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Jim R and Carolyn live in Wisconsin, USA. He was 68 when he was diagnosed in June, 2012. His initial PSA was 5.10 ng/ml, his Gleason Score was 7a, and he was staged T2a. His initial treatment choice was External Beam Radiation (Intensity Modulated) and his current treatment choice is None. Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2018 SO THERE IS NO UPDATE.

My story begins like so many others, during a routine annual physical. Since I am 68, my primary doctor has been routinely including a PSA test in my pre-physical lab tests, and these have normally been down around the 2.7 level. But this time, it was 4.7. A DRE (Digital Rectal Examination) has also been part of the normal physical for the last couple of years, but after the exam this time, my doctor told me he had felt a little roughness and that, coupled with the increased PSA level, he was referring me to a Urologist for follow up.

Prior to that visit, I took another PSA to confirm the first, including an assessment of free PSA. That new test put the PSA level at 5.1 (slightly up, probably due to the earlier DRE) with free PSA percentage of 24%. After another DRE by the Urologist, he confirmed my primary doctors concern, and recommended a biopsy. Went in a week later and had the biopsy (12 core) and got the results back the next week - 4 of 6 cores on the right positive for adenocarcinoma, 40% involvement, with a Gleason of 3+4. I requested a second pathology review, and this was done at Mayo Clinic. Results of their review 1 out 6 cores left side positive, 5%, Gleason 3+3, and right side 4 of 6 positive, 40%, Gleason 3+4.

After the pathology confirmation, I have had a couple of visits with my Urologist, who is also a Da Vinci RALP (Robotic Assisted Laparoscopic Prostatectomy) surgeon discussing various options. Although he is a surgeon, he carefully and fully explained all my options while avoiding preaching his own specialty. I then also got a referral to a good radiation oncologist.

I am now in the process of deciding what path is best suited for me, at my age and given my own lifestyle, hopes, plans, and how things will affect my wife as well as me. I think I have narrowed choices down to RALP or IMRT, perhaps leaning slightly towards surgery at this point. After talking extensively with both my Urologist and the Radiation Oncologist, we all feel I have a little time to look at things (couple of months at least). I should mention that my Urologist has extensive experience in RALP, having done more than 400 successful surgeries. He also teaches others how to use the Da Vinci robot so I would feel very comfortable with him as my surgeon if that is the ultimate choice.

I am only really at the beginning of what will ultimately be a long journey and it is good to be able to read and share with others who are, or have been on this journey as well.

UPDATED

September 2012

When I received my diagnosis (after bioposy) of Prostate Cancer, needless to say I was in a bit of a daze. My doctor (a Urologist/Surgeon) did, of course, explain in general terms what my options were and offered a good bit of encouragement that he was pretty sure the cancer was prostate confined at that point and that I did have some time (few months perhaps) to decide what to do. His specialty, of course, is surgery (specifically Robotic Assisted Laproscopic Prostatectomies, of which he has done more than 400). But while I have the utmost confidence in his abilities, I was simply not ready to choose my route at that point. So I began my road of research into Prostate Cancer, prognosis at various stages, and what the various treatments offered, not only in terms of cancer specific survival rates, but what effects on my lifestyle each had or could have. After a couple of consultations with my Urologist, I then consulted with an area Radiation lab, to determine what the state of radiation treatment was at this time. While that answered some questions, there remained many in my mind so I eventually went to the University of Wisconsin Cancer Center to get more information. At the same time, I read everything I could find on "newer" treatments available such as Proton Therapy, Cryotherapy, even HiFu (though it is not generally available in the U.S. yet.

What I found about the newer treatment types is that, while there are many good anecdotal reports of these, there is not yet any good, long term studies available on how they stack up against the more traditional types of treatment. I eventually decided that without such information, I would stay with the more widely studied and know therapies. On these, what I could determine from reading every long term study I could find (including some very recent ones), there seemed to be no significant statistical difference in long term (10 years or more) Prostate Cancer Specific mortality rates between surgery, external beam radiation, and even Brachytherapy, as long as each of them is done by skilled doctors in their speciality. The greatest differences were in both the near and long term side effects possible and chances of these happening, as well as normal surgical risks, and associated effects.

