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User
Posted 31 Dec 2023 at 17:17

Hi

 

My husband was diagnosed with advanced prostate cancer with extensive spread to bones and lymph nodes December 2021. He is 66. He had upfront Docetaxel and started 3 monthly Prostap injections. 

he has recently been started on Abiraterone as his cancer is now castrate resistant. 

I am interested in how others have experienced treatment and care during their journey as we are considering asking to be moved to a different hospital. 

we have only seen our consultant once in the two years and all our appointments are telephone consultations. It’s really difficult to fully discuss options and concerns over the phone but our hospital just does not have the capacity to see most patients face to face since Covid. 

Is others experience the same and are we expecting too much? 

we both feel completely isolated with this and it doesn’t feel like there is anyone to talk to or go to for advice. 

I would really appreciate hearing about others experiences in similar circumstances - very uncertain what the future holds right now.

 

many thanks for reading this

User
Posted 01 Jan 2024 at 20:43

The numbers of CNS's and their effectiveness seems to vary considerably between hospitals.

There were two very good ones where I was diagnosed, which is now up to 3 plus a good support worker.

I support patients at some other hospitals were there are either too few, or where there seem to be enough, but the patients are just an inconvenience for them, and hence they are ineffective.

Edited by member 02 Jan 2024 at 10:45  | Reason: Not specified

User
Posted 31 Dec 2023 at 17:17

Hi

 

My husband was diagnosed with advanced prostate cancer with extensive spread to bones and lymph nodes December 2021. He is 66. He had upfront Docetaxel and started 3 monthly Prostap injections. 

he has recently been started on Abiraterone as his cancer is now castrate resistant. 

I am interested in how others have experienced treatment and care during their journey as we are considering asking to be moved to a different hospital. 

we have only seen our consultant once in the two years and all our appointments are telephone consultations. It’s really difficult to fully discuss options and concerns over the phone but our hospital just does not have the capacity to see most patients face to face since Covid. 

Is others experience the same and are we expecting too much? 

we both feel completely isolated with this and it doesn’t feel like there is anyone to talk to or go to for advice. 

I would really appreciate hearing about others experiences in similar circumstances - very uncertain what the future holds right now.

 

many thanks for reading this

User
Posted 01 Jan 2024 at 10:51

Hi

I've read your thread,I agree that oncologist is only interested in giving out treatment once your condition is progressing I've always found talking to the nurse at my local support group I go to every month very helpful and I have numbers for oncology nurses and specialist nurses to ring as well.ive found doctor's at practice are limited in what tests they can give and just tell me to go to A&E if I have issues.sorry I meant urology nurses.

Regards Phil 

Edited by member 01 Jan 2024 at 10:53  | Reason: Not specified

User
Posted 01 Jan 2024 at 12:04

I understand your frustration.  I’m under an oncology team in Essex too.  The oncologists I have dealt with have been very good but the CNS are almost impossible to contact.

I had an appointment on 7th December, the oncologist said she would arrange CT and bone scan as my PSA had risen from 0.49 to 2.12 in 6 months.  I’ve heard nothing.  I tried contacting both CNS on 7th December by email after my telephone appointment but nothing back from either of them.

User
Posted 01 Jan 2024 at 13:22

Hi thanks for this - it seems like the CNS are the missing link for us and possibly others in our region. They exist but just so hard to get hold of!!

User
Posted 02 Jan 2024 at 09:02

I have something similar with blood tests.  I moved area which is covered by a different health trust but in same county but I wanted to stay with the same oncology team.

I now have to go back to the original health trust for the tests, despite told it would be ok to have them here. The trust I was with said they couldn’t see the results. 

I ended up getting a hard copy from the surgery, scanning it and forwarding it to the oncologist.

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User
Posted 31 Dec 2023 at 19:04
Sorry that you have been left feeling unsupported, MO but in all honesty, what you are experiencing seems to be the new normal and probably what you would receive in many hospitals around England. When a man is incurable, once he has had chemo there is very little reason for the oncologist to need to see him except when the treatments are all failing and a change is needed. Telephone appointments may be frustrating but in some areas, the onco doesn't see the patient at all while the HT is working and the PSA is stable.

What you should have (but don't seem to have mentioned) is a named nurse specialist - either from oncology or urology - that you can talk to and ask questions of. There may also be a PCUK support group in your region and / or a Maggie's centre at your nearest large hospital.

I think that, since abi has recently been added and you are feeling concerned, it would be perfectly reasonable to contact the onco's secretary to ask for the next review appointment to be face to face. You could also phone the hospital uro / oncology department to ask who your named nurse is and how to contact them.

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

User
Posted 31 Dec 2023 at 19:44

Thank you so much for this - it is actually reassuring to know that it’s much the same for everyone. 
we do have a named Uro/Onco nurse but just can never get hold of her. No answer on phone, no facility to leave a message. Think I’ve only managed to get hold of her once in two years.

