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

Also, his PSA levels prior to all of this were all in normal range. Age 67, PSA level once considered abnormal was 5.75 up from 4 and change. Primary doc was closely monitoring as he was on implanted testosterone.

My point is, his PSA levels never were very much a concern until they were. Most likely, aggressive cancer had been brewing for quite some time. No real other symptoms other than what he chalked up to be aging (more frequent urination, weaker stream).

It definitely sounds like you have a case of prostate cancer that needs to be treated further. The results of the PSMA PET scan are critical. If they find a lot of metastasis, then Chemo or Pluvicto Are usually what is needed.

Has he been put on ADT? He should also be on an ARSI with all of these problems. Those two drugs should stop the cancer from growing and keep it under control. You do seem to be in a good cancer care location. They could be waiting for the PSA results, But the standard of care is to get you on those drugs soon.

Where you are located UCLA could give you a good second opinion on treatment. They could make a lot of sense to go there and find out what they think should be done. The PSMA PET scan results would help to have before going for a second opinion. You should have them in a short time, and can then get a second opinion.

What you describe are multiple aggressive prostate cancer issues, Very few people have so many all at once. Yes, getting a PSA test six weeks after surgery is appropriate. For most people after surgery, the PSA drops to undetectable, I suspect It may not do this in this case, because of the aggressive nature of this prostate cancer. They may be waiting to start the drugs after the PSA test, Since the drugs would definitely bring the PSA down.

Prostate cancer normally grows very slowly so you definitely have time to get this treated.

@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

@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 thank you for your reply.

I agree that his PSA levels will show present even post RP.

Should he wait for any genetic testing to be done in addition to his PSMA results before starting/exploring these?

He is pretty absent in this process so it’s making it difficult for me to navigate since he shows no interest in caring.

@surftohealth88 thank you for your reply.

I am feeling more than frustrated with the care I feel he received post op. I was shocked to find out that we were only meeting with a NP for a very important post op visit. She very loosely glazed over the report, had a nurse remove his catheter, told us to make a 6 week appointment for PSA testing and that was that. I must say, I expected more from COH.

He also has been pretty much ignoring or refusing to take an initiative in this process. It’s been mostly left up to me. He seems upset and annoyed that I have been ferocious in my reading and trying to educate ourselves. I feel lost. I feel like we’re just out here trying to figure it out on our own.

We also weren’t given a proper staging of his disease which I think is disingenuous at best. I think had the post op appointment been with the doctor himself with real talk etc., he’d more likely be taking this more seriously.

I am going to request a hard copy of the PSMA scan results and get them into another doctor he has already had a consultation with at UCLA.

Thank you

@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.