Thyroid Cancer—Hearing the Diagnosis, Preparing for Surgery and Recovery

What you need to know before having a thyroid lobectomy or full thyroidectomy—Advice for Patients from Patients who have already been treated for thyroid cancer.

with Amy Chen, MD, and Sarah Oltmann, MD  

Rather than wish you could reset your experience, here are some tips shared by individuals who have been through the thyroid cancer process already. They offer tips to help demystify the steps that most everyone can take to assure that you are caring for yourself in the best way possible once you've been told you have thyroid cancer. 

Our goal, say this group of patients and doctors who spoke with EndocrineWeb after participating in an online twitter discussion on thryoid surgery for thyroid cancer, is to help you navigate your discussion with doctors about what treatment is recommended. In this way, you can prepare yourself to more comfortably and confidently to get through the experience—of thyroid cancer surgery— wisely and well-informed. 

Do ask your doctor what kind of scar will be left after your thyroid surgery. Diagnosed with thyroid cancer? Picking an experienced thyroid surgeon and being prepared with questions will assure that you have a much better experience. Photo: catinsyrup @ iStock

Don't Wish You Had Known More before Thyroid Surgery

When your doctor tells you that you have thyroid cancer, you’ll probably hear very little else for a bit as your head fills with noise drowning out the sounds around you, even the doctor sitting in front of you. So you can be forgiven for not remembering everything your health practitioner and surgeon may tell you about your surgery and the recovery process.

Understandably, once you’ve gone through it, there are likely to be many more unanswered questions, or surprises that you have faced during your recuperation that you could not possibly have anticipated.

However, a few individuals who have gone through the process, shared their memories and offer some tips that they wish they had known or been told so their journey could have been less uncertain and much less stressful.

“You are given a lot of information about the surgery,” says Penny A of Whitinsville, Massachusetts who shared her thoughts on a twitter chat coordinated by ThyrCA.org, “but I had really bad mood swings right after having my thyroidectomy, and they lasted for a few weeks at least—I wasn’t quite prepared for that. 

I remember being on edge, on the verge of bursting into tears one minute, and feeling in control and fine the next minute, Penny says. "When I went into the consultation for my thyroidectomy, we talked about everything except mood swings.

This effect was on the paperwork but it didn’t really register or seem important; I was much more worried about the physical aspect of recovering from the procedure than thinking about what might happen afterwards.”

Sharing another lesson learned—Penny wishes she had followed her surgeon’s advice on taking pain medication after her procedure. “Don’t be afraid to take the painkillers, especially in the 24 hours or so,” she says. 

With all the talk of opioids, “I was afraid to take them and I was needlessly in pain for the first day because of it. My doctor was aware of the addictive qualities of a prescription pain killer, and that's why he only prescribed the bare minimum pills. At least on the first day, you're going to glad if you take them,” says Penny. After that, take it one day at a time. 

The Right Surgeon Matters as much as Having the Right Thyroid Procedure

Rick Y of Boston, Georgia, has had two bouts of thyroid cancer, leading to two surgeries, the most recent this past December. His first surgery, which he had four years ago, was done by a general surgeon, and in retrospect he wishes he had found a thyroid surgeon, someone who specializes in the kind of surgery he needed. He made a point of doing this for the second surgery.

“He was much more informative and descriptive about what his plans were before and after my surgery, and he coordinated very closely with my endocrinologist leading up to the surgery,” Rick says of his second surgeon.

Choosing the right doctor for your surgery is something that Amy Chen, MD, MPH, director of surgery and the Willard and Lillian Hackerman Professor of Otolaryngology, Head and Neck Surgery at Emory University in Atlanta, suggests you ask your primary care doctor to help you with; this is a hard decision to make on your own.

You should ask for assurance that both your endocrinology or primary care doc and the surgery  will be communicating with each other so preparations for surgery are well understood, and that post-surgery follow-up is smooth and easy for you. It’s important that you know that surgeon and endocrinologist are on the same page with the same plan, says Dr. Chen.

The existing, and sometimes long relationship between patient and endocrinologist can benefit the patient. Often, being in close contact with the referring physician will raise useful information to the surgeon such as whether a patient is afraid of surgery, or if there are other medical issues or preexisting conditions that may impact the surgery or your recovery.

Gain Comfort of Others Already Treated for Thyroid Cancer

However, Dr. Chen says that as a surgeon, her ability to talk effectively about many aspects of recovery is limited. Therefore, having a good endocrinologist is the best person to look to explain what to expect after the surgical experience.

She shares this recent example: “Just yesterday, I had a patient asking me about what his levothyroxine dosage would be after surgery. I explained that I would give him an amount that would be based on his weight to start but that his endocrinologist would be the one tweaking the amount to get is right going forward.”

