YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

BRONZE

George Hardy and Lynn live in Tyne & Wear , England. George was 54 when he was diagnosed in April 2005. His initial PSA was 182.0 ng/ml, his Gleason Score was 3+3=6 and he was staged T4. The treatment that was chosen was Hormone Therapy (Androgen Deprivation Therapy) plus Radiation (External Beam Radiation Therapy). Here is his story:


Earlier this year I was getting tired and annoyed at having to get up 2 or 3 times a night to pee. I blamed it on too many cups of tea before bedtime. Anyway, a few days before my 54th birthday at the end of March I decided to see my GP about the problem. On 24th March a blood test revealed a PSA level of 182.0 ng/ml .

From that day things moved on at such a speed it`s almost a blur to me now.

April 12th: Urologist did a DRE and said he was 99% certain I had PCa. Ordered me in for a cystoscopy.

April 14th: Biopsy. I should have been able to go home after the anaesthetic wore off, but every damn thing went wrong. The blood just wouldn't stop clotting. I ended up with a catheter forced into me and remained in hospital 7 days even ending up having to have morphine and an emergency procedure to clear my bladder of clots. I had told staff constantly that the catheter wasn't working properly. They wouldn't listen. That was the first and last time I ever trust anybody in the medical profession. I now question every single aspect of my treatment and demand full involvement. This attitude has since paid off.

April 16th: I have a T4 and Gleason 3 + 3. The Gleason score is clouded in mystery. I had to demand it time and time again, but heard just flimsy excuses. Therefore I suspect it may be higher.

April 18th: Bone scan. Clear.

April 20th: X-Rays Pelvic area and skull. OK.

April 26th: Started hormone therapy: 6 x 50mg Cyproterone tablets daily

May 9th: I discovered the work of Prof Jane Plant regarding breast/prostate cancers and diet.

May12th: PSA level : 48.7 ng/ml The Cyproterone was stopped and I had my first Zoladex implant (12 weeks dose)

May 15th: I started the Jane Plant diet 100%. No more dairy food etc etc.

May 23rd: First MRI Scan. Showed spread to left seminal vesicle.

July 14th: My wife and I were invited to the home of Jane Plant and her husband. She is a truly amazing, inspirational woman, and for such an eminent scientist, a lovely down to earth person.

July 21st: PSA Level: 3.3 ng/ml

I spent the best part of July pestering my urologist and the specialist nurse to get me an appointment with an oncologist. There seemed to be a marked reluctance to do this and I discovered that the urologist had intended to just keep me on hormones and see me every 6 months. I wasn't going to accept this so I pushed like hell and finally got my wish. It really does pay to be very firm....but very (reluctantly) polite.

Aug 4th: 2nd Zoladex Implant

Aug 9th: Seconod MRI Scan revealed reduction in size of cancerous areas.

Aug 22nd: Finally got to see an oncologist, 19 weeks after diagnosis. He dismissed my theory that the tumour should really be a T3b by informing me that there was pelvic floor involvement.....first time this had ever been mentioned... most definitely T4 and that I must have Radiotherapy.

Sept 21st: Started RT. 37 treatments totalling 74Gy. Excellent machine: Siemens Primaton Linear Accelerator combined with CT scanner. Very accurate 3D-CRT , known as IGRT...Image Guided Radiotherapy.

Sept 27th: Saw my Oncologist again. He expressed amazement that I was still able to have sex, though not too frequently, after so many months on Zoladex. He sent me for another blood test. PSA: 2.01 ng/ml, Testosterone: 1.4. All is as it should be! He insists I stay on the Zoladex for a further 30 months. He also informed me that it is the right side of my pelvic wall which is cancerous.

Oct 1st : After only eight RT treatments my urine flow is very restricted.

Oct 9th: I started one capsule of Flomax a day to relax muscles around the urethra and ease the restriction caused my swelling after RT.

Oct 13th: PSA : 0.9 ng/ml

Oct 21st: Urine flow even more restricted. Now given 2 Flomax a day.

Oct 27th: Third Zoladex Implant

Nov 8th: Saw Oncologist and asked what happens next? He again insisted I must stay on Zoladex. He told me no scans were planned for me now and that 3 monthly PSA tests would be the only reliable markers of my PCa.

Nov 11th: Armistice Day...and it's ceasefire day for me too as I have the final RT session. I have to say the RT has gone remarkably smoothly. Very few side-effects: The increased frequency and urgency to pee, and a few days where I was extremely tired. No skin irritations or bowel problems whatsoever. I`m quite sure my diet helped me through this.

