Any prostate cancer survivors out there. Little help

[Gintonious]

My Dad had this as well and he is grand and healthy.

You can look into a prostate formula from a chemists or health shop, I take one myself to keep things in check as my chance of getting it as I am older rises.

Above all keep the head up, get great healthy food into your body and stay positive. It will be gone before you know it.

[guzzi4me]

 
I'll be hyperventilating when I open the email in a couple of days. I am 2 months over due for blood work. I hate this part.

I'm sure everything will be OK!

Jeff

[Testarossa]

Biopsy negative!! No cancer!

That said, the 27 holes they punched made the gland swell up so that nothing gets through. Wearing a catheter for another week and gobbling ibuprofen to shrink it. Grumble.

But cancer free!

[Chuck in Indiana]

Alrighty now!!  ;-T ;D ;D

[dilligaf]

Wonder why 27? 12 were enough to get my attention and do the job. :BEER:
Matt

[jdgretz]

Unfortunately I'm coming late to this discussion...

I was diagnosed with Prostate Cancer in 2008 with surgery recommended.  PSA was somewhere in the 6+ area and a Gleason of 4 + 3.  After looking at all the options, I was not happy with any of them until, by chance, I was pointed to Loma Linda University Medical Center (LLUMC) and their Proton Beam Treatment Center.  Man, what a life changer.

The Proton Center uses a very narrow and tailored beam that only interacts with the prostate and the cancer cells.  Little to no damage to other organs.  Little to no side effects for most patients.

My treatment was scheduled for 45 days. Five days a week for 9 weeks.  I spent 15 minutes a day at the business end of a nuclear particle accelerator.  Drove home each day after treatment and carried on as usual.

The original Doctor said that about 1 in 3 surgery patients have the cancer return.  That sounded weird to me.  Why would it return if the prostate was removed?  The physician at LLUMC sort of said the same thing, but elaborated in that about 30% of the time, some cancer cells escape the prostate and thus regenerate the cancer. Hmm, OK.  In my case he requested an MRI because of my numbers and where on the prostate the cancer seemed to be focused.  I turned out to be one of that 30%.

My treatment was modified to 25 sessions in Proton and 20 in conforming beam x-ray.  Still not as bad as generic radiation treatment as the beam is much more focused with minimal damage to the surrounding tissues.

They have a new protocol for those caught early enough or with the "right" scores - 20 treatments.  Yeah, less than half the original treatment protocol.  Worth looking into.

The bad?  I had one day where it felt like I was passing a kidney stone, and after about the second week, I started feeling tired, which is not unusual, and I did have one hormone shot (six month long lasting).  Apparently high testosterone levels aggravate prostate cancer.

Today, I'm still cancer free with a PSA of .something.

LLUMC will send you a booklet and DVD describing the treatment and a book written by Robert J. Marckini "You Can Beat Prostate Cancer: And You Don't Need Surgery to Do It" relating his experience and research into the various treatments.  This book is a must read for anyone wondering about treatment options.

Please, please, please, call LLUMC and get a copy of this book.

There are now a number of other places with Proton Beam Therapy Centers so a trip to SoCal is not a necessity.

The environment at LLUMC is amazing.  Unlike other cancer treatment centers, everyone is upbeat and looking forward to their treatment.  Friendships are formed, golf buddies found, and a family of survivors welcomes you.  Basically, if you are accepted to the program, you will walk out of there cured.

Since I just skimmed this thread, one thing deserves mentioning, or repeating of it was already mentioned.  Motorcycle riding will artificially inflate your PSA scores.  Do not ride motorcycles, or bicycles for at least 72 hours prior to having a PSA done.  In many cases, it can easily double your PSA and cause uncalled for anxiety.

So to sum up; No incontinence, no impotence, no diarrhea, no restrictions on my activities, and cancer free.  Well, to be honest, I'm still a little frightened of balloons.

Hope that helps.

Feel free to email or PM me if you want to know any more.

jdg

[dilligaf]

 :bike Yes, that is a great help as this is the treatment that was recommended for me and, with the exception of the 30% return rate, is what the doctor told me.  Your PSA (PSA was somewhere in the 6+ area and a Gleason of 4 + 3) and mine are identical. (They have a new protocol for those caught early enough or with the "right" scores - 20 treatments.) I was also informed about this but was advised they were waiting on the Medical University of SC, not sure what that was about but my impression it was being looked at but...........lots of information coming at me all at once.
My primary care guy and a good friend retired from  Navy medical  both recommended I get a second option and the primary care guy also recommended I talk to my buddies for their input. So, I put everything on hold and started this thread. When I return from the Swamp Scooters rally prostate cancer and it's treatment will move to the front burner.  :BEER:
Matt

[dilligaf]

After reading your inputs and talking to three Urologist looks like, assuming I want to treat the cancer, Intensity-modulated radiation therapy (IMRT) is the way, for me, to go.  I have complete confidence in the folks running the show and am confident of a positive result.

