This is my story about finding out I had thyroid cancer.
It started back in January, I had a little cough. It seemed to be worse at night when I was laying down in bed for some reason. This went on for about a week, I was thinking I just had a little cold or maybe some allergies to something. After all, I live in the tropics and we had foreign company that week. Then it felt like I had something stuck in my throat, just a little tickle in the back and it wouldn’t go away. This went on for a few days when it dawned on me that I should probably see a doctor because my thyroid is right there.
As you all can tell I live in Costa Rica and our healthcare system is a one payer system. It can be very slow at times. But you can purchase private health insurance and you can visit a private doctor and/or clinic if you like. We do not have private health insurance, but I did go private for a lot of my tests; so I use the two systems together. Using the public one payer system there is no out of pocket expenses.
So, I go to my primary care physician and she feels around on my neck and tells me that she wants me to get an ultrasound done of my thyroid. She does suggest that I go and have it done privately so it will be done quickly. No problem. I go to a clinic and have it done for around $70. I get the results right then and there, I get the images, and take everything back to my doctor. It does show a small nodule in my thyroid. She says she wants it biopsied. Again, I go private for this and it’s around $250. I get the test results back in a few weeks with a suggestion of getting my thyroid removed because of the type of cells that were found; Hurthle cells. This is when I really start doing some research on the subject.
It seems that Hurthle cells are rare and even rarer if they are cancerous, it seems that I am rare. So, I decide to go to a private endocrinologist here in Costa Rica. Cost for an office visit was $100 without insurance. He orders some tests, another ultrasound, and can’t figure out for the life of him why they would want to remove the nodules when they are so small. I’m already put off at this point with him after hearing him say that. But I get the tests done and send him the results. Blood work was actually fine and the new ultrasound showed another small nodule on the right lobe of my thyroid. Private endo still wants to wait. In the meantime I am waiting on getting in with the public system so I don’t have to pay anymore.
I made a trip to the States to visit my family, this was back in June. Had a great time, my cousin and I took our kids on a road trip for their high school graduation. Got to see my sister, which is always important to me. Got back and got my appointment with the public system finally.
By this time it is the end July when I finally get to meet with an endocrinologist. She was very nice and spoke pretty good English. She reviewed everything and set me up with what they call a thyroid clinic at the hospital. That appointment was August 11th. During this appointment I met with an oncologist, endocrinologist, pathologist, a surgeon, and about 12 interns as it is a teaching hospital. I liked the idea of meeting with everyone at once. This kept everyone on the same page at the same time and I didn’t have to go to multiple doctors appointments and it saved a lot of time. The decision was made that yes I would have surgery. We just didn’t know when. So, my husband and I ran all over the hospital getting all the paperwork ready and I got on the waiting list for surgery. I also got another appointment for another ultrasound, this appointment was in October.
In the meantime, I’m trying not to freak out too much. This is a lot to take in, still didn’t know if it was cancer or not at this point either. A good friend of mine talked me into going up to Florida to see if I could get the surgery done there any quicker. I went to an endocrinologist in Florida who told me not to worry about anything because the nodules were small and it was probably just papillary thyroid cancer and those nodules are very slow growing. This doctor had all of my tests results and was bilingual, so he could read Spanish, and no where did it say papillary only Hurthle! I was so angry. His suggestion was to come back in six months and he would do a genetic test on it to be sure. This doctor reminded me of all the stories that I have read on the support pages about how doctors don’t listen to their patients at all, I was in tears when I left there. So, I came back home.
Somewhere along the line I actually lost the order for my next ultrasound. I have no idea how I had done this. But, I had taken a picture of it on my phone! So, I went private. Again, I paid the $70 for the ultrasound and the doctor was very nice. She explained everything to me that she was looking at…well, almost everything. My husband was right there with me the entire time like he was for every other test. I get the results and head back to my primary care doctor to see if she can get them to the hospital for me.
It turns out that she can’t get them to the hospital for me and that I have to take them myself. This is a two hour drive each way. But, the results now show that I do have cancer. So much for those doctors telling me not to worry about anything. My husband and I decide to take the results down on a Friday and drop them off. I get to my endocrinologists office and wait for the door to open so I can hand him the results. He looks at them and then looks at me and asks, “You still haven’t had surgery yet?” Nope, I’m still waiting for them to call with an opening. He told me to come with him that he was admitting me right then and there! He said this was not waiting and couldn’t wait and yes it is cancer. I was starting to freak out at this point. I like to be prepared for things and I was not prepared for this at all.
I went in on Friday afternoon to the hospital and had my surgery on Tuesday. All of the nurses and doctors were very nice and treated me very well. The food was terrible though! If I ever eat rice and beans again it will be too soon. My surgeon told me that the surgery went beautifully and I actually got to come home the following day on Wednesday. I was super happy to be home. After all, I was only home for a few days from Florida before I went into the hospital. My poor cats and dogs were freaking out when I got home again.
It’s been a week since I had my surgery and I got my stitches out of my neck today. I told my husband I could be Frankenstein’s monster for Halloween now. I did get a secondary infection after I got home, which seems common for me to do; I have had many surgeries in my life. I am now taking my medication everyday and I will have to continue to take it everyday for the rest of my life if I want to live, which I do. I will go back for some blood tests pretty soon to monitor my hormone levels and to see if anything needs to be changed. I will have to continue getting ultrasounds every so often also to check for any regrowth of any tumors. This battle may be over, but the war still rages on. It’s an ongoing war with this, many people are never right after the surgery and so many more people don’t understand what they are going through. The thyroid is a very important little organ and it controls so much in your body, once it’s gone it can be very difficult to get balanced again. They call thyroid cancer the “good cancer”, but there is nothing good about it. You still have to try to live, take medicine everyday for the rest of your life, hope you can get it balanced. Many doctors won’t listen to their patients about it either, I’m glad that mine is listening. I told her today how much I appreciate her.
So please, if you know someone who is going through, or who has gone through a thyroidectomy for cancer…be patient and understanding with them. Listen to them because many feel like no one is listening. Many get left behind by friends and family because they just don’t have the energy anymore to do the things that they once loved doing. We feel tired, all the time, no matter what we do or don’t do. I’m just starting my journey and I have a long way to go with it. But I am learning, and I have found support with my thyca sisters and my husband. I hope to paint again soon because that is what I love to do.
Until Mañana, pura vida!