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Kenneth Horn lives in New Hampshire, USA. He was 59 when he was diagnosed in January, 2009. His initial PSA was 53.00 ng/ml, his Gleason Score was 7, and he was staged T1c. His choice of treatment was External Beam Radiation (Intensity Modulated). Here is his story.

Like many others I started to notice issues discomfort when urinating and frequent late night wake ups. Since I had prostatitis in my 30's I knew it was an issue.

Went to Doctor in early December 2008 and he performed DRE (Digital Rectal Examination) as well as PSA test. Result came back and my PSA was 53.0 ng/ml.

Scheduled visit to Urologist where after he examined and talked he felt biopsy needed. Biopsy was performed early January 2009 - 8 cores taken. On January 23, 2009 doctor informed me I had cancer. 6 of 8 samples showed with a Gleason score of 7. Stated that it was 3 + 4 and with PSA level was staged at T3. [The PSA level is not part of the staging process which is described here. It seems that this notional stage may have been from the Partin's Tables.] I then had complete Bone scan and Pelvic MRI with die injection. Both came back negative.

I then had to decide on treatment. Believe me no easy thing. Saw Radiologist and Surgeon. Surgeon wanted to perform complete removal. Radiologist would perform IMRT treatment over 8 weeks along with Hormone treatment. Bought Walsh's book and read. Read some online and talk with someone who had gone through surgery. On February 23 met with Urologist and decided on radiation with hormone. Started treatment the next week March 1st 2009.

Can give more on how treatment went if like.

Thanks

UPDATED

September 2009

After finishing my radiation treatment at end of May I completed one more month on Lupron. Scheduled to visit doctor at end of August.

I would have to say the radiation treatment for me was not all that bad. After first 3 weeks experienced some bowel issues but was minor. Toward the end I was noticing more fatigue.

The hormone treatments consisted of one shot each month for three months beginning in April. Minor side effects I experienced were hot flashes and some aching discomfort. Not sure if I would stay on this if needed for long term.

My urinary problems are minor now. Flow is good still have the wake up calls at night but only once or twice at most.

Lab work was performed first week of September. Report came back with a PSA of 1.57. Doctor would like to have seen zero, of course so would I, but for now will do watch and wait till end of November when I will retest for PSA.

Here's hoping for good results then.

UPDATED

December 2009

Has been six months since last radiation treatment and Lupron injection. Visit to doctor this week in December and was pleased to find my PSA was 0.3. and doctor said prostate felt normal.

His words "you beat the odds". It may be what this is all about. I am scheduled for another check-up in March along with a full bladder scan. Sounds like fun.

Do I believe I am cured? Don't believe they have found a cure, I am just beating the odds : ) Well here's hoping for a great Spring visit.

Keep beating those odds my fellow YANA members!

UPDATED

November 2010

Well has almost been two years since I first received my diagnosis. It has been quite a ride.

In February of this year I came down with Diverticulitis. I was taken to hospital and had surgery to remove a portion of my lower intestine and a temporary colostomy (reconnected in July). I wondered and asked if this was from the treatment of my prostate cancer was told it was not. Something for all to think about.

I had never had a colonoscopy I probably should have. Did the biopsy, marker implants, and radiation aggravate my colon? Ask your doctor about it may save yourself some headaches.

Okay back to my main issue prostate. I have seen my PSA increase over the last year. I just finished latest reading at 1.47. The Doctor says I have doubled since last time and wants to look at castration. [Presumably this would be 'chemical castration' - intermittent ADT rather than physical castration or orchidectomy.] He believes that this will buy time. For me I will read more and try to weigh and understand options. [The so called radiation "bump" occurs in many men who have chosen radiation treatment in this type of time frame. In those cases the PSA rises (possibly due to radiation proctitis) and reaches a plateau before descending or stabilizing.]

