|
New and trying to understand!
Hi Kevin and. Hopeful
Thank you so much for your replies.
It's so nice to speak with people who have even heard of these illnesses!! Most people I talk to haven't a clue! It's so hard to explain to people why I haven't been able to have chemo for my breast cancer.
I haven't heard of Judith. Marsh but I have since googled her and she seems right up there in the world of AA!
She's at Kings in London. I have just recently asked to be referred to the Royal Marsden hospital in London with regard to a second opinion with my Breast Cancer. We have gone private as the NHS were taking an age. Albeit I've had a lot of tests within the NHS system which must have cost thousands.... Some of the results appear abit wolly. I became frustrated and opted for a private opinion at the Marsden. I'm worried now in case I also need a private opinion within the haematology aspect as I have 2 things going on!
I guess I can ask to be referred to Pro Judith at kings within the NHS system and let the appointment take it's time (prob 8-12 weeks)
I'm not very good at waiting! Till now I had a prolapsed disc 6 years ago. I had a MRI and surgery within a week! Then it was business as usual. These diseases tend to be very much diagnoses of exclusion (am I right?), waiting and waiting for results.
I have only just, a few days ago gained access to some of my blood and various other test results. (Not all of them) I will, if you don't mind, post some of the results and see what you think. You seem both very educated in these fields and my head is exploding with, is it AA, MDS, PNH, lymphoma, SLE.... To name but a few.
I haven't been offered any treatment. Just to avoid NSAIDs. (A nuisance as I have a lot of back pain)
Another thing, I'm not sure if I'm mad but could there be any relationship with the bc and the bone marrow problem. I'm not sure which came first. Can bc cause bone marrow hypocellularity? My bone marrow last month was shown to be hyper cellular (70%). The first 2 tests were from the pelvis (December 2013 and august 2014 showing 10-15% cellularity) and the most recent test from my spine (L3). Could it be that now the breast cancer has been removed by surgery, the bone marrow has recovered. Would it be better to have another sample from the pelvis for comparison. In this case, I'm cured!!!
Or could the bone marrow problem have caused my immune system to not recognise and kill the breast cancer cells, allowing them to multiply and cause a solid tumour which in time was discovered?. In this case, without chemotherapy I could have another tumour in time? Just a fleeting thought!!
Thank you for listening!! I guess it's still early days. But I don't want to waste my life thinking, what ifs. I don't want endless hospital trips watching, waiting for a bomb to go off.....soon?, maybe never. Is it best to be ignorantly blissful and deal with the symptoms as and when and if they ever manifest themselves. Knowing that you're just enjoying and carrying on with life until you physically can't and then do something about it? I don't know.
What I do know is, that this forum is ace!!! It has a long long history of posts regarding every aspect of bone marrow diseases. It's like a whole massive sports field of haematologists (I swear you guys make more sense than the one I've spoke to!) and people with a wealth of personally experience. I just need about a year to read it all!!!!
Hope everyone is well and enjoying life. It's a sunny Autumnal day here in Norfolk, UK.
Have a great weekend.
karenxxxxx
|