The not so good “good” cancer
Kathryn Vinson, MS, CCRC
Having had Hashimoto’s Thyroiditis since I was 10 years old, I knew that I was prone to developing nodules on my thyroid, and I knew that every time one popped up, there was a 10% chance that it would become cancerous. What I wasn’t planning on was being 27 years old and pregnant when I got that diagnosis. Thyroid cancer symptoms can be virtually silent as they were in my case, or they can manifest with pain, difficulty swallowing, lumps in the throat, and hoarseness to name a few.
Those of us that have fought, or are continuing to fight, thyroid cancer have heard, “at least you got the good cancer” till we are blue in the face. Its not easy to hear this, knowing that the people that say it mean well, but it doesn’t feel like the “good” cancer to us.
In a perfect world, when we are diagnosed with papillary or follicular carcinoma of the thyroid, the tumor is found early and hasn’t spread outside one lobe of the thyroid. The docs can perform a partial thyroidectomy and we might not even need radioiodine therapy. Boom – done! This would be the “good” that we hear about so much.
Unfortunately, for a lot of us, this diagnosis is bad, or straight up ugly. For me, my diagnosis came ten days after I found out that I was pregnant. It wasn’t until I was 15 weeks pregnant that I could safely have a complete thyroidectomy. We had to wait that long for they safety of my unborn child. While most patients that need radioiodine therapy get that as soon as their TSH levels are high enough following thyroidectomy, I had to wait until after my son was born. I also had to stop nursing him when he was two months old, as my endocrinologist wanted the thyroid cancer treatment completed within a year of my diagnosis. One interesting thing I learned then was that a lactating breast absorbs more radiation than a non-lactating breast; given this, we decided to stop nursing well in advance of my treatment.
The time that I had to be off all of my thyroid replacement meds was horrible. No thyroid meds and a low iodine diet does not make for a pleasant version of me. Many thyroid cancer patients refer to this period in our treatment as “hypo-hell”. As miserable as I was, my poor family also had to deal with a sluggish, brain fogged, fussy me. After six weeks of this joy, my TSH had finally come up enough. I was lucky in that I was able to receive my radioiodine on an outpatient basis, but I couldn’t be around my kids for a week afterward. But oh – that first amazing meal when you are allowed to eat a normal diet again – blissful. A word of caution to those of you going through this – when you are finally allowed to eat a regular diet again – don’t go crazy and eat seafood fondue – this was not my brightest idea ever. Ease your tummy back in to your regular diet.
Following the treatment, I had scans every six months for a couple of years, and core biopsies a few times on lymph nodes in my neck when they appeared off. Its been almost ten years now and I’m thrilled to be able to say that I am cancer free.
Not everyone is as lucky as me though. A friend of mine, who had the same types of cancers that I had, has developed radioiodine resistant carcinomas. Over the last eight years, she has battled recurrences and the effects of taking so much radiation internally. Through all of it, she has maintained her beautiful smile and a positive attitude. This is something that she will battle for the rest of her life.
One thing that both my friend and I have found helpful through our journeys are support groups on social media. These groups are often closed groups, which is a blessing, as discussed on Cancer Horizons support of closed Facebook pages.. Regardless of the type of cancer that you or your loved one is dealing with, these groups provide a lot of love and comfort from folks that have been there and understand the trials that you are going through. Please also check out our thyroid support groups to advocacy and support groups for thyroid cancer. Finding low iodine recipes via these groups was such an amazing help.
If you or a loved one are diagnosed with a thyroid cancer, its my fervent prayer that you wind up with one of the more easily treatable cases. Regardless of how easily treatable, or resistant to treatment your case is, know that you are not alone! Reach out to us here and inspire our community with your own very personal story. You never know, your journey may help a fellow warrior.