My second meeting was set up with a Radiotherapist at a major cancer hospital.
He explained that they use a specialist branch of radiotherapy called brachytherapy to treat prostate cancer patients.
During this procedure you have small radioactive 'seeds' put into your prostate. This then emits radiation over a period of time and kills the cacer cells.
The advantage of brachytherapy over normal radiotherapy is that the radiation is much more specifically targeted. In external beam radiotherapy, the beam passes right through your body and damages healthy tissue as well as cancer cells. Not so with brachytherapy. You also have no need to keep visitng the hospital for doses. Eventually the seeds radiation expires.
He quoted stats of 30% chance of impotence. A 60% -80% chance of being cancer free after then years.
He thought incontinence was unlikely to be an issue, but warned you could experience irritation for up to three months with a patients experiencing a burning sensation and an urgent need to pee.
On questioning he thought brachytherapy was a better solution to surgery as it had less potential impact on incontinence, although interestingly his stats of being cured of cancer were worse than the surgeon performing the radical prostatectomy.
I also asked him what he thought about HIFU ( ultrasound ) which I was reading a lot about. He repeated the surgeon's sentiments that I needed a gold standard proven technique with stats to back it up.
He did however offer the name of a HIFU specialist if I wanted to speak to him which indeed I did.
I left with a feeling that I was totally confused over which way to go. I wanted a specialist to tell me what I needed to do. How could I be qualified to make such a decision. Both brachytherapy and radical prostatectomy seemed unpleasant and I was terrified I would regret the decision. That being said brachytherapy seemed to be the less invasive and I was leaning that way if I had to choose between the two.
I decided to pursue HIFU as I had read reports in the press that it was new prostate cancer salvation, hoping it might prove to be a way out of this nightmare and after all it gave me some more time to stick my head in the sand and put off the decision.
I also asked the radiotherapist if I really could take three months to make a decision and he agreed that it was not an issue judging from the results of the biopsy.
Saturday, 5 December 2009
Friday, 4 December 2009
Option 1 Surgery
I am not naming hospitals or people but if you do go for surgery choose your surgeon wisely.
My surgeon gave me the following stats if I was to choose surgery:
40% chance of impotency, i.e. not able to get an erection.
2% chance of being incontinent after twelve months.
85% chance of being cancer free after ten years.
If the operation was robot assisted through key hole surgery, three days in hospital followed by recovery of around five weeks.
He also thought robot assisted surgery gave a marginally better chance of retaining sexual function.
After surgery and recovery I would suffer from stress incontinence.This means if you stumble or sneeze or somebody slaps you on the back you may get a small spray of urine.
Now I worried about this for some time as the thought of peeing myself repulsed me. However my McMillan nurse put things into perspective when she explained that any woman who has had a baby suffers from stress incontinence.
He also told me I would be suitable for nerve sparing, which is where they try and save the nerve which gives you erections.
Surgery breaks down into three choices, open surgery, keyhole surgery and robot assisted keyhole surgery. With robot assisted keyhole surgery the playing field so to speak is magnified and allows the surgeon to see with great precision what he is doing.
My surgeon left me with no doubt that his choice was robotic assisted and that it was a superior choice to radiotherapy.
Links
Video overview of Da Vinci machine
http://www.intuitivesurgical.com/products/da_vinci_video_overview.aspx
If you have a strong stomach you can watch an actual operation with the Da Vinci robot machine here
http://www.roboticoncology.com/educational-videos/index.php?ELEMENT_ID=965
Finally some humour, watch a Japanese surgeon perform origami with a Da Vinci robot.
http://www.youtube.com/watch?v=x9Bjs99A0k0
My surgeon gave me the following stats if I was to choose surgery:
40% chance of impotency, i.e. not able to get an erection.
2% chance of being incontinent after twelve months.
85% chance of being cancer free after ten years.
If the operation was robot assisted through key hole surgery, three days in hospital followed by recovery of around five weeks.
He also thought robot assisted surgery gave a marginally better chance of retaining sexual function.
After surgery and recovery I would suffer from stress incontinence.This means if you stumble or sneeze or somebody slaps you on the back you may get a small spray of urine.
Now I worried about this for some time as the thought of peeing myself repulsed me. However my McMillan nurse put things into perspective when she explained that any woman who has had a baby suffers from stress incontinence.
He also told me I would be suitable for nerve sparing, which is where they try and save the nerve which gives you erections.
Surgery breaks down into three choices, open surgery, keyhole surgery and robot assisted keyhole surgery. With robot assisted keyhole surgery the playing field so to speak is magnified and allows the surgeon to see with great precision what he is doing.
