The 6 Injustices of Thyroid Cancer

Celebrating beautiful Jill's remission (she's on the left!).

Celebrating beautiful Jill’s remission (she’s on the left!).

Imagine if your best friend — the one who deserves one hell of a co-pay for the psych-worthy advice she doles out on a daily basis (with love and/or or a swift kick in the butt, as needed) suddenly couldn’t speak.

My lifeline, Jill Gurfinkel, had a paralyzed vocal cord for what seemed like forever. Not from cheering for her then 7-year-old son at his hockey game or yelling at him to eat his vegetables or even from litigating in Court (I don’t mess around; my chief counsel is a badass lawyer). The only thing that has ever robbed her of her voice was thyroid cancer.

In Cindy Finch’s recent HuffPo post, The 6 Injustices of Cancer, she went on and on about how thyroid cancer is like a spa day, complete with fluffy slippers, refreshing cucumber infused water, and a detoxifying steam bath compared to other cancers. Nothing could be further from the harsh reality of this insidious disease. Here are the 6 Injustices of Thyroid Cancer:

1. It’s not the “good cancer”. Jill’s doctor held her head down as he inserted eight needles into her neck to biopsy her two tumors. No anestetic was involved … and that was just the beginning of her journey to hell. Soon after, she was in surgery to remove the right lobe of her thyroid.

When the pathology results came back a week later, they weren’t “good”. One tumor was a Papillary Carcinoma and the other larger tumor was a rare form of thyroid cancer called Hurthle Cell Carcinoma. The rest of her thyroid had to come out— stat. The surgeon reopened the fresh, 3-inch scar across Jill’s neck the following morning to remove the
left lobe of her thyroid. That time, there were complications. She lost a parathyroid gland and ended up with a paralyzed vocal cord. She couldn’t breathe without coughing, couldn’t drink without choking and could barely speak.

I am not making this about me at all, but I have to say I still don’t think I am over that time that I couldn’t talk to my beloved bestie as I knew how horrifying it was for her on every level that she had cancer.

Before Jill was diagnosed with thyroid cancer at age 39, she took care of and buried both of her parents. Her dad died from pancreatic cancer and her mom of breast cancer; she knows a thing or two about suffering. And she will be the first to tell you thyroid cancer is gutwrenchingly hard.

2. The treatment is definitely not spa treatment.
How does a low iodine diet in preparation for liquid radiation after two surgeries sound? Like a massage? Jill had to have Radioactive Iodine Ablation to eradicate remnant thyroid tissue. Cloaked in protective gear, she drank a metallic tasting liquid out of a lead container and
was forced to remain in isolation for 5 days afterwards. No encouraging hugs from her son, no face-to-face food deliveries from her sister (she had to leave meals at her front door so she wouldn’t be exposed to radiation). She was alone, exhausted, and extremely nauseous. Her jaw and cheeks ached, but nothing like they would within a year from treatment when she had a stone in her salivary ducts that caused recurrent parotid gland infections (parotitis). It was excruciatingly painful and a direct effect from having radiation. Now that she does not have a thyroid, infections are much harder for her to fight off. She’s also at risk for secondary cancers, dental problems, and more salivary and parotid gland issues, among other ailments.

3. It’s not “one and done.” The “one pill a day” people like Cindy associate with thyroid cancer is a cruel joke. Jill takes 40 pills a day, administers her own daily injections, and uses several hormone creams
to address the numerous deficiencies she has now that she no longer has a thyroid. Every single day is a struggle. Many survivors spend years trying to figure out the right hormone levels and suffer debilitating fatigue, depression, adrenal fatigue, cardiac issues, aches, pains, hair loss, brain fog, weight gain, inability to control body temperature, hot flashes, edema, muscle weakness, impaired memory, sex hormone imbalance, anemia, slowed heart rate, palpitations, thinning hair, menstrual irregularities, and so on. It’s tough to be hypothyroid and even hyperthyroid for the rest of your life.

4. Thyroid cancer survivors are misfits.
Thyroid cancer survivors are often dismissed by other cancer patients like Cindy, by the medical community, and by big budget cancer organizations. Most people just assume that since thyroid cancer is purportedly “treatable” or even “curable”, it is an easy diagnosis. Imagine going through what Jill has endured and not being able to b*tch? They do not get the benefit of funding, 3-day walks, or research breakthroughs. According to the American Cancer Society, thyroid cancer is the most rapidly increasing cancer in the U.S. That’s pretty hard to swallow, isn’t it?

