YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

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Peter Jackson and Nancy live in England. Peter was 65 when he was diagnosed on Feb 2 2004. His initial PSA was 22 ng/ml and his Gleason Score was 4+4 = 8. He was staged T2b, possibly T3. He chose EBRT - External Beam Radiation. Here is his story:

In January 2004 was having problems with ED [erectile dysfunction]. I had type 2 diabetes since 1998. I went to my doctor and he did blood work. He then called me in to surgery and said your PSA is 22 ng/ml and I need to check out your prostate with a DRE. He was sure there and then and told me I had Prostate Cancer.

I was seen by urologist within 10 days and he confirmed diagnosis. I was staged T2b but the urologist stated posibly T3 but N0 and M0. I had a biopsy done and my Gleason Score was 4+4 8. After biopsy I complained of dull ache in pelvic area behind pubic bone, was put on antibiotics for one month.

From this I was called in to see urologist and radiologist together. Urologist stated he was reluctant to do RP (surgery) because he may not get it all. Radiologist stated she was pretty sure she could get it all by bracketing the site. By this time I had done a considerable amount of reading and agreed with the radiologist. I complained again at this time to them that ever since the biopsy I had a dull ache behind the pubic bone in the pelvic area that reoccured. They put me on antibiotics again.

A date was set for radiation treatment, early July - five days per week for four weeks. Was told I would be on Zoladex for at least three years. I was put on one sort of tabs for one week to control flare and given a Zoladex jab. Radiation was started about a month later and after one week the dull ache in my pelvic area subsided. Radiation concluded and to date have slight problems with faecal incontinence but no urinary incontinence but am completely impotent.

Two month after radiation was completed, October 2004, the dull ache in pelvic are started agian. Again I was given one months anibiotics. This cured it for a while but it still to this day it bothers me to some degree all the time. I have hot flushes, which I can handle, no fatigue, loss of body hair, but otherwise feel OK. Have resigned myself to the loss of any sex drive and the inability to perform. I would be a nice to have but not a need to have. All my energy goes elsewhere - boy have I got a wonderful garden. Quality of life is good considering.

 

UPDATED

December 2006

 

I would like to say at almost three years after diagnoses I am about to stop hormone therapy. I will have one more injection in January and that will be the final one. I will then be watching my PSA like a hawk. A word about the ache that I complained about earlier. I was given advice from a fellow sufferer to exercise the pelvic muscles. within a very short time, days, the ache had subsided considerably. I persisted with the exercises and have had no further trouble.

PSA has been steady at 0.04 ng/ml now for about two years. Am looking forward to the gold star. Be positive.

 

UPDATED

January 2008

 

I had my last Zoladex injection in January of 2007 after 3 years on ADT. After 3 months my PSA was still down at 0.04. In July my PSA had risen to 0.1, by September it was 0.34 and in December it was 0.55. In January it was 0.67 following a visit to a prostate cancer specialist in LA who recommended tests ever month.

While in LA I had a CT and bone scan done and both were negative. All blood tests done indicate that I have no Mets. The DRE examination indicated that the initial radiation treatment had completely fried the prostate. It is obvious if cancer still persists it is below the detection size of the scans. If the PSA persists in this continual rise I am told I should go back to ADT with other drugs. This will make the treatment IADT3, (intermittent androgen deprivation therapy with 3 other drugs to control DHT).

While in LA I was also advised to take per day, 300mg of CoQ10, 30mg Lycopene, 200mcg Selenium, 200IU Natural Vit E, 100mcg B12, 2000IU D3 and 1000mg of Calcium Citrate. Because of a reflux problem I was not allowed to take Actolel to prevent osteoporosis. It should also be noted that I take medication for Diabetes and reflux and because of the quantity of pills I now rattle when I walk:) S

Since stopping ADT last January I still have little or no libido and erections are still impossible. But otherwise I seem to be a healthy 68 year old with little loss in stamina and capable of a "normal" life. Am happy with my past decisions because the alternative, to do nothing, would mean by now I would be in deep trouble and would not have the quality of life I now enjoy.

 

UPDATED

February 2008

 

Have been troubled by a rising PSA from <0.04 when I stopped ADT April 2007 to 0.67 in January 2008. I was placed on a strict diet by an Oncologist in LA USA and given a regime of supplements. Latest PSA reading is 0.56. the trend is now down. I am hoping that this last test is not a "flier" and that the downward trend continues. My diabetes has responded well too and has needed a further drop in medication. It needed a change in medication when I came off of ADT.

 

UPDATED

October 2008

 

My final PSA before deciding on further treatment was 1.07 in July 2008. I visited a medical oncologist in LA California and in St. George Utah and was advised by both to go onto intermittent androgen deprivation therapy plus. That is IADT3. I was also advised to take supplements, I will give you a list of these if you email me.

The therapy consists of Lupron as an injection every 4 months and with Casodex and Avodart daily. So I'm back to the hot flashes, not too bad and easily tolerated. Other side effects are a lowing of libido and again loss of bodily hair and just a bit of lack of get up and go.

As I write this in early October 2008 my last PSA was down to 0.16 and other blood tests are normal. Will now wait to see when my PSA gets down to undetectable hold it there for over 6 months and then stop the Lupron and Casodex but continue with the Avodart.

One problem you all should be aware of is the price of the daily drugs if you do not have an ongoing prescription insurance, About $1500 per three months. I have hit the gap in my insurance and if the cancer does not get me bankruptcy will. Am trying Overseas supplies at $250 but the quality can be questionable so I am told. However my income is such that I have no alternative.

 

UPDATED

September 2009

 

Because of a rising PSA - my PSA rose from 0.04 to 1.07 and was advised to start IADT when it rose to 1 - I started IADT3 (lupron + casodex + avodart) in August of 2008. Within 3 months my PSA went down to 0.06 and has stayed there for 9 months.

The side effects were slight sweats and swelling and pain of the breasts, I have also been suffering from fatigue but am able to work through it most of the time but with muscle pain after the workout. The pain within the nipples has been easily controlled with Femara used when needed.

I generally feel good and am able to carry out a normal life style. There has been complete ED throughout my treatment and I have made no effort to seek improvement with this side effect. I was having problems with this before diagnoses and was told it would not improve. During this phase of treatment I have had trouble with control of my type 2 diabetes necessitating increased medication to affect adequate control.

Peter's e-mail address is: peterjcks39@operamail.com