After the PET/CT scan, I got a call from my surgeon in the early morning, informing me that she had canceled the surgery because the breast cancer had metastasized to my right femur and left ilium. She said she couldn't explain the bone cancer any more, that she was basically just a mechanic, but that we would want to use the breast tumor as a way to check to see if the chemo was working. Then she hung up.
The cancer navigator wasn't in all that day, and none of the other navigators there answered their phones, either. Nobody returned my increasingly frantic messages until late the following morning, when my cancer navigator called to tell me that she had made appointments for a biopsy and blood draw and oncology appointment (see earlier post re this), and told me about the possible reproductive organ involvement.
I talked to the oncologist on the 29th. Not happy with the man himself - to say that he was condescending and uncommunicative and closed off would be an understatement. I won't go into details, except to say that he gave us his two treatment plans for breast cancer and the only information he would give us on side effects is "Your hair will fall out and you will be tired, you will go into immediate menopause." When I asked about my multiple chronic infections and whether these would be a problem with the chemo, he admitted it would, but when I asked if these should be treated first, he simply replied in the negative and would not explain further.
Well, that is NOT an adequate explanation of side effects and expected outcomes, especially with a patient who is asking questions and who specifically asks about Quality of Life vs. Quantity - esp. one whose life expectancy according to said doctor is "1 or 2 years, maybe 3."
And it was only THEN, as he was telling me that he was ordering an MRI study of the spots on my hip & femur, that he let slip that the previous scans were odd, because there didn't seem to be any lymph node involvement at the time of the scan. He also said that keeping the breast tumor (which has now been compromised by the biopsy and is gleefully shedding malignant cells into my system) was more for psychological benefit of patients, because they felt better if they saw that their breast tumor was shrinking.
Now, this is a LITTLE bit important to know, since the surgeon had canceled the surgery without telling me all this, and without asking me about MY preferences on the matter. And that information would have made a difference to my choices of treatment, as having had a separate and independent cancer in the past, I think the lymph node non-involvement was significant to the possibility that these are separate independent cancers rather than metastasized cancer. If none of them had metastasized to that point, then treating them in order to shrink them or changing my body's environment to cut off growth factors could actually significantly prolong my life; if they are metastasized, then I have other cancers landing and growing in all sorts of spots all over my body, and the prognosis is more grim. Instead, I have perhaps lost my window of opportunity to get rid of the tumor before it got to my lymph nodes.
It's not that any of that is a sure thing, it's that they didn't bother to give me the information I could have used in order to make the decision for myself - a decision that is crucial to MY life, not to theirs.
Would THEY want to be treated this way, if they were in my position?