That is the question.
I think we know the answer.
So far, Frédéric's surgery recovery has gone very well. He looks good despite losing some weight (which he could not afford to lose), and is getting around. Still getting worn out and his body's not back to full speed, but he's progressing nicely.
The scary thing about cancer is it's like a weed. You see a small weed in your lawn and you pull it. You think you got the roots, you hope it didn't seed before. And you wait. Or you bash the lawn with chemicals to kill all potential weeds, killing a lot of good stuff in the process. Sometimes you know it's already full of weeds and you have to go at it. Other times, you wait and see. The trick is to catch it again before it gets out of control.
Did the surgery get it all? Probably. Is probably good enough?
Today we saw his local oncologist. Let me backtrack. I'd said before we'd be consulting with the expert team at Indiana University. These folks are the world reknown experts in testicular cancer. They're pretty incredible - send them a bullet report of all labs/scans/reports, the head guru sends back, within 24 hours, his comments and/or recommendations. (Amazingly fast, though knowing how fast my own inbox used to fill up and emails got buried, I see why he responds immediately). In any case, his recommendation came back : Surveillance instead of chemo.
What is Surveillance?
For 1-2 years:
*Blood tests monthly at first then every two months to look for 3 key markers: AFP, LDH, HCG.
*CT scans every 3 months
After 2 yrs: check ups every 6 months
The type of tumor Frédéric had is generally detectable with these markers. That he had an elevated AFP suggests if the cancer has indeed metastasized, it'll become elevated again (so far it's come down to normal range). CT scan will show any tumors, and will be needed for the kidney cancer follow-up anyway.
There are indeed some risks to relying on surveillance:
1. Non-compliance. Patient feels better after awhile, stops going in for checks...we know that is not going to happen (esp as my former job involved assuring patients complied with treatment for TB, I am no stranger to getting patients to comply ;-))
2. Not catching the metastasis, if there is any, soon enough. However this surveillance schedule should be more than adequate to do so. And if it has metastasized, chemo will then become necessary.
So back to our local oncologist. I had forwarded him the information from the Indiana University team so he could review it. He said his initial suggestion was to be chemo (2x BEP or 6 weeks). He said given the metastasis to the perinodal space, he's at Stage II and this would be the standard recommendation. However, he didn't disagree with the IU team. Also, what the pathologist found was all of 2mm, VERY small, so it's entirely possible the RPLND surgery removed it all. In short, he said though this wasn't necessarily his recommendation, he'd feel comfortable with a decision to rely on surveillance, if that's what Frédéric chose. Now we could get a few more opinions, but it won't matter much. It's not like we'll take the majority rules route.
So together with this oncologist, we worked out the above schedule for surveillance. For now. He has a few weeks to make a final decision, but choosing not to have chemo, at this point, is no greater risk than actually having the chemo. And in fact is less, given the risks of chemo.
If he chooses not to, we recognize that they may find cancer later, he may need 3-4 rounds instead of two. But maybe not.
As for the kidney cancer, he needs surveillance for that, but the CT scans will address that. One note is that he'll be evaluated for Van Hippel-Lindau disorder, which is a very rare hereditary disease which basically shows up as two or more tumors in locations which would be very unusual otherwise - like a kidney tumor in a 39 yr old (the testicular cancer is not unusual in his age group, but having that + kidney cancer is). This won't make any real difference in treatment, but will indicate if he has a genetic predisposition to it, and give us some guidance for our kids' need for future testing.
I wish I could say this was a relief. However, in some ways it prolongs the worry. But even if he did have chemo, he'd still have to do 5 years of surveillance anyway. And I at least would still worry, because that's what I do.
So.
We can't yet say he's cancer free. We don't know for sure that chemo will never be necessary. For now, it looks like we'll rely on prevention and surveillance, unless things change.
And again, how grateful I am to this incredible support group we have - here in SA as well as around the world. These last 2 months have not been easy, but you all have made it so much more bearable, and have made our kids very happy.
And after all that today, we treated ourselves to lunch at Il Sogno :)
