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 

Finding Out What is Wrong with Me...A Diagnosis FINALLY!

This blog is about my journey after being sick for almost 10 years and finally finding out what is wrong with me. It's my personal journey with Carcinoid Syndrome.  At times I may seem "eh" and other times I will be bleeding my heart out. If you would like to follow me on this journey - and I have no idea how or when it will end - I welcome you aboard! Oh. and I should mention they will probably be profanity at times because this has already been a rough road.

I was diagnosed with Carinoid Syndrome on July 1, 2015.  It is a very RARE form of Cancer and by the time you are actually diagnosed, you have more than likely had this cancer in your body for anywhere from 6-10 years.  Which means with Carcioid Syndrome, you already have a tumor someplace in your body, and naturally if you have a tumor, your have cancer. The hardest part is finding a doctor that specializes in this rare form of cancer. To say I was in shock would be an understatement! It also didn't help that I received the call from the doctor's office while I was on the road driving to get a photo of the rare white pelicans that had been in our area. I could barely see the road from crying after that call and I'm amazed I got to where I was going. I have known for a long time that something was not right but none of the doctors I've seen (and I've seen them all!) could ever diagnose it or and many wouldn't even try.Thankfully my Neurologist had a patient years ago with the same symptoms and he referred me to a Rheumatologist that knew enough to run the correct combination of tests. He ran them on a Thursday and I got my results on the following Monday. I was immediately referred to a specialist in a different city. More on that in my next post. In the meantime, to learn more about this cancer, please visit:http://www.carcinoid.org/content/ and spread the word. If You Don't Suspect, You Can't Detect It! Joyce ...