The Smiths and NHS - Prostate Cancer

[Battleaxe]

This might help someone. it started in February this year and to up to date of writing the Health care Commission is now involved and it is to do with funding, and PCT's plocices regarding cancer treatment.

MOTH was diagnosed with prostate Cancer, grade 7 Gleeson score PSA 19.4. Tumour T2 (this is the important bit).

After several bungles with the local hospital Hinchingbrooke, we finally got to see the oncologist. Suddenly MOTH's tumor is T3, all in the space of a week. I immediately queried this. Last week it was T2 and now it is upgraded. the oncologist said with a very straight face, oh they over report these tumours. he had never even checked things for himself. He asked me how i knew it was a T2. After telling him of my connections and that i had seen the MRI, he paled and insisted that MOTH has the standard treatment of ERBT and was going to s tart him on hormone therapy. hang on buster, no, this is not the correct treatment. there are alternatives available and by golly you are going to provide the alternative treatment instead of the radiacl debilitating treatment because you are happy to accept a higher grading without review. I insisted that MOTH be referred to Cookridge Hospital for review, meaning right out of the local PCT area and for good measure we also wanted a review by another oncologist/surgeon at Bassingstoke. I had unleashed hell. reluctantly the local oncologist agreed to a referral to Cookridge. I knew the letter of referral would be biased. So I immediatley wrote to the Cheif Exec outlining all the problems we had had to date with the diagnosis and the mismanagement of the correct protocols. BINGO. I ended up with a CD Rom of all of MOTH's investigations and his notes, which i promptly bundled up and sent to Australia and the USA, back came the report T2 tumour definitely not T3. Oh none of this cost a penny to obtain.

We got the appontment at Cookridge, guess what T2 and yes Brachytherapy could be done. MOTH's PSA by this time had dropped to 15.2 and was still dropping. Found it depends which laboratory does the testing and what time day blood sample taken, also diet impacts on the readings..

Long and short of it brachytherapy done, but local PCT will no longer fund this treatment out the area, so the men in this area diagnosed with prostate Cancer will be condemed to ERBT if the their tumours are misgraded and their PSA'a are too high. Cost of this treatment is about £20,000.00, but no debilitating side effects, able to return to work within three weeks and no other side effects (there can be side effects such as urininary problems, but these will usually resolve within four to six minths). If MOTH had had the ERBT, bowel and bladder burnt, incontinence, no sexual function and not able to work, therefore drawing social security sickness benefits. He is definitely not cured, but his PSA is now around 1, he has had a urinary infection, now resolved and quality of life nearly normal.

The local hospital has weasel worded their way regarding MOT's treatment and mismanagement of his case, so we involved local MP and no wht complaint has escalated to HCC for investigation. if I had not been on the ball, I could have a larger battle on my hands.

They are hiding behind the West Anglia Cancer network protocols, which clearly are not good practice.

Moral, don't believe what you are told, research and yes the PCT can be made to toe the line if you are prepared to stand your ground and write letters of complaint following the NHS guidlines and make sure all your questions are answered fully.

I have been told I should let it drop, but no way. What nearly happened to MOTH, I am not going to let happen to another man.

Maybe the local NHS healthcare Trust should not have made me redundant, because I have the corporate knowldege on how the fight the system.

Yes, they will stick together, it is just knowing how to put that chink in the armour, and then picking away.

We are facing a long five years now with the Big C, but this experience has certainly made me a street fighter for the underdog.

If I hadn't been made redundant, if the bank had not let our account be leached by internet fraud, if I had not been so stupid to believe someone and work for them on a handshale and lose over £1,200 in wages, maybe we would not be in the position we are in now, but what I have learned along the way these last couple of years, I am going to help others avoid the problems we have encountered.

Now that is off my ample bosom, I off to see the ladies at the local post office have another recored delivery letter to post.

[Giant]

Hi Battleaxe,

I am very interested in some of the things you said because there are certain similarities with my situation.

Fortunately my GP is not slow to refer me to a specialist if he has any doubts about anything and whilst asking for my blood to be tested for something quite different, said he would ask for the PSA to be checked at the same time.

My PSA came back as 17 so a Biopsy was quickly arranged and the multidiciplinary team said I was 3+4=7 Gleason and a T2a. I was started on a monthly course of Zodadex hormone injections and was subsequently informed that the MRI scan which had not been available at the time showed I was a T3a because one of the lymph nodes was enlarged and affected by diameter of 8mm. This was confirmed in writing. However, I asked for another meeting with the Oncologist to discuss possible alternatives to the photon x rays which is the only beam radiotherapy in the UK (other than for eyes for which there is a low powered Proton Beam facility at Clatterbridge.) I also wanted to discuss the randomised hyperfractionated IMRT Clinical Trial I was invited to take part in.

Imagine my surprise and relief when the Oncologist mentioned, almost as an aside that they had had another look at my MRI Scan and decided my lymph nodes were clear and that a second MRI Scan scheduled for January would be cancelled and the lymph nodes would not be radiated! I too had been caused more concern than necessary. By the way this was at the best known Cancer Hospital in the UK!

Turning now to the proposed treatment. I was told that Ablatherm HIFU was now only used as a salvage operation by that hospital if radiation failed and was not recommended. Brachytherapy was not mentioned but I have seen elsewhere that it has it's own problems by way of side effects and by itself is no more effective than IMRT. However, I have read that used in combination with IMRT high dose Brachytherapy gives good results.

Must say I am rather dreading having IMRT where even in this advanced form because of the nature of photon x-rays much of the radiation dose (abbreviated to Gys for Grays) causes collateral damage on it's way to the tumour and on it's way out.

There are facilities in the US and some other European countries that use Proton radiotherapy. This is superior from two aspects. Firstly, little of the dose causes damage on the way in and even less on the way out thereby causing less collateral damage. Secondly, a bigger proportion of the gys are deposited on the actual tumour due to the 'Bragg Effect'. Regretfully, Britain is lagging behind in building Proton and the even more advanced facilities that Japan and Germany have that can provide Carbon Ion heavy particle radiotherapy.

I am seriously considering blowing my savings (as can't see my Primary Care Trust helping fund my treatment) and having this abroad.

Interestingly, the aims are for cross border healthcare for member Countries of the EU. I read that the EU commissioners are due to announce proposals for this later this month but with various systems and countries fighting their own interests don't expect agreement soon. However, in some circumstances individuals whose PCT's have refused reimbursement have taken their PCT's to the European Court of Justice and won. So eventually you will be able to have your treatment in any EU member state. For the present at least - and possibly always, you will have to get prior funding from your PCT.

Well that's enough for my first post!

Best wishes and Happy Christmas to all.

Giant.