Karen’s Story – Papillary Thyroid Cancer Survivor

“When I called Karen to ask her if I could interview her to write about her experience with papillary thyroid cancer, she immediately agreed and we made plans to meet at a local coffee shop. When she mentioned that she had a hysterectomy only 4 days earlier, I tried to postpone the interview because I didn’t want to be the writer who drags a woman out of recovery who had a full thyroidectomy only 11 weeks ago and a hysterectomy less than a week ago. But Karen was adamant about sharing her story. “If I can help someone going through thyroid cancer by sharing my story, that’s very important, and I really want to help. Plus, despite what my doctor’s say I know that my hysterectomy is related to my thyroid disease, and I want to help other women who may be experiencing similar symptoms. ” I was instantly inspired by her altruistic grace and strength.”

Karen’s Statistics

Age at diagnosis: 49

Age today: 49

Thyroid Cancer: Papillary – Stage 2, 3cm

Karen’s Advice to Other Thyroid Cancer Survivors

“There are differences in every doctor’s approach and in every patient’s experience. You are the expert on your own body, trust what your body is telling you, and don’t give up until you get answers. Educate yourself and do your research.  Don’t be afraid to go to other doctors for second opinions. Patience is truly a virtue, but that’s especially true with a total thyroidectomy… slow and steady as you go!”

Karen’s Story

In 2001, I was sitting at my desk at work when I found a lump in my neck. I got the lump biopsied, and the results came back as, “suspicious for thyroid cancer”. I didn’t like that so I went to another endocrinologist for a second opinion and my biopsy came back benign. I liked that diagnosis better!  I was prescribed a daily dose of 100 mcg of Synthroid to prevent the lump from growing. I started a yearly tradition of having my lump biopsied to check for cancer. Every year it came back benign. In 2013, my endocrinologist retired and my new endocrinologist told me to stop taking Synthroid. I felt fine without the medication and went on to live my life.  In 2015, my new endocrinologist’s PA reminded me to have an FNA (Fine Needle Aspiration Biopsy) since a couple of years had passed since my last one.  I was experiencing other issues like anxiety, fatigue, unusual allergies, extremely painful menstrual cycles, and sleeplessness.

When I saw the new endocrinologist it became blatantly obvious that there are glaring differences in each doctor’s approach, and I want other patients to know that if they don’t feel comfortable with their doctor that they should absolutely seek out a new one.

For example, when performing my biopsies my first endocrinologist would make my comfort a priority. He had me lay back on a comfortable pillow, put a topical anesthetic on my skin to numb the area before injecting the area with a numbing agent so that I wouldn’t feel the biopsies. He was very thorough, taking 4 biopsies of the lump on my thyroid, one from each quadrant when checking for cancer cells – but I never felt any pain.

But my experience with my new endocrinologist was totally different and painful. When I laid down he just started taking biopsies of my neck without any anesthetic and it hurt. I didn’t want to piss off the guy with the needles pointed at my neck so I asked in my sweetest voice possible, “Just curious, do you ever numb your patients when you perform biopsies?” I was trying to hint at the fact that I was in pain and I would prefer to be numbed, but I don’t think he was picking up what I was putting down.

“No, because that would be sticking the patient with 6 needles instead of just 4 needles. It’s better to do it this way.” He said.

“Better for whom?” I wondered, as I laid there feeling my cells being sucked out of my thyroid.

He had a student doctor and a pathologist in the room. He immediately put my cells on a slide and the pathologist looked at them under a microscope and declared that everything looked good. I didn’t have cancer. But then two days later, his office called and told me that I had thyroid cancer. What?!?!

I didn’t like that diagnosis – I mean who wants to have cancer. Plus, it doesn’t run in my family so to me it was unlikely that I had thyroid cancer. A good friend of mine suggested that I try to see my original endocrinologist for a second opinion. It turned out that although retired, he was working part-time so I went to see him in May of 2016. Under his care it was determined via ultrasound and biopsies that I indeed had thyroid cancer and I needed my thyroid removed.

My thyroidectomy surgery was scheduled to take place only two and half weeks after my diagnosis. I went to a ThyCa support group before my surgery because I was terrified.  Fortunately, the people there raved about my surgeon which made me feel a lot better.

I brought my dear friend with me the day of my surgery and that really helped. She’s had multiple surgeries so she told me stories about her experiences that made me laugh to distract me from my anxiety about having my neck cut open. My surgery was scheduled for 1:30, but it was delayed until 3:30 which was tough because I hadn’t had anything to eat or drink since before midnight the night before.

My surgery lasted 4 hours, and when I woke up in my recovery room my friend was still by my side.  She said, “This place is nicer than any hotel room I’ve ever stayed in.” At first I thought she was just trying to make me feel better, but it turned out that I was in the VIP Suite at Rose Medical Center! There were granite countertops, a flat screen TV, a guest suite, and a beautiful mountain view! I later found out that my surgeon had seen that the VIP suite was available and I think she worked some magic that she will neither confirm nor deny. She really is awesome!

I didn’t eat anything that night, but when I woke up in the morning I was starving and it didn’t hurt to swallow so I ate an omelet, fruit, croissant, and drank a cup of coffee. It was hard to move my head and neck which was uncomfortable, and I was very foggy from the anesthesia.  All in all I felt pretty good considering.  My surgeon checked on me at 6am and gave me the best news one could hope for.  The cancer was contained in my thyroid and had not spread to my lymph nodes. Later that day, I was released to go home.

