Thomas Molgaard survived larynx cancer | permanent neck stoma | laryngectomy | sarcoma

8 hours ago

9 min read

DESCRIPTION

In 2012, Thomas Molgaard had a difficult time breathing and swallowing. A polyp, the size of a “second tongue” in his mouth, was discovered and removed. Doctors said the polyp was benign. In 2018, a second polyp materialized, again was removed and again determined to be benign. But in 2023, there was a third polyp returned and was diagnosed as cancerous. Doctors said Thomas would have to undergo a laryngectomy, the removal of his larynx. Going forward, he would breathe with a neck stoma and speak with a voice prosthesis, activated with the push of a button. Thomas says breathing, speaking and eating are more difficult, but he has become acclimated to his new way of life.

The third polyp in Thomas’s mouth was 8cm long and 2cm wide. It was removed with a robot and it first, doctors thought it was benign, like the others; but in January 2024, further tests indicated it was cancerous.

The challenge of treating rare cancers can be increased by a lack of availability of care teams; however, Thomas said the healthcare in his native Denmark is outstanding, and he felt confident about his care team.

Thomas said that radiation therapy is used on most diagnoses of the various types of throat cancer; but doctors feared the cancer would metastasize quickly, which they said ruled out radiation. Instead, they said they would have to remove his larynx, which would forever alter how Thomas went about speaking. The procedure would also change the way he inhaled and exhaled.

He was fitted for a permanent neck stoma, inserted through a hole in his airway. That would enable Thomas to breathe. Then he was given a voice prosthesis in his neck. When he pushed a button, air would be supplied from his lung, allowing him to make a sound.

He said there is such a thing as a hands-free voice prosthesis, but it irritates his skin so much that such a device is not an option.

Thomas used to cycle and used to run. Because of the vigorous breathing required for cardio exercise, much of his exercise is spent hiking. He still does a little running because he doesn’t want cancer to dictate his day-to-day life.

The stoma does not affect consumption of liquid, but there are certain foods that are difficult to eat, including bread and meat.

Thomas has established a website to help others needing laryngectomy.

Additional Resources:

Thomas’s Website: STOMAS

(English): https://stomasguide.com

(Danish): https://stomas.dk

Community & App: https://app.stomas.dk

TRANSCRIPT

Bruce Morton: Greetings, this is the @CancerInterviews podcast, and I am your host, prostate cancer survivor Bruce Morton. Our guest on this episode had to undergo a total laryngectomy, the removal of his larynx. Thomas Molgaard of Esjberg, Denmark, now must breath through a permanent neck stoma and speak using a voice prosthesis. Not only does he have quite a story to tell, but Thomas works hard to help others with a similar predicament. Now, let’s hear that story, and Thomas, welkommen til, welcome to Cancer Interviews.

Thomas Molgaard: Thank you for giving me this opportunity.

BM: Thomas, it is our custom to learn a bit about our guests and their lives away from cancer before we hear about their cancer journey. So, if you would, briefly tell us about where you from, what you have done for work and what you do for fun.

TM: Yes, I live in Esjberg, Denmark and I work as a machine carpenter. In my spare time I like to go hiking with my wife and my four kids.

BM: For each of us diagnosed with cancer, there was that point in time when we noticed something unusual with our health and that started us down a path leading to a cancer diagnosis. That said, in your case, when did you initially conclude something was wrong with your health, and what was wrong?

TM: I noticed that I had problems swallowing my food. I had problems with my breathing. Then one day in 2012, I got a polyp in my mouth, and it looked like an extra tongue. I went to the ear, nose and throat doctor. He sent me to the hospital where they removed the polyp and it was benign. Things were okay, but in 2018, the polyp came back and the second time it was benign as well. Then in 2023, I experienced the same difficulty with my lack of breathing and problems swallowing my food and I was sure the polyp had come back. It was 8cm long and 2cm in diameter. They removed it a third time. This time they were using a robot, and they told me it looked benign again, but it wasn’t. There was cancer in it.

BM: These were polyps that were removed and this had happened three times, but when did your care team tell you that you had cancer?

TM: All along, they had told me that it looked benign, but after that third time I was in the hospital and sat in a room with a doctor. He looked at me in a strange way, and this time he told me there was cancer in the polyp.

BM: By the way, we hope you will take time to like and subscribe to our channel. And if you hit the bell icon, you will be notified any time we post an interview. We would also like to remind you that on Cancer Interviews, we are not a source of medical advice. If you seek medical advice, please consult a licensed health care professional.

As you watch, as you listen, we would like to hear from you. We would like to hear where you are watching from, as well as your thoughts on Thomas’s story.

Now let’s get to your story, Thomas. You had gotten your diagnosis. In terms of treatment, what was next?

TM: Usually, you get radiation when you have throat cancer, but they were sure that it was expanding quickly, so they went straight to the operation, to the total laryngectomy. I was told on January 5, 2024 that I had cancer. I went to the hospital in Copenhagen, our capital, where they told me on January 19, that they would have to remove my larynx and my voice box. On January 30, they removed it.

