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This is my story for what it's worth.

User
Posted 29 Mar 2015 at 22:13

I don’t know if my story will help anyone here, but I hope it shows that caught early enough this frightening illness can be dealt with, resulting in a successful conclusion. I am more than happy to answer any questions from anyone who reads it,.

In July last year I went to the doctors for a cholesterol test. The next day I got a phone call from the nurse to say that she also did a well man check which included a PSA test. the result was high for my age (64) at 8.5, and she asked me to go for a second test for confirmation. This result was 8.9.
I made an appointment with the Doctor who did a DRE. This showed a slightly enlarged prostate that was smooth. He was undecided wether to monitor me or refer me to a consultant. On balance to be on the safe side he decided to refer.

Two weeks later a visit to the consultant confirmed the doctors findings. I was offered monitoring or an MRI scan or a biopsy. When I asked what he would go for he said MRI scan, and so this is what I asked for. Three weeks later I had the scan, and two weeks after that another consultation with a different consultant. the MRI had shown some suspicious areas. Again I was offered monitoring but when I asked the question again, “what would you do?” the answer was a biopsy . Another two week wait and I had the biopsy as a day patient. This was done under a general anaesthetic and caused no pain or problems in any way. Another two week wait and an appointment with another consultant confirmed cancerous cells with a Gleason score of 3/4. The MRI scan had suggested that the cells were contained in my prostate. I was offered time to think about what I wanted to do, and at another appointment with another consultant, a surgeon this time, I was given the following options. Radiotherapy every day for I think it was seven weeks, Brachytherapy, which is the isotope implant method, or nerve sparing surgery via laparoscopy or open surgery. again I was given time to think about it. I found the specialist nurse a great help and had a long chat with her to help decide what to do.

Based on the fact it was believed to be contained and the risk of double incontinence five years down the line from radiotherapy, I elected for open nerve sparing surgery. I figured if it was contained then get rid of the thing, and the more the surgeon could see, the better chance he had of sparing nerves. Surgery carries a 55% chance of impotence and 95% of men are urinary continent within a year.

So, another trip to the consultant surgeon where I elected for surgery. Before that can happen though I had to have a bone scan for metastases. A suspicious area was found which need a chest Xray. This showed the operation could go ahead, and another week or so for that and another appointment and the decision for surgery was a go.

I had the operation on December 30th. It was about a five hour operation. With medication I had little pain or discomfort. and was discharged from the ward after three days. The biggest discomfort was constipation, particularly as i was very reluctant to stress the wound or internal stitches. I was fitted with a catheter during the operation which was held in place by a cord that was brought out through my bladder and abdomen wall to a pad that prevented it from being pulled back by the catheter. Unfortunately I got a chest infection while in the hospital and the subsequent coughing was agony as it pulled on the wound and the catheter restraint. A trip to A&E and antibiotics sorted the infection. Showering was a two person job but with care it can be accomplished. It also took a great deal of help from my wife to get the surgical socks on and off. The wound took time to heal. It was still leaking after a couple of weeks, after which I had a salt bath every night and after about a further week it was healing well.

At first I didn’t want to eat. My wife finished up standing over me whilst I drank soup and ate a cold chicken leg. It took a week for my appetite to start to return and after three weeks I was back to normal. Prunes and prune juice helped the constipation, but I recently found the benefit of Greek yoghurt which helps more evenly and so I don’t have to suffer the prunes.

The sight of ones penis shrunken so much that it hardly appeared was worrying, but after three weeks and post catheter removal i started to get some mild growth, and after five weeks I could get 80 % of an erection. I have since been taking Cialis which allows a full erection and I am now able to make love to my wife and achieve an orgasm.

I had a PSA test three weeks ago which showed my PSA was so low that it was unmeasurable, so I guess I have been cured.

Just as a recap the hard things I found were, making a decision as to what treatment to have, the constipation, the catheter, (don’t be surprised if you leak around the catheter, or if there is blood in your urine, it’s normal though it does feel a bit strange), and eating.

Three months on from the operation I feel well and energised and am back at work.

Again if anyone has any questions on what one can expect then please post here or email me.

