tag:blogger.com,1999:blog-29116594078098249112024-03-13T07:11:53.117+00:00Journey of Life, Surviving Prostate Cancer, Obstructive Sleep Apnea, COPD and BronchiectasisProstate Cancer at 52 years - my journey PSA/Biopsy/MRI/Cancer .. the Open Radical Prostatectomy with bilateral nerve sparing (Mr Alan Doherty Surgeon) 98% Success - Now a Cancer Survivor .
2 years later, diagnosed with Obstructive Sleep Apnea, and Hypertension. Then end of 2016 - COPD plus Bronchiectasis
Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.comBlogger81125tag:blogger.com,1999:blog-2911659407809824911.post-79816239457531203102021-01-07T15:56:00.000+00:002021-01-07T15:56:29.060+00:00Pulmonary Rehab Latest - Link to Taskforce for LungHealth<p> Still no news about going on Pulmonary Rehab. It is now a year since I was told I was on the list for it. </p><p>I would imaging all the respiratory staff are really busy with Covid patients and looking after them at the moment so happy to wait and do my best on my own.</p><p>What keeps going through my mind though is that the thousands of COPD patients throughout the UK are now being ignored as the NHS is drowning in Covid. Its like Cancer and other life threatening chronic conditions - it is not going away - we are only going to get worse .</p><p><br /></p><p>Something needs to be done..</p><p>With that in mind I was interviewed by the Taskforce for LungHealth and they have pub;lished my COPD story here: </p><p><a href="https://www.blf.org.uk/taskforce/blog/i-was-not-told-that-i-had-been-diagnosed-with-copd-for-nearly-two-years">I was not told that I had been diagnosed with COPD for nearly two years | British Lung Foundation (blf.org.uk)</a></p>Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-66100412098216027362020-09-28T13:21:00.006+01:002022-12-05T13:43:01.270+00:002020 - COPD Update - Exacerbations and Flying<p> My last update in 2017 I had done Pulmonary Rehab. It was at this Pulmonary rehab that the physio/nurse confirmed from my hospital file that they new about my COPD back in 2015 when I was diagnosed with Sleep Apnea. At the time the Sleep Apnea and my heart condition was more important to treat. This was completed Feb 2017. Despite this I continued to struggle with just Salbutamol daily and Spiriva once a day. Multiple exacerbations both in 2018 and 2019. </p><p>2018 went to Mexico, Cancun. Within a day of being there I could hardly breathe and hardly walk more than 50 metres without rest. After 4 days of struggling I took my emergency steroids , prednisolone . These got me through the holiday and the flight home. </p><p>On my return I saw my GP about the problems I was having. My medication was changed and I had Forstair added to my daily drug intake. This was a life changer for me. 2019 saw a complete change with taking Spiriva ( changed to Braltus ), Forstair and Salbutamol. </p><p>End of 2019 I flew to Dominican Republic and coped really well with both the flight and the holiday compared to Mexico the year before. </p><p>Couple of things. </p><p>During 2019 I did a lot of flying with work. I had been to Japan and the USA. Now I was travelling weekly to Munich , Germany, flying out on a monday and returning on a friday. I noticed I was struggling and getting worse both breathing and walking during the year. For my holiday TUI asked for a fitness to fily letter. I contacted by GP who gave me a letter and charged me £20 for it. No tests !!</p><p>I started to monitor my flights to Germany and I noticed that my SATS were dropping in flight into the 80s and on a couple of flights into the 70s. I started to keep a record of these. </p><p>In January 2020 I had my annual spirometry at my GP and my FEV1 was now down to 37%. My GP put me forward for Pulmonary Rehab again. I also mentioned the problems flying. He wrote to my local hospital whose respiratory dept had me referred to Wolverhampton for a Fit To Fly Test. It transpires this is what I should probably have had done the year before.</p><p>It didnt take long during the fit to fly test. After 7 mins into the 20 min test my sats had plummeted and they stopped the test. I was told that I must have oxygen for flying. min 4lpm. Due to the amount of flying I do it was recommended I get myself a POC. </p><p>Then COVID hit ....... and we are all stopped. </p><p>Hospital Appts cancelled.</p><p>Decided to take the advice the consultant gave 5 years ago and took redundancy and have retired. </p><p>Finally - I learnt that with all the travelling about the Hidden Disability Scheme - Sunflower Lanyard. Made my travelling by rail and airplane so much easier.</p><p>Now have to try and find cheap insurance for holidays ... Ex Cancer, heart condition, Sleep Apnea, COPD, etc</p><p><br /></p>Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-86743033030293486452020-09-28T12:16:00.000+01:002020-09-28T12:16:05.524+01:00Looks like the Prostate Cancer is still clear - PSA still in Undetectable range<p> I haven't given an update since 2017. </p><p>Bringing things up to date - 2018 and 2019 my PSA was undetectable. In 2018 I had the PSA test in Birmingham at The Priory, but this was a long drive when I could get it done locally and through the NHS. The NHS now do an ultra sensitive test so I am happy with that.</p><p>To be fair, nothing would be done unless a couple of tests show detectable and are above 0.2 so as I am below this and classed as undetectable I have chosen to use my GP for my annual tests.</p><p>So I am 7 years clear.</p><p>With COVID and the lockdown , I cant see me having my 2020 test until 2021 , but i am comfortable with that. </p>Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com2tag:blogger.com,1999:blog-2911659407809824911.post-72038869079908848502017-06-23T16:38:00.000+01:002017-06-23T16:38:01.514+01:00Latest updates - HBA1c , COPD When I was diagnosed with Prostate cancer I remember reading an article that said that if you overcome the cancer then you had to watch out for your heart and diabetes. The problem I have found is that you end up with a catalog of problems that leads to a spiraling decline in your health.<br />
