Happy 50th B-Day, you have Cancer !!

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Happy 50th B-Day, you have Cancer !!

by peanutdrd on Tue Oct 27, 2015 08:32 PM

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My name is Darryl and I just turned 50 on Sept. 4th.  Went for my annual checkup and was called a day or two later and told my PSA number was 6.8.  My PCP advised me that I could wait a 3-6 months and get tested again, or I could go see a Urologist to figure out what was going on.  I decided on the latter and made an appointment with Urologist.  He did a DRE and advised that my prostate was normal in size for someone my age, but he felt several hard spots.  He reccommended that I have a biopsy done.

My biopsy results:  Adenocarcinoma 3+4=7, broken down as follows:

A:LLB 3+3=6 10% of 1 core

B:LLM 3+4=7 25% of 1 core

C:LLA 3+4=7 25% of 1 core

D:LB  Benign

E:LM 3+4=7 40% of 1 core, 10% of second core

F:LA 3+4=7 50% of 1 core

G:RB 3+4=7 50% of 1 core, 10% of second core, 10% of third core

H:RM 3+4=7 50% of 1 core

I:RA Benign

J:RLB 3+4=7 70% of 1 core, 10% of second

K:RLM 3+4=7 3+4=7 80% of 1 core, 10% of second

L:RLA Benign

Doctor wanted me to have a Bone Scan and Cat Scan next.  I have been unable to get these done as I lost my insurance for the month of October, but will have insurance again starting Nov. 1st.  I am planning to go see my PCP again to get referred to another Urologist or whoever will help in addressing this issue. I cannot goto the original Urologist as he is not on my new insurance plan.

After doing a considerable amount of reading and reasearch, I have come to the conclusion that I am very young for this type of cancer.  I have read about late 60's to early 70 year old men with 20% of 1 core out of 12 taken having Radical Prostectomies.  The only positive thing I can think of is that I have ZERO symptoms of any problems.  I am sure Radiation and/or Surgery will be in my near future, but the side effects of both scare the crap out of me.  Any advice or opinions on Radiation or Surgery (or combo of both) would be appreciated.

I go to my PCP on Monday Nov. 2nd and will post an update after that visit.

Thanks

Darryl D.

RE: Happy 50th B-Day, you have Cancer !!

by shipl on Wed Oct 28, 2015 10:29 PM

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Hi Darryl,

It's not unusual to have zero symptoms, when I was diagnosed a year ago today, I was 68, Gleason score of 8 & apart from PSA of 12+ I had no symptoms. I seem to have my PC under control at present on various alternate programs.

I refuse to have surgery or radiation as at my age the  side effects & after effects are just not the quality of life i'm looking for. Apart from the PC I am in excellent health, still working & very active, a direct result of the diet & suppliments i take  

Given your age, a PSA of 6.8 & a Gleasson of 6, you have a time on your side, time to watch, wait, investigate & reseach. Things have changed in relation to biopsys in using  MRI & ultrasound in last 12 months, there are new developments with PC all the time, unortunately one size doesn't fit all. One new treatment that I suggest you research is the NanoKnife which I noted has been successful in UK & more recently here in Australia.

Only we can decide what we do to & put into our bodies.

Good luck & take care. Cheers Charlie  

RE: Happy 50th B-Day, you have Cancer !!

by DarrylB on Thu Oct 29, 2015 12:04 PM

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Hi Darryl

Unfortunatly you have been diagnosed twenty yrs too early.  In time i am sure we will just have to take a pill and it will be all over.

I have had a robotic prostatectomy in 2010 and I had a gleason 6 cancer, I was 54 at the time.  I was promised I would be back at work in two weeks, erections would work just fine and I would be continent in about 3 months... to date I have lost well over 4 months off work, spent $40,000 plus (AUS) out of pocket expenses and have had to have 3 additional operations to fix the results of the robotic surgery. and now I have advanced cancer! AND I have lost my QOL with regard to continence and ED.

I found out too late that robotic surgery does not produce the results of open surgery and there is a growing trend away from it. Apparently it has a poorer cancer clearance result than open surgery as well. I understand manipulation (robotic pliers etc with no tactile feedback) may be contributing to higher failure rates.

There is no way I would recommend robotic surgery. I contacted Bert Vorstman in the US and he stated my results are quite common for robotic surgery.  He stated that it's not if you get complications but what comlications you end up with. As you would expect I attend support groups to help me understand what is happening and I find out I am not alone and that other men have very similar stories.  It seems the xtreme angles your body is placed in and abdominal access with trocars cause all sorts of problems ranging from heart attack, puntured bowels from the verus needle to adominal adhesions. Apparently adhesions happen whenever the stomach wall is punctured and occurs in about 97% of stomach wounds. The adhesions range from tissue paper types to strong fibrous bands that can choke your bowels... great isn't it? I ended up with a permanent diastasis recti (abdominal wall muscle stretched by too much gas pressure) and huge incisional hernia above my naval and now have a 6 inch X 8 inch mesh inside me, this has left my right side stomach muscle with atrophy as well. torn hip ligaments, pudendal nerve damage, surgical clip migration into my bladder in two spots and one clip migrated through my bowel ad was excreted. And I find out that this is also normal... no body told me about these little gems.  I understand a robotic surgeon has to have done about two hundred surgeries in a short period to produce a results of a standard open surgery doctor.  I was my doctors 186th patient!

