Patient Stories

Every person’s journey with MTC is unique. Here are some stories shared by four others living with MTC.

These testimonials were obtained from After the Diagnosis, Medullary Thyroid Cancer Memoirs and The Butterfly Sings: After The Diagnosis, Medullary Thyroid Cancer Memoirs. For options to purchase these books, visit ThyCa Spirit Items.

Far and away the best lesson MTC has taught me is that time is our most precious commodity. And the best way time can be spent is by having fun.

What Has MTC Taught Me?

Joyce Johnson

Diagnosis: Sporadic Medullary Thyroid Cancer Stage IV
Treatments: Surgery, Standard Therapy, Clinical Trial
Special Focus: Art Therapy
Age Range: 50 to 59
Location: Driftwood, Texas

In 2013 I was diagnosed with stage IV, sporadic MTC. It feels like I have spent the past five years in pursuit of a master’s degree in MTC.

So far I have learned that there is no room for second-guessing. Go forth and gather the best information to make the best decisions (regarding treatment) and move on. Do not look back. And never ask yourself, “Should I have…?” or “What if?”

Other important lessons I have learned are: housework will keep, laundry can be done by anyone, and the best way to load a dishwasher is to watch someone else do it and groceries can be purchased and delivered via online apps.

MTC has taught me that life cannot and will not enjoy itself. It is up to each and every one of us to enjoy life, more specifically our own lives.

If we’re not able to go outside, then find a favorite window and take in the view. Nature offers us so many gifts. All we have to do is look for these gifts. Make every day like an Easter egg hunt and look for a butterfly, wildflower, bee, dragonfly and/or a ladybug. And everyone knows the best tweeting is done by real birds. So lift the sash and welcome some birdsong into your life.

Far and away the best lesson MTC has taught me is that time is our most precious commodity. And the best way time can be spent is by having fun. I think it’s safe to say that no one has ever gone to their grave regretting having too much fun or fully enjoying their life.

Other than spending time with my wonderful husband and glorious son, as well as, my awesome friends, I spend my time on art. Art frees my spirit and allows me to enjoy my life. Give me some paint and a rock and I’m happy. Try it!

My whole life’s plan had changed in an instant. I was about to embark on the biggest fight of my life, I was entering a world of the unknown.


New Life, New Normal

Andrea Shelbourn

Diagnosis: Sporadic Medullary Thyroid Cancer
Initial Symptoms: Swollen lymph node
Treatment: Surgery, Radiotherapy
Special Focus: Advanced disease, Frequent visits, Social Support
Age Range: 40 to 49
Location: Berkshire, England

“It’s bad news I’m afraid…You have thyroid cancer.” Those were the words that came tumbling out of the consultant’s mouth. Strangely, it didn’t come as the massive shock you might imagine to this 41-year-old.

Almost 5 years previous, I had gone to the doctor’s with a swollen lymph node in my neck. On examination, he had decided it was fine, and he instructed me to “keep an eye on it”. I had mentioned it to several other doctors over the 4 plus years that followed, and all came to the same conclusion. “Nothing to worry about.” So, I didn’t. I carried on with my life in the bliss of ignorance.

Then in the July of 2014 my lump was joined by a friend, a new lump. I went to visit a new doctor who was very thorough indeed, he did countless blood tests, but couldn’t find anything wrong, so he decided to refer me to the hospital as he was all out of ideas! I met the first of many consultants. He too said it was nothing to worry about. The doctor and consultant did keep asking me about night sweats, weight loss and itching, I had none of these symptoms; in fact, I felt just fine! I had a biopsy and an ultrasound done and when I got home, I did what any doctor will tell you not to do, I started to google. Limited options for swollen lymph nodes, tends to be either cancer or infection, seeing as I’d had it 5 years, infection was unlikely so on googling including the night sweats, weight loss and itching, which I didn’t have, I decided I had non-Hodgkin’s lymphoma.

My reply to those immortal words “you have thyroid cancer” weren’t those of breaking down in tears, or getting angry or an outpouring of emotion in any way really, but instead I calmly replied, “Oh, I haven’t googled that!”. He told me it was very rare, and my treatment would take place in a specialist hospital in X, about an hour’s drive away and that was that. I walked out of the room with my husband Paul, hand in hand, in silence. I can’t put into words my feelings at that point, just numb.

