Being referred for a colonoscopy by the GP after 6 days of bleeding. Interesting reading that in the USA they recommend that Prostate Cancer patients have a regular screening with a colonoscopy as there is a relationship between prostate cancer and colon polyps/colorectal cancer. Regular screening enables the polyps to be caught early and removed before they turn cancerous. Recommended screening is every three years. Will have to discuss this with GP after my screening. Problem in the UK is that they don't do this screening. However if you are over 60 they do do this screening for men but not in relation to Prostate Cancer.
I suppose they think over 60 is ok as most prostate cancer occurrences are with men over 60. Just unfortunate a minority of us are under 60 and we are missed.
Other shocker was my weight: need to trim down. 117.8 kg with a BMI of 35.6 is well too heavy.
Must get out more or re-join the gym
Friday, 28 November 2014
Cancer / Recurrence free 2 years post Prostatectomy
Had my check up with the consultant October 2014 and PSA test which has come back with a less than 0.01 which is fabulous news. Consultant was kind when he suggested I had put on a few pounds. Really need to do something about the weight that I have put on. I can only put that down to feeling lethargic and not really wanting to do anything. Doesn't help that 2 years of ED plays on your mental state.
Monday, 21 July 2014
Pins & Needles, Numbness, Burning feet and legs, Lower Back pain - MRI July 2014
Last year following surgery i went and had an MRI that identified that I had Cervical Spondylosis in my upper Cervical spine at C5 and C6 and in the C6/C7 area I had a small disk herniation that was pinching a nerve, this being the cause of the pain in my left arm and the tingling in my left hand fingers.
That was over a year ago, since then I have had some physio, the pain in the arm has gone, but the arm now has a numbness running through it and I still get tingling in the fingers and occasional pain in the neck. This is especially apparent when leaning my head on my hands or putting any weight bearing pressure on my head/neck.
I was just going to live with this, afterall we all get old and suffer from wear and tear, but at the same time over the past year I have been getting pins and needles in my feet, with a burning sensation. I get pain in my feet for the first few steps getting up and walking after a while of the buring sensation. I also get numbness in my feet/legs. Around the base of my lower back I have also been getting pain, especially when walking and going down hill - similar to a jarring pain in my back. I went to the doctors, I was thinking that maybe this was pre diabetes due to my weight gain over the past few months. However the doctor gave me blood tests and they came back normal. She suggested I go back and see my neurosurgeon and get his advice. Booked an appointment with Mr Harland and saw him last week, 15th July. He was able to show me my MRI results of my Cervical Spine from last year which I hadnt seen before. ( Must ask him for a copy of them ). He went through basic tests and said he didnt think I had much to worry about but for belt and braces would like me to have an MRI of my Thoracic and Lumber Spine, plus go see another specialist at The Priory for a Nerve Conduction Study.
The machine at The Spire Parkway on friday 18th was newer and bigger than the one at The Priory so it wasnt as frightening. The whole time in the machine was about 40 mins. This first picture shows the upper Thoracic Spine.
I am not the consultant but i have compared my pictures with others that I have seen on the internet. On this picture the lowest disc here seems to be showing a bulge of disc/fluid against the spinal chord which may be causing spinal compression of some sort and another.
These pictures also seem to be showing that apart from 3 discs, the other 9 out of the 12 T discs are drying out ( dont know if this is what its called ). So old age is starting to demonstrate.
This can all be seen quite well in the picture above. The spinal chord is lovely and smooth and curved until you hit the bump near the bottom. Read up about lesions and other stuff at the weekend but I dont think anything like that is showing here.
We now move on to the Lumber spine. This seems to indicate at L1/L2 and L5/S1 there to be some minor disc herniation. Its comparable with looking at other peoples images on Google where they were diagnosed with the same.
The L1/L2 is tiny , its the one on the bottom at L5/S1 that I think is probably the real problem. Its probably taking all the pressure when I sit down and be a reason the pains/tingling is more pronounced when I put weight on these vertebrae.
That was over a year ago, since then I have had some physio, the pain in the arm has gone, but the arm now has a numbness running through it and I still get tingling in the fingers and occasional pain in the neck. This is especially apparent when leaning my head on my hands or putting any weight bearing pressure on my head/neck.
