Hi all.Need some guidance from your experiences.
Gleason 9, PCA into pelvis.
Just finished 6 sessions of doxetaxel
Last PSA was 0.21
I've been offered and recommended radiotherapy 6 sessions (1 a week) specifically to the prostate.
I'm 50.... I don't like the sound of some of side effects.
Has any one on here had radiotherapy for similar reason???
Thanks
Are you oligometastatic? If so, it will increase your survival:
prostatecancer.news/2018/09...
What side effects are you concerned about?
My diagnosis says 2 Mets in pelvis, and prostate tumour, so think that's oligometastic.But....I really think they haven't tested/looked fully?(I had MRI of pelvis area and a bone scan?)
The radiation is CT planning type, the possible Side effects seem to be
Impotence
Anal passage burn
Ureatha burn
Urination problems and discomfort
Bleeding?
The link was for what looked like triplet therapy?
Sorry, wrong link. I meant this one:
prostatecancer.news/2018/09...
"But....I really think they haven't tested/looked fully?(I had MRI of pelvis area and a bone scan?)" That is precisely what they should be using, because it was what was used in the STAMPEDE trial that found the benefit.
" the possible Side effects seem to be:...." Yes those are all possible, but are not likely. Here are the odds of side effects:
prostatecancer.news/2016/08...
Thank you.It's all about odds and numbers.
I've looked over the articles and some others.
It can be like holding onto the escalator handrail, but on the wrong side....
The higher you go, the harder you need grip on.....
Yes- every treatment and drug has possible side effects. Most of us ignore the less likely ones. Yes, tylenol can cause liver damage, but who wouldn't take if needed for fever or headache?
Mrtroxely,
Where do you live? If you can get to the Roberts Proton Treatment Center at the UPenn in Philly for a consult with Dr. Neta Vapiwala in the UPenn radiation department, I suggest that you do it. She will probably order a PSMA PET CT scan and then suggest the form of radiation that would be best for your treatment. UPenn offers IMRT, SMRT and PBT. I used PBT for my own SRT to minimize radiation side effects. It worked nicely, and Dr. Vapiwala is a wise RO. This is as specific a recommendation as I can offer.
Live in UK.I get what I'm given regards treatments
Our choices are.
Don't take treatment offered by doctor or pay my self.
I've asked for pmsa pet scans!!! She says waiting lists to long and it wouldn't change her course treatment....
👍
Reading your notes, your situation seems somewhat similar to mine. I have had the 6 high dose radiotherapy sessions in 2021. My PSA fell further after the radiotherapy. I'm very glad I had it. My side effects were minimal but I'll describe them here. In the 48 hours after each treatment, I had a constant urge to go to the toilet and a strange buzzing sensation in my prostate area. The doctors told me that I was "imagining" it but it seemed one hell of a coincidence. From the second session onwards, I was relaxed. No nerves. But the side effects passed and I recovered quickly. I had two days off work after each session and then returned to work. I think I had some burning to the rectum but I never had this investigated. It seems to have cleared up now. To state the obvious, I was never able to check myself.
I would recommend you go ahead. Zapping the original tumour is a good idea. I am personally pleased that I was offered the treatment. As you may know, they didn't used to offer it to us guys who were metastatic. Do it. You won't regret it.
Thank you.👍
I was diagnosed with a Gleason 9 prostate cancer in 2012. It had regionally metastasized to my pelvic lymph nodes and bladder. (I had a urinary obstruction from the bladder tumor and had kidney stents inserted for about 8 months.) I was on ADT (Lupron and Casodex) for 27 months and had radiation therapy. The result was much better than I or my doctors anticipated. I have been in remission ever since I stopped ADT in October 2014. I found the radiation pretty tolerable. There were some reasonably mild bowel side effects (occasional bouts of gas, mucus and frequent stools) which disappeared over time. I also experienced erectile disfunction, which I assume was due to some combination of the radiation therapy and ADT.
WowThank you
Over 10 years with pca Gleason 9.
Think your first person I've heard from in this situation
I'll show this my partner, it may alter the pert we get...
my husband is over 5 years in with Gleason 9, works full time, and doing great. Just addresses issues if/when they come up. Full check ups with scans every 3 months.
Did he have radio therapy
Yes he had Mets in pelvis bones and a few lymph nodes. Over the past 5 years he’s had surgery, radiation, a total of 1.5 years adt (one course 6 months, the other a year), targeted sbrt for bone Mets, cryo on a lymph node. For 3.5 years he was off all systemic treatment.
His doctors say to look at his disease as chronic. So regular checkups including scans are imperative.
