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PROSTATE CANCER SUPPORT SITE

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Steve Mac and Kate live in California, USA. He was 57 when he was diagnosed on June 4, 2009. His initial PSA was 4.2 ng/ml, his Gleason Score was 3+3=6 and he was staged T1c. He is undecided as to his choice of treatment. Here is his story.

Three months ago my primary care physician told me he wasn't happy with my "rapidly" rising PSA (PSA velocity) and referred me to a urologist. At this point I have had exactly zero symptoms and no family history so I couldn't have cancer, could I?

The PSA was repeated and a free PSA done. The results were 4.2 and 14%. On we went to the biopsy May 25th. I was rather nervous about the procedure, after all who wants a device placed in their nether region and then pierced with a needle twelve times?!

After being briefed by the assistant I began preparing for the torture when I turned and saw the ultrasound probe and a needle attached to it that looked like a whale harpoon! I quickly turned away , took a few deep breaths and told my feet and legs not to run. As it turns out it wasn't that bad. I did feel like I had been kicked in the crotch the rest of the day but with some Tylenol it was tolerable. The next day I was fine. I had blood in the first BM and urination and still in ejaculate. I wouldn't want to repeat the experience but it wasn't horrible.

We got the results June 4th- PCa in two of the samples with a 3+3 Gleason. We were shocked and shaken to our cores.

The Doc recommended that we do some research before meeting with him on the 19th and recommended Prostate Cancer for Dummies. My first thought was, "You've got to be kidding me! Guess they have those books on everything". Well by now my wife Kate and I have read that and also a publication from Johns Hopkins Hospital, in addition to a lot of web research.

Of course we aren't going into this without a second opinion and have secured an appointment on the 24th with Dr. Alan Partin, the head of Urology at Johns Hopkins. He is the researcher who developed the Partin Tables for PCa staging. We feel the Lord has guided us to such a renowned physician.

So we think the first stage of this journey is well in hand and are continuing our research, formulating our questions for the docs and waiting for the appointments.**1 Of course the waiting won't be all that easy!!

Many thanks to all of you who have contributed to this site and especially to the Webmaster!! God Bless

 

UPDATED

July 2009

 

After getting three opinions we have decided on RRP surgery at Johns Hopkins Hospital on Aug 12th. With a little help from the Lord all will go well and those renegade cells will be forever gone.

 

UPDATED

August 2009

 

The month between making the decision for surgery and the actual event was very difficult. I imagined having made the wrong decision, the cancer cells rampaging through my body, and anything and everything that could go wrong with the surgery.

Finally the time arrived for our departure and we flew from the U.S. west coast to Johns Hopkins Hospital on the east coast. The two days before surgery passed quickly with all the activity, and before I knew it I was on the operating table. Then the next thing I knew it was done and I was on my way to my hospital room. The next two days are mostly a drug induced fog. Probably for the better!

48 hours post surgery we were on the plane heading back west. That trip of over 12 hours was rather difficult and I wouldn't recommend anyone repeat it. The combination of the staples in the incision, the catheter and collection bag and the peritoneal pain made sitting very difficult. My surgeon, Dr. Alan Partin, had told us that he was confident that he had gotten all the cancer. That was confirmed a week later when he called with the pathology results, "The findings are as good as it gets!". Organ confined, clear margins and clear lymph nodes. Praise the Lord for answering our prayers!! I can highly recommend JHH and Dr. Partin. The experience was as good as it could be with the patient, friendly and professional staff.

I have been walking (more like shuffling) 15 minutes at a time 3-4 times a day with a lot of rest in between.

Each day post surgery I have felt better. I must credit the love and care of my wife, son and daughter-in-law with aiding my recovery. Without their support I would not be as well as I am today.

Yesterday I had the staples removed and today took out the catheter. A couple milestones I have been looking forward to. The peritoneal pain and sensitivity is still with me and rather aggravating as it makes it difficult to sit in any one position for too long. I have found that a surgical donut (looks like a small tire inner tube, if you remember those) helps in some situations.

I guess the next challenge is to regain continence and just let nature finish the healing. I am not normally a very patient person and I think this is going to be a challenge.

 

UPDATED

October 2009

 

 

Two months post-surgery and I am told I am doing well though at times I don't feel like it. I made almost daily improvement for the first six weeks. That has slowed down and now I have little change on a weekly basis. Patience Steve, patience.

I struggled with the peritoneal pain and finally called my doc who told me to get rid of the donut and be patient. It gradually improved and is almost entirely gone now, though sitting for over a couple hours at a time is uncomfortable.

One of my reasons for posting here was to provide information I didn't receive after diagnosis, so here goes.

I have been totally dry at night for about three weeks now, with minor daytime leakage especially with exertion such as standing or lifting. I use half of an Always pad about four a day. Initially I was greatly annoyed at the wet feeling and tried using baby powder which did help. However I discovered that it was causing a bad odor so I discontinued it. One secret I was given about two weeks post op was to delay urination for at three to four hours to control my bladder and not let it control me. Great results after only a couple of days. I must say it is nice to have a strong stream and void completely without the previous stop and go action.

My doc has me on 5 mg (1/4 tab a day) of Levitra. I now know why the drug manufacturers can afford all those prime time TV ads. $20 a pill!!!!! One thing I was never informed of was penile shortening. It was a shock to find out I was less than two inches! The doc also has me using a vacuum erection device twice a day which is somewhat of an ordeal but hopefully worth it in the end. In the meantime I am pretty much back to my pre-op length. No erectile success yet and with the leakage I can't bring myself to really try and engage in sexual activity and put my wife through the mess.

Probably the thing that is really irritating me now is tenderness at the incision site especially at my beltline.

As a firefighter we have a cancer presumptive law here in California, so I am pursuing that claim through worker's compensation.

Steve's e-mail address is: divchief07@comcast.net

Note 1: There is a list of questions which may help to formulate the information required to make a good decision.[back]