Since I’ve shared much on the blog about both mine and Kramer’s cancer journeys, and about life as a widow, I get questions and notes from blog readers all of the time asking questions or leaving comments. Just this last week, I had three related to my being open about my thyroid cancer. I get some asking about Kramer’s lung cancer and I get notes from recent widows. I appreciate getting the notes. Each note is a confirmation that I did the right thing about being open and sharing.
Sharing isn’t always easy but I am so glad that even though at times, it’s hard, so much benefit still comes from it. Whenever we can connect with someone who might feel the way we do…have experienced the things we did…have had the same fears and uncertainties, we feel supported. We can look and say, “She is working her way through widowhood, maybe I can too.” We can say, “I need someone else who knows what I might be feeling to hear my words and understand.”
I am so touched by the letters, notes, and comments I get asking questions or sharing fears. I wish I could wipe all the fear and anxiety from you that goes with hard life things but I can’t…so instead, I try to be a sounding board. I try to be the ear many of you need who can relate to your experience more than your close friend can because she too is dealing with how your circumstances might affect her and doesn’t have the life experience to be that sounding board.
I know that there are MANY more of you dealing with some of the same things I’ve dealt with but you aren’t the type of person that writes or leaves me a note, but still would like the information. So today, I’m writing a little more about thyroid cancer for those who have asked questions and for those who want to ask…and for those who might have a friend or family member experience it.
The medical quoted info in this is coming from Mayo Clinics site.
“The increased incidence of thyroid cancer is worldwide. The incidence of thyroid cancer has increased dramatically during the past three decades and it is now the fastest-growing cancer in women. Almost all of this increase is in papillary thyroid cancer.
For unclear reasons thyroid cancers (like almost all diseases of the thyroid) occur about 3 times more often in women than in men. Thyroid cancer can occur at any age, but the risk peaks earlier for women (who are most often in their 40s or 50s when diagnosed) than for men (who are usually in their 60s or 70s).”
I think the first thing I need to tell you is that there are two main types of thyroid cancer. There are others as well but they are rarer and sadly more aggressive.
Papillary thyroid cancer. The most common form of thyroid cancer, papillary thyroid cancer arises from follicular cells, which produce and store thyroid hormones. Papillary thyroid cancer can occur at any age, but most often it affects people ages 30 to 50. Doctors sometimes refer to papillary thyroid cancer and follicular thyroid cancer together as differentiated thyroid cancer.
Papillary is the most common. 80% of people who get thyroid cancer have this form. This is often hereditary.
Follicular thyroid cancer. Follicular thyroid cancer also arises from the follicular cells of the thyroid. It usually affects people older than age 50. Hurthle cell cancer is a rare and potentially more aggressive type of follicular thyroid cancer.
Follicular is the next most common. 15% of people who get thyroid cancer have this form. This is not hereditary. It is more aggressive and can spread to the lungs and bones.
I have follicular, the second most popular kind, so sometimes, my experience is different than what someone else might have experienced especially if they have papillary.
My cancer was found after… a routine annual exam. I’m sure you all have experienced the doctor feeling on your neck and telling you to swallow. Who knew? When they do that, they are feeling your thyroid area. Mine felt enlarged during that exam and I was sent to have a neck ultrasound. The ultrasound showed I indeed did have nodules, or lumps, on my thyroid.
People can have these lumps and they are nothing or benign. That means not dangerous at all. Others have cancer. I was told the only way to know was to have have an asperated needle biopsy. What happens then is a procedure room is assigned. A radiologist numbs the neck. Ultrasound is used to guide a needle into the suspicious nodule and a sample of that is gotten. That is tested and then results are giving.
For me, I had two nodules…one on each side. One was benign. The other was “undetermined”. That undetermined one was 4 cm large. That is considered large and can start impairing swallowing or change your voice or be uncomfortable. The undetermined result also left me in a position that it could be cancer…it might not be. I would have to continually come for needle biopsies until that nodule came back with an actual result.
I didn’t want to do that plus I’d started to have trouble with my ear. I was often feeling like I was going to get an ear infection. I asked my doctor about that and she said the nodule being it was so big could be putting pressure on things in there and that was contributing to my ear issue.
So, being a proactive person, Kramer and I decided that we thought it was best to remove my thyroid. Again I was given choices. I could just remove the “undetermined” side or all of it. We were told that if the undetermined side did come back and was cancerous, they would likely go back in and get the rest of my thyroid. We thought we’d do one surgery and be done with it.
This is super “easy” surgery. I had the surgery on a Thursday and was back to work on a Tuesday, no problem. My throat was sore and swallowing was uncomfortable at first but other than that, easy peasy.
Some people worry about the scar it leaves. Doctors nowadays are careful. They cut in the fold of the skin. I don’t think my scar is super noticeable.
Being my whole thyroid was removed means I am on medicine for the rest of my life to replace the work that my thyroid did. If you are like me, you have NO IDEA all the good things a thyroid does. Let me just say, if I miss a pill I know it…and no longer miss a pill ever!
I am going to say a few things in relation to questions that have been asked of me…
I think the only way to know for certain that you do not have cancer is through a needle biopsy. I don’t believe someone can look at an ultrasound and tell you if it’s cancerous. I would request a needle biopsy anytime a nodule on your thyroid is large enough to biopsy. As a patient, you can request tests. You can listen to the doctor’s reasoning for or against it.
My surgeon came out after my surgery and talked to Kramer. He said the nodule did not look suspicious and he expected everything to be fine. When I went back for my follow up, you can imagine my shock to learn I had cancer.
