Newly Diagnosed

[805guy]

Got the diagnosis last week I had Gleason 7 (4+3) adenocarcinoma in right mid prostate (70% of tissue) and 7 (4+3) in right apex (60%of tissue). Rest of prostate is benign. MRI revealed the lesions are in the transition zone (TZ). Just waiting for the PET scan to determine whether it has metastasized. Really, really want to avoid RP and the myriad of complications. I'm considering the Tomotherapy HI ART radiation therapy at City of Hope in Los Angeles. Anyone with experience with this form of therapy and/or City of Hope?

[Tall_Allen]

I agree with you that gay men should never have prostatectomies:

prostatecancer.news/2021/12...

I had SBRT (5 treatments) at UCLA, but tomotherapy is good too.

[805guy in reply to Tall_Allen]

Thank you for your reply. This is very welcome and helpful information. I appreciate your knowledge and experience. If I qualify for SBRT and insurance covers it, I’m all set to pursue it. Otherwise, tomotherapy is the course I will pursue. Are you familiar with TrueBeam and it’s effectiveness? Oh, and any opinion about City of Hope? I intend to seek a second opinion from UCLA as well. Thanks!

[Tall_Allen in reply to 805guy]

I had SBRT using Truebeam with Rapidarc in 2010. A variety of platforms are capable of delivering the radiation. It doesn't matter as much as radiation oncologist. I like Amar Kishan at UCLA.

[805guy in reply to Tall_Allen]

I'm bummed out just learning my insurance will not cover SBRT since I am G7 unfavorable and more than the max. 50% lesion coverage. I also learned UCLA radiation oncology IS covered by my insurance however Kishan is not among the providers listed under my coverage. I would imagine the many oncologists at UCLA would be top tier nonetheless, agreed?

[Tall_Allen in reply to 805guy]

1) Appeal that decision - There is no medical reason that SBRT should be limited to favorable intermediate risk patients.

2) I don't know if other radiation oncologists at UCLA are top tier.

3) Consider the following clinical trial ("GUIDANCE") at Cedars-Sinai:

clinicaltrials.gov/study/NC...

Zachary Zumsteg 310-423-8965 is the lead investigator there and he is very good and uses the same platform I was treated with. When you do a clinical trial (as I did), all costs are covered (your insurance is irrelevant) and you get excellent care. Call him directly.

[805guy in reply to Tall_Allen]

Thank you very much. I will certainly look into it.

[LiveLongAndPropser]

Sounds like we're in the same position, diagnosis and age-wise. I am also going toward the minority provider opinion with SBRT rather than RP. Working in healthcare, I know they are about long term outcomes, but a bit short-sighted on the impact to quality of life. I'm going in with the perspective that advances in PC treatments are moving at warp speed and in the unfortunate event that I have a recurrence 10+ years in the future, there will be better alternative treatments available. Maybe it's a naieve perspective, but I just have read enough to know that if you can avoid RP, which we're heavily pushed toward with unfavorable 7 GG, and do some form of RT (the more advanced form, the better), life will be somewhat less impacted with a hopefully better emotional state for faster healing. Just my crazy opinion, as I've yet to start treatment myself...

[805guy in reply to LiveLongAndPropser]

Thanks for your reply. Not a crazy opinion at all. You are spot on. I place value in a more quality life vs. a longer life. If I had at least 15, maybe 20 years more max., I’d be good. Excellent point about the anticipated strides in technology for the future. That reinforces my opinion that RT or SBRT is the course I would prefer to take. Just need to know if I’m an appropriate candidate for either and to what extent insurance will cover, so we shall see. I would really prefer to do proton therapy at Loma Linda but insurance won’t cover it and I don’t want to enter the appeals gamut. You are correct our situations are similar in our new diagnoses. I would very much like to keep in touch to see how things go for you and I in turn would be happy to share my experience as well. Still recovering at the moment from the biopsy I had 2 weeks ago and realize no treatment could begin until mid-August at the earliest until I am fully healed. Stay tuned.

[cpl901]

Hi, it looks like my diagnosis, i have 3+4. PSA went down from 7 to 4 in the last months without doing anything special than may be healthy life, but tumor is still here. PET scan confirmed, without LN. In my case i cant avoid surgery because my prostate is small. Not convinced that a radiologist could do a focal radiotherapy without margin that will cause side effects similar to surgery. Every prostate center that i visited would advise me RP, because of my age 57. I just wish us all doing the right treatment that we wont regret.

