Stage 4 A Prostate cancer: My partner... - Advanced Prostate...

Advanced Prostate Cancer

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Stage 4 A Prostate cancer

SherryKahn profile image
28 Replies

My partner was diagnosed with stage 4 A prostate cancer with spread to pelvic lymph nodes. Oncologist has recommended surgery followed by radiation and hormone therapy for a good prognosis. He is 65 healthy and no symptoms. PSA was 11. Has a history of prostrate cancer. Was wondering if we should get another opinion regarding getting surgery first. The dr wants to treat it aggressively. Any advice on what to expect, next steps appreciated.

More Information: Hi father died of prostrate cancer as did his uncle. His Gleason score was 9. And all 12 pieces of the biopsies had cancer: Prostatic adenocarcinoma, Grade Group 5 (Gleason score 4+5=9), involving 100%, 100%, 90%, 90%, 90%, and 80% (15 mm, 14 mm, 14 mm, 14 mm, 14 mm, 5 mm) of 6/6 cores. PSMA pet scan results: Intense PSMA uptake in the prostrate gland from apex to base.No psma avid osseous metastases. Non puma avid low attenuation bilateral adrenal nodule are indeterminant. Recommend dedicated contrast imaging for further evaluation. They did genetic testing waiting for results. This is being done at Cornell Weil in Manhattan with experts in the field.

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SherryKahn
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28 Replies
Tall_Allen profile image
Tall_Allen

Of course talk to a radiation oncologist. It's crazy, IMO, to get a prostatectomy knowing it will be followed by radiation. Why not do it right from the start? Side effects are much worse after RP.

The therapy with the best outcome is brachy boost therapy= whole pelvic external beam radiation + brachytherapy boost to the prostate + 3 years of ADT + 2 years of Zytiga

prostatecancer.news/2018/03...

street-air profile image
street-air in reply toTall_Allen

Do I conclude from this that everyone who got BBT, that got distant mets, died? as its 13% for both 10 year estimates?

extract from article
Tall_Allen profile image
Tall_Allen in reply tostreet-air

It seems reasonable that few can die of prostate cancer without observable metastases. But prostate cancer-specific mortality is notoriously hard to define, particularly in an analysis like this where there is no centralized determination of cause of death.

Jpburns profile image
Jpburns

I was much in the same boat (stage IV, spread to pelvic lymph nodes).

I opted for EBRT (and Orgovyx + Zytiga), partially for the reasons Tall_Allen mentioned: I knew surgery would be followed by radiation anyway. Did not feel like experiencing the initial trauma of surgery before radiation, plus outcomes are similar.

Did I make the right decision? Gee, I hope so. But I’m convinced that it was the treatment I could “live with.”

Obviously these choices are personal, and your decisions should be based on your own diagnosis and suggestions from your medical team.

WisdomSeeking profile image
WisdomSeeking

It looks like the oncologist doesn't know that much about this type of a cancer.

Check the Tall Allen's blog posts about dealing with doctors and second opinions: prostatecancer.news/search/...

Also I recommend you and your partner to read the comics that Jpburns created - you may learn a lot from it: healthunlocked.com/advanced...

Bdale profile image
Bdale

Hi SherryKahn, you have come to the right place to learn more about the disease, and to be able to have a meaningful conversation with you medical team.

I had a similar situation as your partner, I had three opinions, two Radiology/oncologists and a urologist/surgeon. Because of the bulk of my tumors two out of the three recommended surgery. Which I did followed by 38 sessions of radiation.

I am feeling great, and remain incredibly active.

But knowing what I now know and experience: I ended up with sepsis, incontinence, and no libido, I would have done what Tall-Allen recommended. By the way TA is one of the most knowledgeable people on this site.

Good luck with everything, I was diagnosed in 2018, and feel like I'm still a young man. It's all about the attitude.

Dr_WHO profile image
Dr_WHO

I also had Stage 4A PC. I had the same regiment, surgery, hormonal and external radiation. I was diagnosed in 2016 and was declared NED in 2018. I am still “cancer free”. You have to have surgery first before radiation because radiation turns your insides to scar tissue, making surgery hard.

Sending you both hugs, strength and prayers 💪🏼❤️🙏

Jpburns profile image
Jpburns in reply toDr_WHO

To be fair, you don’t “have to have” surgery first. That’s only true if you intend on doing both things (RALP and RT).

SherryKahn profile image
SherryKahn in reply toJpburns

Drs are saying he needs all 3- surgery, RT and hormone therapy.

