1. < Prostate Cancer

Surgery? Radiation? Can I have an independent suggestion?

Posted by hanscasteels @hanscasteels, Dec 19, 2024

As a Canadian, I apologize in advance for my self-centered question. I have done all the preliminaries and now must make a choice. When asking urologists, they’d advocate for “cutting”. When talking to radiation oncologists, they’d say “radiate” - statistically, the odds are equal or better, and the side effects - well, perhaps, eventually, you might have to deal with those. Which leaves me, as someone reluctant to understand issues related to cancer that I never wanted to know, to make a decision.

In short, here are the parameters: over 4 months, PSA readings of 26, 21, and 25. Biopsy showed cancer in the left nodule, Gleason 3+4 in 5 out of 12 cores. Cribriform and suspected perineurial invasion. Bone scan and CT scan showed no metastasis. PET scan shows a significant uptake (3.7) in the prostate but also, no metastatic activity, except for a minuscule uptake in L4 lumber (but judged to be benign). That doesn’t eliminate microscopic events, I suppose. Also had a prior appetizer of a heart attack and had CABG (9 bypasses).

The question now: what would be an optional approach for me, specifically. ChatGPT says a short course of agonist/antagonist ADT, Brachytherapy, and EBRT. The urologist says “if you want it gone, call me”. The radiologist says “the isotopes are at your service”. How on earth can I make an informed decision that’s best for me if everyone advocates for what they do/know as the best approach?I suspect some answers might be - it depends what consequences you want to deal with - granted. But medically, what gives me the best chance to conquer this, well, shit?

Where would you take it?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

clandeboye1 | @clandeboye1 | Dec 20, 2024
In reply to @hanscasteels "Yes. Investments in new(er) technologies is not a northern priority it seems. I just hope that..." + (show)
@hanscasteels

Yes. Investments in new(er) technologies is not a northern priority it seems. I just hope that the irradiation equipment is not 20 years old

Jump to this post

If you live near Toronto you cannot get better SBRT treatment , if this is your choice , at Sunnybrook Hospital or The Princess Margaret .
There are two guidance methods CT Scan and MRI . The MRI is superior .
I have an associate near St. Cathraines who had the SBRT 5 Session treatment : Mon - Wed- Fri and Mon , Wed the following week , including a session of hormone treatment ( not before the treatment . He swears by the result .
Because he lived so far away from PMH - They housed he and his wife in one of their condos in Toronto -- Free of charge .

REPLY
hanscasteels | @hanscasteels | Dec 20, 2024
In reply to @clandeboye1 "FYI Followup. There are two Trials # currently recruting in Toronto. # 1 NanoKnife headed by..." + (show)
@clandeboye1

FYI Followup.
There are two Trials # currently recruting in Toronto.
# 1 NanoKnife headed by Dr. Nathan Perlis at the Princess Margaret Hospital . Ranked in the top 5 Treatment & Cancer Research Centers in the WORLD .
# 2 TULSA-PRO , at the Sunnybrook Hospital where it was invented . It is headed by Dr. Laurence Klotz who was part of the original TULSA-PRO research team
The leading NanoKnife surgeon in the Toronto area , and there are several , is Dr. Robert Nam at North Toronto Cancer Associates .

Jump to this post

Thank you

REPLY
hanscasteels | @hanscasteels | Dec 20, 2024
In reply to @clandeboye1 "What Focal Therapiess have you researched ? Where do you live in Canada ?" + (show)
@clandeboye1

What Focal Therapiess have you researched ? Where do you live in Canada ?

Jump to this post

I haven’t. All activities are done via the grand river cancer center. I have a few concerns about them - for instance, Brachytherapy has only been practiced there since 2023, by a dr who has been at it for two years. Perhaps I’ll ask for a referral to princess margaret. This is when all the comments I read reflect the importance of expertise and having done this many times…

REPLY
jeffmarc | @jeffmarc | Dec 20, 2024
In reply to @clandeboye1 "jeffmarc. F.Y.I. Cyberknife SBRT , HIFU , NanoKnife , Cryotherapy and TULSA-PRO , which was invented..." + (show)
@clandeboye1

jeffmarc. F.Y.I. Cyberknife SBRT , HIFU , NanoKnife , Cryotherapy and TULSA-PRO , which was invented at Sunnnybrook Hospital in Toronto , are ALL available in Canada . Cryotherapy is covered by the peovincial medical system in Alberta . An associate of mine had the Cryo treatment recently in Calgary , by a former Urologist from UCLA .
Monotherrapy SBRT is very popular at sevveral hospitals in Toronto and other parts of the country .

Jump to this post

Thanks for the info. I will use this information in future recommendations.

REPLY
clandeboye1 | @clandeboye1 | Dec 20, 2024

MY ADVICE -- I LIVED IN KITCHENER FOR 9 YEARS & Know the local Hospitals .
Get your butt , ASAP , to the experts in Toronto . Research your options via The Princess Margaret , Sunnybrook or The Toronto General . Have you previously studied Dr. Walsh's book which I previously referenced .
I live in Niagara-on-the-Lake and am " A Prostate Cancer Advocate " . I have assisted associates throughout Canada , the USA , the U.K and Europe .
I assume you are currently on Active Surveillance .

REPLY
1 reply
keywest19 | @keywest19 | Dec 20, 2024
In reply to @survivor5280 "I can only share my own experience and how I got to my conclusion, the rest..." + (show)
@survivor5280

I can only share my own experience and how I got to my conclusion, the rest is for you to be an advocate for your own health and take the steps needed that you feel are best for you.

I also had a Gleason 3+4 and, at 54, was told that surgery was preferable to radiation because I had enough years left that I would likely experience the long term impact of radiation before my natural life was over. This was explained to me that this might be recommended to a 75 year old man because their natural life was shorter.

