Length of HT

I'm wondering how to determine the best length of HT. We've gotten some conflicting input from different docs.

5.5 weeks post diagnosis, my husband finally had his final scan (Sodium Fluoride PET...thankfully it was clean!) and he started casodex yesterday, with a plan to get his first Lupron shot next week.

We're going to do the triple play (HT, HDR Brachy at UCLA, and 5 weeks of IMRT with a TBD doc...we have a doc at UCLA we really like, but it's far and we are still researching closer options).

The RO at UCLA (Dr. Chris King) recommended 12 months of HT.

Yesterday we met with a Medical Oncologist who specializes in prostate cancer...he recommended a MINIMUM of 18 months (and said he'd definitely want to push it more toward 2 years if he's tolerating it well...) and he also wanted to consider adding a chemotherapy boost (taxotere), which we could do after both courses of radiation have been completed and he's kind of recovered from them.

His reasoning all made sense...throw everything at it...first shot's the best shot...but it seems there's no real data showing the ideal length of time, am I correct?

I'm at a terrible low point right now. I'm really, really upset at the idea of a long course of HT. I'm trying to be positive about it and I know it's an essential part of killing the cancer, but I really, really hate that he has to do it. I had just wrapped my head around a year (and given how long the last 5.5 weeks have felt, a year seemed overwhelming), and hearing that our best shot at a cure might mean double that just punched me in the gut. At the same time, I don't want to encourage cutting the HT short and jeopardizing the shot at a cure. Any thoughts/ideas?

Hi WifeOfPie-

I am very glad your husbands scans were clean- that is cause for celebration.

I read your posts and find so much reason for optimism going forward, even when I know too well the fears that hover every day in this new world. If I am reading the situation correctly, cure is possible. I am very happy for you both.

My personal opinion- I like the MO's approach- throw everything at it, including the chemo, although there is NO scientific evidence that indicates it increases survival time in non-metastatic cases. I assume his approach is based on the presence of the type 5 cells. Since the taxotere chemo is well tolerated by many, I understand the rationale of knocking the cancer cell # so low (if it is not eliminated) that you have more time before recurrence- and with the new therapies being tested, more time means more access to newer better treatments.

regarding HT- I cannot say anything about a "best" amount of time. Presumably I am on it for life- but I can say that almost one year into it, HT and its side effects are a minor part of my daily coping- if I knew I would be off HT in one more year, right now I would think that to be a piece of cake (or Pie). Important- MOST important- get and stay physically active- if you let the HT drive you to inactivity (joints can be achey alot it seems) it will bury you. If sexual activity is important, set a regular schedule and use meds if needed, so you have some function left after 1-1.5-2 years of HT- it can be done (I hope).

Your husband is lucky to have you as his partner in this journey. I am rooting for you guys.


Yes, but not today.....
rf

Length of HT is one of the more debatable subjects here--and we certainly have our share of things we debate. In general with high risk guys, most of us seem to be in the 18-36 month time frame. Allen can quote a recent study, but as I recall it seemed to show that 18 months may be as good as 3 years. (Emphasis on "may.")

But here's the thing...you certainly don't have to decide now. I did 18 months and I always did the one month Lupron shots to give me that flexibility. (You can also get anything from one month to six month Lupron shots.) I was also getting monthly PSA tests, so the monthly Lupron shots corresponded nicely with my blood tests. If the HT is really messing with your QOL, you can pull the plug on it early and if you think you guys are tolerating it okay, you can forge ahead.

And really, really glad to hear about the negative scans. Now you can go full speed ahead for a cure and start kicking some PCa butt.

The RO assumes that cells have escaped from the gland; hence he recommends a full-on attack.
Dr King appears to be less worried and recommends a shorter course of hormone therapy.

But I agree with Redwing; once your body 'adjusts' to the low testosterone levels, 12 months of therapy isn't that much different from an 18 months course of action. While on hormone therapy, it is important to keep exercising and eat appropriately.

This MO happens to only treat prostate cancer patients, and he knows the RO's at UCLA we've spoken with...but I admit that I did not want the appointment with him and went to appease my hubby the patient ;-) To be honest, I didn't like the guy a whole lot (the MO), BUT he did have some things to say that made sense (regarding assumptions of microscopic spread and the fact that a longer course of HT and/or chemo increases our chances of killing that microscopic spread and avoiding a recurrence).

