Kelley Pratt survived medullary thyroid cancer | fine needle aspiration | thyroidectomy | lymphedema

DESCRIPTION

When Kelley Pratt went in for a routine physical, her doctor found a large nodule sticking out of the left side of her neck.  That led to an ultrasound, then a fine needle biopsy.  An ear, nose and throat surgeon viewed test results and told Kelley she had medullary thyroid cancer.  This diagnosis involves a neuroendocrine tumor that can only be addressed with surgery.  Kelley was fortunate to have an outstanding surgeon and the procedure led to survivorship.

Kelley is a registered nurse from Birmingham, Alabama, but in 2004, she was living in Missoula, Montana, and thought her showing up for a routine physical would be…routine.  When her doctor felt Kelley’s neck for lumps and bumps, he found a golf-ball sized tumor in the left side of her neck.  He wanted her to undergo further testing and called for an ultrasound, then sent her to an ear, nose and throat surgeon who viewed its results, and told Kelley she either had lymphoma or thyroid cancer.  The ENT sent her to get a fine needle aspiration, in which a needle into the tumor, and at age 32, Kelley Pratt was diagnosed with medullary thyroid cancer.

This is a rare type of thyroid cancer.  Because it involves a neurodocrine tumor, the cancer technically doesn’t come from the thyroid and as such is not treated like other thyroid cancers.  The other three thyroid cancers can be addressed with radioactive iodine therapy or chemotherapy.  Her cancer was going to require surgery. 

Kelley said she was quite fortunate in that she had a surgeon in Missoula who was experienced in dealing with medullary thyroid cancer.  Her first surgery was conducted with a thoracic surgeon.  It was a sternotomy and a thyroidectomy, removed the metastasis by splitting her sternum, then removed her entire thyroid, an eleven-hour surgery.  The procedure left her with a scar from one side of her neck to the bottom of her neck, down to her sternum.  It also did nerve damage.  For the first year after the surgery, Kelley was unable to lift her left arm. 

Even though eventually healed in full, she could not return to work right away, but it was when she could return, that Kelley felt her journey was taking a turn for the better. 

Kelley Pratt says these days, her health is about 70 percent of what it was before her diagnosis.  She can still go on long hikes and has full range of motion in her left arm, but occasionally experiences lymphdema, which causes swelling due to a buildup of lymph fluid.

By way of advice, Kelley says for anyone diagnosed with medullary thyroid cancer to be sure to find a care team well-schooled in the treatment of this rare cancer.

Additional Resources:

Support Group:

Thyroid Cancer Survivors’ Association: https://www.thyca.org

TRANSCRIPT

Bruce Morton: Greetings and welcome to the @CancerInterviews podcast.  I’m your host, Bruce Morton.  When you and I go in for a routine physical, we expect it to be…routine.  But for our guest in this episode, what began as a normal physical became unforgettable, and not in a good way.  Not only was Kelley Pratt of Birmingham, Alabama diagnosed with thyroid cancer, but addressing the diagnosis required a massive procedure.  And yet, years later, Kelley is here to talk about it.  Now it’s time to hear her story.  Here she is, Kelley Pratt, and Kelley, welcome to Cancer Interviews.

Kelley Pratt: Thanks, Bruce.  Thanks for having me.  Yes, it was just a physical.  It was supposed to be a normal day.

BM: And it turned into an abnormal day which we will explore momentarily.  But for now, we want to start out the way we always start out and that’s to learn more about, Kelley, exclusive of your cancer journey.  We would like you to tell us where you are from, what you do for work and when time allows, what qualifies as fun?

KP: I am from Huntsville, Alabama.  I live in Birmingham now.  However, I did a crazy thing when I was 23 and moved to Montana and lived there for almost 20 years.  That’s where most of my cancer journey was.  I love everything outdoors, camping, hiking, anything on the water, kayaking, I’ve got two labs, so, playing with the boys, taking them for walks, I garden, I have lots of vegetables and flowers I take care of, and I am a registered nurse, although I am not working now, but for most of my career, I was a dialysis nurse.  I have been a nurse for over 20 years.

BM: Your cancer journey.  It began in a way that might sound kind of normal at first but turned abnormal.  Tell us how everything started.

KP: I went in, in 2004, I went to have just a regular routine physical.  I hadn’t had one in a couple years.  The doctor was very thorough and palpated my neck, which means he just felt my neck for lumps and bumps.  The thyroid is a gland that is butterfly-shaped and kind of in the middle of your throat area.  When it is enlarged, you can really see it.  So, he noticed that and when he was feeling around, he felt a big nodule, and it actually dislodged.  After he did his exam, I had what was the size of a golf ball sticking out of the left side of my neck.  That concerned him.  He then wanted me to undergo further testing all in that same day.  He knew something was wrong.

BM: And what did that testing consist of?

