Frustration Regarding Rare Cancers

I thought I'd post this before adding the rest of my posts from my Facebook page. So far I still haven't been able to find a doctor that is willing to take me on as a patient. Thank God for having a family friend who is highly intelligent and well connected in the medical field. He is doing his best to find one as soon as possible for me. 

In the meantime, I've been doing my own research.  Can you believe in this day and age, there are approximately only 5, yes you read that right, just 5 states that have doctors that are knowledgeable about this type of rare cancer. Thank goodness for me, one of the states is IL, which is only two hours from us. But my point on this, is that many people do not have the money or means to travel and/or stay someplace that far away if they are diagnosed with this rare cancer or any other rare cancer or any cancer for that matter. Now please don't take my next comments wrong - all cancer's deserve research.  But look at the outpouring of financial aid, support, and especially information, etc for Breast Cancer, Colon Cancer, Brain Cancer, Non-Hodgkin Lymphoma and so many others that are heard about everyday in the mainstream media.  But there are MANY cancers that are so RARE that no one has even heard of them, that doctors don't even know enough to treat those patients. Don't they deserve the same support??? Don't the people that are diagnosed with the rare cancers deserve a chance at life also? We need to bring these rare cancers to the front of the media so they can also get financial aid, money for research etc. 

You have no idea how petrifying it is to know you have this thing in you someplace, growing (albeit slowly?), your life is not the same and never will be. And yet you cannot find a doctor for help. If there is even one. Most days it seems surreal. But I think in my case it feels like that because I have been sick for so long with no answers. On the days I think about what my body is going thru, I wonder if death would actual be better than the life I am now living. Because in actuality I am not living but existing. I might feel good one day a week and even that is such a strain and I am on constant pain killers to get thru the day. The pain is constant and some days worse than others.I'm not able to do many things anymore and I've pretty much lost all the friends I had because they got tired of my not being to do things or canceling at the last minute. 

I pray I find a doctor before it's too late and I also pray that more attention and research is brought to the forefront for rare cancers like Carcinoid Syndrome and other cancers that people have never heard about.  So if you can, please help spread the word! You never know when someone you love may be the one diagnosed.

If You Don't Suspect, You Can't Detect It!
Joyce