I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Still not diagnosed

Email this conversation Print this conversation
User
Posted 08 Mar 2021 at 11:05

My husband was referred by his GP last August after a digital examination and PSA score of 483. A telephone conversation followed and the consultant confirmed, in writing, probable advanced metastatic cancer. He prescribed bicalutamide. The bone scan, fortunately, was clear, so in September the consultant wrote to advise he was arranging an MRI scan and biopsy. That was our last communication with a medical professional. The MRI scan was carried out, but the biopsy has now been cancelled 3 times and we still do not have a date, but know it will not be before April at the very earliest. I understand that Covid is causing delays, but this seems excessive for an “urgent” procedure. How worried should we be? 

User
Posted 08 Mar 2021 at 11:22

I completely understand the anxiety that this will be causing you, but in medical terms, a delay of a few months is of no consequence: the bicalutimide will be "starving" the cancer.


I really must say that to have a PSA of 400+ and not to have metastatic cancer is absolutely astonishing. Your husband is incredibly lucky!


Hope things start moving for you soon.


Very best wishes,


Chris

Edited by member 08 Mar 2021 at 11:39  | Reason: Typo

User
Posted 08 Mar 2021 at 11:39
Just because the bone scan was clear doesn't necessarily mean that the cancer is non-metastatic - just that the mets are not in the bones. Has anyone sent you a letter about the results of the MRI yet? Have you asked the GP whether s/he has received anything? has he had any further PSA tests to check whether the bicalutimide is working? If the MRI showed significant mets, they may have just decided that there is no need to put him through a biopsy.

Personally, I would be phoning the consultant's secretary or the relevant hospital department to ask for an explanation of the delay and the plan going forward. And if that didn't get any result, I would make a complaint to PALS at the relevant hospital.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Mar 2021 at 14:43

Hi,  I don't know when you last had a biopsy cancelled but it seems a shocking delay.   You might  expect regular blood tests after hormones.  It seems like the appointments people keep pushing you back but no-one is monitoring what is happening overall.


You could ask for the MRI result at least.  After several months of hormones it might have reduced it so a biopsy would not be as clear.


Is there a Macmillan service in the hospital.  I was given a named nurse who I could call. 


As said above ringing the Consultant's secretary is probably the first point of call if you've no named nurse.  If it was me and the answer was unclear I'd follow it up with a polite formal letter indicating your concerns with supporting evidence and make some more phone calls.


All the best

Edited by member 08 Mar 2021 at 14:47  | Reason: Not specified

User
Posted 08 Mar 2021 at 18:01

Jakki, I think you should push them like crazy this is not acceptable to wait so long.    When I was diagnosed I had every test possible within 14 days and a colleague had asked if I had gone private which I hadn't.  Ok, it was not Covid times as the initial investigations were being carried out but I really could not fault any of the care that followed.   I'm in the north of england and clearly depending on the treatment etc there is huge difference from area to area.


 


Good Luck and push to get it all sorted, this is  a good site for advice for sure.


 


 

User
Posted 08 Mar 2021 at 18:26

I too am a don't rock the boat person, but you're in a boat which definitely needs rocking. Something has gone wrong with the system. There are various targets for cancer diagnosis and treatment. I can't remember what they are, but they are a few weeks not many months. 

Dave

User
Posted 08 Mar 2021 at 23:53
I am sorry for the problems you are having with our new Covid Health Service!

Definitely rock the boat, and on the one occasion I contacted PALS on behalf of an elderly friend, things happened almost instantaneously. Has he had a recent PSA test, as the result of that might give you some slight reassurance that the HT is working?

He needs that biopsy. Get on the case.

Best of luck.

Cheers, John.
User
Posted 09 Mar 2021 at 08:00

I would suggest go and talk with your GP. Asking for an urgent appointment would be in order after a failure of cancer care for 6 months.


Ask your GP for a PSA test, so you know what's happening. You do need to know the hormone therapy is working (and the 50mg bicalutamide didn't work on me).


Ask your GP to suggest what to do, including referring you to another hospital (you can be referred to any hospital you wish in England).


Referral to one of the main cancer centers will progress much faster, because they won't be fighting with COVID on the same sites as they treat cancer, like many of the district general hospitals have to.

Show Most Thanked Posts
User
Posted 08 Mar 2021 at 11:22

I completely understand the anxiety that this will be causing you, but in medical terms, a delay of a few months is of no consequence: the bicalutimide will be "starving" the cancer.


I really must say that to have a PSA of 400+ and not to have metastatic cancer is absolutely astonishing. Your husband is incredibly lucky!


Hope things start moving for you soon.


