0.53 post prostatectomy

[BaronessVonChatNoir]

Asking on behalf of my brother Gerry who isn't computer literate. We live in Canada.

About this time last year, my brother had radiation, post prostatectomy. His numbers have been going up with each blood test. He just called and said his newest number is 0.53 and the oncologist told him that he can now be enrolled in a study I think it is for a PET scan. He told Gerry he also wants to do some kind of scan (MRI?) on his bones.

We're pretty worried here and I don't know how to comfort Gerry or what to say to reassure him, if anything. Obviously the cancer has come back but I'm still afraid.

[LearnAll]

Give Gerry this factual information that even if cancer is coming back...there are a lot of treatments to send it back. People with Metastatic cancer can live anywhere from 5 yrs to 10 years to even 20+ years (in some cases) with proper treatment .So this is not the end of the World .

[BaronessVonChatNoir in reply to LearnAll]

Thank you. I've no real idea if it has gone into the bone but we will learn more after he gets the test to find out.

[Tall_Allen]

Good idea to have a PET scan to see if any metastases are detectable. He probably has hormone therapy in his future. Read this:

menshealth.com/health/a2530...

[BaronessVonChatNoir in reply to Tall_Allen]

Yes, from what I've been reading he probably will have hormone therapy. Thanks for your reply, Tall Allen.

[Magnus1964]

The are plenty of treatments out there that can give him years if not decades of quality life. I have been around for 27 years after diagnosis.

[BaronessVonChatNoir in reply to Magnus1964]

27 years? Wonderful that you're doing so well! That is encouraging to me.

[Magnus1964 in reply to BaronessVonChatNoir]

I like to mention that to people to show that there can be many years of quality life after being diagnosed.

[GP24]

This is common situation Gerry is in. As far as I recall about 30% of the patients get a rising PSA value after surgery and radiation. In this case I recommend not to take any action before the PSA value gets above 2.0 ng/ml. So Gerry can wait for some time now and live without side effects from treatments. There is nothing that will make a difference regarding overall survival now. Frankly, in this forum we are all in a worse situation than Gerry and we intend to live for ten years or longer from now on. Prostate cancer usually grows slowly.

[BaronessVonChatNoir in reply to GP24]

Thanks. So his reading of 0.53 isn't as high as the 2.0ng/ml of course. This is a steep learning curve for my brother and me (I'm a gal) What I need are good questions to ask the oncologist in 2 weeks when he gets the bone scan. Gerry becomes really high anxiety and sort of blanks out things the doc says so that is why I'm trying to help. So far I can see him as a candidate for drug therapy but that will probably be discussed. We wonder why he wasn't offered drug therapy post radiation a year ago.

Last year after his radiation I sat with the oncologist and was reassured that his cancer was "within the margins" and so forth. So this newer development is a bit of a shocker but Gerry must be among the 30% that you mentioned. That is really helpful. I'm trying to put things into context and not get overwhelmed by it. There is so much to know. Thanks again.

[GP24 in reply to BaronessVonChatNoir]

A drug therapy causes significant side effects. So if the RO thinks the cancer has not spread he will not recommend drug therapy, i.e. ADT or hormone therapy. Very recent reports indicate that drug therapy after salvage radiation is just helpful for high-risk patients.

Please ask the doctor for the trial he mentioned. The bone scan is not a very sensitive method and there may be small metastases that go undetected. A PET scan is much more sensitive. Question is what to do if this detects metastases.

It is usually a good idea not to have the consultation alone. You may sit down with Gerry after that and take notes what you learned. Or extend the notes you made during the consultation. A few days later you will not be able to recall exactly what the doctor said.

[BaronessVonChatNoir in reply to GP24]

I see. Again, that info is very helpful and thank you ever so much.

Yes, he was told that he qualifies for the PET scan study.

[j-o-h-n]

Greetings BaronmessOneChatBore,

Not a petscan study.... It's a pet scan: It's like an MRI with stuff he has to drink (think of it like an X-ray)...

A positron emission tomography (PET) scan is an imaging test that helps reveal how your tissues and organs are functioning. A PET scan uses a radioactive drug (tracer) to show this activity. This scan can sometimes detect disease before it shows up on other imaging tests.

Tell your brother Gerry he has a alot of company here.... He probably will get hormone therapy (like a woman having menopause) and that's it... Lots of PSA checking to see how he's progressing. Tell him to buy a bra........... (use google to search for info and post here for lots of info).... Tell him to laugh....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/22/2020 6:04 PM DST

[Wassersug]

Dear Baroness,

Where in Canada is your bother located? Where is he getting his scans?

If hormone therapy is recommended, both you and he might want to check on the free educational resources at LIFEonADT.com.

Richard W.

[BaronessVonChatNoir]

Thank you for the link. I'll check it out among other info I'm trying to understand. We're in White Rock.

I was reading your replies regarding Estrodiol, something I had taken many moons ago for my menopause. My brother Gerry has yet to have his appt at VGH, I think it is. I'm trying to formulate relatively decent questions for Dr Black and the subject of estradiol was one - whether it would be OK to try as opposed to the ADT drugs.