My surgeon left me with no doubt that his choice was robotic assisted and that it was a superior choice to radiotherapy.
Links
Video overview of Da Vinci machine
http://www.intuitivesurgical.com/products/da_vinci_video_overview.aspx
If you have a strong stomach you can watch an actual operation with the Da Vinci robot machine here
http://www.roboticoncology.com/educational-videos/index.php?ELEMENT_ID=965
Finally some humour, watch a Japanese surgeon perform origami with a Da Vinci robot.
http://www.youtube.com/watch?v=x9Bjs99A0k0
Wednesday, 2 December 2009
Scan Results and Follow up Meeting
Having the scans was probably the most difficult part of the whole process.
For some reson you fixate on the worst outcome "if it is in your bones it is not treatable."
During the scans you monitor the faces of the operatives to see if you glean some information. As the results take over a week to reach your consultant I guess they don't know at the time.
During the first scan which was checking the lympth glands you are given ear defenders. It sounded to me like an army of angry wasps as I was lying there and the radio which is piped through them was rendered useless.
It is during this period that you realise what is important to you.
Common I guess to anybody with children, I spent a lot of time worrying about them if the outcome was bad.
I did not realise how much waiting for the scan results was affecting me until I rang the McMillan nurse to confirm my appointment with the Urologist. Nonchalantly she said "just a sec I think we have the results of your bone scan here. Just a sec, oh yes they are clear"
At this point I broke down crying in a crowded office from the sheer relief.
The second result was given at the Urologists office 4 days later. We managed to work ourselves into a negative frame of mind. Having given us the bone results over the phone, they had not rung with the lympth gland results therefore it must be bad we semised.
But when we were called there was no McMillan nurse and a second all clear was given.
At this point I was asked if I had given any thought to how we were going to treat the cancer?
I had read the various leaflets but my focus had been on clearing the scans. In any case I needed more information, a lot more information in order to reach a decision.
"Take up to three months" the Urologist said and he would make an appointment for me to speak to the consultants for radiotherapy and prostatectomy treatments.
He went on to explain that prostate cancer is a very slow growing cancer and therefore I could take within reason as much time as I needed. A follow up meeting was scheduled for three months later to ensure I had made a decision and not buried my head in the sand.
What about other treatments I asked, HIFU in particular ( Ultrasound ) was one treatment I had read a little about and appealed as it seemed very uninvasive.
You need gold star proven treatment he said that have ten years data to back them up.
After that I waited for the meetings with the two consultants to arrive in the post and I also phoned back to arrange a meeting with a HIFU consultant. After all what did I have to lose by speaking about it and I really wanted the data fromm the horses mouth.
For some reson you fixate on the worst outcome "if it is in your bones it is not treatable."
During the scans you monitor the faces of the operatives to see if you glean some information. As the results take over a week to reach your consultant I guess they don't know at the time.
During the first scan which was checking the lympth glands you are given ear defenders. It sounded to me like an army of angry wasps as I was lying there and the radio which is piped through them was rendered useless.
It is during this period that you realise what is important to you.
Common I guess to anybody with children, I spent a lot of time worrying about them if the outcome was bad.
I did not realise how much waiting for the scan results was affecting me until I rang the McMillan nurse to confirm my appointment with the Urologist. Nonchalantly she said "just a sec I think we have the results of your bone scan here. Just a sec, oh yes they are clear"
At this point I broke down crying in a crowded office from the sheer relief.
The second result was given at the Urologists office 4 days later. We managed to work ourselves into a negative frame of mind. Having given us the bone results over the phone, they had not rung with the lympth gland results therefore it must be bad we semised.
But when we were called there was no McMillan nurse and a second all clear was given.
At this point I was asked if I had given any thought to how we were going to treat the cancer?
I had read the various leaflets but my focus had been on clearing the scans. In any case I needed more information, a lot more information in order to reach a decision.
"Take up to three months" the Urologist said and he would make an appointment for me to speak to the consultants for radiotherapy and prostatectomy treatments.
He went on to explain that prostate cancer is a very slow growing cancer and therefore I could take within reason as much time as I needed. A follow up meeting was scheduled for three months later to ensure I had made a decision and not buried my head in the sand.
What about other treatments I asked, HIFU in particular ( Ultrasound ) was one treatment I had read a little about and appealed as it seemed very uninvasive.
You need gold star proven treatment he said that have ten years data to back them up.
After that I waited for the meetings with the two consultants to arrive in the post and I also phoned back to arrange a meeting with a HIFU consultant. After all what did I have to lose by speaking about it and I really wanted the data fromm the horses mouth.