Then began the process of trying to decide which treatment route best worked for me, and fit best within my life. While surgery offered the "quick" removal of the cancer (assuming prostate confined) there were, for me, some issues. As with any surgery, especially for someone like me in their late 60's, there are always some risks such as infections and so forth (although my overall good health is a plus factor). There was also the recovery time. While the surgical risks are small, in the back of my mind were two things. One was a prior surgery for hernia where I did have some issues afterward for a bit, but more important to me was the fact that my brother, who had survived a surgery for an abdominal aortic aneurism last year, suffered a post surgical infection which left him in intensive care for 8 weeks and eventually proved fatal.

Thus, I have gravitated to radiation treatment. After all my consultations and research, and lots of soul searching, I have decided upon the Prostate Cancer IMRT as practiced at the UW Cancer Center under Dr Ritter. This program consists of fewer treatment sessions than usual (28 sessions-5 and 1/2 weeks) but using a heavier dosage per treatment so that total radiation is 81 Gys. This program has been used for some years at UW, and has been very successful, with fewer side effects and lifestyle impacts that the previous longer treatment programs. Not that those risks are gone, but hopefully, the chances are a bit better. I will be starting the treatments in October and if all goes well, should be through with them by mid November, although of course, radiation after effects may take some additional time to pass.

Long update, I know, and certainly the path I followed to get to this point is my unique one and not necessarily for anyone else. But I hope that perhaps some of the thoughts and processes for me to get to this point may help someone else who is still trying to decide what to do.

UPDATED

November 2012

Just completed a 28 session course of daily image guided IMRT at University of Wisconsin Cancer Center under the care of Dr Mark Ritter, Chief Radiation Oncologist. Although a shorter than common program (UW has been using this shorter course for 9 years) total equivalent radiation dose was 82 Gys. No real problems during the therapy, other than some urinary issues, with increased urgency and frequency, especially towards the end of the sessions. Dr Ritter prescribed Flomax for this, and that has helped some, especially at night. Had a PSA check shortly before beginning radiation, with PSA at 4.5, so there is a good baseline to follow when my first checkup will be due, about mid January 2013.

UPDATED

January 2013

Had my first follow up after IMRT today (Had PSA test run a couple of days ago). Meeting with Dr Ritter at UW Cancer Center, found the PSA reading had dropped to 2.6 (It was 4.5 prior to starting radiation treatment). Good news, obviously. Dr Ritter called it almost a "text book" drop and was very pleased with progress to date. While still have some residual urinary frequency issues some 7 weeks after the end of radiation treatments, it is improving week by week. Flomax in the evenings also helps a lot, and lets me get through the night without having to get up too often (frequently only once a night now). The burning sensations are just about completely gone as well. No ED issues at all either, so overall doing pretty well. Will have another PSA check in 3 months, so hope that goes as well.

Hope all my fellow travelers on this long road are doing well also.

UPDATED

April 2013

It has now been six months since I started (and completed) IMRT treatment at the U.W. Cancer Center. Just got the results of my latest PSA tests, and the level has dropped to 1.1, less than half of the previous level 3 months ago (2.6). My doctors are very pleased with the progress/status, but obviously not half as much as I am. While no one can predict the future, or what the next status will be, this steady down trend is most promising would seem to indicate that the radiation is having the desired therapeutic effect on the cancer. I still have some level of side effects from the radiation, but nothing I cannot deal with so all in all, pretty good news so far.

UPDATED

July 2013

It has now been 7 months since completing IMRT at the UW Cancer Center. PSA continues to fall, although the drop from 3 months ago is very small this time (1.1 to 1.07). Still, as Dr Ritter notes, it does continue the downward trend, and irregular drops such as this are not uncommon. While most of the effects of the radiation treatment have faded, I still do experience some urinary issues, with frequency and urgency, especially at night. This even though I continue on Flomax (actually Tamsulosin). Advised by Dr Ritter to up the double up on the dosage for a bit, to see if that helps. Overall though, I continue to improve and am feeling fine so far as the cancer and its treatment goes. Not scheduled for another visit with Dr Ritter for 6 months, but will continue with PSA tests at 3 months intervals for a while longer to see how that goes. But barring some unexpected rise in PSA or other evidence of biochemical failure, will just have to wait out the next few years to see how it all goes. Hope all of you here at YANA continue to do well with your chosen treatment also.