KP: From there, he wanted me to do an ultrasound.  He wanted me to see an ear, nose and throat specialist, but said the ENT would want to see the results of the ultrasound, so let’s go ahead and do it.  I was laying down, I was 32, I was by myself because it was just a physical, and the ultrasound tech got very quiet and started asking me questions like have I had any trouble swallowing or coughing or am I experiencing some hoarseness.  I said no to all of those questions.  She got very quiet, and said she would bring in the doctor.  He came back and started looking at my neck through the ultrasound wand and started asking the same questions.  That’s the first time I knew this was serious.  He said he was not going to do any sugarcoating and said at my age, this is going to be either lymphoma or thyroid cancer.  That’s how that day went and after that I had referral after referral. 

BM: So, what led to the diagnosis?

KP: He sent me to have a fine needle aspiration that they stick into the tumor in your neck.  They did this on this big nodule in my neck and the results came back as medullary thyroid cancer.  I got the diagnosis in my ear, nose and throat surgeon’s office, which wasn’t a great thing because I had done a little research.  Of the four types of thyroid cancer, this was a very rare one and one I really didn’t want to have. 

BM: And how does medullary thyroid cancer separate itself from the other three types?

KP: That’s a great question.  Medullary is more of a neuroendocrine tumor.  It doesn’t come from the thyroid, so it is not treated like the other thyroid cancers.  Most thyroid cancers are very treatable and require surgery to remove the thyroid.  You might get radioactive iodine treatment and then you’re fine.  With medullary thyroid cancer treatment, in 2004, there was no treatment.  Regular chemotherapy and radiation didn’t work, so, the only thing to do was surgery.  With medullary thyroid cancer, we just started surgery after surgery.  It has a tumor marker that we can follow in the lab work so that would tell us when more disease was happening.  That’s how I got my medullary diagnosis.

BM: At the time you were an RN that affords you a greater degree of medical knowledge than the lay patient, did it help or hurt one way or the other that you were a nurse and a patient at the same time?

KP: It is definitely hard to be the patient when you are used to taking care of people your whole life.  I have nurses in my family also, my mother and my sister, so having that kind of background, I knew I needed to do some research and find the best surgeon that could handle this procedure.  All the research led me to find a group called ThyCa.  It is a great support group for all kinds of thyroid cancers, all the guidelines for how you treat cancer, lots of educational materials.  That’s been a huge support for me.

BM: In terms of your diagnosis, you had found out that you this rare type of thyroid cancer and that was going to be tougher to treat than the other types of thyroid cancer, what was your treatment going to consist of?  It sounds like it was going to require more treatment than the others.

KP: It required surgery.  I was fortunate I had an excellent surgeon in Montana who had seen medullary thyroid cancer.  I did have that first surgery with him alongside a thoracic surgeon who removed the metastasis in my chest by splitting my sternum, so I had two world class surgeons that were right there at my fingertips that really saved my life.  At that point, it was I was told there was a 15 percent chance I survive for five years, and here I am, 18 years later, and I really do credit all of this to that fantastic first surgery.

BM: I think I know the answer to this question, but I still want to hear it in your words.  How important is it to take the steps necessary to make sure you have the best possible care team?

KP: With rare cancers, it’s the absolutely best thing you can do to lengthen your life, it really is.  Many doctors don’t know medullary thyroid cancer.  If you get that diagnosis, and you have a surgeon that does thousands of thyroid surgeries, often they don’t know how to do a medullary thyroid cancer surgery.  It is much more extensive, so finding an expert surgeon is the best thing you can do.

BM: Montana is a big state.   Did you have to travel a long way to find the right surgeon and were there subsequent long commutes?

KP: Actually, no.  I was very fortunate.  My expert surgeon was right there in my hometown of Missoula, Montana.  He had operated on many, many medullary patients.

He had taught fellows and residents medullary thyroid cancer surgery, and I was luckily in great hands. 

BM: The procedure itself.  It was not just on your thyroid.  You mentioned your sternum being split.  Where did the procedure take place within your body?

KP: Neck and chest.  I have a scar that runs from one side of my neck to the other, and then from the bottom of my neck, down my sternum.  That did a total thyroidectomy, which means they removed the whole thyroid, and they took out all the lymph nodes in both sides of my neck.  I also had extensive disease in my chest, so by splitting my sternum, they were able to get all the disease they could see.  I was told it was an eleven-hour surgery and I know that’s why I am here now.  They were awesome.

BM: Kelley, two-part question.  Part one, of the treatment, physically, what was the toughest part?

KP: Having a sternotomy is tough.  There is a lot of pain, and it takes a long time to heal, but in these neck surgeries that are so intense, there is nerve damage that can be done and that is very normal.  They strip the nerves to get all the nodes off the nerves.  That’s how they described it to me, so I lost the ability to raise my left arm for almost an entire year after surgery, so even when I healed, I wasn’t able to go back to work.  That was hard physically with the arm troubles and my chest, I think those were the toughest part of the surgery.

BM: Emotionally, what was the toughest part?

KP: Just being used to taking care of people and allowing people to take care of me.  I am not very good at that, but I have lots of friends and family that would come and stay and help.  It’s hard to put into words, but it’s very true.  You don’t know how it is until you in that situation.

