Whats to Follow after bad biopsy afte... - Advanced Prostate...

Advanced Prostate Cancer

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Whats to Follow after bad biopsy after RP

keepinon profile image
19 Replies

Hi To All

I have been coming to this site daily for about a month. A lot of info to be learned. I appreciate everyones's time and dedication that respond.

Dx in early Jan. Gleason 4+3, PSA 14, biopsy showed a lot of tumor.

Had RT a week ago, with positve margins, SV and lymph node involvement. Gleason now 5+4. Ugh.

Had short conversation with Urologist when having my Foley removed. My surgeon was on vacation. Will be talking with him this coming week.

Anyway, this Urologist said after my 1st PSA test in 5 weeks, we would decide what to do next. If PSA is low, RT +ADT. If it comes back high, I think he said immunotherapy. Does this sound right? What should I expect to come in the near future?

Also, I am in the Kaiser system in N. CA. Anyone else experienced with

fighting this disease with Kaiser? Am I in good hands? Happy with my treatment and docs so far. Thank you.

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keepinon
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19 Replies
Tall_Allen profile image
Tall_Allen

If PSA is below 0.03, you can watch it. If it is 0.03-0.2, you can have SRT probably without ADT. If it is above 0.2, you may wish to have an Axumin scan (or a PSMA-based PET scan at UCSF or Stanford, which they charge for) to rule out distant mets before having SRT. If there are distant mets, you can forgo SRT in favor of other therapies.

keepinon profile image
keepinon in reply to Tall_Allen

Thank you for the response.

Tall_Allen profile image
Tall_Allen in reply to keepinon

Sorry. I just re-read your post. I missed the fact that you had already had SRT. But I am confused - why do you write "If PSA is low, RT +ADT" if you've already had SRT?

keepinon profile image
keepinon in reply to Tall_Allen

My bad. It should have read RP.

I will try and edit.

keepinon profile image
keepinon

I posted the above and made a mistake. I had A Radical Prostatectomy (RP), not RT.

Sorry for error. I could not find how to edit.

cujoe profile image
cujoe in reply to keepinon

keepinon - go to your original post, click on "more" at the bottom of the post, and then click "edit" in the drop down. Works same way in replies to posts.

As for your original question, I had similar pathology (sans-lymph node inv) and did 8 weeks adjuvant IMRT with an "undetectable" <0.1 PSA. (No adjuvant ADT altho' it was discussed as an option.) PSA remained < 0.1 for 3 years post-surgery before rising rapidly leading to initiation of IADT treatment about 18 months ago. No way to know if the RT extended my undetectable time to any significant degree. It seems to work for some, and not so much for others.

It might be helpful for you to review the following somewhat dated document from the AUA and the updated analysis that follows. If nothing else they will help frame the risks involved and help you ask informed questions when you next meet with your surgeon and RO.

Adjuvant and Salvage Radiotherapy After Prostatectomy: American Society of Clinical Oncology Clinical Practice Guideline Endorsement

Abstract is here:

ascopubs.org/doi/abs/10.120...

Downloadable PDF of full text with charts is here

ascopubs.org/doi/pdf/10.120...

AUA 2017: Identifying the Optimal Candidate for Early Salvage Radiation Therapy after Radical Prostatectomy for Prostate Cancer: A Long-Term Multi-Institutional Analysis

urotoday.com/conference-hig...

Be Well & Good Luck - cujoe

MichaelDD profile image
MichaelDD

I am a breast cancer survivor. 15 years ago I had it done at Kaiser. Had difficulties to say the least. I have lived in the East Bay of San Francisco since I was 13 and all but about two years I have been part of the John Muir system. As TA suggested consider the GA68 PSMA. I had it done last October and it was successful in finding my mets when no other scans did. My local medical oncologist recommended me to UCSF for this. I'm so thankful for it. Best to you.

sturn profile image
sturn in reply to MichaelDD

Hi Michael, we live in Danville in the East Bay, and I would love to know what medical oncologist you see. So far my husband has been going to UCSF where he was in a trial. But the trial has ended and he's thinking he might like to have someone closer to home. (Traffic is awful, you know!) I wonder if you know about the excellent Prostate Cancer Support Group that meets twice/mo in Pleasant Hill. Let me know if you're interested.

larry_dammit profile image
larry_dammit

Sorry to hear about the monster, I would be talking to a oncologist and getting scans done to see if the monster is out of the cage. If the cancer has left the prostate then there’s no need of removing the prostate. Without scans to see the urologist is flying blind. Good luck

Sculler profile image
Sculler

My husband 57 now and I are in Nca and have Kaiser . Kaiser follows a format , but individual Drs have different opinions. Not sure we have level of care you would have at well known places but it what we have for now and happy with Drs.

