39 years old, 3+4 Gleason, PSA 6.28

[wally198562]

I was diagnosed with PC on May 1st, 2024 with the highest Gleason being 3+4 with 20% of the core being 4. Had a fusion biopsy last month to see if I qualify for focal therapy and I do. However my doctor wants to remove the entire prostate to hopefully get this out of my body for good. Has anyone close to my age had their entire prostate removed and if so, how long was the recovery and how bad was the ED after? How long did it last. I froze some specimens and im not married nor do I have kids so part of me wants to do focal therapy and do some lifestyle changes. Please give me your unbiased opinions.

[Darryl Partner]

just as an fyi, you are not alone as a young man with prostate cancer. healthunlocked.com/prostate...

[wally198562 in reply to Darryl]

I appreciate that but at 39, I'll be the youngest my doctor has operated on. 39 is insane for this cancer and I can't find anyone close to my age to see their treatment plan.

[Darryl Partner in reply to wally198562]

Have you considered asking your current doctor for a referral to a doctor with more experience with 30-40 year olds

[wally198562 in reply to Darryl]

I was initially being seen by Dr. Polascik at Duke and he referred me to Dr. Rothberg for focal therapy but they both want to do RALP. 🙄

[Gardenpests]

I'll give you a personal opinion, hardly unbiased. This cancer journey can be direct or it may take lots of twists and turns. There's no crystal ball, Many variables are out of our control, and luck will play a roll.

I was 66 when my prostate was removed. I used 1 pad after the catheter was removed. My first 'organism' was 4 days after the catheter was removed. I've had minimal urinary and sexual impacts. Now, 4 years without a detectable PSA. That's phenomenal, and luck went my way. In the future, I may or may not get a recurrence.

Given your age, I think your doctor wants to remove it while it is small and contained. They may hope, with small size, nerves can be spared and structural impacts minimized. Youthfulness helps with recovery from urinary and sexual side effects, too. The doctor may feel focusing on what is apparent now may miss very small cancers and leave tissue available for future, more aggressive, cancers. You have a long life ahead of you. I was on AS, my MRI missed the extracapsular extension, found during surgery, that increases my risk of recurrence. The surgeon made a larger margin to accommodate it. Statistics are one thing, but you are an individual.

Practice your kegels and find a busy surgeon who has done many hundreds.

[wally198562]

I truly appreciate this. These are the kind of opinions I need. I'm being treated at Duke so I fell confident in the skill of my surgeon and he did say he could spare both sides of the nerves. I prayed about this so much and this is where I landed. His main concern was PSA density as I have a small prostate at 39 and the PSA density implied an aggressive cancer so we agreed to take it out.

[Tall_Allen]

It sucks that you were diagnosed at so young an age. It is very unusual.

Urologists routinely recommend prostatectomy. I think that is misguided. It is true that younger men do better with surgery than older men, but that is true for radiation too. Younger men heal faster from any therapy. However, you also have more life to suffer from the expected side effects of prostatectomy - especially incontinence and impotence. Radiation and surgery (but not focal therapy) are expected to be equally curative, but the lasting adverse effects of surgery are far worse:

prostatecancer.news/2016/09...

Focal therapy doesn't work much of the time:

prostatecancer.news/2016/12...

After prostatectomy, return to baseline sexual function is seldom achieved:

pmc.ncbi.nlm.nih.gov/articl...

In addition, loss of ejaculate is guaranteed, and there is often size loss and climacturia:

prostatecancer.news/2017/12...

OTOH, radiation rarely causes impotence or incontinence, and ejaculate is often preserved. Some argue that radiation can cause secondary cancers some years later, but this seldom seems to be the case with SBRT (which is what I had):

thegreenjournal.com/article...

Even so, some radiation oncologists won't recommend radiation in men as young as yourself. It is so rare that there is little data.

I assure you,you have time to make this decision and you should talk to a variety of experts:

prostatecancer.news/2016/08...

It is also a good idea to get a second opinion from Johns Hopkins on your biopsy slides:

pathology.jhu.edu/patient-c...

[wally198562]

Thank you so much for this information. I've only heard of a few good outcomes with RALP but, the demographic is on average, about 20 years older than me as well. I don't want it out, but the doctor convinced me this was the best option. If I do radiation and it comes back, the scar tissue might not allow for the removal down the road. However, if the gland comes out and the cancer comes back, radiation is still an option

[Tall_Allen in reply to wally198562]

That is a bogus argument that urologists often give. Yes, it's true that you wouldn't want surgery after radiation, but there are plenty of other salvage treatments that work better than surgery:

prostatecancer.news/2017/09...

More to the point, radiation is completely curative in cases like yours 90%-100% of the time, so salvage is a non-issue.

prostatecancer.news/2018/10...

You can see for yourself what the odds are of surgery being curative. Fill out this nomogram:

mskcc.org/nomograms/prostat...

As you see, your odds are much better with radiation.

[wally198562 in reply to Tall_Allen]

Wow!!! Thank you so much for this. I'm about 100% convinced I'm not doing RALP

[London441]

If you value your erectile function it is my opinion that it would be insane to get a prostatectomy at your age. Tall Allen has a great deal of working knowledge, and especially when it comes to radiation. Heed his words!

Of course, he never had a prostatectomy, so maybe heed mine as well or instead. Yes I am disease free so far 5 years later. However, I required much additional treatment, including radiation. RP fails statistically about 30% of the time. Even in the most successful cases ED after RP is extremely common. Incontinence is less common but not nearly as rare as is claimed.

