Heads up.. seriously long post..apologies x

User

Posted 22 Nov 2022 at 23:19

Hi..hope everyone is as well as can be expected.

We are new to this and i was wondering if anyone can help shed more light as I feel we have just been left hanging. Initially, out of the blue at a non related appointment my husbands doctor asked him if hed ever been tested for prostate cancer. So from here he got his bloods done and psa was 19.6 i believe.. so then done again and were 16 something and his white cells were high ..so doctor done an examination and told him his prostate was quite enlarged and was red flagging him to the hospital.. within a day or two he had an mri done and waited 2 weeks or more on results which had been in but consultant was busy with surgeries and we weren't told anything..obviously beside ourselves tortured our own gp..who eventually rang my husband at 5.30 on a friday evening and apologised to him and said im sorry for the bad news but it has came back there is cancer there..this is the next step..blah blah blah..ive prescribed you some diazapham..probably havnt spelt that right lol

So we are awaiting a biopsy which can take up to ten weeks for appointment .. but it all just seems so surreal.. would.a doctor tell him he had cancer if he was not 100%.. dont u need a biopsy to say its cancer..what did the mri show that doctor could positively say there is cancer there..

Hubby always extremely tired..already cutting hours at work down due to tiredness.. took bouts of nosebleeds..which he has never had before.. peeing got even harder.. and now feeling dull pain in his groin and very sore testicals and his stomach is.just.killing him.. is it related..maybe its stress..

The cherry on top is how depressed he has become.. literally sits with his head in his hands and barely speaks..its very hard to watch and i feel totally useless even tho im doing my best to either act normally or also let.him.know im here..talk if u want.. he is 61.. im 47 ..

Then when u talk to friends they're like..but he looks well,.if he was sick he couldnt work.. they don't think he has cancer..so again brings.us back to.our gp..why would he say that if there was no proof..or is there..thought thats what a biopsy was for....just dont understand any of.this and the macmillan nurse from.hospital, whilst Lovely..just.keeps.saying we're on a pathway.. and doesnt really answer anything were asking.

I am so so so sorry for.the length of this message.. I thought psa of 19 was high but then read here some.had 60 or 90..its all just a minefield..

Any help or guidance that u can would be greatly appreciated xx

Edited by moderator 23 Nov 2022 at 09:04 | Reason: fix formatting

User

Posted 23 Nov 2022 at 00:41

19 is high (a man should be referred to urology if his PSA is higher than 3) but a man can have a PSA of 80 and not have cancer. The highest reading we have ever seen on here was 13,000.

You are correct that prostate cancer cannot usually be diagnosed until the biopsy has been done - the exception is where scans show that the cancer has already spread significantly. I think if the second situation applied to your husband, the Macmillan nurse would have told you. So you have two possible situations - either your GP has panicked / over-reacted to the PSA and some kind of notification from the MRI report that a biopsy is needed OR the MRI could see that the cancer was already outside the prostate and the GP has read the report.

In normal circumstances, it would be totally unacceptable to have a 10 week delay for the biopsy so common sense says that whatever they have seen on the MRI, they don't think that urgent action is needed - if it was really bad, I think they would have put your husband onto hormone treatment by now. Not much comfort for your husband right now as this is all guesswork but it is possible that the bad news from the GP is not totally reliable and has been caused by him feeling pressure to give you some information. This is the hardest time for your husband - he might have cancer but he doesn't know for sure, isn't sure how bad it is and doesn't have a treatment plan; things will get better once he has facts rather than his imagination.

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

User

Posted 23 Nov 2022 at 08:26

Hope your 'probIem' is soon clarified & hopefully resolved.

I am 75 & went through the diagnostic 'loop' a couple of years ago, with a PSA of 11 - my MRI suggested that a further investigation was necessary but no cancer was found in the subsequent biopsy. My PSA has now climbed to 19.2, I have had another MRI with another biopsy scheduled for tomorrow.

Can I suggest that you ask for an urgent appointment for a 'face to face' session with your GP to go over exactly 'where you are' - one way or another he / she hasn't communicated with you very well & has just 'fed' your concern at what is already a very stressful time. I imagine that your GP would be as keen to resolve any possible misunderstanding as you are.

