47, Robotic Prostatectomy April 26 @ Mayo

For some reason a lot of Surgeons like to sugar coat the side effect of having your prostate removed. I had mine removed in 2016 and had no incontinence problems. I did have a retraction of the penis and am not able to achieve an erection without help. I am able to enjoy a sex life with my significant other but it is very different than before. But I am glad that my cancer is completely gone and that I have my life

Hello Aaron,

I have not posted for a long time but read your story and felt compelled to reply.

First off, don’t panic and get several doctors opinions.  Your urologist will tell you to have your prostate removed as that is what they do and in most cases all they really know.  If you decide to go down that path, make sure you have the best/most experienced urologist available (even go out of state if necessary). The outcome and recovery is directly related to the surgeons skills.

My situation was almost identical to yours.  However, even though my urologist told me my only choice was a prostectomy, I did months of research and decided to have a procedure called High Intensity Focused Ultrasound (HIFU).  I experienced virtually no side effects and was able to resume intercourse several weeks after the procedure.  As a matter of fact, I had an erection the day after the procedure.  There was no cutting, however I did experience pain for several days and has a catheter for over 2 weeks.  But I can tell you, after 2 weeks, it was almost like it never even happened.  (You won’t get that kind of result with any other procedure except maybe MRI guided Laser.  

Some guys just can’t handle knowing they have cancer and physiologically just have to have their prostate removed.  If that is you, then go for it and I support you 100% but just know that removal does not guarantee that you will be cancer free.  No procedure can make that guarantee.  I would suggest you have a full body bone scan to make sure there are no signs a metastasis before you have a prostatectomy (if you decide to go that route).

HIFU is not radiation and therefore does not have the long term drawbacks associated with those procedures.  HIFU is also repeatable if the cancer comes back and also does not exclude any other procedure if you decide to choose another option down the road if ever needed.  HIFU is often an option for men who have opted for radiation treatments that have failed.  HIFU has been available for close to 20 years in other countries but only recently approved in the USA in the last 2 years.  The long term results have been good and as with all procedures has improved over the years.  The Biggest drawback is the cost is not covered by most insurance (although that is changing) and the cost is about $25k.  I actually got a 2nd job to payback the cost and in every way it has been worth it.  I could not be any happier with the results.

Good luck to you.  Be your own best advocate as no one else will. Do not let the urologist tell you what you do and don’t qualify for.  Talk to each specialist see what they offer and let them tell you if you qualify for their procedure and then pick the procedure that you feel you can live (the rest of your life) with.  Know the short term and long term side effects of each procedure.  Then and only then can you make an educated decision on what will be best for you.

God bless and...long live the prostate!

There are many better methods for destroying prostate cancer with less side effects.

Consider Focal Laser Ablation (FLA), of focal MRI guided ultrasound ablation (MRgFUS). Both have minimal side effects.

(not HIFU)

In Europe they use focal irreversible electroporation for prostate cancer.

Or look at Tookad.

GL3+3 is almost normal. get at least 2 other opinions and an MRI on a 3Tmp scanner.

your pathologist probably saw "indolent" cancer cells that sit there and do absolutely nothing forever. PSA 7+ is nothing compared to 300-800....i've seen guys with 5,000... where the cancer has metastasized into other organs. Keep your gland, bro. it's your "comer" and don't let anyone tell you different.

I had a very similar diagnosis to yours (3 + 3) over 10 years ago. I've had no treatment. My cancer has not developed. My prostate is presenting other problems, ( I'm 67 ) but it is still in my body largely doing what it's supposed to do. My PSA went up to 12, it is now 6.

You can live with prostate cancer as long as it is carefully monitored.  Every case is unique. As others have advised, don't go for removal out of blind fear. Sometimes it is worth holding back. Many prostate cancers are almost benign.

Many believe that a 3+3 should not be classified as cancer as it is usually so benign and does not usually progress. I would definitely do more research before you decide on Prostatectomy. Especially, look into the probability of a 3+3 progressing into something more serious.