NOW based on the following:  Most men die with prostate cancer not of it.
I'm 75  and have outlived both of my parents and most of my aunts and uncles.
The IMRT treatment will be five days a week for six to eight weeks. It's 70 miles round trip.  That a total of 2100 to 2800 miles in heavy traffic.  That fact alone increases my chances of dying with prostate cancer not of it.

For me the idea of doing nothing is just a good an idea of doing something.

The technician running the show rides a 1983 R65 he purchase new.  ;D  :BEER:
Matt

[dilligaf]

 P:) A word of warning to all you folks who are using testosterone gels and so forth.   ::( When I was diagnosed with Prostate Cancer first thing I did was stop using this stuff.  PSA has dropped from 7.6 to-get ready for it-2.7.  ;-T We've gone from getting ready to start EBRT to forgetaboutit.  We'll just keep an eye on it.  See you in three months. Daaaa

Well maybe you will and maybe you won't. If memory serves me correctly you were the Doc who said there were no studies to support that testosterone supplements increased or caused prostate cancers.  I couldn't find any studies that said testosterone supplements were of any value and chose to error on the side of caution.
 :BEER:
Matt 

[redrider90]

P:) A word of warning to all you folks who are using testosterone gels and so forth.   ::( When I was diagnosed with Prostate Cancer first thing I did was stop using this stuff.  PSA has dropped from 7.6 to-get ready for it-2.7.  ;-T We've gone from getting ready to start EBRT to forgetaboutit.  We'll just keep an eye on it.  See you in three months. Daaaa

Well maybe you will and maybe you won't. If memory serves me correctly you were the Doc who said there were no studies to support that testosterone supplements increased or caused prostate cancers.  I couldn't find any studies that said testosterone supplements were of any value and chose to error on the side of caution.
 :BEER:
Matt 

I was one person who said there are no studies that link testosterone supplements to prostate cancer. And I stand by that statement. I was diagnosed 2001 and treated in 2007-2008 with estradiol and IRMT. I have been very active in a couple of boards includes one with a very good urologist on it. I have read numerous studies that have said there is no link to T supplementation and PCa. I have not found one study that has shown a link of T supplementation to prostate cancer.  It is well known that in hormone sensitive prostate cancer  total ablation to castrate levels of testosterone is one of the first lines of treatment. But total ablation of T to suppress prostate cancer does not mean that men who receive low T therapy have an increased risk of it. One does not follow the other. I am not suggesting there is any value in supplementation.
The are a few articles suggesting that low T actually increases the possibility of cancer. The interaction is very complex with multiple hormones involved. It is not just testosterone alone acting on the cancer. 
I suggest looking at the national institute data base if you want more information. You can find it @ http://www.ncbi.nlm.nih.gov/pubmed/
You have ceased supplementation and a sizable drop in your PSA which is indeed good news. But how much testosterone is your body producing. Are you castrate? Maximum suppression of cancer occurs at  serum testosterone level of lower than 20 ng/dL. If you indeed that low without using exogenous hormone suppression then you indeed have the chemical equivalent of Lupron or as in my case I used high doses on the female hormone E2 to achieve ablation.  But if you are not castrate then you are still making testosterone. Also many of front line docs also check DHT, dihydrotesterone which is 10 times more powerful than testosterone. These docs well often use a drug like avodart to reduce DHT which is well known to fuel prostate cancer as well as enlarged prostate. 

[Sasquatch Jim]

  Drink Kambucha.  The Kava bar has it on tap.

[dilligaf]

Jim, that's tea.  ???  :BEER:
Matt

[Sasquatch Jim]

  It's fermented tea,  very medicinal.  And tasty, I like mine with a touch of ginger.  Think ginger flavored vinegar.

