Questioning treatment plan for advanced prostate cancer?

[Mare28]

Husband (age 59) newly diagnosed with Stage 4 PCa, Gleason 10, with mets to pelvic lymph nodes, and hilar lymph node, seminal vesicle invasion per PSMA pet scan. Diffuse, aggressive adenocarcinoma. Treatment is Lupron and radiation therapy anytime in the next 6 months. Apparently there’s no rush to treat advanced PCa. [Another member posted that her husband’s oncologists refused to radiate his hilar lymph node due to possible damage to lungs, heart - ours aren’t concerned - I asked.] My husband’s docs did not offer chemo, no curative attempts, just manage his disease until he dies. This strikes me as a callous, lackadaisical and archaic treatment plan especially with this level of disease. Anyone else have a similar experience?

[Tall_Allen]

I'm sorry to say, that we don't know of any cures, but it can be managed as a disease one can live with for, hopefully, a long time.

Lupron will stop the disease from progressing for now, and it is usually started a couple of months before radiation.

If there are no distant metastases, other than the hilar met, radiation of the prostate (called "debulking") can slow progression quite a bit.

prostatecancer.news/2018/09...

Hormone intensification with Zytiga, Xtandi or Erleada can slow progression even more.

[Mare28 in reply to Tall_Allen]

Thank you for taking the time to respond.

[Hidden]

HI ! I’m sorry that the doc made you feel this way . That’s no good ! I had a callous uro that let me go into k failure waiting a biopsy . I started rough with pc . Uro said I’d live 36 months tops . If I survived the 50/50 chance given to survive the treatments . I had tubes out of back and foley for 18 months .I was then 53 and felt early to this party .. I completely disagree that there is no rush . The good news for me and hopefully for your husband is that It worked for me . I was messed up , I wasn’t a candidate for surgery . So I did Lupron and a test adt drug stopping adrenal production of t with 8 weeks imrt and it all worked . I’m on 86 months 6 yrs clear of pc and Psa . I had a similar pelvis spread ,no distant mets. Just 2 Lymph nodes lit on scans . Am I cured? No known cure for #4 but some here have lived for decades beyond some pretty terrible dxs. . It can be a whirlwind of tmi . initially its all over whelming... Time to pray if you do! My wife’s love and care for me is my winning factor against pc . Ask questions and good people will answer . We all can relate to that dx . My uro told my sweet innocent wife and I that he was pissed off because I wasn’t a RP candidate . That hurt us . Just get him through this first round . I pray that he can stuff it away for many many years . Please don’t feed into anyone negative . Keep him up! 🙏🙏🙏🙏 Scott

[Mare28 in reply to Hidden]

Thank you for your input and, yes, we have been praying and will continue.😊

[Hidden in reply to Mare28]

It’s a slap in the face wake up moment to the brevity of our pathways here . Live in the moment . Love is the best cure .. he is 2 yrs younger than I . His youth oddly enoug( could be in his favor to fight this! I’m pulling for him to outlast this pc . He will be altered hormonally and depleted a bit physically . The ego gets trampled .. with support and compassion he will get to a better place . Not fully knowing what to expect is a horror . Soon you’ll know and proceed to healing him . TGIF ! 🙏😎✌️

[Scout4answers]

I second what Lulu 700 says. Modern tech gives us a much better shot at a long life. there are a lot of ways to keep PCa in LT remission. Stay positive.

[Mare28 in reply to Scout4answers]

Thank you for your encouraging words.

[addicted2cycling in reply to Mare28]

Mare28, a simple suggestion for another path to consider by contacting Dr. Gary Onik (my own 2015 GL10 treating doctor) as an actual survivor of his metastasize PCa by self treatment employing his OWN PROPIETARY IMMUNOTHERAPY protocol that he began employing 7+ years ago and has since improved upon.

Not meaning to intrude but only providing a different avenue for consideration.

[Mare28 in reply to addicted2cycling]

Not intruding at all. I will check this out. Thank you.

[lespaul123]

Lots of good info here - I would add, eat the best food you can get your hands on , then walk walk walk and walk some more! Godspeed on your journey!!!

[Woodstock82]

I got very good results from Lupron and chemo. I am baffled why chemo was not offered as an option to your husband already.

[Mare28 in reply to Woodstock82]

If you don’t object to me asking, were you stage 4? My husband is. I thought chemo and Lupron were standard of care for this stage rather than radiation. I’m so happy to hear you’re doing well.😊

[Woodstock82 in reply to Mare28]

Yes. I was already stage IVb at diagnosis. My most distant bone met was on the top of my skull, and my most distant lymph node met was above my left collarbone. I'm three years in now, still on two layers of ADT -- Lupron and Zytiga. PSA is currently 0.02. Most of my mets are still present, but they aren't growing, and there haven't been any new ones. Side effects from the ADT are no fun, but it is doing what I need it to do.

[Mare28 in reply to Woodstock82]

His oncologists thought chemo would be too toxic for him. He’s relatively young (59), up to this point quite healthy.

[Hailwood]

It will be so hard to remain positive with a Dr giving you such a pessimistic outlook. As TA stated, Lupron will slow the progression and RT should be looked at asap in my opinion.

[Hidden]

If I had taken to heart my Uro’s dismal predictions for me I would not be here today 7 yrs later . He gave me 36 months max . We can’t listen to that ! Keep him positive . No gloom and doom . I did that tomy self for three years and put my sweet wife through much hell . Looking back , a real waste of my limited energy was spent being mad at myself for not catching this years earlier than I did . All that matters is what he does from here out . A complete health kick is in my eyes needed upon dx . If he can exercise through treatment it’ll help everything . You guys will find what is right for him . 😎🙏

[cancerfox]

I think I would get a second opinion. My pc wasn't as serious, but they still started radiation treatments about 2 -1/2 months after the start of the hormone shots, which they wanted to weaken the cancer for 2 months before starting radiation treatments.

[Mare28 in reply to cancerfox]

Thanks for your input. We’re getting a second opinion tomorrow.

[j-o-h-n]

He will be around for a very very long time....Tell doc to shove it...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/03/2022 10:54 PM DST

[Mare28]

Thanks for your input.😊

[Nusch]

I was also dx with stage 4 in 11/2017, PSA 2.222, but no mets. At this time surgery wasn’t possible. But I responded so well to ADT and chemo, that tumor shrank significantly. All doctors where more than surprised. Surgery 04/2018, ADT in total for 18 months, then we stopped. One met on PLN on 8/2020, RT to the spot plus 6 months of ADT. Three mets in PLN and recurrence in 1/2022, VMAT (RT) to PLN, prostate bed plus PLNRT, accompanied by 12 month ADT (still ongoing). PSA is undetectable. In addition to treatments I stopped all stress, intensified exercise including weight training against muscle loss and switched to whole wheat plant based diet, no alcohol, so sugar, no oil. I feel much better than all the years before and according to latest results of SPPORT study I‘m looking in the future with a lot of optimism. My PSA is currently undetectable, no mets.

Please, go for a second opinion. Never raise the question regarding remaining life time, nobody - really nobody - can give a correct answer. Each and every cancer is different and we can achieve so much together: good doctors and we. I agree with other replies that it’s better to act quickly. All the very best!

[Mare28]

We have scheduled a second opinion. I wholeheartedly agree that cancer differs from one person to the next. I’m glad that you’re doing so well.