I also felt like he looked at us with dollar signs in his eyes...gave us a list of all the services his office provides that insurance doesn't charge for (and there were lots of things most doctor's offices do without question).

The triple play is a non - negotiable. The only thing up in the air is where the IMRT will happen (whether or not we can find a closer location we like). It seems like, for the duration of radiation at least, the RO needs to be "the boss" of treatment...and it's best not to muddy things up with a MO.

However...when radiation is finished, who typically monitors the patient for the remainder of treatment (lupron, deciding when to end HT, etc). Is that still the RO?

"Hitting it with everything" is very incorrect if it is being stated literally. Using the aggressive method of the appropriate treatments is an appropriate course with "high risk" PCa as you have been diagnosed. You are not "advanced" according to your signature. You may be "locally advanced" but really can't tell.

This was me, "high risk" and at great probably of being "locally advanced" but no clear indication of it being "advanced". I used HDRBT, IMRT (including the pelvic lymph nodes) and 36 months of ADT3. The ADT3 was the standard based on the BOLLA study for "high risk" dx. I was never recommended to add chemo as there was no medical evidence that it would improve the cancer treatment, but it would introduce more toxicity and side effects.

More recent studies have moderated the length of ADT more in the 9-24 month range, but in "very high risk" situations 24-36 months is used. As I recollect, early chemo therapy can help when mets are present at diagnosis, but not otherwise.

To TA and RW points, I agree that it is easy to get too many doctors in the mix and then their often misinformation about treatments out of their expertise will lead to confusion by the patient in making decisions. Right now I would go with the RO as you have chosen that method for your initial treatment with hopefully with curative intent.

So, how long for ADT? You don't have to make that decision today, but most everyone will say at least nine months. Should you go 12, or 18, or 24 or 36? I don't know and neither do the doctors with 100% certainty. In your case I would expect 18 months at least. And due to the G9 maybe a bit more. If at that time there are no signs of problems you could take a vacation and see what your PSA does. If it stays down it might indicate you will not need further ADT. But that isn't certain. If the PSA starts up, it would indicate that you will need ADT for a longer time.

But why worry about that now? You know you will have some period on ADT and whether it ends up to be 18 months or 28 months should in no way be a consideration today. Now is the time to go all in physically and mentally with the initial radiation treatment and primary doctor leading the team. The rest will play out in due course. Will you need a medical oncologist? IDK. If the initial primary treatment doesn't work, then yes you would go to the mo for longer term maintenance therapy that is primarily drug oriented. But you will cross that bridge if and when needed.

In my own situation, I appreciated that my doctors were of the opinion to be more aggressive and so we went with ADT3 for 36 months based on BOLLA. So far I have been PSA undetectable for more than 6 years, so I continue to be supportive of the approach. What no one knows is whether 18 months would have been as good. But that is water under the bridge and doesn't warrant consideration. Done is done.

As to who monitors after the initial radiation treatment? My urologist has seen me every three months and I get PSA and T measurements. He also administered the ADT3. Due to the "high risk" dx and the probability of recurrence in my present time frame he chooses to monitor each three months and I appreciate that. For the first year I saw the ro every three months, then went to six months and now yearly. He mainly monitors me for radiation side effects and keeps my progress in the database for their long term treatment studies. It is now optional on my part if I want to continue to see him. For you, I suggest the doctor you trust and have a good relationship with. It will encourage great discussions about not only the PCa but other aspects of your life that it affects as well as keeping up with the discussion of new breakthroughs and the aspects of what if the cancer returns. What will be the strategy? I was fine with both my ro and urologist playing that role, but in their team approach the uro does the long term monitoring. They also find that the normal male side effects encountered with the urinary and sexual functions are for the urologist anyway.

WifeofPie-

MOs treat patients who are no longer curable. That is why they see monsters everywhere, ordering tests and proposing therapies that should have no place in the treatment of patients who are curable. It doesn't matter who they know, it matters what they know. And because they have no actual experience in treating real world people with the kind of radiation therapy Demanes is proposing, they do not really know much that is relevant to your husband. I would no more listen to an MO on the subject of radiation, than I would listen to a urologist.

I guess I would urge you to deal with it as far as you know it to be, with the best info and expert advice you have, and not based on the fear-mongering of an MO. There are many things it could be if you let your imagination go wild, and treating for all such possibilities would make your husband a very sick man.