Patients Stories

Prostate cancer is the number one cancer among men and accounts for nearly one-third of all cancer cases in men.

The survival rate for prostate cancer is rising dramatically every year. When caught early, chances are good for a full recover. With new prostate cancer treatment protocols and earlier detection, there is much new hope for those diagnosed with this cancer.

We would like you to get involved and also hear your personal stories about prostate cancer, news, interesting links, and anything else you feel like talking about. No registration required!


11 Comments

admin

June 23, 2011at 5:28 pm

My Prostate Cancer experience by Peter Tyson (Derby) (sent as an email to the red sock campaign)

November 2009, Started experiencing problems when urinatiing knew something was wrong as there was not much of a flow and sometimes it came out like a water sprinkler, as it was near Christmas I didnt want to tell my wife Jill or alarm her so I carried on as normal, January 2010 I went to my GP, she checked my prostate by doing a digital rectal examination (DRE) and said it was a little enlarged but not to worry as there was no lump or bumps. The following day I went to have a blood test unaware that it was a PSA test. On that thursday called me at home to say that she was reffering me to an urgent Urology appointment as there was some cause for concern. The following tuesday I went with Jill to see the Urology consultant who did another DRE before deciding what to do with me next, he then said he would send me for a biopsy it was at this point Jill my wife put her head in her hands and lifted up and said I need to lie down, the mention of me having a biopsy had made her almost pass out. The consultant helped Jill onto the couch and took her pulse!! At this stage I hadnt even had a positive prostate cancer diagnosis and this was the effect it was already having on my family. I was still unaware that my PSA was extremely high or even what a PSA test was for.
February 11th 2010 was the day of my biopsy, I was feeling very anxious and frightened but the unknown, and what the results of the biopsy were going to be, I think at this stage CANCER had crossed my mindotherwise why was I having a biopsy!!.
I came home the same day and by early evening it felt as if my stomach was about to explode and this was real pain! before this if I did have cancer I didnt feel ill or have any pain.
I was now feeling very emotional and extremly low for the next few days.
On the 13th February my wife was at work when the postman delivered a letter to a an appointment had been made for me to get the results of my biopsy the appointment was for 17th March 2010. That month seemed to go so slowly but our minds were racing with every conceivable thought passing between us but surely it must be something simple it couldnt be cancer otherwise they would have wanted to see me earlier.
Jill had an appointment at the doctors that week and mentioned that my appointment had come through and it was a while away, the doctor got onto the hospital and they brought the appointment forard by a week as by this time we were becoming anxious.
So now our anxiety levels were rising by the day as we thought about the possible outcomes of the biopsy, it was like mental torture and we had no one to turn to and no information to guide us.
9th MARCH 2010 well this is the day that changed my life FOREVER, We met with a Urology nurse specialist and it was her that told me it was CANCER and it had spread to the lymph nodes and my PSA was at 121. We were now asking ourselves what is thisPSA thing we had never previously heard of it. The facts are that for a man of my age (mid fifties) it should have been 4 or less!! so we now know that 121 was not good news. things got even worse when I was told the result of my biopy gave me a Gleason score of 5+4 =9 the nurse said it wasnt curable only containable and she said it could possibly be contained for many months and possibly years. Gosh it was all to much to take in suddenly my life was nearly over and in a few months I may have left this world, there was so much I wanted to ask but my mind was whizzing round so the only questions I could ask were trivial. I went away with a course of tablets which I assume now were casodex or similar which they told me was to help against a flare up of the PSA after two weeks of the tablets I had an injection of hormone treatment which lasted one month before they started me on three monthly injections. I was sent away and told that another appointment would be made for me for three months time to see Dr Kumar the Oncology consultant. When I saw the Oncologist he said well you are on hormone treatment but we dont know how long that it will work because your PSA was so high it is highly likely that you have metastatic disease, this was such a lot to take in I felt as if they had my coffin made before I had even had a chance to fight this darned disease.
It cant be true I had NO pain and the scans were clear, maybe I didnt want to listen to what the consultant was saying anymore.
I knew my body and how I felt although I did still feel very emotional.
When we decided to tell our two adopted children Dominick (15) and Amy (13) our son was shocked and Amy kept asking is dad going to die, that tore at my heart strings and didnt help how Jill and I were feeling.
Each time we visited the hospital we came away felling lower and lower which developed into depression. I eventually decide to change my consultant to have a second opinion really. The new consultant was jolly and very approachable and although he was still honest and straight he did listen to what Jill and I had to say.
I kept asking if I could have radiotherapy (RT) as why if there was no sign of metatstaic disease wasnt I given a chance to try it.
After much badgering by Jill and myself and after the consultant explaing the positives and the negatives of RT for me I got my wish and in early November 2010 I got my wish and started on a seven week course of radiotherapy at Derby Hospital at last I was beginning to see some light at the end of the tunnel (and it didnt look like a train coming in the opposite way!!).
Without my knowledge Jill was now surfing the internet looking for information about prostate cancer , I hadnt asked her to but she never listens to me anyway but I am so pleased now that did because she found some wonderful prostate cancer people out there in internet world and one in particular was Keith Cass a man with metastatic prostate cancer who had founded the red sock campaign to raise the awareness of this deadly disease. Keith has been a source of great knowledge and has helped me immensely and he is someone I will be forever grateful he has been with me guiding me over the telephone and got me through some of those dark days and he has made me think differently about my illness.
Unfortunately my radiotherapy wasnt meant to be!!!!!!!
I got bad radiation burn and spent a week in hospital from 23rd to 28th November feeling very low and depressed but Keith was never far away and even took time to travel all the way from Cardiff just to see me, his helpfulness and chat kept me going.
My outlook now is that I will die one day but of something else.
Christmas 2010 came and went as a blur as I was just looking forward to the New Year so that I could start my radiotherapy again, my new positive thinking got me over the crucial time when the radiotherapy had to be stopped before Chrismas. When the radiotherapy is over I will be on hormone therapy for around three years when hopefully I will be signed off as cured. I just want to finish this treatment and get back to some normality although I now know my life will never be the same again.
Thanks to Keith and my wife Jill I now know how to deal with CANCER and I am living with it and although I have cancer it hasnt got me.
More to tell as my life progresses.
PETER TYSON

