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Harry S lives in Western Australia. He was 66 when he was diagnosed in August, 2015. His initial PSA was 5.00 ng/ml, his Gleason Score was 9, and he was staged T2c. His initial treatment choice was Other (Specify:) and his current treatment choice is Brachytherapy (High Dosage with EB and ADT). Here is his story.

I was diagnosed with a lipoma (fatty tumour) in the spine at age 45. I have had trouble with waterworks and digestion all my life as a result of the lipoma causing a tethered spinal cord which causes poor nerve signals to the lower part of the body. I also have spina bifida occulta which may have added to the effects of the lipoma. As a result since 1994 (age 45) I have been self catheterising. This meant I was unsuitable for radical prostatectomy. I am now after a lot of reading including a lot on YANA hoping ADT+EBRT+brachytherapy will give me the best chance of survival. I talked to the oncologist on Fri 29/1/16 he agreed the brachytherapy gave a 12% better chance. Coincidentally that same afternoon only 2 hours after, I met a Gleason 10 man at our gym and had a long talk with him. He had been through the same procedure already and was at PSA 0 after 12 months of treatment. He also had heard of the 12% figure in the trial just completed. Apparently the brachytherapy uses stainless steel needles to insert then withdraw the radiation source - no beads of radiation are left in the body. I have not found out what isotope they will use yet. I have been on Lupron and Androcur continuously for over 3 months. I have just had my second 3 monthly Lupron injection a week ago. My bloodwork indicated a rise in one liver test but my GP (local doctor) and oncologist did not worry about me continuing the Androcur which can cause liver problems. I wanted to stay on the Androcur as it blocks any testosterone (or nasty dihydrotestosterone which is not mentioned much or tested for) from being accessed by the prostate cancer cells. My testosterone dropped from over 20 to 0.5 on the Lupron. My oncologist said 0.5 testosterone was at the high end of his acceptable range. My PSA is at 0.27. My brother has had prostate cancer and metastases for 3 years and is on Zoladex at present. If a brother has prostate cancer that means you are more at risk of having it at some time. That helped me be more alert but it was still 13 months between the final high PSA reading and the one before. I also regret not having a prostate MRI when I found out my brother's diagnosis.

UPDATED

February 2016

Have had gold markers inserted in prostate for radiation targeting today. Radiation commences in March. Tomorrow urologist is going to dilate urethral tract as there are strictures in it from my self catheterizing. This was discovered in Oct 15 by another urologist who was checking on my urethral sphincters operation with a view to having a prostatectomy. This process is called Urodynamics here. I want the urethral tract to be in the best condition before it gets traumatized by the radiation next month.

UPDATED

April 2016

Testosterone is down to 0.4 so I am staying on Androcur but only 50 mg morning and night owing to liver damage risk. Soon to have 3rd 3 monthly Lucrin injection. So far 17 of 28 radiation sessions done. Changing to other machines after today. My brother informed me he is Gleason 8 and his PSA is <.02 after 3 years post diagnosis. I am scheduled for brachytherapy next month.

UPDATED

August 2016

After high dose radiation to the prostate area with 15 needles containing a removable radiation source in three sessions over 2 days and this was after 29 daily sessions of external radiation therapy my PSA is now at 0.03 ng/ml. I am still on Lucrin injections 3 monthly. I am a week away from 1 year anniversary of diagnosis of prostate cancer.

UPDATED

February 2017

Saw an oncologist recently for second opinion. She said stop 50 mg. Androcur. I am going to continue as any testosterone in my opinion must be stopped from getting to any cancer cell and feeding it. She also said total of 2 years on ADT would be maximum at this stage for my case. My normal therapist then confirmed yes 2 years was their treatment for me. That means this October (I will have been on it for 2 years then) I will be stopping Lucrin - looking forward to it. My brother had metastases has been on Zoladex for 4 years and as of October last had a PSA of 0 he is Gleason 8. I am happy for him.

UPDATED

August 2017

Testosterone is now 0.2 and had last Lucrin injection in July and was told effects will last at least 6 months. I was also told lucrin suppresses production of PSA by good cells in the prostate. Another GP told me he expects radiation should have killed the prostate he does not expect PSA to be produced by it even after Lucrin is finished. I stopped taking any androcur as I was worried about its side effects which I have not experienced as yet. It was taken as a blocker to stop the small amount of testosterone feeding any cancer cells that may be left in my system. The oncologists said it was not necessary to take it so long but I did anyway. They did not give me a good reason why I should not take it so long. My brother who has metastatic prostate cancer now for four years is even thinking of taking some chemotherapy as a prophylactic. I said I thought it was a good idea and that he should consult an oncologist.

