Upgraded to unfav intermed, RO says combo therapy

Husband’s MRI results show irregularity in capsule, 4/5 for extension liklihood. PIRADs 5.
No apparent vesicle involvement.

Met with RO today. His thinking is that Gleason score is low given size of lesion seen on MRI. His recommendation is 5 weeks EBRT followed by brachy boost. Said he does not agree that HDR mono or seeds alone is enough for my husband’s case. Said side effect rates are low, long term, with combo therapy.

Oh also my husband agreed today to a second DRE and sure enough, a hard, palpable lump can be felt down the length of the right side (first DRE was neg). This was consistent with MRI findings.

Before our meeting, I was pushing for a consult for HDR mono. This doctor says he won’t do brachy mono, doesn’t feel comfortable given unfavorable intermediate with extension and larger tumor volume. He believes there’s most likely 4+3 going on also, given MRI appearance.

We liked the doctor. Know he’a good. Also, he is coincidentally covered by our Kaiser policy. We would have zero expense if we go this route. However, the medical oncologist we spoke with briefly warned that while this RO is well respected, he can be “conservative”, and may opt for more treatment vs less.

I guess I’m trying to help my husband figure out if it would be worth it to talk to an HDR brachy guy also, one that we would pay out of pocket. Are side effect differences considerable enough between these two avenues? We need to think about that. I wondet if another doctor would agree with this one, or have a completely different opinion.

I know my husband is getting to a point of wanting the plan to be solidified. So he can move forward and take care of it.

I forgot, and its not in your profile - where are you located?

ALWAYS get opinions from experts who are specialists.

With LDR brachytherapy, I can certainly see why you might need external beam with a palpable extraprostatic extension.

With HDR brachy it may not be necessary because it can treat a margin outside of the prostate that LDR brachy cannot treat.

With SBRT, there is no issue about treating a margin outside of the prostate either.

Thank you!

No, any treatment or consults outside of Kaiser would be paid for by us, without any coverage. Kaiser would never approve of anything beyond what they offer. What they offer is active surveillance, surgery or LDR brachy.

Allen we live in Orange County. RO we saw today is at UCSD. Husband would consider staying part time with family in San Diego during five weeks of treatment, in order to work with the doctor we saw today. But while UCSD has HDR capability, it’s not covered under Kaiser protocol. Frustrating.

We are not wealthy people but could maybe pull together the resources for outside treatment, IF it meant a significantly better quality of life due to fewer SE’s. i figure there are men out there that would pay a lot to go back and do things differently—I think about that when I consider the expense. But cost-benefit analyses are hard to make when outcomes are unpredictable.

The RO said with combo therapy, risk of bowel problems are pretty low. Urinary strictures are a possibility, but can happen with any radiation treatment. But the biggest concern of my husband is ED. We were quoted around 75-80% success with potency after combo, what I’ve read elsewhere is 50%? I’m in my mid-forties and can’t imagine the impact on a marriage made by ED. It breaks my heart that my husband is having to consider that possibility.

But it is what it is and we will deal.

Stray said...
My husband got a certified letter in the mail, from Kaiser uro, stating that he would die from prostate cancer if he did not schedule an appointment for a prostatectomy, after they received the upgrade from Johns Hopkins (which was only 3+4).

Boy, does that ever infuriate me. Wonder if Kaiser knows and/or encourages their physicians to send such dreadful letters. When they say stuff like that to your face, at least it's righteous, even if misguided and hurtful. But a letter? Looks like a CYA, though it could actually have the opposite effect if a patient succumbed to such intimidation, had the surgery and it went badly. That letter would be Exhibit 1. Then testimony from the RO that alternative therapies would have been just as effective... Sorry for thinking like a lawyer.
I hope at least Kaiser paid for the JH second opinion.

I used HDRBT and IMRT more than seven years ago. No negative side effects from the radiation. I agree you are on the line regarding the combination, but I don’t view it as overtreatment.

Great, thank you for the above info. We’ll get on that today.

Dr Szabo is name of urologist. He was second doctor we saw at Kaiser, after first doctor told my husband over the phone that he has cancer, would want to have his prostate removed and would become impotent as a result. No other info was given at that time which, given all that we know now, is unbelievable. They both pushed surgery so hard. That was for what was only Gleason 6 at the time.

It was through THIS SITE that I was able to get the best info and links to data that have educated us. My sincerest of thanks to all of you who spend time helping people here! It’s an invaluable service for people.

Stray said...
Thanks Michael!

I need to look into that insurance angle with my employer next week. That’s a great point that someone else mentioned.

My husband got a certified letter in the mail, from Kaiser uro, stating that he would die from prostate cancer if he did not schedule an appointment for a prostatectomy, after they received the upgrade from Johns Hopkins (which was only 3+4). No joke, wish you all could read it. We’re a lot less comfy with Kaiser than before this Dx, that’s for sure.

Good grief . Surgery or radiation have very similar long term results and it doesn't sound like your hubby is a candidate for AS.

Sober 1,
I’m so sorry to hear that. It’s really hard to be in a position where you’re fortunate enough to have healthcare coverage, but it’s still just not enough.

We’re new to the healthcare game and have a lot to learn. But it seems crazy that, because someone is a urologist or prostate surgeon, they aren’t obligated by their code of ethics or just plain professionalism to inform themselves more in caring for people with PCa.

Good thoughts and wishes to you.