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Melvin Billik and Cheryl live in Michigan, USA. He was 63 when he was diagnosed on December 2, 2009. His initial PSA was 4.19 ng/ml, his Gleason Score was 4+3=7 and he was staged T1c. His choice of treatment was Surgery. Here is his story.

Life was good most of the time. As I got older, my routine annual physical seemed to morph from a pleasant experience to an anxious one. All of a sudden, my cholesterol was a tad high. Okay, we had to watch that. But, overall, I had no complaints. Just a borderline high cholesterol count and then this slightly rising PSA, but no major concern as my numbers tended to be about 2.XX. One year it did have a sudden rise, but after a round of Cipro, it came back down.

Unfortunately, that little concern took center stage a year ago in August, 2009. My PSA went from 2.90 18 months earlier to 4.01. This time, the Cipro didn't work. My next reading 3 months later was 4.19.

I really didn't want to go through a biopsy. Basically, I was a wimp. I had read reports from other patients that described the procedure as no problem. Unfortunately, others described the procedure as extremely miserable and painful.

Anyway, I got referred to a local urologist. I was not pleased as he scheduled me for a biopsy without even seeing me. It just rubbed me the wrong way. Was I just a big dollar sign to him and nothing more? The final straw was when I discussed my fear of this potentially painful procedure. He just brushed me off. He seemed unconcerned. Later I found out that one of my friends had the procedure done by the same guy and it indeed WAS extremely painful. In retrospect, I may have been unjustly critical of the local urologist. I realized that he was extremely busy and perhaps he was trying to do me a favor by scheduling the biopsy before even meeting me. PERHAPS.

Anyway, hoping to avoid a biopsy, I traveled wo hours to the University of Michigan Medical Center to get a second opinion. The doctor I saw there (Stephanie Meyers) was very nice. She LISTENED to my concerns. She suggested that since I was really borderline (my DRE (Digital Rectal Examination) was completely normal and my PSA Free test was a borderline 24%), I could do the new PCA-3 test. This was a new test, very specific for PC and not influenced by infections and BPH. All I had to do was urinate into the glass after the DRE. I jumped at that chance.

Unfortunately, the results of that test was not borderline at all. The cutoff point was 35. Mine was 75.9! In short, it was biopsy time. I decided to have the biopsy done at University of Michigan. The urologist offered to do it under sedation (like a colonoscopy). Meanwhile my local urologist had a fit that I wouldn't have HIM do the biopsy. He pretty much let me know that if it turned out to be PCa and I needed surgery or any other kind of follow-up, he would be reluctant to be my doctor. I didn't say much because I no longer wanted him as my local urologist. Fortunately, there was another highly-recommended local urologist and I've been pleased with my follow-up care with her. But I digress…

I had my biopsy on November 30, 2009. The results were not good. On December 2, 2009 I got the call that we all dread, the kind of call that other people get, but not me. But I did get that call. I had prostate cancer. My GS was 4+3. Five out of 12 cores had cancer. I now had to get myself together and decide what to do.

Fortunately, I had been doing a lot of reading/studying about PC ever since that PCA-3 test result. I narrowed down my surgical and radiation choices to University of Michigan (UMICH) Hospital or Dr. Menon at Ford Hospital. I scheduled visits at each place. I first went to UMICH and saw the surgeon and a radiation specialist. They were pretty open about the pros and cons of each procedure. I liked both of them, but decided (after a lot of study) that surgery was the best choice. I figured I had a second bullet, SRT, if needed. I then saw Dr. Menon's team at Ford Hospital. I was extremely impressed with them and chose to have my surgery done there. Frankly, I was comfortable with UMICH and Ford. But my wife and I both felt that Ford was the better choice.

I had the surgery on 1January 26, 2010. I am a college professor and I love teaching. It was not easy leaving at that point as our term still had 4 weeks to go. But with a G4+3 and having carefully decided on a treatment option, I didn't feel I should wait. It was a good decision as my pathology came back not so good.