I was just going to live with this, afterall we all get old and suffer from wear and tear, but at the same time over the past year I have been getting pins and needles in my feet, with a burning sensation. I get pain in my feet for the first few steps getting up and walking after a while of the buring sensation. I also get numbness in my feet/legs. Around the base of my lower back I have also been getting pain, especially when walking and going down hill - similar to a jarring pain in my back. I went to the doctors, I was thinking that maybe this was pre diabetes due to my weight gain over the past few months. However the doctor gave me blood tests and they came back normal. She suggested I go back and see my neurosurgeon and get his advice. Booked an appointment with Mr Harland and saw him last week, 15th July. He was able to show me my MRI results of my Cervical Spine from last year which I hadnt seen before. ( Must ask him for a copy of them ). He went through basic tests and said he didnt think I had much to worry about but for belt and braces would like me to have an MRI of my Thoracic and Lumber Spine, plus go see another specialist at The Priory for a Nerve Conduction Study.
 |
| T Spine showing bulge on bottom disc pressing spinal chord. Also mystery dot showing through chord |
I am not the consultant but i have compared my pictures with others that I have seen on the internet. On this picture the lowest disc here seems to be showing a bulge of disc/fluid against the spinal chord which may be causing spinal compression of some sort and another.
 |
| Closer view of bulging fluid pressing on spinal chord |
These pictures also seem to be showing that apart from 3 discs, the other 9 out of the 12 T discs are drying out ( dont know if this is what its called ). So old age is starting to demonstrate.
 |
| Whole of T Spine in view - right at top is C6/C7 which had problems last year |
We now move on to the Lumber spine. This seems to indicate at L1/L2 and L5/S1 there to be some minor disc herniation. Its comparable with looking at other peoples images on Google where they were diagnosed with the same.
 |
| L Spine showing at base, L5/S1 bulge |
 |
| L Spine Sagittal View T2 Contrast - Disk Degeneration? |
Another view of the Lumber Spine is shown above. I was able to rotate the Sagittal view using the software supplied and at this angle it now becomes noticeable that L4/L5 is bulging as well as L1/L2. I suppose all of these can only get worse unless I do whatever I need to do to halt this degeneration. Have seen white papers on the Internet about Disk Degeneration Disease - I might be heading that way.
Am only presuming that nothing can be done about the above to correct the wear.
Found it fascinating at the weekend comparing my imaging with those of others online, just to see what they were diagnosed and was I similar. Its doesnt seem to be rocket science that the back pain and tingling must be this. Just glad its not something like MS or Diabetes.
I now have to wait for the appointment to see the specialist for the Nerve Conductive Study and then I go back to see Mr Harland on 31st. One thing i want to ask him about is a spot that was showing up on the MRI - and showed below:
Thursday, 3 July 2014
Genetic Testing and the BRCA 1 and BRCA 2 Gene mutation
NHS / NICE guidelines have now changed in relation to genetic counselling and testing for the BRCA gene mutation.
The Royal Marsden with Cancer Research and MacMillan have just published a paper http://www.royalmarsden.nhs.uk/SiteCollectionDocuments/patient-information/brca.pdf that gives all the details about Famility History and the link between Breast and other cancers , including prostate.
What is does say which is key for me " When thinking about who is at risk of having the mutation in the
family it does not matter if you are a man or a woman. Both men and women have BRCA1 and BRCA2 genes and men can also carry a faulty BRCA1/2 gene. The risk of developing cancer for men is not as great as it is for women but they can still pass the faulty BRCA gene on to their offspring." That to me is the crux as my daughter and son and their children , when they have them, could be at risk.
Having a daughter, two surviving sisters and multiple nieces and being the current only living relative who has had cancer, there is a real family interest in determining if I carry this inherited mutation as this might well impact those family members. If I have the gene then my sisters might also have it and then it may be passed down to their children as well as my own. As the above study states "Women in the UK have a 1 in 8 or 12.5% chance, on average, of developing breast cancer in their lifetime. Women with one or
two close relatives affected with breast cancer have a lifetime risk of 17-30%, depending on the specific family history. Women who have a BRCA1 gene mutation have a 60-90% lifetime risk
and women who have a BRCA2 gene mutation have a 45-85% lifetime risk. Women with BRCA mutations have an increased risk of developing breast cancer at a younger age. Also, BRCA mutation carriers who have had breast cancer have a higher risk of developing another new breast cancer, compared to women who develop sporadic breast cancer in the general population."
