'I'm just a quiet, reserved person...'
When her mother died after routine surgery, Antoinette Barbee turned her grief into activism. This midwife from Northern Ireland has brought about institutional change that will save many, many lives. But at what cost to herself? Enda Guinan finds out.
The first episode in the Sarcoma UK podcast featuring interviews with people in unenviable positions.
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Music performed by Joe Chester. Music for a Short Film (Chester), Streets of Derry (trad.)
Enda Guinan (presenter) [00:00:01] They say courage is found in unlikely places. Well, JRR Tolkien said that. I met a woman however whose courage took her to some unlikely places. Antoinette Barbee is a midwife and a mother in Northern Ireland. She describes herself as a 'quiet, ordinary person'. But in the last three years she's achieved some remarkable change in the world that will save lives. It began with a tragedy. With the death of her mother when a common form of surgery called morcellation resulted in sarcoma cancer spreading through her abdomen. Perhaps fuelled by grief and a sense of justice, Antoinette began a gruelling journey to make women aware of the risks of this procedure.
Enda [00:01:03] So that was the Radio 1 Big Weekend here..? Always to my ears it sounds very awkward... Listening to UK journalists and so on saying Derry/ Londonderry. It always sounds very like a big mouthful. I saw that someone recently said 'I don't like any of that stuff, I'd prefer to just call it Legenderry!
Antoinette Barbee [00:01:28] That's right! Yes I know, I like that one too...!
Enda [00:01:32] This is Derry or Londonderry in County Derry, Northern Ireland. It's Northern Ireland's second city with a population of about 90,000 and growing. Perhaps it's not a big surprise to learn that the city has been the fastest growing urban centre in Northern Ireland over the past 30 years and it's still growing.
Enda [00:01:52] You can hear the sounds of construction all around here and you don't have to travel far to see plenty of tourists enjoying some of the most beautiful scenery in Ireland. The Derry / Londonderry name is a reflection of the demographics here. It's a Catholic majority area, just a few miles to the border with the Republic of Ireland. Londonderry is the legal name however, gained when it's received the Royal Charter from King James I back in the 17th century. After the Civil Rights Movement of the 1970s the conflicts that people called the Troubles actually began in Derry and the city was heavily militarized for the following three decades. But if it started here, you could also say that it finished here as the area had much less violence than other parts of Northern Ireland well before the eventual signing of the Belfast or Good Friday Agreement back in 1998.
Enda [00:02:46] Okay, so where are we now?
Antoinette [00:02:48] We're in a place called Ebrington Square and this is, it's in the Waterside in Derry and it's at the end of the Peace Bridge. A few years ago they developed the Peace Bridge leading from the Cityside over to the Waterside. During the Troubles they used to be a lot of conflict between the two areas. The Cityside was mainly the Catholic area and most of the Protestants tended to all live on the Waterside and a few years ago they developed the Peace Bridge just to connect the two areas. So we're just at Ebrington Square now at the other side. There was loads of plans to develop shops and coffee shops...
Enda [00:03:32] My guide today is Antoinette Barbee. Too young to have experience the troubles first hand, nevertheless she's experienced a conflict of her own these past couple of years.
Antoinette [00:03:43] Hello, my name's Antoinette Barbie. I live in Northern Ireland and I'm a midwife here and I just want to share with you just a wee story about my mum and the journey that she had with sarcoma. And I'm... [fades].
Enda [00:04:00] Yeah, just talk us through, you were saying about the family being very close knit.
Antoinette [00:04:06] Very very close family. We saw Mum everyday and she looked after...not only did she look after my kids when I worked but she also looked after my brother's two kids. And if there was a day that we didn't see her, she would have been raging with us for not stopping by! She's having withdrawal symptoms from the kids and she would say she needed her wee fix! So ... she was just crazy about them...
Enda [00:04:38] And she was around for your first three children - she was the babysitter.
Antoinette [00:04:42] That's right. She looked after the first three children; my first three, Matthew, Owen and Grace and looked after them right up until I went off on maternity leave just a few weeks before this photograph was taken. And then that's when we when we found out that Mum's cancer had returned and that the doctor told us that it was probably only going to be a few weeks to a few months.
Antoinette [00:05:07] At that stage mum looked so well! I mean, we couldn't believe it. If you look at these family photographs, she really looked so well. It was so hard to believe. But the doctors were right, she did, she only got six months from [when] that photograph was taken. She developed a clot in her leg and she never really after that... there was just seemed to be one side effect after another. She never really got a chance with the chemo to be honest, it was always just one setback after another. So she went downhill quite quickly.
