Still worried but currently still cas... - Advanced Prostate...

Advanced Prostate Cancer

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Still worried but currently still castrate sensitive

rosatt1 profile image
27 Replies

Should I relax being Gleason 9 received radiation therapy and ADT with last blood test result <0.1 or consider going on Docetaxel and/or Zytiga with my current first generation ADT?

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rosatt1
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27 Replies

What was your psa at dx, scan results?If you don't have metastatic disease you should add zytiga.

I was G9 and pt3bN1M0 after my RP.

Just finished 2 years ADT + Zytiga. Hit it hard early. My psa is <0.01 and has been undetectable for 21 months

rosatt1 profile image
rosatt1 in reply to

My PSA was 21 with Gleason 9 and have been 11 months on ADT.

Best to consult with your MO regarding your next move. Opinions swing greatly when planning your future treatments. Follow the science.

Tall_Allen profile image
Tall_Allen

Do you have advanced prostate cancer? Since you are posting here, I'll assume you do. If your metastases are only in your lymph nodes, you can certainly consider a temporary second-line therapy. If your cancer is in the bones or other distant locations, you should be using a second-line therapy.

rosatt1 profile image
rosatt1

The MRI result stated, "There is invasion of the right vas deferens and seminal vesicle". Gallium-68 PSMA PET/CT results stated, "The most superiorly located right upper-aortic node is located at the level of L2-3 (above the level of D3 duodenum) with SUV max 19.3." Also T1 grade 3 bladder cancer has been successfully treated. A Urologist and GP were both concentrating on the bladder cancer and did not follow up rising PSA.

Tall_Allen profile image
Tall_Allen in reply torosatt1

When you had the radiation, did it treat all the pelvic lymph nodes up through L2-3?

BTW- for some unknown reason, the incidence of secondary cancers is particularly high among those who have had bladder cancer.

rosatt1 profile image
rosatt1 in reply toTall_Allen

I asked may times are they treating the lymph nodes as well as the prostate gland during 39 days of EBRT with Genesis. The assistant each time said yes. I had a new urologist do preparation for EBRT and that Urologist later did a cystoscopy and then made a strange comment that he noted liquid retention in bladder that he drained and suggested perhaps I should see a medical oncologist for high-risk prostate cancer trials for patients on ADT. What kind of secondary cancers are common and have they commenced or continued whilst man is on ADT and still castrate sensitive?

Tall_Allen profile image
Tall_Allen in reply torosatt1

Your prostate cancer was a secondary cancer to your bladder cancer - isn't that what you said?

rosatt1 profile image
rosatt1 in reply toTall_Allen

I had symptoms of rising PSA, blood in the urine, pain when urinating and having to urinate every two hours. I did not receive the best advice unfortunately. I now have a new GP, Urologist and a radiation oncologist. I may seek advice from a medical oncologist as well. I still have to urinate every two hours but no pain when urinating and no blood in urine.

Tall_Allen profile image
Tall_Allen in reply torosatt1

But they did a biopsy and confirmed it was bladder cancer, correct?

rosatt1 profile image
rosatt1 in reply toTall_Allen

I had stage 1 bladder cancer but last cystoscopy showed bladder cancer still in remission but still dealing with Gleason 9 stage 4 prostate cancer with ADT.

in reply toTall_Allen

That happened to my Father . First the bladder . Then Two yrs later pc .

rosatt1 profile image
rosatt1 in reply to

Thanks for the feedback. How has your father coped with bladder and prostate cancer?

in reply torosatt1

Pops passed in 1999 from a heart event . He smoked two pacs of Salem menthols for 35 yrs . Quit it at 55. At 68 b c ,they injected chemo containing tb . He went into remission . Two yrs later had a RP .. mom as cruel to him and he decided to check out . No love at home .

rosatt1 profile image
rosatt1 in reply to

I am sorry for your father. I had a difficult divorce.

in reply torosatt1

We begged them two to do it ,to no avail . I myself didnt marry on purpose because of it until until was 53 with #4 pc .