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My COPD has had a significant impact, am really struggling at the moment to breath and using my inhalers a lot. I have also had multiple exacerbation's in the past two months that have led me to having to take anti biotics and steriods. Am certain the steroids have had an impact on my weight and as a knock on to my blood glucose levels.<br />
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I have completed pulmonary rehabilitation and now have just completed 12 weeks of fitness4life at the gym in Telford&Wrekin. These are supervised cardio-respiratory sessions. Am about to sign up for a membership to continue these as I have to get my exercise under control to enable me to breathe easy. But also this has to be done to fight my weight and help with my diet.<br />
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Have just had my annual blood test for HBA1c as I am high risk for Diabetes. Last year it was 46 (2016), this year (2017) it is 47. I have already been suffering foot sores that could have been really serious. I am getting numbness in one foot and toes. I was hoping with the work in the gym and cutting down on various foods that this HBA1c would have gone down not up. So I am in the pre-diabetic range. Diet and exercise is the only way forward. Its hard work with having COPD.<br />
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I have been given a Peak Flow meter for the COPD so I can measure my flow to see what my best is so i can detect when i am bad and heading toward an exacerbation. On a good day i am scoring 350 to 400 on the meter. A healthy person my age and height should be in the 600s. On my bad days and currently with this heat and pollen / air quality I am scoring 250 if I am lucky. Lots of blockage in my lungs.<br />
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I dont seem to be improving. Time will tell however. If I can do more exercise. My FEV1 was 53% , hopefully i can make improvements in the next 6 months so i dont drop below 50% into Severe.<br />
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Until the next update....<br />
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Breathe Easy everyoneEddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-22454022038191610912017-02-08T18:50:00.004+00:002017-02-08T18:50:47.564+00:00COPD and Bronchiectasis - what is it all aboutSo my blog started about my prostate cancer. This seems to have been the catalyst for problems to start that I have never had before.<br />
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People have bucket lists of what they want to do before the die. I seem to be starting to collect a bucket list of illnesses.<br />
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Considering that until about 2012 with the cancer diagnosis i had hardly been ill in my whole life and hadnt had an admission into hospital, all that has changed.<br />
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I feel like I am a car thats starting to fall to bits. I have a dressing table full of medication , tablets for the morning, tablets for the evening, tablets for bedtime, tablets for those special times . Give me a shake and I probably rattle.<br />
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So, this post, COPD and Bronchiectasis. C.O.P.D. Chronic Obstructive Pulmonary Disease , an umbrella term for multiple diseases that impact breathing. The British Lung Foundation have lots of info at https://www.blf.org.uk/support-for-you/copd . Bronchiectasis is where the lungs get damaged - http://www.nhs.uk/conditions/C/Pages/Introduction.aspx<br />
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It seems I have both of these. In October 2016 I was told by my GP after having a spirometry test that my FEV1 or lung function was 53%. I have just had a further review, Feb 2017 and been told that it is now 2.06 or 54% so roughly the same. Since october I have had access to a Ventolin Inhaler and also an inhaler called Spiriva. The Spiriva is a preventer which slows down deterioration of my lungs, minimizing what they call exacerbation's or flareups that can cause more damage. I have also had my flu jab and a pneumonia jab. The fact that my GP got me on these has probably arrested potential deterioration of my lungs. Now as a COPD patient I am also undertaking Pulmonary Rehabilitation which will also help me,<br />
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Am a little disappointed as it seems that back in march 2015 the hospital did spirometry tests on me. Those results shown in the graphic below would seem to indicate that I had COPD back in 2015 - but no one told me about it. It also seems that at the same time the found that I had Bronchiectasis.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbQvu1Ba1ctJfEkqA3a_jkpNfQGCJUqUO7PrKbwMPmrVZxqK_TsheczEdDAMBA1nTmHc_1fiMIRo7oRhWjZ2ruBdvAHwrwEYSiY3L4gMzcR6_NnDHyZqPQQmam0CPrqQBiSGt3YnaHHC8/s1600/2015-03-23+14.24.59+Spirometry+PRH.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbQvu1Ba1ctJfEkqA3a_jkpNfQGCJUqUO7PrKbwMPmrVZxqK_TsheczEdDAMBA1nTmHc_1fiMIRo7oRhWjZ2ruBdvAHwrwEYSiY3L4gMzcR6_NnDHyZqPQQmam0CPrqQBiSGt3YnaHHC8/s320/2015-03-23+14.24.59+Spirometry+PRH.jpg" width="192" /></a></div>