UPDATED

October 2013

Just got the results of my lastest quarterly PSA testing back and I am not sure what to make of it at this time. The last quarterly PSA test (July) showed a continued downward trend, although it was a very small decrease from the previous (only about .1). This latest test, however, the PSA level has jumped back up to 1.65. I am not sure what to attribute this rise to. The oft mentioned "PSA bounce"? Or perhaps just some prostate irritation or infection? In any case, it is not a comforting number, even at this point, one year after starting radiation therapy. I know that one bounce does not mean impending biochemical failure, but I have to admit that the numbers are not what I was hoping to see at this point. Have had the results forwarded to my radiation oncologist (Dr Ritter, at UW Cancer Center) so will have to see what he says about the results thus far, but I expect him to simply wait until the next test results in January before making even a preliminary assessment. The next three months will not, I suspect, be a very comfortable time of waiting. Hope you rest of you YANA folks are doing well and keeping up things also. Take care.

UPDATED

March 2014

Well, after two consecutive rises in PSA levels, the most recent test level has dropped, this time to the lowest since prior to radiation treatment. A most welcome development which does, I guess, indicate that the two previous rises were just an anomaly-the so-called PSA bump which sometime. At least that is what I hope. Needless to say, I am glad that the levels are once again continuing their downward trend, and hope that it continues to a nadir of .5 or less as the year goes on. However, the Prostate Cancer, as important as it is, has become of secondary importance since shortly after Christmas of 2013 I was diagnosed with early stage lung cancer as well. Had major surgery to remove most of one lung in January, so that has now become my major focus. I was most fortunate in that the center treating the one cancer is also one of the to cancer treatment centers for all types, so both are now being treated at University of Wisconsin's Carbone Cancer Center and there is a relatively good degree of coordination in the treatments.

UPDATED

February 2015

Well, it has now been a little over two years since completing IMRT for my prostate cancer, and the PSA levels have fallen to about .5. My oncologist considers this to be pretty much the nadir, and is pleased that it the levels went down pretty much as hoped. At this point, considers the prostate cancer to be in full remission and likely to stay that way.

That said, prostate cancer is, as I noted in a previous update, not really the major issue in life any more, nor is likely to be an issue given the slow growth of most such cancer. After being diagnosed with early state lung cancer at the end of 2013, I under went surgery to remove two lobes of my right lung to remove cancer. This appeared to be successful, and CT scans over the next months indicated no signs of cancer remaining. Then, following several other, unrelated surgeries during the year, the final scan in December 2014 showed a small tumor growing in what is left of my right lung. Given my reduced lung capacity, and issues with the left lung, this new tumor was considered inoperable by my surgeons as it would require removing what is left of the lung. Not enough capacity remaining made such surgery risk unacceptable. So next best option was full targeted radiation (highly image guided radiation) of the tumor, which would hopefully cause less damage to the lung. This is combined with weekly chemotherapy to enhance the radiation effects. About 2/3 of the way through that program now, with less than two weeks to go. Won't know any actual results or success for some time of course, since the radiation can/will take some time to works its magic, and then can scan for status.

UPDATED

September 2015

Well, at my last update, PSA was around .5. That did go down to .44 on the next check, but then started back up slightly, going to .5 again, then to .6. But on the last PSA check, it is back down, even lower going to .37 so my oncologist is pleased, as am I. Just normal low bounce according to her. Not having any real troubles related to the prostate cancer, which is good since I am still dealing with the lung cancer and that pretty much dominates all. Seems to be in remission after a recurrence end of last year, and radiation and chemotherapy at the start of this year. Most recent scans have shown scarring and tissue, but no tumor, so perhaps in remission for now.

UPDATED

October 2016

I have not updated my status for some time now, so perhaps it might help others to know how the treatments I selected worked. Having chosen radiation, it was very successful, and has continued to be successful. While I am still having PSA tests done every 6 months or so, they have remained relatively unchanged for a couple of years now, remaining well under 1, as expected. My doctors have been pleased, although I have not needed to see them, again for over a year as the review the PSA and are convinced that the prostate cancer is gone. The only residual side effect that remains from the treatment is some problems with urination, since it remains frequent, including a couple of times every night, waking me up. I do take Flomax regularly, which helps control this, and have grown used to the situation, so consider this fairly minor. Unfortunately, I have been battling other health issues for several years, but at least the prostate cancer is not an issue for me any longer and I hope others have the same successful treatments in their battles.

Jim's e-mail address is: jimwis43 AT gmail.com (replace "AT" with "@")

NOTE: Jim has not updated his story for more than 15 months, so you may not receive any response from him.


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