Harlo,
Sorry to hear about your double whammy. A few thoughts:
In cancer, it's just as important to get a 2nd opinion on what treatment (radiation, chemo, biologicals, immunotherapy) in what order, to consider as it is to get a 2nd opinion on ALS diagnosis. So before making any decision, I would do that, as it sounds like you are. I would also expect you to have had additional imaging after the surgery to look for clusters of malignant cells.
Ovarian cancer, of which there is 3 types, is diagnosed
at various stages. I'm sure the surgeon is correct that there is still malignancy in your body, but the question is where, how much and
what type. You mentioned a hysterectomy; I'm presuming that included a bilateral salpingo-oophorectomy?
I would certainly suggest you should be under the care of a gynecologic oncologist who is comfortable with complex comorbidities such as you have and who is tied into if not the same health system where you are receiving ALS care, a better one. This is true even if you opt for palliative care only.
The core question is what chemo (or any other recommended intervention) could achieve in terms of quality and quantity of life, in your case. When you know that, you're in a much better position to make the tradeoffs that it's your place to make.
As for ALS progression, there is little data but I know of several pts, including some here as you have seen, who have had chemo with ALS. Since nutrition is a big thing in minimizing ALS progression, that should be considered in any choice of drug regimen that might cause nausea/vomiting. There isn't much data on how chemo might affect your remaining LMNs directly, if at all.
So the question for the 2nd opinion doc is not just, what do I have, but what if anything will therapy "buy."
Again, I'm sorry for your position and am happy to help however I can, as are we all.
Best,
Laurie
