Description

Read about Janet, who was diagnosed with tongue cancer in 2019. Janet works with Servier's patient engagement program. She tells us about her experience with the disease and her views about the value of incorporate patients' insights in medical research. 

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Transcription

• Tom

  Hello and welcome to Paris Saclay for the first episode of The Patient's Side of the Story. This series of podcasts is the result of an unprecedented collaboration between the Servier Group and members of the Servier Saclay Research and Development Patient Board. For several months, this board has been working with the Servier teams to try to better integrate patients'perspectives within the new Servier R&D Institute at Paris Saclay. And this series of podcasts is one of the key projects in this collaboration with patients have been kind enough to share their personal experiences with us. I therefore invite you to discover now the testimony of Janet, who was diagnosed in 2019 with tongue cancer and underwent 11 hours of surgery, during which a portion of her tongue was removed. She now works with Servier's Patient Engagement Program. Janet, welcome to this edition, and thank you very much for taking the time to talk to us.

• Janet

  Thanks for inviting me, Tom.

• Tom

  Please could you start by just telling us a bit about yourself?

• Janet

  Okay, I'm 72 years old. I'm now retired. And I've had a very varied career from having been a pilot to working in broadcasting, film, then video. I helped develop high definition television in the States because I was living in Canada. I then came over with Sony to help develop high definition in Europe. I then... I started my own business and was doing production as well as training broadcasters in HD. And then I became a lecturer when I went back to university in 2008 because I was passionate about the environment and wanted to look at a way of telling broadcasters "you are having an impact on the environment". So I had more credibility to do that. And then for my last five years, I was a broadcaster. I had TV shows in Amsterdam and Las Vegas, and looking at the environmental impact of broadcasting and general technology. So it was a bit of a shock when obviously, I got diagnosed.

• Tom

  Thanks for that, Janet. So let's talk about the chain of events which led to your diagnosis. How did you become aware that there was a health issue to begin with?

• Janet

  In 2012, I had had a little patch on my tongue. They had a look at it, took a biopsy, and it was nothing. And then in 2018, I saw a patch again on my tongue. And it was only about, oh, not even two millimetres, but it wasn't going away. It wasn't painful or anything. But I had recurring shingles, which didn't make sense. And part of me was saying, because I've always been very conscious of my body, part of me was saying, my body is fighting something if I'm constantly having this viral infection. So I went to GP, in fact, I ended up going to three of them and got told, oh, it's just your tongue is rubbing against a tooth. And this went on for three months. Well, by the December, we're talking 2018, by December 2018, I said, no, I want to see a consultant. I got very upset when a month later I got to see a consultant and he turned around and said, oh, it's just your tooth rubbing on your tongue. Why don't you go and get your teeth filed down at your dentist? Well, when I went to my dentist, he said, there's nothing to file. Your teeth are as smooth as anything. We're now the January and then the pain started. I couldn't cough or it hurt to cough, it hurt to yawn, it hurt to swallow and it got to the point I just couldn't eat because it was so painful and the tumour from a visual point of view was still very very small. They did a biopsy in the February and in the March I found that I had stage two aggressive.

• Tom

  And that must have come as a great shock and it took lots of persistence on your part to get an accurate diagnosis. How did you react when you finally got an accurate diagnosis?

• Janet

  I was very frustrated. And I even think now, Tom, that had I had the biopsy very early on, I may not have had the 11-hour surgery that I ended up having. I was angry, but when I actually found out, I was in Sri Lanka after the biopsy, and I got a message that I needed to have a CAT scan. My girlfriend I was with at the time had been a radiologist, and she said to me, "oh, they only do a CAT scan if they're looking for secondaries". And I thought, oh my goodness, that means I've got cancer. So I came back, went straight to the raw box, and said, I need to see somebody. And they said to me, oh, didn't you know? Have you got somebody with you? Well, I was on my own, and I was told I had stage 2 aggressive. And I remember going back home on the train, just crying my eyes out, because I think when you're diagnosed with cancer, you go through, "Oh my goodness, am I dying? what am I going to do? What's going to happen to my life?" You go through a whole load of negative thoughts.

