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James Edge and Pamela live in New Hampshire, USA. He was 61 when he was diagnosed in May, 2006. His initial PSA was 18.90 ng/ml, his Gleason Score was 7a, and he was staged T1c. His choice of treatment was Surgery (Retropubic Prostatectomy). Here is his story.

May 2006.

I had my normal yearly check up as I had been doing since I was 50 years old, I had become very blasť about the results over the past 10 years as my PSA had never changed from 2.4. This time however it came back at 12.5. I was referred to a urologist in Orlando who retested me, that came back at 15.3. A biopsy was performed and when the results came back from the lab, it seemed that not enough prostatic tissue had been removed to determine a diagnosis!!

September 2006.

This presented a problem because my wife and I were about to move across country to live in Arizona, so I took the slides and report with me and then had to start the process over again with a new urologist and another biopsy after he put me on Cipro for 30 days to make sure that it was not an infection. It was not, but by now my PSA was 18.9, so another biopsy was done and PC was diagnosed.

My urologist then explained the various treatment choices that were available to me at that time. I decided to have the RP and debulk the tumor, this would then give me a more accurate look at whether the cancer had indeed left the Prostate itself.

November 2006.

After the surgery was performed, there was some extracapsular extension on one side of the prostate, but the nodes were negative for PC.

The Gleason score was confirmed at 3+4=7 and the staging was T3c NO. After the catheter was removed I had no incontinence whatsoever, so that was good news. The follow up PSA test was not however, that came back at 1.2!!

January 2007

I started 39 sessions of IMRT (Intensity Modulated Radiation Therapy) radiation to the nodes and the prostate bed, as well as the pelvic area to hopefully kill of any remaining cancers that were left after surgery.

The radiation went well, no real side effects really, my PSA after completing the treatment did get down to 0.16, not undetectable but a fairly good decline. That was my nadir after radiation.

May 2008

By now my PSA had climbed to 0.52. I was recommended to see a wonderful Prostate Cancer specialist in Los Angeles called Dr Tanya Dorff, after meeting with her, it was decided to have a CT Scan along with a Bone Scan to make sure no distant metastases were evident. Both scans were clear but my PSA continued to go up and reached 0.64.

September 2008

I then started with ADT treatment, my Meds were Lupron every 84 days, with 150 mg of Casodex daily with 0.5 mg of Avodart.

Within one month of my first Lupron injection my PSA had gone down to 0.03 and my testosterone was 12, Dr Dorff was extremely encouraged, every monthly blood test taken from that point showed the same 0.03 with the Testosterone never showing any sign of going up.

June 2009

Dr Dorff has taken me off the ADT therapy, and will now monitor my PSA tests every three months, the next one being in August.

I will update when these results become available.

UPDATED

September 2009

I have just had my first PSA test since coming off my ADT treatment.

PSA is still at 0.03 Testosterone is recovering.

Great news!!!!

UPDATED

November 2009

Latest quarterly PSA is still holding at 0.03 since stopping ADT 6 months ago.

UPDATED

June 2010

Most recent PSA test came back at 0.03, has held steady since May 2008. My testosterone is now at 480.

Just back from seeing my oncologist in LA, she is delighted at my continuing undetectable status, wants to see me in a year.

UPDATED

January 2011

After 18 months on a ADT holiday and undetectable my PSA has risen to 0.4. Last test was November 2010. My doc wants to wait for the next one in February to see the velocity and what the doubling rate is, assuming the test in November was not an error.

I guess it was always likely to begin its rise once again, but one always hopes and prays that it would take a very long time to do so. I guess 18 months holiday from ADT was good though.

Dr Dorff has said that if the PSA does continue to rise then its back on ADT once again.

I will update after my next test in February.

UPDATED

March 2011

My follow up PSA test came in a 0.8 in February up from 0.4 in November. So not a good result really, doubling every three months.

Back to see Dr Tanya Dorff at the Norris Cancer Center at USC in Los Angeles, had two scans done, one PET CT scan, followed the next day by a PET bone scan. After discussing my latest PSA, Dr Dorff and I agreed to begin a second round of ADT, Lupron and 150 mg Casodex, with daily 0.5mg Avodart.

After arriving back in Phoenix I received good news on both scans, they were clean although there is an area in my pelvic area that they are confident isn't cancer but it has to be ruled out. So all in all very good news, just got to have an ultrasound needle biopsy to that swelling to see exactly what it is.

My last round of ADT was very successful, it gave me almost two years off treatment, hopefully the same result will follow this time.

UPDATED

May 2011

This is my second round of Hormone Therapy after having 18 months in an off treatment phase.

I had my first results back after six weeks and my PSA has returned to undetectable 0.03, my testosterone went from 550 to 12, so very good news as the ADT is still proving to be effective.

