Living with Prostate Cancer: Meet others & introduce yourself

Bob: 2 1/2 mos (4 mos rx'd) on Orgovyx with modest side effects. Had some "wozziness" or felt a bit "off", particularly the 1st couple of weeks. Be wary of falling early on, if you have this side effect. I did not fall, but others have. And tolerance to any ADT seems to be individual.
Good luck.

Ed: Choices are individual, and I wish you well with yours.
I favor treatment. My MRI suggested cancer contained within prostate capsule. But it is not a "hard" capsule, and after prostatectomy Aug 2022 at age 72, which I hoped might be curative, cancer cells were found outside (EPE) and .19 PSA.
Today I should finish 37 radiation therapy txs. Also midway through 4 mos ADT Orgovyx.
It seems that everyone's cancer progresses, and if that is true, treating sooner rather than later makes sense to me.
My recovery from surgery went very well. Others have successfully completed ADT (hormone deprivation therapy) together with radiation.
Side effects have been significant for some men, and not for others.
Best guidance and treatment are from experienced surgeon's and oncologists, and may include seeking a center of excellence for diagnosis and/or treatment.
And you make the choices that you are most comfortable with making, including active surveillance.
Many suggest Dr Walsh's book Surviving Prostate Cancer and PCF.org free patient guide.
Best wishes for success.

My name is Bob. I was diagnosed with PC in May 2019, 2 lesions, Gleason 6. Started active surveillance with Johns Hopkins in Baltimore. Recently I had another biopsy in March 2023, a couple more Gleason 6 lesions but one Gleason 7, 3+4. My urologist recommended radiation with Proton Therapy. After a Decipher exam of the biopsy cores, I was told my genome test revealed high risk of metastasis, even though only Gleason 7. I was then put on hormone therapy with Orgovyx, which I started last Saturday, March 29 for 4 months. I also started my Proton therapy yesterday which will be 28 sessions.
My PSA was never over 8, usually between 5-8, which I had checked every 6 months while on active surveillance.
So I’m new to the PC game, haven’t experienced any side effects….yet.
I’ll keep this forum advised as to my progress.

I went through the usual procedures: PSA test, DRE, biopsy, diagnosed with PC, Gleason 3+4. Prior to surgery, doctor ordered an MRI. He said since the MRI showed the tumor contained within the prostate he would attempt to save both nerve bundles. He was successful! 😁 However, post-operative biopsy showed microscopic, focal EPE, meaning the cancer got outside the outer layer of the gland but the MRI couldn't see it. With the EPE, along with positive margin, Uro said 70% chance of recurrence. Oncologist said he believes my cancer will come back "someday." Not wanting to worry anyone, just let you know the cancer can get outside the prostate undetected by MRI. (Two years post-op, my PSA remains undetectable.)

Thank you for you response. I will take my chances, and will just watch.

Ed, I am in the same boat as you, diagnosed two years ago, Gleason 7, confined to prostate per MRI. (former) urologist recommended prostate removal or radiation. I began researching minimally invasive treatments and really liked HIFU. I also have an enlarged prostate so that makes HIFU a little problematic so now I am looking into laser therapy, specifically the new ECHO LASER 4. Nothing set up as of yet. BTW, here is an interesting study that concludes that an enlarged prostate can be protective against cancer growing and/or spreading: https://www.pnas.org/doi/full/10.1073/pnas.1815735116

Hip, I am a new participant in this group, and a relatively new prostate cancer patient. I was initially diagnosed with benign hyperplasia, it was not until 8 months later and a change in medical providers that the cancer was diagnosed. Gleason score and 9 and metastasis. I have started on Lupron and Yonsa in January and chemo in February. Round three of chemo is this Thursday. I am now having difficulty getting a refill of the Yonsa. I find that the pharmacies are out of Yonsa stock. Have tried Express Scripts, initially mandated by Tricare, and now Walgreens to be out with no estimate of availability date. Does anyone know the situation with Yonsa supply and a possible source? I will appreciate any and all feedback and guidance.

Hi, my name is Ed. I diagnosed with Intermediate, Gleason 7 Prostate cancer, just a few month ago.
Despite my doctor's suggestion to get radiation treatment, I decided just to watch my cancer's development for now. It is still localized in the prostate, and I honestly don't know for how long it will stay there. I red a lot about horrible side effects if I decide to treat my cancer, and therefore i decided not to do anything about treatment. Maybe just pain therapy, if I won't be able to bare the pain. Any suggestions?

imworried64: It is a shock and once you grieve a bit, then you can work on your solutions.

They tried meds for an infection for me first but that did not work. PSA 20.2.
Your blood test for your PSA level is an important step. Then, your Urologist may want to do a prostate MRI. Then perhaps a biopsy (fusion biopsy would be my choice).

Here is a list of items to think about:
Nccn.org
Many doctors follow their guidelines, and it is there for doctors and patients

Decipherbio.com
If you have a biopsy, they take a slice of the biopsy which helps evaluate aggressiveness and modes of treatments

Viewray.com
MRI/Radiation machine combination unit. Tight restrictions on healthy tissue exposure
Mevian.com

Proton therapy radiation machine
Globalroboticsinsititute.com

A doctor I looked into when I was considering prostate removal in Celebration Fl.
PCRI.org
The Prostate Cancer Research Institute helps men and caregivers research their prostate cancer treatment options

This stuff can seem overwhelming. There are grey areas. Hang in there. Take one step at a time and always get back up opinions from your doctors. You are part of the decision making team. Work with them so you end up with the best quality of life you can get.

Hello ImWorried64 here.

This is so hard for me. 2 yrs ago I started having problems urinating, not being able to hold my bladder,
I mentioned this to my primary care Dr. He said my prostrate was huge. Prescribed some meds and I was off . The worked almost a year later after being in a accident the EMTs confirmed my identity by asking if I had prostrate cancer . I was in shock.i gave up on life and was willing to accept my date.
I had a change of mind. I'm a grandfather now. I ask this where do I begin. I fear I'm not to late.