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Seeking advice for my Husband

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User
Posted 25 May 2021 at 00:46

My Husband was diagnosed early this year and it was a huge shock, as I am sure it has been for everyone, but the Consultant who did his biopsy was 80% certain it was some inflammation and even he was shocked when the cancer was diagnosed.

His biopsy was done on his prostatic urethra and showed a Gleason score of 4+5 and his CT scan suggested T3c. MRI showed T2o NO and Bone scan MO.

He was recommended to have HT  and then radiotherapy and we are now three months into the hormone treatment with his planning appointment mid June for the radiotherapy.

I need some advice as until now I have been able to attend Consultant appointments with him and help him to remember all that was said to him.  He has become a little bit forgetful since taking the HT and is sometimes quite absent minded which he wasn't before having these drugs.  

We have been told I cannot attend the planning consultation and I am really concerned he will not remember everything which has been said to him.  I intend to go to all his treatment days as we do live about an hour and a half away from the hospital and I am concerned about him driving back once the treatment kicks in as I understand tiredness can get worse as the treatment progresses and I can do the driving if necessary.

If I can also ask another question, I have noticed from reading posts that a lot of gentlemen obtain access to thier patient records but today my Husband asked at the surgery to have access to his and he was kind of fobbed off by being told they only contain information from the surgery and will have no hospital information on them but we have never been given test results or biopsy results how do we gain access to these?

Many thanks in advance, I seem to be burning the midnight oil many nights searching for information as my Husband will not do this and has just decided to take all the treatment and not really ask much about what is going on so I am trying to be informed in order to help him.

Barbara

 

 

User
Posted 25 May 2021 at 06:14
I can't help with the RT question but there are lots of threads on here that may provide real world experience about that. I think the general experience is that it's not traumatic and RT staff are very helpful and knowledgeable so I am sure your husband will be OK.

Regarding his notes he has a legal right to obtain them. Get him to write to your practice manager and don't let the guard dogs put you off!

User
Posted 25 May 2021 at 07:19

Hi Barbara,

Its a trying time but things do get better. I had a similar Gleason to your husband when diagnosed in January and since then it’s been a whirlwind. I went for Hormone Therapy and then 20 sessions of Radiotherapy which, with Bank Holidays, took 5 weeks. I must admit fuzzy mind was a symptom I suffered. Fatigue was more later in the day for me say at eight o clock every night I would just crash! So driving home was not an issue for me. One thing I did do was ask the wonderful people at the RT clinic to give me early appointments every day which suited me and freed the rest of the day. The main issues I had were peeing on the hour every hour during the night, loose bowels and fatigue. Also unfortunately erectile dysfunction. But a these are steadily getting better. A major point was that the side effects worsen as the RT ends but usually recede within several weeks.

I’ve just had my first PSA test since the treatment which was 0.02 which is really pleasing. I speak to my consultant on Wednesday to get the latest prognosis.

It’s a hard road but all things pass and, like me, your husband has what sounds like a solid support base. I often thought about the poor guys I’d see every day and wondered if they had anyone to go home to .......

User
Posted 25 May 2021 at 11:40

If you want the prostate cancer treatment records, you need to request those from the hospital, not the GP. Unless you have a reasonable medical knowledge, they won't mean much to you though. Are you getting copies of the letters the hospital sends to your GP after the consultations? Those are worth having. Most hospitals copy patients in anyway, but some you have to ask them to.

I would explain to the CNS that your husband isn't remembering anything he's been told in the consultations (lay it on a bit thick), so that's why you need to be there. I would be a bit careful if he was eligible for prostatectomy, as they might decide on that basis he's not in good enough health, but you're past treatment decision point now anyway.

Edited by member 25 May 2021 at 11:42  | Reason: Not specified

User
Posted 25 May 2021 at 12:21
He is entitled to access all his medical records, both from his GP and the hospital.

First, ask the GP practice if they are connected to the EMIS Patient Access website, and if so, obtain the access codes. I can view all my records there, going back to pre-history, but my Father-in-law at a different GP practice can only see a fraction of his. If they are not on EMIS ask for a paper print-out of all information relevant to his current condition.

The hospital will have a similar Patient Access department, who again will be happy to furnish you (free) with his prostate-relevant notes - please specify that, or you might end up like I did, with all my hospital notes going back forever, enough to fill a library!

Best of luck to you both.

Cheers, John.

User
Posted 29 May 2021 at 03:43

I would say those tests are not routine for prostate cancer.

Cheers, John.w

User
Posted 29 May 2021 at 11:04

Barbara.

They may have some concerns about the effect RT can have on the urethera. For quite different reasons I had a catheter fitted before salvage RT.  Sounds like you are in good hands.

Thanks Chris

User
Posted 29 May 2021 at 15:46

Originally Posted by: Online Community Member

I would say those tests are not routine for prostate cancer.

Cheers, John.w

I actually did have a bladder ultrasound scan and a flow test prior to starting HT, John. My consultant wanted to check whether I needed to go on Tamsulosin. I didn't at the time, but had the very common "flow issues" a few weeks into RT and went on it then.