Very best wishes,


Chris

Edited by member 08 Mar 2021 at 11:39  | Reason: Typo

User
Posted 08 Mar 2021 at 11:39
Just because the bone scan was clear doesn't necessarily mean that the cancer is non-metastatic - just that the mets are not in the bones. Has anyone sent you a letter about the results of the MRI yet? Have you asked the GP whether s/he has received anything? has he had any further PSA tests to check whether the bicalutimide is working? If the MRI showed significant mets, they may have just decided that there is no need to put him through a biopsy.

Personally, I would be phoning the consultant's secretary or the relevant hospital department to ask for an explanation of the delay and the plan going forward. And if that didn't get any result, I would make a complaint to PALS at the relevant hospital.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Mar 2021 at 14:43

Hi,  I don't know when you last had a biopsy cancelled but it seems a shocking delay.   You might  expect regular blood tests after hormones.  It seems like the appointments people keep pushing you back but no-one is monitoring what is happening overall.


You could ask for the MRI result at least.  After several months of hormones it might have reduced it so a biopsy would not be as clear.


Is there a Macmillan service in the hospital.  I was given a named nurse who I could call. 


As said above ringing the Consultant's secretary is probably the first point of call if you've no named nurse.  If it was me and the answer was unclear I'd follow it up with a polite formal letter indicating your concerns with supporting evidence and make some more phone calls.


All the best

Edited by member 08 Mar 2021 at 14:47  | Reason: Not specified

User
Posted 08 Mar 2021 at 15:52
The first biopsy (November) was cancelled on the day, because the surgeon decided he needed a general, not local anaesthetic, the second (January) because of Covid, the third (February) because it was in a different hospital, where the surgeon didn’t like the equipment. However, the only communication we have had since September has been from clerical staff, arranging, then cancelling the biopsies. The final straw was when I phoned and was told that there are no procedures being booked for his consultant until at least April. The secretary herself is working from home, and so we are almost always greeted by an answerphone. I have emailed the consultant and the secretary told me she will leave the file on the consultant’s desk, but “there is no guarantee that he will look at it.” I have now decided that I will consult PALS if we don’t hear by the end of the week. My husband is very reluctant to “pester” and actually gets annoyed with me when I do, but feel this has gone on long enough.
User
Posted 08 Mar 2021 at 18:01

Jakki, I think you should push them like crazy this is not acceptable to wait so long.    When I was diagnosed I had every test possible within 14 days and a colleague had asked if I had gone private which I hadn't.  Ok, it was not Covid times as the initial investigations were being carried out but I really could not fault any of the care that followed.   I'm in the north of england and clearly depending on the treatment etc there is huge difference from area to area.


 


Good Luck and push to get it all sorted, this is  a good site for advice for sure.


 


 

User
Posted 08 Mar 2021 at 18:17
I have a horrible suspicion that our two consultants do more private than NHS work. And I agree with you that it isn’t acceptable. However, my husband is adamant that I mustn’t rock the boat. I am still determined to push if we don’t get a response this week, and all your helpful advice is giving me courage. Thank you.
User
Posted 08 Mar 2021 at 18:26

I too am a don't rock the boat person, but you're in a boat which definitely needs rocking. Something has gone wrong with the system. There are various targets for cancer diagnosis and treatment. I can't remember what they are, but they are a few weeks not many months. 

Dave

User
Posted 08 Mar 2021 at 23:53
I am sorry for the problems you are having with our new Covid Health Service!

Definitely rock the boat, and on the one occasion I contacted PALS on behalf of an elderly friend, things happened almost instantaneously. Has he had a recent PSA test, as the result of that might give you some slight reassurance that the HT is working?

He needs that biopsy. Get on the case.

Best of luck.

Cheers, John.
User
Posted 09 Mar 2021 at 06:25
No, John, no PSA test since August, and no word at all from his consultant since a letter in September. I will definitely contact PALS at the end of this week. Thank you.
User
Posted 09 Mar 2021 at 08:00

I would suggest go and talk with your GP. Asking for an urgent appointment would be in order after a failure of cancer care for 6 months.


Ask your GP for a PSA test, so you know what's happening. You do need to know the hormone therapy is working (and the 50mg bicalutamide didn't work on me).


Ask your GP to suggest what to do, including referring you to another hospital (you can be referred to any hospital you wish in England).


Referral to one of the main cancer centers will progress much faster, because they won't be fighting with COVID on the same sites as they treat cancer, like many of the district general hospitals have to.

User
Posted 09 Mar 2021 at 10:29

Thank you. We are in Wales and all the hospitals in the area seem to be affected. I think the same consultants work at all three hospitals and are obviously overwhelmed. Your advice about seeing the GP is helpful, though, if only to request another PSA test. He is on 150 mg of bicalutamide, which seems like a lot to be on for so long.

Edited by member 09 Mar 2021 at 19:54  | Reason: Added something

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK