An Open Letter to All Newly Diagnosed Thyroid Cancer Patients

woman touching neck
Advice for those who are newly diagnosed with thyroid cancer.

Dear Friend,

I am sorry to hear about your thyroid cancer diagnosis and wish that you were not being forced to join the community of thyroid patients. But with your strength and determination -- combined with good medical care -- I predict that you will quickly be joining the community of empowered thyroid cancer survivors who go on to live long, happy, and healthy lives.

Speaking of thyroid cancer survivors, if you haven't already, I recommend that you get connected right away to The Thyroid Cancer Survivor's Association.

This group was cofounded by a dear friend of mine, Ric Blake, who was a tireless advocate for his fellow thyroid cancer patients. They have information, support groups, listservs, a website, a newsletter, and an annual thyroid cancer conference featuring the best and brightest medical experts on thyroid cancer, as well as inspiring patients who are experts at knowing how to live well after thyroid cancer.

As for your surgery, make sure that the surgeon who does your thyroidectomy is experienced. For thyroid surgery, not just any general surgeon or head and neck surgeon will do. You want someone who does a substantial number of thyroid surgeries each year. The more experienced the surgeon is with performing thyroidectomies, the lower the risk of any surgical complications from the thyroid surgery.

One thing I often tell people who are having a thyroid surgery is that because the surgery puts your neck in an awkward position for a few hours, don't be surprised if you feel some neck or back strain afterwards.

As soon as your doctor says it is okay, schedule a gentle massage to help work out the tightness.

If you would like to know more, you may want to read this article on recuperating from thyroid surgery.

Some thyroid cancer patients who have encapsulated or small cancers of certain types -- papillary thyroid cancer in particular -- are now being treated only with surgery, followed by suppressive or higher dose thyroid hormone replacement, with periodic follow-up testing to detect cancer recurrence.

I hope this is the case for you, as a "cure" for this type of cancer is highly likely.

Even if you are one of the many patients with thyroid cancer who commonly requires radioactive iodine (RAI) treatment to ablate -- get rid of -- any cancer remnants, the outcome is likely to be very successful.

And remember, radioactive iodine is not like other forms of radiation used as a cancer treatment. RAI is usually given as one dose -- as a pill or liquid. It does not make your hair fall out or make you sick on an ongoing basis like traditional chemotherapy and radiation. It does not cause burns or skin irritation like traditional radiation can.

In your video, you said that your doctor said this, but prepared to hear others say to you that "thyroid cancer is the good cancer." You may hear this from other doctors, or friends and family, and while they mean well, it can be a hurtful thing for some thyroid cancer patients to hear. No cancer is good. But what they are trying to say is that most thyroid cancer is survivable -- a good thing -- but when they say it like this, it rubs some patients the wrong way.

Try not to worry about your scar. A great surgeon knows how to position the scar in the skin fold of the neck so that it can be hidden once it heals.

It will be red and angry looking for a while, but it will fade. Some patients swear by Bio-oil. Others like Mederma. I have heard from patients who had good results treating scars with silicone scar tape, vitamin E oil, coconut oil, cocoa butter, and the skin cream Nerium. Do avoid the sun though while the scar is healing. You can see many thyroid patients' scars at a gallery where they have shared their photos. As you will see, with a great surgeon, many are nearly undetectable even a few months later. In the meantime, body makeup, chunky necklaces, scarves, and turtlenecks can be a girl's best friend.

Or you may just decide to rock that scar like some thyroid patients choose to do! Take a look at how  great many of these patients look in this gallery of photos from thyroidectomy patients.

At some point, whether after surgery or after radioactive iodine treatment, you will be started on thyroid hormone replacement therapy. This means that for the rest of your life, you will need to take a prescription thyroid hormone medication daily, to replace the hormone that your thyroid gland normally would produce. While most physicians tend to prescribe one of the brands of levothyroxine, keep in mind that some patients feel better, have fewer residual symptoms, and better quality of life when a T3 drug is added to their levothyroxine, or when they take a prescription natural desiccated thyroid drug. Your doctor will probably not tell you about those options, but as a patient advocate, I feel it is an important fact to mention.

Keep in mind that for some people who are being treated for hypothyroidism --and you will fall into this category after your thyroidectomy -- you may feel more fatigued than before. This is common, and hopefully, getting the right type and dosage of medication will help you get back to feeling fine. If fatigue still doesn't resolve completely, I highly recommend you read the wonderful book "From Fatigued to Fantastic" by Jacob Teitelbaum, MD.

I hope that your thyroid condition does not have much effect on your metabolism. But the thyroid gland is the master gland of metabolism, delivering oxygen and energy to every cell, tissue, and organ in the body. Even with optimum treatment, being hypothyroid can make it easier for you to gain weight, harder to lose weight, and it can affect blood sugar levels in some people. Do your best to continue to eat well, and be sure to exercise -- once your doctor gives you the all-clear. If you struggle at all with weight issues down the road, I recommend reading this interview with hormone expert Kent Holtorf, MD. You may also find my own thyroid diet story useful.

It's also crucial to stay informed. Visit sites with the latest thyroid news, and subscribe to thyroid blogs and thyroid newsletters. With thyroid disease, staying up on the latest news and information is an essential part of living well!

The bottom line is that you should never have to feel alone. You should never have to struggle with unanswered questions. And you should never have to feel like there aren't many people out there who understand exactly what you're going through...because we do.

With my very best wishes for a successful surgery, fast and trouble free recuperation, and a healthy life ahead,

Mary Shomon

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