In 2010, I was diagnosed with stage three Papillary with Follicular variant thyroid cancer. I had a total thyroidectomy, with eleven lymph nodes and two cancerous parathyroid glands removed. A couple of months after my surgery, I had a quite large dose of the I-131 so that this would hopefully kill any remaining cancerous "rogue" thyroid cancer cells. I am happy to say that I am still in remission, thanks in great part to a wonderful endocrinologist. Here are some things that I have learned over the past twelve years. Everyone's experience is different, but I hope that by sharing what I have learned, I might help someone else on their journey.
1) No, this is not the " good cancer"!! Yes, it is usually very treatable, and survival rates are good- especially for the differentiated thyroid cancers ( DTC), which include Papillary and Follicular. The reason this is not the " good cancer" is, well, it is cancer! No cancers can be described as good. With thyroid cancer there is constant monitoring and testing , constant dosage changes, various symptoms that can happen to a person without a thyroid ( remember- the thyroid gland controls EVERYTHING) and the worry of recurrence. One might say that thyroid cancer has a lot of baggage. Anyone, at any age can have thyroid cancer. It does not discriminate, and most of the time it is difficult, if not impossible, to pinpoint the cause(s) of thyroid cancer. I have an idea of how I might have been predisposed to thyroid cancer, but for the most part, I try not to dwell on this. My main focus is trying to take care of myself and keeping up with my tests,etc. which leads to #2...
2) Keeping a copy of all blood work, tests, surgeries, treatments, etc,. has been invaluable to me. I have a notebook set aside for my records. Remember, these are YOUR records. In the past, I asked my doctors' offices for copies. Now, with patient portals, I can view and print my test results. This makes it easier for everyone, I think. As an example, a few years ago my endocrinologist was changing computer systems. There was an important test that my doctor wanted to look at, but it was missing from my chart. I had a copy of the test ( sometimes I carried my notebook with me and this was one of those times) and was able to pass it along to my doctor.
3) If one feels like something is wrong, it probably is. Five years before my thyroid cancer diagnosis, I was seeing a different endocrinologist. I told him that I was extremely tired and had no energy. He told me that it was "stress" and he did not order any additional tests to check things out. I did not feel good about this and sought a second opinion. I was lucky enough to find my endocrinologist who was my doctor for 20 plus years. When I told her how I was feeling, she ordered blood work and then did a biopsy- the rest is history, of course. In other words, do not hesitate to speak up for yourself and/or seek another opinion if you feel that something is "off".
4) There is a link between thyroid cancer and breast cancer. I was diagnosed with invasive lobular breast cancer in 2015. I am currently in remission, and hopefully will stay there. I am not relating this to scare anyone, I would just like to remind everyone who has had thyroid cancer to be sure to get a mammogram as scheduled. Of course, it works both ways. If one has had breast cancer first, one should get a neck check and report any unusual symptoms to the doctor. Early detection for both cancers is the key.
5) I would say that anyone who has had cancer has a somewhat compromised immune system. It is important to get all recommended vaccines, as we are probably more susceptible to getting sick. I can not say enough about how important getting enough sleep and eating good food is. Our bodies repair themselves at night, and we also need good food to nourish ourselves. Sounds simple, but sometimes hard to accomplish.
6) I have found " my people" online, in cancer support groups. No one knows how it feels to have had cancer like another cancer patient. Talking to others, albeit online or in person, helps relieve stress and improve our mental health . Our families and friends can be a great source of support and love, too. I do not think being stoic and not asking for help is productive. Do not be afraid to reach out to others. Your experiences may just help others as well.
7) The most important thing that I have learned from thyroid ( and breast) cancer is to be YOUR OWN BEST PATIENT ADVOCATE! I have said this many times, but do not be afraid to ask questions, voice any concerns, and get a second ( or third or fourth) opinion if necessary. It is hard sometimes- this spoken by a person who had to try FOUR times, after my previous endocrinologist retired, to get an endocrinologist who was a good fit for me. What was important for me ( and I made a list of pros and cons) was that the doctor was open to hearing how I was feeling and would take my concerns seriously. While I realize the importance of blood work values, I am not just a set of numbers! I need to be able to discuss results and treatment plans with my doctor. I did not want a doctor to "dumb it down" or make decisions without my input. I have been dealing with thyroid cancer for twelve years, and I know a few things about having it! Having finally found a doctor who is a good fit for me, I can feel confident in his treatment plan for me.
I am sure that I left something out in my list of the important things that I have learned about having thyroid cancer. But for those people reading my blog, just remember that #7 is the most important advice that I could give anyone. Best wishes and good health to all thyroid and breast cancer patients out there. You are not alone- we are in this together. May we all be able to help others, and may we all have continued good health.
No comments:
Post a Comment