Cheers,

Chris

 

 

User
Posted 30 May 2021 at 11:36

Hi Barbara,

All the best, you obviously have internet access. Further to Andy, Bollinge and Chris, access to own records = Yes . Absolutely.  Other person  records, just need their consent. Easy to resolve.  Write, phone or email etc.

CAB or Aged UK sites can be a wealth of general information

https://www.citizensadvice.org.uk/health/nhs-healthcare/nhs-patients-rights/

Re.  Attending a consulting session, is different to a procedure attendance, + then overlay COVID19 NHS protocol, in effect in June.  The  RT sessions will become very routine.

Note : you can always request your own voice recording of any consultancy? . As long as agree by all parties involved obviously.  Most mobile phones easy to set up.

 

All the best.

Gordon

User
Posted 31 May 2021 at 09:47

hi barbara was in a similar situation 4/5 gleeson 9 psa 25 had 37 sessions off radiotherapy in march with very few problems on hormone therapy  just in the 2 month waiting period for 1st follow up and psa check feeling generally very well but nervous about the next stage hope your husband has a similar experience the radiotherapy i found a breeze i know some are not as lucky good luck to you both

User
Posted 31 May 2021 at 13:19
When I had my "Dear John" consultation with the urologist to tell me I had 'The Big C', which I had already twigged I had, he had a CD recorder and a box of tissues on his desk, neither of which were needed.

I am PCa free for three years this week, but a recent CT scan for a cough has identified other matters of interest...

I suppose they'll get you one way or the other, but the funny thing is, I've never felt so well!

Cheers, John.

User
Posted 08 Jun 2021 at 07:36
The fuzzy thinking is a very common side-effect of HT, Barbara. For me it wore off after a few months. I found the RT process no problem at all. I too lived an hour away from the hospital and had no problems driving there and back every day.

Best wishes,

Chris

User
Posted 08 Jun 2021 at 20:17
Barbara, never worry about posting here. I have been posting for 11 years although John only rarely logs in.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Show Most Thanked Posts
User
Posted 25 May 2021 at 06:14
I can't help with the RT question but there are lots of threads on here that may provide real world experience about that. I think the general experience is that it's not traumatic and RT staff are very helpful and knowledgeable so I am sure your husband will be OK.

Regarding his notes he has a legal right to obtain them. Get him to write to your practice manager and don't let the guard dogs put you off!

User
Posted 25 May 2021 at 07:19

Hi Barbara,

Its a trying time but things do get better. I had a similar Gleason to your husband when diagnosed in January and since then it’s been a whirlwind. I went for Hormone Therapy and then 20 sessions of Radiotherapy which, with Bank Holidays, took 5 weeks. I must admit fuzzy mind was a symptom I suffered. Fatigue was more later in the day for me say at eight o clock every night I would just crash! So driving home was not an issue for me. One thing I did do was ask the wonderful people at the RT clinic to give me early appointments every day which suited me and freed the rest of the day. The main issues I had were peeing on the hour every hour during the night, loose bowels and fatigue. Also unfortunately erectile dysfunction. But a these are steadily getting better. A major point was that the side effects worsen as the RT ends but usually recede within several weeks.

I’ve just had my first PSA test since the treatment which was 0.02 which is really pleasing. I speak to my consultant on Wednesday to get the latest prognosis.

It’s a hard road but all things pass and, like me, your husband has what sounds like a solid support base. I often thought about the poor guys I’d see every day and wondered if they had anyone to go home to .......

User
Posted 25 May 2021 at 11:40

If you want the prostate cancer treatment records, you need to request those from the hospital, not the GP. Unless you have a reasonable medical knowledge, they won't mean much to you though. Are you getting copies of the letters the hospital sends to your GP after the consultations? Those are worth having. Most hospitals copy patients in anyway, but some you have to ask them to.

I would explain to the CNS that your husband isn't remembering anything he's been told in the consultations (lay it on a bit thick), so that's why you need to be there. I would be a bit careful if he was eligible for prostatectomy, as they might decide on that basis he's not in good enough health, but you're past treatment decision point now anyway.

Edited by member 25 May 2021 at 11:42  | Reason: Not specified

User
Posted 25 May 2021 at 12:21
He is entitled to access all his medical records, both from his GP and the hospital.

First, ask the GP practice if they are connected to the EMIS Patient Access website, and if so, obtain the access codes. I can view all my records there, going back to pre-history, but my Father-in-law at a different GP practice can only see a fraction of his. If they are not on EMIS ask for a paper print-out of all information relevant to his current condition.

The hospital will have a similar Patient Access department, who again will be happy to furnish you (free) with his prostate-relevant notes - please specify that, or you might end up like I did, with all my hospital notes going back forever, enough to fill a library!

Best of luck to you both.

Cheers, John.

User
Posted 28 May 2021 at 22:13

I would like to thank all you kind gentlemen for taking the time to reply to my post and I have taken note of your wise comments and sound advice.

My husband has just received another appointment, this time for a flow test and bladder scan have any of you had this done as we wondered if this was a routine test.