Dominic Rai

August 9, 2011at 10:36 am

Inspiring story – thank you for sharing your experience Peter

“…although I have cancer it hasnt got me”.

I have a 48 year old friend recently diagnosed with prostate cancer and your story has helped to put things in perspective.

Dominic Rai
Cardiff

admin

August 16, 2011at 5:27 pm

A PROSTATE CANCER STORY FROM ABERDARE

I was diagnosed with prostate cancer at the age of 57 not having experienced any problems or ill health.
In 40 years of working I think I had only ever been sick for 2 weeks.
I had gone to see my GP for painkillers for a painful hip and back, to enable me to finish a building job I was doing before Christmas and he suggested that I return in the New Year for a routine MOT, i.e. blood tests.
I was pretty complacent about it and never intended to make such an appointment, but my WIFE did it for me and I went along for the tests … cholesterol, diabetes, and PSA – which I hadn’t heard of.
Within two days the surgery had contacted me regarding the result of the PSA test.
I had a DRE and was referred to a Consultant Urologist.
Following on from there I had a needle biopsy (which confirmed the presence of cancer cells) and scans, and was asked what I wanted to do. The options were – “watch and wait” ; surgery or radiotherapy.
In the meantime, we had researched other options and I decided I would try brachytherapy and went to Leeds where this particular procedure was being done.
I had a course of Zoladex injections for a few months to try and reduce the size of the prostate in readiness for the procedure .. but unfortunately in my case it was not successful (prostate was too large) and the nbrachytherapy was not an option.
I then underwent radiotherapy at Velindre hospital and experienced very few side effects.

What I would say is – thanks to my GP I was lucky for this to be diagnosed in its early stages, BUT at the time, I didn’t know, and it wasn’t explained to me that such pain in the pelvic area ( the reason for my visit to the GP) could be as a result of prostate cancer extending outside the prostate gland itself.
I wouldn’t have been so complacent if I’d known or it had been explained to me.
Also, when attending the hospital.. I appreciate I was not one of the worst cases.. and I also apprecite any decision had to be mine – but I felt at the time that the professionals couldn’t make up their mind which course of action was best for me.

