No HT for G9?

at 7 weeks post RP with a psa of .19, the uro oncologist told my husband to wait 2 or 3 months and get another psa test. She said at that point if his psa had stayed around .19, she would send him to radiologist. If it was higher she'd send him to med oncologist. She also said she did not want to put him on HT.

I persuaded my husband to get the psa at 2 months rather than 3, and it's coming up next week. I have been a nervous wreck waiting for this psa.

Before his surgery Uro told me he would probably be on HT for the rest of his life. Then after surgery though he had a lot of G9 tumor and a positive margin she says she doesn't want to put him on HT.

Of course I don't want him on HT (and he says he WONT go on it) But I also want him around for as long as possible.

I'm confused and nervous.

I'll also let the smarter guys weigh in, but as one of the dumber guys here I'm not fully sure what the purpose of waiting for HT is. Between the G9 cores, cancer outside of the capsule and positive margins it seems appropriate. I can't say I blame your husband for not wanting to go on it, but it can be helpful for a VERY long time.

Sophie-

I recommend you go talk to a radiation oncologist on your own. Is there any reason you need a referral from his Urologist to do that? His PSA at 6 weeks was well ahead of the level predictive of biochemical recurrence (see the Veseley et al. study).

An interesting new study just opened up at Washington U in St. Louis. They are using a new kind of PET scan to detect recurrences. It is an C-11 Choline PET/MRI scan rather than a C-11 Choline PET/CT scan. The switch to MRI may potentially make a big difference in getting down to a lower PSA detection limit. They are only requiring a PSA of 0.2 ng/ml on 2 subsequent tests after an RP. (This compares to a PSA of 2.0 ng/ml for even the most sensitive PET/CTs commercially available - which would be far too high). This also means that starting HT now would destroy any chances of such detection.

Below are the details of the study. There are contact details, so you can ask about cost and whether he qualifies. Right now, it is the only one in the US that I'm aware of.

NCT02355054

The advantage, of course, is if he is found to have only regional (pelvic area) recurrence, it can be treated and perhaps cured with adjuvant radiation. If it shows distant mets, lifelong hormone therapy is his best option. I think it's a lot better than using PSA alone as a gauge.

- Allen

The fact is that G9 is extremely serious especially at his young age. I do not think the uro was correct that he would be on HT forever as there is no way he can predict that. Many men have long term remissions with intermittent HT and other treatments. I agree he should be seeing a rad-onc now. Why wait? The cancer isn't going to get any weaker in the absence of treatment.

I suggest you do the research now and choose the doctors you want. If it were me, I would be on the line to the top PCa medical oncologists like Myers, Sartor, Scholz, Lam, etc. and getting their opinions. It is often been said that the low risk are generally over-treated and the high risk generally under-treated. Now is the time to be getting your opinions and formulating treatment directions.   I would be finding out very specifically about your current doctor's experience and results with high risk PCa in young men.   If your husband is the average case in a very successful practice, then good.   If your current doctors don't have daily excellent experience with high risk PCa, then go to a doctor that truly specializes in high risk PCa. 

As to the use of HT, please don't be afraid.     I was on for three years and still have significant residual effects as my T has gone up very little in the last year. Yes there were negative side effects, but nothing that was tough to deal with. At the same time I went on HT my wife was having a double mastectomy, chemotherapy, and 35 days of radiation for her second bout of breast cancer. Seeing what she was going through showed me I was not having any problems with my relatively minor treatment induced side effects.

Just to give an example of a G9 who is doing the Intermittant Hormone therapy....I've been doing that for 5 years +...

Aggressive G9 should be treated aggressively...

Thank you all for your comments! This is what I take away, correct me if I misunderstood anything:

Reasonable options would be either to hold off on HT until more sensitive scans can be done to see if he has mets, and if he does, avoid radiation along with it's SEs, but go onto HT, or if no mets have salvage radiation (with no HT?) and hope for a cure. Other option HT until he's healed enough to have salvage radiation. And a good idea to find out how experienced our rad onc and med onc are with high risk PCa.

And consider going to a top high risk doctor.

Right now our UO, MO, and RO are one of the many teams at Fox Chase Cancer Center which is rated the 19th in the country. My husband loves his uro and trusts her completely. He doesn't want to talk about or think about any treatment until she tells him what it will be. I think that is his coping mechanism. He also believes he won't be going on HT.

I on the other hand am filled with anxiety. I worry all day long, and wish my husband was more willing to discuss it with me.

How do I go about finding out how experienced in high risk PCa his onc team is? Do I call the office and leave a message for the MO and RO to call me and just ask them?

Do I consult with a Myers or another top doc in addition to his current team?

It will be very difficult to convince my husband to make any change or do anything proactive.

As a Gleason 9 I don't see him avoiding a bit of temporary ADT with his radiation. It isn't just to buy him time to heal. It increases his chance of a cure (or at least a long-lasting remission). But aside from that you described his options perfectly.

Candidly, I don't see a burning need to change doctors right now since he likes his urologist and since she is part of a team that includes other specialists. Do you go with him to his appoinments? It might be a good idea to go and bring your own list of questions. If you give up on the idea of switching doctors it won't be the elephant in the room when you talk to her and you may be able to form a better relationship with his medical team.

I suggest you have a face to face meeting and ask the doctors specifically about their experience and results with high risk patients. Try to get numbers where you can, anecdotal information will be more likely. Have them tell you about the serious cases and how their situation compared with you, the treatment they used and the results. You don't want to be the worst situation they have dealt with. Hopefully they have successfully treated many 53 year-old G9 patients successfully. If your risk profile is outside of their experience, then it would be advisable to find a specialist that has a lot of experience with your risk level.

Also it never hurts to consult with a different medical oncologist that specializes just to get another perspective. It will either confirm that you are on the right track or raise questions that need to be addressed. When I was dxd with a high risk situation, my uro required me to get multiple opinions (another uro, two rad-oncs, and a med-onc) before taking me on. The opinions I received were supportive of what he was prescribing and I liked him so I hired him to be the team leader.

I also consulted with Dr. Charles Snuffy Myers. He agreed with the initial treatment plan and identified possible situations that might require me to turn to him. So far my treatment plan has been successful and I have had no need to use other practitioners. My uro has collaborated with him and was fully aware of the consult.

I am concerned they rushed you to surgery. To me that is a red flag. If they have all the treatment methods, why didn't they spell out everything and give you an opportunity to consider alternatives? Prostate cancer is rarely an emergency situation. In most all cases the patient always has several weeks to start treatment. But that is behind us. Now it is best to truly understand what is going on, your risk, the best treatment methods, and get a sound treatment plan underway. Some specialists like to try to get ahead of high risk disease. Unfortunately, I think too many practitioners only respond to the disease as it progresses and then risk playing catch-up.

With aggressive PCa it can be difficult to get ahead of the disease, so I think it is important to have plan. For instance, if the disease that is giving off PSA is still local it can be radiated and potentially provide a cure or a long durable remission. But if you wait too long and it spreads outside the radiation area and then can't be controlled by radiation alone. HT is routinely used to knock down the cancer so radiation is more effective. And if the cancer is already outside the area, then HT is the frontline treatment that can affect control and remission.

With your currently low PSA, it is unlikely the scans will find a micro met. But, that is the problem. If we know where the cancer is we can more directly treat it. If we wait till we can see the cancer, it may be much more difficult to treat and control. Tall Allen's info is important regarding scans and shows the progress being made.

Best wishes Sophie.   As you are learning, there are a lot of choices to be considered and made with treatments that require you to keep an open mind and double check with other practitioners from time to time to know you are on the best track.