I must admit I almost feel guilty because my surgery and recovery went so well, which I know isn’t the case for everyone. I had my thyroid and 19 lymph nodes removed, and fortunately none of my lymph nodes contained cancer. I didn’t have Radioactive Iodine Treatment because my doctor said that in my case, it could do more harm than good, since exposure to radiation can cause cancer and all of my cancer appears to have been removed surgically. Part of me still wonders if I should get a second opinion on RAI since text book “direction” reads, “ conflicting data”.   However, I do want to share my post-surgery symptoms so that if other’s experience the same, they will know they’re not alone.

My first day home post-surgery I woke up to find that my hands and feet were tingly with pins and needles, and my cheeks went numb. I didn’t know what was going on so I called my surgeon and she told me that I was experiencing hypocalcemia, which is a common side effect after total thyroidectomy surgery. It can take a while for the parathyroid glands to heal and start processing calcium again. She told me to start taking Tums as a calcium supplement and that made my symptoms subside.

I had major brain fog and was very forgetful, and the weird thing about it was that I was totally aware of my own mental deficiencies. I had trouble falling asleep at night, and I would wake up for no reason, like the wind would blow and I’d suddenly be wide awake. I’ve always had some level of anxiety, but my anxiety has increased post thyroidectomy. My joints ache constantly, and my back hurt more than usual. I had horrible constipation. And my hair has turned super dry like straw. Also, when I lean my head back I can’t swallow and I am thirsty all the time, I have dry mouth, and my lungs are wheezy.  I’m currently having TSH, T3, T4, calcium, PTH, and Vitamin D blood work done since I’m not 100% back to “normal” and fear my parathyroid glands are not functioning properly. 

It’s been 11 weeks since my thyroid was removed, and I’ve had my dose of Synthroid adjusted several times since then – from 100 mcg to 112 mcg to 125 mcg to 137 mcg to 150 mcg – and now many of the symptoms I described above have subsided and I’m feeling a lot better…well except for the time when my angry uterus tried to murder me. Let’s talk about that!

I’ve always suffered with excessive and painful menstruation. Everything I read online states that thyroid disease can cause irregular periods, but when mine got so extreme post thyroidectomy that I had to have a hysterectomy to prevent me from bleeding to death, my doctor said that the two aren’t related. Um…seriously! Because it really seems like the two are related?! I believe my excessive and chronic menstrual issues are related to my chronic thyroid disease, known as Hashimoto Thyroiditis.

I’ve always had terrible periods, painful cramping, and hemorrhaging – to the point that I’ve wanted to stay home from work because I could barely get out of bed. My menstrual symptoms were so terrible that in 2007 I had laparoscopic endometrial ablation because they thought I had endometriosis. My painful symptoms subsided for a few years, but in 2010 they resurfaced and my doctors recommended that I have a hysterectomy. I didn’t want that, so I had a second round of laparoscopic endometrial ablation. But in 2013, my symptoms returned. The pain was horrific, so my doctor made three tiny incisions in my abdomen and went in with a camera to see what was causing my pain and hemorrhaging.

I was diagnosed with adenomyosis, a condition in which endometrial tissue, which normally lines the uterus, exists within and grows into the muscular wall of the uterus. The displaced endometrial tissue continues to act as it normally would by thickening, breaking down and bleeding during each menstrual cycle. It results in an enlarged uterus and painful, heavy periods. The symptoms of adenomyosis tend to worsen over time. I was told by my doctor that the average uterus weighs 70 kg, whereas mine weighed 520 kg. The cause of adenomyosis is unknown.

July 26th was the date my uterus decided to put her murderous plan into play. I woke up hemorrhaging bright red blood, and I passed a huge blood clot. I was scared that I would die alone in my condo of exsanguination, so I got in my car and drove myself to the ER. They put me on drugs (medroxyprogesterone) to stop the bleeding and the next morning an ultrasound showed that I needed an emergency hysterectomy or else I would be in danger of a blood transfusion from blood loss in the near future. My periods had always been bad, but I think my thyroidectomy caused them to become deadly. My hysterectomy was scheduled for August 4th.

I was scared to have a hysterectomy because I thought the doctor would remove my ovaries in addition to my uterus and I didn’t want my hormones to go totally crazy – I mean I’m already down a thyroid! But I was very lucky when it came to my surgeon. He was able to remove my uterus laparoscopically, and he left my ovaries and cervix. So despite the pain of healing from surgery (my pants have been unbuttoned throughout this interview for comfort’s sake) I feel pretty good, and I’m looking forward to never having to have a revenge of the angry uterus period again!

Despite the fear, surgeries, and side effects –  being diagnosed with thyroid cancer has had a positive impact on my life. I’ve started working on my bucket list! I got scuba diving certified and went diving in Cozumel. I’ve been doing lots of volunteer work, and taking Spanish classes. Improv Comedy classes are next on my list as is almost anything else that pushes me out of my comfort zone. I feel like my bravery is increasing every day. I am learning a lot about myself and that is a gift!

_______________________________________________________________________________________

HEALTH INFORMATION

For more information about papillary thyroid cancer see: http://www.thyca.org/pap-fol/

For more information about thyroidectomy see: http://www.mayoclinic.org/tests-procedures/thyroidectomy/basics/definition/prc-20019864

For more information about low calcium levels (hypocalcemia) post thyroidectomy see: http://www.thyca.org/pap-fol/surgery/

For more information about adenomyosis see: http://www.mayoclinic.org/diseases-conditions/adenomyosis/basics/definition/con-20024740

For more information about hysterectomy see: http://womenshealth.gov/publications/our-publications/fact-sheet/hysterectomy.html

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