People keep telling me its still early days, 8 months, I suppose it is. Some people who have had what I have had are permanently dysfunctional and have given up totally or are contemplating implants. Read the story in the news the other day about the guy in the USA who sued his surgeon for compensation following an implant that went wrong. Really I couldn't contemplate an implant.
The whole ED thing messes about your head. Doctors just don't get it and that's just the male ones; female doctors , though sympathetic , are still females and really don't understand how it feels to me a male. In both cases, they just don't understand the importance to the male of the species of his reproductive parts, the nerve and sensory pathways and the impact on the brain and emotions. When all of this is switched off after 52 years of life its devastating and you spend everyday thinking about your loss.
With cancer and incontinence the thoughts and emotions are different and you can get your head around these - though the fear of cancer comes back with each PSA test, even though you have had surgery and had it removed - you constantly worry about bio chemical recurrence. That will never go away.
With ED they promise you that it wont be a major problem, you don't want kids anymore? No problem you say, I don't want kids - I want to live. But they don't go into the impact of dry orgasms, lack or erectile tissues - no erection and possibly like that for life. Also they don't mention that you can suffer approx. 15% reduction in size - for some its inches !! When you are faced with cancer that's the primary pressure on your mind, but months after you get torn by the fears as you go through what they term penile rehabilitation. Its a man thing and one that women or male doctors who haven't been through this just don't understand the impact.
You feel like you have been surgically castrated, but worse than that, you also lose your libido, the thoughts that you had - so it really impacts you emotionally.
So you use a VED - vaccum pump, medical grade, daily as you are told unless you do this then the muscle ( penis ) will wither away. The phrase is use it or lose it. Use it means exercising it and getting it as big as the device will allow to ensure atrophy doesn't settle in. Plus you use the daily PDE5 inhibitors , in my case daily Cialis 5mg - this is to increase the blood flow to again prevent cellular death. You want as much blood as you can, arterial , to get in there. But there is nothing you can do to repair the emotional aspects - you just pray or ignore it.
Lots of thoughts around the treatments and whether I should ask for the MUSE (urethral suppository) again to give it a try, or maybe the Caverject ( injection ) . May have a chat in August with the URO in Shrewsbury.
In the meantime, the patent for Viagra expired this week and they are saying that the price of a blue pill will drop from nearly £10 a pill down to 60p. I am not on these, though if I was you are only allowed 4 a month due to the costs. I also cant take them combined with my Cialis - not unless I want my heart to stop ... just joking .. its about blood pressure dropping. I don't want to gamble with the GP stopping the Cialis as my script doesn't come up for a review for another year.
So friends who have gone through what I am going through say - hang in there. One chap , his machinery kicked in 12 months after surgery .... so I am counting the days/weeks/months.
Monday, 24 June 2013
Still getting internal sorness - must be my weight gain - have to lose some weight
Been a few weeks since my last posting so its time for an update.
Am walking a lot now, getting back to my regular hillwalking. Hopefully this will help lose the weight I have put on. Am not a doctor but I do suspect that some of the pain/soreness I am still getting internally is purely down to me putting on weight during recuperation.
Think of it this way, the internal stiches are not made of elastic so I assume that as I was thinner when I had surgery 8 months ago I was stitched up pretty tightly. Having put on the flab around the waistline this has probably pulled on the internal wound. So my plans are that if I keep exercising and try and lose weight then maybe these niggling pains will go. Though I do sit here sometimes and think I have a minor hernia. Especially after a long drive and getting out of the car.
Still mustn't moan or cry wolf, time to move on with life.
Bit of good news, had a blood test with work for checking for Lung Cancer. Being an ex smoker thought it would be good to have the test. Brilliant, came back negative, however with a recommendation that I get tested every 2 years as I have a 27% chance of contracting during my lifetime.
Not long until I go to Belgium to do voluntary work with Scouts at an international Jamboree, then I come back and go to see my urologist in Shrewsbury for check up and a standard NHS PSA test.
Am walking a lot now, getting back to my regular hillwalking. Hopefully this will help lose the weight I have put on. Am not a doctor but I do suspect that some of the pain/soreness I am still getting internally is purely down to me putting on weight during recuperation.
Think of it this way, the internal stiches are not made of elastic so I assume that as I was thinner when I had surgery 8 months ago I was stitched up pretty tightly. Having put on the flab around the waistline this has probably pulled on the internal wound. So my plans are that if I keep exercising and try and lose weight then maybe these niggling pains will go. Though I do sit here sometimes and think I have a minor hernia. Especially after a long drive and getting out of the car.