Well at least now I am under monitoring and treatment for these conditions. I have read lots of good advice on forums that say i should be able to live many years managing this condition. There does have to be some drastic lifestyle changes though, diet, weight, exercise. <br />
<br />Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com1tag:blogger.com,1999:blog-2911659407809824911.post-84049649358204529562017-02-08T18:27:00.002+00:002017-02-08T18:27:41.982+00:004 Years on - Cancer Free - PSA still undetectableFor those following the blog I had my PSA tested before Christmas 2016 and I am still cancer free, my PSA being undetectable at below 0.01 with the ultra sensitive test. Agreed with consultant to continue to take the tadalafil and sidenafil for ED . Am continuing to attend a monthly support group that is fabulous as we can talk through the mental impact of this surgery/cancer that still plays on the mind. Does tend to get me down a lot what has happened at my age. Tend to keep thinking about it.<br />
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Other issues to worry about now though as I have problems with my breathing that they have finally confirmed as COPD. So its, get over cancer and now fight the fight to keep my lungs working.<br />
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<br />Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-66147203237367499682016-10-30T07:25:00.001+00:002016-10-30T07:26:26.295+00:00COPD and left Paralized Diaphragm <p dir="ltr">The night before I had surgery for ulna nerve decompression and transposition plus carpal tunnel I had phone call from GPS. My latest spirometry confirmed sitting lung function of 53%. He has diagnosed me with stage 2 COPD. This on top of my raised left hemi diaphragm and left Paralized Diaphragm makes it tough to breath especially walking a while. Cpap helps a lot at night. Ventolin doesn't help enough so he has put me on Spiriva 18 Mcg daily. All this gave a huge problem the following day as I was having surgery at the Nuffield and it doesn't have all the right facilities if I had major respiratory failure. I have been told now by my anesthetist to have future surgeries at nhs or facilities with such care capability. </p>
<p dir="ltr">Spoke to my ortho surgeon and he said I need to see specialist about the diaphragm. The degeneration c3 c4 c5 may have caused this as that it where the Phrenic nerve is that controls left and right diaphragms. Have already lost my left. Don't want to lose the right . </p>
<p dir="ltr">Will update blog when I find out more.</p>
<p dir="ltr">In meantime. Now have slow recovery from ulna nerve surgery.<br>
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Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-8136174583542336742016-10-26T17:20:00.000+01:002016-10-26T17:20:03.498+01:004 Years On since SurgeryWell its 4 years now since my surgery and time for my PSA test. Its going to have to be delayed until November as I have to have surgery. <br />
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Those problems I had with my neck and nerves following the Prostatectomy have come back. A new MRI was done and electrical tests. The MRI has shown I have problems from C3 to C7 , also I have problems in both arms and hands but my left arm is the worst. Before they can look at doing anything with the neck and C Spine I have to have Ulna Nerve Decompression of the left arm and Carpal Tunnel of the left hand. This is taking place this week.<br />
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So PSA will have to wait a few weeks.<br />
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This has also got me thinking and doing a lot of reading. I still have the paralysed left diaphragm and no one has explained what has caused this. All they have said is its not Lung cancer. However I am now reading that Phrenic Nerve damage can cause this - that's in the neck. Also compressed nerves caused by secondary cancers can cause this. The MRI didn't show cancers but I will mention all this to my specialist when I see him next month - it did make me think about the Perineural Invasion of the Prostate that was on my biopsy, but this would be hugely rare at 4 years post surgery. Also going to have a word with GP about this - I sense a visit to a respiratory consultant. Am concerned that the degeneration of the spine has got worse in 4 years. If this is the phrenic nerve and then the other right nerve gets impacted then I will be in a medical emergency scenario breathing wise. Not too good. Need to get to the bottom of it all.<br />
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Life goes on. Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-37907585652234451612015-11-30T23:13:00.001+00:002015-11-30T23:14:08.530+00:00If i was a Car<p dir="ltr">So if i was a car and i had a problem my owner would take me to the garage, explain the symptons, diagnose the problem and fix it. </p>
<p dir="ltr">I am a human body, a more advanced car. My owner has read leading whitepapers from respected research institutes. My nhs gp treates me like a primary school child.</p>
<p dir="ltr">Totally fed up with nhs primary care in UK. Need private primary care and then i can sue if they.get things wrong.</p>
Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-24442041053504461022015-11-16T22:44:00.001+00:002015-11-16T22:45:09.532+00:003 Years Cancer Free<p dir="ltr">Results of my ultra sensitive PSA test is in today and i am still undetectable. That is 3 years cancer free. Discussion about Statins and Heart meds impacting Libido and Sexual functions. Going to speak with GP about possibility of changing statins. Maybe diet change will help. </p>
Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0Shropshire, null52.586483 -2.7037501tag:blogger.com,1999:blog-2911659407809824911.post-41206443855552928572015-06-29T09:47:00.001+01:002015-06-29T09:47:19.671+01:00Getting over ED and now have Heart/Lung issuesEverything is looking good from a Prostate Cancer perspective. No incontinence and the Tadalafil and Sildenafil have aided the erectile recovery and it looks like the nerves are getting better.<br />
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Libido has taken a nose dive though and lost all interest. I suspect I am being impacted by medication I have been given for my heart and lungs.Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-82320056266716830492014-11-28T17:58:00.002+00:002014-11-28T17:58:23.876+00:00Doesnt rain but it pours - ColonoscopyBeing 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. <br />
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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.<br />
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Other shocker was my weight: need to trim down. 117.8 kg with a BMI of 35.6 is well too heavy.<br />
Must get out more or re-join the gymEddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-69798776517942589592014-11-28T17:51:00.003+00:002014-11-28T17:51:51.321+00:00Cancer / 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.Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-24699326093943867212014-07-21T16:28:00.002+01:002014-07-21T16:32:58.106+01:00Pins & Needles, Numbness, Burning feet and legs, Lower Back pain - MRI July 2014Last 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.<br />
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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.<br />
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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. <br />
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiys5I4xiMogLNH3PeasT8iHY5gf0lbVw0l2V65ygNYmpX9w_-it9FtLLT5bg-BenVn0vJRXsO_ok7xxiFItU0UYnDZjxkWCXLjQ6PWDpjgSrktz5ZOwF5tXrp4I2QQjP0gm3FdGxlAj1M/s1600/3D+FSEIR+Tspine.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiys5I4xiMogLNH3PeasT8iHY5gf0lbVw0l2V65ygNYmpX9w_-it9FtLLT5bg-BenVn0vJRXsO_ok7xxiFItU0UYnDZjxkWCXLjQ6PWDpjgSrktz5ZOwF5tXrp4I2QQjP0gm3FdGxlAj1M/s1600/3D+FSEIR+Tspine.png" height="228" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">T Spine showing bulge on bottom disc pressing spinal chord. Also mystery dot showing through chord</td></tr>
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYmfwi1yuR403Z4rDiGLId3XvMo1qkEbKZqLsNgRkKFobp6sLv4Gy6w8p2iAotcRvIgrnZu7HWyLnHLHHKjruHDUv-2zso2bhCwTYH6uhySgcXtWife-tvuYrqzFoWuVR5HY-GqBETkzE/s1600/MRI_MR_SAG_STIR_tspine1.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYmfwi1yuR403Z4rDiGLId3XvMo1qkEbKZqLsNgRkKFobp6sLv4Gy6w8p2iAotcRvIgrnZu7HWyLnHLHHKjruHDUv-2zso2bhCwTYH6uhySgcXtWife-tvuYrqzFoWuVR5HY-GqBETkzE/s1600/MRI_MR_SAG_STIR_tspine1.png" height="228" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Closer view of bulging fluid pressing on spinal chord</td></tr>
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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. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaj11J0ndmQWj1quTd6CYPIST5PYKqC4yCV5IL3JjST8vkM9ftiUJ04dLWWaXtEMYL7J1Spc2HNEwX9VVaB1U0HG0UgOPrTN1BHmLm0DAogGUpM2ejlxyPHTkWxhT443vvXDGvyZ1nLCY/s1600/MRI_MR_SAG_STIR_tspine.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaj11J0ndmQWj1quTd6CYPIST5PYKqC4yCV5IL3JjST8vkM9ftiUJ04dLWWaXtEMYL7J1Spc2HNEwX9VVaB1U0HG0UgOPrTN1BHmLm0DAogGUpM2ejlxyPHTkWxhT443vvXDGvyZ1nLCY/s1600/MRI_MR_SAG_STIR_tspine.png" height="228" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Whole of T Spine in view - right at top is C6/C7 which had problems last year</td></tr>
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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.<br />
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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.<br />
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<tr><td class="tr-caption" style="text-align: center;">L Spine showing at base, L5/S1 bulge</td></tr>
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7ypFxa60W6pKRwShZfWdBYJEQOUaL1MBljRRFQZBgbA3oiirqlW6Fu2HgmggI1MITn3quN6LtQGs7lsVj2ieOsFmUOx3OlGTvkkGixjFsC9I4JV9bO8dezxRSrRl1IpI7YVKnaoDguPc/s1600/Lumber_eddie.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7ypFxa60W6pKRwShZfWdBYJEQOUaL1MBljRRFQZBgbA3oiirqlW6Fu2HgmggI1MITn3quN6LtQGs7lsVj2ieOsFmUOx3OlGTvkkGixjFsC9I4JV9bO8dezxRSrRl1IpI7YVKnaoDguPc/s1600/Lumber_eddie.jpeg" height="228" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">L Spine Sagittal View T2 Contrast - Disk Degeneration?</td></tr>
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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.</div>
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Am only presuming that nothing can be done about the above to correct the wear. </div>
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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.</div>
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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:</div>
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<br />Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-26861029794548835872014-07-03T11:48:00.000+01:002014-07-03T11:48:54.714+01:00Genetic 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. <br />
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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.<br />
