Newly Diagnosed: Removal vs Radiation

Thanks again to everyone, this has helped me more than I thought it would. I threw myself a little pity party and the guests arrived :).

I am planning a consult with MD Anderson as my third, I am blessed to have the means to further my reach. I am trying to take this logically and responsibly to whatever extent I possibly can. My hope is that since my biopsy was fully healed in just a couple of weeks (versus the forewarned up to 3 months) and that the "big guy" has been the ever ready bunny my entire life that perhaps I'm in a good place for a full recovery post op. I have to hold on to what I can, control what I am able and defer to experts as much as possible.

Oh yeah. That was me, too. I read all about the biopsy.... "Oh, you're going to be in pain for 3 months after the biopsy. You'll have bruising & swelling in your scrotum..." Nothing. None of the above. Not even bleeding worth mentioning. Another example of not worrying about things that might not even happen in your case.

For me I was concerned about blood in the urine and ejaculate for "up to 4 months". It was bad the first few days, after 10 when I could safely do the other thing it was depressing but it cleared up within a week after. Overall, it was far better.

I'm with you, it's easy to worry about things for no reason. Although, reading the stories on here doesn't sound like it's totally without reason but every man has their own experience and some are worse or better than others.

@survivor5280
Tulsa Pro is a real good option right now
See my experience here:
https://connect.mayoclinic.org/discussion/tulsa-pro-initial-experience/
The side effects are very low if done well.

I do want to point out, and yes I also tried going to a center of excellence, that it still matters who you see. In general this is true everywhere I went: A surgeon will advise surgery. A Radiation guy will advise radiation.

They leave it up to you to find other answers if you want to look at those. So that means you need to read, call around a lot more, do a lot more work than just going to the same place where you already know what they are going to say. Basically, they aren't going to advise other options and leave that 100% up to you.

Thank you for the mention of Tulsa, it's good for me to know options!

And I am absolutely taking this bull by the horns myself, I've already got a second DaVinci surgeon scheduled for a consultation, two medial oncologists, one radiation oncologist and plan to get thirds from MD Anderson in all three fields.

@survivor5280 It sounds like you are being real proactive at pursuing the same two options (RP and radiation). However and again, if you want other options. you have to be pro-active in pursuing other options, none of what you listed will provide any insights into other options, and you may burn out just pursuing the same two options. It is up to you but you may want to cancel some of that and put some efforts outside the same options.

I wanted to give you links where you can look up where to do Tulsa. Just keep in mind academic places doing Tulsa limit who they accept because they are generally doing limited studies of 3+4 only for publications.

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Tulsa
https://tulsaprocedure.com/find-a-tulsa-pro-center/
https://tulsaprocedure.com/
If wondering about Tulsa Pro from a science point of view, here is a basic Tulsa science overview article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9231661/
Conclusions:
“As an alternative to conventional treatments, TULSA is safe and effective for prostate tissue ablation in men with primary PCa. There is also evidence that TULSA delivers effective relief of urinary symptoms while treating PCa in a single, low-morbidity procedure. The likelihood of freedom from additional treatment or potency preservation is associated with the planned ablation fraction.”

Hey Survivor - you chose your handle for a reason, I think…SURVIVOR.
You are quite correct in your thinking : PCa is NOT a gift where you come out better or happy that you got to experience it. It is a major life disruption!
But we all SURVIVED it and most of us have adapted to a new normal which is not too different from before except for the sexual aspect which can be devastating for some men and not a big issue for others.
In life, YOU GET WHAT YOU GET….it’s not fair, negotiable or deserved. Healthy lifestyles are great but they guarantee nothing.
Whatever treatment you choose you will be doing what’s right for you and your mindset. You will get through it (as you did before), realize the anxieties and fears were far worse than you imagined and you will SURVIVE.
Best of luck on your treatment and please keep us informed on your progress.

@survivor5280
We hear you!
The diagnosis of prostate cancer can be very hard to deal with. Some handle better than others. That is just life. You mentioned sleeping. Before I was diagnozed with prostate cancer I had developed PTSD that went into Anxiety/Panic disorder I was put on medications that really helped me.