Entering a world of the unknown

My whole life’s plan had changed in an instant. I was about to embark on the biggest fight of my life, I was entering a world of the unknown.

And I didn’t like it. 

When my two gorgeous boys came in from school, Ben, aged 14 at the time, and Thomas, aged 12, we told them straight away. We’ve always been a close-knit family unit, we’ve never had secrets, and everything has always been honest and open. They were unsurprisingly upset, and we all had a good cry. We decided to call the tumour Bernard, just seemed like a more lighthearted way to talk about this very serious matter. I think that for me, this was one of the few times I have cried (except actually whilst writing this! I’ve been blubbing the whole time whilst I’ve been typing this. I guess that proves it comes straight from the heart). You may be misled at this point to thinking I am naturally quite an unemotional person whereas in fact I’m the opposite. I’ve always liked a good cry. I never miss an opportunity! But somehow this situation was different, I almost felt like crying was like letting Bernard win and I certainly am not going down without a fight!

Thomas is very open with his thoughts and emotions and his first question was, “Are you going to die?” I replied that I didn’t intend on dying yet! But naturally, it has been a constant thought in my head, the possibilities of leaving my boys behind without a mummy and being denied the future I’d planned with Paul, all the things we were going to do and places we were going to visit as we grew old together. It just all seemed so unfair for all of us. I told my best friend via a text whilst still in the hospital. She isn’t a touchy-feely emotional person at all, but even she spent the afternoon crying. I decided after that to tell everyone by text, that way I didn’t have to witness the crying or despair in their faces. I did stipulate on every text I didn’t want pity or sympathy, as I’ve never got on well with it.

My doctor tried it once at the very beginning, I told him off! He’s never done it again. I need facts not fluffiness! My family and friends were all amazing. I was incredibly well supported and felt so loved and cared for. I think Paul has probably felt the most helpless in all this, he was going through this huge rollercoaster of emotion with me and yet he was forgotten about whilst I sat firmly in the limelight. Through all this, he has been my rock, I could never ask for anything more, he’s spent countless hours waiting whilst I’ve had scans and tests done, he never moans, just holds my hand and hugs me when it’s over. Our endless love for each other alone will get us through this. He has asked the question, “Why you?” many times; to that there is no answer other than, “Why not me?” My dearest mum endured ovarian cancer at 52 and breast cancer at 75. I’m sure she never asked that question. She just accepted the hand life had dealt her and battled against it. Likewise, my darling dad had a massive brain hemorrhage at 48. Next year, against all the odds they both will celebrate their 80th birthdays. My parents are my inspiration. I definitely come from a family of tough cookies.

I had a CT and an MRI scan and then went to see my new consultant in Oxford. He said it looked like it was all contained in my neck and hopefully they’d be able to remove it all and that would be that (If only!). I had my operation on the 23rd of January this year. Foolishly I’d googled it and wished I hadn’t! Thomas had asked me the morning before, how many people a year die under general anesthesia? I said google it and tell me after, when I’m not one of the statistics! Although he also said he wanted my thyroid and Bernard brought home in a jar! The operation went ok although the findings were worse than my scan had shown. I ended up having my jugular removed (always thought it is a vital part of a neck, but evidently not!). A full thyroidectomy and radical neck dissection, I had 30 lymph nodes removed of which 16 were cancerous and my laryngeal nerve was cut and re-stitched. I’m due to start radiotherapy very soon, but the cancer has unfortunately also appeared on my spine, so as I’m writing this, I’m waiting to see what the next move after radiotherapy in this very complex treatment game is.

Strength and support

I was very lucky to have stumbled across my fellow “meddies” on Facebook, Medullary being so rare. Finding out anything about it is a challenge, let alone actually meeting someone who has it. They answered so many questions that I didn’t even think of asking. It was a bit of a double edged sword though, one day I would read something really positive and I’d feel really upbeat, and then another day I’d read something much harder to take, like the passing of a fellow meddie, and I’d be catapulted into the pits of despair for a while.

This has certainly opened my eyes to what really matters. In life you just plod along getting on with things and then one day you realize you’re old and the children have grown up and you haven’t done all those things you were going to do. This has made me appreciate every single day with my amazing family.

So, for the moment at least, I’m living this new life. A new normal. Not the carefree one I’m used to. A cancer bubble if you like. A seemingly endless cycle of doctors’ appointments, blood tests and scans. Every hospital appointment is like a rollercoaster, jump on board the anxiety train up to the appointment, then, depending on the news, misery or elation after. I’ve endured things that a few years ago I would never have believed possible, like having my radiotherapy mask fitted.