• Tom

  And I can imagine really hard to stay positive at a time like that. When you met with your surgeon, what sorts of options were you given regarding treatment? Did you have to make choices, for example, between one treatment protocol and another?

• Janet

  I had a brilliant surgeon at the Churchill Hospital in Oxford, and he sat me down and he said, "What is most important to you?" and I said, oh, I get emotional here, I said, "I want to be able to talk, because lecturing, being a pilot, being a broadcaster, if suddenly you can't talk, it's quite devastating, I should imagine", anyway, he said to me, "okay, well, these are the options", I could have had radiotherapy, just straight radiotherapy, I could have had a dye put into my lymph nodes and had radiotherapy to see if it had gone into my lymph nodes as well as my tongue and the other option was to cut it out and he said "Go home think about it" and I didn't even go home think about it I thought "I want this demon out" but you go through incredible ups and downs from "I'm going to kick this" to, "oh my goodness, I'm dying". So the emotional rollercoaster for that month before the surgery was awful. Fortunately, I've got good friends but you do things like start checking that your will is okay and all this sort of thing so it's very sad.

• Tom

  Yeah, an emotional roller coaster as you said Janet. It's a huge temptation these days given the online resources to try and diagnose yourself and work out your own prognosis. Lots of doctors advise against what they call google diagnosis but did you find yourself doing that ?

• Janet

  I did. But having been a university lecturer, I know how to sift the non-peer reviewed and the peer-reviewed articles. So I'm pretty good, I think, at being able to see what the correct thing is that I'm looking for and not look at some strange remedy that somebody's offering or somebody's saying, yes, you know, so many people are going to die. But I was not a smoker. I'd have the odd social glass of rosé. They're certainly not drinking spirits or drinking every day, which is one of the reasons they say sometimes tongue cancer happens. Or it's the HPV virus, which is the sexually transmitted virus. But India and Sri Lanka have some of the highest numbers of tongue cancer, and it's due to the fact that they chew tobacco a lot.

• Tom

  Going back to you and how you got through the very difficult times you told us about, what sorts of things did you do at this stage to give yourself a bit of a lift and a boost to morale?

• Janet

  Went hiking with friends, made sure I had some friends around me, exercised like crazy. And it was quite interesting because my surgeon actually said to me, that being? well I was what 68 at the time? he said to do the operation on somebody in their late 60s or older when it's an 11 hour operation can be quite risky for your heart and I already had atrial fibrillation which is a sort of heart murmur but he said to me that having exercised and been so fit it was the best thing I could ever have done because when you do the exercise, you put endorphins in your body, which are feel-good hormones, and you feel better. I mean, a lot of people who are stressed find that exercise helps de-stress them.

• Tom

  So, Janet, you found ways of keeping yourself productive and feeling useful during the pre-op and recovery phases, notably joining support groups. You did an online video journal. And looking back on it, what was the value of all of that?

• Janet

  Right. I joined a support group called "Heads Together", three months after my surgery and I didn't know what to expect but I knew there were other patients, only patients that had had surgery or radiotherapy or chemo and were recovering and I actually found it very good in two ways. One, it made me feel better because I was doing a lot better than some of the other people, but it also made me feel better because I was able to say to some of the people, look, I found doing this helps. People who were struggling, I could give my opinion and my advice as to what had worked for me, why didn't they try it? So that worked really well. But I decided when I was diagnosed, I had to turn this negative thing of, "oh my goodness, I've got cancer !", into something positive. And a lot of people who have cancer, they feel quite alone, even to the point that some, and I had this happen with two friends as well. Friends sometimes go away. They don't know how to deal with you if you have cancer. So I thought there may be a lot of lonely people out there trying to deal with this on their own. So I did video diaries for the month beforehand, explaining the emotional crashes that I went through, what I was doing. And then I think I've actually got one diary of me in the hospital. And then afterwards, with my recovery, my YouTube channel has exercises on it. And I've got subscribers now from all over the world because in many countries, Tom, there is no support post-surgery, and that is so sad. So you find people, you know, they can't eat properly, so they stop going to restaurants. I found that I would start doing things like, "Okay, I go to a restaurant, but I can't eat that. What can you substitute that with?" And most restaurants, I've had a couple who've said, I'm not doing anything special for you, but most restaurants are delighted to try and make something that you can eat. The most popular of my videos is the tongue exercises. So you're going to be 15 minutes of looking at my mouth, opening and closing and doing things with the tongue. But there was nothing online. So I think at the moment I've got about 3,500 views of the tongue exercises.

