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JW Burford and Janet live in Missouri, USA. He was 61 when he was diagnosed in March, 2007. His initial PSA was 4.62 ng/ml, his Gleason Score was 8, and he was staged T1c. His initial treatment choice was Surgery (Robotic Laparoscopic Prostatectomy) and his current treatment choice is ADT-Androgen Deprivation (Hormone) (Other). Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2021 SO THERE IS NO UPDATE.

After a regular visit to my Urologist which I have been seeing since 1998 for a Bladder cancer, he noticed I had a much higher PSA reading since my last PSA check a year before. He suggested that I have a biopsy due to the almost doubling PSA rate.

On March 19, 2007 I had my biopsy which revealed adenocarcinoma on the left side of the prostate. The biopsy Gleason Score was 4+4=8. I was then given some treatment options either surgery to remove or radioactive seed implants. I immediately had a bone scan scheduled which was negative for metastasis. I then consulted with a Da Vinci surgeon who indicated that I would probably be a good prospect for that type of surgery.

On April 24, 2007 I had the surgery, spent the night in the hospital then went home the next day and had a normal recuperative period. I suffered moderate incontinence and was impotent. I had my first post-op PSA test on June 12, 2007 which was a reading of 0.62....I then had another on June 24, 2007 with a reading of 0.59. I was then started on Lupron injections one every three months for a projected period of two years.

I also consulted a radiation oncologist who thought I needed adjuvant treatment right away. He made me an appointment with a medical oncologist who after interviewing me and looking at my records agreed that I needed IMRT (Intensity Modulated Radiation Therapy) radiation as soon as possible. My radiation doctor didn't want to start radiation until I was continent or close to being continent, so I didn't start IMRT treatments until September 13, 2007.

I had 35 daily treatments and finished on October 30, 2007. My first PSA reading just before finishing radiology treatments was 0.08. All subsequent readings to date have been <.05 or as low as the equipment would check. It has been 18 months since my surgery and I still am slightly incontinent, mostly stress, however I will have an occasional day where it seems I regress, but then again some days with none at all.

Naturally because I am taking Lupron I have maximum ED (no activity). I did take Viagra for a month or so but saw that I was wasting my money so have put that off until I finish Lupron injections, my last coming in April, 2009. Some additional items that I forgot to mention, the post operative path report...Gleason 4+5=9, positive surgical margin left side of prostate, and seminal vesicle invasion left side of prostate. Tumor involved 30% of prostate, mostly on the left side. Staging pT3b.

I feel fairly well, I do suffer some side effects of the Lupron injection, mostly hot flashes, however slight fatigue and maybe slight depression, however not enough to seek medical treatment. I feel some apprehension as what my first PSA after Lupron will be.....hoping for a lifetime of zeros!!!!

UPDATED

August 2009

I haven't had an update since my original posting on the forum. At that time I was taking Lupron every three months and had been on that regimen since June 27, 2007.

I just recently completed two years of that treatment and all my PSAs were registered at less than <.05%. I had my last shot in April of 2009 and as of today, August 10, 2009, I am still suffering from hot flashes, some fatigue and ED. I was hoping that soon some of the side effects of Lupron would be wearing thin, but not yet.

I have the important PSA test taken in October, which will be the one with no Lupron in my system for 3 months. The Doctor is going to check my testosterone also in October....he says he hopes it is low. I am still waiting for that firmness or stirring that so many of the posters on this forum speak of. I take a 100mg tab of Viagra about three times a week but so far no good.

I wish all members of the forum well, and to keep their chins up, you never know when some scientist might hit on a cure for this dreaded disease.

Best wishes,

J.W. Burford

UPDATED

July 2010

It has been almost a year since I updated (August 09). I am still doing okay, I get my PSA checked every three months, soon to move to every four months. I see my Urologist every other visit and have a Cystoscopy completed yearly.

I still have a slight of amount of incontinence and have maximum ED issues. I have just recently started taking shots to obtain erections, however have not found the correct dosage as of yet.

My PSAs have all been < .05 since I completed my radiation treatments over two and one half years ago. I have finally been able to recover from the effects of Lupron which I took for two years. The hot flashes from that lasted about seven or eight months after the discontinuance of the shot. That was basically all the side effects that I incurred other than occasional fatigue.

I continue to have an up beat attitude about my particular condition and hope that things continue to improve. Good luck and best wishes to all members of the forum....

JWB.

UPDATED

December 2011

It has been almost 5 years (April 2007) since I was diagnosed. Briefly I had Da Vinci surgery, then radiation, then Lupron therapy.

I cruised along for almost two years after my initial Lupron Therapy before my PSA started creeping up little by little. The Doctor let it rise for almost a year before telling me that I needed to initiate Lupron therapy again....My PSA in July of 2011 had risen to 0.72. He administered a one month Lupron Shot which brought the PSA down to 0.16 by the next blood test. Shortly thereafter around the early part of October it had risen again to 0.73. He then administered a three month Lupron shot on November 1 of this year and just yesterday I had another PSA test....hopefully I will see a substantial decrease again.

He will tell me when the results are in whether I will need another shot or take a holiday.