Don717 profile image
Don717

At 65 I would look at other indicators of future issues...genomics, amount/location of the PC. You say he has "history of pc"? He was treated previously? Perhaps on A/S? Family members with PC? From my experience with RP, PC and 2 years+, it seems RP success is very dependant on surgeon skill, comorbidities of patient and if the cancer has already left the prostate. At his age/disease progression, I would be more inclined to follow a treatment process like TA describes.

I had RP at 60 and luckily I have no side effects to speak of but that doesn't mean I would recommend it to everyone. Good luck and thanks for caring for him!

SherryKahn profile image
SherryKahn in reply toDon717

Hi father died of prostrate cancer as did his uncle. His Gleason score was 9. And all 12 pieces of the biopsies had cancer: Prostatic adenocarcinoma, Grade Group 5 (Gleason score 4+5=9), involving 100%, 100%, 90%, 90%, 90%, and 80% (15 mm, 14 mm, 14 mm, 14 mm, 14 mm, 5 mm) of 6/6 cores. PSMA pet scan results: Intense PSMA uptake in the prostrate gland from apex to base.No psma avid osseous metastases. Non puma avid low attenuation bilateral adrenal nodule are indeterminant. Recommend dedicated contrast imaging for further evaluation. They did genetic testing waiting for results. This is being done at Cornell Weil in Manhattan with experts in the field.

Don717 profile image
Don717 in reply toSherryKahn

A full-house and PSA is only 11? Amazing. Spread to the nodes already I would choose BBT as suggested by others. I just don't think removing his prostate at this stage gives him any advantage. His risk of incontinence will be a concern and obviously ED issues will be realized with either treatment due to long term ADT and Testosterone recovery time. I'd go for the hardest hit/impact the quickest. Maybe talk directly to the docs about pros/cons of removal before or after RT and strictly focus on that? I know surgery is regarded as "difficult" after RT and comes with more side effects but I also know it can be done. I guess the question is, whats the gain of removal now? Some say less damage from RT with your prostate in vs with it removed and then RT regarding surrounding tissue? Lots to consider, good luck to ya's.

WisdomSeeking profile image
WisdomSeeking in reply toDon717

On Tall Allen's blog is written:

"There is no rush - even men with high-risk prostate cancer did no worse if they waited 3 months between diagnosis and treatment."

See: prostatecancer.news/search/...

WisdomSeeking profile image
WisdomSeeking in reply toSherryKahn

Please put this information to your bio in your profile. It helps.

Rucker profile image
Rucker

I've been in a similar place. 4B all in nodes. I used hormone therapy from my local oncologist and radiation with Dr Tran at the University of Maryland. Locally I was told I wasn't a candidate for radiation. Currently my PSA is undetectable. The hormone therapy isn't a lot of fun but I'm learning what I need to do to keep as robust of a lifestyle as possible.

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

One of our Mantras here is: "Never look back and say Should have, Would have and Could have". However, in your case you may be an exception, cause you can always say "Sherry Kahn".

My personal Mantra is "Laugh your ass off"........Greetings BTW....

Good Luck, Good health and Good Humor.

j-o-h-n

NanoMRI profile image
NanoMRI

When I was diagnosed with the likelihood of spread, over nine years ago, at the otherwise very healthy and active age of 57, I sought out consultations with specialist of every available treatment method. I even went to Europe for treatment methods not available at that time in the US.

To better understand the risk my cancer posed, I had two multiparametric MRIs (2nd was ‘better’), multiple opinions of my biopsy pathology (they varied), and genomic testing. Today, I would add genetic testing, PSMA PET and fluciclovine or Mayo’s Choline PETs for comparison, and a blood biopsy.

Soon into my consultations I knew that if it came to it, I wanted to delay ADT/CR/chemo for as many years as possible. Based on investigative findings and my desire to have the primary tumor burden removed, I had a prostatectomy. I knew salvage radiation was likely to follow, and it did. As that was unsuccessful in killing all the remaining cancer, I chose salvage extended pelvic lymph node surgery with the frozen section pathology method (looking back I wish I had had this with my prostatectomy).

Today, coming up on ten years, no ADT, no unmanageable side effects. I hope this helps. All the best!

Don717 profile image
Don717 in reply toNanoMRI

My surgeon did frozen sections with my tissue surrounding my prostate and LN's during my RP. All was good but he did remove one LN just to be sure.

NanoMRI profile image
NanoMRI in reply toDon717

Read your bio - outstanding share and outcome!!! IMO, well done by your surgeon with frozen section metjod. I was not aware of this method nine years ago with my RP. When I had my ePLND in Belgium, six years ago, they first took the common iliac nodes and if path is positive, as was in my case, they take all possible lymph nodes. My cancer was as far as para-aortic.

