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Deciding on treatment

Hunt2871
Posts: 10
Joined: Mar 2018

I was diagnosed with prostate cancer in May of 2016 but apparently I have had elevated PSA results for at least 7 years prior to that (army clinic failed to inform me that my PSA was higher than expected in 2008 only to tell me in 2016).  My original PSA was 11 but I was checked immediately after the results and it was 5.7 in May of 2016.  In February of 2017 it was 6.0, in July of 2017 it was 6.4, in February og 2018 it was 6.2, in July it was 6.4, in February of 2019 it was 6.7 and last week it was 7.4 so the trend is up.

 

I had a biopsy in May of 2016 and was graded 6.6 Tc1.  Genetic testing was as positive as genetic testing can be.  In February 2017 I had a biopsy done at MD Anderson confirming the one done in May.  I had MRI imaging done at MD Anderson which indicated the cancer was contained in the prostate (as good as any testing can indicate this).  I had a Biopsy done at MD Anderson in February of 2018 and it did not find any cancer but that doesn't mean it went away just that they didn't find the needle in the haystack.

 

My father was diagnosed at 63, had radiation treatment and was cancer free for 14 years only to have his come back. He was recently treated with cryo treatment and his PSA is nearly 0 now.

 

All of this is to say I have prostate cancer but it is about as good as it can be and there is the genetic connection. My concern is that I am basically on active surveillance for going on 11 years with the first 8 going without any surveillance because the clinic misread the PSA test and told me I had no problem.  My PSA is going up, I am told I have a large prostate that would have to be shrunk with hormone treatment to benefit from seed radiation, and I don't really like the idea of continued biopsies annually (I have relocated to Washington State and my doctor wants to do them annually where MD Anderson does them every 2 years). 

 

I don't relish the idea of any treatment and the side effects but I would prefer being alive.  I am 53 years old, sexually active and other than urine flow problems I do not have any kind of urinary symptons or problems.

 

I had decided to do the seed implant radiation since it is an out patient thing and I can continued to work.  With the enlarged prostate and hormone treatment I have about decided I don't want to go down that path....I don't like the thought of memory loss and cognitive impact due to hormone treatment.

I am between external beam and prostatectomy.  I am ready to be treated.  I would like to have the best option for a "second bite of the apple" if initial treatment fails or cancer returns in a short period of time.  I can adjust to side effects even if it is incontinence and ED for the rest of my life....don't want to but it beats the alternative.

 

So....which offers the best "second bite of the apple"?

 

I am leaning towarad surgery.  Anyone have any suggestions for surgeons in Seattle?  I had decided to have surgery at MD Anderson in Houston (Dr. Davis) and may do so yet but it is a logistical problem where Seattle is 3 hours away and doesn't involve flying after surgery.  I work at a desk so I do not have a physically demanding job and I have about 3 months leave saved so that is not an issue.  Excellent health coverage, long term and short term disability.  I am just overwhelmed with decisions.....a good thing, given the circumstances, but troubling still.  Any advice?

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi,

Usually with external beam radiation you can only hit the area so many times and your done.  With surgery then you have the option to do radiation as a secondary treatment.  And again if radiation fails you can’t go back for more radiation.  I chose surgery as a first option and radiation if I need it later on.  I am totally recovered with the ED and wear a light pad as a security blanket. My occasional drip or two leak is very manageable for me, but that’s me. Which treatment to choose is always a “spirited “ discussion on this form but the choice is up to you.

You need to look at your test results, talk with your Urologist & Oncologist & family members based on the facts to give you the best chance for a robust recovery.  We can tell you our experiences but your choice is up to you.

Dave 3+4

eonore
Posts: 47
Joined: Jun 2017

Hi,

One question you may want to ask is how a particular treatment will effect your urinary symptoms.  In my case my treatment choice was easy, my prostate was extremely large and my urinary problems were severe enough to require occasional catheterization.  Therefore the prostate had to come out to kill two birds with one stone.  You may be in the same boat.

Hunt2871
Posts: 10
Joined: Mar 2018

"

Hi,

One question you may want to ask is how a particular treatment will effect your urinary symptoms.  In my case my treatment choice was easy, my prostate was extremely large and my urinary problems were severe enough to require occasional catheterization.  Therefore the prostate had to come out to kill two birds with one stone.  You may be in the same boat."

 

Oh yeah, if I get to the point where I am having to be catheterized any way that sucker is out of there.  And I may well get to that point someday but thus far I am able to empty my bladder completely although slowly at times.  I don't wake up at night ever and in my understanding this is a blessing that many men my age (53)  without cancer don't have the luxury to enjoy. 

ASAdvocate
Posts: 116
Joined: Apr 2017

Two points:

1). There are no prostate size limits if you choose high dose brachytherapy. It does not involves seeds, requires two sessions, and has very impressive results. It has been used since the 1980’s.

