Post treatment MRI scan

Dearest  Jaycee12 and Serena7 

Just to say I’m thinking of you both. As you may have seen from my previous post the results of my early PET scan were great but I still have an MRI booked for 15 November.  The stress of these scans is so difficult so I completely understand how you both feel. I’m so glad to hear Serena that you have been feeling so great, gives us such hope as my recovery is frustratingly slow! I seem to get better and then I’m 10 steps back again! 

My “proper” results scan was always booked for November (3 months post end of treatment) but they did the PET early just to see how things were. I think a PET shows up any potential activity in a larger area and an MRI is a more detailed scan? At least that was my understanding. It may be that all hospitals are different and also not forgetting as mine is under health insurance and as we all know they’re scan and test “happy” as they’re making money as businesses! And on that front I cannot fault my care but in other ways, many people I know have had much much better continued care post treatment on the NHS. 

My oncologist has been fantastic in that he gave me his private mobile number so that I could contact him 24hrs/7 days a week during my treatment (which was a godsend) but the lack of proper nursing care after treatment was evident being at a private cancer centre rather than a proper hospital. Follow ups were scant and not properly followed up, in fact I often had to remind them that I needed blood tests etc. 

My GP realised I was lacking this care and did try to refer me to Macmillan but only to find out it diesn’t cover my home area! so I feel a little bit abandoned but I’m lucky in that my best friend is a cancer specialist/surgeon (albeit a different type of cancer) so I’ve somewhat been very lucky in that respect. 

Please both, keep us posted  Thinking of you and sending much positivity to you both! 

M xx 

Thank you, Prettypinkroses for your comments.  I know that you have really been through it and feel quite lucky in comparIson. It so good to hear that you had good results for your PET scan and I hope that your MRI is equally positive. It's annoying that you are not getting much aftercare but it's also pretty much the same here as it's almost impossible to get through to anyone.I am having my PET on Monday and will be seeing my Oncologist on Thursday next week for the results of the MRI and hopefully the PET.  I suppose we had better get used to all this waiting as it looks like that's how it will be from now on. But worth it when the news is as good as yours. Will let you know how I get on and hopefully we will hear something good from Jaycee too.  Serena x

Hi you all, it’s been 17 days now and have not heard back regarding results or appointment with oncologist. Great news about your PET scan Prettypinkroses. Serena I hope you don’t have to wait as long as I have. I watch a programme on tv this week about the shortage of radiographers in the UK which is massively delaying results. It is very sad that we have this shortage in supposedly one of the richest countries. I feel great and have no discomfort apart from early bowel movements as I mentioned before which is tolerable as afterwards I am fine. I have started to do some yoga stretches every morning concentrating on the pelvis as this is affected by the treatment the most. They gave me some dilators which I found difficult and bought some silicone ones which were a success. I read somewhere that the pink NHS ones don’t always suit anal cancer victims due to the are the radiation hits narrowing the area different to rectal or cervical cancer victims. I think I saw this on the American anal cancer website. They are worth a try if some are finding the pink ones difficult. Trying to stay positive but so wish I could get some news. If I don’t hear then think okay they have not said it hasn’t worked and feel okay. But on the other hand it’s frustrating. When I get the news I will celebrate. I just want to mention that about a month ago I too felt I was going one step forward and two steps back especially with the irritation and soreness but changed the creams various and it soon settled. We just have to learn to read our bodies more and it deserves our loving care as it’s been through so much! Julie x