I need some advice: I was diagnosed... - Prostate Cancer N...

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I need some advice

Mel8425 profile image
36 Replies

I was diagnosed with PC in May of this year

With Gleason 8 and 6 (4+4) and (3+3) on left side in 3/24 cores. There was no spread and confined to prostate. I was placed on hormone therapy to get PSA down from 4.7 and reduce size of prostate. After one month,

PSA dropped to 1.47. I am 68 and decided to go with Radiation. Oncologist recommended

5 weeks of radiation followed by low dose seeds. I wanted space oar and was told that I would need to do the seeds first as it will interfere with the placement of the seeds and then have the space oar inserted followed by the radiation.

I’m now worried that the radiation is going to cause me severe urinary issues and I’m going to end up having additional procedures to keep me flowing.

I never spoke to a surgeon, but thinking maybe that is a better route to go,

Any thoughts would be appreciated

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Mel8425 profile image
Mel8425
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36 Replies
Magnus1964 profile image
Magnus1964

I would go with external beam radiation. It's controlled. You may have to self catheterize later on.

Aodh profile image
Aodh

I’m not sure that I can offer advise but when I discussed spaceoar with my RO (it’s not yet generally available in Ireland) he said that it would only be advised in a minority of people; the advancements made in external beam radiation equipment and planning etc. made it it look like a solution looking for a problem to fix. Why are you convinced that you must have spaceoar? Radiation therapy has been successfully applied with minimal side effects for the vast majority of people for quite some time now.

Hugh

Mel8425 profile image
Mel8425 in reply toAodh

Good question Urologist told me about it before I realized how much money he makes inserting it,

Tall_Allen profile image
Tall_Allen

First, I suggest you get a Pylarify PET scan to rule out distant metastases. It will also tell you if there is spread to pelvic lymph nodes that can be simultaneously be treated.

You are getting the most curative kind of therapy possible for a man in your situation, results are much better than surgery. The downside is high rates of urinary retention (17%). SpaceOAR doesn't help with that. In fact, SpaceOAR doesn't really do much and it can cause problems. It is oversold to patients, who demand their doctors use it. It is not recommended for men who are high risk because of the risk of EPE with the danger of protecting the cancer.

prostatecancer.news/2018/03...

Surgery causes lasting urinary incontinence in 20% of men and is much less curative. Because the failure rate is so much higher, you will likely need salvage radiation anyway. And side effects are much worse with salvage radiation.

Another option is a new clinical trial (below). All patients get a Decipher genomic test based on your last biopsy. If you have low genomic risk, you are also treated with either 1 year or 2 yrs of ADT in addition to RT. If you have high genomic risk, you are treated with RT+2 yrs of ADT and randomized to a second line hormonal (e.g., apalutamide or darolutamide).

nrgoncology.org/Home/News/P...

Another option is a few SBRT ROs are running clinical trials where they are treated with SBRT alone.

Mel8425 profile image
Mel8425 in reply toTall_Allen

Thank youHow do you apply to get into theses trials

Tall_Allen profile image
Tall_Allen in reply toMel8425

Where are you located, and what is your ability to travel for treatment?

For the NRG GU 009 trial, show the link to your doctor. He can call Paul Nguyen at the Dana-Farber Cancer Institute or Oliver Sartor at Tulane Cancer Center for the investigator at a local site. The list of 103 sites are listed under "Contacts" at the bottom of this link:

clinicaltrials.gov/ct2/show...

maley2711 profile image
maley2711 in reply toTall_Allen

TA -

are they hoping that SBRT alone will be non-inferior to hypofractionation + ADT? or brachy boost? Some sound basis for that hope? Google SBRT trials?

Tall_Allen profile image
Tall_Allen in reply tomaley2711

For high risk, yes.

Justfor_ profile image
Justfor_

One treatment and done is a pipe dream. After realizing this I tried to find the longest chain of treatments that each one could kick the can down the road by some years. This is prostatectomy, irradiation and drug maintenance sequenced in this order. All of them have risks and side effects. It's the price to pay for riding the train.

maley2711 profile image
maley2711 in reply toJustfor_

so, your research shows that primary RP has better long-term results than radiation +/- ADT?

Justfor_ profile image
Justfor_ in reply tomaley2711

Certainly not, although there are papers claiming:

"... However, Knipper et al. as well as Chierigo et al. relied on large-scale epidemiological cohorts and did observe better survival after RP vs EBRT in high-risk localized prostate cancer..."

link.springer.com/article/1...

This is totally irrelevant to my line of thinking as it compares two treatments by themselves which is rarely the case in real life. If you study the bios of the participants here, the majority of them have followed a long sequence of treatments, NOT just a single one. Consequently, if the major 3 sectors of treatment (namely surgery, irradiation and medication) can each provide X,Y,Z years of effectiveness, which succession order can maximize the X+Y+Z total? This is the question and my educated guess is that surgery followed by salvage radiotherapy and lastly by chemical suppression leads to a longer total compared to radiotherapy (usually combined with adjuvant ADT), followed by a very limited choice of salvage treatments and ultimately chemical suppression.