BM: From an emotional standpoint, from a mental standpoint, how difficult was it to grasp that something we take for granted, the ability to speak, was going to be compromised for the rest of your life?

TM: I didn’t emotionally understand it at first. You could say eleven days to adjust to such devastating news, but I think if you had a year to prepare, it wouldn’t help. I don’t think it is possible to be prepared for how your life is going to be turned upside down.

BM: Now, I want to ask you a two-part question, pertaining to your breathing and your speaking, the breathing first. To breath, you had a permanent neck stoma inserted. How difficult is it to breath?

TM: It’s a lot more difficult to breathe now than it was before. You can use your mouth and your nose to control your breathing. I cannot do that now. My airway is directly from the lung and the neck.

BM: When exercises that involves more vigorous breathing. Are you able to do that?

TM: It is not easy. I have been very fond of cycling and running and it is so hard to do those things. That’s why I started hiking because it is easier to perform that discipline. I am also running a little bit. That’s mostly because I am a little stubborn and I don’t want that cancer to remove that part of my life. Yes, it is hard to breathe during exercise, and I don’t do it as often as I would like to.

BM: Now, you speak through a voice prosthesis. What the procedure like when it was initially installed?

TM: They made a hole between my airway and that is where they put the prosthesis. When I press the button, I can press the air from my lungs and to my mouth and that way I can make a sound.

BM: Given your having to press a button to be able to speak, did it take some time to get used to the process of having to use your hands whenever you speak?

TM: Yeah, that was a whole new situation. It is possible to have a hands-free prosthesis, which would enable one to speak without touching the button; but my skin is very red and irritated, and using the hands-free button is not that good for the skin, so I don’t use it.

BM: We had mentioned your airway, so we talked about breathing, we talked about speaking, but what about eating and drinking?

TM: It affects it in a bad way. For me to make a sound, they narrow the airway and I can have a little trouble eating and swallowing, especially with things like bread, but drinking is fine. However, if the prosthesis is leaking, then the fluid goes down into my lungs, and I will cough a lot.

BM: You have been in this new routine for years that has affected how you breathe, speak and eat. Would you say that now, after a period of years, that you have acclimated yourself to all the challenges that come with a neck stoma and a voice prosthesis?

TM: Yes, I think I have gotten used to all this new way of living and I feel that body has also adjusted to it and my body is working now. That was difficult in the start, where it was both physically and mentally, concerning the new way of living.

BM: I want to go back to the time when you were diagnosed and treated. Larnyx cancer is a rare cancer and as we have learned from interviews with those diagnosed with rare cancers, it is not always easy to find a competent care team. When you were diagnosed, were you were comfortable with the team that would treat your cancer?

TM: Yes. Luckily, I live in Denmark where the health system is very good, so it was not a problem for me, but it was a problem finding information about this cancer. My type of larynx cancer is rare because my cancer is sarcoma cancer, which is a cancer in the soft tissue. In Denmark, there are six million people, and I know of only one other person in the entire with my type of cancer, so that is two out of six million. It is difficult to have information because there aren’t many who know anything about it.

BM: We are about to wrap up, Thomas, but at the top, we had mentioned that in addition to your being a survivor, you seek to help others diagnosed with larynx cancer. Tell us about what you do.

TM: I have tried to gather a lot of information about the cancer, and take information from my own experience, so those diagnosed with my cancer can seek and find information on it. This is on a website and on the site we give people diagnosed with this cancer a chance to connect with others who have been diagnosed with it. The networking is very important for me, as I also work as a consultant. I go out and visit other patients before they are treated and tell them what is involved with a laryngectomy, and that life can be good afterwards.

BM: Excellent, and we will list the appropriate links in our Description and Show Notes below, so they can avail themselves of our site if they need it. Thomas, that’s a tremendous story you have shared. You have overcome a lot and it seems like you are making the most out of a number of challenges that have been thrown your way, which should be a source of inspiration for anyone on a cancer journey regarding of the type of cancer with which they have been diagnosed. So, Thomas Molgaard, thanks very much for being with us on Cancer Interviews.

TM: Thank you, Bruce.

BM: And, tak, which is Danish for thank you. We want to remind you that you or a loved one are on a cancer journey, you are not alone. There are individuals like Thomas Molgaard who have information and inspiration that can ease the cancer journey. So, until next time, we’ll see you on down the road.

Additional Resources:

Thomas’s Website: STOMAS

(English): https://stomasguide.com

(Danish): https://stomas.dk

Community & App: https://app.stomas.dk

SHOW NOTES

TITLE: Thomas Molgaard, Larynx Cancer Survivor – Esjberg, Denmark

Additional Resources:

Thomas’ Website: STOMAS https://www.stomasguide.com

STOMAS Community & App https://www.app.stomas.dk

Time Stamps:

02:59 In 2012, Thomas said he had trouble swallowing and breathing because of a polyp in his mouth.