Hopefully I can post more on this journey as time goes. For now stay happy, enjoy life and get that Colon checked :)

UPDATED

April 2012

Well here I am after long break to fill you in on my last year or so. At beginning of 2011 my PSA was doubling and rising.. doctor was concerned so a decision I needed to make as what treatment to do. Was either go with Hormone therapy, probably Lupron or.. yes look at Orchiectomy. It was suggested to me earlier because of the rate of rise of PSA. I waited to see if it would continue to do so.. it did. Doubling again. So now was decision time. My thoughts on Hormone is this.. to me its like putting a wet blanket on smoldering fire. I have read where people go on...then off... then on. And each time the side effects are there. Some continue and seem to do well others struggle. Also I wondered what happens as testosterone levels return. This is no easy decision I had to think about. Also the costs start. Lupron in most cases are not covered and here the cost is about $850 a month. So in June I decided to go through with the procedure. Was easy to go through..physically. What is like to have ones testosterone go to nil is another. I am sure many who have done hormone treatment know what this is like. Just in my case it is permanent. A month after my free testosterone was no detect and testosterone was 5ug/l ..very little my PSA was 0.64. About a third of what I was two months earlier.

My recent PSA in February of 2012 was 0.46. So now I wait to see what next. As I read through stories I see this path little taken and feel I am going down a path least traveled. So only time will tell what and where this path leads. I wish well for all who travel through prostate cancer for each has decisions to make along the way. Let's hope for better always.

UPDATED

August 2012

Quick update. My recent PSA is 0.54 on 6 month follow-up after February check. Basically no change,so far, so good as the doctor said. For me is just wait and monitor every 6 months. Has been a year now without any detectable testosterone. Like anything the longer one goes the more normal one feels. Normal in that I spend less time wondering what it is I am missing. Hope to be back in 6 months for update.

UPDATED

September 2013

Has been a year since update guess one looses track of time. My PSA; has doubled in last year still only slightly above 1 but rising again so Urologist had me connect to an oncologist. We decided to wait for 6 months, see where PSA is and in spring do a complete bone scan to have a 5 year base line. So not much more happening till spring. Best wishes to all those who seek answers to this thing we call Pca.

UPDATED

May 2014

My PSA last visit was rising have hooked up with oncologist. Will do testing again in August. Otherwise all is good.

UPDATED

October 2015

I have not been updating sorry for that. I am sill alive and well having made it through this many years. I last saw my Urologist and Oncologist last year. Since nothing more was detected I am just monitoring my PSA and seeing where it goes. It has just about doubled in last year from 1.6 to 3.2 so at this rate not sure. As we all see and know most times after about 8 years one will see a trend. The treatment I chose and subsequent lowering of my testosterone has slowed what was fast becoming a doubling every 6 months to what appears a year. I plan on another checkup soon and eventually another bone scan. What I know is each person's decision and treatment should be done with understanding and belief of what best fits them. There is no magic bullet. Will hope to post more next year. Have a great holiday season. See you next year.

UPDATED

November 2016

I have not updated in awhile. It has been a year since I last wrote. My latest blood work shows my PSA has about doubled in that time. Because I have had very low Testosterone over the last 5 years (12 ng/dl total..1.5 pg/mL free) my Oncologist suggested a Bone Density scan. The results were as expected. I have osteopenia which is early stage of osteoporosis. Much like women get at this age due to hormone reduction. Of course I can not take hormone replacement since that would totally defeat the purpose. I am hoping that my PSA will slowly double and provide me with a few more good years. I will soon be 9 years since I was diagnosed and considering my initial PSA was over 50 and biopsy score Gleason 7 it is not bad I think. It has been a little more difficult to get moving in the morning. I have done nothing really different since my treatment. I take 2 Excedrin every day and up to this year would walk about 3 - 4 miles a week. Now its mainly my lower back and hips that start to complain after 1-2 miles. I am due for another blood work in February so will try and update the results. Remember each persons journey is unique.No two are the same. Understanding your decision and treatment, working with doctor and keeping a positive attitude helps I believe. I wish all here good health and long journeys down this road.

Kenneth's e-mail address is: gromitwallace31@gmail.com


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