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My story to date

User
Posted 24 Sep 2019 at 16:19

This is my blog copied and pasted as requested - 3 personal posts to date - you can see the related photos at https://aprostateblog.blogspot.com/

Post 1

Hi and welcome to my new blog, this week on the 9/9/19 I have been prescribed with prostate cancer and have decided to create a blog for anyone in a similar position to learn from.


The journey to the operation

Whilst on holiday I noticed the frequency with which I was urinating and the urgency was increased significantly and resolved to see the doctor on my return. This I duly did, and the doctor actually said I had done exactly the right thing and he would undertake tests to make sure everything was ok.

So initially I had blood tests and urine samples taken. The latter did not highlight anything but I received a call from the doctor saying he wanted to talk to me about my blood test.

I arrived at the surgery and the doctor explained I had a PSA level of 3.7 when I should be less than 3 for my age and on that basis he would like me to have an MRI which I agreed to. To be honest I did not consider it to be an issue but in hindsight should of!

So the MRI was completed and then I was invited back to discuss the results, which had shown two areas of concern and they wanted to undertake a biopsy.

I won’t mind admitting I was expecting to suffer through this process but to be honest it was more uncomfortable than really painful. Yes, each injection made you jump and the taking of the samples felt and sounded like a staple gun inside you but you got used to it after a while and the 18 -30 samples were taken, I lost count. The worst bit was the probe entering which was totally alien to me.

I was expecting to suffer the next day but to my great relief I did not experience any issues at all and had minimal side effects.

I was the offered an appointment to discuss the results and unfortunately was told this week that my samples had indication of cancer at level 3 and 4. I was given three options of monitoring, removal or radiotherapy and chose the removal option. That was 3 days ago form when I wrote this.

Since then I have read up lots of information on Prostate cancer and contacted the marvellous charity Prostate cancer UK whose nurse was able to talk to me for 50 minutes and deal with all the issues I wished to cover. She also is sending out a full information pack.

As part of the Prostate cancer UK charity work, they provide one to one conversation with someone who has had the operation at a similar age. I spoke to someone who had it at the same age as myself and we were able to openly discuss all issues including sexual ones. This was incredibly beneficial, and I would recommend anyone in this position to do this.

The emotions have been all over the place as you read the consequences of the operation which range in severity and these provide you with the fear of the unknown. I am though determined not to let this get in the way of what I want to do and despite the fact I know this is going to be stressful and limiting I intend to work on getting better as quickly as possible.

The operation is in just over three weeks’ time and I will be updating the blog as  events occur with the pre op assessment in 8 days’ time.

Post 2
As you can see the pack arrived from Prostate Cancer has arrived with lots of information and samples of what you are going to need after the operation.


The last week was all about getting your head around the situation and finding out as much as possible. Without doubt the first thing I would recommend you do is contact Prostate Cancer UK and speak to one of their nurses to learn and ask if they can send you a pack out to you. Also do the 1 to 1 if offered as it provides you with an opportunity to talk to someone who has gone through your experience.


Emotions are far more stable as you accept the situation and move on. Do not underestimate the impact on your loved ones, it impacts them as much as you. Make sure they know exactly what is happening.


We have been doing research and learned what to expect in using a catheter. The doctors just say you will have one inserted for two weeks after the operation as if you know what they mean off course you do not unless you have experienced one.


The best You tube video we found to explain it  can be seen at


https://www.youtube.com/watch?v=L7lIIYArTX4.


The most appropriate words are at at 9.12 the doctors states "You will feel very relieved to have your catheter removed. I am not certain the use of the word relieved is most appropriate given the subject but I am certain he is going to be correct!


Make sure you are positive about the whole thing, keep your humour and keep yourself busy,


Post 3


Just back from letting my doctors know what is happening and finding out how to contact the district nurse if needed after the operation.

So last week we had one appointment with the designated personal nurse - 2 hours and the pre op appointment where further tests were done last Friday which lasted an hour.

The first meeting had lots of information including my current Gleason score of 7 as shown above, which given the circumstances was about as good as I could have hoped for.

We were informed 9/22 of the samples taken at the biopsy had cancer in them and that the level is currently T2 where the cancer is seen on scans but is believed to be contained within the Prostate. I am also fortunate enough not to require having the lymph glands removed.

The other good news was it is only in the left side of the Prostate so at worst it should be a unilateral nerve saving operation. The nerves impact the sexual feelings you have after.

So overall the stage is described as Localised (early) which is why I was provided with the three options of treatment.

