The long middle stretch

Posted by northoftheborder @northoftheborder, Sep 23 8:39pm

As I approach my 3-year cancer-versary in a couple of weeks, my new oncologist today again confirmed that even though I'm stage 4 and using drugs to control my cancer, it's reasonable to call my current status "full remission."

He suggested that I'm in a long stretch now of indeterminate length (possibly many, many years) before anything changes, and that I wouldn't need appointments and blood work every 3 months if I weren't in the IRONMAN/TruNTH study.

As it is, we decided to make every second appointment a telephone appointment, since all we do is chat anyway ("Everything ok?" "Yep, no changes, except the hot flushes and fatigue aren't as bad as last time and I've been more active." "Any new pains?" "Wouldn't know with the neuropathy from my spinal compression." "Peeing ok?" "Yep" etc. etc.)

So onwards with the extended life and all the second chances I didn't think I was going to have back in 2021 when I was lying flat on a hospital stretcher, paralysed, while they gave me "the talk" about an incurable cancer diagnosis, or afterwards when I was making notes about my finances for my survivors.

Don't give up, folks, even if the news sounds grim at first. We're not through yet.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

rwj613 | @rwj613 | Oct 2 6:07pm

Thanks so much, I'm metastasis from neck down, I'm finding out that they're fighting me on surgery and no radeation although I've asked. Thanks much for the info and good thoughts to everyone.

northoftheborder | @northoftheborder | Oct 2 6:58pm

(Take everything I write with a grain of salt, since I'm not a medical professional.)

So it sounds like you have high-load metastatic prostate cancer. The old way to treat that, I think, was to use some chemo (low "palliative" doses) just to manage the pain.

These days, some practitioners will approach cancer like yours (and mine) with curative rather than palliative intent if the patient is strong enough and willing — that doesn't mean it will be cured, and it means harsher treatments and more side-effects, so it's not for everyone.

In your case, they might use a "triple treatment" of chemo (maybe stronger), radiation to the prostate, and medication (ADT and ARSI) all close to the same time to try to give the cancer a knockout punch, at least for a while. There are other options, too.

But what it comes down to is that if you want to be treated with "curative intent" (again, not necessarily cured forever), you have a right to ask for it, and you have a right to seek care elsewhere if your medical team isn't up on the latest practices, or even if you just don't jibe with them. We *do* have options and hope these days, even at stage 4.