BM: We had earlier talked about ThyCa.org helping out in the early stages of your cancer journey, but what about the stages after your surgery?

KP: I found their support group.  They have different support groups for each type of thyroid cancer, so with medullary thyroid cancer, it is so rare, it is only two or three percent of all thyroid cancer, so, meeting another person with medullary thyroid cancer anywhere close to you is usually not an option.  Having a big support group of other medullary patients and their caregivers was huge.  Helping to know that what I was doing was correct and I am on the right track meant a lot.  They got me in touch with the guidelines in terms of what my doctors should be doing.  They have yearly conferences that we could go to and I went to my first one about six months after my surgery.  There is a huge amount of information, expert surgeons, clinical trials coming up and just the support of meeting another medullary cancer person, we call each other “meddies,” face to face, there’s nothing like it, and 18 years later, I am in contact with several of them every single day.

BM: Kelley, it sounds like you had experienced some things along the way that were trending in a good direction.  When did you sense that your journey was taking a turn for the better?

KP: I guess when I could get back to work.  Everything seemed to be stable.  We just watched my labs, and I was feeling better, got back to work, got back into my groove.  I wasn’t really able to do all the things I liked to do before, just because of pain or fatigue, but, getting back into a groove of work and going out with friends, going camping, things like that.

BM: And you eventually reached a point in which you could say you achieved survivorship.  How did that feel?

KP: You know, that word for me is kinda weird.  I first learned the word ‘survivor’ when I did the Relay For Life.  We were called survivors, and with medullary thyroid cancer, there is no cure, so we are never truly cured unless at the very beginning our disease is very small and they’re able to get absolutely all of it.   For me, I’ve been a survivor for 18 years, but I have also had cancer in my body for 18 years, so it was more of like a chronic illness, so, being a survivor, it’s hard in a different way with medullary thyroid cancer.  I learned from my group that there will be ups and downs.  You will go for a long time without anything bad happening and then notice that your labs might trend poorly and you might need further treatment.

BM: To some degree, Kelley, you have answered this question, but perhaps if you would answer it in full, that would be great.  These days, physically, how close are you to being 100 percent?

KP: Maybe 70 percent.  I can still do everything for myself.  I can get around, I can do all the fun things.  I am just quite as active as I used to be with long hikes or things like that, but doin’ pretty well.

BM: Do you have full range of motion in your left arm?

KP: Yes, I do.  I got that back and I have some lymphedema on that side from other surgeries, but, yes, I do.  Full motion.

BM: Kelley, we’re going to wrap things up now, and we are going to wrap things up the way we always do.  If you found yourself one-on-one with someone who has just been diagnosed with medullary thyroid cancer, you would probably have a message for them; within that message, if there is one thing that stands out about all else, what would it be?

KP: First, I would say to take a deep breath and that it’s gonna be okay.  Next, I would say, please get to an expert team that knows medullary thyroid cancer.  Get the guidelines from ThyCa.org, they’re developed by the doctors, follow those and it’s going to be okay.

BM: Kelley, thank you so much for sharing your story, we’re glad to hear it and we’re glad you are here to share it.  So, thanks very much for your time, really appreciate it and I am sure this is something that will hit home with a lot of people viewing and listening.  Thank you!

KP: Thank you, Bruce.

BM: And that is going to conclude this edition of Cancer Interviews.  We want you to remember if you or a loved one is on a cancer journey, that you are not alone.  There are lots of people just like Kelley out there who can help; so, until next time, we’ll see you on down the road.

Additional Resources:

Cancer Interviews:  www.cancerinterviews.dom

Support Group: Thyroid Cancer Survivors’ Association: www.ThyCa.org

SHOW NOTES

TITLE:  Kelley Pratt, Thyroid Cancer Survivor – Birmingham, Alabama, USA

What began as a routine physical for Kelley Pratt turned into a diagnosis of medullary thyroid cancer, a rare form of the disease. As if that wasn’t bad enough, it was determined the cancer had metastasized to her chest. However, Kelley was in the hands of an outstanding care team, and she has been in survivorship since 2004. She shares the story of all she overcame with the @CancerInterviews podcast.

Additional Resources:

Thyroid Cancer Survivor’s Association: https://www.thyca.org

Cancer Interviews: https://www.cancerinterviews.com

Time Stamps:

02:50 At a regular doctor visit, the doctor noticed Kelley’s thyroid was enlarged.

04:40 She underwent an ultrasound.

05:50 Remembers getting her diagnosis.

06:19 Defines medullary thyroid cancer.

09:32 Said the treatment required surgery.

12:34 Kelley describes her eleven-hour surgical procedure.

13:36 Names the physically-toughest part of the treatment

14:33 Names the emotionally-toughest part of the treatment.

18:04 Kelley recalls when her treatment started trending in a positive direction.

20:17 Asked how close she is to being physically 100 percent.

KEYWORDS (tags):

thyroid cancer

lymphedema

cancer

thyroidectomy

cancerinterviews.com

medullary thyroid cancer

bruce morton

fine needle aspiration

kelley pratt