5. People die. For many with Medullary, Anaplastic, Hurthle Cell Carcinoma and even Follicular and Papillary thyroid cancer, their cancers are not responsive to treatment. These patients are often given other treatments (chemo, external beam radiation) and numerous surgeries in an attempt to cure their sometimes incurable disease. The only diagnostic tools they have available don’t always work for these patients either.

6. The future is never certain. Jill has blood tests every three-to-six months plus ultrasounds and body scans to monitor for recurrence. She has had a scare or two, but, thankfully, she is still in remission.

Regardless, she will spend the rest of her life worrying about whether her “easy cancer” will recur. She has to look her sweet son in the eye when he asks her difficult questions about her disease. As if that’s not enough of a burden to bear, she also has to school insentitive women like Cindy on what it’s really like to be a thyroid cancer survivor.

Do you think thyroid cancer survivors are treated fairly?

Want more? Here’s Jill Gurfinkel’s response to Cindy Finch’s article.

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16 Responses to The 6 Injustices of Thyroid Cancer

  1. Julie says:

    Thyroid Cancer nearly killed me. I went undiagnosed for many years and my cancer spread. Radiation was no joke, as it caused me much pain and suffering for years after. Take one pill a day after surgery is a complete farce. The synthroid they gave me put me in a living hill. My body deteriorated and I suddenly found myself with seven specialty doctors. Endocrinologists are not properly trained to treat us. They have no real clue what the correct testing and treatment is that will truly help us live optimal lives. Endocrinologists always dismissed my screaming hypothyroid symptoms or blamed them on another “unrelated” illness. The only salvation for me has been coming across people like Jill and Janie Bowthrope M.E.d. author of Stop The Thyroid Madness. And now, YOU! Thank you so much for writing this on our behalf! God Bless you for it !!

    • TJ says:

      A little over five years ago, I went to the doctor with a run-of-the-mill sinus infection. But then she found a large goiter (5cm) on my thyroid. How I never knew it was there I still don’t understand – it was very obvious once it was pointed out to me. Ultrasound also found several smaller nodules. My health had actually been declining for several months, but when I mentioned the symptoms to my doctor, it had been dismissed as related to other medical issues that I already had. Three weeks later, I was diagnosed with thyroid cancer. I found out that news while I was in the car on my way to the airport to fly to Pennsylvania to celebrate my dad’s 60th birthday – long story involving a temporary worker at my ENT (covering for a lady on maternity leave) who neglected to schedule me for a follow-up appointment to actually get the results of my biopsy. So I got to get off a plane later that afternoon to tell my parents in person “Guess what? Your oldest daughter has cancer.” I had also heard, through research done while I was going through all my testing, that this was the “good cancer” and I downplayed what I was going through, especially since a cousin in PA had just gotten out of the hospital after a double mastectomy due to her second bout of cancer (she had survived lung cancer 22 years earlier). When I got home and finally saw my doctor face to face, I found out that I had both papillary and follicular thyroid cancer and was scheduled for surgery four weeks later. I knew I was going to have surgery regardless of diagnosis just due to the size of the tumor as it was pressing on my windpipe, but I was going to wait until I finished graduate school in five months before having surgery. Finding out I had cancer blew that timetable all to hell, with extreme consequences later. HINT – do not ever go through cancer treatment while both working full-time and going to school full-time. I nearly had a nervous breakdown a month after I finished my MBA – I had been pushing myself so had to get through treatment and work and school while pretending all was well that it took a toll on me when everything was finally over. I had only taken a week off work when I had surgery and another week when I had RAI. The only accommodation I made for school was to take the mid-term for one of my classes late because it was on the same day as my surgery. Because I was receiving tuition assistance from my employer, I could not just up and quit school, even for a semester or I would lose my benefits – and after all, I was almost finished with my degree so why quit? Like Julie, my health has steadily declined since cancer. Five years later, my thyroid hormone levels are still not regulated. I have a host of other medical issues too numerous to list. Several of my doctors – I have numerous specialists too – tell me to lose weight and that will help with some of my issues. Yeah, right. You try to lose weight when you’ve been on a hypo/hyper roller coaster for five years. A few months ago, I had a recurrence scar when abnormalities showed up on an ultrasound which they thought might be thyroid tissue growing back (at least THAT turned out to be nothing, the one bit of good medical news I’ve had in the last five years). So now I’m 43 years old with a graduate degree and getting ready to take a disability retirement at work (my doctor signed the paperwork on this past Tuesday). Sometimes I joke that the cancer may not have killed me, but the “recovery” just might. Sometimes, I envy my dad. He is a 15-year prostrate cancer survivor and he did have it fairly easy – radiation for a few months and that was it. I wish I had it that easy. That’s my experience with the “good” cancer.