Many thanks

Barbara

Edited by member 28 May 2021 at 22:21  | Reason: Not specified

User
Posted 29 May 2021 at 03:43

I would say those tests are not routine for prostate cancer.

Cheers, John.w

User
Posted 29 May 2021 at 11:04

Barbara.

They may have some concerns about the effect RT can have on the urethera. For quite different reasons I had a catheter fitted before salvage RT.  Sounds like you are in good hands.

Thanks Chris

User
Posted 29 May 2021 at 15:46

Originally Posted by: Online Community Member

I would say those tests are not routine for prostate cancer.

Cheers, John.w

I actually did have a bladder ultrasound scan and a flow test prior to starting HT, John. My consultant wanted to check whether I needed to go on Tamsulosin. I didn't at the time, but had the very common "flow issues" a few weeks into RT and went on it then.

Cheers,

Chris

 

 

User
Posted 30 May 2021 at 11:36

Hi Barbara,

All the best, you obviously have internet access. Further to Andy, Bollinge and Chris, access to own records = Yes . Absolutely.  Other person  records, just need their consent. Easy to resolve.  Write, phone or email etc.

CAB or Aged UK sites can be a wealth of general information

https://www.citizensadvice.org.uk/health/nhs-healthcare/nhs-patients-rights/

Re.  Attending a consulting session, is different to a procedure attendance, + then overlay COVID19 NHS protocol, in effect in June.  The  RT sessions will become very routine.

Note : you can always request your own voice recording of any consultancy? . As long as agree by all parties involved obviously.  Most mobile phones easy to set up.

 

All the best.

Gordon

User
Posted 31 May 2021 at 09:47

hi barbara was in a similar situation 4/5 gleeson 9 psa 25 had 37 sessions off radiotherapy in march with very few problems on hormone therapy  just in the 2 month waiting period for 1st follow up and psa check feeling generally very well but nervous about the next stage hope your husband has a similar experience the radiotherapy i found a breeze i know some are not as lucky good luck to you both

User
Posted 31 May 2021 at 13:19
When I had my "Dear John" consultation with the urologist to tell me I had 'The Big C', which I had already twigged I had, he had a CD recorder and a box of tissues on his desk, neither of which were needed.

I am PCa free for three years this week, but a recent CT scan for a cough has identified other matters of interest...

I suppose they'll get you one way or the other, but the funny thing is, I've never felt so well!

Cheers, John.

User
Posted 08 Jun 2021 at 01:19

Hi to all you very kind gentleman who answered my initial concerns.  We have now got access to my husbands medical records and there are some letters in there which have not been sent to us so at least we now understand a little more of what is going on.

We rang the centre where my husband will have the radiotherapy and he spoke to a really nice MacMillan Nurse who explained that I can go into the centre and use the facilities and waiting room if I wish to, so a relief I can at least use the loo as we live over an hour away.  He has his planning appointment on Thursday and hopefully we will find out soon how many weeks he will have to go for treatment.  

He has actually seemed to pick up this past week and is not as forgetful or absentminded he also seems to be doing OK on the hormones although of course getting the normal hot flushes but is coping with those.  He will also need to be on hormone treatment for three years which was information in one of the letters not sent to us.

I hope its OK for me to post on this site as I just want to give my husband of 44 years as much love and support as I can, I hope you are all keeping well and once again thank you for helping.

Barbara

 

 

User
Posted 08 Jun 2021 at 07:36
The fuzzy thinking is a very common side-effect of HT, Barbara. For me it wore off after a few months. I found the RT process no problem at all. I too lived an hour away from the hospital and had no problems driving there and back every day.

Best wishes,

Chris

User
Posted 08 Jun 2021 at 08:25

Originally Posted by: Online Community Member
When I had my "Dear John" consultation with the urologist to tell me I had 'The Big C', which I had already twigged I had, he had a CD recorder and a box of tissues on his desk, neither of which were needed.

I am PCa free for three years this week, but a recent CT scan for a cough has identified other matters of interest...

I suppose they'll get you one way or the other, but the funny thing is, I've never felt so well!

Cheers, John.

 

Hopefully not for a while!  I for one will miss the Matron jokes!

User
Posted 08 Jun 2021 at 18:06
Don’t worry about me.

The CT showed furred-up arteries which hopefully will be sorted with an angioplasty, some minor lung disease associated with long Covid, and a fatty liver, no doubt due to my predilection for Champagne, wine and beer.

As I said to Matron the other day when she was waiting for a cancer check, we’re certainly getting our money’s worth out of the Covid Health Service in our old age!

Cheers, John.

User
Posted 08 Jun 2021 at 20:16
Can I just clarify, are there two matrons in your life? I hope I have not been replaced in your affections!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jun 2021 at 20:17
Barbara, never worry about posting here. I have been posting for 11 years although John only rarely logs in.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Jun 2021 at 10:39

Originally Posted by: Online Community Member
Can I just clarify, are there two matrons in your life? I hope I have not been replaced in your affections!

You’re the only Matron in my life currently, but there may be more in future, subject to numerous medical tests.

The strange thing is, I’ve never felt so well!

Cheers, John.

 
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