Gleason 4 + 5 -- need advice

After consulting with my RO, Dr. Haas at Winthrop, I decided to go with the hormone deprivation therapy to supplement the SBRT/Cyberknife. He is suggesting 2 months before and 6 months after. I think that will provide the optimum outcome with minimum side effects.

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This was the email reply I just got from Dr. Haas:

I am aware of Alan’s data and all of those patients were treated at Winthrop before he left.

I still think you should have hormones in conjuction with CyberKnife. High risk (as opposed to low and intermediate risk) is a very heterogeneous group as you are GS 9 on Hopkins review as well as a slightly larger gland (greater than 50 CC.

Hormones will cause the GS9 to regress and downsize your gland by 30% which will enable me to treat a smaller volume of prostate (and thus even less bladder and rectum)

If you refused the hormones, I would still be willing to treat you but my recommendation still stands

Have a great day

Jon

That sounds like a reasonable plan. I suppose Haas was mentored by Katz and follows a similar protocol - 35 Gy prescription dose? 5 mm margins? What about the pelvic LNs?

Tall Allen,

You asked:

Tall Allen said...
I suppose Haas was mentored by Katz and follows a similar protocol - 35 Gy prescription dose? 5 mm margins? What about the pelvic LNs?

No pelvic radiation.
I should have asked about the dose and the margin but did not.
I will ask that question and find out the answer.

Tall Allen,
Thanks for the study link. Always interesting.

TA said...
I saw this clinical trial of ADT+SBRT and thought of you

That study has not started yet. It is at Memorial Sloan Kettering Cancer Center for intermediate risk prostate cancer.

Last Monday I saw an oncologist Dr. Susan Slovin at Memorial Sloan Kettering Cancer Center for yet another opinion but had not posted anything about that consultation. She was highly recommended by someone we know.

She did not mention that clinical trial to me. Maybe because I have a Gleason 4 +5.

She recommended some things that sounded reasonable, but also some other things that did not sound reasonable.

Her basic recommendation was ADT 2 months, IMRT followed by ADT for 12 - 15 months. She said that conventional recommendations were for 2 years of ADT after radiation. But, that recent results suggested that 1 year was OK.

One thing she said that was important to me was that she recommended ADT in addition to radiation because "you really have only one shot at a cure". Not an exact quote. But that makes a lot sense.

i showed her a print out of the 2014 Katz + Kang paper. Based on a 20 second glance she rejected it out of hand because it had only about 97 subjects and because the biological free results were only about 60% which she said was low. I suspect she did not notice that it was high risk only. She also spent only about 20 seconds reading before coming to a conclusion. Not cool.

All the larger studies I have seen included a mix of low, intermediate and high risk patients and did not really distinguish them in the analysis. Not really relevant to me.

She was also against CyberKnife because she had personally seen 5 patients for whom CyberKnife did not work. Of course she never saw the patients who had success with CyberKnife since they would have no need to see her. 5 is not a good sample size.

She also said she was attending the Orlando conference, had seen the agenda and that Alan Katz was not on the agenda. Sort of true. But she was not right either since Katz & Kang gave a poster presentation at the conference.

The higher your Gleason score the more undifferentiated the cancer cells are and the more aggressive, which means likelihood of spreading (metastasizing) beyond your prostate.

Here is the angry insurance rant concerning Lupron payment.
Have other people had this type of problem?

My urologist sent in an electronic prescription for Lupron to Express scripts last Friday.
We called EP a few minutes later to pay extra to expedite the delivery.
EP said it would be delivered to us Sunday, Monday or Tuesday. Monday was President's Day.
They said there would be a $90 copay + $28 rush fee.

We checked online Monday night and it looked like it had not yet shipped.
We called Express scripts who said it needed "pre-approval" before they would ship.

We called EP pre-approval department who gave us instructions to tell our urologist ( who had already sent in prescription).

Our urologist contacted Express scripts Pre-Approval department.

I got an automated call from EP saying "pre-approval denied".

We contacted them and they said we had to use Eligard and not Lupron.
They could have told us this 5 days earlier. But, did not.

The urologist office says they can supply Eligard and only do it at the hospital (Columbia P&S). I made an appointment for next Tuesday.

We tried to find out about insurance payment for Eligard.
I am on Medicare but prescription payments come from secondary retiree health plan that is administered by Cigna.

Many phone calls later re:payments, co-pay etc.

Cigna says the doctor has to call in the prescription to get payment done properly for Eligard. Not an electronic request.

Columbia P&S policy is that doctors can't call in prescription order. Electronic only.
More on this tomorrow.

The other option was to go to the hospital who would submit their bill to Medicare as a medical treatment.
We did call Medicare to ask if they would pay or just forward this to Cigna. Got an ambiguous answer.

Tentatively I expect to start the hormone deprivation treatment next Tuesday.
The insurance process, if it works at all, introduced a 1 week delay and a lot of time spent on the telephone.

This insurance company seems totally dumb! Moreover, getting a drug in a hospital setting tends to be more expensive!

RichardNY said...
Here is the angry insurance rant concerning Lupron payment.
Have other people had this type of problem?

Maybe I'm not understanding, but I thought Medicare would fully cover your Lupron. I had Medicare with a supplement (plan F) and was fully covered for the nine months of Lupron, no co-pay. I believe it was billed through Part B, definitely did not go through Part D. Casodex did go through part D and there was a very small co-pay.

Important question about Eligard.
I expect to start treatment in the next day or so.

I think, in this forum, that some people said they were taking Casonex at the same time they got Eligard or Lupon.

Am I reading that correctly?
Why add Casonex? Does it reduce side effects?
Should I ask my urologist who will inject the Eligars?

The way Eligard or Lupron works is that it sharply increases testosterone output. Then, through negative feedback, your testosterone production gets shut down entirely. This is called a testosterone surge or flare. Casodex is sometimes started a week or two before Eligard to mitigate the effects of the testosterone flare. After that, Casodex is stopped because testosterone production has stopped.

It may be a useful strategy in men who have a lot of metastases that may flare up with the temporary T surge. For most men, it will make no difference because some extra T will have no effect on the cancer.

Some doctors do it, some don't, some continue patients on both. There's no right answer.

Tall Allen,
Thanks for the clarification about how Elogard works and why Casodex is sometimes added.

You also said:

Tall Allen said...
There's no right answer.

For better or worse, at this point in time, that seems to be true about many aspects of prostate treatment.

I went to 3 ROs and a head of urology at a major hospital for consultation and probably got 5 different recommendations. I am going with the one that sounded best.

Tall Allen said...
The way Eligard or Lupron works is that it sharply increases testosterone output. Then, through negative feedback, your testosterone production gets shut down entirely. This is called a testosterone surge or flare. Casodex is sometimes started a week or two before Eligard to mitigate the effects of the testosterone flare. After that, Casodex is stopped because testosterone production has stopped.

It may be a useful strategy in men who have a lot of metastases that may flare up with the temporary T surge. For most men, it will make no difference because some extra T will have no effect on the cancer.

Some doctors do it, some don't, some continue patients on both. There's no right answer.

With no detectable or symptomatic metastases at diagnosis, I was started on Lupron alone. After almost 8 weeks, the PSA had dropped from a high of 9.6 down to around 1 or so. We were looking for <0.5 at start of radiation, so doc added Casodex. I stayed on that combo for 3 years ("ADT2"). No one could definitively say if it was better to do both or just Lupron. Since my PSA went undetectable, we just decided to continue that way for the duration.