Hi, I have not been diagnosed with cancer, my concern for thinking I may have it is due to the amount of radiation exposure I have had in the last few years, as some of may have seen I have been struggling with bone pain and have tried to get information from others who may have had that what us was like to compare.
Another rather annoying increasing symptom, very hard to describe, it is that my skin Feels sore but not to the touch, it isn’t in any one particular place but like small electric shock type feelings almost anywhere in my body and even my Lips and mouth feel sore. It lasts a few seconds to minutes then goes away. But I think it’s becoming more frequent. I have had a couple of blood tests and even blood film done all of which have been reported as normal but I seem to be unable to reconcile that with my feelings as above and general malaise. I checked with the hospital today and found out that the scans I had used at least 25 msv which is a lot I think. Any input welcome. Thanks Al
Hi @Red1, I would have thought it was good news that you have not been diagnosed with cancer. The symptoms you are struggling with are really something for you to discuss with your GP, it is not something we can help with on this forum. I hope this helps you to resolve these issues. Take care of yourself, Al.
Thanks, I understand your point of view. I have been discussing it with my GP but don’t have any answers.
However I have read that in rare circumstances that some patients with leukemia suffer bone pain which is one of my biggest issues but have normal blood results.
Clearly I don’t know how that happens, is it just possible that it takes sometime for your bone marrow to become overwhelmed by the leukemia prior to it showing in your blood.
Certainly if I didn’t think about my exposure to radiation and had the type of bone pain ( and skin issues I mentioned) then I wouldn’t even be considering I had leukemia, so thinking about that, have I considered this at such an early stage that my blood as yet still looks to be good, as it’s obvious that whilst the leukemia is developing in the bone marrow your body can actually still make good healthy blood cells along side that for some time.
I ask questions of others with experience of bone and skin complaints to try and see if i can exclude my theory or still push for more tests although hard to know what other tests I can ask for.
Yesterday I found out that the scan I had done which was a full spinal scan exposed me to over 20msv, the guy I spoke to said this exceeded the national Maximum for this test by 10%, add that to a previous scan of 5msv, in top of some radiotherapy treatment I had in 2012 of unknown radiation exposure Has led me to where I am.
Whether I am right or not I feel convinced I have leukemia and during the time until it’s bad enough to be diagnosed I fear it is slowly progressing and by the time we find it I will be a lot worse carrying a bigger burden.
You are right I doubt if anyone on the forum can provide answers but they are real patients with some experience of disease progression, hence my request for help.
To add a little more in my thinking, all reports I have seen suggest that the latency period for radiation related leukemia is anything from 2 to 9 years.
Now I am assuming that some studies have been undertaken to article at those numbers, as lets assume That in order for them to arrive at that period that patients would have to be actukasy diagnosed with leukemia.
In my case the scan that I Had took place one year ago this September, well less that 2 years.
So is it possible me that radiation exposure starts the leukemia by it’s damage to dna in one cell ( that’s what us described happens ) and for it to become diagnosed as leukemia takes 2 years, during that time something must be going on it wouldn’t just suddenly become detectable leukemia, so again my thinking is that I do have something going in that is yet undetectable as we know that it takes 2 years to show.
And going back to my thought process if I wasn’t astute enough to think about the radiation then the bone pain I am getting I would be worried about Of course but nit be thinking could it be leukemia.
I have ruled out other bone related issues by having an MRI which didn’t show bone issues.
I hope that helps explian a bit more of my logic however flawed you may think that may be.
Hi, sorry to keep adding to my thoughts but I can’t remember it all at once.
Whilst I have reported bone pain and skin issues I also may not have reported blood spots that came up in my abdomen 6 weeks ago, coincidence?
So following my logic if it’s going to take at least 2 years latency minimum before leukemia can be seen enough to get diagnosed then I have over a year until then.
My whole drive as I am sure most peoples is, that the earlier you get diagnosed the better your chances going forward with treatment.
In my mind I am convinced I have leukemia all my questions revolve around either trying to rule it out (mainly) or in if that’s the case.
It is very clear from what I have read that leukemia is quite often a very hard disease to diagnose and whilst I certainly don’t want it and empathise with those do have it, the sooner I know if I have it the better.
I am sure it will come as no surprise that I am petrified of the position I fund myself in at the moment.
Thanks for reading my Mails, I hope it helps give a better understanding.
I hope you are well? it’s always very encouraging to see that you feel comfortable enough to open up on here. Though as Erica does point out, whilst the forum community can’t answer such questions- as you know, the support line is always here and is a more suitable place to put these questions.
Talking this through with a health professional would always be the best and most appropriate point of call, but of course, Al- please always feel free to give the support line a ring be it to talk further about communicating with a health professional or seeking psychological support. Or any other concern you have- you’re always welcome.