I’m just airing a couple of thoughts with my husband and he suggested airing them on here as you always offer valuable responses.
It’s coming up to my four monthly check up. Last year we (myself and the consultant) decided that I would not have any more scans. The reasoning behind this was it may show progression but I still may not require treatment so wasn’t worth knowing or not? The consultant said that if my follicular lymphoma progressed it would show in symptoms. I thought I’d give this a go.
I’ve been ok for a year. However, my anxiety has peaked. I really want to request a scan. Are you able to request scans? Can the doctor refuse? Do they have to take into account your emotional and psychological well-being?
Hi Nichola, really good questions and I am sure you are not the only one to have these going through your mind. I think many of us have probably got heightened anxiety with the virus at the moment anyway. Personally, if I want something I now ask for it and get my medical teams response, they can only say ‘yes’ or ‘no’ and I am even brave enough to ask for or question their reasonings. I think it is OK to say that something is really causing you anxiety too. What I have realised is that often medical decisions are not just taken on one factor but several different ones. I also write down everything I want to say to my medical team including my fears thoughts, feelings, questions, symptoms and practicalities so I don’t forget anything. Please let us know how you get on and take care of yourself.
Hi Nichola,
I had a couple of PET scans, as well as CT scans, when I was being treated for Hodgkins Lymphoma. Mine was an unusual presentation, compromising my heart and a lung, and I had a big mass removed from my chest area. My PET scans, taken part of the way through chemotherapy, and at the end of treatment were passed as negative. A couple of months after chemotherapy finished I started to relapse, and whatever chemotherapy I was given only worked a short time. At a consultation for stem cell transplant the haematologist said that I obviously had a naughty cell that kept hiding when I had a scan!
I think what I am trying to say is
Are you having any new symptoms?
Would your anxiety be alleviated if you had a scan of some sort?
If you had slight changes on your scan how would you feel if the consultant still said it had not progressed enough to need treatment?
It is normal for anxiety/stress levels to rise as we approach check ups, even a few years after treatment has finished (as in my case, although I was discharged 18months ago). It may be that the consultant may already be anticipating you having a scan as it is a year since your last one.
Whatever is decided, I hope you are able to release some of those anxious feelings, perhaps by talking to your CNS if you have one, and we are always here for you. Take care xx
Very interesting topic. One key question to ask is what is the risk/benefit relationship? No medical procedure is without risk, and those using radiation are possibly of particular concern to those of us with blood cancers. In my own case, the mutation which causes the Thrombocythaemia suggests that certain of my chromosomes are relatively unstable. Zapping them with radiation could trigger my ET into transforming into AML, or increase the already high probability of Myelofibrosis. Three years back, the urologists were very keen to start me on intensive radiotherapy for prostate cancer, and were very narked when I questioned the risk/benefit of this. The question has now arisen again, so the whole topic of radiation of any sort is rather close to the forefront of my mind. Of course, as a family, we are probably hypersensitive about this, as my wife’s doctoral supervisor was Prof Alice Stewart, who did the original work on the link between childhood X-rays and leukaemia. Just my two pennorth.
You’re definitely right about weighing up the risks and the benefits, especially in your case. It’s a very difficult decision. I had a good discussion with the consultant and we have decided a scan might be a good idea as I’ve been feeling uncomfortable.
Thanks for your advice and I hope things with you go well x