The operation was carried out by a very professional, skilled, and caring surgeon who works with a great team from Scunthorpe hospital.

Please remember there is always hope. Cancer is not necessarily a death sentence.

Finally I must mention that I believe the main reason for my speedy recovery is the wonderful support and care I have had from my wife. It is easy to forget that it can be just as difficult if not more so for those whom we love.

 

User
Posted 29 Mar 2015 at 22:13

I don’t know if my story will help anyone here, but I hope it shows that caught early enough this frightening illness can be dealt with, resulting in a successful conclusion. I am more than happy to answer any questions from anyone who reads it,.

In July last year I went to the doctors for a cholesterol test. The next day I got a phone call from the nurse to say that she also did a well man check which included a PSA test. the result was high for my age (64) at 8.5, and she asked me to go for a second test for confirmation. This result was 8.9.
I made an appointment with the Doctor who did a DRE. This showed a slightly enlarged prostate that was smooth. He was undecided wether to monitor me or refer me to a consultant. On balance to be on the safe side he decided to refer.

Two weeks later a visit to the consultant confirmed the doctors findings. I was offered monitoring or an MRI scan or a biopsy. When I asked what he would go for he said MRI scan, and so this is what I asked for. Three weeks later I had the scan, and two weeks after that another consultation with a different consultant. the MRI had shown some suspicious areas. Again I was offered monitoring but when I asked the question again, “what would you do?” the answer was a biopsy . Another two week wait and I had the biopsy as a day patient. This was done under a general anaesthetic and caused no pain or problems in any way. Another two week wait and an appointment with another consultant confirmed cancerous cells with a Gleason score of 3/4. The MRI scan had suggested that the cells were contained in my prostate. I was offered time to think about what I wanted to do, and at another appointment with another consultant, a surgeon this time, I was given the following options. Radiotherapy every day for I think it was seven weeks, Brachytherapy, which is the isotope implant method, or nerve sparing surgery via laparoscopy or open surgery. again I was given time to think about it. I found the specialist nurse a great help and had a long chat with her to help decide what to do.

Based on the fact it was believed to be contained and the risk of double incontinence five years down the line from radiotherapy, I elected for open nerve sparing surgery. I figured if it was contained then get rid of the thing, and the more the surgeon could see, the better chance he had of sparing nerves. Surgery carries a 55% chance of impotence and 95% of men are urinary continent within a year.

So, another trip to the consultant surgeon where I elected for surgery. Before that can happen though I had to have a bone scan for metastases. A suspicious area was found which need a chest Xray. This showed the operation could go ahead, and another week or so for that and another appointment and the decision for surgery was a go.

I had the operation on December 30th. It was about a five hour operation. With medication I had little pain or discomfort. and was discharged from the ward after three days. The biggest discomfort was constipation, particularly as i was very reluctant to stress the wound or internal stitches. I was fitted with a catheter during the operation which was held in place by a cord that was brought out through my bladder and abdomen wall to a pad that prevented it from being pulled back by the catheter. Unfortunately I got a chest infection while in the hospital and the subsequent coughing was agony as it pulled on the wound and the catheter restraint. A trip to A&E and antibiotics sorted the infection. Showering was a two person job but with care it can be accomplished. It also took a great deal of help from my wife to get the surgical socks on and off. The wound took time to heal. It was still leaking after a couple of weeks, after which I had a salt bath every night and after about a further week it was healing well.

At first I didn’t want to eat. My wife finished up standing over me whilst I drank soup and ate a cold chicken leg. It took a week for my appetite to start to return and after three weeks I was back to normal. Prunes and prune juice helped the constipation, but I recently found the benefit of Greek yoghurt which helps more evenly and so I don’t have to suffer the prunes.

The sight of ones penis shrunken so much that it hardly appeared was worrying, but after three weeks and post catheter removal i started to get some mild growth, and after five weeks I could get 80 % of an erection. I have since been taking Cialis which allows a full erection and I am now able to make love to my wife and achieve an orgasm.

I had a PSA test three weeks ago which showed my PSA was so low that it was unmeasurable, so I guess I have been cured.

