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PROSTATE CANCER SUPPORT SITE

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Haresh K and Cindy live in Oviedo,Florida, USA. He was 55 when he was diagnosed on May 19, 2009. His initial PSA was 8.0 ng/ml, his Gleason Score was 6 and he was staged T1c. His choice of treatment was Da Vinci Surgery . Here is his story.

With no family history of the disease, it was a complete surprise to receive the diagnosis of, "Moderately Aggressive Prostate Cancer" (Gleason 6, Staging T1c) on May 19, 2009. Welcome to my journey......

June 10, 2009

Clinically Speaking:

March 13, 2009: PSA 14.1 in routine exam with family physician, Dr. Pinkal Patel, resulting a referral to Urologist, Dr. Rakesh Patel (no relation).

April 22, 2009: PSA 10 resulting a scheduled Transrectal Ultrasound & Biopsy.

May 5, 2009: Biopsy, 12 tissue samples, 6 left side & 6 right. Pathology results discussed May 19, 2009: left side Mild Chronic Prostatitis, right side Moderately Differentiated Adenocarcinoma involving 6 of 6 samples and 70% submitted tissue volume. Gleason score 3+3=6 . Perineural Invasion Present.

Dr. Patel recommended Radical Prostatectomy (taking whole prostate and a lymph node on right side) within 4 weeks but no later than 8 weeks, specifically Da Vinci Robotic Prostatectomy.

Dr. Patel suggested researching the Da Vinci further, along with External Beam Radiation and Seeds. After doing so, I came to the conclusion, the Da Vinci is my best chance to nip it in the bud. Further, Dr. Rakesh Patel of Winter Park Urology in Orlando is a very caring, straight to the point, knowledgeable and experienced Urologist who has done 500 plus Da Vinci Robotic Prostatectomies. He lays it out simple terms and gives plenty of resources for information and support and his staff is great, all which have been invaluable thus far. I chose this procedure because it's less invasive, with faster recovery and return of functions.

I have been researching the cost of this procedure (I have no insurance) WOW!!! Florida Hospital in Orlando is not showing much mercy at this point and they want cash up-front. WHAT A RUDE AWAKENING! Once I have arranged funds for this procedure I will schedule my surgery date. I will keep you posted.

Later: June 19, 2009 Note: Because our family Doctor, Pinkal Patel and our Urologist/Surgeon Dr. Rakesh Patel just happen share the same last name, from here on they'll be referred to as Dr. Pinkal and Dr. Rakesh, respectively.

How did I get here?

In February 2007, with a PSA of 3.5 and a Testosterone level in the low 200's resulting in a than adequate libido, my (previous) family doctor put me on Testosterone and Dr. Wilson's Super Adrenal Supplements (which I ordered on-line.) First she prescribed testosterone via a compounding pharmacy in a topical Androgel Cream and when that didn't do anything, by that fall changed me to Injections, which my wife gave me at home every other week. By spring 2008, my Testosterone was in the 800 range and by summer, in the 1100's. Call me SUPERMAN!!!! My sexual performance and satisfaction went through the roof and my wife went around purring like a kitten. Sounds great, a true happy ending, right? Not so. Come to find out from Dr. Rakesh this spring, with the fact I've likely had this cancer in my body for up to 10 years, the Testosterone and supplements could very well have fueled the fire with the cancer and sparked a far more aggressive growth pattern. What probably should have happened is a referral to a Urologist with the PSA at 3.5 before any further talk of Testosterone prescriptions, especially at my age, then 53.

To back up a bit, I've never been much of an exerciser and being in my own business which included regular travel, I'd eaten my share of take-out and fried/spicy foods-often to excess (the good tasting stuff.) However, I didn't drink, with exception of the celebratory bottle of wine shared with my wife on special occasions and I stopped smoking at age 23-24 when I first met Cindy.

Doctor-wise, having moved to Oviedo/Orlando from South Florida in 2006, (our son a senior in high school, with intent to go to UCF), we found a female family physician via a recommendation from the Dr. our son was job shadowing for his senior project. When we first saw her, she said her specialty was OB-GYN and females, but in her relatively new family practice, now had many male patients. If I'd been in my right-mind, I'd have run the other way as fast as I could. Compound that sentiment with the fact that she was asking advice from the compound pharmacist on the testosterone effects and dosing. Why I didn't heed my inner voice's advice to change doctors will always be a mystery and a personal disappointment for me.

Finally Cindy and I each lost 60-lbs. weight loss and got on a vigorous exercise regimen, and the doctor having real trouble regulating my blood pressure with various meds, I gave up. We met Dr. Rakesh in a first visit when our son went in for a routine matter and he recommended Dr. Pinkal to us for a family doctor. Dr. Pinkal would only see me if I agreed to a complete physical and blood work. I agreed and when my test results revealed by PSA at 14, immediately referred me back to Dr. Rakesh. The rest is history....

What gets me is,

(1) with as common sensical as I am, why I went along with treatment with a professional against my better judgement and

(2) with as medically advanced as we are in this country/world, why we don't educate our doctors better on an on-going basis and

(3) why we don't yet know what causes cancer-for sure!?????!!!!

That's it for now, I'll keep you updated......Happy Fathers Day to all!!

 

UPDATED

August 2009

 

 

August 18, 2009 As you may have guessed, the time lag between updates has involved treatment for my Prostate Cancer. Before we explore the process (in more detail) from my perspective, I want to share an opinion with any and all prospective DaVinci Robotic Prostatectomy candidates in search of a qualified surgeon.

My Urologist and Surgeon, Dr. Rakesh Patel of Winter Park Urology Associates here in Orlando, is a renowned pioneer in this procedure and is so accomplished with his skill and expertise, that (to my understanding) he's done well over 700 of them. He continues to perform them regularly with great results and is considered among the absolute best in the field. There are only a couple of doctors with high reputations in Central Florida and we made our decision to go with Dr. Rakesh Patel for some very sound reasons and we have absolutely no regrets whatsoever.

From the beginning when my PSA was so high that we had to consider the Trans-rectal Biopsy, through the big "C" diagnosis, then on to providing resources and the easiest ways to learn about and understand all available treatment options, Dr. Patel has been so thorough, so knowledgeable and so caring, I've felt like I was his only patient.

Once my wife and I decided on the DaVinci for treatment, he took special care and time to prepare us, to include hand drawing us a complete diagram of the anatomy and the surgery method in layman's terms. We were made well aware of the risks and possible complications along with the benefits and a realistic time-line of full function return. He answered our questions before they were asked. We were so impressed and had become so empowered with knowledge, my wife and I were more than comfortable that we'd made the right decision. As a result, our fear and trepidations were gone, we were ready, no doubts.

The procedure was to be on a Monday morning and Dr. Patel called us at home on Sunday to see if we had any questions or concerns about the surgery and to personally reassure me, I'd be just fine. He said that in two or three days, I'd be looking back and asking what all the fuss was about. Turns out he was exactly right, but for me, someone who's never had surgery or broken a bone in his life, that meant an awful lot to me at the time.

Bright and early the next morning after checking in at the hospital, one of the first smiling faces we saw was that of Dr. Patel. With a calm and simple run-down of what the day would look like for us, he lightened our mood and left us reassured, to go and perform a DaVinci Prostatectomy on another one of his patients who'd been admitted before us. This particular surgery, along with so many others is what Dr. Patel does day in and day out and truly seems to love his work.

After the procedure, Dr. Patel went to the waiting room and personally talked with my wife, letting her know, among many things, that he was able to spare my (all important) nerve bundles. She was confident all had gone well and breathed a big sigh of relief.

The post-operative follow-up care we've received from Dr. Patel and his staff has been second to none. When the Doctor personally called us and gave us the good news that my surgical margins were negative and there was no sign of glandular (or other) metastasis, he was genuinely happy for us. This hit home.

The proof's in the pudding. In only four short weeks, I've regained my continence by 99% and my erectile function is very promising already. Bottom line, we would highly recommend Dr. Rakesh Patel to anyone.

I am scheduled for my first PSA on August 28th and will update with info. on my results. More detail will be forthcoming, but feel free to contact me if you need any information about my experience.

