I have had 3 conversations in the last 3 weeks with people about thyroid cancer and it being the “good one”. One of my support groups also lost a lovely, young, vibrant lady to thyroid cancer this week. So, I decided I need to write another post about it.
(Please don’t feel offended, people I had these conversations with. I feel like if I don’t use the experiences I have had to help others, then it is all in vain. I participate in several support groups because I have a lot of advice to give. I try to educate about different parts of thyroid cancer. I just want to get the word out and I’m not upset or anything.)
When most people get diagnosed with thyroid cancer the doctor says “BUT, if you have to get cancer, this is the one to get.”
Totally true. That’s exactly what my doctor said and what numerous doctors and nurses and lab techs and radiology techs have said since.
Now, I know that doesn’t sound so bad. I know that it is meant to be encouraging. In fact, I felt encouraged by it at first. But I feel it does more damage than good. The following are the reasons I feel that way.
When my doctor (whom I love) diagnosed me he said “well, you have thyroid cancer. that’s the bad news. BUT if you have to get cancer, this is the one to get. We just take it out, you do a pill form of radiation, and you take a pill for the rest of your life and you are back to normal.”
First of all, even if I had had a straight forward, simple case, this isn’t actually what happens to most of us. I know over 500 thyroid cancer survivors and none of them had that experience. ALL of them have several long term lasting effects. I compare that to the 50 breast cancer survivors I was in an IRL women’s cancer support group with, only about 50% of them had any kind of long term effects. They were all surprised by my stories of what I felt like after and how my body reacted to not having a thyroid and such. Yes, some had neuropathy from chemo, some had lymphadema, some had burns from beam radiation. All had permanent changes in their actual breasts of course. But most were able to go back to their normal life after their surgery and treatment were over. (I am not saying breast cancer is easier or better. Just comparing my experience with the long term effects.)
Here is a small list of the side effects my thyroid cancer friends experience (I will be posting again with a more in depth look at this later): Fatigue, heat sensitivity, cold sensitivity, night sweats, hormone imbalance, early menopause, hair loss, skin changes (greasy, dry, infections, breakouts), lymphadema, sleeplessness, memory loss, short term memory problems, confusion or foggy brain, joint pain, muscle pain. Hypocalcemia, hypo vitamin D (both very serious problems). Problems with digestion. The RAI (radioactive iodine) almost all of us take causes it’s own long term problems: salivary gland damage which leads to dry mouth, tooth decay, bone loss, kidney or intestinal tract scarring and complications. One woman I know had her pancreas scarred by it and has had the absolute worst digestive problems that have required surgery and more. Dry eyes, tear duct damage, infertility. Once you take a treatment dose of RAI you can’t get pregnant or nurse for a year or it can harm the baby. Just the treatment itself is torture because you have to go off your medicine to become extremely hypothyroid (I was to the point that I couldn’t walk on my own or hold my newborn) and you have to go on a low iodine diet for 2 weeks. That is difficult when you are so sick from being off your medicine because you have to cook everything yourself. But the worst part to me is being isolated after it. We are told to stay away from adults for a full 5 days and small children or pregnant women for 7. In some other countries the times are much longer. Up to a month. When my friends who had chemo or radiation went to treatments they had someone take them and hold their hand and help them home. I had to go alone (no one can be in the car with you after) and swallow a radioactive pill and then go straight home and lock myself up away from everyone else for a week. My baby (5 mos) had to go stay with my parents for a week. It was torture for me to not have that human contact with anyone. And I got incredibly ill from the dose – I threw up for days. Imagine – you just had cancer surgery, you have been sick and emotional for weeks, and now you swallow a scary radiation pill that they bring out in a lead lined box and then they rush you out the back door and tell you to go straight home. You are sick and alone and extremely emotional (that’s what being off your meds does). And you are all alone. The radioactive iodine also gives you a higher chance of getting breast, uterine, ovarian, testicular, colon and other types of cancer. The most common side effect from the surgeries alone is vocal chord paralysis (which isn’t pretty, trust me) and parathyroid damage, nerve damage, and muscle damage.
So, let’s get beyond the side effects (this is by no means an all inclusive list) and lets look at thyroid cancer itself. Thyroid cancer DOES have one of the highest survival rates. Because we have the radioactive iodine we have good success with being cancer free one day. Thyroid cancer also has one of the highest recurrence rates. If my doctor ever classifies me as cancer free, I will still have to continue following it for the rest of my life because it is likely to come back at some point. Let’s put this in perspective: one friend of mine said “well, it’s not like pancreatic cancer that is most often a death sentence.” No. It’s not. Some people die from thyroid cancer, but it’s most often from a more aggressive form of it. The most common form is papillary and we have a good treatment rate with that. If you get thyroid cancer your chances of having it treated and taken care of are pretty high. If it has metastasized outside the neck the chances of being cancer free drop considerably – just like any other cancer. If it is a more aggressive variant (like mine) it changes your prognosis. Some thyroid cancers don’t respond well to RAI and they have to be treated with other meds or just surgically removed, or sometimes beam radiation can be used. Some thyroid cancers (like mine) mutate and stop responding to RAI. These thyroid cancers become much harder to treat as well.
