YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Alan Rollinson and Jennie live in Worcestershire U.K.. He was 65 when he was diagnosed on May 19, 2008. His initial PSA was 93.5 ng/ml, his Gleason Score was 9 and he was staged T3. His choice of treatment was ADT (Androgen Deprivation Therapy). Here is his story.

I am Alan's wife Jennie and I have found great comfort in this site. Its the best on the Internet. Alan doesn't know how to switch on a computer let alone go on a website!, so I will tell our story.

May 19, 2008. First day of retirement and the day we found out Alan had aggressive prostate cancer. Being told at hospital, you have incurable prostate cancer, its almost certainly spread and your sex life will be over.

He had no symptoms apart from his flow was a little slow. He never gets up at night and after being put off twice by his GP to have a PSA test after asking for one (once 5 years ago and once 2 years ago) because of the usual rubbish that some of the medical profession think about PSA testing.

Here we are now with our lives shattered. 11 of the 12 biopsies were cancerous. PSA 93.5 and Gleason 9. Bone scan negative. MRI negative. Urologist thinks it may have spread to seminal vesicle. Although when we went for a 2nd visit to the urologist he showed us a small shadow on his hip. So was sent for an x-ray. We rang up 2 weeks later ( having to chase all the time for results) to be asked if he had had a fracture of the hip. Which he hasn't. Now waiting for an MRI scan of the area.

If I sat a degree in prostate cancer I am sure I would obtain a first with honours! I have spent hundreds of hours reading up on it. We have been told that there is not a surgeon in the UK who would operate on Alan and radiotherapy is not an option.

He started on Casodex for two weeks followed by Zoladex monthly implant. We have had such a wonderful passionate sex life, and I feel so selfish because it breaks my heart to know that without any libido it can not be any more. But all I want is my lovely husband who I love so much to be well and here with me. We are very close and talk and laugh all the time.

How long can we hope for the hormone therapy to keep working (hopefully it will) is there an average time. The urologist would not tell us. I am a realist and like to no the scenario so we can plan.

I have read lots of encouraging stories similar to Alan's diagnosis but also some sad ones.

Thankyou for letting be ramble on. Would love to hear from any one of you guys.

Many thanks

Jennie Rollinson

 

UPDATED

November 2008

 

 

Its Jennie here. Went to see oncologist end of July. He advised not to have surgery or radiation as Alan's PSA and Gleason are so high. The results of the MRI were negative, thank goodness. He had a PSA test that day and the oncologist rang two days later to tell us it was down to 8.9. Had monthly injections till September then a three monthly one.

Saw the urologist in October - PSA down to 0.70. Alan seems to be coping very well with the Zoladex. To be honest he doesn't know any of the side effects. He doesn't read anything to do with prostate cancer. He gets hot flushes which are diminishing slowly. His energy levels are good. In fact we have taken up playing golf together which is fun. He has always watched his weight so he hasn't put any on. Maybe its a good thing not to know the side effects.

The heartbreaking thing is that his libido is nil. We have cried buckets and buckets. He says he feels guilty. Which of course he shouldn't but from what I have read, this is a normal feeling. I feel a sense of grieving for how we used to be. I know sex is not everything ,but when you know there will never ever be any sort of sexual contact again with the person that you love so much its so final...

I have put in a little box in the back of my mind that the Zoladex may fail eventually. We live for today and enjoy everything we do. And the best thing of all is that we became first time grandparents in August. What a blessing our grandson is!

Take care everyone.

 

UPDATED

April 2009

 

 

Had PSA test in January. It had come down from .70 to .30. Very encouraging. Urologist suggested maybe talking to oncologist again about radiotherapy. Alan wants to just keep on the Zoladex for now. He also takes 50mg of cyproterone for hot flushes which have worked well.

He is on the whole well. He gets a little more tired than he used to, but hey he is 66 this year. He is semi-retired and enjoys life.

Now for the fly in the ointment: he started having strange sort of tingling in his body mostly when he is cold and mostly in his legs but sometimes in his arms and back, so he went to his GP who suggested that it is possibly connected to his old back injury from his motor racing days. But as a precaution said he would get him to have a bone scan. The urology department said it would be wise to have a PSA test done as they don't like doing another bone scan in less than a year. So he is off to the pathology department today, and they will take it from there.

I am petrified. He has no pain anywhere. I would like to hear from any one who has had similar symptoms.

Jennie and Alan's e-mail address is: jennierollinson@vodafone.net