In terms of the operation we were informed I have the joys of an epidural to look forward to before the general anesthetic is administered, antibiotics,  the joys of wearing flight socks.

Afterwards I will need to be injecting heparin for 2-4 weeks, have the joys of a catheter for at least two weeks and then incontinence recovery and no caffeine and preferable no alcohol. Guess a lock in at the pub is out of the question for a while!

Pain control is simply the classic Ibuprofen and Paracetamol mix. You also may be provided with some Codeine if necessary.

I have to say the treatment we have been provided with to date has been excellent and provides you with every opportunity to discover what is going to happen to you with total transparency as long as you are not too embarrassed to ask the personal questions in this situation nobody minds.

We were also informed how important it is to keep mobile and move around as much as your body will allow as soon as possible without overdoing it.

In terms of driving a minimum of 2 weeks but if able you can be a passenger if you are fit enough to get to places.

On the Friday I answered a lot of standard questions that you would expect, had an ECG, blood test weight height measured and received more information and 3 drinks you have to take for energy prior to the op . 2 the night before and one in the morning, in our case early as we need to be at the hospital for 7am.  Also found out to turn up with own PJ's and dressing gown. Everything else to be brought in the evening for a one night stay. Likely to be home again late the following day when the fun begins !

So now the wait for the operation,

We are already preparing and buying items we are going to need. I am to keep this updated as events occur.

Right now everything is focused on the build up to the operation and quite obviously a major topic of conversation ! Feeling ok about it so far.

User
Posted 24 Sep 2019 at 18:55
Excellent write-up, Alastair. One minor point: you say "The nerves impact the sexual feelings you have after." but it's not "sexual feelings" that nerve-sparing surgery impacts, but rather your ability to achieve an erection.

Very best wishes,

Chris
User
Posted 24 Sep 2019 at 19:38

After reading your blog Alistair it makes me wonder about the different treatments given at different stages of Gleason score.


I had a transperineal template biopsy as day surgery and I had minimal issues going home immediately afterwards no catheter or any further medication


 I was Gleason 9. made up of 4:5  an aggressive cancer but I was lucky like you that it was T2c Totally confined within the prostate but I had 80% cancer in one lobe and 60% cancer in the other. 


 I was immediately put on an LHRH agonist called Triptorelin  and nearly 4 months later I had 20 fractions of high dose EBRT.


The only effects I have suffered from that radiotherapy has been increased flatulence and mild diarrhoea which is pretty constant even now a year later


 Of course I suffer from erectile dysfunction because of the hormone treatment but as my PSA was 38 on diagnosis in March 2018 as of today it is less than 0.1 always my cancer nurse calls it undetectable.


I find it remarkable all that you have been through and suffered when you had a relatively low grade cancer  and I had a high grade cancer and I’ve experienced nothing of the suffering which you have. 


All the best on your journey my friend


 All the best on your journey my friend


Alan Bennett 


 


 

Edited by member 24 Sep 2019 at 19:42  | Reason: Not specified

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User
Posted 24 Sep 2019 at 18:55
Excellent write-up, Alastair. One minor point: you say "The nerves impact the sexual feelings you have after." but it's not "sexual feelings" that nerve-sparing surgery impacts, but rather your ability to achieve an erection.

Very best wishes,

Chris
User
Posted 24 Sep 2019 at 19:38

After reading your blog Alistair it makes me wonder about the different treatments given at different stages of Gleason score.


I had a transperineal template biopsy as day surgery and I had minimal issues going home immediately afterwards no catheter or any further medication


 I was Gleason 9. made up of 4:5  an aggressive cancer but I was lucky like you that it was T2c Totally confined within the prostate but I had 80% cancer in one lobe and 60% cancer in the other. 


 I was immediately put on an LHRH agonist called Triptorelin  and nearly 4 months later I had 20 fractions of high dose EBRT.


The only effects I have suffered from that radiotherapy has been increased flatulence and mild diarrhoea which is pretty constant even now a year later


 Of course I suffer from erectile dysfunction because of the hormone treatment but as my PSA was 38 on diagnosis in March 2018 as of today it is less than 0.1 always my cancer nurse calls it undetectable.


I find it remarkable all that you have been through and suffered when you had a relatively low grade cancer  and I had a high grade cancer and I’ve experienced nothing of the suffering which you have. 


All the best on your journey my friend


 All the best on your journey my friend


Alan Bennett 


 


 

Edited by member 24 Sep 2019 at 19:42  | Reason: Not specified

 
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