PET/PSMA / Decipher test results back (0.69). Radiation/hormone now.

Is your seven Gleason a 4+3 or 3+4. It’s too bad they didn’t put you on ADT while waiting so long that would’ve stopped the cancer from growing and dropped your PSA to almost nothing.

If you need to do radiation next to the rectum, ask about getting a spacer gel that can protect your rectum from damage. Not all oncologist will do it but most will.

What type of radiation have they recommended? If the cancer has not spread beyond the prostate, you may be able to find a radiologist who will just use SBRT and five sessions will usually be equivalent to 30 or 40 IMRT sessions. Of course you can always do Brachytherapy, discuss with your oncologist whether you can use that with your cancer.

Sorry to hear of your diagnosis. While a spacer gel is a good idea, it is generally contraindicated where the cancer appears to be next to the rectum.
Radiation is usually a great treatment option, but at your young age surgery will likely be pushed. That may well be a good treatment as it leaves the radiation option open years down the road if necessary.

I was diagnosed in October of last year at age 68 with a 4+3 and a 3+3 lesion, PSMA PET indicated contained to prostate, Decipher was 0.86, PSA 7.8. I had a Barrigel space placed and completed 5 sessions of SBRT in December, and finished my 6 months of Orgovyx for ADT at the end of May. As of a month ago my PSA was 0.19. Only time will tell, but so far I am thrilled with my treatment option.

Stay Strong Brother, WE got this.

Welcome to the brotherhood no one wants to join. We’re here for you.

I am on my second go-round with prostate cancer. I can’t and won’t give medical advice, but I’d like to share a few thoughts based on my own experience which has been challenging. Due to the decisions I made when I first was diagnosed my opportunity to spend the rest of my life cancer free is far from certain.

I recommend that you don’t rush decision on your treatment. You’ve waited this long and another 30 days will not make a difference with your outlook. I rushed to judgment the first time I was diagnosed with prostate cancer, didn’t really think things through and chose a treatment that limited my options for further care when cancer returned.

I recommend that you purchase the book “surviving prostate cancer” fifth edition by Dr. Patrick Walsh. It’s under $20 on Amazon and it may be the best and most up-to-date resource on treating prostate cancer. Do not save money and buy the fourth edition. The fifth edition has the most up-to-date information and since prostate cancer treatment is evolving quickly it would be unwise to short change yourself.

Has your case been reviewed by a tumor board at a center of excellence where doctors representing different specialties such as radiation and surgery got to weigh in on what they thought was the best modality of treatment? I didn’t have that the first time around. I had a surgeon competing for my “business” and a radiologist competing for my “business”. I was treated like a customer, not a patient. When cancer returned in 2023 my case was reviewed by a tumor board, composed of radiology oncologists, surgeons, and medical oncologists. They put their heads together and told me what they believed would give me the best shot at a cure.
I felt far more comfortable, knowing that there was a consensus rather than only the opinion of a single individual. I hope you have had the same experience.

I highly recommend that before agreeing to any treatment, you ask the radiologist what Plan B is if Plan A fails. With rare exceptions, surgery is off the table along with more radiation to the affected area. That may only leave chemotherapy and some types of prostate cancer do not respond well or at all to chemotherapy.

I am not recommending anyone treatment over any other treatment. Treatment for pressed eight cancer is not a one size fits all solution. I’ve had radiation twice, surgery once, and I’m currently undergoing 24 months of ADT. I never expected that I would need all these different treatment modalities, but unfortunately, my case required all of them.

With that higher decipher score comes a higher risk that your cancer might return so you need to choose wisely.

Good luck on your journey.

I have begun ADT and am about to have high precision radiation to the prostate and ebrt to the left iliac node. My recurrent pc team reviewed my data and decided to do both radiation and ADT right away. (Still was months as things were put in place.)
6 years ago I had 4+3, 30% involved and bulging when i chose radiation. No symptoms at the time and only found because I was doing psa tests as it seemed like a good idea.
6 years later, now, my psa crept up and then started to accelerate. It wasn't a high number but the doubling time accelerated fast. It touched high risk. Because of that I went for a PSMA scan.
Psma scan and biopsy showed prostate and left iliac lymph node cancer and PNI. The doctors have decided both high precision radiation and ADT are needed. They say it's incurable but can be held down with this so that it won't kill me. It's good to have them conferring on it.
It's very surreal still. I've gotten over my anger about ED and drug effects and will have completed ultra hypofractionated radiation with spacer by the end of September. My psa is dropping fast on ADT so I'm grateful for that.
Just hoping for no continence issues. However, not doing this combo would likely put me on the less than 5 yrs plan and I'm not done yet!
Best wishes to all.

