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Help.It seems to be taking so long to get to op appointment

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User
Posted 28 Mar 2024 at 05:02

Hubby has Gleason3/4 - 3a Tumour.

Need to know if we should do something? But feel we've done what we can. But everyone else around us is panicking! It seems to be taking so long.

In short(bio long way round) Our journey started in Sept '23 high PSA, urgent MRI following week. Oct biopsy. Dec results and later a scan. Jan'24 saw surgeon. Jan flow test. Feb saw oncologist. March confirmed decision is surgery to oncologist. Then nothing for last 3weeks.

Hubby has phoned and left messages to nurses. Then he emailed them, the response was 'he knows about you'

Any advice please, is this normal. Obviously we haven't gone thru this before and no cancer experience here. Thanks x

User
Posted 28 Mar 2024 at 09:59

Hi,

I was in a similar position in terms of Gleason 3&4, biopsy & scan in November,  full diagnosis early Dec and referred to several consultants to discuss treatment in Dec. it was vey apparent that due to age (52) they felt only one way forward and that was to have the surgery and remove prostrate. i made decision there and then to go for the operation. they said due to waiting list etc it would prob be 3 - 4 months but would also put me on a priority list for any cancellations. 

I had my operation 3 weeks ago (6th March).

I did have a phone number for a specialist urology nurse who i found really helpful to phone up to ask any questions along the way. have you got one of those??

I think it will also depends which NHS trust etc for waiting list.

Good Luck!

    

User
Posted 28 Mar 2024 at 10:38

My husband’s diagnosis timeline similar - PSA mid September, MRI and biopsy end of October (this was a long and painful wait), CT and bone scans in November, diagnosis 22 December. Then he had to wait for a PSMA PET scan which was done in January. Saw surgeon on 19 Feb, radiologist a month later and having decided on surgery it is scheduled for next week. He has chased specialist nurse and consultants’ secretaries at every stage. I’m pretty certain if he hadn’t chased after PET scan he would not have seen surgeon until March. He has been on bicalutimide since Jan to slow the cancer down (diagnosis is more advanced than your husband). I absolutely recommend chasing for appointments and generally being a pain in the bum to move things on. Best of luck. 

User
Posted 28 Mar 2024 at 10:59
I think the main thing is to remember that PCa is slow growing and a few months isn't going to make a difference in almost all cases.

Good luck!

User
Posted 28 Mar 2024 at 12:00

I can understand your worry when your husband has a stage T3 diagnosis. As Steve86 says, PCa is very slow growing but nevertheless when you don't have any date for surgery it is still a worry. I had a T3b staging and my hospital wouldn't even commit to a rough date when I would have surgery other than it would be several months away. They were proposing to put me on HT while I waited but in the end I decided to put my hand in my pockets and go private. I appreciate that option is not open to everyone but maybe your husband husband would be able to go on HT to give him some peace while he waits for surgery. I see from the bio that he is concerned about the side effects of HT. The side effects are not guaranteed. Some people tolerate HT reasonably well while others less so. Most people seem to be to carry on their lives in a near normal manner.

My scans confirmed my PCa was locally advanced but showed no sign of spread to pelvic lymph nodes or bones. However that turned out not to be the case. One of the pelvic lymph nodes removed during surgery turned out to be positive. So I was right to make sure something was done sooner rather than later. I wish your husband the best of luck.

User
Posted 28 Mar 2024 at 12:03
This does seem about ‘normal’ timescale. My Husband was Gleason 3+4 T3c (lesions both sides but all contained in prostate). The investigations and diagnosis from two raised psa’s was quick, (mri/biopsy/bone scan and consultations all within 6 weeks). Decided on surgery and told about 12 weeks waiting list, however we did get caught up in the series of doctor strikes end of last year which pushed hospital schedules back. So surgery was 10/1/24 and that was just over 5 months from making the decision (Christmas break was also in there). It was an anxious time as we just wanted it out, we worried about the point of the cancer breaking out of the capsule….but it is slow growing, as others have said. In our case, post op was the best we could have hoped for, Gleason remained the same and histology showed all cancer was within capsule and nothing in surrounding tissues.

With the benefit of hindsight, the only thing we would say is start the pelvic floors now, Steve started them about 4 weeks before once he had a date for surgery and he wasn’t really consistent with them (he got four weeks notice). Although we will never know, doing them earlier may have improved his post op incontinence which he is struggling with at the moment. 11 weeks post op (but did need extended catheter time of four weeks). We know this phase can take a few months more to show signs of improvement….but we are grateful that the cancer is out and that was the objective!

User
Posted 28 Mar 2024 at 13:12

If you're in England, you can choose to be treated at any NHS hospital which will take you.

I don't know how you find out the surgery waiting list at other hospitals, but it might be worth asking your GP who can do the referral and should have experience of doing so, pros and cons. There might be an extra delay in getting your records transferred, but that might be more than made up for by a shorter waiting list elsewhere. Obviously, this might mean more travel, and if you are considering doing this, you might as well look at the major treatment centres.

I'm not sure how this works in Scotland and Wales.

User
Posted 28 Mar 2024 at 13:33
As inferred possibility in a previous reply, you could also let it be known that hubby would be prepared to take a short notice cancellation if one becomes available.
Barry
User
Posted 29 Mar 2024 at 12:41

Originally Posted by: Online Community Member
Jan'24 saw surgeon. Jan flow test. Feb saw oncologist. March confirmed decision is surgery to oncologist

Can you just confirm - have you told the urologist (surgeon) that you want surgery? Telling the oncologist just means they can close the case as they know you are not planning on having radiotherapy. The oncologist isn't necessarily going to send a message to the surgeon to let them know. 

