Hi All,
Question, doctor is suggesting hormone therapy along with proton therapy (28 treatments of radiation) my gleason score went from 3+3 to 4+3 last year and psa doubled from 10 to 20. I tried to get in to this study to determine the genetics of tumor but they said tumor sample was bad.
should i have the hormone therapy for 6 months?
Thank you all and pray every day that all of us has the Light of GOD shine thru us and shine like the sun that HE made!
That's what they were doing to see if I needed the hormones or not but the piece or pieces could not be determined
You should get the Artera AI Prostate Test done on your pathology slides. They can predict if you will benefit from ADT or not.
Absolutely. 6 months of ADT will radiosensitize the cancer and increase your likelihood of a cure. 6 months of ADT is short and if you exercise likely to not be too bad.
I would tell you going in that ANYone can deal with 6 months ADT, regardless of how bad the SEs are. Use Orgovyz, and you'll feel good again just a few weeks after you stop.
Yep, especially with the transition in Gleason score
Thank you ALL for you responses ❤️
I had 4 months ADT. Orgovyx, along with 28 sessions of radiation. Same Gleason score, PSA of 8. Side effects not too bad, hot flashes were the worst. Seems to be worth the trouble. 6 weeks after ending ADT my Testosterone back to 565, I'm 64 years old, hot flashes almost gone. First PSA post treatment is .6. My team is happy with that number.
If you have HIFU you won't need hormone "therapy"
I had proton and 6 months of Orgovyx. I agree with virtually every response here. If you’re prone to weight gain, get extra strict on diet and workout. Also, you may have no interest in sex after a month or 2, but I would urge ‘using it’ as often as you can. As to Proton radiation, anyone have a handle on how long after PT that SEs ‘stabilize’ or normalize?
New standard of care is quickly changing… Combination of hormone therapy with radiation is showing great results!
open.substack.com/pub/proto...
I guess I should comment on what this link is about - it's about high-risk PCa and ADT after doing high-dose radiation therapy.
The author (who is a radiation oncologist) makes the point that the current "standard of care", radiation, adjunctive ADT extended into a total of 18-33 months of ADT is based on studies using treatments from decades ago, and he proposes those studies are badly out of date. He brings in data that he says shows how superior current radiation treatment is to surgery (primarily based on recurrence rates) and questions the need for long-term ADT.
It's a very interesting read, and I do believe I've mentioned more than a few times that doing current treatment based on studies on obsolete modes of treatment makes no sense.
Good read. Not too long and fairly easy to understand what he's saying.
Funny - I posted this also.., an excellent argument for less ADT..
My PCa symptoms and readings were similar to yours but my highest PSA was 13 (other readings were under 10 and I had a large prostate) and my highest Gleason was 3+4. My decipher was mid-risk range and there were no mets via PSMA pet scan. I had 5 sessions of protons and 6 months of Lupron depot (Elegard). I have been off Lupron for almost a year and only just now am seeing some of the worst ADT side effects (joint and muscle pain and muscle atrophy) go away. I thankfully have regained my testosterone level at the age of 78 years and my PSA remains almost undetectable. The fatigue and night sweats disappeared shortly after I stopped ADT. I have lifted weights religiously for my upper body during this whole “adventure” but wished maybe I had done more especially for my leg muscles. I hiked a lot in the mountains here around Albuquerque but wished I had done more weight training with my legs because my quads and back muscles really atrophied (even with hiking). One of the worst side effects was developing sciatica a few months ago. But I am recovering from that now after several months of physical therapy and gaining back my testosterone level. So far (knock on wood) I have had no bowel or urine incontinence from the RT. I had the Space-oar inserted to protect my rectum and also they (Mayo Clinic in Phoenix) put a balloon in my rectum during each RT session to stabilize the bowel in order to prevent movement from gas bubbles. I remember walking into the radiation room for my first RT session. There were about 5 people there in the room with one very attractive woman in the corner by the table who was doing something and it appeared that she did not want me to see what she was doing. I looked at her and smiled saying “Are you the balloon person?”. Everyone in the room burst out laughing. I will never forget that moment. Usually (according to many members of my local PC support group, they do the Space-oar OR the balloon but not both. I am optimistic but I guess it will be a few more years before I can safely say the protons did not fry my rectum or my urethra. I am doing well especially compared to many on this website but I know that everything can change in the future. I hope going into detail with my personal experience can help others to make these important decisions with the caveat that each person’s journey is unique and can be very different. In short, I am glad I had the 6 months of ADT with proton RT. I am also glad that they administered it via depot because I might have discontinued it after about 2 months in because of the bad side effects.
Hello, Sciaticaman.
I'm in Albuquerque, too (Tijeras). I'm getting ready to do SBRT, hopefully with a SpacerOAR or Barrigel spacer. I also have chronic low back pain. We have a lot in common!
Did you use any doctors in Albuquerque?
