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Introduction Shaun

User
Posted 29 Nov 2020 at 16:26

Hi my name is Shaun I am 50 years old and have been really fit and healthy up to this point. On Oct 10th I started getting symptoms of UTI and started a course of antibiotics, these didn’t SSP anything and after a week went to the Gp who said I should have prostate exam which showed that it was enlarged about  30 cl and firm on one side and put on ciprofluxin. I was referred to consultant at Medway hospital where he reviewed my PSA which was low about 1.0 sorry I can’t remember the exact number he performed exam and confirmed it was enlarged and I had pain when pushing on one side and firm and a nodule on outside and recommended an MRI I was also given another course of antibiotics. I had a telephone consulatation to review the results where he stated that there wasn’t a nodule on the outside but there was a lump on the inside and that I should have urgent biopsy. This has all been a bit of a whirlwind and I don’t have any idea about the details of my personal case and as such am thinking the worst possible prognosis. So could someone please help me with some advice, I want to take back control of the situation and understand all the information I need. What questions do I need to ask about PSA, mri and biopsy, should I get second opinion as to whether I need a biopsy, what type of biopsy should I push for he said he was trying to organise a perineial one but I have recieved some information about a TRUS procedure. How long do biopsy results generally take to come back? Should I consider going private, can I get referred to UCH with the NHS who are the best consultants in this feild. Apologies for the ramble but been awake all night :)

User
Posted 29 Nov 2020 at 21:33

Hi Shaun,

Relax, I know it's easy for me to say that, I'm not going what you are going through, but I was three years ago. You have quite a lot of worries and concerns. I think we can start with the good news, psa is not very high. You have symptoms of UTI so this is probably a UTI not cancer, though it is a shame it did not respond to antibiotics. Not quite so good is the abnormal DRE, and the fact the consultant thinks it justifies a biopsy (though they always want to cover their arse, so anything other than completely normal will trigger a request for a biopsy).

Whatever happens remember prostate cancer is very slow so there is no immediate hurry. NHS takes cancer seriously, so I would not go private unless you have insurance and it won't cost you anything. 

If possible Mri should be done before biopsy, as if it is done just after a biopsy, it is hard to spot cancer as opposed to the damage caused by the biopsy. I think tranperenial biopsy may require an operating theatre, and they are scarce at the moment, so you may have to accept a TRUS biopsy. Biopsy results take about two weeks to come back. 

I don't think there are any questions you can ask or anything you can do to take control of the process, at this stage it is just go along with the tests. When they call you in for your biopsy results there are plenty of useful questions to ask so definitely post on here and ask for advice before that meeting. 

Keep us informed about your appointments, we'll give you as much help as we can. 

 

Dave

User
Posted 29 Nov 2020 at 22:20

Hi Finchie,

I can understand your concern but you have had an MRI and a lump has been found. The next step is a biopsy. A Template biopsy covers a greater area but this is a theatre procedure and it could be quicker to have a TRUS in the area identified in the MRI. It would be unusual to have a second opinion at this point and would probably lead to further delay as might changing to UCLH. After the cores taken in the biopsy have been studied in the lab, the results are considered along with other tests at the next available Multi Disciplinary Team meeting and a diagnosis made. This could be further delayed if a bone scan is thought necessary. The patient is then told the treatment options that are open to him. Some patients seek a second opinion at this point, (I did) but again this could lead to delay. Some hospitals are more affected than others due to pressure of the current pandemic. Even going private does not necessarily put you in front of the queue or have different treatment than what would be offered on the NHS.

UCLH (UCL) certainly do good scans and are leaders in Focal Therapy but most men are unsuitable or don't want this niche treatment, so most people have surgery and RT where there are plenty of good surgeons and RT at many hospitals.

If you have not yet done so, I suggest you request to be copied into all correspondence between your hospital and your GP as you are entitled to do. I have to say that as a patient of UCLH myself, it can sometimes take weeks for paperwork to catch up although a diagnosis should be quicker.
Barry

Edited by member 29 Nov 2020 at 23:49  | Reason: spelling

Barry
User
Posted 29 Nov 2020 at 23:45
John is waiting for some private treatment at the minute but due to Covid, has been put behind the NHS patients in the queue - Spire, Nuffield, etc have agreed contracts to pick up a lot of non-covid NHS patients.

Pure TRUS biopsies are going rather out of fashion but in cases like yours where they know which bit they are aiming for, it seems sensible to take that option rather than delay diagnosis waiting for an operating theatre to come available. Plus, it may be that you are being offered an image guided TRUS anyway.

With a firm prostate, a palpable lump and a suspicious MRI, I think a biopsy is not only advisable but essential.

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

User
Posted 30 Nov 2020 at 00:02

Oh yes, I will add a suggestion we often make to people who may have Prostate Cancer (PCa). It can help patients if they learn more about the disease, the various treatments and potential side effects. To this end we recommend the 'Tool Kit' be downloaded or a hard copy be obtained as from here :- https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

The above link also gives the number for the excellent Specialist Nurses to whom questions can be asked.