Still mustn't moan or cry wolf, time to move on with life.
Bit of good news, had a blood test with work for checking for Lung Cancer. Being an ex smoker thought it would be good to have the test. Brilliant, came back negative, however with a recommendation that I get tested every 2 years as I have a 27% chance of contracting during my lifetime.
Not long until I go to Belgium to do voluntary work with Scouts at an international Jamboree, then I come back and go to see my urologist in Shrewsbury for check up and a standard NHS PSA test.
Saturday, 20 April 2013
Perineural Invasion - new article published and something to make me think
I was monitoring twitter the other day and spotted the following article Perineural Invasion On Prostate Biopsy: Does It Mean that I Have Advanced Prostate Cancer?
In simple terms this describes how the cancer invades the spaces around a nerve and can use these nerves that are inside the prostate as channels to escape the capsule and invade other part of the body.
"Since having PNI on final pathology clearly and negatively affects prognosis its presences should influence the treatment decisions."
As I didn't know I had PNI at biopsy it wasn't detected , it couldn't impact my decision to have surgery. But not detected was just that they didn't hit the sampling area. It makes sense though to assume that I was a higher risk and need to ensure that I keep up the monitoring each year. Based on this article I would fall into a category that could have a recurrence within the next 3 years. ( John Hopkins study ).
Finally this quote sums it up " Perineural invasion (PNI) on biopsy is a very significant and needs to be treated as such, despite Gleason grading and PSA scores. It can indicate high risk prostate cancer, even in men with who otherwise we would consider to be low risk. "
In simple terms this describes how the cancer invades the spaces around a nerve and can use these nerves that are inside the prostate as channels to escape the capsule and invade other part of the body.
"Since having PNI on final pathology clearly and negatively affects prognosis its presences should influence the treatment decisions."
As I didn't know I had PNI at biopsy it wasn't detected , it couldn't impact my decision to have surgery. But not detected was just that they didn't hit the sampling area. It makes sense though to assume that I was a higher risk and need to ensure that I keep up the monitoring each year. Based on this article I would fall into a category that could have a recurrence within the next 3 years. ( John Hopkins study ).
Finally this quote sums it up " Perineural invasion (PNI) on biopsy is a very significant and needs to be treated as such, despite Gleason grading and PSA scores. It can indicate high risk prostate cancer, even in men with who otherwise we would consider to be low risk. "
6 Month Post Open Radical Prostatectomy and things going well
I had my 6 month check up with Mr Doherty at the Birmingham Prostate Clinic last week and all things are looking good.
Everything has healed up well. I am in total control of my continence and as part of Mr D's study ( I am one of his index cases ), I have a green flag for continence. Put it this way I haven't had an accident with wetting at all, even with sneezing in the past 3 months. Last weekend I had to renew an outdoor emergency first aid course and we did mock scenarios on the hill that involved all kinds of stretches and bodily shapes and I had no problems with leaking.
Only thing I have been warned of is the danger of hernia's which is common post operation, especially with putting on weight - so I need to lose a stone or two. More walking needed.
Erectile dysfunction is still there and I am to carry on taking the 5mg Cialis daily for the next 6 months until I see him again. The MUSE I am giving a miss for a while as they may have caused a UTI - my fault , tricky to administer. Had a one of dose of antibiotics from the GP's to clear the UTI. Quite common apparently with prostate cancer patients post operation, especially post using the catheter. It may well have not been the MUSE but the catheter as I had burning of and on for months.
Mr D has written to the GP and the GP has ordered an Osbon EreCaid Esteem VED. They don't come in cheap, I think they are nearly £300 but these are medical grade devices. This has to be used a couple of times a day to prevent atrophy and fibrosis which is sets in could be permanent. Lots of guys use these so its part of the therapy. Had a bit of a laugh with some mates when I told them about using this - most guys ( non prostate cancer )who play around with such devices buy cheap non med versions to try and increase size - bit of a con but there is a whole industry out there. From an ED perspective there is some life so the nerves are starting to recover. Mr D believes between 6 and 12 months is a key period for recovery. I have read several medical journals that put it between 12 and 18 months - we will see.
A worrying aspect of the meeting with Mr D was the issue of PSA values. 3 months ago I was < 0.1. My next ultra sensitive test will be at 12 months post op. I said I would expect to have a result of <0.1 again. He said not to worry if there was a slight increase. I questioned this and he said that in nerve sparing surgery quite often as the nerves start recovering this can cause a spike in PSA. If this happens then I would be retested and if it doesn't go down then we would see what other treatment might be needed. Humm .. got me thinking about biochemical recurrence again.
