Hi all! First time posting here but I have been lurking the last month or so and thanks so much to all of you who take the time to contribute. It has helped me ramp up the learning curve so quickly and the comradery and support here are powerful.
My story:
63 year old reasonably healthy male. PSA 7 after a reading of 4 just four months prior. My biopsy results graded out at a Gleason of 8 (4+4) on three of the twelve cores taken and 7 on one other (out of twelve). So a Gleason of 8 overall. My urologist recommends HDR with a brachy boost plus 12 months of ADT assuming the scans come back negative. This surprised me a bit as he is a surgeon but he noted, as I have read, that this treatment plan has the best outcome for aggressive high risk prostate cancer. Anyone have experience with this tri-modal treatment plan?
He recommended a bone/CT scan but when I brought up the PSMA scan, he said that was certainly more sensitive but a real fight with insurance companies to get approved, as the test cost is about $30,000. Once I told him that is what I wanted he readily agreed that they would do their level best to get it approved. I have BCBS . Anybody with this coverage have experience with getting authorization for this scan?
He recommended Lupron but after I inquired about Orgovyx due to what I had read was a more benign side effect profile, he said that was another option but that testosterone levels tend to build up faster after discontinuation. Anyone have thoughts on Lupron vs. Orgovyx?
He is also ordering a Decipher test, which I am confident will not exactly have me doing cartwheels. My brother was diagnosed a year ago. Aside from the family history, I know I have at least one gene variant that indicates higher risk for aggressive prostate cancer with significantly poorer outcomes.
I know that TallAllen (who is really pretty amazing in his dedication to helping others on this site) recommends lots of exercise while undergoing treatment. I would think this would be a real challenge between radiation and ADT. How do you do it?
I am without a spouse or partner (recently divorced) which frankly makes this a lot harder to deal with. My two sons and my brother have been great, as have my friends, but it's just not the same. This diagnosis came months after my retirement and weeks after relocating down to North Carolina from the Chicago area, so no local friends other than my bro. It's hard not to spiral and assume the worst.
Thanks for reading this rather lengthy post but I need to get it out there.
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Scuttfarkus
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It sounds like a very good plan! Where did you find an HDR brachy expert in NC - at Duke??
I think you are wise to fight for insurance approval, since a PSMA PET is FDA-approved for high-risk patients. My feedback from patients is that the insurance company usually relents if you appeal. But it is a headache. It may help identify regional lymph nodes for radiation boosting.
Unless you have pre-existing cardiac problems, I think Orgovyx and Lupron have the same side effects. Lupron is more convenient with multi-month shots.
If you can afford a trainer at the gym, it may be that a "drill sergeant" is your best bet. High intensity exercise is the only way I know to prevent radiation- and ADT-induced fatigue. And it helps radiation work better.
This clinical trial provides different therapies depending on Decipher scores:
I am a similar background and age. Sounds like you have a good plan. I got BCBS to pay up here in New England but I was prepared to pay myself - my quote from Dartmouth was around $5k. Good luck.
in addition to this site, we find UroToday extremely helpful where you can see the specialists discuss the latest clinical trials and practices. NCCN guidelines guide insurance coverage. You can access those.
My husband travels to Duke for second opinion and guidance. They are an expert center.
I am a gleason 7, but cancer in 10 of 13 cores, so I requested a PSMA from Urologist and they told me the same, that insurance would not approved. Asked them to submit for approval anyway and it was approved on first attempt (Aetna Medicare Advantage in Georgia). Sounds like they are willing to request and then go with the appeal if necessary, would just stay on top of them until it is approved.
I started ADT and had 20 radiation treatments this past spring and was able to go to the gym for hard workout several days per week with no issues. Besides helping my body with the reduced T, it was a great mental relief as well. Please follow Tall_Allen's advice and get a trainer, for a few weeks at least, to help you develop a good plan for your gym days (and don't forget cardio!).
Which part of NC are you in? I have a son in Black Mountain and absolutely love that area.
Yes I did all three. Read my bio. Dr wanted 18 months adt which was a bit ruff but not intolerable.I didn’t want to stray from his instructions so as to not second guess later if it comes back.
All advice seems good and as usual Tall_Allen is a fountain of advice and research backed info.
I am G9 with a whole lot of comorbidities so complex choices for me but thought I would say that I empathise that the PCa diagnosis seems to drop out if the blue at a time in our lives as men when other struggles and transitions are either in progress or close. Managing the psychological and emotional ups and downs is for me (and in sure others) one of the major tasks. Whilst I have a very supportive wife the reality as a disabled person in their 70s is that I can also feel isolated and I urge you to find a support group.
As others commented you seem to have a good grasp of what can be a confusing number of options and decisions but if there is anything good about high risk PCa it us that the options seem clearer and more obvious, at least that was my take on it.
My diagnosis and treatment options were similar. 65 yo when diagnosed, G4+5, confined to prostate. Discarded consideration of RP early given side effects and was less effective treatment.
I started Lupron (total 18 months) in early October, had 24 sessions of EBRT starting in late January, had a 2 week rest and then Brachy.
I was pretty active to start - I rock climb, mountain bike, and backcountry ski. From the reading and advice of my doc I started a weight training program with a trainer once a week and once on my own.
