Susan Oostdam had cervical cancer and made “De Tumor Tapes”
Imagine you are 31 years old, live in the heart of Amsterdam and you’re in love with the cutest guy in the city. You finally started working at your dream job and have more friends than time to spend with them. Life is finally looking up. Your greatest wish is to one day get a baby. And then you’re told after a pap smear that you have cervical cancer. That’s how the story of Susan Oostdam (31) and her boyfriend Lex Uiting (35) begins. They made it into a podcast show, “De Tumor Tapes” [The Tumor Tapes].
“De Tumor Tapes” is a personal and touching story about being seriously ill and what that does to you. To your relationship, and most of all your child wish. The podcast starts with the voicemail message Susan sent her boyfriend after she received the result of her pap smear: it’s bad news. The nightmare begins with impossible choices, a lot of insecurities, sadness and hospital visits. We spoke with Susan about this period of her life.
It’s been 11 months since the surgery. How are you doing?
“I’m okay. It no longer affects my life all the time and I can enjoy the things around me again. I was declared clean two weeks after my surgery, so then I was healthy again. Ever since I’ve been going for check-ups every three months and will continue to do so for the next five years. Four months ago, I got a pap smear for the first time during such a check-up. I was a little scared of that, because that’s how the nightmare started for me last year. Luckily, everything was calm and it looked good. Since then, I’ve dared to let go of it a bit and I no longer worry about it every day. Except for now of course, because now we’re broadcasting the podcast.”
Looking back to the beginning. Did you have symptoms that you realized in retrospect were symptoms of cervical cancer?
“Not really. I did get some bleeding twice during sex of which I thought ‘this isn’t great.’ But when I googled it, nothing came up. In addition, at the very end I had a somewhat dark discharge. But well, I had just turned 30, I know from that fact that my body is changing a little. So, I wasn’t really aware of any of those symptoms.”
(Do you want to read more about blood loss after sex and what could be the cause? Read this article)
You had the pap smear taken based on the invitation for the population screening for cervical cancer. Can you tell what happened next?
“It bled a lot after the pap smear was taken and the GP told me it looked really unsettled. A day later we were already in the hospital and entered an enormous medical mill: an MRI scan, blood values check, lung X-rays and new biopsies were taken. It took over two more weeks before I got the final results. In the meantime, Lex and I spent a long weekend at a very luxurious hotel. We wanted to stay in a bubble for as long as possible where no one knew what was going on yet. It felt like the last moment when people wouldn't look at me pitifully.”
And then you are diagnosed: cervical cancer. What kind of rollercoaster did you end up in?
“Suddenly, my whole world got turned upside down. At first my biggest concern was what I was going to do next weekend and then I had cancer. How do you tell your parents? So much went through my head and at the same time I just felt empty. At the same time, all sorts of things had to happen. An MRI was made and it showed that the tumor was smaller than two centimeters. That was really good news, because it meant I qualified for a vaginal surgery. An intense procedure, but one that made our future regarding our desire for children a little brighter. After that surgery, there is still a 60% chance of a healthy pregnancy, whilst that is only 25% for an abdominal surgery. We were very happy with that. However, during a follow-up check-up, the tumor suddenly turned out to be three centimeters, so the vaginal surgery option was no longer there. I hadn’t seen that coming at all, so it was a very intense moment for us. Suddenly we had to make a choice in how we were going to fight this tumor. But all of the options sounded impossible.”
What were the options?
“The first was a complete hysterectomy. I seriously considered taking out the bloody thing completely, because there was something in there that shouldn’t be there and it had to go. But yeah, my emotions were definitely taking over at the time, so I wanted to look at the other two options as well. The second option was chemotherapy treatment. A tough course of chemo, that would hopefully make sure that the tumor would shrink below the two centimeters. In this case, vaginal surgery should be possible again. But then we had to go through an IVF process beforehand, because there was a high chance that the chemo would cause me to go into perimenopause. The third option was an abdominal surgery called Trachelectomy. That’s the one I chose eventually. It’s a procedure in which you are opened from just below your navel to your pubic bone. And from there they will look to see if your lymph nodes are clean. If they are clean, they will remove the cervix and the upper part of the vagina to check if that part of the vagina is clean. If it isn’t, you’ll still wake up without a uterus.”
How do you make such an impossible choice?