 

UPDATED

September 2009

 

 

September 11, 2009

August 21, 2009: I had blood drawn for my first PSA test post-op. Although it'd only been 5 weeks since the surgery and I'd understood the standard was done at 8 weeks, it seems the test was ordered as a matter of extra caution presumably. Although the surgical margins were clear, the pathology report on the extracted prostate showed my Gleason rating was a lot closer to an 8 versus a 6 after all.

August 28, 2009: Dr. Patel gave us the news in his office that my PSA was now 0.10, when we were hoping for 0.0. As he explained, this could be due to one of three main possibilities:

1) when the prostate is removed, often the PSA leaks out and makes it's way into the blood. If you'd gone in with a PSA of 8, it could go up to 20 or even 30 or more and that it has a half-life reduction weekly thereafter. (e.g.: at 30, after week 1 post-op the PSA would be 15, week 2-PSA 7.5 and so on.)With my test being taken at only 5 weeks, some 'surgical' PSA may still have remained.

2) when the prostate is removed, the tissue just above and below the incision may contain benign prostate tissue, which could register a PSA.

3) even with negative surgical margins, some cancerous cells may have remained behind and if so, a strong dose of radiation to the pelvis may be in order to kill them off.
Apparently, it's possible, although very rare, that enough of the active cancer cells remain and more aggressive treatment will be necessary.

Dr. Patel ordered another PSA in 2-3 weeks to see where we are and we'll go from there.

He was pleased with my healing progress even commented my continence and erectile functions were 'early' compared to the norm. He prescribed Cialis (2 doses per week) and said it's to begin to get the blood flowing into right areas on a regular basis for rehab. of complete erectile function.

I'll get back with the next PSA result.

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FYI, the whole surgical experience was not as scary as I was led to believe.

I had to stop certain meds and supplements 10-days before and had the pre-op tests I needed within 7 days of surgery In my case I needed blood work (CBC & CMB & PSA) along with an EKG. They were all painless and came out fine, but because I had them done at my ,Dr. Pinkal Patel's office versus the hospital (for cost reasons, and he was very kind to me.) I inherited the task of making sure both the surgeon and hospital got the results well before the surgery.

We made our enormous pre-payment to the hospital five days pre-op. and sat down to go over my medical history and instructions with a nurse there, to include a living will.

24 hours pre-op I stopped solid foods for liquids and drank two bottles of magnesium citrate to clear our my digestive track and took it easy. The prep was no big deal.

On the day of, they sedated me even before going to the OR, and everyone was calm and explained things very clearly. I only remember seeing the Da Vinci machine and a few people and ceiling lights in the OR and then being awakened by a nurse in the recovery room. I guess while I slept I was moved to my room and saw my family soon after. Toward the evening as the main drugs started to wear off I felt some pain/trauma-like discomfort and was given a pain killer. I discovered the catheter with it's intra-penile line had been installed, but didn't hurt; I was extra protective of any movement or handling though.

I was walking the ward soon after, had fairly good nap between midnight and 4 am, and lots of visits for vital checks and dressing changes, blood work and the like but nothing invasive. By doctor's orders of course, but I would recommend asking for (sugarless) jello, applesauce and juice, (skip the coffee) when they bring you your first two meals, so you don't upchuck like I did. It's like trying to belly laugh, and after surgery, it's an experience one can do without.

I got out the following morning and took home some prescriptions and a post-op kit for wound care and the catheter and went home to sleep. The nurses had taught us how to use the catheter and everything, again no big deal.

I just walked a lot, sat on a soft pillow and took about 10 days to rest at home in loose boxers and comfy t-shirt, slowly working back into a regular diet and then got the catheter out. Hallelujah!!!! I used depends with snug briefs and just took things easy until my first PSA, the rest you know.

The hype and self-induced stress is the worst part of it all. I decided to trust in my caregivers as I did my Doctor and take a 'chill-pill' (as my son would call it) and let things happen as they were designed to. I'd take a proactive approach to my recovery and had my family to love and support me. That's all that it took and I'm doing great.

If you want any more information, feel free to e-mail me. Until next time, take care all.

Haresh's e-mail address is: hmohan53@gmail.com