Just as a recap the hard things I found were, making a decision as to what treatment to have, the constipation, the catheter, (don’t be surprised if you leak around the catheter, or if there is blood in your urine, it’s normal though it does feel a bit strange), and eating.

Three months on from the operation I feel well and energised and am back at work.

Again if anyone has any questions on what one can expect then please post here or email me.

The operation was carried out by a very professional, skilled, and caring surgeon who works with a great team from Scunthorpe hospital.

Please remember there is always hope. Cancer is not necessarily a death sentence.

Finally I must mention that I believe the main reason for my speedy recovery is the wonderful support and care I have had from my wife. It is easy to forget that it can be just as difficult if not more so for those whom we love.

 

User
Posted 30 Mar 2015 at 01:18

It is really great to read someone's good news story Paul but important not to give information that could confuse new members that come along after you. You won't know for sure that you are 'cured' (which actually is remission not cure) until you have had an undetectable PSA for 5 years - official remission comes at the 10 year point. My husband had open RP but it came back 2 years later needing salvage treatment and my dad has had 13 years of gloriously undetectable life but it is back now.

Of course, for the many members here who were diagnosed late, cancer is a death sentence.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 30 Mar 2015 at 01:18

It is really great to read someone's good news story Paul but important not to give information that could confuse new members that come along after you. You won't know for sure that you are 'cured' (which actually is remission not cure) until you have had an undetectable PSA for 5 years - official remission comes at the 10 year point. My husband had open RP but it came back 2 years later needing salvage treatment and my dad has had 13 years of gloriously undetectable life but it is back now.

Of course, for the many members here who were diagnosed late, cancer is a death sentence.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Mar 2015 at 06:37
Paul

my husband was one of the unfortunate ones Lyn mentions, however I have to say your post makes me want to rejoice for you and your wife. In fact I rejoice for anyone with a better outcome than the one we had.

I just wish your story was the normal and one that everyone could experience.,, maybe one day?

Be thankful and make sure you spoil that lovely wife who has given you so much support and love, some do not understand so you are one exceptionally lucky Man.

xx

Mo

User
Posted 30 Mar 2015 at 08:28

Good to read a success story Paul.

dave

User
Posted 30 Mar 2015 at 08:44

A great post Paul and very encouraging for new members.

It's easy for the patient and family to initially think "Well that's it then" when they are first diagnosed.

Some on here are not as fortunate as yourself, but I'll bet they'll still rejoice with you.

Thank you for a clear, concise and helpful post.

Best Wishes

We can't control the winds - but we can adjust our sails
User
Posted 30 Mar 2015 at 09:14

Very positive, Paul. Well done on your recovery, and also to the nurse who arranged the extra PSA test. I still wonder whether these should be done as a matter of course for all men over 50 every 2 years.

Paul

Stay Calm And Carry On.
User
Posted 30 Mar 2015 at 14:24
I'm really pleased to see this Paul, what a great outcome. It's a very good to read a positive story, especially for men who are diagnosed at an early stage, they need this kind of story to show them it isn't all doom and gloom.

Delighted things have worked out for you. I know it's true that you need to wait for five years of very low PSA resulta, but lovely to see you enjoying life and appreciating your wife.

Kindest regards

Allison

User
Posted 30 Mar 2015 at 17:07

Hi Paul,

Thank you for sharing your story from which it appears you have a very good chance of a cure, though as has been mentioned, it is much too soon to take this for granted. An early diagnosis and appropriate timely treatment are indeed the key to best chance of cure.

Hope you continue to do well.

Barry
User
Posted 30 Mar 2015 at 20:40
Congratulations Paul!

Wishing you all the best.

Edited by member 30 Mar 2015 at 20:42  | Reason: Not specified

User
Posted 31 Mar 2015 at 02:12
A great outcome. Good luck for a long, healthy future. Grea
User
Posted 13 Apr 2015 at 09:03

Hi Paul,

 

Thanks for the opportunity to read your story. I was diagnosed with localised PC 4 weeks ago and next Monday (20th April) I am going in for the robotic surgery. You have answered a lot of queries and major concerns about post op, e.g. pain, incontinence, sex life.

I wish you all the very best and thanks again for the insight.

 

George 

 
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