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Repeated biopsies

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User
Posted 09 Dec 2023 at 00:27

I'm so scared my husband will have secondary cancer by the time he has diagnosis. He had biopsies and then waited 9 weeks for results.

He has been told over the telephone that he needs repeated biopsies. This will take place on 28th December. If the results take another 9 weeks that will be February.the letter sent to GP mentions cancer but not what type ( I understand adenocarcinoma usually)

We expected to understand what they are telling us but after MRI we were told prostate full.unlikely to be anything other than cancer (further blood tests ruled out infection)

He was told by GP he should have been referred the year before on the two week cancer pathway so when he was referred beginning September we assumed he would be diagnosed fairly quickly. Are biopsies often repeated like this?

 

 

 

User
Posted 09 Dec 2023 at 09:40

Hi Debbie.

You seem to be having a rough time. I'm trying to untangle your post and profile bio.

Let's start at the beginning.

Is it correct that your hubby went to your GP in May 2022 and was told by them 4 months later, that following the May consultation, that they should have referred him for fast track cancer investigations?  If so , this 'mistake' is unacceptable, and on the face of it, appears to be a blatant breach of care.

Can you confirm that he eventually saw a urologist. If so when?

Presumably, he then had an MRI scan. When was this and what were the results?

Presumably, he then had a biopsy. When was this and what were the results?

You're saying that they then recontacted you stating they needed a repeat biopsy scheduled for the 28th of December. Did they tell you why they needed another?

Once we've established these details we'll be better placed to help you.

Adrian

 

Edited by member 09 Dec 2023 at 09:46  | Reason: Typo

User
Posted 09 Dec 2023 at 09:43

Sorry you are here. If he is having a second biopsy presumably the first biopsy found nothing.

However the fact they are still looking and three doctors have said he has cancer implies there is strong evidence of cancer. MRI shows increased blood flow which could be inflammation, blood tests not showing markers of inflammation does suggest maybe it is cancer, but until a biopsy finds something it is not possible to know.

If his prostate is "full" I don't know why the first biopsy couldn't find anything. It's true a biopsy is like shooting in the dark, but with a "full" prostate they couldn't miss.

What is his PSA?

Most men have prostate cancer for ten or twenty years without it spreading, so six month delay probably won't make a difference.

The service you have had from the NHS is appalling. I'm glad you got your MP involved. Do not wait more than two weeks for future results, keep calling them. The squeaky wheel gets the oil.

Dave

User
Posted 12 Dec 2023 at 16:03

Debbie, it sounds like you have had appalling service. My GP missed a PSA of 6.9 thirteen years ago, three years later it was 7.7. From referral to biopsy was a week and a week later I saw the consultant for a positive diagnosis. I waited 4 months for a new Davinci robot to be installed. 

I have had lots of treatments along the way and still not out of the woods but at least not on HT for life. I probably started with prostate issues, terminal dribbling, 22 years ago. It is a slow growing disease but that doesn't make long delays acceptable. It all starts somewhere and we don't know at when it reaches a tipping point. 

Thanks Chris 

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User
Posted 09 Dec 2023 at 09:40

Hi Debbie.

You seem to be having a rough time. I'm trying to untangle your post and profile bio.

Let's start at the beginning.

Is it correct that your hubby went to your GP in May 2022 and was told by them 4 months later, that following the May consultation, that they should have referred him for fast track cancer investigations?  If so , this 'mistake' is unacceptable, and on the face of it, appears to be a blatant breach of care.

Can you confirm that he eventually saw a urologist. If so when?

Presumably, he then had an MRI scan. When was this and what were the results?

Presumably, he then had a biopsy. When was this and what were the results?

You're saying that they then recontacted you stating they needed a repeat biopsy scheduled for the 28th of December. Did they tell you why they needed another?

Once we've established these details we'll be better placed to help you.

Adrian

 

Edited by member 09 Dec 2023 at 09:46  | Reason: Typo

User
Posted 09 Dec 2023 at 09:43

Sorry you are here. If he is having a second biopsy presumably the first biopsy found nothing.

However the fact they are still looking and three doctors have said he has cancer implies there is strong evidence of cancer. MRI shows increased blood flow which could be inflammation, blood tests not showing markers of inflammation does suggest maybe it is cancer, but until a biopsy finds something it is not possible to know.

If his prostate is "full" I don't know why the first biopsy couldn't find anything. It's true a biopsy is like shooting in the dark, but with a "full" prostate they couldn't miss.

What is his PSA?

Most men have prostate cancer for ten or twenty years without it spreading, so six month delay probably won't make a difference.

The service you have had from the NHS is appalling. I'm glad you got your MP involved. Do not wait more than two weeks for future results, keep calling them. The squeaky wheel gets the oil.

Dave

User
Posted 12 Dec 2023 at 15:29

Firstly thank you.

Husband was called in to GP beginning September 2023 told he should have been referred May 2022 PSA 9.7

MRI - PIRADS 4     T2B  N0 M0 (No dye injected 

Dr in clinic said that the prostate was full and it was unlikely to be due to any other cause

Biopsy 12th October ( I had pestered and thankfully he got a cancellation slot)

Told by consultant 3 weeks for results

After 3 weeks+ I contacted Patient liaison and they got back to me to consultant should have told us 6-8 weeks they advised contacting both the hospital that processes samples and the hospital that manages our local urology dept - automatic reply emails saying 10 days before reply- still heard nothing from either trust

When we had heard nothing from urology our MP contacted them.

the reply was that they were going to discuss his case at MDT meeting the following Monday (27th) November

The letter sent to GP states a few samples are highly suspicious for malignancy and for repeat biopsies

I'm so worried but also puzzled because I've never seen a histology report that didn't specify the type of cancer eg adenocarcinoma, squamous cell, basal cell etc but the prostate is a mystery to me.

If the results take 8 weeks+ from biopsy on 28th December that will over 6 months since referral 

 

 

 

User
Posted 12 Dec 2023 at 16:03

Debbie, it sounds like you have had appalling service. My GP missed a PSA of 6.9 thirteen years ago, three years later it was 7.7. From referral to biopsy was a week and a week later I saw the consultant for a positive diagnosis. I waited 4 months for a new Davinci robot to be installed. 

I have had lots of treatments along the way and still not out of the woods but at least not on HT for life. I probably started with prostate issues, terminal dribbling, 22 years ago. It is a slow growing disease but that doesn't make long delays acceptable. It all starts somewhere and we don't know at when it reaches a tipping point. 

Thanks Chris 

User
Posted 12 Dec 2023 at 18:14

Thank you

 
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