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Recently diagnosed with Gleason score of 9

SV
Posts: 56
Joined: Sep 2010

My biopsy last week revealed a few fives and sixes but the ugliest was a score of 9. The strange thing though is my PSA score of 5 about six months ago. Because of the high Gleason score, my urologist suggested the DaVinci surgery and a second opinion. After numerous recommendations and a consultation with Dr. Kawachi at City of Hope we agreed to his soonest surgery date of October 28 2010. When asking him about diets and so forth, along with the suggestions of garlic, tofu, cooked tomatoes, yogurt and so forth, the seemed to emphasize staying slim and active.

I am 58 year old recently retired competing athlete so I am in great physical shape and well aware of the powers of positive thought. Something else interesting is Dr Kawachi pointing to my girlfriend and saying that she is my best weapon. There is no disagreement there as she has not flinched for one second when it came to standing by my side to beat this disease. She also subscribes to the notion, if you can believe it, you can achieve it.

So far, I only know of the horror stories posted on the internet regarding the outcome of Gleason 9 cases and how there is not much to look forward to after surgery. It is my belief that in due time, I will return to a fully functioning man only minus semen. Is there any positive stories out there to support this possibility?

bdhilton
Posts: 756
Joined: Jan 2010

Yes I understand and totally believe in “With the faith of a mustard seed...” from past life experiences… I first saw my mother do this over 26 years ago with multiple myeloma (she is still with us at 85 and is beyond active)…Diet and positive thinking has keep this at bay with no treatments (yes she sees a oncologist 2 times a year)…I am a big believer in believing…

Peace to all

hopeful and opt...
Posts: 1293
Joined: Apr 2009

Many times we recommend that there be a second opinion by an expert of the pathology that is taken, since it is complicated to determine a gleason score........I wonder, did you have a second opinion of the pathology from your biopsy?

Thank you for posting your story of hope and positive thinking

SV
Posts: 56
Joined: Sep 2010

Although I am not certain if City of Hope reevaluated my original G9 score from Bostwick and concurred, but Bostwick is a well known lab specializing in prostate cancer, and them being far off the mark is highly unlikely. Even when biopsies are double-checked by another lab, I have never heard of one being more than one Gleason grade off and that is always upward! Mine went down two points, so think about that.

Equally astounded because my pre-op prophesy came true, my surgeon, Dr. Kawachi, did not know what to say nor could he offer an explanation. But I can. Faith and the power of positive thought combined with actively attempting to control the beast with proper diet and life style changes. (One tool does not work without the others.)

When reviewing this site and others, I am stunned to hear the complaints of guys with prostate cancer pissing and moaning about giving up their ice cream and cigarettes--most who have not even done it yet! It is these men who have all the doubts about how I beat my disease. Once diagnosed, if you are not immediately researching 24/7, your chances for survival will surely just be based on what is typical according to statistics. The choice is ours, stand up and fight or lay down and die.

hopeful and opt...
Posts: 1293
Joined: Apr 2009

...that's what we are.............(by the way, I beleive that the former sec of state under Bush, came up with the phase(I forget his name now))

Bostwick, as I understand is an excellent lab..........but , people make mistakes.

Your right, people moan and groan about life changes, and quite often do not make them...I'm glad that you are making these life changes, which are heart healthy...we are more likely to die from heart disease rather than prostate disease.

By the way, how many surgeries has Dr. Kawachi done now. He and his patner Wilson have a very good rep...........Also what was your opinion of the hospital support staff?

bdhilton
Posts: 756
Joined: Jan 2010

Big believer in diet and exercise…they are the only two things you control with this beast-peace

hopeful and opt...
Posts: 1293
Joined: Apr 2009

heart disease, by far the number one killer of men; diabetics, colon cancer, etc, etc. Also quality of living is lot better among those exercise and eat right than among those who do not.....Like you, I have been eating right and exercising most of my life.

bdhilton
Posts: 756
Joined: Jan 2010

One thing for sure is that we are all in a lottery-the ultimate game of chance, and someday our luck will run out. Everybody dies. There's nothing we can do about it...so in the mean time live well and enjoy...

SV
Posts: 56
Joined: Sep 2010

"By the way, how many surgeries has Dr. Kawachi done now. He and his partner Wilson have a very good rep...........Also what was your opinion of the hospital support staff?"

After being recommended by so many other California urologists and asking a staff member that question, I was only told that Dr. Kawachi has done thousands. From what I hear, Dr. Wilson is a good surgeon also.

City of Hope was indeed a pioneer in robotic surgery, even ahead of Mayo on that, but as I was warned, the follow up is not so good. Because Dr. Kawachi is in such demand, he is doing three surgeries per day, several days a week. This means another doctor does his pre-op and post-op, while he does meet clients for initial consultations. But I knew that going in and that is fine with me because as long as I had the best surgeon, I could handle the rest of what amounts to hand-holding.

