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Long wait times for tests and results

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User

Posted 10 Nov 2023 at 16:03

My husband (56) was found to have raised PSA levels and a digital rectal exam also raised concerns. Urologist said it is likely to be cancer, but MRI and then probably a biopsy would confirm. He had PSA test in mid-September and saw a urologist more than 3 weeks later and then had an MRI at the end of October (nearly two weeks after seeing urologist). The MRI results were supposed to be within 2 weeks at the latest which is today. He has heard nothing although he has chased this week. It’s now 2 months since his blood test. Obviously NHS target wait times for tests and diagnosis are completely out of the window. He hopes that no news is good news but I wonder if it’s more about the NHS being on its knees. Also concerned about the impact of delay if it is cancer which is spreading outside of the prostate. And it’s really stressful as we haven’t told our three teenage children yet (don’t want them to be alarmed until a plan is in place). What are others’ experiences of wait times? Is this the norm? We’re in the West Midlands.

User

Posted 10 Nov 2023 at 17:55

Do you have a CNS allocated to you? If so give them a phone.

Good luck, I know this initial waiting is very difficult, but try and keep yourself as busy as possible.

Derek

User

Posted 10 Nov 2023 at 18:11

Hi Mary.

I'm in Lincolnshire.

I first saw a urologist in Nov 2020, during COVID. I had my first MRI a week later.

I'm not sure how long after that I got the results but the follow up biopsy was done only 2 weeks later.

I'll keep my fingers crossed for you and your family that you soon get the result and that it is good.

Adrian

Edited by member 10 Nov 2023 at 19:15 | Reason: Typo

User

Posted 10 Nov 2023 at 19:03

I’m in Lincolnshire as well, and I think I got my MRI results pretty quickly but then had to wait 6 weeks for a biopsy, then 4 weeks for the results.
Hopefully if they haven’t been in touch yet then there is no rush to get a biopsy booked. Either way, a wait of a few weeks won’t make any difference in the long run, as this is a slow growing cancer.
The waiting is very stressful, but try not to let it get to you both. Keep busy, and do nice things to take your minds off it. Good luck, and keep us posted 👍

User

Posted 10 Nov 2023 at 20:42

Originally Posted by: Online Community Member

Do you have a CNS allocated to you? If so give them a phone.

Good luck, I know this initial waiting is very difficult, but try and keep yourself as busy as possible.

Derek

what’s a CNS? So I think the answer to your question is “No”! 😂

User

Posted 10 Nov 2023 at 21:51

Originally Posted by: Online Community Member

what’s a CNS? So I think the answer to your question is “No”! 😂

A Clinical Nurse Specialist. It's usual for one to be allocated to you as a point of contact.

User

Posted 10 Nov 2023 at 22:08

CNS=Clinical Nurse Specialist, a nurse specialising in your particular cancer.

Each patient is supposed to have a CNS assigned once diagnosed, someone you can contact when you have any questions or issues. Sometimes this is a team rather than one specific CNS. Ideally, they attend your clinician appointments, and sometimes they might actually run the appointment.

Not all hospitals have enough CNS's for all their cancer patients.

User

Posted 10 Nov 2023 at 23:26

We had MRI and biopsy, followed by consultation very quickly. But then the wait for RP was very long (4 months). That was 2 years ago and unfortunately my husband (58) now has recurrence. Had a scan very quickly but wait to see Oncologist is 5 weeks to see what treatment plan is. We feel like it's the first diagnosis again and just want to know what is happening

I would definitely keep chasing up as it's very hard to sort your head out until you know the facts.

User

Posted 10 Nov 2023 at 23:37

Originally Posted by: Online Community Member

I would definitely keep chasing up as it's very hard to sort your head out until you know the facts.

Sorry you have a long wait for oncology. The waiting is very stressful. Take care.

User

Posted 11 Nov 2023 at 10:28

My husband had PSA test early August, MRI and bone scan within 10 days of referral but the wait for results after MDT was 3 weeks, then there was a wait for biopsy, then another wait for appointment with surgeon to get diagnosis and discuss treatment options. At that point we met the CNS. Then there was a wait to see oncologist and now there is a wait of a couple of months to start treatment. The waiting is horrendous and it’s due to capacity the CNS told us.

Hope you don’t have to wait much longer.

User

Posted 11 Nov 2023 at 10:39

My time line was 3.5 months from my regular 6-monthly PSA test in mid-July this year to RP at the end of October. There seemed to be a rhythm of 2 - 3 weeks between each appointment /event so there was an impression of momentum even though the overall duration was quite lengthy. I was quite happy with this as it meant we were able to fit in a couple of holidays walking in Wales and N. Norfolk, so it didn't feel as though my (ex-) prostate was clouding the whole summer.

For context I heard yesterday that my brother who lives in France is at the beginning of the same process following a highish PSA result last week, and the anticipated timescale is pretty similar.

I'm glad I nagged him to have a test as at 68 years old he'd never had one.

User

Posted 11 Nov 2023 at 10:55

Originally Posted by: Online Community Member

For context I heard yesterday that my brother who lives in France is at the beginning of the same process following a highish PSA result last week, and the anticipated timescale is pretty similar.

I'm glad I nagged him to have a test as at 68 years old he'd never had one.

Thanks, this and all replies are really helpful. Thanks for taking the time. I think it would be good if NHS stuck to the timings it has given us but hey ho! I’ve said to husband it’s more like marathon than sprint so we can’t live in a state of crisis for possibly months. I think it will be better when we have a diagnosis (or all clear) and a plan. Similar to post above, my husband only went for blood test because his dad had prostate cancer in his 70s. So it’s been quite a shock, but we’re very glad he went and my sons will need to do the same at the appropriate age.

User

Posted 11 Nov 2023 at 11:11

Hi Mary,

My husbands initial referral was delayed by a year because of covid. His GP said at the time he was referring him just for peace of mind and not to worry as it wouldn’t be anything (so we didn’t 🤦🏻‍♀️my biggest regret).

So the following year 2021, his PSA had jumped, we had a phone call at the start of May to tell us this and then the final diagnosis was at the very end of July so similar time lines. It was the worst time of our lives and really struggled.

We were the same with the kids, we only told them when he was officially diagnosed as there was no point in worrying them until we knew for sure. They knew something was going on though as they kept asking if we were ok as we didn’t seem ourselves 😢

Hope you get the results soon and fingers crossed it’s not cancer.

What was his PSA??

Take care

Elaine

User

Posted 11 Nov 2023 at 14:00

Seems a lot of us in the same boat. Until you have been through it you have no idea how scarey the "C" word is.......

User

Posted 12 Nov 2023 at 18:41

thanks for all the great replies, husband now has biopsy scheduled for 23 Nov which isn’t too far away. It pays to keep chasing.

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