What to do? Post RP, Gleason 9, Prostate ductal adenocarcinoma

@jeffmarc thank you for the info on genetic testing. I will get that kit.

Yes, his mother died of colon cancer and his brother had a highly aggressive prostate cancer with RP + radiation. He ended up dying of a melanoma. I wonder if the melanoma was caused from the prostate cancer?

@sriddle1
No, just the PSMA pet results should be enough.

Get genetic testing here to find out if it could be a factor. Does anybody else in his family have cancer? You can get it here for free, takes 2 to 3 weeks to get the results and a genetic counselor will call. They will send you a kit that you return in the mail. They just have to spit in a tube and return it.

Prostatecancerpromise.org

Don’t check the box that you want to have your doctor involved or it will greatly delay the test.

If his absence is due to fear, let him know that the treatments that are available give people many years of progression free survival. I was diagnosed almost 16 years ago. I have BRCA2 a genetic problem that prevents my DNA from correcting errors, As a result my cancer keeps coming back. I’ve had surgery and radiation and it keeps reoccurring, but the drugs that are available today keep me alive and undetectable for a significant time. You would never know I had prostate cancer if you met me.

It is not time for him to throw in the towel, It is time to proactively pursue the treatments that are available.

I know people with Gleason nine that are still around 20 and 30 years later, After treatment. A few of them have been told by their doctors they only had three or five years to live and they just sort of laugh because they’ve lived almost double that time, and still have treatment available.

@sriddle1

Yes, there is a correlation between prostate cancer and melanoma, with a history of prostate cancer increasing the risk of developing melanoma, and a history of melanoma increasing the risk of prostate cancer. This association may be linked to shared risk factors, such as high levels of androgens, a class of hormones involved in both cancers.

The genetic problem I have, BRCA2, can cause both prostate cancer and melanoma, as well as a few other cancers like pancreatic and breast cancer. My grandfather died of pancreatic cancer and gave me BRCA2.

@jeffmarc thank you for the info on genetic testing. I will get that kit.

Yes, his mother died of colon cancer and his brother had a highly aggressive prostate cancer with RP + radiation. He ended up dying of a melanoma. I wonder if the melanoma was caused from the prostate cancer?

@jeffmarc also, thank you for the encouragement. It really means a lot to me.

Had your PC spread outside the prostate as well? What were your results before treatment?

@sriddle1
I was Diagnosed as a Gleason 3+4 almost 16 years ago. I had surgery and it was a 4+3 after examining my prostate. It kept coming back and I had salvage radiation 3.5 years after surgery.. Five years ago, I found out I was BRCA2 Which explains why it keeps coming back.

Three years ago, I had to have a metastasis zapped on my spine.

I have been castrate resistant for six years. Median survival once you become castrate resistant is two years, So I have exceeded the averages.

I have been undetectable for 23 months (get The 24th month blood test next week) while on Orgovyx and Nubeqa. I’ve been getting monthly blood tests for over eight years.

Before my current drugs, I was on Lupron and Zytiga for 2.5 years.

I have been on ADT for almost 8 years.

@sriddle1
Hi,
I am so sorry that your and your partner have to go through PC diagnosis. I understand your anguish since I am here also representing my husband.

At this point results of PSMA test are very important and with aggressive features of IDC and cribriform his Decipher test results would probably be very high. PSA for aggressive cancers often can be almost in a normal range, that was the case with my husband too. He had RP surgery about 10 weeks ago and his gleason score jumped from 7 unfavorable found in biopsy to 9 after complete pathology was done. Our urologist told us at the last meeting that aggressive cancers very often produce less PSA than gleason 7, which should be a cautionary tail to newly diagnosed or to people on AS and I do not know why that fact is not more discussed or more known.

Since your partner's cancer escaped the gland to lymph-nodes and to bladder neck and vesicles, it would be unusual that his PSA comes back undetectable and you should start exploring next steps that will be taken in near future - such as salvage radiation , ADT and possibly even chemotherapy.

If possible, go to Cancer Center of Excellence for a second opinion since your partner needs full supervision and care of a whole team of doctors and I do not understand why your hospital arranged the first post op with a nurse for a patient who has those agressive pathology findings : (.

This is all shocking, I know, just try to keep in mind that there are so many new and effective treatments available for every stage of this awful cancer and we here have many members that went through treatments with excellent results. You are doing great thing by doing your own research and trying to be informed and that is the best way to go forward ! Unfortunately that is the ONLY way since than one can demand AND get the best possible treatment with the best possible results.

Wishing you the best of luck and sending hugs < 3

@jeffmarc wow. That’s very interesting and good knowledge. When his brother was diagnosed two years ago, my partner never got too involved as far as asking questions etc. He always told me that it didn’t matter to him what kind, etc cancer his brother had and that he just didn’t want to deal with that. Now, it seems to make more sense to me on how he progressed to melanoma from PC. Fascinating and terrifying.