YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

SILVER

Tim Canney and his wife Marshell live in Savannah, Georgia in the US. He was 47 when he was diagnosed on May 8, 2003. His initial PSA was 4.59 ng/ml, his Gleason Score was 3+3=6 and he was staged T1c. He elected Watchful Waiting as his treatment of choice. Here is his story:

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:

1. My relationship with my wife has got better in every way. We have achieved a closeness I don't see in many couples.

2. 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.

3. 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.

4. I have been thinking about that recent W atchful 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"):

2/28/03 During blood work due to a medication change my PSA was discovered to be 4.25 ng/ml. I was referred to a Urologist.
3/21/03 I met with the Urologist. He recommended a biopsy. I requested a repeat PSA.
4/21/03 I met with the Urologist. The repeat PSA was 4.59 ng/ml. He recommended a biopsy.
5/8/03 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.
5/21/03 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.
5/24-5/31/03 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.
6/03 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.
6/13/03 I met with a radiation oncologist. He recommended radiation seed therapy.
7/11/03 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.
7/25-8/2/03 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.
8/6/03 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.
8/18/03 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.
9/2/03 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.
3/19/04 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:

7/19/04 PSA results 6.4. Some increase but it doesn't seem too scary to me.

10/27/04 PSA results 4.5. Very good!

1/24/05 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.

2/14/05 PSA results 4.9.

5/27/05 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.

1/24/06 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.

Be Well

Tim in Savannah .

 

UPDATED

February 2008

 

 

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."

 

UPDATED

June 2008

 

 

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.

 

UPDATED

December 2008

 

 

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".

 

UPDATED

February 2009

 

 

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.

 

UPDATED

August 2009

 

 

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.

 

UPDATED

November 2009

 

 

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.

 

UPDATED

June 2010

 

 

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.

 

UPDATED

January 2011

 

 

September 15, 2010 PSA results 6.51

December 17, 2010 PSA results 5.91.

 

UPDATED

July 2011

 

 

March 22, 2011 PSA results 7.95

March 31, 2011 I met with my urologist. Nothing unusual was noticed on my DRE..

Tim's e-mail address is tcan4@comcast.net