After the surgery, I went on a low-iodine diet and was given radioactive iodine or RAI therapy. I was given a long list of dos and don’ts. It mainly boils down to I couldn’t be around people for two weeks. This is the treatment for thyroid cancer…not chemo, not radiation.
Other tests that are commonly done include a full-body scan. This scan is done to check if the thyroid cancer has moved to other places or metastasized. This determines the amount of radioactive iodine a patient would receive. Doses are calculated according to how “bad” the cancer is. It’s given in millicuries units. A person can 600 total in a life span. I was given 150 at my first treatment. I didn’t feel any different after taking it.
This scan is different than a PET scan…they might seem the same but are different. Let me explain the little that I know.
Thyroid cancer takes up radioactive iodine. They actually use radioactive iodine to kill it. So for a full-body scan, it is necessary to starve your body from iodine. That is why I have had to go on that diet. For about two weeks the patient eats food as low in iodine as possible. It’s a miserable diet but for two weeks, it’s doable. Then the patient gets shots to suppress their thyroid. There are typically two shots twenty-four hours apart. Then next day the patient swallows a small tiny dose of radioactive iodine.
From there a day or two later, the patient has the full-body scan. The radiologist looks for places the “light up”. This indicates that the thyroid cancer has spread to other places in the body.
I’ve had the full-body scan 4 times. It’s not a big deal…just annoying to be on the diet. The machine that does the scan comes really close and if you’re claustrophobic, it might be a challenge. You can request meds to relax you if needed.
Blood work is also regularly done. Doctors look at a thyroglobulin tumor marker. This number needs to be below 2 for a patient to have no concerns. Over 2 indicates possible thyroid cancer or a return of cancer. This is the number that keeps haunting me. Mine is well over 100 at this point. That’s one of the reasons why we know mine has returned.
I’ve also had PET scans. The reason they do PET scans is that at times, the thyroid cancer becomes resistant to radioactive iodine. In this case, radioactive iodine can no longer be used to treat the cancer. The cancer might show up on a PET scan. This test although done in a big tube, cave-like machine, does not involve a diet. For this test, you are given an IV, asked to relax for a half-hour so the meds can move around in your body, then the scan is done. This common but not done as often as full-body scans.
Neck ultrasounds are also commonly done. It is the first chance to “see” what is going on without being invasive. They are easy.
Chest CT scans are also common. For me, follicular cancer can spread to the lungs and bones. I will get a CT scan every time to check for lung development and periodic PET scans to check for bone cancer.
Most people have papillary cancer. It’s important to remember the 5-year survival rate for regional papillary thyroid cancer is 99%. For regional follicular cancer, the rate is 96%. These are good numbers that I feel many should be able to take comfort in.
Another thing to feel comfort in, this cancer does not require chemo or radiation. It is not taxing to go through treatment. I was told when diagnosed that if you had to get cancer, it’s a “good cancer”. That’s laughable but somewhat true. I was also told that it’s a cancer that nickels and dimes you to death. That is somewhat true too especially in my case where it has spread.
I was told that thyroid cancer is being found so often nowadays and mostly completely by accident. People come in for a shoulder issue, have a CT done and the thyroid happens to show up on the scan and it’s found.
I started my thyroid cancer journey on December 23rd, 2015. I had an ultrasound the next week. I had surgery at the end of February. I was told I had cancer at my follow-up at the beginning of March 2016. I had radioactive iodine treatment at the end of April 2016.
By the Fall of 2018, my thyroglobulin tumor marker (from my blood test) started to indicate my cancer had returned.
I continually got to the doctor and we are monitoring me. It is thought that it has moved to my lungs. At this time, it is slow-growing…and my doctor has told me to forget about it and live my life. She told me that I could live many years like this and that’s what I’m doing. I don’t feel sick at all. I don’t have any problems. If you saw me walking down the street there is no way you could tell I had any problems. I’m so thankful for that. Pity is hard to deal with.
Please remember I am the exception. Most people do not have a reoccurrence. If you are diagnosed or your loved one, please live in the hope that reoccurrence isn’t common.
If you are one who skips regular doctor exams, please know you put yourself at risk and things such as thyroid cancer being caught, can’t happen if you don’t make the appointment and keep it. I will forever be grateful to my doctor for catching it. Had it been left, I might not be here today.
For those of you dealing with this, please don’t be afraid to reach out. If you have questions beyond what I’ve covered here such as financial questions or dealing with friends and family, or anything at all, please ask.
As for dealing with your doctor??
Ask what’s next?
Ask what if?
Ask what to watch for?
Ask what they are looking for?
Ask why this test?
This is your life. You are paying for the answers to all of these questions. Ask them. Ask everything you can. You will feel so much better. Set up a computer contact with your doctor through the clinic they work at. Ask questions there if you don’t feel comfortable asking in the office.
The more questions you ask and information you have, the better you will feel.
I HIGHLY recommend having someone go with you to your appointments. There is so much information that is given out and honestly, sometimes you are in shock and can’t collect all of the information yourself. The second set of ears, the second set of questions is so awesome to have. My first doctor was Asian. She was super nice and I loved her but sometimes, taking in new information and hearing it through her accent made it hard for me. I so appreciated having someone with me. Now I have an English as a first language doctor and I’ve been dealing with thyroid cancer for some time, I’m okay going on my own. I understand the lingo.
I’m so thankful I’ve been open about my journey…thankfully for me, it’s been a pretty good trip. I’m hoping I get more years to come, but in the meantime, I’m focusing on today.
As always, feel free to leave a comment or drop a message to me if there is something I might be able to help with. I know it’s scary. I know the uncertainty can be overwhelming. I know you never thought it would happen to you. I get it and will be here to help any way I can.