But its not just about women, this gene can be passed to the male side and as such will increase the risk of cancers such as Prostate at an early stage. Papers are now saying that men with the BRCA 2 mutation who develop what would be considered low risk prostate cancer for those without the gene are more likely to get advanced aggressive prostate cancer and as such should have immediate treatment rather than surveillance if cancer found.
This all adds weight to to getting checked to see if I have the gene problem so that my own children and those of my sisters can be aware if there is a problem and get checked early. For example, my son to be screened from 40 yrs and my daughter from 30yrs.
To get the genetic referral on the NHS you have to have a family history of cancers. Research this week established:
Mothers side:
Grandmother had breast cancer
Mother had Breast Cancer
Sister had breast cancer ( early onset, primary and secondaries, bilateral and died at 49 yrs )
An Uncle(Mothers brother) had Bowel Cancer
An Uncle(Mothers brother) had esophagus cancer
Grandfather , unsure what cancer he had - still investigating
An Uncle(Mothers brother) had lung cancer
Fathers side:
Father had Prostate Cancer (advanced, through bones etc.)
Grandmother had Breast Cancer
Based on the above, my GP has got me to complete the Family History forms and these have been sent to the NHS referral centre. Will wait and see if I get an appointment.
The Royal Marsden with Cancer Research and MacMillan have just published a paper http://www.royalmarsden.nhs.uk/SiteCollectionDocuments/patient-information/brca.pdf that gives all the details about Famility History and the link between Breast and other cancers , including prostate.
What is does say which is key for me " When thinking about who is at risk of having the mutation in the
family it does not matter if you are a man or a woman. Both men and women have BRCA1 and BRCA2 genes and men can also carry a faulty BRCA1/2 gene. The risk of developing cancer for men is not as great as it is for women but they can still pass the faulty BRCA gene on to their offspring." That to me is the crux as my daughter and son and their children , when they have them, could be at risk.
Having a daughter, two surviving sisters and multiple nieces and being the current only living relative who has had cancer, there is a real family interest in determining if I carry this inherited mutation as this might well impact those family members. If I have the gene then my sisters might also have it and then it may be passed down to their children as well as my own. As the above study states "Women in the UK have a 1 in 8 or 12.5% chance, on average, of developing breast cancer in their lifetime. Women with one or
two close relatives affected with breast cancer have a lifetime risk of 17-30%, depending on the specific family history. Women who have a BRCA1 gene mutation have a 60-90% lifetime risk
and women who have a BRCA2 gene mutation have a 45-85% lifetime risk. Women with BRCA mutations have an increased risk of developing breast cancer at a younger age. Also, BRCA mutation carriers who have had breast cancer have a higher risk of developing another new breast cancer, compared to women who develop sporadic breast cancer in the general population."
But its not just about women, this gene can be passed to the male side and as such will increase the risk of cancers such as Prostate at an early stage. Papers are now saying that men with the BRCA 2 mutation who develop what would be considered low risk prostate cancer for those without the gene are more likely to get advanced aggressive prostate cancer and as such should have immediate treatment rather than surveillance if cancer found.
This all adds weight to to getting checked to see if I have the gene problem so that my own children and those of my sisters can be aware if there is a problem and get checked early. For example, my son to be screened from 40 yrs and my daughter from 30yrs.
To get the genetic referral on the NHS you have to have a family history of cancers. Research this week established:
Mothers side:
Grandmother had breast cancer
Mother had Breast Cancer
Sister had breast cancer ( early onset, primary and secondaries, bilateral and died at 49 yrs )
An Uncle(Mothers brother) had Bowel Cancer
An Uncle(Mothers brother) had esophagus cancer
Grandfather , unsure what cancer he had - still investigating
An Uncle(Mothers brother) had lung cancer
Fathers side:
Father had Prostate Cancer (advanced, through bones etc.)
Grandmother had Breast Cancer
Based on the above, my GP has got me to complete the Family History forms and these have been sent to the NHS referral centre. Will wait and see if I get an appointment.
