crazylife wrote:juliej,
As you know, she frustrates me with her wait and see approach for everything. She said wait and see 3 months ago with 3 potential mets and here we are with 7! I questioned her and she said quality of life is important and there are limited chemo options so she doesn't want to exhaust them right away.
The surgeon said he wants to remove one that could end up problematic if gets any bigger. So that will happen and then she wants to see if others grow before putting him on chemo.
I am beyond annoyed! She has never ordered a PET scan. I don't know what to do. I feel like she has written him off because he is stage IV.
Aaargh! The whole "quality of life" speech drives me crazy when it's given in this way!!!
Clearly she is slowing down treatment and I suspect it's for the reasons you mentioned - a bias against Stage IVs. That was the biggest problem with my local cancer center. To them it was a forgone conclusion that I needed to "enjoy the short time I had left" and not try for more aggressive treatment. But then I did some research and discovered there were docs who had another view -- their view was that oncologists were giving up on too many Stage IVs who might be, dare we say, "curable"! That's when I had a consultation with Dr. K at MSK. From the beginning she never mentioned quality of life (which some might view as a shortcoming, but which I saw as someone willing to fight for my life with me!). It takes an onc with a more aggressive attitude towards Stage IV treatment than yours has shown so far.
It might come to the point where you have to say we have different goals. We want the most proactive and aggressive treatment because he is still strong. We don't want a "wait and see" approach anymore since it has only resulted in the appearance of more mets. When I went to MSK (against the advice of my local onc) I said simply "if I die without even trying a more aggressive approach, I'll always wonder if it would have made a difference." See if being very upfront about what you want moves her at all.
In the meantime, it sounds like he's headed for surgery? It makes sense to remove the large one that might be problematic later. Ask the surgeon if he can take a biopsy of any nodules in the same area while he's there. That would confirm whether or not they are mets. Just ask the surgeon, don't even bother asking the oncologist. The surgeon can inform her if he says it's doable.
The next thing is to find some type of chemo or immunotherapy that prevents any new nodules from forming and gets him to a stable stage. Then an IR doc (ask for a consultation with Dr. Solomon at MSK for this) might be able to RFA the other nodules. This can be done concurrent with chemo so there's no downtime from treatment. That's a one-two punch: chemotherapy to destroy the cancer cells that aren't visible yet and RFA to destroy the existing nodules.
I understand the shock, sadness and anger you feel about the new nodules. Bad news is never easy to hear. I learned how to compartmentalize those feelings, recover, and move forward. There is no choice. There was a period where my life was a puzzle of shifting pieces; we moved and mixed them around until they fit. Finally everything just seemed to go together. My "expiration date" was 2013. Think about it. Stay strong and stay aggressive about his BEST treatment options.
Hope this helps!
Juliej