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Worried Wife!

User
Posted 30 Jan 2025 at 09:50

Hello everyone. I hope it's ok for me to post here as it's my husband going through the tests and not me. My husband it totally unconcerned but I am really worried. 🫤

Three years ago my husband (who is now 62) had a slightly raised PSR and was sent for an MRI - two weeks later he was sent a letter saying everything was fine and that they'd set him a new PSR upper limit of 4.5. He was to have yearly blood tests and was to be re-referred if PSA went above new level. He had blood test in December and his PSA was 4.6 but he has no symptoms. He was referred for another MRI which was done just over a week ago. 

Yesterday he received a phone call to say that a telephone appointment had been booked for him to discuss his results. This has sent me into a complete panic as last time he just received a letter today everything was ok. I'm now thinking that there must be a problem if they need to speak to him. 


This morning he has had a letter confirming his appointment and to say that it will be with a 'nominated nurse'. 

I would love to hear others' experiences in a similar situation. Is it normal for a nurse to call to say that something was seen on MRI and that further tests are needed?

Thank you all in advance from a very worried/anxious wife.

 

User
Posted 30 Jan 2025 at 11:19

Hi,

This place is full of concerned wives and partners. Welcome to the forum.

Your husband's slightly raised PSA levels could be caused by many other non cancerous prostate conditions. The MRI may show suspicious area(s) but these can be caused by simple inflammation or benign lesions. 

It is normal to be seen by a CNS (clinical nurse specialist) when getting results.

Good luck to you both and please keep us updated. 👍

Edited by member 30 Jan 2025 at 11:21  | Reason: Additional text

User
Posted 30 Jan 2025 at 10:22

Zoogirl, at the top of the page there is a phone number ,give them a call and they will answer your questions. They are brilliant.

Scans can show suspicious areas, suspicious does not mean it is cancer.

Thanks Chris

User
Posted 30 Jan 2025 at 17:30

Hi Adam, thank you so much for your reply which I have found very reassuring. Do you find the 'watch and wait' approach ok or stressful? I worry that I wouldn't be able to forget about what might be going off inside and unseen.  I will definitely post an update after Andy (my hubby) gets his results. 

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User
Posted 30 Jan 2025 at 10:22

Zoogirl, at the top of the page there is a phone number ,give them a call and they will answer your questions. They are brilliant.

Scans can show suspicious areas, suspicious does not mean it is cancer.

Thanks Chris

User
Posted 30 Jan 2025 at 11:19

Hi,

This place is full of concerned wives and partners. Welcome to the forum.

Your husband's slightly raised PSA levels could be caused by many other non cancerous prostate conditions. The MRI may show suspicious area(s) but these can be caused by simple inflammation or benign lesions. 

It is normal to be seen by a CNS (clinical nurse specialist) when getting results.

Good luck to you both and please keep us updated. 👍

Edited by member 30 Jan 2025 at 11:21  | Reason: Additional text

User
Posted 30 Jan 2025 at 17:17

Hi Zoogirl

I've a similar story to your husband, I'm 2 years older and my psa went above the 4.5 threshold to 4.89 which prompted MRI which showed something suspicious and then a biopsy which showed localised prostate cancer. If you want the details see my bio but the point is DONT PANIC. I've been recommended no treatment which they call 'active surveillance' (PSA tests every 3-6 months, MRI's yearly). I've also now seen a surgeon privately who was very relaxed having seen my various reports. I found that visit very reassuring because I got 30 minutes proper dialogue and felt that I was getting the right suggestions for me as me and not just because I happened to fall into a particular grade band. Bottom line, the probability is with your husbands low PSA that even if it is a cancerous lesion it'll be contained and very treatable. I'd also echo Chris's comment below, ring the nurses at PCUK they are really good to talk to. Good luck and let us know what happens.

Cheers Adam

 

User
Posted 30 Jan 2025 at 17:30

Hi Adam, thank you so much for your reply which I have found very reassuring. Do you find the 'watch and wait' approach ok or stressful? I worry that I wouldn't be able to forget about what might be going off inside and unseen.  I will definitely post an update after Andy (my hubby) gets his results. 

User
Posted 30 Jan 2025 at 18:18
The reaction of many men if they are diagnosed with PCa is to 'Have it out' as for one reason they don't like the thought of cancer within them. However, there are other treatments too each with pro and cons and men are sometimes given a choice. Should your husband be diagnosed he would do well to look at various options open to him. However, take one step at a time because PCa has not yet been diagnosed. I am not saying this is the case here but some men have an above age range PSA because they have a large Prostate and there are other reaasons.

Do keep us advised.

