Meeting MO in few days.What can I exp... - Advanced Prostate...

Advanced Prostate Cancer

20,782 members25,888 posts

Meeting MO in few days.What can I expect ?

dorke profile image
7 Replies

Fell a bit like the biblical Job...keep getting bad news

Age 53

Abnormal DRE

PSA 22

PET/CT PSMA shows involvement of pelvic lymph nodes, seems extra capsular

Today I got biopsy results : Gleason 9 (5+4)

Next Thursday I'm meeting an MO.

What do you think are my treatment options? is RP + lymphadenectomy an option in my case ? Having ADT and Arbiraterone early on as first line treatment , could I develop resistance to it and not be able to be treated with it whenever I become CRPC?

Written by
dorke profile image
dorke
To view profiles and participate in discussions please or .
Read more about...
7 Replies
FCoffey profile image
FCoffey

I'm not a doctor and won't try to diagnose or make treatment suggestions.

What I can do is emphasize GET A SECOND OPINION!

Start with the biopsy. Send it to Johns Hopkins, where Jonathan Epstein holds the only endowed chair in urologic pathology in the nation. If you've already sent it to John's Hopkins, pick another major cancer center.

When I sent my biopsy to Johns Hopkins, they lowered the Gleason score by a full point. That made a huge difference in the treatment options that were offered, and in my decision process.

See at least one urologist (they are more likely to recommend surgery), one medical oncologist (they prefer drugs/chemo) and one radiation oncologist. (guess what they will recommend.) If you find yourself leaning towards the treatment favored by one of those three, get a second opinion from another practitioner in the same field.

Think about putting together a team. Cancer is a complex disease. You need to find doctors whom you trust. Almost certainly more than one; no doctor knows it all. Your GP or PCP should be fully involved and up to date. I see three doctors regularly and two less frequently. I have a favorite radiologist (he talks to me) but I still get a second reading of every scan. Too much riding on it not to take that precaution.

When all my doctors agree on something, I've learned to trust that. When there is disagreement, I dig into it some more until I am satisfied.

Take your time. A Gleason 9 is serious, but prostate cancer is rarely an emergency. For the next few weeks you're going to be reacting to the shock of the diagnosis. When I got my biopsy results (on my answering machine) I spent the next 4 months with my first waking thought of the day being "I have cancer!" Not the best mental state for making important decisions.

Any decision you make will alter your life, very possibly forever. So choose carefully. Take your time. My case is different than yours; every case is different than yours. One of my doctors urged me to take 6 months to learn, ask questions, see different people, and make a careful choice. I'm forever in his debt for that sound advice.

You have many options. You can go with ADT and Arbiraterone to start the show or you can go with ADT and Docetaxel (chemo) to start. Yes, you will eventuality develop resistance to Arbiraterone. I went with chemo first, saving Arbiraterone until I become CRPC.

Disclaimer, I'm not a doctor. I'm just stating what I have gone through so far. Good luck.

Two links that explain treatment choices.

ascopost.com/News/55699

oncology.medicinematters.co...

dorke profile image
dorke in reply to

Hi Bill, see my reply to Allen.It looks i'm a candidate for ADT and arbiraterone or chemo, still to be decided.

Tall_Allen profile image
Tall_Allen

Surgery with ePLND is not your best treatment option. Your best treatment option is whole pelvic radiation with a brachytherapy boost to the prostate. Based on retrospective analysis at many of the top US institutions, 10-year metastasis rates were only half as high with brachy boost therapy, and 10-yr prostate cancer-specific mortality was about a third lower with brachy boost therapy.

pcnrv.blogspot.com/2017/02/...

I hope you will talk to a radiation oncologist who specializes in this therapy. They will start you off 2 months of ADT before the radiation and continue it for a few months afterwards. Because of the high rates of permanent cure with this approach, the amount of time on ADT should not concern you.

If you decide not to seek curative treatment, the combination of ADT and abiraterone will extend your survival. Recent studies have proved that reducing the cancer load overrides the selection of castration-resistant cells.

dorke profile image
dorke in reply to Tall_Allen

hi Allen, I met yesterday the MO in his private clinic.

he was OK and took the time to explain to me my situation and options.

regarding BT he said i'm not qualified since i'm gleason 9.

at first his approach was ADT + RT (dont know in which order) and then he said it is worthwhile to consider an aggressive treatment of ADT + AA (abiraterone) or ADT + chemo which is the standard of care for metastasic PC (not my case ,i am N1M0) since 2017.

They have a "cancer board" at the hospital on Tuesday and they will discuss my case.

unfortunately he didnt mention "cure" at any moment,but it didnt come as a surprise to me...

How does it sound to you? reasonable?

Tall_Allen profile image
Tall_Allen in reply to dorke

That's why you should be talking to a radiation oncologist and not a medical oncologist about this - they just don't know much outside their field. I think it is always a bad idea to talk to an MO while you are still potentially curable. To a hammer, everything looks like a nail.

I did not suggest BT as a monotherapy for you - I suggested it as part of a combination therapy that includes external beam therapy and hormone therapy. You have to find an RO that specializes in brachytherapy (either LDR or HDR) - an RO who just does external beam will not know much about it - it's very specialized.

j-o-h-n profile image
j-o-h-n

Don't be a dorke, take time to learn about this f&N devil inside us. Get a good oncologist and if you have one get second opinion(S) anyway.

Good Luck and Good Health.

j-o-h-n Wednesday 05/09/2018 9:53 PM EDT

You may also like...

Update following meeting with MO

those following my journey, I had a face-to-face meeting with my MO today and learnt a few things I...

What can I expect from chemo?

the end of the month. PC has become castrate resistant and oncologist says I should not wait for a...

How long can I expect Xtandi to work

what side effects can I expect taking Zytiga?

I am about to begin treatment with Lupron and Zytiga. I pretty much understand the Lupron side...

I did not expect this..

control. I don't think they give him 2 simultaneous treatments so this sounds like a goodbye. I...