Don717 profile image
Don717 in reply toNanoMRI

My story pales to yours and 98% of the guys on here. I can't imagine going through what some of the folks on here have endured. I've learned from you guys after years of lurking in HU and various forums..lol. I did my research when my biopsies started and I knew not to give up. The surgeon I picked has the personality of a rock, but good conversation wasn't something I required!! I have a wife for that...no matter if I'm in the mood to talk or not!! I hope your path stays positive as it should with your diligence. My only regret is that not everyone has the same results/luck with this disease and it hurts to read some of the stories. Good luck to you sir.

NanoMRI profile image
NanoMRI in reply toDon717

I am grateful beyond words for what I have not (yet) had to endure. All the best to all of us! Keith

Atdabeach profile image
Atdabeach

Get a second opinion! I'm really surprised that a competent oncologist would suggest surgery followed by radiation. That usually happens only when surgery finds unexpected positive margins. When they know at the outset that there is spread beyond the prostate, I believe that most oncologists would recommend radiation as the primary treatment.

This is exactly what happened to me. PSA 19.9 at diagnosis, 10 out of 10 biopsy cores positive, Gleason 10. My first call was to Johns Hopkins, where the head of urology at Sibley Hospital (a Hopkins affiliate) immediately ordered a Jonathan Epstein review of my pathology, and a PSMA PET scan to determine spread. Once they saw spread to pelvic lymph nodes, surgery was off the table. I was surprised, given Hopkins' reputation for cutting-edge prostatectomy techniques, but they told me the same as those above have said: no reason to suffer the side effects of both surgery and radiation, when you can just do the latter (which is considered equally effective for PCa in general today). And in either case, he will have ADT to aid the effectiveness of the primary treatment.

SteveTheJ profile image
SteveTheJ

FWIW, SOC is to leave the prostate intact if it's stage 4. I had mine removed in 2020 as part of a clinical trial. So far, so good.

RWRB profile image
RWRB

My cancer is metastatic prostrate stage 4. Gleason score 3 @ 4+3=7

2@ 3+4=7.

Was going to have surgery BUT PET scan showed spread to spine, surgery was canceled. Got on ADT immediately, radiation 20 treatments to prostrate 5 intense radiation therapy to spine.

If surgery TALK TO DR ABOUT NERVE SAVINGS. Many times the nerves in that are effect the penis. I have a friend where sensation was lost to penis so no feeling and bowel and urination no feeling as well as when to go. Very difficult area due to nerves.

Good luck 🫂🩵

Derf4223 profile image
Derf4223 in reply toRWRB

RWRB, your case and mine are very similar. When I learned early on that I was osteopenic, my MO put me forthwith on Prolia. When diagnosed I started to exercise daily -- aerobics, resistance and elliptical machine / walks. There were suspicious spots on my PSMA PET/CT scan on 2 vertebrae but my RO did not want to hit them. My PSA and T became undetectable shortly after RT and have stayed that way now for ~21 months and running. Hang in there and do stuff that improves your QOL, which exercise IMO is front and center.

GoBucks profile image
GoBucks

Absolutely get a 2nd opinion. It's his life so why wouldn't you? Right?

JPnSD profile image
JPnSD

Hi Sherry. Like your friend, I was diagnosed Gleason 9 with a PSA of 8.6 and it appeared that prostate was still containing growth. Post op PC detected in one lymph node, therefore stage 4. Diagnosis was June 2019 and I was told by Dr. that I had cancer and it was really bad (direct quote). I opted for surgery ASAP and was undetectable post op. After 9 months PSA became detectable, so I consulted with Radiation experts at UCSD. I did ADT for 4 months prior...and then 38 sessions of Salvage Radiation (during Covid ,- hence 4 vs usual 2 months of ADT pre radiation). I continued ADT for a total of 18 months....being undetectable the entire time. Here it is 2 years plus following ADT......and I am feeling great and quarterly PSA is still undetectable. I did Orgovyx for my ADT...my T levels were back to normal in less than 6 weeks when I stopped. ED is workable.

Everyone has to decide their own path.

This was mine. I am a Patient Advocate for Oncology Clinical trials and have an MPH. I was able to have researchers on the front lines of PC review my case along the way. No regrets.

Professorgary profile image
Professorgary

I’d definitely get another opinion. I’m on board with TA on this one. Make sure you ask what increased risk to the urethra is involved if you have surgery first since the prostate is no longer there to protect the urethra if you then decide on radiation.

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