in. While Tamoxifen may have its benefits, it is far from something one would naturally take on a regular basis.  The side effects are known and numerous (and include cancer).  There are those who have taken it and still had a recurrence.  There are those who have NOT taken it and had no recurrence.  Where does that leave me?

Completely and utterly undecided.  My oncologist feels it is necessary, Peter is less hesitant about me taking it after talking with her today, and I still want nothing to do with it.  As it is now, I have a grace period and have indicated I will not even consider taking it prior to January 1st.  If I end up doing radiation (for whatever truly compelling reason), then I will defer beginning the Tamoxifen until that is completed.

Now there is one small chance that my ICP was actually related to gallbladder issues and I do not have the enzymatic defect that causes cholestasis.  I only just learned of the possibility this evening and it is a very small to non-existant chance.  If it was truly a gallbladder** problem (blockage of the ducts with gallstones) vs. a liver problem, then there is a better chance my worries are unfounded and I will give the medicine a go for a trial period.  Isn't that incredibly reasonable of me?

In the meantime, can I just say how I am so tired of decision-making and feeling like everything hinges on me making the "right" decision?  Unfortunately, no one knows for sure which decision is best and it always seems to me to be a 'lesser of two evils' scenario.  Hard to believe fewer than two months ago, my biggest worry was about the bid list and our choices.   Oh, how I yearn for those days…

*I typed "is" because having a mastectomy carries permanent risk factors.  I write that not to frighten anyone, just to make he/she well aware.  In fact, the risk factors are the reason I (finally!) obtained a referral to a physical therapist.  I don't think I am having any problems at this time, but want to be 100% sure I am on track as far as recovery goes.  Despite my breast surgeon's insistance I would be fine without it, the oncologist thought my idea of an overall assessment to be a very good one (points for her and sort of evens out the Tamox issue a teeny bit) and immediately typed up a scrip.  

** Generally, having one's gallbladder removed does not ensure that one will not have ICP. However, apparently there are cases where one could seem to have ICP, but instead has a version caused by gall stones blocking the bile ducts.  Since it was assumed that I would have ICP with each pregnancy (and most women still have ICP even with cholystectomy), there was never any testing done for the liver defect…hmm…