I know that a high reading in the PSA test in itself is not necessarily indicative of cancer, but it is the only method we currently have and it is a starting block or a marker.

Since having been diagnosed I have urged as many men as possible (over 50) to request this test. BUT, I would urge caution here… if you don’t want to know the answer, or cant handle the results of the test, this can be a problem.

I think there needs to be much more publicity about the PSA test.
Like most cancers, if it is detected early enough the long term outcome is far better.

Before having the biopsy I asked for a guesstimate of the chances of my having prostate cancer on my PSA readingat the time and was told 30%… I appreciate it was only an educated guess… but it proved to me how important it was to have the biopsy, which detected the cancer.

I felt I had to keep asking questions… the information was not given easily… especially when it came to surgery and the risk of subsequent incontinence. It was a deciding factor for me to go for radiotherapy when I was told in answer to my question the risk of incontinence following surgery was 70%.
I felt I needed as much information as possible to make an informed decision.
(The contributor wants to remain anonymous but he is in contact with red sock via email)

G Evans

September 1, 2011at 7:51 pm

In the USA they have large numbers of Afro-americans. These men are FAR mor vulnerable to prostate cancer. The USA screens (via PSA tests) most men over 50.

The USA has a population of over 300 Million. The UK has a population of about 60 Million.

In the UK about 10,000 men die of Prostate cancer each year.
The USA has 5 times as many people. So, we should expect about 50,000 deaths in the USA from Prostate cancer. WRONG, only 30,000 a year die.

Still, the case for PSA screening is not proven?

Here is my reply to this comment:
ONLY??? 30,000 men that is still a lot of men and if you add in the men who have been treated and possibly cured because their prostate cancer was caught at a stage that was treatable you can see the number would be enormous.
Why are more men being treated? Well its because men and therir families are becoming more aware of the dangers of ignoring the health of their prostate.
Screening? We should certainly be offering screening to those men most at most at risk the afro/american men so often get overlooked in American society yet they are in the high risk group. So the question should be ‘How do we inform the men who dont visit their doctor, of the risks?’
Give our men the chance of saying NO or YES to the tests that lead to a diagnosis of prostate cancer at a stage when a cure may be possible. Keith S. Cass (19th Sept 2011).

eddy newman

September 8, 2011at 9:02 am

I have advanced prostate cancer it is in my bones.It is going to kill me.There is nothing i can do about it.I live a wonderful life.I owe this wonderful life to a total stranger KEITH CASS for his belief in what he does. He gave me hope when i had none. Showed me the way when i was lost.Turned alight on when i could not find my way out of a dark room.With my cancer i have walked up a mountain. Put pen to paper to tell my story. he did all this for me.

eddy newman

September 8, 2011at 10:46 pm

Keith
I was at the velindre today with Eddy and we saw Doctor Barber. He would like to read his story on prostrate cancer with Abiroterone, he gave a few reasons why. He appeared to be very interested that he had taken notes on his progress with the drug and what it had done for him.

I felt so proud that for the first time a high ranking doctor was interested in what he had written, I feel that the doctor would use it for the good of everyone in there fight with this cancer. Thank you for asking him to put it all down on paper, I know he can express his feelings and views in writing, he always keeps a diary.
Jean

G Evans

October 15, 2011at 7:43 pm

Keith, you completely missed the point of what I was saying about “only 30,000″med dying of Prostate Cancer in the USA. II was simply pointing out that on a straightforward pro rata basis the figure should be over 50,000, and with the USA having so many Afro Americans, the figure could be even higher than that.

Their screening programme OBVIOUSLY works. I was trying to make the case for screening in the UK to be as extensive as the USA.

An ideal number of deaths would be nil, until that is achieved, at least they are trying in the USA. Our government hides behind rubbish claims that extra screening would be bad for men, women get numerous tests for Breast Cancer, loads of them are also negative, should they be abandoned? of course not!

roy hanson

November 11, 2011at 12:24 am

I have the same experience, but my surgeon removed the prostate (had cancer nodules), plus surrounding lymph nodes, the pathologist did a 14 point check, indicating no cancer.
I did a routine blood test later, NEGATIVE.
Now I am in potty training, wearing Depends, and doing kegal exercises. I found that coffee, anxiety, and smoking (not inhaling) can cause the bladder to spasm.

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