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.
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.
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.
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.
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.
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.
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.
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.
Harry's e-mail address is: harrysub AT tpg.com.au (replace "AT" with "@")