nonm profile image
nonm in reply to

Get married after the DX with #4 pc? after a bad marriage and divorce, I was living along and enjoying it, then the #4pc, then really alone on myself. under 60, under normal circumstances, it's time to get acquainted with a kind-hearted same-aged to share the somewhat late-staged life, but don't feel the sense to share the #4pc experience with anybody unless she has cancer herself...

in reply tononm

I was never to wed . I met my dream girl on the beach in Cabo . 2 yrs later the icu tubes and 2 years of hell . She saved my life . I wouldn’t have made it through without love . That’s just me . I spent my life looking for love in all the wrong places . But I was a lone wolf bachelor . No more buddy . It is valiant of you to not want to put burden on a prospective partner.. but? Companionship and plutonic friendship for me is better than talking to the walls . Get a puppy . We Did . Lulu gives me affection by laying on my back sometimes while we Sleep . She’s like a heating pad warming my soul. I have a friend that’s in his 70s living solo with pc . Stronger than I . Nonm ,if you have a home and the financial means to share it . I’d try t . Nothing is easy about APc ..It is tuff on relationships. It was for her . I put her through some hell . I was angry at self and even had suicidal ideations . That fog lifted some 4 yrs ago . I do not have any advice. Or answers . Only that you can talk to me or others here in the Same boat . Most normal guys without pc cringe at the thought thinking it will rub off on them . Here we see it all . We all suffer . We have many fine people here that answer most questions . Compassion is healing ! Take care 🙏

SpencerBoy11 profile image
SpencerBoy11 in reply toTall_Allen

Thanks for the heads up re bladder cancer. Had not heard of that b4.

Worry begets more worry . I Say for now , that you’re ahead of the beast . Relish the Psa and keep it down . Any good numbers should be happy times . Pluck the day ! Live well .. let the docs do your strategizing . You feel better and Take care….

BruceSF profile image
BruceSF

You should start 2 years of Zytiga. There was a long term report on the combination of Zytiga plus ADT for high risk non-metastatic PCa at the European Oncology (ESMO) conference last Sunday. The 8 year followup recommended all high risk (like Gleason 8-9-10) men get Zytiga+ADT for 2 years. The results for metastasis free survival and overall survival were highly significant. The 4 year results published in 2017 suggested that this was the case, but they had to wait until the data matured to make the recommendation. The NCCN will probably consider it this year. medscape.com/viewarticle/95...

rosatt1 profile image
rosatt1 in reply toBruceSF

Thanks for the excellent article on Abiraterone. I now have a copy.

maley2711 profile image
maley2711 in reply toBruceSF

per the MSK nomogram, a non-metastatic man with high risk Gleason 4+5 in 2 cores, PSA of 7.5, age 72 has only 1% risk of dying of PCa in 1st 10years after surgery without ADT......why would such a man want to add ADT + Zytiga and all those SEs/complications? Yes, such a high risk man has high risk of recurrence, but also may have many years of good numbers and avoid detectable metastasis and the BIG negatives of castration!! So, I don't think there will be a SOC of surgery + ADT + Zytiga for all high risk men!!

maley2711 profile image
maley2711 in reply toBruceSF

the study was not for just high risk men....but for very high risk(2 high risk indications, eg Gleason 9 + PSA>40). Please be careful when summarizing results of study.

Stevecavill profile image
Stevecavill

I was also gleason 9, psa 20. I did radiotherapy to prostate and some bon3 mets. I stopped adt after 18 months, psa started rising again, so I did chemo, and I had 4 years off all treatment. PSA got to 0.75. So it certainly worked for me. I’ve just had two courses of radiation to new mets on a vertebra and a lymph node, so I’ll check psa in a month and see where I’m at.

33Ford profile image
33Ford

Diagnosed Sep 2020, Gleason 9/10, lymph involvement outside the pelvic area. CyberKnife & TrueBeam with Eligard. My MO added Zytiga. So far so good, last PSA .067.

rosatt1 profile image
rosatt1 in reply to33Ford

Thanks. I was also Gleason 9 with lymph involvement outside the pelvic area.

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