I had a big decision to make when coming up with the title of this blog… add a question mark or not?
I had another PET scan last week, in a wagon, we are trying to find out if the spot of residual uptake in my neck is gone after the Radiotherapy, if it remains the same (as it has done since the first after treatment scan in May) and so poses little threat, or if it had grown (or anything else has – for that matter). Depending on what it shows will determine if I am in remission, or if I require 2nd line treatment.
For those of you who don’t now (and why would you)? A PET scan is a Positron Emission Tomography scan and it is combined with a CT scan to diagnose and follow-up treatment to cancer patients. The scan involves being injected with radioactive sugar then waiting for an hour whilst the sugar moves around your body. You then go into the scanner for another hour whilst the CT scan matches up the areas where the sugar has gathered with your anatomy. This works because cancer cells are fast growing cells and metabolizing a lot faster than usual cells, requiring a lot more energy. So when sugar enters the bloodstream, the cancer absorbs it faster than anywhere else, creating hot spots of radioactivity. If you don’t have cancer then the sugar dissipates evenly around the body and you don’t seen the hotspots.
in this scan you can clearly see an active tumour in the patients chest
But here’s the thing… infections \ inflammation also like sugar as they also demonstrate hyper metabolic activity. In the picture above (which is not me) you can see the kidney’s lighting up a bit as the sugar is excreted. Reading a PET scan isn’t straightforward, especially when dealing with small, dim lights like mine. PET scans are notorious for false positive results with regards followup (of borderline cases).
Now, PET scanning is a dear do and so the NHS don’t actually own any of them. On my trial I went to a permanent facility in Preston (run by a private company for the NHS) so that the machine was consistent. It was a fancy place with comfy chairs and nice big preparation rooms. Now that I am off trial I get the local version which is, unbelievably, a scanner on the back o f a lorry. Alliance medical run 4 of these lorry’s around the country offering the service to patients who may otherwise have to travel a long way for the scan. unfortunately this makes the facilities very temporary and portable. So I have to wait in a shed and then get injected in room that, at 6ft 3, I can’t completely lie down in. It’s also the same room where they keep the radioactive sugar! Then, if they are busy which they always are, you get shifted out of the tiny room half way through the rest period and go and lie down on the scanner itself – all whilst trying to relax! Oh and every time you move between rooms you have to squeeze past the technicians who run the scan, smiling and pretending everything is great when in actual fact you are cr*pping yourself!
I used to hate PET scanners, they have never been good to me and only ever confirmed that I am not quite yet in remission… thanks! in fact, I would have passed a bog standard CT scan already. But then a friend who is also in treatment for Hodgkin’s explained that to him the scanner is like an old friend who is just telling you the truth, even if you don’t want to hear it. The scanner is only showing what’s going on. It’s saying, “listen, mate, I know you’re looking good and all, but you may wanna check out your neck eh?“
Speaking of my friend who came up with the new theory that PET scans aren’t all evil, I want us all to send some good vibes to David down in Coventry (UK). Like me, David followed the RATHL trial and like me he failed the first PET scan (damn you PET… ) and was moved on the BEACOPP regime. unfortunately for Dave his next scan, though showing improvement, still hadn’t cleared the Hodge and so David has moved onto 2nd line treatment, autologous stem cell transplant. For Dave this means more chemo and a few stays in hospital. He still has a great chance of cure because his Lymphoma was responsive to chemo, but as it means super strong chemo it is getting rougher for him that it ever was for me so please, send him some love an hugs to get him through the down days, I know he will be reading this (if he can tear himself away from the PS3 game I have managed to get him hooked on… sorry about that Dave).
Although it pales in comparison to what Dave is going through, I am suffering from scan related anxiety (scanxiety), I spend days certain that the scan will show more hotspots, I rationalise, I feel better, then I cough… once… and the panic comes back. Previously this has manifested itself via itching (I kept thinking my itching had returned) or constant neck prodding, but this time I decided I couldn’t breathe very well and so my chest mass must be back. Is it back? Maybe, but it seems unlikely given the fact my chest has been clear since May and that I passed a pulmonary function test only a few weeks ago. Then I practically ran 2 miles to Anfield yesterday and then back after the match and forgot that I couldn’t breathe. I beat the anxiety and since then the breathing that had been troubling me for 3 or 4 days has been fine. Whatever next?
Well, whatever it is I must remain calm and in control. I can’t spend the rest of my life worrying about a cough and imagining symptoms that create worry so I guess this brings me back to my opening statement, add a question mark or not? Am I brave enough to believe that I am finally in remission or do I waste time worrying that I am not?
I didn’t add the question mark.