<br />
What is does say which is key for me <span style="color: #0b5394;">" When thinking about who is at risk of having the mutation in the</span><br />
<span style="color: #0b5394;">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." </span>That to me is the crux as my daughter and son and their children , when they have them, could be at risk.<br />
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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 <span style="color: #45818e;">"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</span><br />
<span style="color: #45818e;">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</span><br />
<span style="color: #45818e;">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."</span><br />
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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.<br />
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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.<br />
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To get the genetic referral on the NHS you have to have a family history of cancers. Research this week established:<br />
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<b><u>Mothers side:</u></b><br />
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Grandmother had breast cancer<br />
Mother had Breast Cancer<br />
Sister had breast cancer ( early onset, primary and secondaries, bilateral and died at 49 yrs )<br />
An Uncle(Mothers brother) had Bowel Cancer<br />
An Uncle(Mothers brother) had esophagus cancer<br />
Grandfather , unsure what cancer he had - still investigating<br />
An Uncle(Mothers brother) had lung cancer<br />
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<u><b>Fathers side:</b></u><br />
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Father had Prostate Cancer (advanced, through bones etc.)<br />
Grandmother had Breast Cancer<br />
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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.<br />
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<br />Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-79995674135914166922014-07-03T11:09:00.000+01:002014-07-03T11:12:18.677+01:00GP Check up and discussion of possible surgery problemsHi 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.<br />
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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.<br />
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{ 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 }<br />
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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.<br />
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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!! <a href="http://www.prostrcision.com/qa/radical-prostatectomy">http://www.prostrcision.com/qa/radical-prostatectomy</a> Question 88.<br />
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Not that I am worried .... but it gives me a nagging doubt as the bulk of my tumours were at the Apex.<br />
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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. <br />
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Cured Cancer === now a fatty === time for actionEddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-51252478227959185202014-03-11T22:41:00.001+00:002014-03-11T22:55:47.707+00:00That old Chesnut Perineural Invasion & Feelin Depressed over EDIts 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). <br />
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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.<br />
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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.<br />
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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. <br />
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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 : <a href="http://www.ncbi.nlm.nih.gov/pubmed/10759668">http://www.ncbi.nlm.nih.gov/pubmed/10759668</a><br />
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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 ).<br />
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Bit of good news, GP is giving more Viagra and more Cialis - just a shame they cant be used more purposefully.<br />
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Enough for now. <br />
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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.</div>
Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-19250100979156430372013-10-07T23:15:00.001+01:002013-10-07T23:15:07.833+01:00Almost 12 months since my Prostatectomy - Depression and Side Effects - the silent enemy withinIts been several months since my last blog entry and things have been looking up in my life. Have got myself deeply involved in my work, got a new role with the company that I love, and have spent a wonderful time volunteering with International Scouts in Belgium. Also had two weeks working hard in Australia, the first time I have been to that side of the world. All told this had taken my mind of what's happened to me over the last year.<br />
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I hadn't realized really what impact prostate cancer has had on me, the diagnosis, the change in my life from pre diagnosis to post diagnosis, the treatment and how I am living my life now , to my future life. Not until the weekend when I attended a support meeting for men who are going through this.<br />