One of the ways we treat our cancer is to take a “suppression dose” of thyroid meds for at least several years after surgery. I have had a lot of people assume this means I will have lots of energy and loose weight. That’s not how it works unfortunately. Being on a dose that constantly keeps your TSH in the hyper range can cause you a great deal of daily discomfort. It’s like running a car engine too hot and too fast for hours. What happens to it? It burns out or has to be shut off for a while. The same happens with us – we crash daily. We learn to dole out our energy carefully. Not spending too much energy on one thing when we know we will need it later. For me this has become a delicate balancing act. I take breaks during the day to just lie down for a good 15-20 min. If I don’t I will be exhausted by dinner time. If I know I am planning an outing with my son for example, I don’t get up and take a long hot shower and cook a big breakfast and do laundry and pick up the house before we leave. I do the least I have to and go early with my son so that by the time I have used up all my energy we can be headed home. Then I have to rest at home before attending to the normal daily things. Thyroid medications are not the same as your natural thyroid hormone. They don’t act in your body exactly the same way your natural hormone does and they have their own side effects or effects on the body – especially at the high doses we take. Mood swings, irritability, depression, anxiety, sleeplessness, digestion problems, skin problems, hair loss, memory problems, heat intolerance and more. Heart problems are one of the scariest side effects. Being on this high dose gives many of us palpitations or tachycardia. I have the latter and take a daily medicine for that. I take a daily medicine to help combat the effects of the other daily medicine I take…. JUST taking the medicine we have to take every day – especially when we have to take the higher doses – changes our life dramatically. Without the medicine we would get very sick, lapse into a coma one day, and eventually die. We literally can’t live without it.
To me, the worst part of health professionals telling me that my thyroid cancer is the good one to get is the attitude that pervades the medical community about it. First of all, I had ANYTHING but a normal case. I had great treatment once we found it and I have had the best doctors. Without them I would be dead. My first surgeon spent 5 extra hours because one tumor was wrapped around the nerves that control my mouth. He really wanted to get it out without damaging them. He was actually worried I wouldn’t be able to talk when I woke up. But I could. He did a great job. My body hasn’t reacted to the surgeries the way most people’s do and I have several permanent disabilities from them. I had 4 surgeries in 3 years and several treatments. Not to mention all the blood tests, ultrasounds, PET/CT scans and more. I am thankful that I am here to spend my life with my son and other family, but my life has changed in hundreds of small ways, and I don’t think it will ever go back. To tell people newly diagnosed with cancer – any cancer – that their road will be simple or easy does them a disservice. Do I think they should scare us, do I think they should tell us horror stories? No. But I do think they should prepare us. Prepare us that this IS cancer. This MAY change your life.
As far as the medical community’s view on thyroid cancer goes, that in itself upsets me. No one knows what to do with a thyroid cancer patient who is off their meds and comes to the ER with a very high fever. (this happened to me) Very few doctors know what is best to do in a thyroid storm or a calcium crash. In many parts of the US we don’t see an oncologist. I tried to go to the major cancer center here and they told me to go back to my endocrinologist. My endocrinologist follows my cancer and she is a good doctor. But I don’t understand why a cancer center excludes a cancer patient of any kind. I missed out on all the things a cancer center offers – financial help, social workers, psych help, family counseling, etc. because I had “the easy cancer”. When I talk to my other doctors about my health issues I have to explain TO THEM why we keep my synthroid high, why I HAVE to take vit d and calcium. I have to tell THEM why I can’t take extra dietary fiber because it affects my synthroid absorption I have to tell THEM why birth control pills will affect my dose of medicine. It is a sad state of affairs when the medical community sees your disease as easy and nothing to worry about to the point that they have litte education about it at all unless it’s their specialty. It makes it difficult for us to get the care we need.
I want to talk about one more thing. Most of us have a PTSD reaction to doctors and testing and hospitals now. Most of the gals I know that went through the surgeries and the treatments and the trying to figure out what was wrong in the first place and the biopsies and the scans all have a very difficult time with doctors now. If the medical community (and lets face it – the world) tells us that our cancer is the easy cancer and doesn’t listen to our concerns, what are we supposed to feel? Surgery and treatments and tests alone make many people scared or anxious or affected in some ways long term. Couple that with the frustration of no one knowing what to do with us, and everyone telling us we got lucky when we got OUR cancer and it’s a recipe for disaster. Many of us had a hard time figuring out what was wrong and many of us have a hard time getting the kind of treatment we need long term. There are so many different “standard procedures” thyroid doctors follow in these cases that we don’t even know if we are getting the “normal” treatment or not. Even the isolation instructions vary from hospital to hospital after RAI. We don’t know how to judge whether our treatment is going well or not. How are we supposed to feel about doctors? Because at this point most thyca survivors I know have a hard time trusting medical professionals in general and have PTSD type reactions to even getting a regular physical.
This was a long post, and it doesn’t even cover all of what I find offensive about labeling thyroid cancer as a good cancer. It’s CANCER for the love of man, can’t we all at least agree that cancer isn’t good – no cancer is good? Please.
So, if you are a medical professional or know one, here is my advice. Simply change the dialogue. Say something along the lines of “Well, thyroid cancer IS normally one of the most treatable cancers out there, so I am happy for that for you. Still, I know, no cancer is easy or good and I’m sorry you have to go through this.” I believe it would go a long way toward helping out thyroid cancer patients.