It has now been over 1 year since my diagnosis of prostate cancer on May 8, 2003. Now is a good time to evaluate this interesting year.
The week following my diagnosis was the worst week of my life. I got very depressed. My wife got depressed too but we managed to pull through. The week following my PSA spike was almost as bad. When I decided to test again in another 3 months things got better. I think I was fortunate to find a doctor who was somewhat supportive. This WW webring has also been very helpful. I think the worst thing about having Prostate Cancer is having a constant sense of the shortness of life. I think I will have this even if my PCa is cured.
There have been some improvements in my life:
- My relationship with my wife has got better in every way. We have achieved a closeness I don't see in many couples.
- I have discovered reserves of courage in myself I was not aware of and that I really am somewhat of a rebel non-conformist. Not many men would do what I have done in my situation. By the way, I am a member of the Libertarian Party and a Confederate Civil War re-enactor - both "rebel" activities.
- I have learned a lot about PCa. I am sharing what I have learned with others. Ken, a 60 year old co-worker was diagnosed with Pca about a month ago. The details of his diagnosis are very similar to mine. He contacted me and I shared as much info and experience with him as possible. He has had lymphoma 3 times. I have told him to consider WW because the lymphoma is likely to get him sooner than the PCa. His urologist (my first urologist) is recommending a radical. So far he is still considering options.
- I have been thinking about that recent Watchful Waiting study. Taking the numbers at face value you can get an idea about your chances. According to the study if you are a young man (41-70 yrs old) and choose WW:
- You have a 55% chance of getting through the 1st year without treatment.
- You have a 43% chance of getting through the 2nd year without treatment.
- You have a 32% chance of getting through the 3rd year without treatment.
- You have a 27% chance of getting through the 4th year without treatment.
- You have a 0.6% chance of dying from PCa within 4 years.
- You have a 1% chance of the cancer metastizing within 4 years.
- You have a 7% chance of dying from a non-PCa cause within 4 years.
- If you get through the 4th year without getting treated you probably won't need treatment.
Here is my Watchful Waiting history (for the "newbies"):
02/28/03 - During blood work due to a medication change my PSA was discovered to be 4.25 ng/ml. I was referred to a Urologist.
03/21/03 - I met with the Urologist. He recommended a biopsy. I requested a repeat PSA.
04/21/03 I met with the Urologist. The repeat PSA was 4.59 ng/ml. He recommended a biopsy.
05/8/03 - Biopsy reveals prostate cancer. Tumor comprises 10% of right mid prostate and 5% of left prostatic apex biopsy. Gleason is 6 (3+3) in both sides. The nurse calls me at work and tells me at 2 pm. I get very upset and go home for the day.
05/21/03 - I met with the urologist about the results. He recommended a radical prostatectomy. We also discussed other options: radiation therapy, watchful waiting and cryotherapy. I decided to investigate other options.
05/24-5/31/03 - Vacation in Virginia. Nothing to do with prostate cancer but good fun and stress relief. I adopted a "use it before you lose it" philosophy. My wife agrees.
06/03 - I intensified my study of treatment options. I started taking Vitamin C, E, and Selenium. I (mostly) quit working overtime. I started eating more fish and processed tomatoes. I started to drink green tea.
06/13/03 - I met with a radiation oncologist. He recommended radiation seed therapy.
07/11/03 - I decided to try Watchful Waiting and joined the Watchful Waiting Mailing List. I sent my first e-mail to the List. Over the next several days I got many replies. Terry Herbert's was especialy helpful. I started looking for a Doctor to assist me.
07/25-8/2/03 - Vacation in New Orleans. Nothing to do with pc but great fun and stress relief. My best vacation ever. Our hotel was in the French Quarter only 2 blocks from Bourbon Street. We even had a balcony. Drank and smoked cigars on the balcony. Thank God for time-shares. I tried Viagra. It produced a little of the desired result but it produced too much nausea to be enjoyable. Successfully tried to avoid the "p" word.
08/6/03 - I met with an oncologist. He recommended a radical prostatectomy with hormones. I told him I wanted to Watchful Wait. He said he did not have the means to assist me and recommended another urologist.
08/18/03 - I met with another urologist. He recommended a radical prostatectomy. I told him I wanted to Watchful Wait. He said he would not assist me. He also said "you won't find a doctor to help you (with WW) in this town (Savannah, Ga.)". I heard there was a Doctor in Brunswick Ga. who was assisting someone WW. I started to investigate doctors in Brunswick Ga.
09/2/03 - I met with the urologist recommended by the oncologist. He recommended a radical prostatectomy. However, he agreed to assist me with WW or in anything else I decided on. He said he would sometimes "nag" me about getting treatment. The WW will consist of a PSA test every 3 months. The nurse took blood for my PSA test.