Barry
User
Posted 30 Jan 2025 at 18:18

That's the $64M question and the answer is I don't know yet! It's only been a few weeks since the diagnosis. I'd have to be as certain as possible that AS is OK for me and I'm doing that by seeing 2 specialists privately, the surgeon who I saw yesterday and an oncologist in 10 days. The surgeon went through the biopsy in detail so although I'm Gleason 3+4 less than 10% are '4's', I've one small lesion and a low PSA so he said 'If I were in your shoes I'd go on AS for a year, see how you feel, some men are fine with it some just want the cancer out and are willing to deal with the side effects'. Bear in mind Andy may not even get a PCa diagnosis but if he does and it's low to intermediate risk he's in a great position to live life to the full. 

Cheers 

Adam

User
Posted 30 Jan 2025 at 19:29

Hi Zoogirl. It’s a horrible time waiting for results … like you, I’m just trying to support my husband through it all. He didn’t want to know anything as he felt there was no point meeting trouble halfway, and it might turn out to be nothing to worry about anyway. My brain works differently though and I wanted to know the different scenarios that might play out so I felt more prepared. I’m very glad I did the “research” as it meant that I wasn’t blindsided by the results and also I understood the terms used in the discussion, so was better able to remember the conversation afterwards. Kenny (my OH) picked up quite a few things wrongly as it was all new to him, and he has relied on me to remind him of the details at times, and to re-explain what he was told. He’s an intelligent 63 year old so this isn’t an age thing, just the result of being overwhelmed!  I was careful not to use Google, but I read a lot on this forum, their main website, MacMillan Cancer and the NHS website. We haven’t had results or diagnosis given in person at any point - I think the policy varies according to health board.  It’s always been a phone call from the nominated cancer specialist nurse, who has been excellent. I’d strongly recommend that you check how to record the conversation to re-listen to it later. We asked permission to do this and put the call on speaker so we could record it with another phone. Hopefully all will be well, but if not you’ll be given options and be in good hands. I’m no expert but the low-ish PSA and lack of symptoms seem like a good sign. All the very best of luck, and do let us know how it goes. 🍀🍀🍀

User
Posted 30 Jan 2025 at 19:48

Hi

You are in many respects at the most worrying time awaiting results. Hopefully you get good news and the waiting for results will stop.  However if something is seem on the MRI they will want to do a biopsy and the waiting starts again. I know it is pointless to say don’t worry but there is little you can do until you know the outcome of the MRI. Don’t forget something seen on the MRI does not always translate to cancer even when further testing is recommended. As other posters point out normally, there can be a few exceptions, a low PSA is good news so that is something to hold on to. The thing about this disease is often it is asymptomatic so a diagnosis comes completely out of the blue. If and it an enormous if your husband is diagnosed with prostate cancer he is likely to have a lot of options open to him and there will be plenty of time to take important decisions.

Edited by member 30 Jan 2025 at 19:50  | Reason: Not specified

User
Posted 31 Jan 2025 at 05:34

Hi Zoogirl.

I had an MRI after a slightly raised PSA result from a routine series of blood tests, no real symptoms (until I found what the sympwere and realised I had several of them).

I got a phone call from urology a few days later, which I was completely unexpected as I'd been told it would take a couple of weeks. My mind immediately reasoned that the images needed doing again or something,  but no, I needed a biopsy based on the results. She had no idea why, just that they wanted to do one. With very little information to go on and alarm bells gently warming up inside I agreed to the biopsy. 

That's when the alarm bells went up a few notches. The consultant told me he had found two areas of concern on the MRI scan which he had scored 4 out of 5.

To say I was shocked is a gross understatement,  I was on my own, in a backless gown and suddenly things had gotten really serious.

Thankfully the biopsy process (transrectal under local numbing,  their preferred method) was pretty straightforward but some men do find it uncomfortable or even painful but I was lucky I guess. 

I was told I'd get a phone result within14 days. But I heard nothing in that time and rang myself after 16 days, obviously fearing the worst and completely resigned to getting bad news.

I spoke to a secretary with little patience and even less empathy. We are very busy dealing with people who really do have cancer, you've been discharged,  just wait for your letter! No explanation or anything. 

The letter told me even less, if I'm still worried about my prostate health I can ask for another PSA test but not for twelve months. IF IM CONCERNED! You bet I'm concerned. 

Sorry to waffle on, but I'm trying to say that the NHS has a really poor set up for dealing with these things. Some trusts do this, others do that, some have this piece of kit, others do not, some consultants like this way, others do things differently.  If I take my car in for a new clutch, it's generally always done the same way, rarely will a garage try to get the clutch out by crawling up the exhaust pipe. 

But with health it's a bit of a lottery. And the way you will find out information is pretty random too. Maybe your way,with a named nurse is better compared to my quick phone call after the MRI to say that for some reason they wanted a biopsy.

Just try to keep being supportive and patient with your husband and not to worry until there is something concrete to worry about. This may be nothing, as it was in my case. No one ever said to me "it's probably nothing" and therein lies the problem, every part of the process feels scary until it's not. Then you feel a fraud for wasting their time.. 

I truly hope your outcome is a good one like mine, but I know how hard it is to stay positive as you go through the mill of tests and waiting. 

Warm regards,  mick x

 

 
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