Best wishes

User

Posted 23 Nov 2022 at 10:05

Wifey, I was diagnosed at 62 PSA 7.7, a raised PSA of 6.9 was missed three years earlier. The only symptoms I had was terminal dribbling, which in hindsight started when I was 50. I had no aches and pains in the pelvic, stomach area.

It could be an infection, many GPs don't understand what a PSA should be after treatment perhaps some misunderstand PSA before diagnosis.

When I was being diagnosed I selfishly shut out my much younger wife, it was my body, my problem and I was going to deal with it my way.

I worked with a guy who had fluctuating PSA that went over 100 and despite trus and guided template biopsies they didn't find any cancer.

Waiting is the worst part, stay positive.

Thanks Chris

User

Posted 23 Nov 2022 at 11:22

This is an area where many GP's are not fully versed and apart from more detailed investigation with his GP, I suggest he is copied into all correspondence with his hospital as he is entitled to this. If there are medical terms he doesn't understand he could ask the specialist nurses on this charity for clarification.

Ignore all opinion of people who say he looks well. Many men who do have PCa not only look well but even exhibit no symptoms.

Unfortunately, there can be long delays between tests scans and treatment where required. Active treatment is not always required. Depending on a number of factors some men are just monitored, called active surveillance. Time for a full diagnosis and some radical treatments can vary with local lists and some men decide to have a treatment they are suitable for at another hospital or even within trials.

Then there is the matter of how well individuals respond to treatment which can vary, particularly depending how advanced the cancer has advanced, along with other factors. A man may have to be monitored for many years because PCa can need to be further treated even years later. Best outcomes are usually achieved where men are diagnosed early.

From what we have been told it seems highly likely that hubby has PCa. I would you suggest you download or get a copy of the 'Tool Kit' if in print again, from this charity. It gives basic information on what is a complicated disease and various treatments, some of which not all men are suitable for. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

Edited by member 23 Nov 2022 at 11:22 | Reason: to highlight link

Barry

User

Posted 23 Nov 2022 at 12:59

Hi Wifey, my Dad is also in the same boat.

He had a PSA reading of 16 back in July and has gone through the whole testing process (biopsy etc) and has an appointment with the urologist tomorrow (hoping it is the results but just had a normal appointment letter.) He was also told by the MRI scan than it is 99.9% cancer before biopsy but hasn't had anything to back it up.

The waiting is the worst and has took over 4 months from his PSA test up until now, we are hoping that no news is good news and the 4month period is a positive but who knows these days.

Fingers crossed for you.

User

Posted 23 Nov 2022 at 18:18

Thankyou so much for your reply..taking everything on board and feeling a little more settled..trying to ring doctors for that face to face x

User

Posted 23 Nov 2022 at 19:45

Sorry you are here and having a difficult time at the moment.

As others have said the waiting for results and not knowing is just the worst part. It does seem unusual that they would diagnose cancer before a biopsy. We were told after the MRI that it was highly likely to be cancer but not confirmed until biopsy/bone scan done even though they suspected spread to his pelvis.

My husbands PSA was 8.3, it had spread to a lymph node but not to the bone as originally diagnosed. He’s nearly 12 months on from his op removing prostate and 14 nodes, life is very good again and he has an undetectable PSA (hoping it stays that way 🙏🏼).

Things will get better when you know more regardless of the outcome, however I will have everything crossed that it’s good news for you and no cancer.

Best wishes

User

Posted 23 Nov 2022 at 21:02

Originally Posted by: Online Community Member

Hi Wifey, with a not excessively high psa of 19.6 it's unusual to have these symptoms from Prostate Cancer. Tiredness would normally be a later symptom. Nosebleeds doesn't sound like anything related. An enlarged prostate is common and makes peeing harder and dull pains likely, and take the psa up to 100 or more. What does the GP say about the nosebleeds and tiredness. High blood pressure, stress related? Has he had Covid etc?

User

Posted 23 Nov 2022 at 22:16

Hi Wifey

When diagnosed 7 months ago I had a PSA of 2100,I went to my GP (of which a formal complaint is ongoing with NHS England)4 months earlier with terrible pains in the groin/stomach area like the feeling of being kicked in the nuts!I also then noticed a lump in my groin then my right leg began to swell,I was told it was an inguinal hernia!!!! How wrong they were 😪

Regards Phil

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