Antoinette [00:05:37] Mum had rang me up one evening to say that she'd started bleeding vaginally and she just thought it was just her period back again. And I said you know being a midwife and being a nurse, I knew that that wasn't normal. And I said to Mum 'that's definitely not your period, Mum. You haven't had a period in years' and that postmenopausal bleeding is the first sign of cancer. I knew I had to put that fear into Mum because she hadn't been to the doctor's in ten years. So I know if I had... I needed to put fear in her to make her go. And thankfully she did go and she was referred very quickly to the hospital. That's when she came out to me she said 'see you anyway! Putting the fear God in me! Telling me it might be cancer!' She said 'it's only a fibroid'. And we were so relieved - so relieved that it wasn't cancer because that's what we had thought initially.
Antoinette [00:06:35] Because fibroids are common and sarcoma is rare, doctors are encouraging women to have minimally invasive hysterectomies. The doctors tend to tell you all the pros of having a minimally invasive surgery. They tend to tell you 'quicker recovery, no scar, you'll be out of hospital the next day, less risk of infection...'. So this all sounded wonderful to us. You know if this is only a fibroid, and this is gonna benefit Mum's recovery, well it's easier just to have it removed minimally invasively.
Antoinette [00:07:10] But what we didn't know at the time is that, no one explained to us, that because Mum's fibroid was quite large to get it out vaginally, it would have to be cut up. We didn't realize that at the time so, Mum had her vaginal hysterectomy in March and it was a few weeks later that we received the news that it wasn't only a fibroid, that it was actually a sarcoma cancer.
Antoinette [00:07:43] At that time, all we were told at that time was that Mum went for a few scans and tests. At that stage all the scans and tests came back clear and we felt so relieved that Mum had just been diagnosed with... It wasn't a fibroid. It was actually a sarcoma cancer she'd had all along. But we felt we'd just had a lucky escape. All the scans and the tests were now showing that there was no evidence of any cancer in her body and we felt so relieved. The doctors basically just said 'you're so lucky. This is what we call a coincidental find. We go in to remove what we think is a fibroid that ends up being a sarcoma. But you're so lucky because on your scans were clear'. It was only then a few months later when Mum went back for a follow-up appointment and had a re-scan just before her 59th birthday that the scan showed that Mum now had multiple tumours all over, all over her abdomen.
Antoinette [00:08:36] At that stage I started asking questions. Why did this cancer come back so soon, so aggressively? I didn't believe that the original scans a few months later, a few months earlier, were correct. So I asked the doctor at that stage 'can I see the scans because I don't believe that this cancer was ever away for it now to be so aggressive. And for you to be telling me that she's only got a few months to live'. So the doctor showed me the scans from just after her hysterectomy and all the scans were clear, and the doctors then just said that sarcoma is rare and aggressive and it's just one of these things. At that stage, I just accepted that it was just one of those things. I had a lot going on; I was dealing with a newborn baby, but a few months later I joined an online support group called Leiomyosarcoma Direct Research Foundation. And as I was watching this group for a few weeks, I was noticing there was a lot of women coming onto the group introducing themselves, sharing their stories - women from all around the world - and the stories all seemed to be very similar. All women who were told it was 'only a fibroid'. And then afterwards it turned out to be a leiomyosarcoma. So, I did a bit of research and then that's when I found out that actually there's no test preoperatively that can tell the difference. And that every time the doctor's telling a woman that it's 'only a fibroid', they're basically just assuming and guessing and hoping that that's what it is. But they can't really be sure.
Antoinette [00:10:10] Then there were some other people on the group. There was a lady on the group, her name was Amy Reid. Amy is, sadly has passed away now but her and her husband Hooman started a big campaign in America in 2015 after Amy had had a procedure known as morcellation which had spread her presumed fibroid, which ended up being a sarcoma and ended up spreading her cancer. So once I'd read Amy's story and had a chat with her, I started then to reflect on Mum's and start to think well maybe could this have happened to Mum and to all these other women? Could their fibroids have maybe have been morcellated and that's why the cancer had become so aggressive and had spread so quickly? So I did start asking Mum's doctor some questions. I think people thought I was a bit crazy when I started asking these questions. People that I had worked with were starting to say 'are you sure you're - you've just had a baby, is your mind okay? Are you sure this is what you should be dealing with right now? You should be focussing on your Mum, focussing on your baby. You're doing too much reading...' You know? But the more I read, the more I started to think 'I think this is what happened to Mum'. So I'd asked to see Mom's records. This was in the January time, I'd asked if I could see Mum's records and when I read Mum's pathology report, I was so shocked and horrified. It had said that Mum's womb and her tumour had been removed in fragmented pieces, and that the tumour was so fragmented that it was difficult to determine the size or extent of the lesion. No one had ever told us this when Mum was first diagnosed. Being a midwife and my sister being a nurse, if we had have known this information at the time that Mum was diagnosed, we would have known that the chances of this cancer coming back were very, very high.