“It’s absolutely ridiculous of course. They aren’t really options at all. But the thing has to go, and so you must choose something. I had 5 days to choose. Luckily, Lex and I are in a steady relationship and we had spoken about our child wish often, so we knew we had to go for that. That’s why we couldn’t do the radical hysterectomy. But then you have to start weighing the chemo against the extra percentage chance of a successful pregnancy. I found that really difficult, because the chemo would make me an actual patient and I’d be ill for much longer. And if the chemo increased the chance of getting pregnant with a 100%, that would be worth it, but we didn’t get that certainty. We talked to a lot of people, and everyone had a different opinion. Eventually we called a friend of ours, an oncologist, who could tell us what chemo actually does to you. That’s why we chose the trachelectomy eventually. I honestly hoped that I’d feel relieved after making the decision, but that wasn’t the case at all.”
It sounds like an intense surgery.
“It was, but I wasn’t thinking about the surgery at all. All I could think about was the tumor, the thing had to go. I was 30, athletic, felt good about myself, and I thought ‘Oh, I’ll just go and do that, easy.’ In reality it wasn’t easy at all, of course. It was a really intense surgery where all my abdominal muscles were cut in half. My bladder runs all the way through there, so that was affected as well. I had to learn how to pee again, Lex had to change my catheter. We went deep.”
How long did you have to rehab?
“They say recovery for this surgery takes about six weeks and in my case that was about right. I couldn’t do much in the beginning. My abdominal muscles were gone, so I had to relearn everything. In the meantime, Lex had gotten a chance at RTL Boulevard - he’s a presenter - and he was working there. Meanwhile he was caring for me full time. It was a tough period. When I started to get a little better and I became myself again, he fell apart. He finally got the space to feel and think: ‘Jeez, what actually happened?’”
Did you learn things about yourself during this period?
“When in life do you get six months for self-reflection? Obviously, I wasn’t thinking about that at first, but after a little while I thought: ‘This came onto my path, it’s horrible and I wish it hadn’t happened, but what can I do with it? Who am I and what makes me happy?’ Since then, we’ve moved, we have a podcast, and I’m starting at my new job. The podcast was my way of turning my cancer around, of being able to turn the severity of my condition into a social issue.”
And that last thing definitely worked out, because "De Tumor Tapes" are really stirring the emotions, it turns out.
“It was really scary to be so outwardly vulnerable, but it was more than worth it. Our intention was: ‘Even if we only get one woman to see a doctor, it was worth the trouble.’ Now we are even getting reports from GP’s that they are training people to do pap smears, because they just can’t handle the demand. It’s beautiful and special and necessary, the numbers show. 44% of all women who are called, never have the pap smear done at all. I think that’s shocking, because it could save your life. For me, it could’ve ended much worse if I hadn’t done it.”
A lot of people are wondering how you were capable of making the recordings during such an intense period of your life.
“We didn’t make the recordings with the intent of making a podcast with them. From the moment we were sitting in the hospital, there were just so many emotions. It was really nice to record all of the conversations, it gave us peace. Then we told each other: ‘Shall we record some fragments together.’ And I started recording diary fragments. With the idea of ‘you don’t know what this will bring us.’ At least this way, we have a nice document for ourselves. Whatever the future might bring us. It wasn’t until much later that the idea came to us to make it into a podcast.”
The chance for a natural pregnancy is small, how do you deal with that?
“I actually spoke about this a lot with a social worker, otherwise it became too big and too much for me. So now I’m just taking it step by step. I know that the chance is small, and if I think about it, I’ll cry. But there is a chance and either it does happen or it doesn’t. That’s simply the way I think about it now. Episode 6 is about our child wish, and we’re going to make this episode somewhere in the future. We want to talk about the consequences this form of cancer brings with it. But it could also be the case that we say that we are pregnant and so we have succeeded. Only time will tell.”
Do you want to know more about HPV, getting a pap smear and what the different pap results mean? Read our extensive article about it here.
Editor's note: Early 2024 Suzan and Lex informed us that they are expecting their first baby.
Editor’s note: Starting at age 30, you will receive a call for a pap smear as part of the population screening for cervical cancer. It is not mandatory to take part in this, but we do think it is important that people do. Are you afraid of having a pap smear now? Know that you can request an at-home test kit with the RIVM to make the pap smear yourself. Hopefully that makes a difference! But most of all, just do it and take yourself seriously! And do you have any symptoms (even when you’re younger than 30)? Please set up an appointment with your GP to get checked out.