@greg52 sorry to hear about the decipher test results. If you have decided on radiation, I hope you will still consider the Mridian for treatment (or Elekta) especially since minimizing the exposure of your rectum and healthy tissue to radiation, given your cancer location, may become more important. You might want to check out the Mirage randomized study which you can google, which compares other types of radiation versus real time built in MRI guidance.

Not sure if you are using a gel spacer for rectum spacing just before radiation but now there are three kinds to choose from and that’s worth a discussion with your doctor. The latest, which is supposed to give you more room than spaceoar, which I was treated with, is bioprotect, but I do not know, how many success stories there are yet.

I certainly wish you the best of luck

I am puzzled by this response. The use of a spacer is to protect the rectum. He’s a quick explanation of why it’s used.

You'll get a rectal spacer called SpaceOAR™ hydrogel. It is a gel that's placed between your prostate and rectum to move your rectum away from your prostate. This protects your rectum from radiation and reduces some side effects of radiation therapy.

Where did you get the information that a spacer is not good to use when the cancer is in the prostate near the rectum?

Another great book for prostate cancer survivors is “the key to prostate cancer” by Marc Scholz. You’re probably are familiar with Mark Scholz, he leads the PCRI conferences and his addresses at PCRI are really enlightening.

You can listen to the things he has to say on YouTube, a real education in prostate cancer treatment.

I actually was going to have the SpaceOAR procedure before my radiation. But after the PET/PSMA stating,

"There is relatively focal increased Pylarify activity within the left inferior, posterolateral prostate gland, best appreciated on PET images 43-46 (SUV 5.6). This focus is in close proximity to the left anterior rectal wall, with invasion into the rectum difficult to entirely exclude."

My doc recommended against the SpaceOAR. Even though it sounded like a good extra precaution to take, he did not seem concerned with me NOT having the SpaceOAR as this type of cancer has been successfully treated for years without SpaceOAR with minimal to no impact to rectum (apparently) so I'm trusting him on that. And the fact that it is so close to the rectum with spread to the rectum not completely ruled out by the PET scan.
As a 53 year old, surgery does seem to be the traditional recommended treatment. But based on my research, and the fact that I really connected with the Oncology doc, it seems that the main reason more younger PC patients opt for surgery is based on the potential side effects of radiation "down the road". But with the modern and more accurate radiation methods, it is less of a concern. And a lot of people just want the cancer out and would rather come in one day and have it removed than come in for consecutive days of radiation over several days/weeks because they can't. For me, being semi-retired and caring for my senior parents who live in my home, going in Mon through Fri for 5 1/2 weeks to get a 30min radiation treatment in the morning will have minimal impact on my life.

Interesting story- it’s as if the RO says let the radiation hit the rectum since it might have cancer already, to heck with the Space oars. Radiation to the rectum side effects will occur in your future. Sounds like a no win situation either way you choose. Check with Mayo to see what they think… that’s what I would do. Take care my man. My prayers are with ya. Bruce

Hey Greg, it’s a bummer but welcome to the club. I am by no means an expert but here’s the one thing that really stands out to me. The PCa is SO CLOSE to the rectum that scans cannot show if it has invaded or not.
Wouldn’t it make sense to have a skilled, experienced surgeon go in and actually SEE if it has or hasn’t?? It is not so murky with robotic ultra precision and magnification. Whatever the outcome you would KNOW for sure. The idea that they are going to radiate the cancer and NOT injure the rectum (no spacer) seems impossible to me.
I had a recent consult at Sloan for salvage radiation 5 yrs after surgery ( scans clear) and my RO stressed the importance if having a clean rectum (enema) at the time of my simulation because any stool remnant would distort the area and not give him a clear picture of the spatial anatomy. In other words he might not kill some cancer cells that might be lurking OR he could fry the rectum and that would be very bad.
You are young so I understand your fear of the side effects of surgery and it is well founded. However, if PCa has already penetrated the rectal wall a GI surgeon scrubbing in could easily perform that part of the surgery and perhaps excise all of the cancer with no long term side effects to you. You might never need radiation or if you do, you wouldn’t be in this precarious ‘maybe it is/maybe it isn’t’ situation. This is just MY OPINION. Please get as much info as you can before you commit to anything - a GI consult should also be on the table. Best of Luck!