Enda [00:12:06] By now you'll probably be as struck as I was at how articulate and calm Antoinette is when explaining what happened to her mother. Part of this no doubt is her medical background as a midwife but there's also a kind of calm weariness that comes from having uncovered something that's difficult to believe and having to try to communicate this to others who may not be inclined to believe what she's saying. There is passion there but it's tempered, as if she's well aware that what she's saying could be dismissed as just grief. But what she's saying is just too important to risk being misunderstood.
Enda [00:12:44] My understanding of the work that you've been doing since then is... It's fair to say that sometimes doctors get it wrong.
Antoinette [00:12:52] Mm hmm.
Enda [00:12:53] But you see it's not just a matter of someone getting it wrong, it's actually it's a bigger and more preventable thing. So it's not a case of, you know, the doctor or whatever the guidelines are as such. And everyone's doing their best and then - boom - something slips through the net. But this is actually something that's avoidable. Is that fair?
Antoinette [00:13:14] Yeah. Well I think because sarcoma is rare and you think you're the only person that this has happened to, you accept it and you feel well if the doctor really thought this is a fibroid and it turned out to be a sarcoma, well what are the chances that this happened and it's rare as I thought. But it's only actually when I joined the online support group and realized that it wasn't actually as rare as what it was portrayed to be. And that actually the risk of a fibroid being cancerous is much higher than what gynaecologists tell you. And that risk increases with age. So some of the studies that I've been reading, I find that for someone of Mum's age, that the risk of a fibroid being a sarcoma cancer is actually 1 in 100. That's a quite a high risk. And if we had have known that, it would have helped us make different choices.
Antoinette [00:14:06] My local hospital had asked the Royal College of Gynaecologists to do an independent review into Mum's care, and the Royal College did that and they did come back making some recommendations of things that should change. But I'd also realized that really there was no proper informed consent right there for women. So then I thought well the Royal College gynaecologists are the people who are responsible for providing these guidelines. So I went back to the Royal College - thanked them for doing the review into Mum's care - but highlighted to them that I didn't think that Mum's case was an isolated case. And believed that this was happening to women all over the country and actually just went... said - I don't know where I got the strength or the courage! - but actually just said to the Royal College 'you are the people who are responsible here for making these guidelines, safeguarding these women and I don't think that currently you're doing that'. I did get a positive response back from them. They did agree that I was right and that the informed consent wasn't as it should be and that there was room for improvement and they did agree that they would look into this and that they would provide clearer guidelines for practitioners. A few months later then they contacted me to say that the guidelines, they had put them together, and they'd asked if I would be happy to peer review them before they went public. That's what I realized after a peer review in the Royal College's guidelines that this issue was even bigger again than just my Mum's. I realized then that this was a flaw within all gynaecologists, that the Royal College guidelines, okay, they were bringing informed consent saying that women should be given options, but the one thing that the guidelines wasn't saying is that women should be told preoperatively - that no test can determine which presumed fibroids are actual fibroids and which is sarcoma. And I feel that this is the fundamental thing that needs to change. Before women can make a choice of how they want their tumour removed, I think they really need to know that this isn't 'only a fibroid'. There is a chance that this could be a sarcoma. And all of the research out there is saying that the chances of this happening is basically about one in 300 but it can be as low as one in 100 in women of my Mum's age. And I just feel that women need to be told this from the onset: that you probably do, this tumour that you have within your womb, probably is a fibroid, but there is a small chance or a chance that this could be a sarcoma. And just give women options of how you want it to be to be removed.
Enda [00:16:54] Antoinette's clarity here is a result of months of research, listening to experts and patients, talking to people online and in person, travelling, approaching organizations such as Sarcoma UK, corresponding with the Royal College of Gynaecologists in London, gathering evidence and getting all of her ducks in a row. All of this while coping with the grief of having lost her mother. She makes it all sound straightforward, but this type of work takes its toll.