I had my RP by a highly regarded surgeon at a major center of excellence. Nonetheless I was left with both permanent ED and incontinence. My function was and is extremely good and my health compares favorably to men my age then and now (I was 63 at the time). I was skeptical about RP, but both the ‘get it all out’ sales pitch as well as ‘can’t do radiation later’ convinced me. Both assertions are often erroneous. Also, RP permanently reduces penis girth and length, so you know.

Think carefully about your choices. Meet with the best RO you can find to get their view. You are a young man.

RP is basically the same operation it was 25 years ago. Radiation has made incredible advances within the same period. I would absolutely never do it again. Great luck to you!

[Mike1601]

I had it at 49, a bit older than you but still young. Mine was the same 3+4. All the doctors were focused on were getting it out and I had a prostatectomy. I was the same as were my family, it was a case of get it out and we can live with the side effects. I got it done in Boston. That was 7 years ago and PSA is negligible since. The side effects were rough for me. The incontinence bit was easy enough, I did many thousands of Kegels and it sorted itself out in a few weeks, mind you I still need to watch sneezing or passing wind that I don't leak as well! However the ED was a disaster, getting it back was hard, maintaining it was more difficult, the climax is completely different and somehow unsatisfying. I did get the erection back but its not the same at all. If I knew then what I know now I would have tried every avenue before taking it out. I'm glad I dont have cancer and grateful for that (that was the doctors only focus) but Im not sure I would do the same again. I hadnt found this site when I got treatment. Everyone here is helpful but I would suggest you read Tall Allen's posts. Best of luck.

[BioPhile]

Hi there

I happened to watch an interesting interview with Dr Stephen Scionti this morning on the topic of Focal Therapy Options For Prostate Cancer (part of the Prostate Cancer Summit hosted by Dr Geo Espinosa).

I think you might find it useful - Dr Scionti goes into a lot of detail on the aspects that influence the ideal candidate i.e. Gleason, Stage, tumour location etc. and the various types of focal therapies that could be used (i.e. Tulsa, HIFU, Cryo).

Follow the link below and then select Dr Scionti on the RHS of the video menu - it's on for another few hours. If you miss it, this summit is likely to replay over the weekend when you can watch all the talks for a limited time.

drtalks.com/summit/prostate...

Here is the link to his website as well.

sciontiprostatecenter.com/

[aceace12]

goodluck

[WilsonPickett]

Surgeons do surgery. Make sure you’re fully informed on all the alternative therapies especially radiation. Tall Allen is spot on. You have research and work to do. I’m so sorry that you’re having this experience so young in your life. The majority of us here are well older.

[MakeItRainbows]

I was diagnosed at 45. (I am 47 now) You got me beat. Handily.

They do recommend surgery almost universally for younger patients and it’s what I opted for. Lots of proponents of radiation on here and even though you’ll be told to get surgery, radiation is a perfectly fine alternative. Some would say better. I’m just another anecdote on the side of surgery.

Why do they recommend surgery? In part, younger patients tend to recover better from the surgery than older patients. All the stats you see comparing radiation vs surgery (or frankly ANY prostate cancer study) have very few if any men younger than 50. Just not enough of us.

Why did I choose surgery:

- this is my 2nd cancer unfortunately (kidney) and i will need radiation I’m sure at some point. You can’t radiate the same area twice.

- i had experience with surgery (kidney), and I do pretty well with the experience and I understand how it works better than i understand radiation frankly

- i wanted the the cancer removed from my body. Period. End of story.

- i liked the idea of removing it and having the specimen to analyze afterwards (you can’t with radiation other than the biopsy prior)

- the day after surgery is the worst you’ll be, it’s all recovery and improvement from there. Now i understand not all men fare well with recovery, but I liked the clarity of that. With radiation, you can suffer side effects later on that aren’t immediately apparent.

- i found a great urologist who I trusted and had performed over 1,000 of them

How did I do:

- side effect wise, i fared well — I’m 95% continent. Occassional dribbles that truly do not impact my quality of life. My sexual function is nearly equivalent to prior to surgery. Maybe 90%. And with medication equivalent

- when they do surgery they remove nearby lymph nodes (another benefit of surgery rarely discussed), and test them for cancer. Unfortunately for me, they found a small bit in one of the lymph nodes. Now that truly sucks. And I have literally shed tears over this, but at least I know.

For me personally, I have 0 regrets about the surgery. The outcome wasn’t what I wanted but that had nothing to do with the approach.

If you decide to do surgery, the only advice that truly matters is finding an experienced surgeon and asking if they personally (and not some student) will be doing the surgery. Experienced means having performed more than 500 but ideally more than 1000 of them.

Good luck.

[lpol83712]

if you haven’t had a DNA test to exclude things like BRCA2 at you young age it should be done. It is free on Promise Prostate study

[CANAMA]

I had surgery at 67 years of age in May 2017 and do not regret it. I have had NED since August 2017 and have been off of all treatments since June 2019. But to be confident you should choose a renowned urological surgeon. I now believe that present day radiation is very effective and is a viable option. If I had to do it all over, I would probably choose surgery by the same surgeon.

[cancerfox]

Only 39 with PC? That's crazy! Anyway, I'm not advocating for either surgery or radiation, it's a difficult personal decision, but be aware that there are also side effects from radiation and the often accompanying ADT, and some of them are very similar to those from surgery. ☹️ Do your research so that you aren't surprised later. Good luck to you! 🦊