New to the prostate cancer club

Hey buddy, You’ve been given the very best advice from some very knowledgeable people on the forum; and some good homework for you to do regarding your results.
I will just add that #1: This is serious and you need the very, very BEST team of doctors for treatment. This is your life and this is no time to f*** around. Travel if you must.
#2: Don’t assume ANY one doctor has all the answers; you need to get different points of view in order to make the best decision for treatment. And for
#3: Hope for the best but plan ahead for the worst; not all treatments are successful (no matter what a doc says) and you ALWAYS need a plan B. Always ask your specialist ,”And what if this doesn’t work?” You need to know this!
With your young age and high Gleason score you are likely to have a more aggressive cancer which may need to be treated in stages, so don’t despair if that is the case.
Please let us know of your progress - we are all here to help!!
Best,
Phil

I found out four years ago not only that I had prostate cancer, but that it had already moved to my spine. My life is different — side-effects from meds, radiation, and spinal compression have seen to that — but it's still wonderful.

Give yourself time to adjust, but also remember that there's light ahead with all the new treatments available these days.

@lanksta25

My Gleason was 10.2 and my Prostate Cancer was confined to the Prostate. I was treated in 2023 with five doses of radiation with the Mridian machine which is a radiation machine that has a built-in MRI versus fused image radiation machines. There are two built-in Mri machines out in the marketplace. One is the Mridian and the other is the elekta unity? To quote two Radiation oncologists, “what they can see they can treat” and if it is in real time, that is important.
My brother had a Gleason score of 6.5 and his cancer spread ferociously, unlike mine. You might want to take the decipher test, which doctors use for treatment to decide how aggressive the cancer is. The test uses material from your biopsy.

You might also want to get at least one second opinion from a radiation oncologist, which you can do as a telehealth as many of the centers of excellence will be able to access your images or if not, you will be able to email them to them.

@jeffmarc I agree 100% with Jeff's assessment and advice....particularly the importance of working with a Center of Excellence with a multidisciplinary approach to PC treatment

As others have said - welcome! But sorry you had to join our club.

You probably should get a genetic test of the biopsy cored tumor cells. That's routine at Mayo Clinic where I go. I have Gleason 9, but my genetic test (DECIPHER) showed low risk of metastasis - which was good to know.

These tests look at various markers in the tumor cells to determine their likelihood to spread. DECIPHER is the only one I am familiar with, but have hard others mentioned on this forum.

My biopsy was 11 months ago. Options were surgery or radiation, but the surgeon was not encouraging - probably because of my age (77) and comorbidities. So I chose proton beam radiation because it has a bit lower side effects than X-ray. There was quite a process getting ready for treatment, but then I had 28 treatments - every weekday for 28 days, and that part was easy and painless.

After that typical comes ADT - testosterone suppression - for some period of time. This is to help suppress any stray cancer cells that are planning a sneak attack of metastasis. For most people, ADT is not pleasant, but that varies a lot by individual.

Best wishes!

My husband had a somewhat similar diagnosis. It is really upsetting at first but things settle down (at least it did for us) after you have more information. And there is ALOT of information! Read my bio if you are interested in his journey. You have come to the right place for support.

@lanksta25, how did your appointment consult go? Did you decide on a treatment plan with your doctor? How are you doing?

@colleenyoung

Thanks for asking. I’m working through the process. PET scan came back with some metastasized areas in lymph nodes. Met with Oncology. Waiting on genetic testing to come back to determine next steps.

Likely course of treatment
ADT now.
Chemo asap.
Check and then consider radiation.
Surgery is not an option at this point.