You have been on this site for a while now, sir. You have advanced and aggressive cancer in your prostate bed and pelvis. You need full field radiation to prostate and full pelvic LN fields. Not just spot SBRT. Weigh the side effect of (probable ultimate) slow painful death against the possibility of cure. Many workarounds if impotency from RT. But you have to be alive to have a sex life. Please get on with it, and make sure the planned RT is optimal and not minimal.
This is a timely post for me as I too have been recommended to have 6 x weekly RT to the pelvic area. In my case it will include not only the prostate but also a lymph node that has grown in size and a met on my pelvic bone which gives me some pain at times. However unlike you I'm not oligometastatic as I have several small mets to my ribs and spine but stil my MO recommends to have this RT.
Like you I'm concerned by the possible SEs but I'm keen to get the lymph and pelvic bone met zapped plus I feel there is some benefit in debulking the prostate - if only to reduce my ongoing need to urinate frequently especially overnight. So unless someone gives a strong reason why I shouldn't do it, I'll be having the pre-scan on Thursday and probably start the RT a week or so after that.
BTW, I had a PSMA PET scan a couple of weeks ago that showed avid mets inside and outside the pelvis but still my MO is recommending the pelvic RT as the next step.
Three years ago I had similar diagnosis. Advanced PC (Gleasons 9) that had gone beyond prostate to 6 bone met spots also. I had chemo, radiation (cyberknife) to bone mets and prostate and went on ADT for 2 years. Radiation was fine for me with little side effects to date. Ensure you do pelvic floor exercises to reduce issues. Most side effects were from ADT. Went off ADT 1 year ago for "holiday" and most side effect issues then reduced. Recently had PSMA PET that showed 2 more small bone mets that I have since had radiated by cyberknife again. Good thing was that scan showed previously radiated mets had no PSMA activity probably indicating that radiation appears to have worked.
Currently PSA is down, still off ADT and all is good.
Good luck with it.
Cyberknife treatment is recommended for Stage 3 OR below Patients in India. Are you on stage 3 sir ?
Hi,
I am from Australia. Metastatic cancer on the bones is regarded as Stage 4 here.
My diagnosis was one year ago Feb 2022 at age 49. Low burden Gleason 9, PSA 16.. Oligometastatic with mets on pelvic bone, rib and scapula. All identified with PSMA PET CT scan. Treated with 3 monthly Prostap injections, had docetaxel chemo between April and July 2022 and in November 2022 had VMAT RT to prostate for 4 weeks and SABR RT to the 3 bone mets. PSA is now 0.09. I had a SpaceOAR fitted prior to RT which presumably lessened some SE. Side effects from RT included some fatigue and bowel issues for last week of treatment and two weeks after but all fine since. I have another PSMA pet ct scan planned in 3 months so will see how effective it has been. I am located in UK.
In 2018 my situation was somewhat similar only worse. I received ADT, 6 cycles of docetaxel, with initiation of Abiraterone and prednisone before my last cycle of docetaxel. I then received radiation to the prostate and pelvis at Fred Hutchinson/SCCA. More details of my course since that time are in my profile. On thing in retrospect I would have done upon completion of the above protocol would have been going overseas to get a PSMA PET/CT.
You are similar to me. I’m 52 also with Gleason 9 with lymph node mets and one bone met. Some very small lymph node mets were picked up on PSMA only. (I’m oligometastatic)
I did triplet therapy and finished chemo end of October. Currently on darolutamide and Eligard 3 month.
I had radiation (IMRT, 28 sessions) to prostate / SV, all pelvic lymph nodes and the one bone met. Side effects were not that bad. Mainly nausea and some GI issues. I was still able to stay active and side effects were easily managed. I don’t regret getting radiation at all. My RO said (based on how my PSA does), if needed, he can zap any other Mets not taken care of by the chemo and ADT.
I’d definitely do radiation again if I was doing it over.
sorry to hear your situation but you’ve got plenty of hope. I was in similar situation. Did the ADT and 6 doses of chemo chemo. Also stumbled on to the Joe Tippens protocol. Please watch his story at Get Busy Living. Com I am cancer free. Fenbendozol is the substance that is very effective on this and other forms of cancer, I’m a shining example. It’s no joke. Throw everything you’ve got at cancer. You won’t be sorry!
Wow.Your definitely a shining example.
Are you able put up a profile diagnosis and some detail
Would be good to see
Rectal hydrogel spacer for PCa radiotherapy
Hi
Experiencing a rash while on Leuprorelin (Prostap, Lutrate) hormone therapy. 
Duration for Salvage Radioteraphy after RP