UPDATED

February 2013

Hello, it's been a while since I've updated so here is the latest of whats going on in my treatment process. Briefly to bring this up to date, I was diagnosed with PC in April of 2007, with a high gleason score of 8. I elected to have DaVinci surgery and also had radiation treatments and a two year regimen of Lupron. My PSA; after the radiation dropped to 0 and each check after that for two years showed a 0 PSA; reading. After 0 readings for about three years, my PSA; started rising and my Doctor again started a Lupron regimen. I am now on intermittent treatments, using a three month shot then watch the PSA; slowly rise for about 6 months and then get another Lupron shot. This treatment seems to work well with me at the present time. I handled the Lupron affects fairly well with the xception of the hot flashes which get pretty intense. My Doctor has prescribed Megestrel to combat the hot flashes.

UPDATED

March 2014

There really hasn't been much change in my condition since my last update around a year ago. I am still taking a Lupron shot when my PSA; rises. The Lupron will knock it down for a few months then it starts rising again. I still have some incontinence and ED. Other than that I feel fine and have never had any symptoms or problem from the cancer, just the medicines used to treat. I just received another Lupron shot about a week ago, hoping that it will still do the trick. Good luck to all and if I can help in anyway contact me.

UPDATED

April 2015

I am currently doing okay, it seems that my PSA; will rise up over 1.0 and then my Doctor will administer a Lupron injection. This drops the PSA; to near .50 and it will stay in that range for 6 to 8 months before again rising to over 1.0 again. This has been my routine for the last few years and I hope that this continues to keep things in check. It has been about 8 years since my first diagnosis which resulted in removal of the prostate (robotic) and then 36 zaps of radiation. Since then I was fine for about three years until the PSA; began rising slowly. I was moderately incontinent and had to use pads but this past December I elected to have an artificial Sphincter placed on my bladder and this has almost returned me to normal.

UPDATED

May 2016

I have been coasting along the last couple of years with a rising PSA usually up to 3. something before my doctor orders another Lupron shot to knock it down. The shot is coming at about 8 months out from the previous shot so my PSA goes from 0.5 to around 3. something about every 8 months. I have inquired of him how I am doing and he tells me that as long as the androgen deprivation works that I will continue to do fine. He tells me that a urologist at Mayo clinic is experimenting with a new type scanner that detects distant metastasis and sends you to an oncologist in Ames, Iowa for chemo that knocks this metastasis before it has time to spread further. I have a friend who is going to this Doctor at Mayo and has had the chemo treatments and has experienced good results. My Doctor tells me that until this very expensive scanner is made more available that he is doing all he can do at the present time.

UPDATED

July 2017

I really have nothing to add since my last writing from 2016. I am still receiving Lupron therapy about every 8 months as my PSA will rise into the 4 to 5 range and then drop into the .06 to .09 range after the Lupron Shot. I have few side effects from this treatment, maybe slight hot flashes, mostly at night. I am still slightly incontinent and wear a small pad which lasts most of the day. I am still not able to perform sexually which I have now realized is probably a permanent situation. I had tried various medicines for that issue with no results. I had also tried injections to no avail. So I guess to sum up my condition I am just drifting along hoping that the Lupron continues to work on me. I have survived 10 years and feel just as good today as I did when I was told that I had prostate cancer.

UPDATED

July 2018

I last updated in July 2017 so I guess I should bring all interested persons up to date on my story.

I was doing well until March of this year when I suffered a severe pain in my lower right back. I went to my regular physician and he examined me and did an x-ray and then an MRI. He observed a small tumor close to my L-2 vertabrae and referred me to a neurosurgeon. This doctor examined me and said that the tumor wasn't pressing on the spine and he didn't think surgery was advised. He referred me to a medical oncologist who after numerous scans...ct,mri,pet,bone,etc determined that I needed to have a biopsy on the tumor and also the close proximity vertabrae. The first biopsy was no metastatic cancer present.....however he wasn't satisfied since that was only one needle. He requested me do another with three needles and that one confirmed adenocarcinoma with in the bone. My oncologist then placed me on a regimen of a Lupron shot every three months, plus Zytiga/prednisone daily. I have been on this regimen for about three months and all my cancer labs are within norms and the PSA has dropped from 5.4 to 0.77. I still feel fine, the only detriment I have is severe hot flashes which occur about every 30 minutes and last a couple of minutes. I am still seeing my urologist for Lupron shots and a yearly cysto.

I hope all on this forum are doing as well as possible, keep your chin up, be positive, sometime somewhere there will be a cure for this dreaded disease.

Sincerely,
JW Burford

UPDATED

September 2019

Well another year has passed since I last posted on this site and other than a few changes in my medications nothing has really changed. I am no longer taking Zytiga as it apparently quit working to reduce my PSA and I am now taking Xtandi which seems to be working very well with few side effects. My cancer has metastasized to my vertebrae which causes me pain but I am using a Fentanyl patch to control that to a tolerable level. I was taking hydrocodone but had all kinds of problems, with that so I only use that as a last resort for pain. I am still taking Lupron shot every 3 months plus the above medicine regimen.

JW's e-mail address is: jwburford187 AT gmail.com (replace "AT" with "@")

NOTE: JW has not updated his story for more than 15 months, so you may not receive any response from him.


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