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Concerned about 14 day cancer referral

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User

Posted 14 Dec 2016 at 20:41

Hi both

Not sure what type of MRI, it was comprehensive though and it took about 45 minutes. No I did not have a biopsy. The consultant did not want to rush into this until the scan. I have other health issues and my medication makes the risk of complications much more likely - the consultants view not mine.

I told him that I was prepared to take the risk but he wanted to wait for the MRI first. To be honest he was not very nice at all. For the first 10 minutes of the consultation he did not make eye contact with me and it was only when I had the flow test that he realised I had significant symptoms. He seemed surprised at how poor my flow rate was. This is why he prescribed the Tamsulosin.

I realise that the scan is not diagnostic however, I understand that it can give a good indication about what is happening and if there is cancer, the likelihood it has spread.

I do not have a named nurse however, it was made clear that I would only be given the results by the consultant on 22nd. Unfortunately, our local hospital has not been rated well and the alternative NHS hospital is even worse. I am hoping that I can at least get an idea about what is happening and if necessary get a second opinion if I am not happy. I am hoping that when I saw the consultant on the 1st that he was just having a bad day and the next appointment will be better.

Feel anxious about it but I am starting to feel less so than before. I have had time to reflect and prepare myself. The information on the website has been really useful.

Thanks

Stephen

User

Posted 14 Dec 2016 at 21:29

Stephen

Have you phoned the specialist nurses from PCUK? They're brilliant at explaining things and would be able to help you identify questions to ask the consultant. I've spoken to them at each stage of my journey and they've been really helpful.

I had my MRI first and the results then show what sort of biopsy you should have. It helps them target the biopsy correctly. But my consultant who did the biopsy did tell me that he fully expected the biopsy to come back positive based on what he had seen on the MRI.

Walter

User

Posted 14 Dec 2016 at 21:33

Until recently the biopsy was always done first and the scan second - it is quite a new concept for some hospitals to offer scan first so although yours may be low-rated they are ahead of many more highly rated ones!!! Usually though, the purpose of the scan first is to help the urologist see where best to take the biopsy cores from - only a biopsy can tell you for definite that it is cancer, what grade and which type (there are at least 27 different kinds of PCa)

You are correct that the scan will usually show grey areas and how near to the edge they are (or even whether they have escaped) but a normal scan cannot tell the difference between infection, inflammation and cancer. To complicate matters there are some rare PCa types that don't show on an MRI - my husband's was completely clear but the cancer was actually throughout the gland and into his bladder. Fortunately he had the biopsy first so the consultant knew the scan results were questionable. If Mr Cheerful tells you on the 22nd that you are fine, you might want to think about whether you would feel more reassured by requesting a biopsy anyway?

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

User

Posted 14 Dec 2016 at 21:38

Lyn

I didn't realise there were different types of prostate cancer? Do they tell you which type you've got? And does it really make a difference if you know which type you've got?

Walter

User

Posted 14 Dec 2016 at 22:50

It makes a huge difference if you are unlucky enough to have one of the rarer ones. Some are extremely aggressive and do not respond to hormone treatment, some are more susceptible to chemo than others, there are some that are more likely to be eradicated by RT than by surgery, some like to go to the lungs rather than lymph or bone the way the common ones do, some produce no PSA. So if a man starts on hormones but nothing works, the oncologist may retest to check that it isn't small cell, squamous or mucinous prostate cancer, for example.

You should know which type you have, it will be on the letter sent to your GP which you may also have received a copy of. The most common form is adenocarcinoma, accounting for 95% of all cases.

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

User

Posted 14 Dec 2016 at 22:57

Lyn

Mine is adenocarcinoma.

Can they tell this for certain from the scan and biopsy? What am I really asking is could they come back at some stage and say we got it wrong and you've actually got such and such a type?

Walter

User

Posted 14 Dec 2016 at 23:08

If the pathology showed adenocarcinoma then that is what you have - they know what they are looking at in a Petrie dish.

There are cases where one turns into another - that is probably what happened to my father in law - but the behaviours and patterns are usually so unusual as to be obvious.

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

User

Posted 18 Dec 2016 at 12:36

Sorry had a horrendous cold!!!

I will certainly ask for a biopsy I may even consider going privately although I think the cost is quite high.

Interestingly following my cold my asthma has flared up and I am on oral steroids. These seem to improve my flow and the need to get up in the night within 24 hours of taking them. I will mention this to the consultant on Thursday. Not that I wish to take anymore steroids than I need to!

Stephen

User

Posted 18 Dec 2016 at 13:40

I suppose the problem is that we are telling you all this stuff but we have no idea of your other health issues or why the consultant felt a biopsy might be too risky for you. The specialists have all your medical details and will advise you better than we ever could.

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

User

Posted 19 Dec 2016 at 08:47

Hi Stephen

The other consideration is switching consultants. You could change the appointment and request another consultant, but do some homework and find out who is available and what their experience is. To date I have seen three, not through choice, and two have been excellent. The third I saw last week was a locum and it was simply a waste of time, and he referred me again to my regular consultant.

Don't rush to go private, as you may end up with the same consultant! More importantly, as referenced elsewhere on this site, you may not have access to the full range of post-op care through the NHS - if that is indeed what is required post-diagnosis.

Stay positive.

Chris

User

Posted 19 Dec 2016 at 13:52

Hi stephen,

I think you should trust you doctors to give you the right direction as i did with mine from my first blood test in April this year to my Brachytherapy in September, I am 70,(I you read my blog you will see i had no symptoms and was at the doctors for a different reason) but very please with the speed of their diagnosis.

I have only been on here for a few days and have already had loads of help and encouragement from members,just stick with it my friend and take advice from the professionals.

Regards John.

User

Posted 23 Dec 2016 at 05:08

Hi All

Have had a rollercoaster of a week this week. Saw the consultant yesterday after looking for the results of my biopsy it took him some time to realise I hadn't had one so that did not fill me with much hope!

Whilst he was faffing around I saw my MRI scan result next to my file. Whilst I know it is not a definitive diagnostic tool the results showed significant prostate enlargement but no evidence of cancer. It read that the prostate capsule was fully in tact and that the seminal vessels are normal. No evidence of any pelvic bone abnormality or spread. I had to read it several times before it sank in!

The consultant wouldn't confirm no cancer but he was reassuring that no evidence of cancer was a very good result and, has discharged me back to my GP for monitoring. At this stage I am happy with this and should I need to be referred again, I will be exercising my right to see another consultant at the same hospital who seems to be well respected in the UK. I wish I had seen him in the first place. Sadly I didn't feel that he cared about me as his patient and I would not be comfortable seeing him again.

At least now I am more informed and should I notice any changes or have concerns I will not hesitate to go back to my GP immediately.

I may consider having a private consultation for a second opinion but at this stage I am going to wait and see first. I have found this forum and the website so helpful and it has helped me to understand and equip me to deal with this head on! Thank you to everyone for your support and I wish you all the best of luck with your treatments and recovery.

I will keeping posting comments and hope that I can help other people, as you have all helped me. Thank you so much.

Kindest regards

Stephen

User

Posted 23 Dec 2016 at 16:42

a great result Stephen . Enjoy your Christmas and Best wishes to all on the forum. Elajai.

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