I too had trouble sleeping and just made life miserable. I was put on Trazadone. It really helped me sleep. Once I started getting sleep I became stronger both physically and mentally. Medications and type can work for some and not for others just know they are out there. When I got diagnosed with prostate cancer it was not easy but knew I was in good hands at Mayo Clinic and UFHPTI.

Do you have access to physicatric department or a specialist that looks at your symptoms and hopefully find something that helps you? Mental health is just as important as physical health. I was taking Xanax, and Trazodone every day and night. I was able to slowly move off that and no longer take either. I do continue to take Escitalopram and was told most likely would be lifelong. I have no problem with that it the very lowest dose.

I also strongly believe in finding an exercise or hobby that can balance out your life. Finding something that you like to do will greatly affect your mental outlooks which will affect our physical health also.

I have been going to Mayo Jacksonville since 2006. Not only are the medical providers excellent but they have an excellent psychiatric department. My specialist I see is a medication specialist. All my doctors and specialist work as a team with everything being passed among the team and discussed when medications and treaments are prescribed.

Good morning. I understand your anxiety and fear of the future. I had that as well and it is a natural response. Let's start with the bad news that you have prostate cancer and need treatment and get that out of the way. Done.

Now on to the positive and the good news:

You are 54 years old. A radical prostatectomy in the hands of an experienced, skilled surgeon has very good outcomes. At your age it is highly unlikely you will experience any long term incontinence. (If you elect to have surgery I would recommend you buy the book Life After Prostatectomy by Vanita Gagliani available on Amazon. It is a comprehensive guide to achieving continence as quickly as possible with detailed explanation of the process.).

Again, with an experienced surgeon performing a nerve sparing surgery, you will likely not experience long term ED provided there were no significant issues pre-op.

A G7 is very manageable. It sounds like you caught it early with no spread.

Yes, after surgery (and even radiation in a year or two) you will have a dry orgasm. It's not what we want. But it is reality. Dry orgasms are not painful. Many men report that the sensation is just as pleasurable as before.

There are a multitude of treatment options available today. But the mainstay options remain surgery (RP) vs radiation. People on blogs have a tendency to promote the treatment they had. Going to a COE and getting opinions from a urologist and a Radiation Oncologist is clearly the way to go. You may even want to get additional second opinions.

RP removes the entire prostate and seminal vesicles, allows detailed analysis of the tissue by the pathologist and also lets the urologist "look around" in your pelvis to make sure there isn't any suspicious nodes or other issues. The cancer is immediately removed and "in the pan". Recovery from surgery is relatively short and painless.

Radiation has equal long term survival to surgery. No surgery and no immediate side effects of short term incontinence and possible ED. But, it has longer term side effects. Within a few years you will likely have dry orgasms. The radiation can damage the nerves and lead to ED. Should you have biochemical recurrence down the road, radiation is no longer an option. Surgery in the future on the pelvis after radiation treatment can be difficult with increased risk of complications. There is the very small, but real, chance of radiation induced cancer to bladder or adjacent structures decades later even though modern radiation therapy is much more targeted with new equipment.

I know this is difficult. I don't want to minimize what you are going through. But, given your age, G7 and no spread, the chances for an excellent long term prognosis without incontinence or ED are high. Hang in there!

It's a tough decision, and the important thing to understand is there's no silver bullet: radiation might miss some cancer, but also tends to go beyond the prostate and catch undetected local spread; a prostatectomy removes all the cancer in the prostate itself, but will miss any local spread.

The overall survival is about the same for both, so it depends on personal factors that you and your oncology team can discuss. Make sure you're being treated somewhere that's a research centre and/or affiliated with a university med school, so that they're up to date on latest treatments and best practices.

Some people do both (prostatectomy followed by radiation). When the cancer has already metastasised, radiation seems to be most common, since it's a bit less traumatic for the body, and it might be combined with chemo and/or other treatments in that case to try to give the cancer a big knock-out punch up front.

Best of luck! Most people here will naturally defend the choice they made, but there's no "wrong" decision, just different side-effects and trade-offs.