Everything has healed up well. I am in total control of my continence and as part of Mr D's study ( I am one of his index cases ), I have a green flag for continence. Put it this way I haven't had an accident with wetting at all, even with sneezing in the past 3 months. Last weekend I had to renew an outdoor emergency first aid course and we did mock scenarios on the hill that involved all kinds of stretches and bodily shapes and I had no problems with leaking.
Only thing I have been warned of is the danger of hernia's which is common post operation, especially with putting on weight - so I need to lose a stone or two. More walking needed.
Erectile dysfunction is still there and I am to carry on taking the 5mg Cialis daily for the next 6 months until I see him again. The MUSE I am giving a miss for a while as they may have caused a UTI - my fault , tricky to administer. Had a one of dose of antibiotics from the GP's to clear the UTI. Quite common apparently with prostate cancer patients post operation, especially post using the catheter. It may well have not been the MUSE but the catheter as I had burning of and on for months.
Mr D has written to the GP and the GP has ordered an Osbon EreCaid Esteem VED. They don't come in cheap, I think they are nearly £300 but these are medical grade devices. This has to be used a couple of times a day to prevent atrophy and fibrosis which is sets in could be permanent. Lots of guys use these so its part of the therapy. Had a bit of a laugh with some mates when I told them about using this - most guys ( non prostate cancer )who play around with such devices buy cheap non med versions to try and increase size - bit of a con but there is a whole industry out there. From an ED perspective there is some life so the nerves are starting to recover. Mr D believes between 6 and 12 months is a key period for recovery. I have read several medical journals that put it between 12 and 18 months - we will see.
A worrying aspect of the meeting with Mr D was the issue of PSA values. 3 months ago I was < 0.1. My next ultra sensitive test will be at 12 months post op. I said I would expect to have a result of <0.1 again. He said not to worry if there was a slight increase. I questioned this and he said that in nerve sparing surgery quite often as the nerves start recovering this can cause a spike in PSA. If this happens then I would be retested and if it doesn't go down then we would see what other treatment might be needed. Humm .. got me thinking about biochemical recurrence again.
Wednesday, 27 March 2013
Approaching 6 Months since Open Prostatectomy
Hi everyone
Its been a couple of months so I thought it about time that I gave everyone an update on my recovery.
All those niggling wound pains seem now to have gone. I have a slight problem that's irritating me - maybe its my own fault. I seem to be putting on weight and cant seem to control it. As a result it seems to stretch me when I am working out or hillwalking. My own fault I suppose but its a mystery as to why the body reacts the way it does after a light meal. It could be a result of the ED drugs that I am taking daily - 5mg Cialis - will speak with the consultant when I see him in a couple of weeks.
On the ED front, there is life in the old dog but not fully there yet so the meds are being used for the rehabilitation and to prevent atrophy and fibrosis. Again will be speaking to consultant in a couple of weeks. Been a problem with getting prescriptions for MUSE as the GP wasn't happy prescribing. Have had to have trial doses of 250 and 500 mg and waiting to try the 1000 mg but a bit nervous - if it works too well I might have to go to A&E ... other half has said I will be going on my own -:) The Prostate Cancer UK help forums recommend the use of VED's - might ask for one.
Went for an MRI a few weeks back - over 2 hours in the machine and had to go back and get rescanned. This was all to do with those pain problems in my arm post op. The results have now come back and I am seeing a neuro surgeon tomorrow in Birmingham . It seems that there is a problem with the C5/6 and C6/7 in my spine - the letter said they found an abnormality. I will be told tomorrow. This could be the reasons why I am having weekness in the arms, feet and tingling in the fingers - have been researching on Dr Google ... fatal .
One thing I need to ask tomorrow is about the pains in my lower spine - notice this when hill walking.
Great news on the incontinence front - since my 3 month check up I haven't used a single pad and despite colds, sneezes and stretches I haven't had one accident. Cant wait to give the news to Mr D at the next visit so I can get a 'green' on the traffic light system - am currently amber due to a mishap over Christmas.
Will post an update after tomorrow.
Bye for now.
Oh .. forgot .. volunteered to be a speaker and peer support volunteer for Prostate Cancer UK. Have done all my training and now waiting to help people out. Thought it worthwhile to raise awareness and help others - after all they helped me and still continue to help.
