Russ: A Man of Surprises !!

  Hello to all once again as I have been absent from this forum since last May. I thank Bluebird for her comment under a different post and her suggestion to give an update.   My journey so far has been one of many bumps, bruises and diversions that, like many others probably in this group, have made life most interesting if not the most rewarding. For those who may be new or missed my few posts last year I will attempt here to both recap and give some info from 2005 to date.   April 05 at my annual physical I received news that my PSA tests had progressively increased in the previous 2 years basically over 2 points to 7.1 . This was in contrast to prior readings that I have had taken each year since I was 50. PSAV or velocity had me being sent to a urologist who scheduled a TRUS biopsy, 10 cores that showed 1 core positive. The DRE was negative, T1c with a Gleason 3+4 or 7 with 5% PCa. Now at 58, I saw a different urologist (my first was very new to the hospital and as yet had no operating time) and a radiation oncologist who both recommended that I have a radical retropubic prostatectomy as the best choice of primary.   The most difficult for me to handle was the wait time. I waited to see the urologist, waited again to get the results of the biopsy and waited more to go back to see the urologist and the oncologist. Believe it or not I actually felt better knowing I had the PCa then the way I felt through the waits.   After much time spent on the internet learning as much as I could about PCa and the possible treatments (and side effects), I chose the RRP which was done mid December, 2005. The pathology came back Gleason 3+4, one lobe, 20% PCa total glandular involvement. SV were clear, nodes were X, not removed for checking. The pathologist indicated that I had a possible positive margin (I like the way they protect themselves from possible misdiagnosis. hehe) and staged me as pT3, GS 7, still 3+4. In March 06 I had my first post op PSA that came back 0.87 – they didn’t get it all. I was referred back to the same rad onc and, after another PSA test in May of 1.1, planned for 36 EBRT radiation treatments, total 66Gy, that I received from mid June 06 to the end of July.   In the meantime, it was suggested by my rad onc that I also include a GnRH agonist probably for 18 to 24 months. After checking with my family doctor about the drug, I consented and, after two weeks of Casodex, I had my first Lupron Depot shot, which continues to this day.   More waiting – my rad onc said at least 7 weeks before another PSA.   This result I received in late September 06 – PSA <0.1, Testosterone (T) down from 13 (US measure 394) to 0.4 (US11). My next PSA will be in 2 weeks and I am hopeful that these numbers will continue. J   My next posting to this thread will explain to you why I titled this thread the way I did. It all has to do with my dealings with my radiation oncologist, if you care to read more.   Russ (Rufus)

Yeah, we want to hear more. darn right we do!

Bill

My radiation oncologist always says that I am a ‘man of surprises’. From the first day I returned to him after having the 0.87 PSA test post op, almost every time we met, whether formally in clinic time or in other places, He always seemed to be surprised for one reason or another.   I think he was surprised to see me after my prostatectomy. He was surprised at my sudden PSA increase in such a short time. He said he was surprised when tests I had where he thought something would show didn’t, and also when some tests came back with results that he wasn’t expecting. Some tests that you want to show nothing (like a bone scan for PCa mestatasis) did actually come back as expected – showing nothing. He said he was surprised that an ultrasound I talked him into doing actually came back with a possible liver problem. The contrast CT that came next also came back with the same problem, so he referred me to a liver specialist to look at the results and then have another test, an MRI. It seemed that every time I had some kind of test I got bad news in return. Other ‘surprises’ for him were the body aches I got from the radiation treatments, the lack of   fatigue I really never suffered, the loss of pubic hair that had just grown back from the shave for the RRP, and the gynecomastia I developed from the Lupron. These were surprises, most not desired. The hot flashes and the impotence were expected. After a year and a half of basically bad news at every turn, the report on the liver and my latest PSA test brightened my outlook. Perhaps, just perhaps, I’ve turned the corner.   While most of treatment and testing for PCa, with its positives and negatives, should not necessarily be considered more interesting, it has given me a voracious appetite for any information about the disease. I read a tremendous amount of information from both books and the internet. I have collected over 400 references that I am presently using to write a booklet about prostate cancer from a patient’s viewpoint on the request of my doctor to be used for any newly diagnosed patients. It will also be put on my website when completed. I haven't done any searching about chemotherapy so this treatment for PCa will not be included at this time. All of this is rewarding to me, especially as my knowledge base has grown. In the future I will be doing support work as a volunteer at the local regional cancer center and be available to help anyone who asks. Our local regional center is getting a C$200 million expansion and I will be lobbying to have newer state-of-the-art testing equipment installed, with the trained technicians to go with them. Here's hoping!   Most rewarding for me though is the way my view of life has changed. PCa quickly makes you focus on what REALLY is important in life. I have a wonderful supportive wife of 36 years and we have become closer in the last year and a half then probably during any of the others. I think I cherish each day and look forward to what it brings. I’ve talked more to my son and daughter and we’ve gotten together more often since my diagnosis even though they have been gone from the house for a number of years now. We make time to get together and truly have a great time when we do. Aren’t grandchildren terrific? I’ve got two wonderfuls. Colouring with crayons is more important to me right now than teaching my one class at the university.   I may need to watch my PSA tests carefully, keep my pocket full of Imodium, have a pad or two set aside in case of probable need, Advil for the back pain, and remember to order my blood pressure meds and my Lupron, but isn’t life great?   If you want more info on my treatment program or my tests just ask. Having tests done? I will tell you what to probably expect to happen if I have had it before. (The doctors never seem to find the time to tell their patients about procedures anymore and I was scared to death before having any of mine. I had to know what they were going to do.)   Here's to you in your battle! May each day bring you good news!   Russ (Rufus)    

Russ, you are truly courageous. I look forward to seeing the booklet information. There are many of us here who are facing - or may face - this particular/similar trip through prostate cancer.

Thanks!

Hi ~ Russ, It’s been awhile ~   and we wanted to let you know that our thoughts are with you as you head toward your next PSA!!!   Thank you for staying close.... we see your reply postings to others!!!   We will be right here ~ waiting to hear from you!   Okay   ... In Friendship ~ Lee & Buddy