October 15 - I got a call from MD Anderson telling me I have an appointment on November 3rd at 9am. To be honest, I was quite shocked because the last I heard my endo (Dr L) was just talking to them and trying to refer me. I never got to say whether or not I even wanted to go to MD Anderson.
So anyway- the lady on the phone informs me that I have an appointment, tells me when to be there, where to go, and then goes "How will you be traveling?". I told her I had no clue because this was the first I had heard of this. Then she asked me the same question again. I was NOT happy with these people at this point and was getting quite perturbed. So I asked her if there was a patient rep I could talk to about setting up a place for my family to stay and so on. She tells me "We do have hotels in Houston.". Well DUHHHH you think??
She then proceeds to inform me that if my insurance won't cover it then I need to bring $2500 with me for the appointment. So I informed her back that if my insurance didn't cover it I would NOT be there... period! She again informed me that getting an appointment this quickly was a privilege. I told her I don't care what kind of a privilege it is suppose to be, I don't have $2500 laying around for no reason other than as a deposit on a bunch of tests I've already had done before. She then tells me that the money is just for the doctor consultation not any tests. OH MY GOODNESS!!! So I took down all the info and left it at that.
Called my doctor to find out if she had received my email with the links to endocrinologists who had dealt with this before and what her opinion was on me going to the Mayo Clinic. She said the Mayo Clinic in Jacksonville really doesn't deal with things like this because I am VERY rare. She gave me the results of some more of my tests and it seems more has been added to my diagnosis.
I have MEN2A (the RET gene test hasn't come back yet but there is no doubt it will come back positive at this point) complicated by medullary thyroid cancer, pheochromocytomas, and hyperparathyroidism.
I had to ask her just how bad the spots they found were and where exactly they are. The Dr told me that I have one most likely two tumors in my liver that are 1.0-1.5cm, one on my left adrenal gland that is 1.5cm, one by my right adrenal gland that is the same size, and a 3.0cm tumor in my small bowel. She then told me that she had felt some in my lymph nodes in my neck so she already knew they were there plus they are in my parathyroid as well. In other words, I have cancer in my thyroid, my parathyroid, my lymph nodes in my neck, tumors in my liver, on each adrenal gland, and one in my small bowel. I asked her if I had any in my heart or lungs, asked to make sure I didn't have them in my stomach, and then took a deep breath.
I told her that this was good news. I don't think she got it at first. We talked about alternatives to MD Anderson and specialists a little closer. She kept telling me that she feels I should go to MD and so on. I feel that we need to look at ALL our choices and I need to think about my family as well.
October 18th - Monday- I did a bunch of research online over the weekend and on Monday on my own. A place called NIH (National Institute of Health) in Bethesda, Maryland was mentioned several times as well as a Dr Pacak who does a lot of studies on pheos and is considered one of the TOP pheo experts in the country. Found everything I could about my condition, talked to my friend Christine on Sunday night who’s mother has a lot of the same things I have, a lady from the Pheo Support board named Carol called me later in the evening, and earlier MD Anderson called me to let me know that unless I had the $2500 in hand they could not take me. Honestly? I already knew that and it just made me mad to think that they are that stuck on themselves. If any of my children ever wants to be a doctor I hope they have a heart too. After that I called and made an appointment with my endo doctor so we could go over my results.
October 19th - Went to my appointment with the endo (Dr L) and gave her all the contacts I had found for Dr. Pacak, his assistant, another doctor at NIH, all their email addresses, a specialist at H. Lee Moffitt named Dr. Larry Kvols (who my friend Christine’s mother uses), a link to a study that is being done on pheos, any questions I have, and so on. She was very impressed!
She said she couldn’t believe she didn’t think of NIH first because she is from Maryland and knows Dr. Pacak personally. We talked for awhile and I told her what I wanted for my care. I also asked her if this is considered terminal cancer and to please be honest. She told me no that it isn’t at this point but that another form of thyroid cancer is and so I told her I’m happy I don’t have that then. I asked her to explain some of my tests to me, what the things they tested for do, what made her think I have a pheo (test results from two tests, my symptoms I’ve had, and the spots on the CT scan on my adrenal glands), and asked her about getting the kids tested.
At this time she has sent an email and left a message with Dr Pacak’s assistant Karen Adams. We are going to try to get me in at NIH as well as get the kids’ testing done there for the MEN2a gene because they are at the forefront on technology, they love cases like mine because I am considered highly rare-out of 25,000 people each year less than 1,000 get medullary thyroid carcinoma- but it gets even more rare because MEN2a is rare. If you have MEN2a, which is a gene mutation, then you have high chances of having the medullary cancer, the pheochromocytomas, adrenal tumors, and hyperparathyroidism plus a few other things. Around 25 percent of MEN2a patients develop all three (MTC, pheos, AND parathyroid tumors). Of course, I have ALL of them. Hey again, why do it halfbutted when you can just do it right eh?
Anyway- the right people at NIH have been contacted thanks to those wonderful people on the pheo board, we have a plan in place, we have a backup doctor in mind, I have information on free flights through Angel Flights and Mercy Medical Flights, AND we are staying open to the octreotide therapy clinical trials for use as well (it’s a drug they are researching that stops the growth of tumors. Doesn’t get rid of them but it does stop them).
Everything on me to this point is operable. Depending on where the tumors in the liver are, the liver can be shaved and it grows back. My adrenal glands are going to be removed the endo says and I will have to take a steroid supplement for the rest of my life. The one in my small bowel I’m sure can be removed as well and hey, they can even keep some since a person has over 15 feet of it.
We’re not sure where exactly the pheos are at this point but if/when we find them they will be the first things to go. THEY are the dangerous thing because they are what can cause me to have a heart attack while in surgery. So we go after them first. My total thyroid will be removed and I will have to be on thyroid hormone replacement pills for the rest of my life. My parathyroid glands will be removed and I honestly don’t know if they will even try to save any. I will have to be on calcium supplements for the rest of my life though if they do take them all. The lymph nodes in my neck will be removed and hopefully those are the only ones this has spread to. There are none at present in my heart, lungs, or brain. So they have a chance of removing everything.
The bad news is that because of this genetic mutation the MTC and pheos can always pop up again somewhere else later. If they do they will decide whether or not to operate or just treat them. If they move to your heart or lungs though they can’t remove them and may just try different therapies to slow or stall their growth. There is also the chance that I will get lucky and none of this will ever come back again. I’m expecting them to come back though and if they never do then I will have the joy of that gift. If any or all of the kids have this gene mutation and have MEN2a then they will need thyroidectomies as well and have to be on hormones for the rest of their lives. I’m just hoping that if any of them have the gene it hasn’t started as a cancer yet.