UPDATE- 20th April - I have a prolapsed disc at C7 and C5-C6 spondylosis. Recommendations are that I take physio and carry on with medication for the nerve pain.
Its been a couple of months so I thought it about time that I gave everyone an update on my recovery.
All those niggling wound pains seem now to have gone. I have a slight problem that's irritating me - maybe its my own fault. I seem to be putting on weight and cant seem to control it. As a result it seems to stretch me when I am working out or hillwalking. My own fault I suppose but its a mystery as to why the body reacts the way it does after a light meal. It could be a result of the ED drugs that I am taking daily - 5mg Cialis - will speak with the consultant when I see him in a couple of weeks.
On the ED front, there is life in the old dog but not fully there yet so the meds are being used for the rehabilitation and to prevent atrophy and fibrosis. Again will be speaking to consultant in a couple of weeks. Been a problem with getting prescriptions for MUSE as the GP wasn't happy prescribing. Have had to have trial doses of 250 and 500 mg and waiting to try the 1000 mg but a bit nervous - if it works too well I might have to go to A&E ... other half has said I will be going on my own -:) The Prostate Cancer UK help forums recommend the use of VED's - might ask for one.
Went for an MRI a few weeks back - over 2 hours in the machine and had to go back and get rescanned. This was all to do with those pain problems in my arm post op. The results have now come back and I am seeing a neuro surgeon tomorrow in Birmingham . It seems that there is a problem with the C5/6 and C6/7 in my spine - the letter said they found an abnormality. I will be told tomorrow. This could be the reasons why I am having weekness in the arms, feet and tingling in the fingers - have been researching on Dr Google ... fatal .
One thing I need to ask tomorrow is about the pains in my lower spine - notice this when hill walking.
Great news on the incontinence front - since my 3 month check up I haven't used a single pad and despite colds, sneezes and stretches I haven't had one accident. Cant wait to give the news to Mr D at the next visit so I can get a 'green' on the traffic light system - am currently amber due to a mishap over Christmas.
Will post an update after tomorrow.
Bye for now.
Oh .. forgot .. volunteered to be a speaker and peer support volunteer for Prostate Cancer UK. Have done all my training and now waiting to help people out. Thought it worthwhile to raise awareness and help others - after all they helped me and still continue to help.
UPDATE- 20th April - I have a prolapsed disc at C7 and C5-C6 spondylosis. Recommendations are that I take physio and carry on with medication for the nerve pain.
Monday, 21 January 2013
All clear ( or as near as ) after 3 month PSA Test
Visit to the BPC at The Priory to see Mr D.
Great news re the PSA test < 0.01 which is the lowest reading done by the lab. As a result of this I dont need another PSA test until 12 months post op. Basically I am now on annual PSA's, which makes sense as if a recurrence occurs its going to be over a year so why bother with the 3 monthly PSA's that the NHS do? At least I dont have to suffer the anguish of PSA anxiety every three or six months. So next PSA will be in 9 months time.
Completed the EPIC survey document and we went over the questions. Bit disappointed as I am amber for continence due to still using the occasional pad. Hopefully I will go green at the six month check up ( in 3 months time ). ( I have only used a pad for a long distance drive for work on the motorway )
ED, Mr D doesnt want me using Caverject or VED but instead to combine my existing Cialis with Muse once a week. He will write to GP to prescribe, not looking forward to this as apparently it can sting when you use it. We had a discussion around the interpretation of the term 'erection' on the questionaire as it is subjective - agreed my view that its where it is firm enough for penetrative intercourse - I am not there yet. But I am positive that within a year I will be there as he saved both neurovascular bundles, and Mr D seems confident also.
We talked about the upper back/arm pain and he wants me to get this sorted out - so do I. He will refer me to a consultant for shoulder and MRI if GP doesnt. I said i will speak to GP this week and get resolved.
The other pains should go away - including hopefully the abdomen pain - as i didnt have a lump at the spot he wasnt concerned at the moment. To be reviewed at the next visit in another 3 months.
More exercise will help with all these niggling pains.
So, great day really ...
... update - GP believes that the neck/arm pain has been caused by a trapped nerve - 3 hours+ in theatre and putting pressure on my neck will have resurfaced an old problem I had from about 20 years ago. GP also not happy to give me MUSE as I wasnt instructed in clinic. After two weeks of talking to GP and the local NHS hospital I have been prescribed 1 pellet of MUSE to trial the use. I then have to go back and discuss with GP. Makes you wonder why I bother !! Its wrong that we have to fight for our rights to have treatments. Also a highly qualified consultant urologist , one of the best in Europe recommends what I need and a local GP says no! Terrible situation.
