Rebekka Haefeli: People who smoke are usually aware that they are taking certain risks. The risk of lung cancer is higher, and the risk of oral cancer, for example cancer of the tongue, also increases through smoking. Barbara Fountain did not smoke and yet, at 32, she was diagnosed with tongue cancer.
Barbara Fountain: At that age, death is not something you normally think about. That has now completely changed for me.
Rebekka Haefeli: Barbara Fountain had just founded her own event company, had recently got engaged and was ready to really get started in life. The diagnosis of tongue cancer was a major turning point. The same is true for other young people, especially many young women, as Patrick Bergsma explains. He is an ear, nose and throat specialist at Inselspital in Bern and conducts research on this topic.
Patrick Bergsma: With oral cancer, a trend has been observed showing that in young people, especially young women, there has been an increase in this type of cancer. This is independent of the usual risk factors such as alcohol and tobacco use.
Rebekka Haefeli: In this episode of Wissen gegen Krebs, a podcast by the Swiss Cancer Research foundation, I am with Barbara Fountain visiting Dr. Patrick Bergsma. She has been living in England for many years and is currently on holiday in Switzerland, staying with her parents in the canton of Nidwalden, where she grew up. I am Rebekka Haefeli.
Rebekka Haefeli: Barbara Fountain was just over 30 when she received the diagnosis of tongue cancer at the end of 2018. It all started, as she thought at the time, quite harmlessly, with a little sore on her tongue that simply would not go away.
Barbara Fountain: I went to my dentist, who looked at it. He thought maybe one of my teeth was irritating it. He filed something down, sent me home and said I should come back in two weeks. I came back and he looked at it again and thought that something still was not right. Then this happened two or three more times. In the end he apologized a lot and said he was very sorry, but that he now had to send me to the hospital, just to be on the safe side, but not to worry, everything was probably fine.
Rebekka Haefeli: At the hospital in England they took a biopsy, a tissue sample. Barbara Fountain was not alarmed at all yet.
Barbara Fountain: During the biopsy, the person doing it even said that it was definitely not cancer. I have to say honestly, I was lying there and it was the first time I had heard the word cancer. I just thought, well, that is something too. Then I did not think about it anymore. It just hurt a lot.
Rebekka Haefeli: A few days later she went back to the hospital to discuss the result. She says six or seven doctors were waiting for her and her husband in the consultation room. That was when she already thought something was wrong. One doctor started speaking.
Barbara Fountain: Then he said it was good that I had come, because I had cancer. It was a huge shock for us, because I did not even realize that tongue cancer existed. Secondly, we were not expecting cancer. At 32, you just do not expect that.
Rebekka Haefeli: If you think of tongue cancer, if you have ever even heard of it, you probably think more of older men with risk factors like smoking or alcohol use. But in fact, more and more young people are affected, regardless of risk behaviour. This is being observed in Switzerland and in other countries too. In Switzerland, around 1,200 people each year develop oral cancer, which includes tongue cancer. That accounts for just under three percent of all cancer cases.
Patrick Bergsma: Of course, the frequency cannot be compared with lung cancer or breast cancer. Even so, there are almost half a million people worldwide who are diagnosed with oral cancer every year.
Rebekka Haefeli: For Dr. Patrick Bergsma, one thing is clear: the age at diagnosis plays a major role. The earlier in life you receive such a diagnosis, the more life-changing it is.
Patrick Bergsma: Simply because of the life expectancy you still have ahead of you. And of course you are right in the middle of life, in your career, in your family and so on. Then the impact is even worse. And when you then go through treatment, there are certain consequences. That speaking no longer works as well, that swallowing no longer works as well. But you are still at an age where you are in working life, where you have to function fully.
Rebekka Haefeli: Barbara Fountain sees it the same way, from her own experience.
Barbara Fountain: Thirty-two years old, newly engaged. I had my own company. Then cancer struck. First of all, the financial crisis was huge. From one day to the next I had no income anymore, because I was self-employed. We also wanted to buy a house, but because I had cancer, I could not get a mortgage. On top of that I had to leave my profession, because my body could no longer cope with it. Later I was also diagnosed with chronic fatigue syndrome. I basically had to rethink my whole life.
Rebekka Haefeli: Barbara Fountain underwent surgery for twelve hours.
Barbara Fountain: A quarter of my tongue was removed and reconstructed with tissue from my arm. And lymph nodes were removed as well.
Rebekka Haefeli: And although before the operation they told her that she would definitely have a speech impairment afterwards, fortunately everything turned out well again. What you can still see today is a scar on her neck and one on her left forearm. In consultation with the medical team, she decided not to have further treatment. This is often done to destroy any cancer cells that may still be there after surgery. Barbara Fountain had to think very carefully about deciding against radiation therapy, or radiotherapy as it is also called.
Barbara Fountain: I do not have children, I am still young, and I decided that up to now I had had a relatively good life and that I would take the risk of not having radiotherapy. But if it had been in two lymph nodes, they definitely would have done radiotherapy.