GP Check up and discussion of possible surgery problems
Hi all, well its been a while and I have almost been upbeat about things. For some time I have been getting pins and needles in the feet and ankles and have really ignored it thinking it would go away. However, recently it got worse so today I went along to the GP and we talked through it - and other matters.
Quite interesting , she wondered, as I have had it over a year, whether there was any possibility I had nerve damage following surgery. A new one on me, but you never know. Still, she was great and booked me for a load of blood tests as a starter to find out whats going on... we joked ... a mini MOT test.
{ Update 3rd July as this original post was written 12 June - blood tests all came back in the clear - booked in to see a neuro expert due to still having problems with the arm and neck, and now the legs issue }
She did ask me about doing a PSA but I declined as it will be tested via an ultra sensitive in oct at the Priory. It did lead me to saying to her that I don't see the possibility of any BCR - Biochemical Recurrence in the next 15 years as Mr D got it all out.
As usual , it made me think and read ... I learnt something from a new article today .. the most common failure in Prostate Surgery is cell leakage at the bottom of the prostate (the apex) - apparently there is no capsule at that point. Surgeons who leave too much behind so that your continence is ok and also to preserve the sexual function nerves often leave cancer cells as they cant see them!! http://www.prostrcision.com/qa/radical-prostatectomy Question 88.
Not that I am worried .... but it gives me a nagging doubt as the bulk of my tumours were at the Apex.
Never mind. Big thing at the moment is to get exercise. When I went into hospital I was under 17 stone, now I am 18 stone 1 pound. I have a waist of 45 and a BMI of 33.4 - Christ I am clinically obese.
Cured Cancer === now a fatty === time for action
Quite interesting , she wondered, as I have had it over a year, whether there was any possibility I had nerve damage following surgery. A new one on me, but you never know. Still, she was great and booked me for a load of blood tests as a starter to find out whats going on... we joked ... a mini MOT test.
{ Update 3rd July as this original post was written 12 June - blood tests all came back in the clear - booked in to see a neuro expert due to still having problems with the arm and neck, and now the legs issue }
She did ask me about doing a PSA but I declined as it will be tested via an ultra sensitive in oct at the Priory. It did lead me to saying to her that I don't see the possibility of any BCR - Biochemical Recurrence in the next 15 years as Mr D got it all out.
As usual , it made me think and read ... I learnt something from a new article today .. the most common failure in Prostate Surgery is cell leakage at the bottom of the prostate (the apex) - apparently there is no capsule at that point. Surgeons who leave too much behind so that your continence is ok and also to preserve the sexual function nerves often leave cancer cells as they cant see them!! http://www.prostrcision.com/qa/radical-prostatectomy Question 88.
Not that I am worried .... but it gives me a nagging doubt as the bulk of my tumours were at the Apex.
Never mind. Big thing at the moment is to get exercise. When I went into hospital I was under 17 stone, now I am 18 stone 1 pound. I have a waist of 45 and a BMI of 33.4 - Christ I am clinically obese.
Cured Cancer === now a fatty === time for action
Tuesday, 11 March 2014
That old Chesnut Perineural Invasion & Feelin Depressed over ED
Its been some time since I last wrote anything on the blog so I thought I would give you all an update. Back in work with a very active job and lots of travel, long hours and pressure - loving it. Though I am getting really tired. Its a different type of tiredness than I used to get before the PCa. Aches and pains have started to creep in and I keep thinking of that Pathology report that said Perineural Invasion(PNI).
Sitting in hotels at night on your own gives you time to think and to read. I must have read so many papers on the topic of PNI. What has now fascinated me is the nerve structures around the prostate and their relationship to the Erectile Dysfunction that's getting me down, and also how they relate to PNI and the spread of cancer cells outside of the Prostate.
I had wondered why with only a Gleeson 6, why there was this immediate need for me to have treatment other than active surveillance. I had pondered over all the risk factors, genetics, family history. But now, having read so many papers on PNI I can see that if PNI was found on biopsy ( and it was found in my pathology ), its an indication of a more aggressive cancer and a prognostic ( if that's the word ), for more urgent treatment. So I can see why they recommended and why I have surgery.