In theory, salvage prostatectomy is doable and you will hear that there are other salvage practices after a failed initial RT, but in practice the first of the 3 legs has flown away.

There is also the direct opposite school of thought, that of the proverbial "kitchen sink", that is to resort to all treatments (nearly) concurrently, hoping for a "cure" or a long remission. People that subscribe to "not all eggs into a single basket" cautionary attitude, like myself, won't consider it seriously, others do and think highly of it.

You have to make your own research and decide upon the path to follow. I only laid out my personal views.

maley2711 profile image
maley2711 in reply toJustfor_

The study results long-term would include all the applicable followup/salvage treatments no matter the initial treatment...so I think the results give you the actual time to metastasis, death, BCR, etc. But i may be wrong about that. In other words radiation results would include the fact that fewer men proceed with any "salvage" other than ADT and chemo. With radiation and focal ultrasound, laser, etc...the problem is that there is less long-term data for the latest technology used for those treatments....surgery not changing that much over past years, whereas substantial improvements in other treatments. Yes, in the past, surgery definitely had better outcomes per my understanding. More recent trials/studies not showing that. Eg., brachy boost radiation besting both surgery and radiation, which performed approx equal......including additional salvage for initial surgery.

Justfor_ profile image
Justfor_ in reply tomaley2711

Regarding brachy boost, mind you that it isn't a fair comparison as it is offered only by a select number of RO, hence there is the practitioner's skill that plays a role. With prostatectomy any urologic surgeon offers it whether open, laparoscopic or robotic. It is like comparing the average family car to the top of the line one. Not fair in my view.

maley2711 profile image
maley2711 in reply toJustfor_

I don't think we'd discard something just because it wasn't available everywhere...probably available in at least most larger cities...if not brachy boost, then SBRT boost. My problem with boost is significantly greater risk of serious side effects.... but it seems we all have different risk perceptions.... boost has seemed to perform noticeably better, at least in distant metastasis, than RP or radiation alone. My argument for surgery would be mainly hope that ADT can be avoided long-term.

Justfor_ profile image
Justfor_ in reply tomaley2711

You misunderstood my post. I am not discarding anything. I just stated that for the RP case the statistical data comes from the work of a full spectrum of practitioners, spanning from novices that perform a handful operations per year to those with 2-3 ops per day and thousands under their belt. This does not happen with brachy boost. Only the top tier of them practice this technique. The same is true with extended lymphadenectomy for surgeons. One out ten surgeons will accept to remove more than 15-20 nodes.

maley2711 profile image
maley2711 in reply toJustfor_

OK I guess, but allowing for your comments about the skill levels used, that doesn't mean a man should forget about brachy boost? or what is your point, other than what you have stated? are you saying surgery numbers would be more comparable if all surgeons were highly skilled?Look at the studies radiation versus surgery vs brachy boost..... were the surgeons whose results were included of a lower skill level??

AlanMeyer profile image
AlanMeyerModerator

Hello Mel,

I'm not going to try to give you medical advice. What I'm going to do is to advise you not to base your treatment decision entirely on what you've learned, or heard, or surmised, about the different treatments. Another very important factor in the outcome of treatment is the competence, honesty, and commitment of the doctor and his assistants who perform the treatments.

I think the best doctors listen to your questions, think about them, and then give you thoughtful answers. They don't try to blow off your concerns by just telling you to trust them. They don't just give you a few minutes to meet with them and then tell you to go away because they have another appointment scheduled. They don't tell you that their patients all come through without serious side effects. If you ask them lots of questions, they'll think about all of them and try to give you the best information to make one of the most difficult decisions you've ever had to make in your life.

We patients don't usually have the knowledge to determine how competent the doctors are, but we can tell the difference between honest, caring doctors who believe in what they're doing, and doctors who are just picking up pay checks for performing services. So, if you have any doubts about the doc you're seeing, see another one too. I always recommend that patients looking for competent doctors have a look at the National Cancer Institute's list of "Designated Cancer Centers" - places where experts have determined that highly competent research and medical care are performed:

cancer.gov/research/infrast...

Best of luck.

Alan

Mel8425 profile image
Mel8425

Thank you Allen,I couldn’t agree with you more. I went through 4 urologists until I found one that I felt comfortable with. I just want a doc who cares and is competent and communicates with me in a timely fashion when I have a question or concern. My urologist gave me his email and personal phone number. He always responds to my emails.

As for finding a good doc at a major cancer center, I live near Hopkins and they did my initial biopsy 4 years ago. I ended up with Sepsis and spent 11 days in the hospital.