[805guy in reply to cpl901]

Thanks for your reply. My prostate is large but not really abnormally so and I really will advocate for RT given the experiences I have heard with RP. I realize RP is strongly pushed because physicians (many of whom are also RP surgeons) want to maximize longevity but for me, I could care less about that if I am left with ANY degree of incontinence or impotence. Further, the possibility of metastization from RP is unacceptable. I realize RT is also not without risks of recurrance, but it is about my quality of life rather than the quantity, I guess. I am prepared for the onslaught of RP opinions. Given the very permanent nature of RP and the possbility of so many side effects, I would rather go with RT. Just my take.

[cpl901 in reply to 805guy]

I understand you fully, and your arguments are right. It scares me also the side effects of RP more than the tumor, and that is what PC makes it difficult. At the end i m just capitulating to surgery becaause otherwise i wont treat it anyhow. I m just wondering if the surgery fails the surgeon would just sent you to the radio oncologist, and that is a way to get rid of the patient, saying may be : "sorry it did work......".

[doc1947g]

3 years Post-VRMAT-RT & ADT

In 2020, I was diagnosed Prostate Cancer G(4+3=7)group 4 the whole prostate with multiple tumors. No RP due to health problems. Was put on Lupron Depot 22.5mg X 2 and VMAT-RT 3 Gy X 20 fx

After 3 years my PSA went from 20.3 μg/L down to 0.02 μg/L and Testosterone from 438.04ng/dL down to 60.57 ng/dL 🙈🙉🙊.

[805guy in reply to doc1947g]

That's really amazing. Was there no radiation? Or was the sole form of treatment ADT? Did the tumors shrink or were eliminated?

[doc1947g in reply to 805guy]

VMAT-RT is a radiation ☢️. I know that the prostate shrunk and the tumours were eliminated.

[805guy in reply to doc1947g]

Ah ok, thanks for that. I am expecting I will also likely have ADT after RT.

[doc1947g in reply to 805guy]

Being a G(4+3=7) usually require ADT.

[805guy in reply to doc1947g]

Did you experience any ED or impotence after radiation or after ADT or both?

[doc1947g in reply to 805guy]

I am impotent since then. ☹️☹️☹️

[NYCguy123]

Sorry about your situation. I'm newly diagnosed, as well. I'm also in a 33 year relationship! I have weighed my options and have decided to move forward with SBRT. I'm in NYC and am having it done at NYU in mid August. I wish you well!

[805guy in reply to NYCguy123]

Thank you, I appreciate that and wish you well in your treatment. I intend to follow the same path as I find far greater RP risks. Was there any discussion of ADT? Please update here about your experiences. None of this is fun but I find learning from each other invaluable and encouraging.

[805guy]

Thank you. Unfortunately, I discovered my insurance will not cover SBRT for my diagnosis. It is only covered up to favorable G7 with 50% or less coverage (mine is unfavorable G7 and 70% and 60% respectively). So it sounds like I will be having a longer treatment regimen. The only encouraging factor is that I may eligible for the shorter moderately hypofractionated regimen (as opposed to lighter dosage conventional) assuming the cancer is localized (which MRI indicated it was but PET will confirm) and "is medically necessary."

[sydney1972]

My situation is 50yo, PSA 20, Gleason 4+3, possible seminal vesicle involvement.

Seen two radiation oncologists, both advised that if I choose RT, at least 6 months of ADT would be required, likely 18 months.

One of them even suggested that surgery may be the better option.

ADT just sounds so awful

[805guy in reply to sydney1972]

I hear you. None of this is good but everyone reacts to the meds differently I suppose. That's even if they are prescribed. My late father in law was prescribed ADT after brachytherapy in the 1990's when he was about 57 and he was fine. He died by the way just shy of 80 from congestive heart failure. Tall_Allen on this thread thoughtfully shared a link to a clinical trial related to ADT which may be of interest to you:

clinicaltrials.gov/study/NC...

Check it out. I sent an inquiry to see if I might qualify. One thing is certain: every individual case is different. Good luck.