Edited by member 30 Nov 2020 at 00:07  | Reason: to highlight link

Barry
User
Posted 30 Nov 2020 at 12:13

Thanks all for you replies much appreciated I hopefully have a call with my consultant today and and will take your feedback on board in the discussions.

User
Posted 30 Nov 2020 at 12:14

Hi,    I'd recommend going with the flow.   Around Christmas I wouldn't be taking a chance with looking for alternatives if you've been offered diagnosis.   

I had 2 appointments in the week between Christmas and New Year to remove my operation staples and then to remove the catheter although I recall the waiting room was pretty empty.

Biopsy results can take up to 2 weeks.   In general they have 31 days to diagnose cases although at the moment that seems to be going adrift.

It's worth noting that it's possible to have a lesion and for it to be a low grade and not changing or growing very slowly and it might be benign.   A psa of 1 is very normal which could be a good sign but I'd retain some caution based on your scan and the physical inspection.

I recall having some solace from knowing it was found as I had no obvious symptoms. Just a bit longer could have been very unfortunate.  I'd say keep focused and take appointments as they're offered although if they're too long you might accept and look for alternatives.

Good luck
Peter

User
Posted 30 Nov 2020 at 16:52

Hi Shaun, have you had the MRI or are you still awaiting it? 

Dave

User
Posted 30 Nov 2020 at 17:27
My reading of it is that Shaun has had the MRI which indicated an area of concern which is why an urgent biopsy has been recommended.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Nov 2020 at 17:40

Hi yes I have had the MRI I spoke to consultants secretary today to try and get some more information she is sending me the MRI results, but stated that it is PI-Rads 5 score which I obviously know is the highest rating, any open thoughts on that would be appreciated. I am getting a perennial biopsy procedure but am waiting for the appointment. Thanks for your replies it’s been really helpful. I am feeling healthy and an generally really healthy and fit  but did black out very briefly Saturday night and was taken to hospital to rule out heart problem, all my bloods and tests came back ok and I no longer have a urine infection although they stated my urine was concentrated and that I may have been dehydrated, so gave me intravenous fluids. So could anyone tell me whether this is normal I am trying to stay hydrated but do urinate a lot and was still on citrofluxin at the time

User
Posted 30 Nov 2020 at 17:46

I should also have stated my PSA was 1.9

User
Posted 30 Nov 2020 at 19:38

OK pirads5, so yes very likely you have cancer. Still don't panic. Low psa and consultant saying it is a lump in the prostate not a nodule outside, it sounds like this is still contained within the prostate. So very curable.

Blacking out and dehydration don't sound anything like prostate cancer symptoms. I think that might be shock.

The mri report might be incomprehensible, but if you post the details on here someone may be able to help.

Were you planning on having children? if so you need to do something before treatment starts.

With the mri report and the biopsy results the consultant should be able to tell you how much cancer is present, if it is in just one area or spread out, if it has escaped from the prostate. Then a way forward can be planned. If this is small and a gleeson 6, Active Surveillance may be offered, give that serious consideration; prostate cancer treatment is not dreadful but if you can avoid it I would. 

Dave

User
Posted 30 Nov 2020 at 19:45

Thanks Dave 
I appreciate your response I will hopefully have the MRI results in the post the next few days so will post them here when I do. 
once again thanks for your help

User
Posted 30 Nov 2020 at 19:47

I wasn’t planning on any more children I have 3 daughters so all good on that front thanks apart from them having to go through this journey with me

User
Posted 30 Nov 2020 at 20:38
We did have a guy on here recently with high PSA and PIRADS 5 who subsequently got the all clear. It is right to prepare for a positive diagnosis but it isn't an absolute cert yet.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Nov 2020 at 21:05

Thanks Lynere

I am hoping for the best and preparing for the worst always good to be realistic in my opinion

User
Posted 30 Nov 2020 at 23:57
You don’t want a perennial biopsy, once in a lifetime was enough for me.😉

You will be having a transperineal biopsy, and the confusion is understandable, as ‘transperineal’ is hardly common parlance (except here).

Best of luck.

Cheers, John.

User
Posted 14 Dec 2020 at 15:20

Hi I had the transperenial Biopsy last Tuesday and have a telephone appointment tomorrow to discus the results and I would like this forums advice on what questions I need to ask to ensure when I come off the phone I have all relevant information.

Thanks Shaun

User
Posted 14 Dec 2020 at 18:45
I have responded on your new thread.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Dec 2020 at 20:19
Shaun, I’d suggest having one thread on which you record your cancer journey and ask any questions that may arise. It makes things much easier to follow than having everything all over the place!

Best wishes,

Chris

User
Posted 14 Dec 2020 at 21:05

Thanks Chris 

I will do in the future was a little confused as you are giving options on where to post but thanks for the advise I will just keep one thread thanks for you reply

 
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