Sadly that would be a good option as all we want is the opportunity to ask questions about things like side effects etc but I think even that department is woefully underfunded and understaffed. 

the last time I spoke to the oncos secretary, I felt very sorry for her as she clearly doesn’t have the appointments available to offer people.  Started on Abi beg October and told appointment to review in 6 weeks - just got the telephone appointment through for 13/1 and I really had to chase every week for that 

trying to stay positive and reassure my husband that no appointment is a sign that the Abi is working 

User
Posted 01 Jan 2024 at 00:48
I see you too are in Essex. We also find the same that communication is impossible it is very isolating. The oncologists really seem to be very busy so it’s hard to get appointments and getting hold of CNS is hard to get a call back.

User
Posted 01 Jan 2024 at 08:31

Thanks T

yes that was reason for my post, wondering if Essex are any worse than anywhere else.

im going to keep trying with the onco/urology nurse - just want some answers. Been having 2 weekly bloods since beg Oct and don’t even get to see the results, its so frustrating not knowing if the treatment is even working. 

User
Posted 01 Jan 2024 at 10:51

Hi

I've read your thread,I agree that oncologist is only interested in giving out treatment once your condition is progressing I've always found talking to the nurse at my local support group I go to every month very helpful and I have numbers for oncology nurses and specialist nurses to ring as well.ive found doctor's at practice are limited in what tests they can give and just tell me to go to A&E if I have issues.sorry I meant urology nurses.

Regards Phil 

Edited by member 01 Jan 2024 at 10:53  | Reason: Not specified

User
Posted 01 Jan 2024 at 12:04

I understand your frustration.  I’m under an oncology team in Essex too.  The oncologists I have dealt with have been very good but the CNS are almost impossible to contact.

I had an appointment on 7th December, the oncologist said she would arrange CT and bone scan as my PSA had risen from 0.49 to 2.12 in 6 months.  I’ve heard nothing.  I tried contacting both CNS on 7th December by email after my telephone appointment but nothing back from either of them.

User
Posted 01 Jan 2024 at 13:22

Hi thanks for this - it seems like the CNS are the missing link for us and possibly others in our region. They exist but just so hard to get hold of!!

User
Posted 01 Jan 2024 at 15:51

We must be lucky in Scotland. In Fife we have 4 CNSs in Urology and if you phone up and nobody is able t9 answer you can leave a message a someone will call you back within 24 hours,

User
Posted 01 Jan 2024 at 16:39

Originally Posted by: Online Community Member

Thanks T

yes that was reason for my post, wondering if Essex are any worse than anywhere else.

im going to keep trying with the onco/urology nurse - just want some answers. Been having 2 weekly bloods since beg Oct and don’t even get to see the results, its so frustrating not knowing if the treatment is even working. 

Your husband should be able to see his test results within a couple of days by logging into the NHS app or in your GP digital file. Depends a bit on which system your GP uses but the common ones are PATCHS, SystemOne, myGP  

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

User
Posted 01 Jan 2024 at 20:25

Originally Posted by: Online Community Member

I understand your frustration.  I’m under an oncology team in Essex too.  The oncologists I have dealt with have been very good but the CNS are almost impossible to contact.

I had an appointment on 7th December, the oncologist said she would arrange CT and bone scan as my PSA had risen from 0.49 to 2.12 in 6 months.  I’ve heard nothing.  I tried contacting both CNS on 7th December by email after my telephone appointment but nothing back from either of them.

 

it’s shocking the CNS in Essex often fail to respond. We’ve been given a number to contact a lady who passes the message on to the CNS, that’s always answerphone if we’re lucky she calls back a few days later. CNS said she’s not willing to give her email to patients. It’s very poor to be honest as for targets they failed every one. It’s so stressful 

Edited by member 01 Jan 2024 at 20:28  | Reason: Not specified

User
Posted 01 Jan 2024 at 20:27

Originally Posted by: Online Community Member

We must be lucky in Scotland. In Fife we have 4 CNSs in Urology and if you phone up and nobody is able t9 answer you can leave a message a someone will call you back within 24 hours,

 

very lucky, in Essex you’re left feeling very unsupported, I thought it was just us, clearly not 😥

User
Posted 01 Jan 2024 at 20:43

The numbers of CNS's and their effectiveness seems to vary considerably between hospitals.

There were two very good ones where I was diagnosed, which is now up to 3 plus a good support worker.

I support patients at some other hospitals were there are either too few, or where there seem to be enough, but the patients are just an inconvenience for them, and hence they are ineffective.

Edited by member 02 Jan 2024 at 10:45  | Reason: Not specified

User
Posted 02 Jan 2024 at 05:50

Hi we can’t access our results on the app ad our gp surgery say they do not have access to the results themselves because they are linked to a different system. Have to admit it made no sense to me! I also contacted the hospital to ask them if the results can be added on the app and they directed us back to the GP 

User
Posted 02 Jan 2024 at 09:02

I have something similar with blood tests.  I moved area which is covered by a different health trust but in same county but I wanted to stay with the same oncology team.

I now have to go back to the original health trust for the tests, despite told it would be ok to have them here. The trust I was with said they couldn’t see the results. 

I ended up getting a hard copy from the surgery, scanning it and forwarding it to the oncologist.

 
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