Patients Experiences, stories of overcoming prostate cancer

Home TPSA Story Trustees & Helpers Helplines Contact Us Forthcoming Events Disclaimer

Newsletters Become a Member Become a Volunteer Make a Donation

Symptoms Diagnostic Test Compare Treatments Self Help Options TPSA Buddies Patients Experiences Internet Resources

About

Info

News

Donate

Meetings

TPSA

Torbay Prostate

Support Association

Serving men of all ages, and their partners, through a program of support before, during and after diagnosis.

Peter Loader's Marathon Fight

The Nineties were ten years of blissful ignorance for me. I thought the hesitation before passing water, the stop and start and the weak flow were just that I was getting older, even though I was only in my late forties.

We all know an 8 year old boy can pee a considerable distance and a 90 year old often gets his shoes wet! I was somewhere in between, but much nearer the 90 year old than I cared to admit. And that back ache was surely just the result of heavy lifting and handling cattle for all those years.

On June 27th 2000, I had a x-ray on my back which showed an enlarged prostate and cancer hotspots on my spine. My PSA was 55, Gleason 3 + 4 and a bone scan showed multiple metastases all over my skeleton. Under pressure from me my urologist told me that, as I was only 53, it was not all bad news. I could have up to five years survival but to only expect 2.5 good years.

Well, that was over 3 years ago and to celebrate passing the average prognosis, my son and I ran The London Marathon in 4hrs 20 mins (raising £4,400 for The Prostate Cancer Charity) and I recently completed the 84 mile Hadrian's Wall path - walking this time. I still run about 4 miles, 3 times a week followed by half an hour of light weights to keep my bones as healthy as possible.

So what have I done in the last three years. In some respects I was 'lucky'. The cancer had spread so I didn't have to make the mind-blowing decision of what to do with my prostate. I still have it, untouched, except for a biopsy. I took the advice of a veteran prostate cancer fighter, Roy Nixon, who said, "Engage your cancer, read all your head can carry and take charge of you own treatment".

I became 'sort of' computer literate so I now read thousands of emails of diagnosed men talking to each other and discussing every aspect of the disease.

I sometimes join in asking questions and can now help others who are newly diagnosed just as others helped me and still do. I can even ask advice on my case from top oncologists in the States who specialise in Prostate Cancer, all for free. Does anyone get to see a prostate specialist in the NHS ?

I met Sylvia's husband, Michael, on one list who helped me a great deal and told me about the Torbay Prostate Cancer Support Association which he had started. Now, a few years later, other groups in the South West are only in their infancy.

I was offered just one drug, Zoladex, but managed to argue for four, having learnt of their value from the Internet lists. The additions were Casodex, Proscar and Fosamax with calcium. I visited Bristol Cancer Help Centre for a two day course which convinced me that no cancer was necessarily terminal and that an holistic approach was essential to have some kind of chance. So, taking Bristol's advice, I have greatly changed my diet, take several supplements and alternative treatments and as important as any drugs, I believe that mind over body is an incredible weapon.

After 18 months on hormone treatment and 15 months undetectable PSA I went onto

IHT (Intermittent Hormone Therapy) and remarkably for someone with multiple

metastases, I am still off hormones, accept for Proscar over 3 years after diagnosis. A bone scan last year amazingly showed no tumours on my scan (they had all become dormant). My PSA is rising again now and in a few months I may have to return to hormones but have had a great 20 month run on no conventional drugs other than Proscar. The break from hormones has been good with testosterone levels back to normal.

If or when I become hormone refractory, I have no idea how I will cope with

chemotherapy and possible severe bone pain but for the time being I have got the

word 'terminal' out of my head and replaced it with ‘advanced' prostate cancer.

The longer men in my situation can survive the greater the chance new treatments will come on stream but we do need the co-operation of doctors to be a little more adventurous in the administration of these drugs. We haven't the luxury of time.

Unless I have been the lucky one, I believe attacking the cancer from many angles has prolonged survival a great deal. There is so much to learn on so many aspects of prostate cancer that it can be daunting. Even GPs, general urologists and oncologists will admit to a limited knowledge of prostate cancer and it was very refreshing last month when my urologist (in Somerset) actually asked me to supply him with some particular details from my internet lists. After changing my GP, I now feel we are working as a team with respect all round.

I believe strongly that progress with prostate cancer will only be made from

patient pressure. Women have shown us the way with breast cancer resources many times superior to prostate and their death rate is falling. Awareness is pitiful and needs addressing urgently for all men over 45. We know what the symptoms are, so it has to be our responsibility to pass this knowledge onto the next generation. That goes for politicians, physicians and patients. As The Prostate Cancer Charity say, "For the sake of our Sons and Grandsons".

