My experience with Kaiser was rough! I am not going to name Kaiser doctors in this post. These doctors could be amazing with other things and I don't feel it's fair to blast them. I went to 3 doctors for 4 years that I was either their first patient or they had seen a couple others with MTC. My surgeon and endocrinologist I was their only patient. My oncologist saw less than 5 people. The last year I was with Kaiser I finally stopped seeing my oncologist and only saw my surgeon. My surgeon was AMAZING!!!! If I asked her for a second opinion, consult with MD Anderson and to look into things for me she always did. She seriously was and is the most amazing person to me. I will probably always have a very special place in my heart for her because I feel she saved my life. She found the cancer, removed it and just gave me exceptional care!
The Kaiser oncologist was great the first year or so I saw him. Then I don't know what happened to him but he became an ass. I watched the show the Resident and after seeing that show I think for him I didn't bring any money, so why keep me around. I also think it bothered him that I knew more about Medullary Thyroid Cancer than he did. I had to learn everything possible because I needed to make sure I was getting the best care. I would ask him questions and he would talk to me like I was stupid. I asked him if certain tests had been run on my tumors. He turned it around treating me like I had no idea what I was talking about, that the blood tests had been run etc. I remember getting very blunt with him. I said NO I asked did you run these tests on my TUMORS not my genetic testing. There is a difference here. This was in November 2016 or so when all this went down. At this point I was starting to realize I needed to leave Kaiser and head to MD Anderson. I also stopped seeing my oncologist and just went to see my surgeon for check ups right around this time.
In September 2018 I went in for my routine CT Scan. My surgeon had requested the scan along with instructions to use contrast. When I arrived for my scan they weren't prepping me for an IV. I asked are you going to put an IV in for the contrast? The nurse said you don't need that for this test. I said someone needs to look in my file because you always need contrast. Did anyone look at my doctors notes? HELLOOOOO I am no nurse or doctor, but I knew more about MTC than I think anyone at Kaiser. I was sooooo frustrated.
When my results came back from the Sept 2018 scan it showed my liver legions had grown. Kaiser wanted me to meet with a surgeon to have the spots removed. I told Art I am not going to let Kaiser do anything else when it comes to MTC because they can't even get the contrast right for the scan. I said what if they do surgery and completely mess things up. I only have 1 liver and I can't keep taking these changes. This is when we decided it was time to move.
I have gone into the detail above because I want people to understand the lack of care I received by not going to a center of excellence for Medullary Thyroid Cancer. Doctors who are not at a center for excellence will tell you oh there aren't doctors that see this rare cancer very often. That is a lie! My doctor at MD Anderson sees over 200 patience with MTC. Currently she is treating 200 patients. She has seen way more than 200 patients over the years.
I called MD Anderson prior to moving to set up an appointment. My mom had scheduled a trip down to help with the boys. When they booked my appointment it was 2 full days of tests plus I met with my doctor, her staff and a consultation with a surgeon. I had MRI, CT Scans, ultrasounds, and blood work. I would leave the hospital each day and I felt completely exhausted. Between the contrast making me sick and all the testing it was rough.
It was sooooo nice to meet with people who understood MTC. I would describe my symptoms and they wouldn't blow me off. They would have me go into more detail or let me know that is very common for MTC. With Kaiser doctors would get this deer in the headlights look when I was start in about symptoms or problems I was having. I had more care in 2.5 days at MDA than I had in 6 years with Kaiser. I didn't have to ask about contrast, how they would be running the lab work, if the labs would be changing. Some of the imaging staff was familiar with MTC even!
I received phone calls from my doctors team explaining the tests, the next steps, checking up on me to see how I was feeling. They don't see a lot of patients that are in their 30's with kids let alone a nursing mother. The nurse practitioner called me numerous times to check on me. Ask how long I pumped and dumped. She said she was taking notes for future patients in my situation, so she could help them based on my experience. It was amazing! They also requested an additional Dotatate scan. It is a newer scan that MDA makes the contrast right at their facilities. It's similar to a PET scan that actually works for MTC patients. PET scans do not work for MTC.
While I didn't receive the news I wanted that I don't have cancer or things aren't growing....a part of me had hoped we made a mistake by moving because I didn't really have cancer. I had 6 years of blood work showing I did, but still I kind of wanted a miracle. Anyhow they found even more cancer than Kaiser had found. My doctor at MDA says the stuff Kaiser was blowing off is MTC. She said this is very common to see it spreading. At this point they are just going to watch it for 6 months. I will go back for more testing. If things grow we will need to discuss additional steps - biopsies, chemo, surgeries etc.
In the past 6 years things have changes for the better with MTC. There is additional genetic testing they do now. Kaiser had no knowledge of this. Thankfully everything came back as sporadic, so it is not genetic. If it was genetic my kids would have to be tested and whatever side of the family it was on would also need to be tested. There would be talk about removing thyroids of the family members that had any signs of a raised calcitonin or CEA. Thankfully this isn't an issue! I was hesitant to have kids if it had been genetic when we found out I had cancer. I just didn't want to spread it to them. I may have taken the chance, but it was something that weighed heavily on my mind while I waited a month for those results to come back.
I can't recommend MD Anderson enough!!! Is it expensive to go there? Sure it is! I met my deductible and yearly out of pocket within 1 day of testing. I will budget for this in the coming years. I will know I need to set up the max amount of flex spending money available plus some additional money to help cover my medical costs. We pay a TON of money for insurance each year plus co-pays, deductibles and out of pocket.
So many people complain about Obama care. There have been some great things with Obama care. The lifetime maximums went away and pre-existing conditions. I would possibly be without insurance at this point in my life because of my pre-existing conditions and I would have for sure met the one million dollar lifetime max. I don't agree with everything they have done with it, but these 2 things alone have been great for people who have major medical issues.
MD Anderson is an amazing place! If you have cancer my suggestion would be to go to MD Anderson. They know their stuff! I am sure there are other places that might know stuff too, but when it comes to your life go to the best!
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