I also discovered years ago, that specialists only know their field. When asking a knee once surgeon, "What about rehab?" He indicated that he had no clue because his job was only knee surgery. He was also the best man at that time for surgical repairs but I doubt he could fix a broken arm. And that is what I wanted for yanking out my prostate...someone who lives and breathes nothing but prostate removal 24/7. This is why so many surgeons know zero about diet and nutrition, it is simply not their field of study. They only believe in published double-blind studies and so forth.

The power of positive thought is like magnetism and gravity, we know it exists, but no scientist can explain it. For me, I target everything I do and state exactly what I intend to accomplish. That is step one, to be followed by action. I spoke firmly to medical staff that they would discover in my post biopsy report, a lowered Gleason score. I stated that I would be continent when the catheter came out. And the biggest relief was last night when I stated that at twelve days past surgery, I would have successful intercourse (Vitamin V assisted) with my woman. This is after riding my motorcycle the day after catheter removal, a day at the gym (ever so lightly) and yesterday, thirty minutes on the elliptical machine. I decided several decades ago that to be successful in life, I must do everything that I state I will do-- goals large or small.

Sometimes we just gotta bite the bullet...and DO IT!

SV
Posts: 56
Joined: Sep 2010

Since I will be having another urologist closer to my home do my followup, I picked up my own 6 week PSA test results today. My score was <0.1 using Siemens Advia Centaur Chemiluminescent method. (There was also a tiny number one written up to the right of the number one) Is this good news or bad news?

For a little over a month now I have been working out every day and having nightly intercourse with a 3/4, Viagra-assisted, erection. Maybe once a day if I swing a leg around too quick I dribble a few drops but other than that, I am fully continent. Down at the dojo last week I tested myself for wrestling to see if I could hold a two hundred pound man with his weighted knee in my belly. This went well until I asked him to bounce, causing a slight leakage with some lower abdominal pain. I am not positive but I suspect that I might also leak a few drops during intercourse or while climaxing. Is this normal?

SV
Posts: 56
Joined: Sep 2010

After reading conflicting opinions about Gleason scores, until today I was not sure what the difference was between <0.1 and <0.01. My new followup urologist confirmed that they both mean the same...as in none detectable. Whew!

I have discovered though that riding a motorcycle causes me to leak a few drops when getting on and off and sometimes when standing up or sitting down. This did not occur until I started riding for more than an hour at a time so it is a step backwards. Looks like I will have to customize the seat by hollowing out a section to relieve the pressure where my prostate used to be and is now irritating my sphincter.

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

Hi SV
I read your story along this thread and I do congratulate you. It was a great fight against all odds of treatments and against the negative opinions by some posting here. Your attitude conquered the souls of many here, and it will be inspiring for many new comers.

These symptoms you are experiencing are quite normal after the surgery particularly if you are so active in your lovely nights. It is natural for us RP survivors of ejaculating urine when at the arousing timing. Nerves transmitting the sensation will find a different path to get to the objective and with the lack of the previous ones the nerves controlling the sphincter are used as substitutes, giving that explosion sensation. Hopefully they do not get inflamed and become obstructive when peeing. (I experienced that)

Your PSA results within the brackets 0.1 and 0.01 are normal. Remission is considered in values lower than 0.05. The new third generation ultrasensitive PSA tests give still more accuracy with three decimal places (0.XXX ng/ml), showing still an earlier timing of any progress in the treatment, but you do not need it.

I wish you the best in your journey.
VGama

SV
Posts: 56
Joined: Sep 2010

correction

Ken H
Posts: 1
Joined: Dec 2010

SV,

I am a 57 year old male and was diagnosed last August. My PSA went from 2.3 to 9.7 in 13 months. Biopsy was a gleason 9 with 11 of 12 samples containing cancer. Pre-surgery bone scan and MRI did not indicate any spread of the cancer. I had surgery (DiVinci) on 7 Oct and all lymph nodes were clear of cancer. My 8 week PSA was none detectable (<0.05). Other than a second hospitialization for a staph infection my recovery has gone pretty smooth. I am back in the gym and increasing my strength and endurance every day. I plan to see an Oncologist after the first of the year to discuss additional treatment options. I'll post additional information when available.

Hope your doing well. Ken H

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

Hi Ken H
Welcome to the board. Thanks for sharing your experience. I cannot understand your comment regarding your plan to discuss “additional treatment options” with your oncologist. Your status is just fine and hopefully it will hold for a long time.
Do not be anxious, enjoy the season and have a good New Year.

VGama

SV
Posts: 56
Joined: Sep 2010

x

SV
Posts: 56
Joined: Sep 2010

Glad to hear that you are doing well amigo. I too, am back in the gym with full strength recovery, that is, I am as strong again as I was the day before surgery 10/19.

I leak one or two drops when lifting maximum loads and sometimes when climbing off of my motorcycle. We have cut out a 2" strip of the foam seat padding to relieve pressure where my prostate used to be but now likely is where my sphincter is located. Something in that area compressed uncomfortably but now it is less so.