Thing now, is that I thought why the NHS consultant said if the cancer was on the right, he would not save the 'right' hand side nerves. I never asked him why? Was it related to PNI. All the articles that I have read recommend with PNI that they remove those nerves where there is potential for PNI spread. Now I had bilateral nerve sparing. If Mr D wasn't aware from Shrewsbury about the PNI, he wouldn't have been appraised of this risk factor.
So I have had nerve sparing, but this now gives me that worry about biochemical recurrence. Cancer was found surrounding nerves in the prostate and these nerves do pass through , outside the prostate, some to the sex nerves and elsewhere. Apparently, the cancer cells can use the nerves as a highway to escape. It might only be one or a couple. They can remain undetected for a number of years elsewhere in the body, it depends I suppose how many of the blighters may have escaped. Hopefully none. But if any have , I will always have that nagging doubt that the cancer will return one day. There is a short article here : http://www.ncbi.nlm.nih.gov/pubmed/10759668
The ED front does get me down. Its hard not to think about it each day. But the daily drugs, the pump exercise. Oh, to be awoken at night by some stirring , or that morning surprise men have. Well not yet, and nothing of notability that could reasonably engage in a penetrative adventure. We wait and see and must keep cheery. Two counseling sessions a month are helping and recently I attended the Prostate Cancer Survivorship Conference in Birmingham where this was discussed, as were Holistic Therapys that help sort the mental and emotional aspects out. ( Its not manly to admit, but I did break down in the car the other day when listening to a tune on youtube - the emotions drained out of me - had a facecloth available to erase traces of moisture before anyone could see ).
Bit of good news, GP is giving more Viagra and more Cialis - just a shame they cant be used more purposefully.
Enough for now.
Sitting in hotels at night on your own gives you time to think and to read. I must have read so many papers on the topic of PNI. What has now fascinated me is the nerve structures around the prostate and their relationship to the Erectile Dysfunction that's getting me down, and also how they relate to PNI and the spread of cancer cells outside of the Prostate.
I had wondered why with only a Gleeson 6, why there was this immediate need for me to have treatment other than active surveillance. I had pondered over all the risk factors, genetics, family history. But now, having read so many papers on PNI I can see that if PNI was found on biopsy ( and it was found in my pathology ), its an indication of a more aggressive cancer and a prognostic ( if that's the word ), for more urgent treatment. So I can see why they recommended and why I have surgery.
Thing now, is that I thought why the NHS consultant said if the cancer was on the right, he would not save the 'right' hand side nerves. I never asked him why? Was it related to PNI. All the articles that I have read recommend with PNI that they remove those nerves where there is potential for PNI spread. Now I had bilateral nerve sparing. If Mr D wasn't aware from Shrewsbury about the PNI, he wouldn't have been appraised of this risk factor.
So I have had nerve sparing, but this now gives me that worry about biochemical recurrence. Cancer was found surrounding nerves in the prostate and these nerves do pass through , outside the prostate, some to the sex nerves and elsewhere. Apparently, the cancer cells can use the nerves as a highway to escape. It might only be one or a couple. They can remain undetected for a number of years elsewhere in the body, it depends I suppose how many of the blighters may have escaped. Hopefully none. But if any have , I will always have that nagging doubt that the cancer will return one day. There is a short article here : http://www.ncbi.nlm.nih.gov/pubmed/10759668
The ED front does get me down. Its hard not to think about it each day. But the daily drugs, the pump exercise. Oh, to be awoken at night by some stirring , or that morning surprise men have. Well not yet, and nothing of notability that could reasonably engage in a penetrative adventure. We wait and see and must keep cheery. Two counseling sessions a month are helping and recently I attended the Prostate Cancer Survivorship Conference in Birmingham where this was discussed, as were Holistic Therapys that help sort the mental and emotional aspects out. ( Its not manly to admit, but I did break down in the car the other day when listening to a tune on youtube - the emotions drained out of me - had a facecloth available to erase traces of moisture before anyone could see ).
Bit of good news, GP is giving more Viagra and more Cialis - just a shame they cant be used more purposefully.
Enough for now.
I borrowed the above picture - cant remember the source, but when I do I will acknowledge the author and any copyright. It does help explain things and why you can have leakage without having positive margins.
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