Good luck

Hi. With your situation, which was similar to my own and as previously stated, HIFU treatment could well be the way forward. I had the day case treatment and virtually no side effect.

I contacted UCL hospital direct who told me that I was suitable for HIFU.

I then told my hospital that was the treatment I wanted for my cancer. It had to go to MDT panel who agreed and I was referred to the hospital.

You need to research it.

Good luck

 

Hi Aaron,

Your doctor is nuts!

with a G6 in only 1 core and a psa of 7, I would find an experienced urologist.

You need to deal only with specialist in prostate treatments.

look into FLA, HIFU, CRYO. That is the last option to have the prostate removed.

You're too young to deal with the problems after surgery. Don't do it.

 

Aaron,

What state do you live in?

A lot us on this site know of specialist in different areas.

We're willing to help you find great doctors.

Aaron,

News about Ca is never good. Being diagnosed with Prostate Ca Gleason 6 in 1 core is something that you have carefully decide if you want to treat it at all. RP surgery at your age will destroy your sex life and greatly change your QoL which will impact you physiologically and mentally for the rest of your life. Read and research about sexual function recovery and you will find that meaningful recovery of sexual function at the best is in 10-20% range, not in 50-80% as many urologists will tell you. And at the best recovery, your sex life will never be even close to same what it was before surgery.

Many posters expressed the same in above posts which means something. Is is not many who recovered to pre surgery level. AS in your case would be the most appropriate treatment which will save you trouble and give you enjoyable years of good sex life and you won’t miss window of opportunity if treatment becomes necessary.

On the other hand, if you stay with your choice to have prostate removed, you will see that penile rehabilitation is extremely expensive business which is not covered by insurance companies in USA. You will be spending lots of money and be waiting for results to happen.

I had RARP on 11/2/16 with lymph nodes dissecting for Gleson 4+3. At 16 months post surgery my penis is dead as it was when I awoke after surgery. I lost 2+ inches of length and lots of girth so my penis looks pathetically small like when I was 11 years old. BIMIX gives me some kind of erection but I do not have sufficient tool to perform. Very frustrated and disappointed.

i did not want surgery but urologist did not want to accept me into AS because of 4+3.

I expressed it many times and will repeat it again; I wanted to be in AS even against medical advice.

Now, is to late. Damage is done.

I was 51 at time of surgery and never had any problems with achieving and maintaining erections. I am very healthy, not on any medications, non smoker and non drinker, not overweight, excercising regularly. Now for any physical activity like running, lifting, officiating games etc, I have to wear pad in my compression shorts.

If you are not into QoL than you won’t have problems to adjust to SE which follow Prostate removal.

Best luck with you choice.

MK

 

Aaron anytime someone cuts on you please go get a second opinion. Also, a great U man will have you do a blood test first and than 3t MRI before biopsy. After biopsy that U man should have sent off your samples to a genetic testing lab to determine if it was high or low grade cancer. Also, the pathology report should be sent off to another hospital for a second opinion.  Most young guys have low grade cancer and are now on AS. Go do your research and listen to your blog team below. We all been through it and sites like this help you make the best educated decision. 

Lastly I would also do the laser abalation before any RP. Keep your prostate man.  Any cutting should be last option on the table. Good luck.

Hi Aaron,

Sorry for your diagnosis.  We are in similar situation.  I was diagnosed in December with Gleason 6 prostate cancer, 6 cores out of 12 tested were positive for cancer. Surgeon indicates it is contained in the prostate.  However, before I schedule surgery, I am going for an MRI in a week.  The MRI will confirm the amount of cancer and will help me decide when to book the surgery.  For example if the MRI supports the biopsy results then I may hold off on surgery until later this year or even early next year.  Prostate cancer is very slow growing.  However, if the MRI suggests there is more there than what the biopsy shows, I will be going in soon.

I would like to prolong the physical issues as long as possible.  I am only 50 so I appreciate how you are feeling.

All the best,

You have probably noticed the consensus by now. Do not rush into anything you might regret - especially RP.

​Good luck