Today I got my latest scan results which showed that every tumour in my body has either disappeared or reduced significantly. Hoorah!
Unfortunately, despite providing the NHS Radiology Department of York Hospital with A CD of images and report from my PET CT scan I had in Germany on March 14th 2017 and another CD and report from a CT scan with contrast that I had (privately) at Harrogate Hospital on March 24th, the radiologist claimed he didn’t have them so just compared last Friday’s scan with the CT scan I had in December. Thus even my oncologist hasn’t seen the images below.
It is so frustrating to go out of your way to spoon feed them and the information doesn’t even get from one person to another in the same department. My oncologist and the radiologist actually spent 20 minutes discussing my scan before my appointment (making it late), I evidently wasn’t relevant enough to be included in this conversation, despite the fact that this scan is probably the most important to me to date.
Yes, I am getting hacked off with the NHS!
The picture above shows images from a PET CT scan I had on March 14th 2017. The image on the left is my body from the top, then from left to right these show my body in slices backwards to the back.
A PET CT scan requires an injection of essentially radioactive sugar an hour beforehand which is attracted to tumours and lights them up so they are easy to see on a scan. So all the white bits on the above image are tumours in my body. It’s not pretty, they were in my legs!
Essentially I had tumours in my muscles, my bones, my brain and every major organ in my body apart from my lungs and my liver. The German Doctor who wrote the report on the scan came out to me in the hospital, shook my hand and wished me the best of luck, so I knew things were bad but not as bad as these images show.
What I had hoped to do was show a before and after set of images so that it was clear how much I have improved in just 10 weeks, but unfortunately I can only get a CT scan with contrast on the NHS as the budget available for people who are supposed be dead doesn’t run to a PET CT scan. A CT scan with contrast requires specialist knowledge to interpret; a knowledge of anatomy and an ability to interpret when the anatomy is not what it should be. I have the images but they do not show as clearly how few tumours are actually in me. I think I might arrange a private CT scan in the UK in a few months time to get a really clear picture.
But happily the oncologist told me that everything he’d seen on my January scan was either gone or significantly smaller and I know that all the tumours I could see and/or feel have disappeared. The fact I feel so good is the best indication of how much better I am.
So, we now have evidence that this leading edge treatment is working, this latest CT scan was done immediately after I returned from Germany, on 19th May 2017, so that set of treatment would not have kicked in. I also have another treatment in June so I have high hopes of being clear of this a month or so after that.
The June treatment is the last of the minimum course required (every 3 weeks for 3 months) so I asked my German oncologist “what next?”. He replied that once I have “no evidence of disease” (NED) I should go onto a maintenance treatment whereby I return every so often for booster treatment. The obvious questions here were “How often” and “For how long?. The reply I got was “I don’t know”.
I have now reached the stage where not enough previous work has been done on this sort of treatment to definitely know things like this. I’m apparently a trailblazer! We eventually settled on “every 6 months ….. or as long an interval as you want to risk” which is a bit unsettling.
The other consideration here is budget, each visit costs around £25,000 and whilst we’ve managed to fund it so far, the prospect of finding £50,000 every year for my treatment is somewhat daunting. My German oncologist suggested a possible collaboration with the NHS, i pointed out that he was somewhat more enlightened than those I have met in the NHS so collaboration would probably be difficult to achieve.
After a bit of googling we found out about Individual Funding Requests. These are a mechanism whereby clinicians can request funding for a treatment not routinely provied by the NHS, not normally funded or not yet approved. There are numerous caveats but basically if there is evidence that a treatment is working and will bring definite benefits the NHS can fund it specifically for an individual patient. It looks like this is something we could possibly use to help with the costs.
This drugs I am being given are approved for use within the NHS but not for my specific cancer, however I think I have enough evidence that they work on my form of cancer and that I will definitely benefit from them. My tumours have almost disappeared after only 10 weeks and more importantly; I’m not dead despite all predictions that I should be. Worth giving it a go? Definitely!
So we suggested it to my NHS oncologist. We didn’t just suggest it; we had printed out a number of academic papers showing that this form of treatment is showing great promise on a number of types of cancer and specifically and we also provided him with the application form and guidance from The Vale of York Clinical Commissioning Group. The guidance clearly shows my case is suitable.
His response? “I’ll put it in but it won’t get granted”
Well it definitely won’t if that’s the attitude we’re starting from!
The various “reasons” given for it not being granted began with budget and finished with the statement that because the treatment had been given privately the NHS would not take on the funding. I pointed out that the only reason I had had to go to a private clinic in Germany was that neither the NHS or any private doctor in the UK would give me the treatment. So what they are saying is they won’t give me the treatment and then they won’t fund it even though it is working because they didn’t start the treatment. Some catch 22 that one!
I’m sure he will put the application in but I’m also sure that we need to look elsewhere for someone further up the NHS food chain to take up our cause. Somebody must be doing research on combination immunotherapy treatment and you’d think a patient that has survived over 2 years from being told they were terminal (when patients with my condition normally die within 6 months) and has proved immunotherapy treatment works for their condition would be of some interest to them. We’ll try and find someone.
We also think we need to get some publicity to put some pressure on the NHS. I’m not the only person in this situation, there are tens if not hundreds of people who are refused treatment or told there is nothing more that can be done for them, who then try to fund treatment overseas. Just go to gofundme.com and search for cancer, its shocking. So we are going to try and get some of the papers and maybe the telly interested.
I’m beginning to realise why so many people refer to their illness as battling cancer, its not just the disease you battle with, it’s the almost third world medical system in the UK that you have to battle with as well. Sorry if that offends but I’m talking from experience.