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  DIAMOND  
This is his Country or State Flag

Tony Sawyer lives in England. He was 52 when he was diagnosed in February, 2004. His initial PSA was 5.70 ng/ml, his Gleason Score was 9, and he was staged T2b. His initial treatment choice was Surgery (Retropubic Prostatectomy) and his current treatment choice is Chemotherapy (Taxotere). Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.

I was diagnosed in early 2004, and agreed in June that year to have surgery, as "at my age it gave the best opportunity to clear the cancer completely". At the same time, my father (26 years older, and suffering from what doctors had been saying for 18 months was old age) also was diagnosed with a Gleeson 9 cancer (PSA 4.4). It was suggested in his case to commence Zoladex treatment, and this quickly brought the PSA down to about 4-5 over about 6 months.

My operation occurred in August, and by October, I was back at work fully. Because the prostate was found to be "riddled" with cancer, I commenced a course of Casodex, and in April 05 also had 2.5 months radiotherapy treatment. By the close of 2005, the PSA was less than 0.1 and the Casodex was stopped.

At this stage, I was partially incontinent (the surgery had affected the bladder sphincter) as well as impotent, no sex desire at all, and also by now had "man boobs" - from the Casodex. I suggested to the surgeon, that a full sex change might have been easier!

In Feb 07, the cancer came back, shown by an elevated PSA to 0.31, and I commenced a course of Zoladex. To minimise the risk of the cancer spreading to my skeleton at a later stage, I was also put on 6 monthly infusions of Zometa (2 sessions of which left me very sick, unable to walk for a couple of days and with headache - the lesson is to drink lots of fluids after the infusion, for about 48 hours, to flush the excess out of your system).

So here I am coming up to 58, incontinence greatly increased (looking to see if surgery needed), impotent, and suffering from a depression over the last 4-5 months which I suspect is a mix of my father dying last year (not of prostate cancer but of pancreatic cancer!) and the effects of Zoladex - which your site has shown me can cause such a condition!!

To express my thanks, I thought I would share my experience for others. During 2004-7, I got on with life as if the cancer was just a niggling twinge (I have commented that this period was like being on a train going through stations and tunnels - surgery, treatments, blood tests etc., where I was just a spectator). I look around and see folks in much worse states than I, and keep putting the big C back into its box. The last few months, it seems to have grown out of proportion somewhat, so the experiences of men and partners on this site has been most uplifting.

Many thanks - its good to know you are not alone!!

UPDATED

August 2009

My cancer returned 2 years ago, despite the prostate being removed, but at such a low level that it could not be located.

After a six month series of Zomega infusions to protect the skeleton, I was put onto Zoladex and although the PSA dropped, the last check in May showed a small increase from 0.01 to 0.1. Have suffered side effects from Zoldex including severe headaches every 7-10 days (which last for 3-5 days) which we have finally managed to control using Zomig, as well as realising that sense of depression over last 18 months also coincided with Zoladex (another potential side effect).

As of May this year, have also been diagnosed with a pancreatic insufficiency (pancreas only producing 50% of required enzymes) so now on Creon to try and deal with poor fat absorption. Not sure if it is linked to Zoladex (certainly medics would say not) but coincidentally my father who was diagnosed with prostate cancer at same time as me 5 years ago, was treated with Zoladex which managed the prostate cancer well - but then he contracted pancreatic cancer 3 years ago and died 12 months later.

We will watch and see, but hope it is only a strange coincidence!!

UPDATED

March 2011

Well, it is now 2011 and I am still here! The scare with the pancreas did not materialise into anything more serious than an ongoing pancreatic deficiency, and the side effects from the Zoladex - regular migraines, breast growth, depressive thoughts etc. are more like old friends that visit periodically, now rather than anything to worry about!

Life feels pretty good - especially when comparing yourself to others really battling with cancer on a daily basis, or to those facing the challenges being thrown up in Japan currently! I joined a Prostate Cancer group in Reading for a while, but ended up feeling a real fraud as most of the other members were in their late 60's and 70's, battling with often late diagnosed cancer.

I have started to take up old hobbies again - e.g. painting - - as I realise the importance of getting the most out of every day (life is a very precious commodity - enjoy each and every moment!).

Good luck to you all out there as you wrestle with your health challenges.

UPDATED

June 2012

It is now 8 years since my diagnosis and operation, and 5 years since the prostate cancer appeared again.