UPDATED

August 2017

Spoke to my brother his story is above included in mine. He is Gleason 8 been on Zoladex and Casodex for 4 years. His PSA is still 0. He has chosen to do a course of chemotherapy as he already had a spread of his cancer to bone at time of his diagnosis. He is now on taxotere.

UPDATED

February 2018

I am happy PSA is low (less than .01) at the end of Jan 18. ADT stopped in July so 5 months since last 3 monthly injection. Testosterone is slowly coming back now 1.5, it was 25 before ADT. I am losing wt, 8 kg in 6 weeks so far. Still 5kg overweight. My Radiation doctor predicts PSA may rise to 2. His registrar predicted in 4 months PSA will be 0.5 so we will see if this happens. I have to have a ultrasound yearly as I have had to catheterise for the last 24 years because of the fatty tumour in my spine which I have had since birth. The ultrasound mainly to check kidneys showed because of radiation and ADT killing cancer cells my prostate had shrunk to half its original volume. Doctors predict my testosterone will rise to 5 in the next 4 months. My brother had 18 weeks of taxotere treatment and lost his hair in the process but it is now coming back. He is Gleason 8 and had a metastasis in a hip bone.

UPDATED

June 2018

Just got testosterone update gone from 1.5 to 15. I expect it to get to 25 when my system stabilizes after treatment. My doctor (General Practitioner) says my PSA nadir i.e. lowest value will be taken as 0.

UPDATED

November 2018

It is now 12 months since I completed 2 years of ADT. Testosterone is nearly back to pre-treatment levels. Median PSA for a normal 70 Year old male with a healthy prostate is about 1.2. I hope my PSA does not get much higher. It has gone from 0.05 to 0.49 in the last 5 months.

UPDATED

April 2019

Doctor said do PSA in June 19 but I couldn't wait so did it in Mar. Happy as PSA had dropped a little in the past 3 months from 0.49 to 0.45. Next appointment is in June. You can buy a PSA test from pathologists at around $50 so might buy one in June - see what doctor says.

UPDATED

June 2019

Happy that PSA has gone from 0.49,0.45 to 0.27 in the last 3 three monthly tests. Radiation Oncology doctor says come back in 6 months. Trying to get to gym more often.

UPDATED

September 2019

My brother who is Gleason 8 for the last 6 years has just had bleeding from bladder. He goes for cystoscopy next month. He had external radiation early on.

UPDATED

January 2020

Latest PSA at end of November was .26 and oncologist who did the original high dose radiation and external radiation beam treatments gave me impression he is highly impressed by Cyberknife treament and that might be better than treatment I had. My PSA stable now for over 6 months. Doctor said next reading in 6 months but I will do it in 3 months time.

UPDATED

July 2020

Small drop in PSA 0.26 - 0.21 thank God. My urethra is toughening up so not so many bleeding incidences during self catheterising which I try and do every 4 hours to reduce the risk of UTI (urinary tract infection).

UPDATED

January 2021

Happy that PSA has dropped from 0.21 to 0.20 in the last 6 months. Looking good thanks to the surgeon Dr.Goodwin and the radiation oncologist professor Bydder.

UPDATED

September 2021

Psa measured in August was 0.27

Started using viagra, cialis and levitra when required although doctor may have recommended cialis daily for prophylactic reasons to help eliminate erectile dysfunction.

UPDATED

February 2022

Lowest reading of Psa for 2 years at 0.20.Using large 18 catheter maybe damaging sphincters causing slight incontinence.

UPDATED

October 2022

Concerned that PSA has double since last reading from 0.2 to 0.4. Will definitely be discussed with oncologist (radiation) in November. I suspect will do another PSA test in 3 months.

UPDATED

February 2023

Concerned that PSA has double since last reading from 0.2 to 0.4. Will definitely be discussed with oncologist (radiation) in November. I suspect will do another PSA test in 3 months.

UPDATED

February 2023

After my PSA doubled from 0.2 to 0.4 I decided to do another test more quickly than usual. The main reason for doing this was That I had a urinary tract infection at the time of the last reading. My local doctor the infection may have been the reason for the higher PSA reading. The new latest PSA reading is 0.15. A pleasing result.

UPDATED

November 2023

Happy that PSA has been dropping after finishing treatment in 2016. Since median PSA for a 74 year old is around 1 my current reading of .11 is low.

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


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