People told me here "surgeons will recommend surgery, radiation oncologists will recommend radiation" and it sounds like that's what you got. But I can say that I spoke to nine experts: 3 x urologist, 3 x radiation oncologists, 3 x medical oncologists - and this doesn't include other disciplines that have loads of experience with prostate cancer patients but don't do the procedure. In my case, every single one of them gave the exact same advice. Now, these doctors were not in the same hospital, network, practice or anything else - I intentionally varied my search across locations to make sure the opinion was as unbiased as possible.

Adding to this, I also read dozens upon dozens of research papers (not opinions, actual research) that back up their recommendation.

Their advice was unanimous but beyond that it made sense to me: we don't know how bad the cancer really is until we remove the prostate and analyze it. Radiation doesn't do that. Biopsies don't do that. PET scans don't do that. MRI's don't do that. All the other methods give little glimpses here and there, but removal tells the whole story of the prostate, even if it doesn't yet reveal if it's gone beyond there all the time (hence the need for PET scans).

I haven't yet had my surgery, it's in about a month, but while I'm concerned with life after this I am 100% confident that my decision to have it removed is the best one for me.

There are other procedures, but while some people have had wonderful success with them, they are still considered experimental or "on the edge" and in most cases I found the efficacy of these alternative procedures could not backed up, some of that is the lack of extremely in-depth research of the available data - which is limited because they are new enough as to not show too much long term data (as in 15 years worth).

This was my experience up to this point.

Jump to this post

This was true for me. My 3+4 biopsy was actually 4+3 with cribriform, perinural invasion, and tertiary 5, after my prostate was examined after surgery. My Prolaris test even scored me as borderline active surveilance. Sometimes biopsies do not give a clear picture of your cancer. I think I read perhaps 30% of the time. I'm glad I opted for treatment.

REPLY
hanscasteels | @hanscasteels | Dec 20, 2024
In reply to @clandeboye1 "MY ADVICE -- I LIVED IN KITCHENER FOR 9 YEARS & Know the local Hospitals ...." + (show)
@clandeboye1

MY ADVICE -- I LIVED IN KITCHENER FOR 9 YEARS & Know the local Hospitals .
Get your butt , ASAP , to the experts in Toronto . Research your options via The Princess Margaret , Sunnybrook or The Toronto General . Have you previously studied Dr. Walsh's book which I previously referenced .
I live in Niagara-on-the-Lake and am " A Prostate Cancer Advocate " . I have assisted associates throughout Canada , the USA , the U.K and Europe .
I assume you are currently on Active Surveillance .

Jump to this post

I’d rather say I have been on belly- button watch. The pace of activity has been very slow, it seems that none of this “is a big deal” - the first urologist I saw said “everything is fine” despite. PSA reading of 26… it’s been shit show, frankly. The oncologist yesterday said he’d refer me to someone else, cardiologist is involved because I involved them… it’s been very colloquial and provincial This is when I was told that, while the PET scan shows it localized, the lesion is highly aggressive and high risk. It’s mind boggling. No team structure. Individuals making individual decisions….

REPLY
1 reply
clandeboye1 | @clandeboye1 | Dec 20, 2024
In reply to @hanscasteels "I’d rather say I have been on belly- button watch. The pace of activity has been..." + (show)
@hanscasteels

I’d rather say I have been on belly- button watch. The pace of activity has been very slow, it seems that none of this “is a big deal” - the first urologist I saw said “everything is fine” despite. PSA reading of 26… it’s been shit show, frankly. The oncologist yesterday said he’d refer me to someone else, cardiologist is involved because I involved them… it’s been very colloquial and provincial This is when I was told that, while the PET scan shows it localized, the lesion is highly aggressive and high risk. It’s mind boggling. No team structure. Individuals making individual decisions….

Jump to this post

You have to have a consultation with a "Prostate Cancer Tumor Board " aka a Multidisplinary Team of experts .
ASAP get a referral to a major cancer hospital in Toronto -- INSIST ON IT .
YOU HAVE TO BE YOUR OWN ADVOCATE -- DO NOT BE DETERRED .

REPLY
1 reply
hanscasteels | @hanscasteels | Dec 20, 2024
In reply to @clandeboye1 "You have to have a consultation with a "Prostate Cancer Tumor Board " aka a Multidisplinary..." + (show)
@clandeboye1

You have to have a consultation with a "Prostate Cancer Tumor Board " aka a Multidisplinary Team of experts .
ASAP get a referral to a major cancer hospital in Toronto -- INSIST ON IT .
YOU HAVE TO BE YOUR OWN ADVOCATE -- DO NOT BE DETERRED .

Jump to this post

Agreed. I’ll initiate. Hopefully that won’t introduce another 6 month wait. Can’t afford it.

REPLY
2 replies
northoftheborder | @northoftheborder | Dec 20, 2024
In reply to @hanscasteels "Agreed. I’ll initiate. Hopefully that won’t introduce another 6 month wait. Can’t afford it." + (show)
@hanscasteels

Agreed. I’ll initiate. Hopefully that won’t introduce another 6 month wait. Can’t afford it.

Jump to this post

My experience in a big Ontario teaching hospital and cancer centre is that if it's critical, they can move very, very fast — they'll basically sweep their arms across the table and clear everything else off the schedule for you (that happened for me repeatedly in 2021).

If they make you wait, the bad news is that you have to wait, but the good news is that they don't consider your situation to be critical.

If you think you're being forced to wait unnecessarily, every Ontario hospital is required to have a Patient Advocate or Patient Relations Office and you can reach out to them. If that's not satisfactory, you can escalate to the provincial ombudsman:

Email: patientombudsman.ca
Phone: 1-888-321-0339

(I've never had to do any of these things, but it's good to know they're available.)

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.