[redrider90]

P:) A word of warning to all you folks who are using testosterone gels and so forth.   ::( When I was diagnosed with Prostate Cancer first thing I did was stop using this stuff.  PSA has dropped from 7.6 to-get ready for it-2.7.  ;-T We've gone from getting ready to start EBRT to forgetaboutit.  We'll just keep an eye on it.  See you in three months. Daaaa

Well maybe you will and maybe you won't. If memory serves me correctly you were the Doc who said there were no studies to support that testosterone supplements increased or caused prostate cancers.  I couldn't find any studies that said testosterone supplements were of any value and chose to error on the side of caution.
 :BEER:
Matt 

From a study at John Hopkins titled "Surprise: High-dose testosterone therapy helps some men with advanced prostate cancer"
The finding, by scientists at the Johns Hopkins Kimmel Cancer Center, is reported in the Jan. 7 issue of Science Translational Medicine.
http://www.sciencedaily.com/releases/2015/01/150107204449.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Fprostate_health+(Prostate+Health+News+--+ScienceDaily)


Also FYI
"Low testosterone levels may indicate worsening of disease for men with prostate cancer".
http://www.sciencedaily.com/releases/2014/05/140505094213.htm

[Orange Guzzi]

No new comments in several months?

My turn.  I was sent to the urologist for high PSA last week. Yeah.  My PCP did not mention anything to me about my psa.  She just said go see a urologist as part of my physical.  When I got there, the doctor told me it is high.  I had no clue what he was talking about or why he ask me to go get a MRI with and without contrast.  Going Monday night for mri. 

I read all the post here and other information.  My take, my pituitary gland is not sending a signal/hormone to my prostate telling it to convert the DHT to testosterone.   The excess DHT causes swelling of the prostate and blockage of the urethra. I do Hormone replacement therapy too makes up for the lack of testosterone production. 

The second thing I read not mentioned here, the prostate tissue becomes damaged and does not heal its self.  Don't laugh, but the report I read said this is cause by excessive ejaculation/over use.  Strike up "Too all the Girls I Loved Before".  I mean, before my wife.

Another report I read said that massage/milking the prostate to force excess DHT and relieve pressure on the urethra  helps reduce swelling.  As if I do not have enough reason to chase the Wife around the house.

One thing I have learned over the last couple of months, People that buy vodka by the gallon are living a happy, pain free life and are facing the fact that no one gets out alive.  Even if they may not live as long, they are living a less stressful life and spend less time dealing with doctor visits and insurance company idiots that know what is best for them. 

So, on that note, how are you all doing with your swelled up prostates?

Happy New Year.

[Aaron D.]

My doctor with her previous clinic tried to get me to have a PSA test during a physical, I declined.

She is at a new clinic that considers it a waste. We get a laugh at that.

She does the DRE, no problem detected. If one is found I may do the MRI, or not.

I will never do another colonoscopy again either. Had two, conscious  both times so I can tell you it is a barbaric procedure unsuitable for a screening test.

[antmanbee]

My doctor with her previous clinic tried to get me to have a PSA test during a physical, I declined.

She is at a new clinic that considers it a waste. We get a laugh at that.

She does the DRE, no problem detected. If one is found I may do the MRI, or not.

I will never do another colonoscopy again either. Had two, conscious  both times so I can tell you it is a barbaric procedure unsuitable for a screening test.

Many screening tests are ineffective for reducing the death rate for what they are testing for. And frequently they either cause harm by the test itself or lead to over-diagnosis and over-treatment causing significant harm in the over-treatment and side effects from the treatment. PSA, colonoscopy and mammograms are three prevalent screenings in this category. However these tests are of great benefit to some, primarily the doctors and clinics and pharmaceutical companies. It is a multi-billion dollar business.

Here is a letter to the NYTs by the inventor of the PSA test.
http://www.nytimes.com/2010/03/10/opinion/10Ablin.html?emc=eta1

Reduce your risk by lifestyle changes that have only positive effects, no side effects and cost nothing to implement.

Linked is a study in the THE JOURNAL OF UROLOGY in 2005 by AMERICAN UROLOGICAL ASSOCIATION regarding reducing PSA through lifestyle changes.
https://www.ornish.com/wp-content/uploads/Intensive_Lifestyle_Changes_and_Prostate_Cancer.pdf

Adopt a diet that protects against colon cancer not causes it. Eat a diet that is high in fiber, unprocessed or minimally processed with minimal or none of the known cancer promoting foods.
There are other tests besides a colonoscopy that are much safer and less or non-invasive. Hemoccult II (stool for blood) and SIG (sigmoidoscopy) are better choices. If these tests are positive then a colonoscopy will probably be needed, but as a screening for everyone should not be needed.