Rebekka Haefeli: She recovered well and remains cancer-free to this day. But she says that especially at the beginning she felt isolated and alone with her diagnosis. That is why she took the initiative and founded an international organization.
Barbara Fountain: We are called Young Tongues, the name says it all. We now have more than 1,000 patients worldwide in our community. On average, there are 20 posts and comments a day where people ask how to deal with this or that, or maybe just want to complain for a moment. Being able to reach out to people who understand, is also very helpful.
Rebekka Haefeli: Barbara Fountain says that really she only wanted to connect with others, but then realized how lucky she personally is. She can speak, eat and swallow without problems. A privilege that many others, including young patients, do not have. Radiation in particular can sometimes have dramatic consequences.
Barbara Fountain: For example, you can lose teeth. Or your gums can recede. You can also get problems with the lymphatic system in the neck area, so that it swells up. There can also be problems with the bone, where the bone gets smaller, wears down and then breaks. That means you cannot necessarily have dental implants. Surgery is actually the easiest part. It is more the radiation and other therapies that cause more damage.
Rebekka Haefeli: Why are more and more young non-smokers worldwide developing oral cancer? That is exactly what ear, nose and throat specialist Patrick Bergsma who works as a senior physician at Inselspital Bern, wants to understand better. In 2022 he travelled to Australia with a research fellowship and conducted research in Sydney at a renowned institute. His fellowship was funded by the Swiss Cancer Research foundation. Patrick Bergsma explains that oral cancer includes a number of different cancer types.
Patrick Bergsma: This includes the tongue, the floor of the mouth, the hard palate and the entire mucosa in front of the teeth and the gums.
Rebekka Haefeli: If it can be operated on, that is what they do, says Patrick Bergsma.
Patrick Bergsma: Afterwards, they decide based on the size of the tumor, how deeply it grows into the tissue and a few other factors that can be identified under the microscope. And of course also whether lymph node metastases are present and how many. Based on these factors, they decide whether radiation is needed or even a combination of radiation and systemic therapy.
Rebekka Haefeli: Systemic therapy is treatment in which the active drugs are distributed throughout the body in order to reach all tumor cells and also metastases. This includes chemotherapy. During his two-year research stay in Australia, Patrick Bergsma worked on a specific project. As part of this project, he mainly investigated tumor tissue from younger people with oral cancer.
Patrick Bergsma: When patients were operated on, part of the tumor tissue was removed and used for research. We then looked at all the genetic material, the entire DNA. We looked at which mutations, in other words genetic changes, were present. Secondly, we created a tumor model from this tumor tissue.
Rebekka Haefeli: From the cut-out tumor tissue, cells are taken, then grown and multiplied. In the lab, certain drugs can be tested on these models.) And the characteristics of the tumor tissue from younger patients were examined very precisely.
Patrick Bergsma: What we saw in many younger patients, especially women, although there were also men, was that the tumor stroma was more densely packed. You have to imagine that a tumor is not just cancer cells side by side, but that they are embedded in a scaffold. And what we also saw was that in patients who had a denser scaffold, and more of these fibres, the tumor came back more quickly after treatment and they had worse survival.
Rebekka Haefeli: One drug produced promising results. The drug affected the connective tissue in the tumors. In experiments with mice, this led to the tumors responding more sensitively to treatment.
Patrick Bergsma: The theory behind it is basically that if the scaffold is very tightly packed and contracts very strongly, then therapies, meaning drug-based therapies, work less well. And there is also very little oxygen in the centre of the tumor. And we know that this is a main reason why radiation may not work well.
Rebekka Haefeli: This important approach is now being pursued further. And research on other projects is continuing around the world as well. Patrick Bergsma is back in Switzerland, but he says the research fellowship was incredibly important for him.
Patrick Bergsma: I got a completely different perspective on the whole thing. In the hospital you see many patients with carcinoma. And what it means for the patients, how treatment proceeds. But those two years were really a much closer zoom. I was able to look at the tumor cells under the microscope. I was able to see what direct effect certain drugs have on the cancer cells. That gives you a completely different feeling. In the hospital, you often see the individual stories, the individual patients. And in research, you look at it a bit more as the bigger picture.
Rebekka Haefeli: But there is still one question on my mind. So when should you go to the doctor with a little sore in the mouth, like the one Barbara Fountain had?
Patrick Bergsma: After all, from time to time everyone has something in their mouth. But usually, everything that is not malignant, or most of it, goes away again. But if something, even a wound, simply does not heal, then if in doubt it is worth having it checked and looked at.
Rebekka Haefeli: Barbara Fountain remains optimistic.About her own health, but also for everyone else who is affected. Research, she says, is making important progress.
Barbara Fountain: There are many new studies - new therapies, all kinds of chemotherapies and also immunotherapies. And what’s truly encouraging is that patients are living longer – some for one or even two years. And with a good quality of life.