• Tom

  Janet, it sounds as though you kept yourself extremely busy during your diagnosis and treatment phases. And on top of that, and on top of what you've just told us, you become a member of the Servier Patient Board and you work on patient engagement. What does that involve, actually?

• Janet

  I'm on with two boards. And what happens is Servier decided that they wanted patients to be part of their decision-making process. So if you take, for example... a clinical trial where they're testing drugs on humans before they're allowed to go out into the general public. Working, for example, as to is the writing, the way they're explaining to a patient how something is going to happen, is it clear? What might I do as a patient if I was on that clinical trial? I've been helping them with what they're going to have in the new research and development facility. We're doing a podcast that is going to be part of the new facility. So it's a variety. I've been invited to give a lecture on my cancer experience to doctors, researchers, data center people in Paris. And I felt by being part of the board. that I could give back a little bit for future patients.

• Tom

  And just tell us, who is a typical member of the board?

• Janet

  Everyone on the board has some sort of disease. It might be cerebral palsy, cancer, Parkinson's, and therefore they have first-hand knowledge on what that disease is causing them, how it's changing their lifestyle. how it's changing their mental approach, how it changes their work life. There are a whole load of different things depending on the disease and the stages of the disease. So each person, I think, wants to give back to help future patients and also make sure that the pharmaceutical company, Servier, is really taking on board our views of things.

• Tom

  By being involved in this patient engagement program, and as you put it, by giving something back, has this type of activity helped you?

• Janet

  Yes, in two ways, giving something back, but also I mentioned I'm retired. And when you retire, yes, you can have more holidays and do this sort of thing. But I consider what I do at Servier is brain food. It's things that make me think. I'm going to be helping with one group shortly on writing a paper that will be presented at conferences. That sort of thing I find very useful for my own sanity, to feel I'm contributing to society.

• Tom

  So lots of changes in your life this last few years. Just tell us, how are you doing today?

• Janet

  Well, I remember my surgeon telling me, "You're going to have to find a new normal". And I didn't know what that was. But I'm well. I've got... a routine for doing exercises. I'm now eating much better but of course I've gone through having months and months of puree because of trying to eat with a flap. I was eating incorrectly on my right side only. That put my jaw out. I still can't spit, which is a funny thing. I mentioned that to my surgeon. He said, "What do you mean you can't spit? " I said, "Well, you try feeling the muscles for spitting". And he said, "Oh, I can see now why you can't". But essentially I'm normal. I mean, I'm just so delighted that I can talk properly because unfortunately a lot of tongue cancer patients aren't able to talk properly or talk as they used to. But a lot of my friends say my voice is pretty much the same as it was before the surgery.

• Tom

  That's great to hear, Janet. And just before we sign off, I wonder if you could share a few words of wisdom from your own experiences, which someone listening to might be able to relate to. What's your parting advice?

• Janet

  There isn't just one thing, there's probably three things. One, keep your friends around you. Two, eat very well. Make sure your body's in good condition. And three, exercise. because that way you're going to have a healthy body.

• Tom

  Well, that sounds like really valuable advice. Thank you very much indeed. That's all we've got time for. Thank you, Janet, for being so generous with your time and for sharing those very personal experiences. I'm sure your testimony will be both insightful and inspirational to people who are listening. We wish you all the very best.

• Janet

  Thank you, Tom.

• Tom

  And thanks to you for listening. We hope to have you with us again very soon for another edition of The Patient's Side of the Story. Patient's Side of the Story. Stories by Servier Saclay Patient Board.