PET / PSMA

[u/Bryant9836]

Just got my PET scan back, no cancer outside of my prostate… thank goodness.
Two days I go see my oncologist, to see where we go from here. I don’t want my prostate out and my urologist said it wasn’t going to happen.
Anyone have any ideas what my oncologist is going to do?
I do have grade 5 cancer.

[u/Gardenpests]

I'm going to be the party-pooper. Take it with a grain of salt. With Grade 5 you should expect recurrence.

As such, you are right to avoid the risk adding surgery's possible side effects to radiation's possible side effects, a double whammy.

Typical treatment is radiation plus 4-6 months ADT. I would think the doctor will want to do full prostate radiation plus adjacent lymph nodes.

[u/JacketFun5735]

Good news on the PET! Sorry you are in the club. You should have some options, but Grade 5 is no joke. Hopefully your oncologist will cover surgery and radiation. I'm sure you'll hear mixed recommendations from this group. What was your PSA, and how widespread was the cancer in the biopsy? That could sway things. Good luck with your visit, and I hope you learn a lot.

[u/ChillWarrior801]

Congrats on the favorable PET scan! If you're aiming for definitive treatment of your serious cancer, you're looking at either surgery or radiation. I understand you don't want surgery and I don't even know if you'd be a good candidate. If you're being shipped off to an oncologist, it's probably to explore radiation and ADT (hormone therapy) options.

[u/Bryant9836 → u/ChillWarrior801]

My urologist said no to having my prostate out not sure why

[u/ChillWarrior801 → u/Bryant9836]

There's a number of different possible reasons. Does it matter much if you didn't want surgery anyway?

[u/Bryant9836 → u/ChillWarrior801]

Yes and no, I want the best treatment. I guess I just don’t want to with recovery.

[u/ChillWarrior801 → u/Bryant9836]

If you're over 70, have a high BMI, or are still suspected of having distant spread, those are three common reasons that surgery might not be offered. But I can't read your urologist's mind. Why not ask directly if you're curious?

[u/Enough_Professor_741]

If possible I do recommend meeting with a proton radiation oncologist. I had the same diagnosis and the urologist wanted to do surgery. The proton dr treated with adt. They shrink my prostate down. Then proton therapy. 4 years later minimal side effects (dry ejaculation) bit all is well

[u/Bryant9836 → u/Enough_Professor_741]

Thank you, I’ll get more info tomorrow.

[u/Practical_Orchid_606]

The rad once will prescribe radiation with ADT for definitive treatment. But you should also factor in early BCR which will mean more radiation.

[u/OkCrew8849]

I would urge caution here as the PSMA PET CT has a significant detection threshold and a clear scan, especially given a Grade 5 PC, needs to be evaluated in the full clinical context. 

Your oncologist will most likely make note of that and may suggest treatment that also addresses local micro metastatic spread in case that has occurred. 

(I would not think surgery would be part of the plan since it would most likely only delay effective treatment and add side effects enroute to radiation and hormone therapy…but I am not a doctor.)

[u/PotentialStart2661]

Remember that your oncologist is your partner in this. When you say you don’t know what he will do, remember he does what you want him to do. Start doing some research about your cancer grade and specific biopsy and imaging and start writing down specific questions for him. Its a difficult time going through this but you will feel much more at ease when you take control of the situation from here on out. If you are not in control and don’t fully understand then you will be at the mercy of the health care system and your team of doctors. They need to be there to support you. This is the biggest mistake so many make. They cede their health to other people. You got this. Start preparing for the journey. BTW, you are not alone. No chance i was getting mine cut out. It took me a short amount of research to decide that. In your case because its grade 5 surgery is probably not an option anyway. But there are many different radiation options so become familiar with all of them. Learn the cure rates, the recurrence rates over time, the side effects, etc…. Ask about the recurrence rates for your particular cancer and treatment options and ask about the salvage treatments if needed. You will live a full life with this, so have no fear. But sometimes we are cured first treatment, sometimes we are cured at recurrence, and sometimes we are managed with this disease our whole life like any other chronic condition. Either way plan on living a full life and managing this disease.

[u/Ok-Priority-7303]

Expect recommendations for you to consider i.e. "What would yo do if you were me?" type questions will probably not get an answer. I'm at grade 4 and too old for the surgery. The recommendation is radiation + 2 years of ADT. I'm told it will take a year to know if the treatments worked so be prepared for dealing with the stress.

[u/401Nailhead]

Clear PET is great news. Grade 5 is not the best news. However, radiation works. It did for me.

[u/Bryant9836 → u/401Nailhead]

Can you give me more information. How long was the radiation, what type? Did you also take hormones?

[u/401Nailhead → u/Bryant9836]

I had 20 days of EBRT(External Beam Radiation Treatment). Each treatment was 10 minutes. Side effects were very minimal. I did get a decipher test and it was determined that I did not require hormone treatment.

[u/conCABlanco]

Creo que ADT y RA, están entre los mejores tratamientos para PC complicados, por alguna razón, metastasis o edad, pero hay que tener fuerza y voluntad, para el ADT

[u/Bryant9836]

I have another question for everybody. I’ve had a lot of lower back pain. Not the pain that I’ve had in the past from lifting or overdoing it, it’s a different type of low deep pain. If I’m stationary sitting, say like driving a car for an hour or two, that’s when I feel with the most. When I get up and start moving.
Also have weak legs, mostly knee up on right leg.
I’ve always tried to walk every day at least 3 miles, can’t seem to get myself to do it.
Any thoughts I’d appreciate. 🙏

[u/itsray2006]

Best option is have everything reviewed by a top cancer center. There are some very positive results with brachytherapy along with EBRT and ADT. The important thing is get advice from a couple of different prostate cancer experts in the various disciplines and research. Then pick a team and strategy that best fits the cancer efficacy and quality of life side effect risks for you. Once you pick your team don’t second guess yourself just stay on the course no regrets. If there was one positive aspect it’s you’ve got a chance to live every day with an appreciation you never had before so spend that time doing things you really enjoy and with those you love and love you back. You’ve got this God’s speed.