There is a huge amount that bewilders me still and my experience is of advanced

prostate cancer but if anyone would like to exchange notes or ideas then please feel free to get in contact. Tel. 01460 62935 or email peter@loader66.fsnet.co.uk

Some subjects for discussion : side effects of hormone treatment, why Casodex, why Proscar, why a bisphosphonate (Fosamax maybe Zometa), which diet, red meat, dairy, salt, sugar, supplements, anti-oxidants, advantages of a visit to Bristol Cancer Help Centre, stress reduced life, relaxation, visualisation, alternative treatments, good internet lists and sources of information etc.etc.

Peter Loader

Don’s Story

A MILD DOSE OF CANCER - WHAT A NUISANCE!

In 1992 at the age of 68 I had a slight health difficulty, having to get up two or three times in the night to pass water. I was checked very carefully, the PSA figure was 4 and X-rays showed nothing except a slight prostate enlargement. No medical treatment was suggested. In 2001 I was getting up in the night seven or eight times and there was considerable discomfort and delay in passing water. My GP told me that it was normal at my age and when I asked if it would be possible to have a PSA test, he treated me with scorn. I changed my GP. A month later I met my new GP and told him of my symptoms. Without my needing to ask him, he immediately arranged for a PSA test to be done. It gave a value of 18. He sent me to a urologist who examined me and a week later carried out a biopsy at Torbay Hospital. It was negative but this very caring consultant insisted on another biopsy to be certain. The second biopsy was positive for prostate cancer. My urologist immediately put me on Flutamide tablets. Within a few days I was in Torbay Oncology Department and undergoing a dizzying series of tests and scans. Later I was on Zoladex injections and the Flutamide was discontinued. Then followed six and a half weeks of radiotherapy ending at the end of 2001. Since then I have been under three monthly observations with three monthly Zoladex injections. The PSA figure has been 0.1 for some time. I now get up in the night two or three times and pass water faster and with a much larger stream than before, with no delay or discomfort.

SPONSORED SWIM!

The effects of the medical treatment have been to reduce my stamina a little. I know this as I am a swimmer who has an exact idea of his speed, having during the last ten years beaten twenty-four British age-grouped records, four of which were Euro records as well. Several of these have now been beaten again, but this is what records are for, isn’t it? Last year I competed in the BT Swim Marathon of 5000 metres. Proceeds of the BT event, which attracted 45,000 swimmers in Britain, went to cancer charities; the competition motto was “Swim Against Cancer”. I did not realise that I was doing just this until three months after the competition and just before the presentation, when my trouble was diagnosed. I was lucky in winning a prize and at the presentation (in the House of Commons!) I met leaders of cancer charity organisations. The care I was receiving during my treatment made me determined to carry out a sponsored swim in aid of cancer charities and I decided to share proceeds between Dawlish and District Cancer Research Campaign, Torbay Prostate Support Association and The Prostate Cancer Charity. The swim I chose was another 5000 metre marathon, but so as not to make it too easy it, it would be a medley, the four quarters of the swim being on butterfly, backstroke and breaststroke and crawl respectively. The Guinness Book for Records has no note of this ever having been done before. I did it on 14 August 2002, it was a success, I finished in two and a quarter hours, still full of energy and gained nearly £800 for the Torbay Prostate Support Association.

LIVING LIFE TO THE FULL!

At 79 years I am now approaching middle age and I am optimistic that I will enjoy years more of very energetic swimming and of other interest such as reading and music, thanks to treatment which was not just prompt and competent but was carried out in a nice, kindly way as well.

At the moment, as an inevitable result of the treatment, my swimming speeds are 10% slower than they were a year ago, but I still feel good in the water and enjoy my five or six swims a week. Most of the 10% loss of speed should eventually come back.

The treatment can give side effects. In my case there are only two. One is a lack of sex drive caused by the Zoladex hormone treatment, though this matters little to an old bachelor like myself. Also at the end of the radiotherapy my bottom hurt during daily bowel relief.

I believe that I have been lucky in being diagnosed and treated early and not just with great competence but with a kindly attitude as well. With the care I have received, I do not worry about this mild dose of cancer, but feel that it is just a nuisance. Life is still brilliant! To all men over 50 or so, I say have prostate tests as a routine. This is particularly true if you have to get up during the night when it should not be necessary. Drink plenty of water during the day, but not too much just before going to bed. If in doubt about your condition ask your GP for advice, and if you are still worried contact the Prostate Cancer Charity, Telephone No. 020 82227622 or TPSA.

Don Leader

We are very grateful to Don for this remarkable achievement. Don is now eighty and has recently broken new swimming records for his age group and has done another charity swim! Anyone who is interested in swimming to keep fit and to fight off those hormone therapy blues are more than welcome to join Don.

You can contact him on: 01626 867073