I'm sure some of you are awaiting to hear about my visit with Prof X, well first of all let me say that it was a tiring and difficult day not only because of my post Chemo symptoms but mostly due to the fact that my Dad was facilitating the appointment.
My father and I don't quite communicate on the same wavelength and we rarely spend time together so this was an extraordinary day to say the least. Don't get me wrong, I think that my Dad is a great man who has achieved a lot in his lifetime but there is no hiding that he has never really been a family man as such.
So we were originally seeing this guy to see whether I would be elligible for inclusion into a trial, Prof X looked at all the info and scans and then went on saying that the trial thing was the easy part.
Then he proceeded on saying " I don't want to give you false hope but I think that for me what is important is to make sure you have been given the correct diagnosis."
As I stared at him with a stunned mullet look on my face he went on saying that my scans did not present like a Sarcoma, he said normally Sarcomas do not jump from the muscle to the liver, rather from a muscle to the lungs, it is also rather unusual for a sarcoma to go to a lymph node. On the other hand he added that it appeared to behave very much more like a germ cell cancer.
Basically if it's a germ cell cancer then my prognosis is very favorable as long as I'm receiving the correct treatment, however this was just a theory and he was very clear that he didn't want to give me false hope.
I've had more blood tests done and at the moment I'm awaiting to hear back from his office regarding a final diagnosis. It's like one step forward, two steps backward.
Apart from that I'm finding it difficult to sleep, I probably average about 3 hours a night, I feel hyper up until the afternoon, cannot stop eating, Vee says it's probably due to the Steroid tablet I take in the morning.
I keep on checking out my hair everyday to see if any has fallen and almost feel disappointed when I realise that I'm going to need yet another shave...
I think the whole lack of conclusive diagnosis by the medical profession has again raised its ugly head, its now been more than two months since we know that I have "something" but this is getting frustrating.
There are three possible outcome to that, it's LMS, it's germ cell or it's something new that no one has ever been diagnosed with before....
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- Alex
- Diagnosed with Leiomyosarcoma, a rare soft tissue cancer on Friday the 28th of March 2008, this blog is about my ups and downs, some random thoughts and dealing with the many challenges ahead.
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4 comments:
Yes, I was waiting to hear how it went.
Holy hell. More question marks? Well, if it comes with a better prognosis, I'm for it.
I think Vee is very right about the steroid tablet.
I hope you make some progress on the diagnosis soon, and in the meantime I'm sending you the mental version of a chamomile tea so you can get some rest.
Bea
Vee is right about the steroid tablet. They do make you hyper. It helps counteract the fatigue, but in the beginning it is too much hyperness. The steroids are also what makes your blood glucose go wild.
I know of quite a few people with LMS AND liver mets. Lungs might be more common, but if the liver is closer to the primary tumor site, then it is just as likely that mets will show up there.
He is right that LMS is not known to move through the lymph system. It travels quite nicely through the blood vessels, but it can sometimes also be found in lymph nodes too.
I will have to check out this germ cell cancer thing. It is completely new to me.
Take care Alex. Cyber hugs to you.
Carole,
It will be interesting to find out where this difference of opinion between oncologists will lead.
Yes, it will be very interesting. If you have a way of finding out how much actual hands-on experience each has with sarcoma, it might help you with some useful predictions.
I did some reading on germ cell cancer and I can see where that might tie in to some of your initial diagnostics. There are a few people on the LMS list who have gone around in circles of misdiagnosis. It is just a really hard cancer to diagnose, but a sarcoma-experienced pathologist should be able to identify it pretty conclusively. I am not sure how it works there, but I know that here a lot of people have slides and even entire wax blocks sent to pathologists who specialize in sarcoma for second opinions. Few docs ever see sarcomas, and that can include a lot of cancer specialists too. So, it could be helpful to have your cells looked at by extra eyes that have that additional level of experience. Or at least keep that option in your back pocket just in case they have one too many disagreements about it. You have enough to deal with without having to be subjected to inconclusive diagnosis. Well, I guess you have already had enough of that experience with the events of the last two months, haven’t you?
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