 

UPDATED

December 2005

 

 

Dec 11th. It's a month since my last RT treatment, and the urination problems are fast clearing. From needing to take 2 Flomax tablets a day within a week or so of starting the RT I'm now able to go almost 48hrs before I feel the need to take just one tablet to ease the flow.

After RT ended, I'll have to admit to some days of depression. I felt really low for a while, as though the whole thing had finished in an anti-climax. However, I'm told that this is quite normal. I do have a few down-days now and again, but the optimistic days outnumber them.

I'll have a PSA test done in early January, then see the oncologist for the first time post-RT, and to round off a busy few days I'll be having the 4th Zoladex injection since my diagnosis in April this year.

 

UPDATED

January 2006

 

 

Jan 5th 2006 I had my dreaded 3-monthly PSA test. Today (Jan 6th) my very friendly and super efficient specialist nurse emailed me with the result. It's down to 0.2 ng/ml.

I really didn't expect this result because I thought all the radiation might have given a distorted reading. PSA was 2.1 ng/ml at the start of RT in September and 0.9 ng/ml half way through my 37 RT sessions on 13th Oct 05.

When I think back to my very first result in March 05........It was 182 ng/ml, and I didn't have a clue what PSA meant or how serious a T4 was. Geez.........dont you learn a lot very fast when you know you just HAVE to do it! lol '

On Monday 9th Jan I will see my oncologist for the first time since my RT ended, and the following week I have to go and get that 'orrible Implant injected. That will be my 4th 12-weekly Zoladex injection since diagnosis.

Doesn't time fly when you're having....ermmm....fun?? lol.

UPDATED

January 2006

 

 

At the latest appointment with my oncologist on Jan 9th this year, I quizzed him about my original Gleason score, which I've always thought was shrouded in mystery. He agreed with me that it should definitely have been Gleason 7 at the very least. So, it seems my lack of faith in the urologist was well founded. Thank God I no longer have to deal with the man.

 

UPDATED

January 2006

 

At my latest appointment with the oncologist he said he was very happy with the way I'd gotten through Radiotherapy, and the fact that my PSA was now down to 0.20 ng/ml. He said that if I can provide stable PSA levels over the next year or so, while on Zoladex, I should be able to stop the treatment and perhaps go intermittent when my full three years is up.

Ah well.............only 26 months to go...and at least the "little blue pills" (Viagra) continue to work well enough....not fantastically, but good enough I suppose!

 

UPDATED

April 2006

 

 

On 30th March I had my 3-monthy PSA test, in advance of the next Zoladex implant on 13th April.

I'm delighted to report that it's again 0.2 ng/ml, as I come up to one year since diagnosis on 12th April 2005 with a PSA of 182 ng/ml.

For the last 2 months though, I've been feeling very cold and tired, and it seems this is a side-effect of the Zoladex. I have none of the more common side effects such as hot flashes etc.

I'm still able to have intercourse with the help of the little blue pills, but it's been about 6 months since I was able to have an orgasm.

I appear to have survived the 37 RT treatments with no bad effects whatsoever, for which I'm truly grateful.

UPDATED

August 2006

 

Today (July 6) I had my 6th three-monthly zoladex injection. Following my latest blood test, I'm pleased to report my PSA is still stable at 0.2, and I'm told my blood has never been as healthy for years. I'm sure I owe this to the Jane Plant diet. I feel fit and healthy and the coldness and tiredness has passed. Prof Plant published an updated version of "Your Life In Your Hands" in June of this year and I was honoured to be included in the book as a case study. She also has a new website dedicated to cancer patients, and this comes fully online on 1st August. The site is called Cancer Support International.

 

UPDATED

August 2006

 

PSA now <0.1 ng/ml. My local hospital lab only works to one decimal place, and I was told that this latest level is too small for them to quantify. (I did have another test at my main hopital 6 weeks ago, and the result there was 0.12 ng/ml)

At last! I never thought I'd get down to this level. It has taken 17 months to get from 182 ng/ml to here, and I feel today is an important milestone in my journey. I am still adhering strictly to the Jane Plant diet, absolutely NO dairy or processed foods at all, and I continue to have 3-monthly Zoladex injections. However, I will have been on these jabs for 2 years come April 2007, and I'm going to try and persuade my oncologist that I should go intermittent with the treatment from then. I will see him in October and I'll report my progress then.

I'm willing all of you to get encouraging results too. Don't forget, I am always willing to answer any emails.