UPDATED

November 2011

Just finished my second round of ADT, PSA maintained at 0.03 during the treatment, testosterone at 12.

Now beginning what I hope will be a long off treatment phase.

My next 3 month blood test will be in Feb 2012 :)

UPDATED

July 2012

Nothing really to report, I am still in an off-phase from ADT3 and most recent PSA in May 2012 was 0.03. Testosterone is recovering from 12 to now about 300.

Good news really!!

UPDATED

August 2013

Since finishing my second round of triple hormone blockade about a year or so ago my PSA has once again started to go up. The last three readings were 0.35..0.75...1.08, this gives me a doubling of around 3.7 months, not good!!!

Before going back on ADT for the third time, my Onc in LAX Dr Tanya Dorff wants me to have a scan done. I have decided to pay out the cash for this new C11-Carbon Acetate scan which is producing amazing results in detecting recurrent cancer at very low levels of PSA, their trial is showing a success rate at 89% at a PSA of level 0.4 and above.

The hope for me is that this scan which is scheduled for Aug 6th will show where these micro metastatic cancer cells are located, maybe in a node or in the prostate bed. This could enable me to have some form of targeted radiation to slow down the rate of my PSA score.

I will update this story after the results of the scan are known.

UPDATED

September 2014

Since my last update in August 2013 and because of a rising PSA, I once again started a whole new round of triple hormone therapy, this would be my third cycle of ADT since 2008? The difference this time around was that I invested some money and had this new C11 Carbon Acetate scan that conveniently was being tested in my home town here in Phoenix.

The reason I had this test was because it was proving to detect PSA at very low levels, something that conventional imaging had failed to detect. The test and result all happened within a few hours and Praise God finally the seemingly hard to find micro cancer cells were found in one lymph node at the back of the lower abdomen, everywhere else looked great.

Treatment while continuing ADT was to have targeted radiation to that lymph node, I had 15 treatments of radiation in total, so to bring this up to date as of today my hormone therapy worked for the third time, PSA stayed undetectable at <0.03 until I finished treatment on July 23rd 2014. Then had my labs done on August 3rd, PSA still at <0.03, next test in November.

As to whether the radiation has been successful in eradicating those active cells in that lymph node, it's a waiting game now. The best outcome would be that my remission would last much longer than it had previously, and then even if and when the PSA starts to rise once more, my doubling time would be much longer. I will update this story when anything changes.

UPDATED

October 2015

PSA is rising once again after being off ADT for about a year from 0.03 now at 0.8 the last three monthly test results were 0.6...0.7....0.8. I had another Carbon Acetate scan done at Phoenix Molecular Imaging and Praise God no signs of any metastases anywhere. There were three very tiny lymph nodes that were slightly enlarged but not enough to warrant any treatment as yet.

Tomorrow the 20th of October I go back to Los Angeles to see my Oncologist and see what next steps might be. If I had to hazard a guess she will want to wait to see if PSA continues its upward trend and when it reaches a higher level 1.5...2.0 I guess I will begin another round of ADT. This time she may add Zytiga in the mix rather than Casodex, we shall see. Other than that I feel great and have survived now for over 9 years and looking forward to many more :)

UPDATED

November 2016

Its been quite awhile since my last update, for that I apologize. I am still having intermittent ADT treatment which continues to work after nearly 10 years. The only change is that my oncologist Dr Tanya Dorff at USC in Los Angeles has managed to get me approved for Zytiga instead of Casodex, even though the Casodex was still working. The idea behind this move was that as Zytiga is a much better drug than Casodex she thinks that I will get a much longer sustained remission once I come off the treatment in March than I have ever had using Casodex.

Also I have had another Carbon Acetate scan to see if there was any evidence of metastasis, Praise God there was no sign of any cancer that could be seen using this very effective scan. So now I am close to completing 11 years since I was first diagnosed, I have been truly blessed. It does help having an oncologist who specializes in PC and is always at the cutting edge of what is going on in treating this disease. Many thanks and God Bless to you all

UPDATED

December 2017

It's been about a year since my last update, at a time when I was in the middle of another round of ADT which this time included Zytiga instead of Casodex. As before this treatment is still working as this cancer is still hormone sensitive after a long time. I came off treatment in January 2017 and as of today my PSA is still undetectable.

During 2017 my wife and I left Arizona and moved back east to Rochester, New Hampshire. This of course meant I would have to say goodbye to my wonderful onc Dr Tanya Dorff at the Norris Cancer Center at USC in Los Angeles. She kindly recommended me to the Dana Faber Cancer Institute in Boston where I am now under the care of Dr Mary-Ellen Taplin, so far so good, and as many already know this is one of the best cancer centers in the world. so I am very blessed.

Merry Christmas to all of you

James

James's e-mail address is: james.chelseablue AT gmail.com (replace "AT" with "@")


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