      • Mommy Dish says:

        Wow, TJ, you have gone through a lot. It’s unbelievable what you were able to juggle during such a devastating time. I am sure you will make the most of your retirement by giving yourself the time you need to continue to recover, and by sharing your story. Keep fighting.

    • Mommy Dish says:

      So glad you have met Jill and others who inspire you to keep going, Julie. You are your own best advocate. By banding together, all survivors will not only educate the masses about the cruel realities of thyroid cancer, but also demand better treatment. All my best.

    • Mommy Dish says:

      So glad you have met Jill (one of my favorite people in the world!) and others who inspire you to keep going, Julie. You are your own best advocate. By banding together, all survivors will not only educate the masses about the cruel realities of thyroid cancer, but also demand better treatment. All my best.

  2. Ninfa Depalma says:

    Thank you SO MUCH for the “6 Thyroid Cancer Injustices” that you have share. As a fellow thyca warrior I have had several of these same injustices and others that could be added to the list.

    Since our bodies are all individual we all have some of the same issues and then there are those that are totally different and destructive. I have lost several thyca sisters last year alone, these wonderful women were all young in there late 20’s, all were wives, moms of little children, daughters and sisters and grand-daughters. All three were a huge loss that fought with all their might!!!

    I’m 60 yrs old and have been at this for 13 years I also lost a Parathyroid when I had my Thyroidectomy (TT). I was naive enough to trust the Medical community and believe that it was a “piece of cake” as my Endo put it. for five years afterward I was okay, never like i had been prior to the TT. I have been blessed with a wonderful understanding husband who has been with me through everything, including surgeries, appointments, counseling, everything that has to do with fighting this DAMN cancer, even driving us 5 hours to my appoints at MD Anderson in Houston!

    I’m now a Stage 4 Metastatic Papillary thyroid cancer patient with no cure insight. I’m on an inhibitor to stop the progression of the Lung mets but yet the nodes continue to grow on the thyroid bed (one is right by my windpipe)!!!

    I feel blessed because I’m still able to do most things except work, follow directions, drive on the freeways, and other things. I educate anyone that is interested in my situation (Once on a flight from Houston I educated a young Medical Resident who noticed my hospital bracelet still on my arm. He thanked me for opening his eyes to the realities of thyroid cancer).

    Again Thank you for your understanding and support of Thyroid cancer Patients!!! God Bless you!

    • Mommy Dish says:

      Thank you for taking the time to comment here and share your story, Nina. I am glad you have a support system and access to MD Anderson; so important when you’re dealing with so much. Keep fighting.

  3. Crystal Harper says:

    Thank You! I’m new to this whole Thyroid Cancer afterlife (I had my thyroid removed in August) and appreciate the time you put into writing them and helping with the fight!

  4. sarah says:

    Thank you for this!

    My husband died of medullary thyroid cancer at age 28. It had spread to his liver, and there was nothing they could do. People dismissed his disease because it contains the word “thyroid”. That’s the easy one, right?
    Not so much!

  5. Angela D Andrew says:

    Hi my name is Angel.. My story is a little different, I was 27 and misdiagnosed with thyroid cancer. They did the painful biopsies, all I could do was squueze my mothers hand wishing it would all be over. During the surgery to remove my vocal cords the doctor who misdiagnosed me, severed the reoccurant laryngeal nerves resulting in bilateral vocal paraylsis. I was hopeful that i might get back the usage of my cords. The first year i was at a whisper, and refusing the only treatment for bilateral vocal cord paralysis, which is a permanent tracheostomy. At 18 months post thyroidectomy I finally got the trach, i was starving for air so badly. Ive been through so many emotions. I was able to have an experimental surgery at the Mayo Clinic in Rochester, Minnesota. There I also received a silver tracheostomy tube (inner and outer canula) with speaker valve. It looked like a choker. So many didnt notice the trach, but there have been a whole lot of people who have and always ask me what happened why I would have a trach so young. I always have to tell the story. When going to have an invasive surgery like this, you should always have a specialist who has performed this surgery alot, and get second opinions. I cant express enough about getting second opinions. My life is not how I planned at all..Id love to write a book telling about my life.. Im 39 now, its been 11 years. So much has happened, I want to tell it to the world… you can find me at Angel D’Andrew on facebook…

  6. Nicki says:

    Thank you for sharing this. I am one month post TT because of Follicular & Papullary Carcinoma. Im very frustrated with my Endo at the time. I feel shes not listening to me & willing to to do certain lab work. She has me on a T4 only medication & isnt willing to be more openminded to the new ways to treat ThyCa patients.

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