Tuesday, 1 December 2009
The Diagnosis
Returning from my two week holiday in early June I am reminded of the situation by a letter from the hospital inviting me to a meeting to discuss my biopsy.
Unbelievably during the holiday I have hardly thought about it, comforted by the biopsy consultant who had told me the odds were in my favour. My prostate gland looked healthy and I shouldn't worry.
Now however the appointment brought me back to earth with a bump. If it was clear they would phone me I reasoned.
Two days later as my name was called I noticed a McMillan nurse waiting to greet me with the Urologist. This looks bad I thought.
The Urologist wasted no time and informed me my biopsy had revealed cancer on one side of my prostate gland. This had a Gleason score of 3+4=7. I will explain the Gleason score in a separate post.
In this situation it is like a bomb going off in the room. The doctor said a great deal but I remember very little. The McMillan nurse is present because if it is bad news the patient rarely remembers much apart from the word cancer.
Fortunately my partner was able to write it all down.
In reassuring tones I was told that I had a medium aggressive cancer and owing to lack of symptoms it was thought it was caught early. However before discussing treatment options some scans would be necessary to determine if it had spread to my bones or lymph glands.
If it was in my bones it was not treatable and if it was in my lymph glands it could spread to other organs.
Then I was given leaflets for the two main treatment options Radiotherapy and complete removal of the prostate gland, radical prostatectomy. A third option active surveillance or watchful waiting was also discussed, in which you just monitor the cancer but it was quickly ruled out as I was too young.
Prostate cancer is actually a very slow growing cancer and unknown to most people autopsies on men over seventy from road traffic accidents has revealed most men die with prostate cancer. Because it is so slow in developing it is usually something else which the person dies from rather than the cancer. Therefore active surveillance can be a viable option for a lot of people.
Armed with this imformation a follow up appointment was made to discuss the result of the scans and treatment options from there.
Unbelievably during the holiday I have hardly thought about it, comforted by the biopsy consultant who had told me the odds were in my favour. My prostate gland looked healthy and I shouldn't worry.
Now however the appointment brought me back to earth with a bump. If it was clear they would phone me I reasoned.
Two days later as my name was called I noticed a McMillan nurse waiting to greet me with the Urologist. This looks bad I thought.
The Urologist wasted no time and informed me my biopsy had revealed cancer on one side of my prostate gland. This had a Gleason score of 3+4=7. I will explain the Gleason score in a separate post.
In this situation it is like a bomb going off in the room. The doctor said a great deal but I remember very little. The McMillan nurse is present because if it is bad news the patient rarely remembers much apart from the word cancer.
Fortunately my partner was able to write it all down.
In reassuring tones I was told that I had a medium aggressive cancer and owing to lack of symptoms it was thought it was caught early. However before discussing treatment options some scans would be necessary to determine if it had spread to my bones or lymph glands.
If it was in my bones it was not treatable and if it was in my lymph glands it could spread to other organs.
Then I was given leaflets for the two main treatment options Radiotherapy and complete removal of the prostate gland, radical prostatectomy. A third option active surveillance or watchful waiting was also discussed, in which you just monitor the cancer but it was quickly ruled out as I was too young.
Prostate cancer is actually a very slow growing cancer and unknown to most people autopsies on men over seventy from road traffic accidents has revealed most men die with prostate cancer. Because it is so slow in developing it is usually something else which the person dies from rather than the cancer. Therefore active surveillance can be a viable option for a lot of people.
Armed with this imformation a follow up appointment was made to discuss the result of the scans and treatment options from there.
Tests & Biopsy
It's May 2009 and we are going on holiday. As part of the preparations I am going to the doctors surgery for holiday jabs. I also intend to have a "well man check".
Tell him to check your prostate my partner shouts. She has been listening to an artice on the radio about BBC food campaigner Geoff Tansey who is recording podcasts about his own experiences of prostate cancer.
At the doctors surgery the doc tells me to come back in 10 years when I am 60 but I insist telling him about the article on Radio 4 and that they had said "more lives would be saved if more younger men had prostate cancer checks" Reluctantly the doctor arranges for a PSA test the following day. PSA stands for Prostate specific antigen and the test is an indication that you may have prostate cancer.
48 hours later the doctor is on phone, flustered. Your PSA test has come back indicating you may have prostate cancer he says. He stresses that in two out of three cases the reading is a false positive caused by an infection or an enlarged prostate.
I am referred to the Urology dept of the local hospital and over the next three weeks I have two more tests. Both are positive and the reading is rising. Once again everybody reassures me I am young and therefore it is unlikely I am positive but they need to arrange a biopsy to find out once and for all if I have prostate cancer or not.