2) Do not be mislead by the pro-surgery talking point about “two bites of the apple”.

Sure, surgery is difficult after radiation, but, so what? Did you know that cryotherapy , HIFU, FLA, HDR-BT, and SBRT are proven salvage treatments in the event of primary radiation treatment? Now, Protons are also being tested for salvage therapy.

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

You are certainly doing your homework.  At your age, 53, I might just continue Active Surveillance.  If I did not do that, I would opt for external beam.  These decisions are yours.  No two are alike.  I had a RARP in March of 2018.  I am fully continent and have 75% recovered from ED issues without add-ons (Viagra, Cialis).  I am 15 years older than you. You need to weigh out the Quality of Life issues.  To me look at it like this way, if everything goes right (fully continent, no ED issues) for external beam or prostatectomy, which path would you choose.  You have time to clean out the clutter and make the best decision for you.  This cancer does not have any easy paths.  But does have curative ones.  Good luck on your journey.

Hunt2871
Posts: 10
Joined: Mar 2018

"You are certainly doing your homework.  At your age, 53, I might just continue Active Surveillance.  If I did not do that, I would opt for external beam.  These decisions are yours.  No two are alike.  I had a RARP in March of 2018.  I am fully continent and have 75% recovered from ED issues without add-ons (Viagra, Cialis).  I am 15 years older than you. You need to weigh out the Quality of Life issues.  To me look at it like this way, if everything goes right (fully continent, no ED issues) for external beam or prostatectomy, which path would you choose.  You have time to clean out the clutter and make the best decision for you.  This cancer does not have any easy paths.  But does have curative ones.  Good luck on your journey."

 

Thank you.....you are 100% correct.  If I knew now that I'd be "cancer free", fully continent and at least sexually functional within 6 months of either procedure I would go with EBT over surgery.  I am leaning that direction anyway as the specter of penile shrinkage, even if temporary as some studies seem to indicate, is not a side effect I want to think about......having never been the luckiest man in that department any loss there would make the ED problems a non issue as a diamond cutter that short would be an irony that I don't even want to think about Embarassed

 

Isn't that a stupid thing to be concerned about considering the alternative...death???  But it is a very real concern even though it is, I know, completely unimportant in the overall scheme of things.  The mind is a ******* at times!

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

Here is what is happening as far as penile shrinkage post RP.  After the prostate is removed, the part of the urethra at the very top of the penis (it’s called the membranous urethra) retracts into the pelvis, MRIs showed. Anatomically, the tissue surrounding the urethra as it travels from the bladder through the (now-removed) prostate to the tip of the penis, the membranous urethra, and the penis itself act as a single integrated structure. As a result, the shaft of the penis gets pulled up into the pelvis, too. “Slight vertical repositioning of the membranous urethra after [prostate surgery] causes changes in [penis length] over time,” the researchers wrote.

But over the next 12 months the tension in the connective tissues that hold the pelvic organs in place loosens, they explained, allowing the membranous urethra to return to its original, lower position. The penis follows.

https://www.statnews.com/2017/02/13/penis-shrinkage-prostate-cancer/

 

eonore
Posts: 47
Joined: Jun 2017

I wish this was true.  I don’t think I am alone in losing a significant amount of length.  I am now a year and a half post surgery and no length has returned.

Georges Calvez
Posts: 277
Joined: Sep 2018

Hi there,

I think this is one of those things that urologists do not like to dwell on pre surgery. Some men pretty much return to normal and others have a significant loss of length. As we have discussed elsewhere having a big prostate may result in the loss of more urethra and hence length but there does not seem to be a general rule.
The day after the surgery my penis was like a small black button and then for weeks after I had no sensation at all although it was warm so I knew there was life in there somewhere.
Now it is back to normal unerect length, I cannot get an erection because the nerves were cut and my physical sexuality is pretty much dead because of the hormones but it does change size with temperature and when I wash it so there is life in there somewhere.
Maybe it will get a bit more normal after I stop the hormones and if my testosterone returns.
Who knows, a prostatectomy is like a black box to some extent, you can be very lucky when you open it, most get average results and some of us pick a bad box.

Best wishes,

Georges

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

"For their study, physicians at Kanazawa University School of Medicine in Japan followed 102 men who had undergone radical prostatectomy — surgery to remove the prostate — as part of cancer treatment. Using a ruler, they measured the length of each patient’s stretched penis (considered a proxy for an erect one) at room temperature while the men were lying down, before the operation and again eight times over the next two years.

Penis length was shortest 10 days after surgery, having lost an average 0.8 inch from before the operation. The larger the size of the prostate, the greater the shrinkage. But penis length “gradually recovered,” Dr. Atsushi Mizokami, a prostate cancer specialist, and his colleagues reported, until it was “not significantly different from [the] preoperative” length."

No two of us are alike.  If you say there is shrinkage and many others have also.  I personally believe you.  And folks leaning towards surgery should definitely take that as another side effect.

