is there an end to this train ride? and how will they know?

I must be a little slow on the uptake but, “how do you get prostate cancer after your prostate has been removed?” And Jeff I know you’re very stressed out and also confused cause I certainly am.I just hope that you get well and get to feeling better cause you let them remove the damn thing and it’s still messing with you? Talk about unfair!! Best wishes and Godspeed!

@chebo1954
Not confused at all I’ve been Attend attending nine advanced prostate cancer meetings every week, for years, and hear about almost everything going on. I also attend a lot of webinars.

A lot of people‘s prostate cancer has gotten out of the prostate, Or they have aggressive features to their cancer or high Gleason scores. All of these things can lead to reoccurrence. Some of the advanced issues that come up can cause the cancer to get in your bloodstream, which then results in it coming back at a later time.

At a PCRI conference Kwon and Moyad agree to this. Seeds for metastasis were already there when surgery was done, waiting to grow.

So there are a number of ways that prostate cancer can come back. In my case, I have BRCA2, which causes my DNA to make errors, Those errors can cause the prostate cancer that’s come back repeatedly for me.

@lacraig1 I don't want to minimise what you're going through, but it won't always be as hard as it is now, so don't give up hope.

There was a popular WW2 song about the hardships of war called "You'll get used to it." It's really true. I don't love the ADT and Apalutamide side effects (or quarterly PSA testing, or the radiation damage to my bladder, or the rods and cement in my spine, or… or…) but after 4 years, it's become my new normal, and I don't think about it too much. I guess I got used to it.

@chebo1954 If the prostate cancer flares up after a prostatectomy, it's because some of the cancer had already escaped your prostate and moved to other parts of your body (but hadn't grown big enough tumours to detect yet). Those cells can lay dormant for months, years, or even decades and then sudden start multiplying. 😢

Well I appreciate you guys setting me straight on that because I really didn’t know that. Mine did get out of the prostate and into the bone and being treated with oral Zytiga & prednisone plus couple of shots every 3 months and it seems to be working so it wasn’t just a random comment and I am very sorry for what you’re going through and hopefully they can get you into remission and keep you there and for what it’s worth it seems to me from what research I’ve done there is a high probability that something else will bring about our demise before the prostate cancer since your med team is already on top of it. So, fingers crossed and hopefully you’ll be able to put this all behind you real soon.

@surftohealth88

thank you

@jeffmarc

Eight years. Wow,
my doctor said 3 years max.
Lupron and Zytiga
I asked him what they would do if I had radiation and finished the ADT.
He seemed unclear on the answer

@lacraig1 In 2021 they told me 3-5 years life expectancy (maybe 6 or a faint hope of 7 since I was young and healthy) when they found the big lesion on my spine, with serious progression starting in 18–24 months.

But that was based on old SEER data, from before new practices (like treating oligometastatic cancer aggressively) and new treatments (like the -lutamides).

I'm over 4 years now NED — no evidence of disease — and the oncologists no longer give me a specific life expectancy. My family doctor told me to plan for old age.

Things have changed that fast with advanced prostate cancer treatment. We're not sure if it's fully there yet, but it's rapidly becoming a medically-manageable chronic disease, like HIV, disbetes, or Parkinson's, rather than a terminal one. More here:
https://www.scientificamerican.com/article/treating-prostate-cancer-at-any-stage/
We live in exciting (and hopeful) times.

@lacraig1
The fact that you are on Lupron and Zytiga so quickly means that you’ve got an aggressive case of prostate cancer . It was six years after my prostatectomy before I went on Lupron and 2 1/2 years after that I went on Zytiga. I have A genetic problem called BRCA2 which causes my cancer to keep coming back and that’s why I’m on ADT for eight years.

After radiation, you can frequently stop the drugs after a year or two if your PSA stays undetectable for over a year. I think they are really worried about your aggressive cancer so they may want you to stay on the drugs longer.

Have you had genetic testing?

You could get genetic testing to find out if it could be a factor. Does anybody else in your family have cancer? You can get it here for free if you live in the United States, takes 2 to 3 weeks to get the results and a genetic counselor will call you. They will send you a kit that you return in the mail. Don’t check the box that you want your doctor involved or they won’t send you the kit until they talk to your doctor.

Prostatecancerpromise.org

@jeffmarc this is a test