We are in The Valley, so we had husbands primary dr give us a referral to Kaiser Santa Clara, which is a Kaiser cancer center. I did some research found a urologist there experienced , Dr Hsu .

they don’t really talk a lot about the radiation options very much, and for better or worse he wanted his prostate out!

There’s family history of PC, Presurgery his PSA was 5.2 He had surgery Dec 2017 , pulmonary blood clot when he got home .

He’s on Coumadin for now .

His Gleason was 4+3=7 , possible SI , negative margins. Psa was 0.1 after surgery and was that till Oct 2018 when it went to 0.2 .

His urologist called us he recommended , ADT 4 months with salvage radiation , not to watch and wait. We are 1.5 weeks into radiation, but we are having it in Kaiser Sacramento closer to home. Prayers this kills it off. We have always exercised , but exercise has really helped him a lot with mind and body.

What has been a GREAT help is this APC site.

We live differently now , don’t put fun plans off , eat ice cream on Sunday with the plant based diet!

the grass will always be there the next day to mow.

Prayers for all 🙏🏼

keepinon profile image
keepinon in reply to Sculler

Thanks for the reply. Good luck with the RT. Hope it works for you. I will be gooing to Roseville if i end up with it..

monte1111 profile image
monte1111

Kaiser, Central Valley. Will be going to Santa Clara for Provenge if/when it comes to that. Not in your situation. Straight to lupron/chemo, now on xtandi. Getting SOC. Abandoned low cost senior advantage plan to go with high cost kaiser senior advantage plan when I found out I was seriously ill. Not a lot of choices in Central Valley. Did not know that they had a medical assistance plan, but now pay $0 except for premiums. Nice, for a one income SSA person. Got me out of the "I can afford to live x amount of years" rut. Hope things work out for you.

keepinon profile image
keepinon in reply to monte1111

Thanks for the reply. Sounds like you are on Medicare. Did you think about plans other than Kaiser? I am eligble for Medicare but currently on my wife's Kaiser plan.

monte1111 profile image
monte1111 in reply to keepinon

Don't take anything I say for gospel. Check it out for yourself. If you are eligible for medicare, aren't you required to go on medicare by your wife's plan? If you are 65 almost all plans would make you accept medicare along with being in wife's plan? Fresno Kaiser Advantage Plan is $20 per month, $40 per month with dental/vision. You would need to figure out the co-pay situation. I know people with Kaiser individual plans and their premiums are mind boggling. Plus I pay $135 mo. medicare part B. That differs for different folks. Now, I am just a poor boy, so have Kaiser Medical Assistance, the office would have a flyer on the counter, or google it. They gobble up cancer patients because they make so much money from medicare from them. If you are both working and making good money that plan doesn't work. Some people have said don't do advantage plans, because may cause preexisting problems if you switch? If you are just now turning 65, you have a lot of homework to do. Sorry. My brother lives in Auburn. Just love it up there.

sturn profile image
sturn

If you are in Kaiser in N. Cal, you should request a consult with Dr. Andrea Harzstark, in Oakland Kaiser. We knew her when she was at UCSF before she moved to Kaiser several years ago. She is a wonderful, caring doctor and is extremely knowledgeable and up-to-date. She has become Kaiser's "resident expert" on Prostace Cancer and I feel sure you wouldn't have a problem getting to see her for opinions on what's best for you.

keepinon profile image
keepinon in reply to sturn

Thanks for her name. My surgeon mentioned her to me today. Not by name, but someone he consults with.

TEBozo profile image
TEBozo

Mark Scholz' group in Marina del Rey suggested after my RP on January 4th ,ADT plus RT plus Zytiga. had the Gallium scan at UCLA and showed me clear except for lymph nodes-3. Got a Firmagon shot on March 27th.

keepinon profile image
keepinon in reply to TEBozo

That sounds like the road i should follow. Whay was your PSA after surgery?

TEBozo profile image
TEBozo in reply to keepinon

2.8 at 8 weeks then 2.61 at 10 weeks.

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