I am a much stronger person than I ever imagined I could be. The doctor warned me of “dark days”. I think I’ve been lucky, as both Paul and I have had dark moments, but luckily not at the same time, and we have managed to snap each other out of it. At the end of the day, life’s too short to waste any moments worrying about something that you can’t change. I’ve heard the words, “You’re so brave” quite a bit. One of my fellow cancer survivors said it was because people think in your situation they would never cope. But they would. You have to. There is no other choice. In the face of adversity, you deal with whatever’s thrown at you. Cancer is not going to break me. Cancer is not going to beat me.

All I can say is, “F**k you cancer, you chose to mess with the wrong girl! I WILL BEAT YOU!”

As I’ve told my soul mates, my life should not be measured by a length of time or a “survival rate,” anyway. My life should be measured by the depth of my convictions, by my deeds, good or bad, by what difference I have made. In the end, that’s what matters.

Obsession with Uncertainty

Kerri Remmel

Diagnosis: Sporadic Medullary Thyroid Cancer, Stage IV
Initial Symptoms: None
Treatment: Surgery
Special Focus: Center of excellence, Dealing with uncertainty, Coping mentally
Age Range: 60 to 69
Location: Louisville, Kentucky

Medullary thyroid cancer captured my consciousness and has not let go since I was given the diagnosis three months ago.

I read scientific journal articles before surgery that used words like “recurs,” “incurable,” and “lung, bone and liver metastases.” I heard my MTC medical team at Hospital X say “microscopic mets,” read my abdominal CT scan results with “lesions concerning for . . .” and “plan to repeat imaging in six months.” I think I’m supposed to adjust to this and move on. But I’m not good with uncertainty. Until now I’ve only revealed my obsession with this uncertain incurable cancer to my two soul mates.

My “new normal” of hypoparathyroidism is annoying, to say the least. Since my total thyroidectomy two months ago I have a hoarse voice, occasional swallowing difficulty, tingling paresthesias that come and go, muscle weakness and spasms, and even the famous Chvostek’s sign (facial twitch), which I learned about in medical school but never thought I’d be the patient with it.

The Facebook support group of Meddies keeps me connected and unashamed of my obsession. I can check in each day with my new band of brothers and sisters, some of whom have lived with MTC for 20 years. I am connected with people who have MTC, and I have never even laid eyes on any of them. Reading their stories keeps me grounded. I am one of them. But I’ve got it easy compared to many, at least for now. I plan to meet many of them at the annual ThyCA conference in October.

I’m a new Meddie. Or am I? I wonder just how long I’ve had MTC? I had a biopsy without ultrasound guidance more than 15 years ago by an endocrinologist in her office. Results were negative, and I never thought about it again until my new PCP insisted on an ultrasound. She would not let me blow it off. I was grateful for her insistence. The ultrasound guided biopsy was performed at the University of Louisville with expertise and compassion. The nurse in radiology offered to hold my hand for support, and I took her up on it.

Choosing a center of excellence

But I decided to find an MTC Center of Excellence, strongly recommended by my wise 90-year-old mother, so I chose Hospital X. Every aspect of every event was played out with excellence there. And the team leader, Dr. X, was a phenomenon. I hung on to every syllable he uttered. I should know better, but with so much uncertainty built into the diagnosis, I needed someone to rely on who had seen a gazillion patients with this disease. He is it.

The endocrinologist assigned to me, Dr. Y, gave the “microscopic mets” news (based on calcitonin and CEA levels) with thoughtful compassion. He taught me more about how the disease spreads in some people and how they look at calcitonin doubling times for predicting tumor recurrence. And the hospital laboratory was unbelievable, with a huge waiting room full of people that turned over so quickly. In and out in 10 minutes. I must have been stuck 25 times while there for assessments, pre-op and post-op care, and never had a bruise on my arms. How does that happen? I’m either a bionic woman or they are that good.

I wonder what the survival rate is for T2N2MX? I guess it’s too early to stage.

None of us knows how our lives will play out. Or how long we have to live. As I’ve told my soul mates, my life should not be measured by a length of time or a “survival rate,” anyway. My life should be measured by the depth of my convictions, by my deeds, good or bad, by what difference I have made. In the end, that’s what matters.