I am still using vitamin V but graduated from 3/4 erections to full on towel rack able to cut diamonds. Trouble is that it fades slightly after beginning intercourse but less and less every night. Sex and orgasms in general seem to improve and grow longer with practicing Kegels.

And two weeks ago I had surgery to laser a 15mm uric acid kidney stone. There was some complication so the doc only blasted about a third of it. We are now trying to dissolve the rest by neutralizing my pH with Uricet.

Best of all, the positive attitude and rock solid belief system combined with a full on organic diet free of sugar and dairy makes me feel like a million bucks. Even when I eventually die I'll have a smile on my face.
Happy New Year my brothers

SV
Posts: 56
Joined: Sep 2010

Hi guys. I just received results from my third PSA test and it continues to be a <0.1. Although my sex life is nearly returned to normal, about three months ago I experienced a regression in erection firmness. That temporary mysterious step backwards has ended along with nearly zero dribbling, even when lifting free weights and motorcycle riding for long periods.

To be safe, we've also remained on a healthy diet of fresh organic vegetables, organic chicken and wild caught cold-water fish. We're still zero sugar but do use very small doses of honey or agave on our organic oatmeal. Dairy is mostly off the table too except once in awhile on a cheese pizza.

With all of the pros and cons about Pom juice, just for the heck of it I take a few swigs a day along with lots of fresh organic berries and two aspirin. If I had to guess, I'd bet that I'll be on vitamin V for life but at age 59 that is not so unusual, with or without prostate problems.

And most of all, I want to thank all of you who contribute such valuable information and encouragement to all of my fellow cancer warriors. The debate will likely go on about the best treatments and so forth, just remember that after you've adequately researched all options that relate to your case, believe, believe, believe. It's the power of positive thought that will always give us the vital edge that can save our lives.

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

SV
Glad to read about your continuous “remission”. It wouldn’t surprise me if you report improvements in your other health indicators too. Continue those cautionary actions trough diet and physical fitness and you are back-to-the-begining.

Wishing to read more of those <0.1 in your posts.

VG

SV
Posts: 56
Joined: Sep 2010

I am happy and relieved to report that my sixth 90-day, post-surgery PSA test is still <0.1
Although my sex life has mostly returned to normal thanks to Vitamin V, when lifting heavy items at awkward positions I occasionally continue to squirt a drop or two. As confident and positive as ever, for some odd reason the day of PSA testing, and especially the day after when I go to pick up my results, my stress level rises dramatically. Even after the nurse hands me the results I believe will reveal <0.1, I am so shook up I have to sit down for a few minutes and catch my breath. What's up with that?

hunter49
Posts: 200
Joined: Oct 2011

Great news very happy for you. Keep pulling a zero

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

We all love the Zerrrros.
Congratulations
VG

SV
Posts: 56
Joined: Sep 2010

Although i don't post here much anymore, I still check in occasionally to see what's new. Last November, I completed the required two-years of 90-day PSA tests and since I was still pulling zeros, I graduated to six-month PSA testing--to which are still zeros.Next November when I continue with zeros, my doc says only once-a-year for life.
Here are a few comments regarding what has occurred since surgery.
1. Unfortunately, the love of my life who so graciously helped me through this process, chose to move on a year after surgery. I suppose the strain of the battle ultimately took its toll.
2. I continue to remain very sexually active with the help of a 100mg Viagra. BUT--no Viagra, no sex. This of course, nearly eliminates spontaneous sex but we do get creative.
3. During one out of ten sexual encounters, I squirt a few drops while erection is growing--none during climax though as before. This is embarrassing but I have become skillful at concealing this.
4. In experimenting with and without doing Kegel exercises, for some odd reason, I discovered that doing Kegels had become counter-productive in controlling those erection dribbles.
5. Even with my anatomically-correct motorcycle seat, with the two-inch strip cut out, riding for long periods is something I should not do anymore as it appears to irritate those nerves. More riding equals more dribbling.
6. At sixty-one, I still wrestle in Jiu Jitsu three times a week and do Yoga three times a week--making me feel twenty-one. No dribbling during either workout.
7. My diet consists of almost no red meat, mostly chicken and fish, with lots of organic fresh fruit and vegetables. I do take Vitamin D supplements, DHEA, and Glucosimine for my worn out joints.
8. Every morning, after an 8 ounce green smoothie of spinach, apples and oranges, I practice breathing techniques and mediation. (three smoothies a day.) One recommendation for all is to march on down to Costco and spend $375 on a Vitamix.
9. With heart disease in my family, I get checked regularly and just to keep my cardiologist happy, take the recommended daily dosage of aspirin.
10. I had my testosterone checked last year and it was in the low six-hundred range and then recently, to discover it had dropped to the low fives. Missing the feel-good experience of Testosterone Replacement Therapy, I am tempted to go back on it. Any opinions on this?

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