9/4/03 PSA results (drum roll): 4.1 ng/ml. I am very pleased.
12/9/03 - PSA results 6.1. The Doctor says I have to make a treatment decision before our meeting on 12/11.
12/11/03 - Meeting with Doctor. I decided to check my PSA again to see if this is a "spike". My Doctor reluctlently agreed. We scheduled another PSA for March 11, 2004. I also discovered that I am the only man in my age range he is "WW" with. He is providing no advice about diet, excercise or any thing else. Can anyone out there help me control this beast? If my PSA continues to climb I am considering High Dosage Radiotherapy.
03/19/04 - PSA results 5.3. Not bad.
Thanks to all for your assistance in this trying year.
Tim in Savannah
Tim has update us with his latest results:
07/19/04 - PSA results 6.4. Some increase but it doesn't seem too scary to me.
10/27/04 - PSA results 4.5. Very good!
01/24/05 - Had my blood sample taken for PSA test and met with my urologist. He told me I should get treated because the tumour could metastasize. I refused. I think the risk of metastasis is low based on the studies I have seen.
02/14/05 - PSA results 4.9.
05/27/05 - PSA results 6.0. My PSA doubling time is about 5.6 years based on this measurement and my 4/28/03 measurement. This is within Klotz's WW guidline: Max PSA DT of 3 years.
9/12/05 - PSA results 6.1.
01/24/06 - PSA results 5.1. Pretty good.
11/07/06 - My latest PSA result is 5.7 from a sample taken 6/30. My previous PSA was 5.9 on 5/12. Hummm, I didn't realize the samples were so close together till I wrote this e-mail! Usually my PSA's are 3-4 month's apart. It's always good to see a decrease, especially after a prior increase.
It turns out that I cannot be in the HIFU clinical trial because I live in Georgia. Only patients who live in daily driving distance of Duke University Hospital in North Carolina can get HIFU in this trial. I don't know if the trial rules changed or not. My Dr. did all the prep work on another patient for this HIFU trial including a biopsy and now he cannot be in it. The nurse told me she would try to get him the HIFU treatment anyways. However, his results would not be counted in the report. Looks like the FDA has screwed up again.
Tim in Savannah.
On April 12, 2007 by PSA was 5.3. On November 19, 2007 my PSA was 6.1.
In November of 07 I had a consult with my urologist. The DRE was unremarkable. A young female intern was present during the DRE. I told her "The show is free."
On June 9 my PSA test result was 46.0. My doctor and I were both shocked by this sudden increase. He ordered another PSA. The result of this test on June 13 was 17.0.
Now my doctor and wife are both pushing for treatment soon. I tend to agree with them. Such high numbers and dramatic changes are definitely scary. I cannot think of anything other than cancer growth that could cause such high numbers. Do you know of anything? [Tim's alarm is understandable, but it is unlikely that the high PSA numbers he quotes are caused by prostate cancer. What is usually seen with cancer associated PSA numbers is a rise that becomes ever more rapid as the numbers double and re-double. The fact that his PSA fell almost 30 points in four days points to some other cause for the initial rise - and there are many.]
I am now reviewing treatment options. HIFU is interesting but I am not sure if it is worth the cost (which my insurance won't cover). I am also considering some form of radiation and/or ADT.
We decided to run some more tests before making a treatment decision. The tests were to be another PSA, a bone scan, a DRE and another biopsy.
July 3, 2008: PSA results 10. DRE found one portion of my prostate to be harder than the rest.
July 15, 2008: Bone Scan results negative (no sign of PCa outside of the prostate).
July 25, 2008: PSA results 8.2
July 28, 2008: I had another biopsy. The results were very similar to my 1st biopsy with no indication of growth or Gleason change. Also, the during the biopsy the ultrasound showed a lighter colored area of the prostate. My urologist thinks it is a calcium deposit. This probably accounts for the hardness found during the DRE. Due to all of these favorable test results, I considered this crisis over. We are still mystified by the cause of the dramatic PSA changes but resumed PSA monitoring at 3 month intervals.
October 24, 2008: PSA results 7.0. My PSA is almost back to it was before the "crisis".
Jan 30, 2009: PSA results 6.0. My PSA; is now less than it was before the 'crisis'. If my next PSA; is favorable (less than 6.5?), the test interval will be increased to 6 months.
Tim is having some PSA anxiety. His PSA levels have been:
Jan 30, 2009: 6.0
May 8, 2009: 6.8
August 18, 2009: 7.6
He is not sure if he should continue to WW is his PSA gets much closer to 10. His current plan is to do another PSA in 2-3 months.
November 18 2009 PSA results: 6.21 My PSA dropped about 1.5 points in 3 months. I found out after lunch and was dancing in my cube today! In the previous 6 months my PSA went up almost 2 points.