Bert Vorstman wrote an article you may be interested in http://www.urologyweb.com/robotic-prostatectomy-complication

I don't know a lot about radiation except it will give you ED and what symptoms you get within the treatment period will come back about 3 yrs later as a permanent feature. I understand bladder cancer is common about 7 yrs later as well.

My brother had Brachy therapy and for the first year his life was hell but he seems ok now.. and no ED, that was 4 yrs ago. His PSA is now .02.

I would investigate focal therapies rather than radical type treatments....

I hope I haven't scared you too much and I am sure there is good news stories out there somewhere ... i just don't know any..

If you send me a private message I can send you the questions I should have asked but didn't.

all the best

DarrylB

RE: Happy 50th B-Day, you have Cancer !!

by philbo55 on Wed Nov 04, 2015 03:06 PM

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Hi Darryl, I am sorry that you got this news. It is never easy hearing that you have prostate cancer at a young age for what is oft coined as an old man's disease -very frightening. I was 45 years old when it was discovered, I had 3+4 gleason with a PSA of 20 initally.  Seems so long ago that I began this journey, now I'm 60 years old.  At that time in my life sex was everything. I was very concerned about losing erections, incontinance.  I went on horme therapy for 9 months before I had the retro pubic prostectomy. I was good for 5 or so years before my psa started to rise again. I should mention I had the nerve sparing type of surgery when my prostate was removed. That was successful and with the help of viagra and or the other meds availble I was able to get erections back 6 months post surgery.  The good news is that you are young and there are so many new developments, exciting ones that are coming.  Considering your gleason score I would not delay going on one of the hormone therapies immediately pre surgery. Do your home work on surgeons if you have a choice and join a local prostate support group where you can meet other local men and hear their experiences and get the name of a good doctor. I did this and found the best surgeon in my province of BC.  He had one of his interns actually do the surgery and I am very happy to say that even now all these years later I can get erections if I want to.  Wishing you all the best. Each decision is yours to make. I have no regrets. ( I was told if I did nothing - no surgery etc. I'd live 5 years).    

RE: Happy 50th B-Day, you have Cancer !!

by DebraRNATL on Fri Nov 06, 2015 07:49 AM

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Darryl

You have an aggresive form of prostate cancer, however, it is not as bad as it could be. You should not be delaying for too long.  At the very least, you should have started on Casadex.  it is a cheap drug that will decrease your testosterone levels.  Testoterone is fuel for prostate cancer.  Start on a ketogenic diet for cancer.  Sugar feeds cancer.  i know that sounds like voo-doo, but it is not.  Just google it.  In fact, a PET scan finds cancer by looking for glucose metabolism.

Don't fall through the cracks...get more aggressive to get what you need.

RE: Happy 50th B-Day, you have Cancer !!

by peanutdrd on Fri Nov 06, 2015 11:42 PM

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**UPDATE**

Saw my PCP.  Have 2 CAT Scans & Nuclear Bone Scan scheduled for Tuesday.  Will then goto new Urologist the following Tuesday to figure out what to do.

Thanks 

Darryl D

RE: Happy 50th B-Day, you have Cancer !!

by DebraRNATL on Sat Nov 07, 2015 06:46 AM

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Keep us posted!  God Bless!

RE: Happy 50th B-Day, you have Cancer !!

by helper2 on Mon Nov 16, 2015 05:10 PM

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My husband also turned 50 and discovered he had prostate cancer.  This was a shock because he is very healthy, exercises and eats well.  But his father had pc at around age 52, which in the end he died at 69 from the cancer spreading. My husband had no symptoms, but his PSA had risen slightly to 3.0 then while having sex, we saw blood in his ejaculate.  Scary to see, so off we went to a few drs who suggested biopsies, surgery, etc.  Researched A LOT and found Dr. Stephen Scionti, who does HIFU (High Intensity Focused Ultrasound) and he did the procedure on my husband in Puerto Vallarta 3 years ago.  All went great, the dr. only ablated 75% of his prostate using MRI guided biopsy results to pinpoint the cancerous areas and spare the rest.  Full recovery, no issues with incontinence or ED.  Now 3 years post HIFU, dr says he should have another MRI, then he did biopsy after reading the MRI as he saw some darker areas.  Turns out he had 1 core out of 8 which had some cancer, Gleason score 6 in less than 5% of the core.  Dr suggesting another HIFU, not much data out there on this. Seeing another urologist soon for another opinion, may want to wait and monitor.  Thought this info might be helpful to you.  Good luck and contact Dr. Scionti, very knowledgeable and professional.  

RE: Happy 50th B-Day, you have Cancer !!

by peanutdrd on Thu Nov 19, 2015 03:39 AM

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*CANCER UPDATE* Urologist appointment, mixed results. No metastasis, but cancer involves almost all the prostate and removal would not have good results (clean margins would damage surrounding tissues like bladder, colon, etc). Doctors referring me to Radiation Oncologist to nuke the cancer away. Appointment this Friday.

RE: Happy 50th B-Day, you have Cancer !!

by peanutdrd on Thu Nov 26, 2015 12:16 AM

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Starting IMRT treatment on Monday November 30th. Surgery is not an option.
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