Lupron - lost hair on my legs and arms, could go a couple days w/o shaving, libido in the toilet (took a Viagra each evening to try and maintain morning erections). By the time I I got the Brachy my stamina was down. Climbing something hard at the gym I'd get winded and have to rest halfway up. Skiing downhill no problem - but the uphill slogs were sloooow.
BUT - I never stopped exercising 4-5x a week and I think I only had one day when invited to climb that I said I needed to rest. My Lupron course ended in March and I feel great. My stamina has returned (erections too!) and hair on my legs/arms returned so I don't feel like a naked mole rat
I thought the Lupron thing was not so bad - really, the worst was regular hot flashes, which were annoying, but not life altering. After Brachy I did lose sleep as I had to get up a lot at night to pee, but that faded after a couple months.
You hang in there - this is very treatable. You'll likely die of something else - not this. PM if you wish. Here's what I did last week:
I can reply to the Orgovyx question. I am G9(59 yrs old) with a second recurrence showing up in a obturator pelvic lymphnode. Here was my experience with Orgovyx. Just grin and bear it to get through it. I was on Orgovyx for 4 mos.
Considerable fatigue but mitigated by hitting the gym with lifting as heavy weight as possible with lower reps due to decreased stamina. Just need to force yourself to get to gym! I am a runner also. The running faded considerably while on Orgovyx. My pace slowed an additional 3 mins/mile and stopped 6 times on a 3 mile run. I could not run any further than 3 miles due to decreased stamina. Prior to Orgovyx no problem running 3 miles without stopping. Point being lower hemoglobin and less stamina due to lowered testosterone.
Other side effects: intense hot flashes sometimes 15 a day and 10 at night, significant disrupted sleep from the hot flashes, lucky to get 4 hrs of sleep an evening, emotional swings from depression to anger, voracious appetite(gained 15 pounds), increased Blood sugar 15 pts, no libido, no erections, neuropathy in hands and feet at night, extremely dry skin and brain fog. I am sure I missed a few others🙂.
1 month after stopping Orgovyx much improved. Testosterone increased to 87 from a low of <3 to 87(I only have one testicle which may attribute to a lower testosterone recovery). Now I am gaining strength in the gym, running is improving slowly and no emotional swings. Still combatting the hot flashes.
Everyone responds differently to Orgovyx and Lupron. Many say the better fit you are the better experience with less severe side effects. Not in my case! I am extremely fit but struggled greatly. I am very much “mind over matter”. The Orgovyx journey was a real challenge. I also worked through the entire journey which helped to get through it.
Thanks so much to all who replied. My urologist is a local guy in Charlotte. He went to Duke Medical School and knows the docs up there and insists I would get the same quality of care and doc experience locally. I am debating whether to seek a second opinion at Duke pending the outcome of whatever scans I can get done along with the Decipher test results.
Those of you who maintained a high dose exercise regimen while going through ADT and radiation are truly inspirational.
I should have a much better idea of where I am at in a few weeks. Best wishes and good luck to all of you!
The FDA approved PSMA PET scan this last year for folks prior to primary care and prior to diagnosis of metastatic cancer - the former requirement. Also, we now have a wonderful new option to the Gallium 64 scan agent: Pylarify. Works as well as doesn't require the PET operation to have a linear accelerator, which now makes the process much more widely available and cheaper. With a high GL score, you want this to preclude the surgery option if there is a better than 50% chance that you already have microscopic excursion (as I did) and will need ADT and RT anyway. Fight for the PSMA!
My experience with Orgovyx has been tolerable. Hot flashes but not severe and not as frequent compared with what I've heard with Lupron. Like most who go through testosterone suppression, I've experienced loss of libido, ED and anorgasmia. I take daily cialis to maintain blood flow and injections to offset loss of nocturnal erections. Very diligent with excercise especially resistance training with the help of a great trainer. This has helped me avoid fatigue side effects. Slight rise in blood glucose so going with a mediterranean diet and close watch on carbs helps keep that in check.
Retiring, Moving, divorced and PC. You’ve gone all in.
There are warriors here that are much more knowledgeable and experienced than me; but I found that I could get a couple hours of cardio each day and make many new friends playing Pickleball. By nature, I am not a joiner, so getting involved with a group “dinking” a plastic ball seemed crazy.
I tried it, made a new (now old) friend the first day; and, now I have about 25 friends that are involved in my life and rooting me on in my battle.
Retirement can still be fun, you can make new friends and you get some exercise. Is it the same as hiring a trainer and doing 4 days a week of lifting in the gym? No, but PB is saving my sanity, keeping my weight down and I bought some dumbbells that I workout with daily. Problem solved!
My best to you! There are may ways to fight this battle
Lupron is a bear, but increases longevity after radiation. Many drs insist that you exercise to build strength as lupron does a job on muscle mass. Lupron give you hot flashes, creates a need for naps, weight gain, and mood swings (think SSRIs to combat). But it also increase your life expectancy. Do it for a year -talk with a radio a oncologist about it
Hey Scutt (love that movie!). I was 65 when mine was discovered, also Gleason 4+4 8. I had a PSMA scan 2 years ago and BS covered it. I get another in two days and it has been pre-approved. Have your doc’s office check into it so you’ll know ahead of time.
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