YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

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Chris O'Dell and Sue live in Colorado, USA. He was 52 when he was diagnosed on November 19, 2007. His initial PSA was 3.1 ng/ml, his Gleason Score was 3+4=7 and although he does not state what his staging was it would seem that he would have been staged T1c. His choice of treatment was Surgery. Here is his story.

I just recently got the devastating news. My regular physician felt something on my prostate at my regular exam in September. This turned out to be benign prostate stones which clearly showed up on my later ultrasound. But my PSA had risen from 1.9 to 3.1 in the last 15 months, so I was sent for a biopsy.

The biopsy doctor was pleased to find the prostate stones and felt good after the biopsy.

Unfortunately, one week later, my urologist called with the news that I had prostate cancer. It was a 3+4=7 diagnosis with cancer found in 4 of the 10 sticks with 3 of the 5 sticks involved in the right lobe. Only one tiny find in one stick in the left side. We met with the doctor two days later.

At age 52, there really wasn't any sensible choice as far as I was concerned except radical prostatectomy. We saw three doctors who did the open incision and one who did the robotic. In looking at staging, they gave me everywhere from T1c to T2b. The only doctor who felt and saw my prostate (the one who did the biopsy) rated it T1c.**

I have a very small prostate (20 grams) but all doctors felt this made no difference on potential for cure or ease or difficulty of surgery.

After having seen Dr. Chan at Johns-Hopkins we immediately knew he was the right person and Johns Hopkins was the right place to go. We decided on open incision. After having read lots, there is just no date on long-term outcomes with the robot. Further, there is no evidence that the robot can give you better negative margins and there is some evidence that negative margins in similar patients are not as good with robotic, though it is difficult to compare apples to apples and this result is hotly contested by robotic surgeons. There is evidence that the robotic procedure has better recovery times, but no better outcomes for side-effects long term. Being young and very healthy, I opted for the proven method over the robotic.

Dr. Chan has performed well over 200 such surgeries, performs two per week and performs them at the finest rated prostate cancer center in the world, including the ability to consult with Dr. Walsh who invented the nerve-sparing technique and Dr. Partin who created the Partin Table.

There just wasn't any choice for us.

Dr. Chan ordered my pathology reviewed by Hopkins pathologists and we are awaiting the results of this. He also ordered a pre-surgery bone scan (though this is not recommended for persons of my age and numbers by the Urologists Association). I will have the bone scan on December 31, 2007 with results in a day or two.

My surgery is scheduled for January 14, 2008.

I have donated my own blood. Hopkins requires only one unit as opposed to the two that most hospitals want (I took this as an encouraging sign). If your health plan won't cover (which mine won't as I am going out of plan for the surgery) be prepared for the high cost of this $750 in Colorado.

The day I received the diagnosis was complete melt down for my wife and I. We both "cried our eyes out" there was nothing left to cry.

After that, we were on to organizing the problem and getting it done. Now we are in sort of a lull period which leads to down times and anxiousness.

Actually one of the most bothersome things right now is having to repeat all of this to friends and acquaintances. But, I have discovered being a workaholic and letting people know that I am just not up to talking about it has helped. Most people are understanding and willing to accept this.

One final note, I found that once you have been diagnosed with cancer, all of the sudden, you start to get a lot of presents at Christmas time. Guess there is one advantage.

I will update with results from pathology and bone scan and then later just before and as soon after surgery as possible.

If you are going through the same thing, feel free to contact me.

 

UPDATED

February 2008

 

 

Had surgery on January 14, 2008 at Johns Hopkins, Dr. Chan. RRP with standard abdominal incision. New surgery floor that does nothing but prostetectomies. Recovery floor called "camp prostate" with nothing but post prostetectomy patients.

Surgery went well. When awakened in OR, was really looped and my tounge was very loose. Anesthetologist states that I now have the record for dropping the "f-bomb" in the OR. Kinda of funny, really embarassing, especially in front of doctors who had just finished cutting me open.

Surgery Monday at 10 am. Home to in-laws on Wednesday at 11 am. Care outstanding. Hospital, doctors, nurses always early. I was taken for surgery 1 hour early and for cath removal at 7:45 am for an 8:am appointment. Care was outstanding!! Hospital costs unbelievably reasonable, expecially since I am paying 30%. Contact me if you want to know more.

Got pathology on Thursday of surgery week(again earlier than I was told). All negative margins (this means the cancer was organ contained). No cancer in the lymph nodes. (Hopkins as a matter of course removes the lymph nodes, something a lot of folks don't do).

Spent 2 weeks as in-laws home outside Baltimore. I recommend it. They were very helpful to me and my wife and being away from home meant that I didn't have a stream of visitors. I got to sleep which I needed.

I was also able to do some computer and phone buisness, but not too much. Slept til 9 am most days and went to bed a 10 pm. Naps of 2-3 hours each day.

Pain was well controlled. Nothing but Tyelenol taken after Friday of the first week. Worst pain was gas pains. Second worst was getting up out of a chair or out of bed the first few days. You never know how much abs that takes until after the open surgery.

The catheter is a pain. Hopkins insists on two weeks with it to allow the connection to the bladder to heal. In spite of the bothersome nature I think that is the right decision. The worst is showering. It took me 20 minutes to get the incision and catheter covered before.

Catheter came out successfully. You will need some protection. Hopkins gives out "Sir Dignity" underwear. It is great, much better than the Depends and such. You can order this underwear on line. $15 per pair and order up one size as they do shrink. They are regular tighty-whities with a waterproof pouch sewn in the front where you use ladies pads. Start with the thick pads and move down as you do better.

No matter what you wear it will be uncomfortable. It will make you sweaty down there and will scrunch up your testicles when you are wanting them to swing free. The feeling of dampness is ugly and of course shrivels your penis to a very small size which for your piece of mind isn't the best. After a few days, I was able to take 3-4 hours off in the evening where if I had an accident it was no big deal. At least it got some air down there and made me feel better. Last night I was able, 5 weeks post surgery to wear no pads at night, had a large pad for the bed, just in case. No leakage last night. Still wearing a medium pad during the day, but only one. So I am doing well in this category.

As for sex. Well someone told me today that at least I have the two years as a living being to try to get over this. There are signs of movement down there. Some engorging, but can't get to erection. Never thought I'd be glad to have a prescription for Viagara, but I am and can start it at 6 weeks post op, next Monday. It ain't cheap. I'm not allowed to try anything with my wife until next Monday anyway. Have tried by myself. No real luck, though I can tell you from experience, you can have a crashing orgasm, even if you aren't erect. I didn't believe it either, but it is true, believe me.

All for now guys. Contact me if you need help. I update at 3 months when PSA test comes back or before if there is any "movement" on the ED part.

Stay well and know that Prostate Cancer can be "cured." I'm the living, recent proof of it.

Chris' e-mail address is: chrisodellden@comcast.net

**FOOTNOTE: IT SEEMS THAT THERE MIGHT BE SOME CONFUSION BETWEEN CLINICAL STAGING, WHICH WOULD HAVE BEEN T1c AND PATHOLOGICAL STAGING WHICH WOULD HAVE BEEN T2b - SEE STAGING FOR DETAILS.