Feb. 19,2010 My PSA results were 8.99. I had a meeting with my urologist and discussed treatment options and other tests. We agreed to to a PCA3 test and another PSA test in 3-4 months. I had the PCA3 test on 3/24,. The results were 36.2. I'm not sure what the PCA3 test results really mean. [PCA3 tests are no more accurate (outside laboratory conditions) in detecting prostate cancer than PSA tests]. My doctor has not discussed the results with me. I guess he must not be very excited about them. I'm a little worried because there was such a large jump between the last two PSA tests (2.78 points) [Tim has had bigger jumps previously - see above - and see my PSA 28 Day Experiment to see how PSA levels can move around].
June 23,2010 My PSA results were 5.68. It dropped over 3 points! It feels good but I'm still very unsure what I did right.
September 15, 2010 PSA results 6.51
December 17, 2010 PSA results 5.91.
March 22, 2011 PSA results 7.95
March 31, 2011 I met with my urologist. Nothing unusual was noticed on my DRE.
10/6/2011 PSA RESULTS: 7.62
04/26/2012 PSA RESULTS 8.58
05/4/2012 I met with my urologist. I performed a DRE and found some irregularity on my prostate. We discussed my case and options. I said I wanted to do another biopsey in this fall. I may decide to have it sooner.
July 12, 2012 - Had biopsy
July 23, 2012 - I discussed my biopsy results with my urologist.
Here they are:
-Left base peripheral 10% with perineural invasion Gleason 3+3
-Left base 5% Gleason 3+3
-Left mid peripheral 60% Gleason 3+3
-Left mid 70% Gleason 3+3
Of course I was upset by these results. I am still stressed and depressed. I am now seriously considering treatment options.
8/16/2012: I met with an oncologist who does radiation treatment of pca. He told me I am still in the low risk category. Even if my PSA; increased to over 10 he could still do radiation treatment without ADT. I could even continue AS. This was a great relief. I am continuing AS but with greater consideration of treatment options. I may get treated next year.
8/22/2012: Psa results: 8.75
9/13/2012: Psa results: 8.76
12/29/2012 - Psa results: 9.94 My PSA; is getting very close to 10. Also, the PSA; velocity is increasing. Looks like treatment time is coming soon. I have consulted my urologist again. I have consulted the Dr. that does radiation treatment again. I have consulted a Dr. that does RALP twice. I have been doing more research on treatment options. The lack of long term data on radiation vs. surgery is very frustrating.
I had another PSA done on February 18, 2013. Result was 10.57 ng/ml. I have decided to have EBRT (External Beam Radiation Therapy). The targets will be implanted on March 6, 2013. I am not happy about this but I guess I have to adapt. AS was part of my life so long it became part of my identity.
Thanks so much for your support on my journey.
My treatment preparation appointments went as expected but I still had doubts about my course of action. I could not really express my doubts at the time.
On March 25, 2013 my treatment started but all did not go well. I started to cry just before the treatment was to start.. Of course this stopped the treatment. Dr. P convinced me to go thru with it even though I still had lingering doubts. During my second preparation the song "Fast Car" by Tracy Chapman was playing on the sound system. This has to be one of the saddest songs I have ever heard, sung by a woman whose voice could break your heart. One of the nurses asked if I needed anything just before treatment was to start. I said "You can turn off that music!" I barely managed to get thru it without breaking down again.
At first my treatment went uneventfully. After my 5th treatment I found an abstract from a new study by the Mayo clinic on the internet. This study concluded "In contrast to prevailing assumptions, GS 6 or less tumors do not appear to metastasize to lymph nodes." This brought my major doubt into focus. My main question was: Do I really need to be treated now?
I talked with Dr. D (Dr. P's partner) after my next treatment. I showed him the study. He talked to me for about a hour. His talk seemed to answer my question, even though I never explicitly asked it. It seemed convincing at the time. That night I was talking with my wife about my meeting with the doctor. I realized I could not remember the answer to my big question. This disturbed me.
The next day Dr. D talked with me after my treatment. This time I said "This study shows that Gleason 6 prostate cancer does not metastasize. Do I really need to be treated now? Give me a short concise answer". The following is his answer (which he also provided in writing):
"A study by John Hopkins (which he considers to be the greatest authority on prostate cancer) shows that metastasis of Gleason 6 prostate cancer is unlikely but possible.
Growth of Gleason 6 prostate cancer will probably lead to urinary blockage problems.
The longer Gleason 6 prostate cancer grows the more likely higher grade (Gleason 7 and up) will appear. Gleason grade 7 and up is much more dangerous than Gleason 6 prostate cancer."
This answer, which Dr. D also gave me in writing, satisfied me.