[Ncdan]

I go for a biopsy next week, my PSA has been slowly rising and is up to 5.4 now.  I'm just concerned now with how bad the biopsy will be.  :-\

A good buddy just had the biopic did a couple weeks ago. He said he was given the option to be sedated or not and opted not to be. He said he regretted the choice and that if he ever had to have another procedure again he would be out!

[trippah]

Now that its the new year, I can report I had radiation treatments five days a week for 8 weeks.  PSA scores have dropped to small level and still heading lower.  I didn't want to risk the side effects of the surgery and as my cancer was located in front left quadrent, radiation seems the way to go.  While undergoing the treatments I had no real side effects other than a little tiredness during the 6th week, but at 70 I decided an afternoon nap wasn't  out of the question. I will note that the first few time urinating and the other main function of the system, seeing a bright red all blood discharge was bit unnerving.

My medicare, medicare supplement and occasional Tricare for life picked up the tab completely.  If you are a vet and  served in Vietnam (as I did) I have heard that the VA considers your tour as the cause of your PC....so if money is an issue, and you have access you might want to consider checking with them if that rumor is correct.

Its been 5 months since my last treatment and I have a follow up appointment next month, so time will tell.  Good luck to all.

[redrider90]

No new comments in several months?

  My take, my pituitary gland is not sending a signal/hormone to my prostate telling it to convert the DHT to testosterone.   The excess DHT causes swelling of the prostate and blockage of the urethra. I do Hormone replacement therapy too makes up for the lack of testosterone production. 


Happy New Year.

The prostate does not convert DHT to T. Prostate cells have receptor sites to T and DHT hence you find DHT in the prostate which fuels enlarged prostates. Some docs also believe DHT fuels PCa and there is some good literature showing that.  DHT is synthesized from testosterone by the enzyme 5α-reductas; approximately 5% of testosterone undergoes 5α-reduction into DHT.  Serum DHT levels are about 10% of those of testosterone, but levels in the prostate gland are 5- to 10-fold higher than those of testosterone due to a more than 90% conversion of testosterone into DHT by locally expressed 5α-reductase. For this reason, and in addition to the fact that DHT is much more potent as an AR agonist than is testosterone, DHT is considered to be the major androgen of the prostate gland.
DHT is far more potent than T thus using drugs like avodart and proscar are used to reduce 5a-recutase to reducing DHT. Also drugs that reduce T like Lupron used in PCa androgen depravation therapy(used in PCa treatment) also can reduce DHT by reducing T. Estradiol also reduces T and thus reduces available T to convert to DHT. Not all men respond the same to androgen therapy and hence may have castrate levels of T yet still produce high levels of DHT.
SHBG, sex hormone binding globulin also reducing DHT as it attaches to the receptor sites rendering T inactive. SHBG also reduces bioavailable T.
I used high levels of estradiol as an androgen depravation therapy combined with radiation that has a synergistic effect. It also reduced my DHT and T significantly. After 12 months of estradiol therapy my prostate size reduced from a massive 112 ccs to 75ccs: still far above normal.
See Wikihttps://en.wikipedia.org/wiki/Dihydrotestosterone

[Chuck in Indiana]

To make a long story short, yes Ihad it. PSA kept going up, many negative biopsies. The last biopsy was when it read 22 or so. Finally found 4 places in an unusual location, Gleason 6 &7. When doing routine screening for surgery, they found an inoperable cancer on my left kidney, to boot.  That was kind of a surprise.
Fortunately, one of Dorcia's best friends is a doctor, and she said, "We have to get him in to Tom." Cutter number 1 said there was no way to take them both at the same time. Tom said no problemo. Did it with a robot, removed and bagged the kidney while removing the prostate, took both out at the same time from one incision.
I was fortunate, neither had spread, and were unrelated.
Oh, you think a digital exam is uncomfortable? Try a 45 minute MRI with an inserted probe..
I was back to riding in 6 weeks, PSA is now zero.

[sidecarnutz]

My dad had prostate cancer at age 89. He lived in Jacksonville Fl. where they had access to early proton beam therapy. He used that and beat the cancer! Very few side effects as well. He made it to almost 91 before his heart failed him.

[Chuck in Indiana]

They "had" proton beam in Indy, but took it out a couple of years ago. Apparently, it didn't make enough money. <shrug>