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At the meeting we were asked to recount our lives pre cancer, during diagnosis, post treatment and how we saw the way forward. Despite being a methodical person, always analyzing things, I hadn't really gone to this level of analysis. Sat there in a room with other guys and having agreed to be wired up as this was for medical research I really relived everything, not just the last year, but my whole life. Only men can really know what I am driving at , and also only men who have gone through or are going through PCa and the side effects. <br />
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From the happiness of describing 52 years of my life, the ups and the downs , to the shock of the diagnosis, sitting in a room alone with a clinical nurse being told you had cancer - the NHS consultant didn't even have the balls to tell me himself. Sat crying in a carpark, then plucking up the courage to phone my family and tell them. It was at this point of reliving this that all those emotions started to pour from me again. I couldn't believe that here I was , with complete strangers , crying. The elation of finding a private consultant, Alan Doherty who gave me the courage to sort myself and the cancer out and gave me hope - this helped steady my nerves. <br />
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I was then asked how I felt moving forward and the impact of erectile dysfunction, loss of libido and my identity. My identity - am I a man - I don't know anymore. Physically, I probably look the same to the whole world, but inside I don't feel that. I have lost something 2/3rds ( if I am lucky ) through my life that can never come back. There is something about the male sexual identity and how you feel emotionally that drives you on each day. That has gone. Is that what makes me sad when I am alone. All these thoughts of the change to my sex life and how this relates to by sexual identity and my gender identity came flooding back and caused me another round of shaking and tears. Maybe its because I have studied 'identity' as part of the training I do for diversity for the Scout Association which really made me think and brought things on on Saturday. It made me think of what life has in store for me and my partner in life. <br />
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When you choose your treatment , you look at the priorities and you can be quite carte blanche at sorting the cancer, sorting incontinence and then sorting erectile dysfunction.<br />
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I have been lucky in that my operation to remove the cancer has gone well. I have worked hard and the incontinence is sorted - though I concentrate every time I make sudden movements or sneeze or cough to make sure I don't wet myself - especially in public. <br />
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The erections are not there, I take the tablets daily, I use the pump but I am a failure at everything that goes with this. The emotions have gone. You start the act and then it turns to failure and in the end you give up. After a while you don't try anymore, its too embarrassing to be that failure. There is a disconnect between the brain and the nerves that control things. There are signs of life but will it come back. They say it will, but its not the same. It never will be - no matter what the medical people say. Medical people may have done everything they can to cure the cancer but the mental scars of what's happened can never be healed. I try to block out these thoughts, but when alone with nothing to take you mind of things, you reminisce of your past life and the good times, the sad things is that I can see them now, but the feelings I had during those times are lost. <br />
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It was an emotional uplift Saturday, being able to talk through all this with people who understood. These were not medical people, physcosexual counselors or other welfare people. They were others who had been or were going through the same emotional turmoil I am going through. And do you know - days afterwards - I feel so much better as I had those great guys to talk to.<br />
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So NHS and other medical facilities - drugs and surgery are not everything - we need the aftercare, not weeks after, but continued care during the difficult times whilst we deal with the side effects.<br />
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..... 2 weeks and I go and get my 12 month PSA test post op........<br />
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I have my work and my work keeps me going ... looking forward to talking at the support meeting in November .. it helps .. just wish there was more support locally.Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-54056847135091560862013-08-14T07:29:00.001+01:002013-08-14T07:29:23.360+01:00Psa Anxiety<p dir="ltr">Had a letter the other week confirming my appointment to see my NHS consultant next week. Havent seen him for about a year since he diagnosed me with cancer. I suppose its all about records keeping. For the past few months i have put all thoughts of what happened and what could happen behind me. Now the thought of a psa increase is playing on my mind. They havent told me to have a pre meeting blood test so i tried to phone his secretary. Typical NHS uncontactable. Will wait and see what happens. </p>
Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com2tag:blogger.com,1999:blog-2911659407809824911.post-59997326475044467522013-06-24T11:11:00.000+01:002013-06-24T11:11:10.683+01:00Erectile Dysfunction still a problem despite VED and Cialis - messes your head and emotionsPeople 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.<br />
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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. <br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com1tag:blogger.com,1999:blog-2911659407809824911.post-55999260558451544472013-06-24T10:38:00.001+01:002013-06-24T10:38:46.446+01:00Still getting internal sorness - must be my weight gain - have to lose some weightBeen a few weeks since my last posting so its time for an update. <br />
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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. <br />
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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.<br />
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Still mustn't moan or cry wolf, time to move on with life.<br />
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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. <br />
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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. Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-60797390962955503132013-04-20T14:48:00.002+01:002013-04-20T14:48:26.967+01:00Perineural Invasion - new article published and something to make me thinkI was monitoring twitter the other day and spotted the following article <a href="http://advancedprostatecancer.net/?p=3750" target="_blank">Perineural Invasion On Prostate Biopsy: Does It Mean that I Have Advanced Prostate Cancer?</a><br />
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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. <br />
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"Since having PNI on final pathology clearly and negatively affects prognosis its presences should influence the treatment decisions."<br />
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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 ).<br />
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Finally this quote sums it up " <strong>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. "</strong>Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-31283715926457187212013-04-20T14:36:00.000+01:002013-04-20T14:36:05.401+01:006 Month Post Open Radical Prostatectomy and things going wellI had my 6 month check up with Mr Doherty at the Birmingham Prostate Clinic last week and all things are looking good.<br />
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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. <br />
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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.<br />
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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. <br />
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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.<br />
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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.Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-29145763743010896852013-03-27T14:13:00.002+00:002013-04-20T14:56:19.724+01:00Approaching 6 Months since Open ProstatectomyHi everyone<br />
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Its been a couple of months so I thought it about time that I gave everyone an update on my recovery.<br />
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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.<br />
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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.<br />
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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 .<br />
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One thing I need to ask tomorrow is about the pains in my lower spine - notice this when hill walking. <br />
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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.<br />
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Will post an update after tomorrow.<br />
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Bye for now.<br />
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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.<br />
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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.<br />
<br />Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0tag:blogger.com,1999:blog-2911659407809824911.post-23413767959182899642013-01-21T15:14:00.002+00:002013-02-04T11:48:50.855+00:00All clear ( or as near as ) after 3 month PSA TestVisit to the BPC at The Priory to see Mr D. <br />
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.<br />
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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 )<br />
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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. <br />
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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.<br />
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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. <br />
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More exercise will help with all these niggling pains.<br />
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So, great day really ...<br />
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... 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.Eddiehttp://www.blogger.com/profile/00814014955790751655noreply@blogger.com0