Summary Post Seven Years and Counting

I would like to give a summary of where I have been and how I am now with my prostate cancer. I was diagnosed in October 2007. The cancer was initially evaluated as Gleason 6, but, to my surprise, analysis after the operation confirmed that the correct assessment was the more disturbing Gleason 9. I leave it to you to read about Gleason 9. The short version is that the prognosis is no where near as good as for Gleason 6. My prostate was removed in January 2008. In the fall of 2008 my PSA began to rise. I began a course of 40 days of radiation that continued from late November into February 2009. At that point the cancer seemed to go into remission. The PSAs remained low, which is to say below .2. Numbers lower than .2 indicate that you are cancer free.  However the PSA did not stay low. In 2012 (I think) the PSA began to rise again and I began Lupron shots. Those shots, received every four months, successfully drove down the PSA until November 2013 when the numbers began to rise again. Finally in July 2014 the urologist deemed that he had done all he could and told me to see an oncologist. The numbers had quickly risen to about 5.

Then began a series of tests that lasted for weeks. First I had a bone scan. That revealed that I had an abnormality in my hip bone, my iliac crest, an unusual place to have a tumor, he said. But to investigate the abnormality I next had a biopsy of it. It is cancerous, prostate cancer. At the same time I was having blood in my urine regularly, usually just very small clots but some times a red gush, so I went to a new urologist (actually the one who had diagnosed me originally as having Gleason 6 prostate cancer). He decided to conduct a cystoscopy. As a result he decided that the bleeding was caused by lesions from the radiation years ago. He told me not to worry about it as I was not losing enough blood to cause anemia. But he ordered CT scan of my kidneys just to be certain that there was no tumor in them causing the blood. There wasn’t. However, the scan showed that I had something on my liver, possibly cancer, and two other areas, possibly tumors in my abdomen.  My GP intervened, scheduled an ultrasound of the liver which revealed no cancer in the liver. Whew. The two areas were deemed either tumors or scar tissue. In a subsequent evaluation my initial urologist suggested that one of the lumps was probably scar tissue from the operation he conducted on me. However, he felt that the second one, near my rectum, should be investigated to make sure that if it is a tumor it is prostate cancer and not some other cancer.

Off I went to see an oncologist. The oncologist placed me on one of several drugs that are now used to fight people with my condition. The first was casodex. It failed. That means that after three months the PSA continued to increase. In December 2014 I was changed to Dexamethasone, a steroid that he hopes will shrink the tumors or at least retard the growth of the tumors.

At this point, today, as I write, I feel fine. I am not particularly aware that I have cancer. Nothing hurts. I maintain an active exercise life. I work out three times a week at my university gym and I rock climb once a week at my university wall. The exercise won’t cure me but it has put me in shape so that my body is more able to withstand the rigors of the drugs I am taking.  And I like both exercises.

It is common for me and people like me to talk about fighting cancer every day, but right now that is often not true of me. I go on with my activities and I certainly never forget what is growing in my body, but it does not weigh on me.  When I read the report written by onne of the oncologists that I saw in the summer, I found that he used the word “asymptomatic” to describe me. I guess that explains my current ability to go forth a bit blithely with my daily chores. I am not so foolish as to believe that I will continue like this for years, but right now I thoroughly enjoy it and my days.

I do want to discuss being your own advocate. After they found the tumor in my hip bone, I saw two oncologists. They both told me that they would treat my case the same way. As a result I chose the one who is here in Menomonie and is connected to the Mayo health system. I am satisfied with that. I also decided to use my local urologist to evaluate the blood in the urine. In this situation I have had to manage my own care.  The troubling thing was that I never heard from the urologist the results of the CT scan that indicated that I could have liver cancer. I did not find those results until I contacted my GP who relayed them to me. He is the one who set up the ultrasound.  I decided not to return to that urologist. Instead I called my old urologist who is in the Twin Cities area and returned to him to have him evaluate me when the bleeding did not stop. He gave me a thorough exam, including another right-there-in-the-office cystoscopy, assured me that my bleeding was from the radiation lesions, and put me on an antibiotic because that bleeding is sometimes worsened by an infection in the bladder. The antibiotic worked for about three weeks, but today I had some bleeding, both a gush of red and some clots one other time.  We will see.

And now to my physical condition. First, the Lupron has ended my sex life and sex drive. I have been surprised to find that I am ok with that condition. My wife and I are deep friends. Our marriage is much more than time in bed and actually has deepened during the years I have had this disease and the years when the sex ended. But I have another issue—incontinence. While this problem often occurs after surgery, mine did not appear until autumn this year. I wonder if it is related to the tumors. At any rate I do not have incontinence during the day, but do at night. I am amazed at amount of urine my body pumps out of me at night. I wear Depends at night, often changing three or four times, each time the absorbent pad soaked to capacity. I have tried no alcohol, no caffeine, even no liquid after 7 pm. Those courses of action do not deter the bladder. So I have to live with this. I have learned to buy the packages without embarrassment and to tell others—and now you—of my condition. In addition, since the Depends sometimes leak, I have to sleep with absorbent pads under me and some nights I have to change them. But that is better than wetting the sheet and mattress pad and having to do a large unexpected laundry the next morning.

I have also had issues with defecating. I guess the easiest thing to say is that the stools often don’t drop easily into the toilet. So I have a wipe that is rather like wiping a baby’s behind. You don’t just clean the anus of the baby, you also clean the cheeks. That happens to me. Not a lot of fun. I tell you this so you know where I am. I exercise a lot. I eat well. I laugh a lot, and I have new experiences with the toilet part of my life. I would rather not have those experiences, but when I consider the alternative that would end them, I decide I have figure out how to deal with this stuff.

For now that is what I want to leave you with. I have metastatic cancer. It is advanced. I have lived 7 years after a Gleason 9 diagnosis. I am very lucky. The only thing I can say is you have to figure out how to deal with it.  I am delighted to find in my emotional makeup that I can do this. I get on with it. When I wake up in the middle of the night, I worry about the hot water heater, not the tumor. I can’t fix the tumor. All I can do is deal with it, and I hope you can find the way to do that too.

Thank you for reading this. You can go back through this blog to see my recording of my journey and what I felt at each stage of the way.  Good luck with your cancer and your handling of it. If you want to talk to me, please contact me. Whatever I can do.