Sometimes, doctors and even patients will talk about thyroid cancer as “the good cancer.” This happens because the treatment is straightforward (ie, removing a portion or the whole thyroid gland) and the outcomes and your prognosis are often uncomplicated and good. Yet, you are likely to be focused more on the “cancer” than on the “good”, says Rick.

The worry that comes from any news of cancer, is likely to leave you feeling bad, sad, and scared, he adds. Having a therapist has helped Rick deal with fears as well as adjusting to his life following the surgeries as his new “normal”.

Whether the thyroid cancer is easy to treat or not, “you still have to process that word,” says  Sarah Oltmann, an assistant professor of general surgery at the Harold C. Simmons Comprehensive Cancer Center in Dallas, Texas, who was going through her surgical training when she was diagnosed with thyroid cancer. “It can take time to believe you will be okay. You have to allow forsome time to go through that,” Dr. Oltmann says.

She adds that she feels fortunate that she had professional knowledge and some experience in treating patients when she was then faced with a diagnosis of thyroid cancer. The one thing that helped the most, she says, was meeting with a former patient who had already gone through surgery and recovery after her diagnosis but before she had surgery.

“I had the chance to ask this former patient what the first couple of days after her surgery felt like, what she could eat, and when her energy returned,” says Dr. Oltmann. This experience, she adds, speak to the benefits and power of appropriate social support, including personal encounters like she had, or support groups, even online chat rooms.

Support was very much lacking when Brittany M was diagnosed with thyroid cancer at the age of 13 years. Dr. Chen says we’ve come a long way in treating children who are found to have thyroid cancer. At the time, Brittany,  who now works as a thyroid cancer researcher, was worried about issues that are typical for a teenager:

  • How large would the scar be?
  • How visible would the scar be and would it always be noticeable?
  • Would she still be able to swallow?
  • Are there any foods that she wouldn’t be able to eat?
  • Would her voice change?

“When you are a teen, you lack the mature peer support you need,”  Brittany says when looking back at her experience. Knowing that a small percentage of people experience voice issues might be scary when you aren’t told that with vocal exercises or speech therapy, most changes are temporary and can be overcome. Being told about possible adverse events and what to expect during your recovery is definitely very helpful.

You Can Never Ask Too Many Questions but You Can Ask Too Few

Actually, people often have their vocal strength back quickly, but doctors often do not think to talk about changes in pitch that can occur. “Someone who has been singing in the church choir as a soprano may end up as an alto after a thyroidectomy,” says Dr. Chen. And, this is likely not to change back.

Like Rick, Dr. Oltmann has had to face two surgeries, and now with medical training, she wishes that she had asked more questions before agreeing to have both of the procedures. “It’s important to ask questions if something you’re been told doesn’t make sense,” she says, “and, you should feel ok asking if there are other options–both surgical and non-surgical treatments—that might work just as well for you, or even if the need for surgery can be avoided for months or even years.

If there is something causing you to hesitate or worry, it’s a really good idea to seek out a second opinion. And while your first reaction might be, “take it out, now,” know that the word cancer doesn’t always mean you need to rush to surgery, particularly with most types of thyroid tumors. In fact, with this type of cancer, you are likely to have plenty of time to plan for a second opinion, to get support systems into place, and to find a high-volume surgeon with plenty of time to spare before deciding to have your thyroid gland removed,” she says.

Don't Ignore Your Body's Need Recover after Thyroidectomy 

Many patients who shared their experiences with EndocrineWeb.com said that they expect to go back to living just the way they were prior to surgery. This raised one concern for Dr. Oltmann who mentioned that one of the most surprising things following her surgery was just how tired she felt.

“I went back to work much quicker than I should have,” Dr. Oltmann says. “During the first full  week post-surgery, I didn’t have any energy reserve.”

Most patients respond to treatment well and end up feeling just fine, says Dr. Chen. “However, we do not yet have any way to determine who will bounce back fully, and who will remain tired, may gain weight, and will not feel better for a long time.”

If you have a complete thyroidectomy, “you won’t go back to being the same right away,” says Brittany. “You WILL feel different for a while because your body has to adjust [to the right dose of levothyroxine] and it will take time for your doctor to get things properly regulated. That can be a shock if you go through the surgery thinking afterwards, it will all go back to the way it was.”

It’s important to realized that your body is using all your energy to heal, and unlike a lot of surgeries where pain limits your movement, you won’t have the same cues to tell you to do less for a while.”

While everyone is different, even Dr. Oltmann who was fit and otherwise healthy, says that you should be prepared to feel fatigue for some time after treatment. This is a common side effect for anyone who has had surgery. It can take a few weeks to a few months to get back to your original activity level, and most people do.

 

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