 

UPDATED

December 2006

 

 

December 7th 2006: Latest PSA: still <0.1 However, testosterone has now fallen to its lowest ever level: 0.6 It was around 1.4 back in August. I have now come to the conclusion that this depletion of testosterone has been the cause of the extreme fatigue I have suffered since October. From June thru September I felt so well and full of energy, even starting to work out 3 times a week at a gym. Then I began to feel a tiredness I have never before experienced. I felt as though my body was being totally drained of every ounce of energy and vitality. In the past I had suffered a few tired days before and after each 3- monthly zoladex injection, but this was different. I was worsening day by day.

December 12th 2006. Today I saw my oncologist and told him bluntly that I wanted my testosterone raised somehow. I was hoping he would agree to me stopping Zoladex in April 2007 after 24 months of it, but he warned strongly against this in view of my high T4 cancer staging. However, we reached a compromise. If my PSA can stay at <0.1 till Aug 07 (12 months at that level)) then I can a chance and stop treatment.

December 20th 2006. My oncologist rang me at home. He said he's been reconsidering my case, and agreed that I was suffering badly because of the low testosterone. Apparently he is surprised at how well I have done in the last 20 months and has suggested I now cease Zoladex and begin Casodex 150, one tablet a day.

Apparently this doesn't destroy the testosterone, but allows it to access only the brain receptors, not other parts of the body. He reckons I should soon regain my energy, and even my libido!! WOW!

I am now awaiting a call from the hospital where I was very soon due to have another Zoladex injection. Hopefully the new regime has been arranged.

I will keep you posted. I must admit, I could not have stood this exhaustion much longer. I just couldn't funtion normally at all, every day started with an energy level of zero, and it was soul destroying. I am truly praying that I may now be on the road home, fingers crossed!

 

UPDATED

February 2007

 

 

Feb 1st 2007. After 6 weeks on Casodex 150 alone, PSA level remains stable at <0.1. but Testosterone has at last risen: Now 0.9. It's now 20 weeks since the last zoladex injection (12 weekly) and I'm only now beginning to feel some energy returning. I feel sure that stopping Zoladex was right for me. The tiredness was just too much to cope with after 20 months.

It seems to me that it's only guys who have had the combination of radical radiotherapy PLUS the hormone injections who experience such extreme fatigue. I've known others who have been on Zoladex alone for 5 years and not experienced this type of exhaustion. Just my own theory!! Gotta blame somebody or something for almost 4 months as a Zombie!!

 

UPDATED

March 2007

 

 

MARCH 1st 2007 Latest Blood Test: PSA remains at <0.1 Testosterone 0.8!

 

UPDATED

April 2007

 

 

Just got results again. PSA is stable at <0.1 for the 8th consecutive month. I am aiming for Christmas this year to be able to tell my onco that I wish to stop all treatment. (Keeping everything crossed of course). That would be quite some result after the T4 with such a poor prognosis!

 

UPDATED

June 2007

 

 

May 29th 2007 Results: PSA <0.1 Testosterone now climbing: 1.9.

 

UPDATED

August 2007

 

 

July 26th 2007 Results: PSA <0.1 Testosterone 7.1 nmol/L.

August 9th 2007: Saw an endocrinologist about my tiredness which has been worsening. He diagnosed extreme exhaustion, probably due to the effects of testosterone depriviation for so long. Seven specific blood tests ordered, mainly hormonal. Have to wait over 3 weeks for results.

August 23rd 2007: PSA <0.1 Testosterone now up to 10.4 nmol/l.

 

UPDATED

September 2007

 

 

Sept 18th 2007: Big BIG news...Both delighted and terrified now!!

My oncologist agreed to see me three months earlier than planned as I wanted to ask if he would agree that I could stop or maybe reduce my current treatment of Casodex 150. I'd been on it for 38 weeks. Also, for 13 consecutive months my PSA had been stable at <0.1

To my amazement there was absolutely no argument from him. From today I am off all treatment!! I will obviously have regular PSA tests and remain vigilant, but maybe, JUST MAYBE....the beast is beaten. It's incredible that 30 months ago I was told I had maybe 2 or 3 yrs left to live.

In my heart I believe that I was just plain stubborn (and lucky) that I decided to fight the urologist's treatment plan, and that the combination of HT, 37 Radiotherapy treatments PLUS keeping strictly to Prof Jane Plant's suggested diet all worked together beautifully.

I am too sensible to say I'm cured, as I know the beast could return with a vengeance, but for now I can feel at rest for a while.