MK1965
Posts: 177
Joined: Jun 2016

eonore,

you are not alone. I had significant loss of lenght of 2+ inches and I never recovered a bit or that. Also I  lost some girth.

This is not anecdotal, this is not myth. It is reality after RP and is experienced by so many patients.

Right after surgery, my penis was visibly shorter of at least 1 inch and I continued to loose lenght afterwards.

I still have visible signs of shortening. my meatal opening lips are still caved in with part of glans also looking caved in.

That is tension sign of urethral connection to bladder neck and I am sure that is what caused lenght loss.

BTW, my prostate was small, only 38 grams. So, that is another clue that prostate size does not predict loss of penile length.

MK

 

Tech70
Posts: 53
Joined: Nov 2017

You stated that genetic testing was "as positive as genetic testing can be." If it was Oncotype DX testing, what were the GPS scores?  If they were less than 20, then there's very little chance of your cancer ever metastasizing.  At this point, why roll the dice on possible side effects of surgery, particularly at your age and sexual activity.  The one good thing about AS is that it is a totally reversable decision at any time.  Also, with each passing year, more and more treatment alternatives become available.  As for the yearly biopsys, I would look for a different urologist, and and if they are painful, DEFINITELY find a different one.  I had my 3rd. biopsy YESTERDAY and it was essentially painless except for about an hour's worth of mild discomfort in the perianal area afterward.

Clevelandguy
Posts: 456
Joined: Jun 2015

 Hi,

Had my robotic surgery almost five years ago and I don’t realize any difference in length.  Of course I was never that concerned about my length.  As long as my cancer is gone I don‘t care if a I lost any length.  My size is between my wife  & I and she has not complained about it.  I have always been a private person so I don’t go walking around locker rooms with my member on display.  You guys keep talking about this like its a big problem, yeah maybe if your a porn star.  A loss of an inch or two and no cancer is not a bad trade off in my book.  My friend once told me use it or loose it so maybe the lost length is coming from not having the blood engorge the penis to expand the tissue?

Dave 3+4

eonore
Posts: 47
Joined: Jun 2017

 

”You guys keep talking about this like its a big problem, yeah maybe if your a porn star. ”

 

Since you are lucky enough not to have suffered this problem, I don’t know why you feel the need to belittle those who have.  In any thread where I have mentioned my loss of length, I have never complained about it.  I have merely stated it as a potential side effect, one that is not always mentioned by medical staff.  I will also add that, without going into specifics, having a shortened penis has caused some bathroom hygiene problems that didn’t exist before the surgery.  You may want to try being less judgmental.

 

Eric

 

 

 

 

 

Bugs Bollox's picture
Bugs Bollox
Posts: 20
Joined: May 2019

There’s lots of good advice here. Mine is to get two or three opinions. Don’t just talk to a surgeon. See a radiation oncologist and a medical oncologist. Get different perspectives. And don’t dismiss any treatment option until you really understand your choices and the possible outcomes. You’ve got time. And you don’t get a do-over. 

Clevelandguy
Posts: 456
Joined: Jun 2015

Eonore,

Not trying to belittle anyone,  I would glady give up length if I knew it would get rid of my cancer.  It seems like some people here use it as a downgrade to having surgery but I don’t think it’s that big of a problem.  If my doctor would have told me I might be a little shorter I would have been OK with that.  I might even be a little shorter but its not noticeable to me.  I guess after fathering two children and having an understanding wife it would not be anywhere near a bad point for having surgery in my opinion.   We all have different views and opinions and that’s what makes the world go round.  Not being judgmental, just giving my view point on some of the side effects from a person who has experienced surgery. In dealing with cancer I feel that the length issue is very minor compared to getting rid of your cancer and hopefully living on for years, to other men it might be a huge reason not to have surgery. We’re all different.

Dave 3+4

eonore
Posts: 47
Joined: Jun 2017

No problem Dave.  Like you, my primary goal is getting rid of cancer.  Even had I known about the loss of length before surgery, I still would have gone through with it.  However, I am 67, in a totally committed long term relationship of 35 years.  It isn’t that big a deal to me.  On the other hand, if I was younger, single and in the dating market, who knows.

 

Eric

Clevelandguy
Posts: 456
Joined: Jun 2015

Yeah I think people sometimes get so enthralled in the side effects they forget the main goal.  To me the most important goal is to get rid of the cancer via surgery or some form of radiation. Just about every method of treatment has certain side effects, just have to pick the one you feel effect your particular quality of life after treatment.

Dave 3+4

Bugs Bollox's picture
Bugs Bollox
Posts: 20
Joined: May 2019

The thing with prostate cancer is that there are several ways to treat it and each treatment comes with its own set of side effects. And unless you have a particularly difficult or aggressive cancer, they all have very similar success rates. It's worth taking the time to get all the facts; there are no do-overs.

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