Antoinette [00:17:25] It's taken up a lot of my time. I've haven't returned to work. I took a career break to focus on this. Because I was so consumed by it all. I just, I feel that when you think about the stages of grief, I suppose, the last one is acceptance. And for me to accept everything that happened to Mum, I think I had to see that things were going to change for others before I could accept what had happened to Mum. And that's why I every time I got a knock back, I had to just get myself back up and just say 'you have to do this for other women. You can't just sit back and allow this to keep happening'. And now that the Royal College, once they brought out their the first guidelines and they didn't include that information about the difference between a fibroid in a sarcoma and I went back to them. They did agree to put together a task force to look into this. And I'm just waiting now to see what the next set of guidelines [are] and I'm really just hoping that they're gonna be these new set of informed consent guidelines and are going to give women informed consent. Because this whole process has been so hard, it's been so difficult, it's been exhausting. It's taken over the last three years of my life and I really would just like to get some sense of closure. And if I know that other women are going to be given informed consent and given proper information that's not biased and that's going to give realistic statistics, not ones that are cherry picked, I feel then that I can get a sense of closure on this. And something good has - if you can say that - but if something has come from this to help others, it'll help me accept what happened to Mum.
Enda [00:19:11] Your... Would it be fair to say that before this you weren't....
Antoinette [00:19:18] I'm a quiet person, very reserved, yeah. So to be honest, I'm actually amazed at how I've got the strength to keep going because normally I'm not a... I'm a quite quiet and reserved person; don't like public speaking, don't like confrontation, do anything to avoid it. But I think when you realize that something is so wrong, I think you just have to make... It's been difficult but I've had to make that stand. And each wee stage I was getting closer and I thought 'I can't stop here. I've got to just see this through'. You know when you do, when the time comes, you do get the strength to keep going. And I did promise Mum before she died, although it was too late to help her, I did promise that I would do everything that I can to help others. And I think that's what's helping, help me keep going with this.
Enda [00:20:14] So, would it be fair to say you were an accidental activist? [Laughs].
Antoinette [00:20:23] I know it's so funny when you refer to me as being an activist. I kind of almost cringe because that's not me! When I think of an activist, you're thinking of people for women's rights and things like that. You know the women burning the bras and that's so not me. But I think it's just one of, the more I've learned about this whole situation, and I've learned about morcellation, and have learned about fibroids, I think I just felt convicted that now that I know this information, I have to share it. I can't just sit back and accept, and it's not only our lives that's been devastated, this has happened to lots of other women and it's going to continue to happen to other women unless someone like me - someone who's normally very reserved and quiet - makes the stand. And I think it's just because I have a bit of medical knowledge behind me that I feel if it could happen to me, it can happen to... If it could happen to my family it can happen to anybody and maybe they might make the same connection that I was able to make. And I think it's just to know that I can help someone else is what's helped me in this journey.
Antoinette [00:21:31] I don't necessarily want... I think when I first approached the Royal College of Gynaecologists, I think they thought maybe I'm all against morcellation and that I want morcellation to stop. I'm not. But what I'm all about is just giving women informed consent. Giving women options and not just routinely doing the least invasive because you think it's in the patient's best - the doctor thinks it's in the patient's best interest. It's just about being open and honest: giving the women the information and letting them choose what's in their best interest rather than assuming that you know what's in their best interest.
Enda [00:22:11] In front of me there's the old walls of Derry and on it, there's a sign in the LGBTQ rainbow style for Lyra. This is Lyra McKee who was shot last week, tragically. There's also the hashtag #SingForPeace. There's going to be an event tonight honouring her. It's sad to think that after so many decades of peace that's another life is taken unnecessarily. But here's the hope. The community here are taking this tragedy and they're making something positive from it. Courage is indeed found in unlikely places.
Enda [00:23:22] My name is Enda Guinan and I work for Sarcoma UK. Our mission is simple. We want to ensure that everyone affected by sarcoma cancer receives the best treatment, care, information and support available and to create the treatments of the future. There is a Support Line if you'd like to talk to someone about anything related to sarcoma. And you can find out more about us at sarcoma.org.uk.
Enda [00:23:48] Just as we went to upload this episode, we found out that the Royal College of Obstetricians and Gynaecologists have not only taken on board all of the comments and concerns that Antoinette had, but they've gone even further than expected. We had to give her a call.
Antoinette [00:24:03] I really am delighted to hear that the Royal College of Gynaecologists have introduced guidelines around morcellation and that women with presumed fibroids who are considering surgery will now receive informed consent. Although it's too late for my Mum, who is very sorely missed, I do believe that these guidelines will help other women with uterine sarcomas receive earlier diagnosis, that they will have proper surgical removal and that this will lead to improved prognosis. This is all I've wanted and I really am delighted.