20th Sept 2007: Another Blood test: PSA < 0.1 for the 14th month. Testosterone up to an amazing 15.2 UMOL/L. This was the result of changing from Zoladex(Lupron) to Casodex 150 in December 2006 when my lowest ever testosterone count of 0.3 had me on me knees with complete exhaustion.

 

UPDATED

November 2007

 

 

Sept 20th 2007 PSA <0.1 Testosterone 15.2nmol/l

Oct 15th 2007 (4 weeks off meds) PSA 0.18 Testosterone 20.00mnol/l

Nov 8th 2007 (8 weeks drug-free) PSA 0.3 Testosterone 16.4nmol/l

 

UPDATED

December 2007

 

 

Dec 6th 2007 PSA now 0.4ug/l Testosterone 19.6nmol/l Still no PSA "surge" and I'm feeling so relieved about that after 12 weeks without any form of treatment.

For some reason, this 3-month marker was a real milestone for me. I worried more about that result than all my previous ones!

 

UPDATED

January 2008

 

 

Jan 4th 2008. PSA now 0.47 ng/ml after 16 weeks off all medication. It's rising at a rate of 0.1 per month, something which doesn't worry me. I just wonder how long it will take to reach that fabled plateau...and just what that plateau figure actually is for me.

Later:

Jan 30th 2008 PSA. 0.7 ng/ml....a slightly higher rise this month. Testosterone 25.3mm/L....Never seen this as high!(and never imagined I could get back to a normal level after all the ADT)

 

UPDATED

May 2008

 

 

Feb 20th 2008 PSA 0.7 Testosterone 22.6 nmol

March 25th 2008 PSA 1.52 Oh? Doubled?? Oncologist expresses concern, but I reckon it's OK...I DO have a prostate, after all. Testosterone 20.7 nmol It is now exactly half a year, 26 weeks since I ceased all meds.

April 22nd 2008 PSA 1.1 (Phew!) Testosterone 18.0 nmol (down again this month).

 

UPDATED

July 2008

 

 

May 9th PSA 1.1 Testosterone 20.7 nmol

June 3rd PSA 0.9 Testosterone 17.3 nmol

July 1st PSA 1.2 Testosterone 22.3 nmol

(41 weeks off all meds now)

 

UPDATED

August 2008

 

 

July 29th 2008 PSA 1.0 Testosterone 18.6 nmol

 

UPDATED

October 2008

 

 

On Sept 16th I saw my oncologist, and it marked one full year with no meds. Results?....PSA 0.94 Testosterone 22.9. ?... the onco is astounded!!! He can't believe it's actually down on previous appointments.

 

UPDATED

December 2008

 

 

Recent blood tests:

Oct 14 PSA 1.0 Testosterone 18.9

Nov 25 PSA 0.9 Testosterone 20.2.

 

UPDATED

March 2009

 

 

Had a troublesome few months but continue to have excellent PCa test results.

Persistent bowel problems have been a real 'pain in the ass' but all tests showed nothing sinister. I had a colonoscopy done in late January, 3 polyps were removed and it was found I had a prolapse. I see the gastroenterologist in a few weeks time to discuss what's to be done - if anything.

Here are the last few PSA results. I'll keep the figures just to PSA, as testosterone has remained consistent - at normal and healthy levels - since I stopped hormone therapy in Sept 2007.

Jan 6 PSA 1.2

Jan 14 PSA 1.36

Feb 24 PSA 1.1

Later: Had a good chat with gastroenterologist last week and the news is good but annoying.

Poplyps removed were benign, no inflamatory bowel illness or worse, just that damn prolapse, but even that doesn't require an op at this stage. Trouble is, she is convinced I have IBS (Irritable Bowel Syndrome), probably brought on by the radiation. I think she may be right, but the annoying part about it is that there is no 'cure' and I will have to restrict my diet even more.

I'd noticed that steering clear of certain fruit and veg gave me better days. At the moment I'm having 4 good days and 3 bad each week, a definite improvement,

Geeez, I'm gonna be so thin I'll be disappearing soon, lol.

 

UPDATED

April 2009

 

 

April 6th PSA 1.3..

 

UPDATED

May 2009

 

 

Monday 18th May 2009: PSA 1.26 Another good result, and it's now one year and 8 months since I ended treatment.

The only downside had been this past year of bowel troubles - but I'm very hopeful that I'm near to solving that problem after experimenting with different types of pills and tinkering with my diet a little.

As the old saying goes...'Watch this space'..


George's e-mail address is: jordi_lad02@hotmail.com