Bob
Bob, I had an MRI done at Univ of NM (Tom Schroerder) in about 2021. He sent me to the Mayo Clinic in Phoenix where I could get a fusion biopsy (where they take cores at the most likely spots in the prostate guided by the MRI). At that time the Univ did not offer fusion biopsies. So at Mayo my biopsy surgeon was Dr. Tyson. He performed another fusion biopsy in 2022 and found Gleason 7 (3+4). At that time he recommended radiation because, as he said, “you can still have sex and can urinate”. Apparently, with surgery there is a higher risk of urinary incontinence and impotence than with radiation. Anyway, when a surgeon suggests radiation in stead of surgery, that meant something to me. He sent me to Dr. Rigwema who is one of the radiation oncologists at Mayo. In the meantime I discussed the question of surgery versus radiation with several others (someone at the Univ of Calif at San Francisco, the prostate cancer center director at Walter Reed and Dr. Franklin at the New Mex Cancer Center). Dr. Franklin spent a lot of time with me and he prescribed a PSMA PET which I received through his Center. It showed no spread outside the prostate capsule. All of these doctors helped me with my decision to get radiation. Mayo offers proton radiation (instead of xrays). It is the closest place offering protons but I do not necessarily think protons are any better than conventional radiation. Maybe protons are demonstrably better for some brain tumors but not necessarily for prostste cancer. Anyway I got 5 sessions of proton radiation at Mayo about one and a half years ago. My post treatment followup mostly via Zoom phone calls has been with Mayo too. I was on Lupron ADT for 6 months. You should come to the Prostate Cancer Support Group meetings. We meet twice a month on Saturdays at the Bear Canyon Senior Center. The conversations are not always depressing. Actually they are usually upbeat and even humorous at times. There is a lot of bonding at the meetings. I wish you the best with whatever health issues you may be coping with. Merton
Hi, Merton.
It's nice to meet another person in Albuquerque. Yes, I should come to your next meeting. I'm sure it's an interesting group. I did listen to a lecture last month on Tulsa Pro that was informative.
Thank you for sharing your story. I just had a meeting with Dr. Shroeder last week. Boy, he's a smart, energetic, and funny guy! My wife and I liked him very much. My urologist is Dr. Shah, and my medical oncologist is Dr. Khatib. All very good people.
I looked into going to Mayo in Phoenix, but they don't take my insurance (UHC Medicare Advantage through Sandia National Laboratories). I'm probably going to do SBRT at the UNM Cancer Center with Dr. Schroeder on their Elekta Versa HD machine. I'm still considering MD Anderson in Houston or UCLA (Dr. Kishan), though.
What was your PIRADS score (MRI)?
How did you do on the Lupron?
Bob
Hi, Merton.
Do you still have back pain? Who's your back doctor?
I'm hoping to get low back fusion surgery by Dr. Otero-Lopez at NM Orthopedics in the next 1-3 months.
Bob
Bob,
I may have prematurely sent you a response just now before I completed my message. Anyway I seemed to have lost that message in the ethernet somewhere. I just wanted to finish by saying I liked everything about Dr. Schoerder including his sense of humor. That is, until he suggested that if doctors did not tell patients about all the side effects that Lupron might give you, then no one would have side effects. I suspect that his comment was an attempt at humor but it did not go over well. There were many audible boos from the audience when he said that. It is true that some people have no noticeable side effects but I think they are by far the exceptions. I hope that I have no permanent side effects and I hope I will not have to go back on that drug. Merton
I think he was trying to be humorous. He spent 1.5 hours with me, which I really appreciated.
I'm researching alternatives to Lupron. There are many out there that don't have the bad side effects of Lupron/ADT.
I'm curious to hear about your back problems...
Bob
Bob,
Yes he was being funny but when you are talking to a room full of people on Lupron, it did not go over well. I had piriformis syndrome several years ago. Way before my PCa diagnosis. I was riding a bike alot preparing to ride across the US. I twisted my back gardening. That started the sciatica. I got rid of it after about 3 months of streching and other exercises. Well apparently when I went on Lupton my piriformis ruptured again because some of the muscles in my back that protect the piriformis atrophied. So I have been stretching and exercising again and am getting better every day. My advice is that if you go on Lupron, exercise with weights all of your muscles including your back muscles. But it sounds like your back problem may be something else. Disk problem? Merton
Glad to hear that your sciatica disappeared.
I've had 4 back surgeries for degenerative disc disease and stenosis. Fused L3-4-5, but now L2 has gone bad 10 years later. I'll get a intervertebral spacer and fusion from L2-L3, hopefully in the next month or two. The adjacent joint disease is similar to biochemical recurrence in prostate cancer...both develop over many years.
Bob
BCF after 9 years post proton therapy
Hormone therapy after salvage rt
12 months hormone therapy done.
Urethral Strictures...TURP/PCa/Proton 