The surgery itself went well. Dr. Menon uses a SP Catheter, not a Foley. This is much more comfortable for the patient. While it was no walk in the park, my surgical recovery was uneventful. I always wondered what incontinence would be like, and I found out. No fun. However, at the worst I was requiring one pad per day and that was barely damp. As time went on, things got better and I discarded the pad after a month (I really didn't need it the prior 2 weeks). I did have a lot of urgency issues. When I had to go, I HAD to go. But by 4 months post-surgery, that urgency greatly diminished and currently it is rarely a problem. In fact, it happens maybe every 2 weeks and I just smile as it really reminds me how far I've come in that department. At this writing, ED is a problem, but it really isn't an issue for my wife and I. I am also noticing improvement, but it's a work in progress.

Oh, one positive item. Before my PC, I had BPH (Benign Prostate Hyperplasia). I had difficulty urinating at times. Well, I can tell you that removing the prostate removed the problem. I do not urinate like a teenager or a racehorse, but there are no problems. I am very pleased with that.

I alluded to my pathology. That is my MAJOR concern. It's not good. The pathology confirmed the GS 4+3. I also have one focally positive margin (<0.5 mm). I also have extra-capsular penetration and peri-neural invasion. On the positive side the seminal vesicles are clear and the lymph nodes extracted were clear.

My post-op PSAs are a bit worrisome. The first reading in March was 0.01. The next one in late June was 0.02. Certainly that's not bad, but as a mathematician, I am concerned about the trend. [The ultra-sensitive PSA tests are even more variable than the standard tests and often gve rise to unnecessary concern.] My next reading is set for September. I hope I am wrong, but I am concerned that I am heading for that second bullet, SRT.

Frankly, the biggest adjustment for me is living with a cloud overhead. I seem to exist from PSA test to PSA test, every 3 months. Starting 2 weeks before an upcoming test, it weighs greatly on me. After the test, I can breathe again, knowing that I got a 3-month reprieve. I realize PSA scores of 0.01 and 0.02 are fine, but I am hoping this is not the beginning of an upward trend. I'll know more at the end of September. I am slowly adjusting to this new life.

 

UPDATED

January 2011

 

 

Since I posted last, my post-op PSA has been steadily rising. Initially, it was 0.01. Then it went to 0.02. Then 0.06 and recently 0.13. These are 3-month intervals, so my PSA doubling time is scary as well.

My doctors indicate that technically, according to AUA guidelines, I do not have a BCR (Biochemical recurrence). But they also acknowledge that it appears to be just a matter of time.

We have decided that I will do one more PSA on February 15, 2011. Unless a miracle occurs (ie: no increase), I will start SRT (Salvage Radiation Treatment) quickly, within 1-2 weeks. This is pretty darn disappointing (at times, depressing). Since my first indication of PC at a routine physical in August, 2009, every test has been worse than the previous one. Although I have "just" a GS 4+3, I worry that this might be a very aggressive cancer.

 

UPDATED

May 2011

 

 

Well, as I feared, my PSA kept rising. On March 1, 2011 my PSA had risen from 0.13 to 0.27. This is scary as it is a 2-month doubling time. So, finally, I had to acknowledge that the beast was back (never left, I guess).

I started SRT (Salvage Radiation Therapy) on March 22. Later today I will finish my last of 38 sessions (total 68.4 GY). It has not been fun. Physically, I had some burning in the bladder and anal areas. I found that adjusting my water drinking helped tremendously. They told me to drink water beforehand. I had been finishing the water just before hitting the table. I soon realized that it takes 20-30 minutes for the water to hit the bladder, so by drinking earlier, things went better. I do have some fatigue, but fortunately I didn't hit a brick wall. I've been told that it could be 1-2 months before the fatigue resolves totally. But it hasn't been too bad. I do have hemmrhoids and we were concerned about having problems in that area, but so far so good. Some irritation, but minimal. No bleeding and no bowel problems (I had diarrhea one day, but not sure if it was due to the SRT).

Anyway, I've also decided to consult with Dr. Scholz. My appointment will be on July 11. I will fly out from Michigan to see him. We will also make a vacation out of it, as my daughter and a few friends and relatives live in the area. I'm hoping the SRT is curative, but I know the odds are not with me (the MSK nomograph gives me a 40% probability of 6-years reccurence free). So, by seeing Dr. Scholz in July I hope to have a follow-up plan in place should the beast return again.