Transforming cancer-consciousness into cancer-subconsciousness

Each person with cancer must learn her own approach to transforming cancer-consciousness into cancer-subconsciousness so she may “carefully capture the minutes of her life, and live them.” (Thank you, Teresa Fountain.) I’m not there yet. Cancer is still very much in the forefront. I want to make every moment count. Who doesn’t?

Cancer does give me a greater appreciation of moments in everyday life. I notice moments of kindness more than ever, and cherish them. I notice negativism more, and fiercely reject it rather than patiently wait for it to submerge.

Cancer brings out truth, too. My sons opened up to me post-op and revealed their feelings of love and of their acceptance of my life. My sister and soul mate, Carol, has ways of bringing out the best in people. Crazy how that is. It took getting cancer to allow the truth to be revealed.

I am so grateful my diagnosis came after my kids were grown. They’re in their twenties. I thank God that my genetics tests were negative for RET. What about my Meddie brothers and sisters who have young children? My heart aches for them.

I want MTC to stand down. I realize that it won’t disappear, but it needs to fade into subconsciousness. Maybe it will move into the background after the follow-up scans at six months post-op. Or maybe not. As I write, I feel a power over MTC. I am facing it head on, but I have no idea where I’m headed. I’ve always set goals, strategically mapped out plans, and worked hard to achieve them. MTC is the greatest challenge yet, because I can’t map out a solid plan yet.

So, at three months from diagnosis and two months from TT, I think about this cancer most of the time, but I’m okay. Not where I want to be, but grateful to have amazing love and support, a dynamite group of colleagues at work, a great medical team of experts at the Center of Excellence, and a new family of Meddies.

Writing this initial report has helped me label this stage of my cancer journey Obsession with Uncertainty.

To recover your life costs you in all the senses, and the reality is that I know that cancer will be by my side for the rest of my life as if it were my shadow. But I have decided not to be in the shade like him and I want to be the light that illuminates me with strength every day.

An Unexpected Visit

Yolanda Domingo Maté

Diagnosis: Sporadic Medullary Thyroid Cancer
Initial Symptoms: Swollen lymph node
Treatment: Surgery, Radiotherapy
Special Focus: Lack of provider MTC knowledge, Genetic testing, 2nd Opinion, Response from friends and family
Age Range: 30 to 39
Location: Zaragoza, Spain

Lessons learned

From everything I experienced, (which was a lot), in the end, like all circumstances in life, there are only two options left, or at least it is how I see it: sink or float with all your strength. That doesn’t mean that all along the way you don’t have your bad moments. It would be a lie if I said that I didn’t have them and I will have them, but it is something that must also be allowed because they are also necessary.

Cancer has taught me to know myself more, to discover strengths that I didn’t even know I had. To value the really important things and to know what I want and what I don’t want in my life. It has allowed me to make changes, with which I am now much happier than before, in short, it has taught me to live and see life in a different way.

I have also learned that at times like this, it’s when people around you surprise you, both for good and for bad. Because there are those who you know that they will always be by your side, and there are, without conditions, those who surprise you and give you small gestures that fill you with affection, calls, messages, and strength. There are also those who you don’t expect a lot from them, and nothing changes, and then there are those who hurt, those are people you expected to have by your side, and they just are not. They disappear at that moment in which they should have been by your side for many reasons. But that also teaches you.

On this journey, you meet new people, often wonderful people, willing to help you without conditions, you discover people going through the same thing as you, better or even worse, and from all of them, you learn something new. There are even people crossing your path that you feel you can help with your experience or your way of seeing things and it is very satisfying to be able to give what you have received before or would have liked to have received.

During all this time that cancer has accompanied me, the challenges have been hard, it’s like starting from scratch, it doesn’t let you go back to the way it was before. To recover your life costs you in all the senses, and the reality is that I know that cancer will be by my side for the rest of my life as if it were my shadow. But I have decided not to be in the shade like him and I want to be the light that illuminates me with strength every day. I stay with the teaching, with what I have learned, with the people who have accompanied me with their unconditional love, with all those wonderful people I have discovered, with my new and better life. So paradoxically, despite everything I have lived, I have something that gives thanks to this disease, it is said that everything, no matter how bad it is, you have to find the positive part, so this is what I’m trying to do.

Thanks to the entire American group for accepting me in this great family.