Great news re the PSA test < 0.01 which is the lowest reading done by the lab. As a result of this I dont need another PSA test until 12 months post op. Basically I am now on annual PSA's, which makes sense as if a recurrence occurs its going to be over a year so why bother with the 3 monthly PSA's that the NHS do? At least I dont have to suffer the anguish of PSA anxiety every three or six months. So next PSA will be in 9 months time.
Completed the EPIC survey document and we went over the questions. Bit disappointed as I am amber for continence due to still using the occasional pad. Hopefully I will go green at the six month check up ( in 3 months time ). ( I have only used a pad for a long distance drive for work on the motorway )
ED, Mr D doesnt want me using Caverject or VED but instead to combine my existing Cialis with Muse once a week. He will write to GP to prescribe, not looking forward to this as apparently it can sting when you use it. We had a discussion around the interpretation of the term 'erection' on the questionaire as it is subjective - agreed my view that its where it is firm enough for penetrative intercourse - I am not there yet. But I am positive that within a year I will be there as he saved both neurovascular bundles, and Mr D seems confident also.
We talked about the upper back/arm pain and he wants me to get this sorted out - so do I. He will refer me to a consultant for shoulder and MRI if GP doesnt. I said i will speak to GP this week and get resolved.
The other pains should go away - including hopefully the abdomen pain - as i didnt have a lump at the spot he wasnt concerned at the moment. To be reviewed at the next visit in another 3 months.
More exercise will help with all these niggling pains.
So, great day really ...
... update - GP believes that the neck/arm pain has been caused by a trapped nerve - 3 hours+ in theatre and putting pressure on my neck will have resurfaced an old problem I had from about 20 years ago. GP also not happy to give me MUSE as I wasnt instructed in clinic. After two weeks of talking to GP and the local NHS hospital I have been prescribed 1 pellet of MUSE to trial the use. I then have to go back and discuss with GP. Makes you wonder why I bother !! Its wrong that we have to fight for our rights to have treatments. Also a highly qualified consultant urologist , one of the best in Europe recommends what I need and a local GP says no! Terrible situation.
Friday, 18 January 2013
3 months post op approaching.. ultra sensitive psa results due
Went and gave my blood test last week ready for my three month post operative meeting with consultant urologist. I have heard on support forums the expression 'PSA Anxiety' which is the fear and waiting for your results. Its especially hard after you have had surgery as you are hoping above all for an undetectable result as this means the big C has gone away. The theory is two tests after surgery , three months separating each , indicates the cancer has not persisted. That's the first goal. You then go for years of regular tests and as long as the PSA doesn't creep up and become detectable then there is no biochemical recurrence, that's the ultimate goal. The one that stays with you the rest of your life. The reason why the anxiety will always be there. But apparently it gets easier over time.
So Monday I go to The Priory and the beginning of the monitoring starts. Fingers crossed.
Apart from this how have I been. Climbs another Welsh mountain last Sunday. It gets easier. Also I need to lose weight. Have put to much on after the operation and I think its hampering my full recovery.
I have still got that pain in my abdomen still and back pains. Might speak to GP.
ED, well , natural erections are still non existent but I am taking the medication. I need to find out what BUPA can do and otherwise see GP next Thursday about NHS treatment. It comes free on the NHS as its a side effect of prostate cancer treatment. It could be anything up to years to sort this out. Have to stop myself getting depressed about this.
Continence shock.... I thought I had it all sorted out. Haven't worn a pad in a couple of weeks but I have been at home. Big work day today and I did over 7 hours driving and a 3 hours meeting. Have caught a cough and it started last night. Had a bit of stress incontinence last night. Thank god I wore a pad and dark suite today as I was coughing most of the day and leaking. Just found it really hard to control, especially in the car. Still Tena 2 for men did the job nicely. Also gave me real confidence when at work. Seems it might take time to develop the technique when I had a cough.. especially one of these violent winter ones. This is really unusual for me as I don't get colds.
Snow... the whole country is worried about snow today. I was up before 6am and drove 200 miles south , had a meeting and then drove the same back. Shattered . Now the weather man says we may have the same snow on Monday. Please no. This may jeapordise my visit for my results. Really hope not.
Will update the blog here when I have had my clinic visit next week.
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