I was very frightened by the thought of the biopsy The procedure involves taking around twelve thin slices from your prostate gland. A camera and necessary equipment is inserted into your back passage in order to take the samples. The good news is that this done in pairs so you have to endure around six slices.
The reality though was it did not really hurt although I can speak only for myself. Uncomfortable would be a more apt description. It is done in a very small room which seemed to have a lot of people in it. A nurse tried to distract me by putting her face close to mine and asking me about my upcoming holiday. This to begin with, concerned me more as realising she was trying to distract me, I thought gosh this is going to be bad.
The consultant who carried out the procedure showed me images of my prostate gland which in her opinion looked perfectly normal and her advice was that I should not worry and go and have a marvellous holiday. Odds are on your side were her parting words.
Links
BBC food campaigner Geoff Tansey
http://www.bbc.co.uk/radio4/youandyours/prostate_cancer.shtml
Tell him to check your prostate my partner shouts. She has been listening to an artice on the radio about BBC food campaigner Geoff Tansey who is recording podcasts about his own experiences of prostate cancer.
At the doctors surgery the doc tells me to come back in 10 years when I am 60 but I insist telling him about the article on Radio 4 and that they had said "more lives would be saved if more younger men had prostate cancer checks" Reluctantly the doctor arranges for a PSA test the following day. PSA stands for Prostate specific antigen and the test is an indication that you may have prostate cancer.
48 hours later the doctor is on phone, flustered. Your PSA test has come back indicating you may have prostate cancer he says. He stresses that in two out of three cases the reading is a false positive caused by an infection or an enlarged prostate.
I am referred to the Urology dept of the local hospital and over the next three weeks I have two more tests. Both are positive and the reading is rising. Once again everybody reassures me I am young and therefore it is unlikely I am positive but they need to arrange a biopsy to find out once and for all if I have prostate cancer or not.
I was very frightened by the thought of the biopsy The procedure involves taking around twelve thin slices from your prostate gland. A camera and necessary equipment is inserted into your back passage in order to take the samples. The good news is that this done in pairs so you have to endure around six slices.
The reality though was it did not really hurt although I can speak only for myself. Uncomfortable would be a more apt description. It is done in a very small room which seemed to have a lot of people in it. A nurse tried to distract me by putting her face close to mine and asking me about my upcoming holiday. This to begin with, concerned me more as realising she was trying to distract me, I thought gosh this is going to be bad.
The consultant who carried out the procedure showed me images of my prostate gland which in her opinion looked perfectly normal and her advice was that I should not worry and go and have a marvellous holiday. Odds are on your side were her parting words.
Links
BBC food campaigner Geoff Tansey
http://www.bbc.co.uk/radio4/youandyours/prostate_cancer.shtml
Introduction
In June 2009 I was diagnosed with prostate cancer aged 50 and with no noticable symptoms.
I have since had my prostate gland removed through a procedure called robot assisted laparoscopic radical prostatectomy.
Chances are that if you are reading this, you or somebody you know has also been diagnosed with prostate cancer. Finding out what is right for you or your loved one can be a daunting task.
This blog by documenting my own thoughts and actions attempts to answer some of the questions you may be facing. It should not replace your own research but hopefully will be a pointer in the right direction for you to decide what is best for your own circumstances.
There is a lot of misinformation on the web. A friend of mine who had lost a loved one through cancer on hearing I had a raised PSA level urged me not to go anywhere need the web. He was right, I had just incorrectly read that my reading indicated I had months to live. At the same time there is a lot of very good information on the web. Seperating the chaff from the wheat takes time. Hopefully I can point out a few good sites as well.
A lot of people helped me during my difficult period and hopefully I can give a little back.
It will take a while to write all of this down but I intend to publish a bit more most days so check back often.
I have since had my prostate gland removed through a procedure called robot assisted laparoscopic radical prostatectomy.
Chances are that if you are reading this, you or somebody you know has also been diagnosed with prostate cancer. Finding out what is right for you or your loved one can be a daunting task.
This blog by documenting my own thoughts and actions attempts to answer some of the questions you may be facing. It should not replace your own research but hopefully will be a pointer in the right direction for you to decide what is best for your own circumstances.
There is a lot of misinformation on the web. A friend of mine who had lost a loved one through cancer on hearing I had a raised PSA level urged me not to go anywhere need the web. He was right, I had just incorrectly read that my reading indicated I had months to live. At the same time there is a lot of very good information on the web. Seperating the chaff from the wheat takes time. Hopefully I can point out a few good sites as well.
A lot of people helped me during my difficult period and hopefully I can give a little back.
It will take a while to write all of this down but I intend to publish a bit more most days so check back often.
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