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

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User
Posted 28 Mar 2024 at 09:59

Hi,

I was in a similar position in terms of Gleason 3&4, biopsy & scan in November,  full diagnosis early Dec and referred to several consultants to discuss treatment in Dec. it was vey apparent that due to age (52) they felt only one way forward and that was to have the surgery and remove prostrate. i made decision there and then to go for the operation. they said due to waiting list etc it would prob be 3 - 4 months but would also put me on a priority list for any cancellations. 

I had my operation 3 weeks ago (6th March).

I did have a phone number for a specialist urology nurse who i found really helpful to phone up to ask any questions along the way. have you got one of those??

I think it will also depends which NHS trust etc for waiting list.

Good Luck!

    

User
Posted 28 Mar 2024 at 10:38

My husband’s diagnosis timeline similar - PSA mid September, MRI and biopsy end of October (this was a long and painful wait), CT and bone scans in November, diagnosis 22 December. Then he had to wait for a PSMA PET scan which was done in January. Saw surgeon on 19 Feb, radiologist a month later and having decided on surgery it is scheduled for next week. He has chased specialist nurse and consultants’ secretaries at every stage. I’m pretty certain if he hadn’t chased after PET scan he would not have seen surgeon until March. He has been on bicalutimide since Jan to slow the cancer down (diagnosis is more advanced than your husband). I absolutely recommend chasing for appointments and generally being a pain in the bum to move things on. Best of luck. 

User
Posted 28 Mar 2024 at 10:59
I think the main thing is to remember that PCa is slow growing and a few months isn't going to make a difference in almost all cases.

Good luck!

User
Posted 28 Mar 2024 at 12:00

I can understand your worry when your husband has a stage T3 diagnosis. As Steve86 says, PCa is very slow growing but nevertheless when you don't have any date for surgery it is still a worry. I had a T3b staging and my hospital wouldn't even commit to a rough date when I would have surgery other than it would be several months away. They were proposing to put me on HT while I waited but in the end I decided to put my hand in my pockets and go private. I appreciate that option is not open to everyone but maybe your husband husband would be able to go on HT to give him some peace while he waits for surgery. I see from the bio that he is concerned about the side effects of HT. The side effects are not guaranteed. Some people tolerate HT reasonably well while others less so. Most people seem to be to carry on their lives in a near normal manner.

My scans confirmed my PCa was locally advanced but showed no sign of spread to pelvic lymph nodes or bones. However that turned out not to be the case. One of the pelvic lymph nodes removed during surgery turned out to be positive. So I was right to make sure something was done sooner rather than later. I wish your husband the best of luck.

User
Posted 28 Mar 2024 at 12:03
This does seem about ‘normal’ timescale. My Husband was Gleason 3+4 T3c (lesions both sides but all contained in prostate). The investigations and diagnosis from two raised psa’s was quick, (mri/biopsy/bone scan and consultations all within 6 weeks). Decided on surgery and told about 12 weeks waiting list, however we did get caught up in the series of doctor strikes end of last year which pushed hospital schedules back. So surgery was 10/1/24 and that was just over 5 months from making the decision (Christmas break was also in there). It was an anxious time as we just wanted it out, we worried about the point of the cancer breaking out of the capsule….but it is slow growing, as others have said. In our case, post op was the best we could have hoped for, Gleason remained the same and histology showed all cancer was within capsule and nothing in surrounding tissues.

With the benefit of hindsight, the only thing we would say is start the pelvic floors now, Steve started them about 4 weeks before once he had a date for surgery and he wasn’t really consistent with them (he got four weeks notice). Although we will never know, doing them earlier may have improved his post op incontinence which he is struggling with at the moment. 11 weeks post op (but did need extended catheter time of four weeks). We know this phase can take a few months more to show signs of improvement….but we are grateful that the cancer is out and that was the objective!

User
Posted 28 Mar 2024 at 13:12

If you're in England, you can choose to be treated at any NHS hospital which will take you.

I don't know how you find out the surgery waiting list at other hospitals, but it might be worth asking your GP who can do the referral and should have experience of doing so, pros and cons. There might be an extra delay in getting your records transferred, but that might be more than made up for by a shorter waiting list elsewhere. Obviously, this might mean more travel, and if you are considering doing this, you might as well look at the major treatment centres.

I'm not sure how this works in Scotland and Wales.

User
Posted 28 Mar 2024 at 13:33
As inferred possibility in a previous reply, you could also let it be known that hubby would be prepared to take a short notice cancellation if one becomes available.
Barry
User
Posted 29 Mar 2024 at 12:41

Originally Posted by: Online Community Member
Jan'24 saw surgeon. Jan flow test. Feb saw oncologist. March confirmed decision is surgery to oncologist

Can you just confirm - have you told the urologist (surgeon) that you want surgery? Telling the oncologist just means they can close the case as they know you are not planning on having radiotherapy. The oncologist isn't necessarily going to send a message to the surgeon to let them know. 

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

User
Posted 29 Mar 2024 at 16:22

Thanks for your reply.

He tried to let the cancer nurse know and she wouldn't accept his word until the oncologist had talked to him. He tried phoning the urologist secretary she wasn't taking his word either. He had to wait 10days for a 2min or less call from the oncologist who said she'd inform them. He's since tried leaving messages/emails but just got 'He knows about you' by email from the cancer nurse. He was supposed to see him last week but it got cancelled nothing else came after. He phoned the secretary(away) but told phone appointments. They said appointments are made by surgeon as and when! Still nothing. It's concerning as when we saw the surgeon he said in Jan about the possibility of (Oct) biopsies could mean stage 4. The kids/family are upset and worried, live away and abroad and continually on to us to chase. Hubby feels he is they just take so long to respond. Presumably they're busy. 

Another thought is he supposed to have another psa test since original one last Sept? 

Thanks 

 
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