Since then my treatment has continued. I have noticed some possible side effects. I need to urinate more frequently. My ejaculation volume is smaller. There is another very unusual positive effect which I am reluctant to write about now. Perhaps I will write about it at a later date. Overall, my mind is at ease about my treatment so far.
My history continued:
I am finally ready to write about my extremely unusual side effect. I find writing very difficult but I really enjoy talking about my experience. I talk and think about it a lot! I am not sure if it was caused by my treatment and/or 9+ years of WW or something else. I EMPHASIZE, DO NOT EXPECT TO HAVE A SIMILAR REACTION TO CANCER TREATMENT!!! I have only heard of 2 others who had a similar reaction to pca treatment. I have found nothing on the internet about it either. I knew treatment would change my life. But I had no idea my life would change so much and I expected it to change for the worse. This is by far the most unusual experience in my life. And the experience has not really ended. Only the intensity has changed.
Sometime in April 2013 I started keeping a journal. I had never tried to keep one before. I was amazed by my feelings. I felt happier and more energetic than I had ever felt before. However, I also was easily distracted and sometimes confused. From this time on I will only sometimes date events. Though I tried to keep a journal it was very erratic. So many things were happening. Every day when I woke up I was immediately ready to get moving regardless of how much I had slept. Even at 2 or 3 am! My treatment continued but now I almost danced on the way to the treatment room! Everyday seemed to be a new adventure. At first I thought I was getting smarter. Later I thought my personality was changing. Whatever was happening was effecting every aspect of my life and I still don't have a name for it. I don't know if it was internally or externally generated. I became much more talkative and emotional. Time seemed to pass more slowly. I told Dr. P what was going on. He said he did not understand what was going on but had seen similar reactions in 2 breast cancer patients. My life was like this for about 3-4 weeks. I may have been in something like a hypo-manic state. However, all was not wonderful. I had a few problems at work and some fights with my wife. But it was nothing too serious.
By the time my treatment ended the intensity of the change had greatly lessened. But I was still different. Before treatment my hobbies were reading and surfing the internet. I still do these but not as much. I now had 3 new hobbies: Building miniatures, collecting vinyl records and photography. I used to build plastic models but I approached them very differently than I do now. Now I experiment with different finishing techniques. I am more interested in the appearance of the model than how accurate it is. Also, I create models based on my fantasies. I am still getting up earlier. I now start work at 6 am instead of 7am. I now have an earring. Most days I am still happier and more energetic than I used to be. When I had the flu in December I felt like I was in my "old normal sick" state.
My prostate cancer treatment went well and my post-treatment PSA; results have been good. Negative side effects are minimal. My last was done about 5 months ago. My PSA; was 3.4. This may seem high but my PSA; was greater than 10 before treatment. Dr. P was not concerned about it. I have my next follow-up in April.
I had another follow-up with my radiation oncologist and PSA; on 4/29/2014. Dr P must have been concerned about my stress. He called me with my results within 3 hours of the visit. The PSA; result was 0.94ng/ml. We were both pleased. I told Dr. P to tell his tech's this: Not only do you sometimes cure cancer which is amazing in itself; sometimes you change peoples lives for the better.
So far my only negative side effect is hot flashes. I usually have 1 or 2 a day. They last about 10-30 minutes. They are unconfortable and unexplained. My urinary function is a little different from pre-treatment.
My mental state is usually good. I have noticed that I am close to my old 'normal' on work days. However, the longer I am not working, the better I feel and the more energy I have. On Sunday I am 'buzzing' pretty good! I don't remember ever having this much energy before treatment. I am really looking forward to my vacation in June.
I had another PSA; on 12/5/2014. The results were .61 ng/ml. I am not feeling as good as I was on my last update. I feel I am back to my pre-treatment normal. But still I am not feeling bad. I am having some minor problems with hemorrhoids.
On June 17, 2015 I had Psa. The result was 0.91 ng/ml. Result was a small "bounce" from previous. On Nov. 20, 2015 I had another PSA. The result was 0.8 ng/ml. Nice to see a little decrease.
It is getting close to 3 years since my treatment. I had hemorrhoids before my treatment. Since then, they have gotten worse and sometimes bleed. Dr. P says the treatment did not help matters. Also, I seem to be more vulnerable to colds and the flu since my treatment.
On July 7, 2016 I had a PSA and the results were .64 ng/ml.
On January 11, 2017 I had a PSA and the results were .60 ng/ml.
It appears my PSA has reached its nadir and is flat. I am having issues with ED and urination. I wake up about 4 to 5 am to urinate. I usually get up at 5:30 to get ready for work so this is causing some sleep loss. Same days the frequency is annoying too. It you want more info on the ED please send me an e-mail. The ED issue is not unusual for someone 4 years after radiation treatment.
Tim's e-mail address is: tcan4 AT comcast.net (replace "AT" with "@")