After 5 years of hormone treatment - using Zoladex jabs every 3 months, I have agreed with the oncologist to stop the treatment for a while to see what happens with the PSA - all new territory! After having suffered from side effects from the hormone treatment - severe migraines, mild depression, breast growth, hot flushes and weight gain, I will be interested to see how removal of the hormone treatment from my body effects me. It is early days - 4 months since my last Zoladex jab - but I have noticed a marked reduction in migraine headaches over the last 3-4 weeks. Looks promising!

I continue to feel a bit of fraud when attending the local Prostate support group, as many of the other guys (generally in their late 60's & 70's) tend to have to cope with greater difficulties with their conditions and treatment. I seem to be pretty healthy really! I feel the greatest challenge I have had with the hormone treatment over the last 5 years has been the effect of loss of drive and the mild depressions on my working life - especially in the earlier days. The period has seen me taking redundancy from my employer of 12 years, and going out on my own as an independent consultant. The decisions all seemed right at the time, but I wonder how much was influenced by my sense of reduced self worth brought about by the Zoladex in the first couple of years. As time has progressed, those feelings have subsided as my body has come to terms with the drug, but it was one of the side effects that I did not realise I was experiencing until after the time.

For those going onto Zoladex, it might be worth recognising that you can get some strange emotional and mental side effect,s that could effect decision making. For all that, the last 5 years have been enjoyable - as I have mentioned before, with family tree research, meeting discovered family members out in Australia, and some interesting consultancy assignments. I continue to view my disease as only a minor irritation, and try to keep the focus on enjoying the variety and challenges of life instead!

Good luck to all those out there facing their own challenges!

UPDATED

July 2013

July 2013. After 18 months off Zoladex, my PSA has jumped from about 0.2 to 0.7 over the last 3 months, so its back to se the oncologist again. Last time it went up to 0.3, I was quickly hauled in for bone scans, MRI and the like, whereas this time the oncologist seems very laid back and is even talking about continuing to stay off Zoladex!

As with all cancer survivors, I'm keen to continue to keep a lid on the "little devil" as long as possible, so the meeting with the oncologist next week will be interesting. In terms of general health, I could not be better - even managed some paragliding on a recent holiday!

The improtant thing is to feel you have the disease under your control and not the other way round - and long may it stay like that!

UPDATED

August 2014

A year has passed, and the enemy is in sight again!!After a slow increase in my PSA levels in late 2013/2014, I had a Choline PET CT full body scan which showed only one source of the cancer - in a small pre-sacral lymph node at the S3 level, and nowhere else currently measureable.This new test provides a means of identifying small quantities of cancer which can then be dealt with in a suitable manner.In my case, it will be using intensity modulated radiotherapy, which will be focused only on the one lymph node and should not badly effect other organs around the site. Have just started the treatment so will see how things progress.

My expectation is that we will deal with this source of cancer and then all will be quiet for a few more years until it starts to grow somewhere else - and then it will be a new set of treatment. It does mean that we are in control of the cancer rather than the other way round.

Over the years, I have found that it is well worth graphing your PSA levels to monitor change, as it is un-expected change that seems to be more important than absolute levels.

UPDATED

August 2015

It is a year on now, and in the intervening time we tried focussed beam radiotherapy to treat the one lymph node identified as having cancer, but the PSA did not drop. A further Choline PET CT scan showed that the original lymph node was clear but an adjacent one was not - so we went back onto the Bicalutamide hormone treatment for a month to see what happened. The result was a halving of the PSA from 4 to 2 but 5 weeks later it had climbed up to 4 again, so time to see the oncologist again!

His reaction surprised me as he suggested immediate commencement on a 6x 3 week cycles of Taxotere chemo treatment to try and address these unruly cancer cells I seem to have developed (and which had become resistant to hormone treatment!)

I'm now at the end of the second cycle - first cycle seemed to have all the side effects - one bad session of sickness, several of diarrhoea, continuous mouth infection and a cold sore, aching knees and limbs for a week, feeling very low, and the return of my incontinence - so its back to wearing a pad! Second cycle was much better with medication provided to reduce the nausea, no diarrhoea, improving incontinence and less aches and pains so almost looking forward to the next 4 sessions !!

What is the future for me, not sure - reading the NICE reports on Taxotere and survival rates seems to indicate a median of about 18 months - but that is only median so maybe I could be at the far end....10-15 years, who knows!!

This was me at the start of the treatment - with my icecap on - to reduce hair loss, icegloves to help nails and skin and a couple of wine coolers on my feet to help their nails and skin cope with the chemicals - looks more like preparation to launch in to space!! :)

Tony's e-mail address is: tony_sawyer77 AT hotmail.com (replace "AT" with "@")

NOTE: Tony has not updated his story for more than 15 months, so you may not receive any response from him.


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