They say, only 5 percent of people get sepsis, I was that 5 per cent. Hopkins is a factory and I never returned there.

AlanMeyer profile image
AlanMeyerModerator in reply toMel8425

Yikes!

Johns Hopkins Hospital is located in a rundown part of the city. I live in a Baltimore suburb and, though I've never been treated at Hopkins, my son had a cardiology operation there and I also met a couple of prostate cancer researchers at a meeting I attended. The doctors I met struck me as truly first rate, but my son was much less impressed with some of the people lower down on the staff. I guess that getting the best care is a complicated problem.

You've had some bad luck, so all the more reason why I'm hoping for the best of luck for you now.

Alan

conbio profile image
conbio

I'm in similar treatment - 2 lesions, contained in prostate, no mets, Gleason 4+5. It did not take me long in the research to decide on the triple stool leg of ADT, EMRT, and seeds. It has a significantly better outcome than surgery for high risk (upper level Gleason) PC. That said, the radiation has improved much and my radiologists is not recommending the spacer thing.

He's done a lot of these (Seattle Cancer Care Alliance/University of WA) and at this point that's what is planned. In month 3 of ADT, radiation end of January, a month off, then seeds. Best of luck to you

maley2711 profile image
maley2711 in reply toconbio

regular IMRT or SBRT? The RO name? I'm in Portland.

conbio profile image
conbio in reply tomaley2711

Kent Wallner at UW - went with him because he does beam radiation (IMRT my choice) and has extensive experience implanting seeds over 20 years

maley2711 profile image
maley2711 in reply toconbio

Thanks Conbio!

Mel8425 profile image
Mel8425 in reply toconbio

Thank you, I wish you luck also!

esperandrich profile image
esperandrich in reply toconbio

Similiar to you (4-4 gleason score, 2 out of 12 cores) and agree that the Ascend RT treatment of external radiation, seeds and at least 12 months of ADT and maybe 18 months is the way to go.

CHPA profile image
CHPA

I’m not a doctor and sadly even doctors go either way on surgery Vs radiation. I’ll just say that having been diagnosed with G7 at age 57 I chose surgery and two years later I have no regrets. Took a little while to get back in business but everything is functioning and I have little worry that radiation didn’t catch everything.

Mel8425 profile image
Mel8425 in reply toCHPA

I’m 68 and just didn’t want to do surgery.It’s a personal choice for each of us.

Best advice, find the most experienced doctor you can find.

I wish you the best.

CHPA profile image
CHPA in reply toMel8425

To be sure one’s place in life is a big factor. What makes sense for someone in their 50s vs 60s vs 70s and beyond often dictates the choice for treatment of this condition and others.

Mel8425 profile image
Mel8425

Whoops, didn’t see that you had the procedure already

esperandrich profile image
esperandrich

If you can handle it and your doctor agrees you might want to consider 12 months or more of ADT. Ascende RT trial shows that plus radiation and seeds had good results.

Mel8425 profile image
Mel8425 in reply toesperandrich

My oncologists was talking 4 years of ADTI’m not planning on doing 4 years

Most likely 2 years.

esperandrich profile image
esperandrich in reply toMel8425

4 years seems really long. Haven't seen anything supporting that. Maybe 2 years max with seeds and external radiation.

Mel8425 profile image
Mel8425 in reply toesperandrich

I agree with you

mrj9 profile image
mrj9

My situation is very similar to yours: I am 69. Earlier this year my Gleason was 4+4 (elevated to 4+5 by John Hopkins). The PCa was confined to the prostate - I had bone scans that were negative. My next step was to start on ADT (Lupron shot every 3 months). In June of this year I had High Dose Radiation (HDR) Brachytherapy Boost to the prostate. Next I had 23 sessions of IMAT (a version of IMRT) to the pelvic area. FYI - The HDR dropped the radiation from 39 to 23 (16 would have been to the prostate) - I did have the Space OAR inserted prior to start of radiation. After the radiation treatments my medical oncologist put me on a daily does of Zitiga (Abiraterone - Abbie). My PSA has dropped to less that 0.1 where it was 8.7 at the start of this year. So far it has stayed there. The plan is to stay on this protocol (Lupron and Abbie) for 18 months. Before this started I had had Focal Laser Ablation which only worked short term. The current protocol has made me adjust my medications to reduce pain in my knee joints - It is now under control. Hope my story gives you some food for thought. Good luck in your journey to combat your PCa!

Mel8425 profile image
Mel8425

Did you have any issues with the space oar?My oncologist told me if I want the space oar, I need to do the seeds first. Is that how your

Oncologist handed it?

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

This is a decision only you can make.......Just make sure they don't fry other than the target...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 12/07/2021 7:32 EST - Day of infamy.

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