Enough said!

Mel

 

UPDATED

November 2011

 

Well, things continue to get worse. A month after the conclusion of SRT(Salvage Radiation Therapy), I hit some difficult medical problems.

It started with fatigue and then severe heart palpitations. This continued for a few weeks. Then some chest pain entered the mix, but it was clearly muscular (I could reproduce the pain by assuming certain positions). But things worsened.

One day, the pain turned into a squeezing pain. We went to the ER. I was there for a couple of days and passed all the tests, including a stress test. I was released on a Tuesday and we flew out to California two days later to see my daughter and keep my appointment with Dr Scholz. Amazingly, in a few days, all the symptoms totally disappeared. We never figured out the cause.

I figure it was either the SRT or lipitor (I started on that a few weeks before the onset of these symptoms and then stopped). Meanwhile they did a PSA at Dr. Scholz and it was a very disappointing 0.60. A month later it was 0.75. Then on 11/1/11 it was 1.38, confirming the SRT failure.

I had a telephone consultation with Dr. Scholz on 11/7/11. It is time for the next phase, the dreaded HT. Here's the plan: Over the next month, I'll get a bone density scan, a bone scan, and a CT scan. At the end of December I'll start Casodex. On 1/3/12 I have an appointment with my local urologist to get the lupron shot. I'll also be adding avodart so we have a triple blockade, ADT3. I'll also be taking fosamax and femara if the casodax causes breast tenderness and/or growth.

This is quite depressing, frankly. But, life goes on. I still love my work. In fact, since I returned from surgery I have not missed a day!

It is understandable why Mel is concerned by the thought of ADT. Some men do have adverse reactions. Others, like me, find the side effects tolerable. Perhaps these words of Platinum Member, Chuck Maack may provide some comfort:

ADT is NOT the horrendous treatment that some claim it to be, and many of those who claim so never even had the treatment themselves – they rather echo someone else’s comments who may have experienced some of the side effects that can occur, but that person likely had no idea how he could have relieved whatever side effects he is complaining about. “I” have been on/off/on/off and only recently back on androgen deprivation therapy FOR THE PAST 15 YEARS!

Read more on Chuck's site The Prostate Advocate.

 

UPDATED

January 2012

 

Well in my previous update I stated "It is time for the next phase, the dreaded HT. Here's the plan: Over the next month, I'll get a bone density scan, a bone scan, and a CT scan. At the end of December I'll start Casodex. On 1/3/12 I have an appointment with my local urologist to get the lupron shot. I'll also be adding avodart so we have a triple blockade, ADT3. I'll also be taking fosamax and femara if the casodax causes breast tenderness and/or growth."

Well, I'm not yet on HT. I did do the tests. My CT Scan found all sorts of stuff, but nothing of a cancerous nature and in fact nothing of any clinical significance. My bone density test was fantastic. I did the special QCT bone density test which is generally "tougher" then the Dexa scan (ie: more likely to show osteoporosis). My score came out +2.55 which puts me in the top 1/2 of 1% of 65 year olds. It also gave me a score of 0.38 on a comparison to 35 year olds, so I am nicely above that median, which is amazing.

The bone scan did show some non-specific uptakes in the shoulder area. I visited a local oncologist and he concurred with my family physician that this is probably minor arthritis. I then scheduled one more telephone appointment, this one with Dr. Lam. He is Dr. Scholz's partner and their office strongly recommends that you consult with both doctors.

Anyway, my PSA was rising with a doubling time of just over 3 months. This is bad news. But he did say I could try just doing Avodart. This is the third drug of the triple blockade (the other two being casodex and Lupron). Very often, patients are put on the triple blockade. If they respond well, after a year they are given some time off the HT but they continue with the Avodart as it seems to delay the time until they have to get back on the HT. Dr. Lam said we can consider this the "off cycle" and see what happens. So, I'm trying that.

My next PSA will be in late February and then I will have a follow-up telephone conversation with Dr. Lam the first week of March. Since that conversation I have read that they are experimenting with Avodart in this way, so we will see what happens. If it slow down the doubling time, I might have another reprieve. But it is obvious that HT is in my future!

Melvin's e-mail address is: billikm@yahoo.com