Discovering a borderline tumor in your 20s, with Lucy Rudd

[00:00:00] I was getting ready for bed and I was putting my pajamas on.

[00:00:03] I could see maybe a little lump on my stomach in the mirror we have mirrored wardrobes,

[00:00:09] but because I also do due to jutsu, I was like, is musta make getting hard? Is it muscle?

[00:00:14] What is going on here? We got into bed.

[00:00:21] Ly and flat. You could see it was actually a lump, it wasn't hard, muscle, it was a hard lump.

[00:00:28] This is Lucy Rudd. The story that she's telling took place last spring when she was 28 years old.

[00:00:37] I sleep on my back, so I musta make quite flat and then I would have this little lump at the end

[00:00:43] and then it was my partner John who said I think we should bring the doctors about this just in case.

[00:00:54] Called the doctor, expected an hour would be 20 minutes. I was in F2 hours,

[00:01:00] I had three different people come see me, come examine a stomach,

[00:01:04] had internal examinations, they asked me if I definitely wasn't pregnant.

[00:01:10] A few months before this I had my copper coil checked because maybe that displaced and

[00:01:14] why I was bleeding constantly, they said they'll do a pregnancy blood test just to make sure

[00:01:20] that it's definitely not surprise baby and we'll run some tumour markers and then you

[00:01:26] that it wasn't going to be a baby. Honestly, my mind it was quite blank. You just don't,

[00:01:33] you don't think it would be a tumour, you think these tumour markers are going to come back normal

[00:01:37] why would it be a tumour? I was 28 years old. I still lost an over-app but

[00:01:45] it was a stage one tumour and it was borderline so it wasn't, it wasn't cancer. It was on the

[00:01:52] turn to be cancer I caught it at its earliest stage. You're listening to Overlocked. I'm Golder Arthur.

[00:02:03] You know when you go to the doctor and they find something but they don't know what it is,

[00:02:07] the next step is always a series of tests and that waiting period for the results of those tests

[00:02:14] is a tough time. It's filled with anxiety and fear fueled by a lack of information

[00:02:20] and a scramble to understand our bodies in a different way. And sometimes it's a time of clarity too

[00:02:28] when your life comes into focus and you see what's really important. It's a time we don't

[00:02:34] talk about often. Lucy wrote my guest in this episode, takes me into what happened during this tough

[00:02:41] time in her life. When she was 28 years old, she was diagnosed with a borderline ovarian

[00:02:47] tumour as you heard her say a tumour that was on the turn to be cancer caught at its earliest stage

[00:02:54] a very rare thing. They removed one of Lucy's ovaries as a result. Lucy lives in the UK

[00:03:01] and you'll hear her talk about the NHS, the healthcare system there. We're starting a new season

[00:03:08] of overlooked with this episode. If you're listening to this, you're part of a community of people

[00:03:14] who believe that women's health can't wait. I hope you'll get on our email list to receive our

[00:03:19] newsletter too. Head to overlookedpod.com for more. Now here's my conversation with Lucy RUD.

[00:03:36] Hi Lucy, welcome to the show. Hi. I'm really, really grateful that you're sharing your story.

[00:03:43] Before we hear that story, tell me a little bit about yourself. Like, you know, when you go to

[00:03:49] some of these work meetings and stuff and you have to wear a little label and says,

[00:03:52] my hello, my name is Lucy. Give us the hello, my name is Lucy in Troll.

[00:03:57] Hello, my name is Lucy. I'm 29 years old. I'm a biomedical scientist at Cumbland in Firmary.

[00:04:04] What does a biomedical scientist do? So I work in the Pathology Department at the hospitals for

[00:04:10] the NHS. I test all the fluid, blood samples, help diagnose cancer's cross-match blood to get people

[00:04:17] ready for transfusions to limit their chances of a reaction. And I'm going to ask you a really

[00:04:23] personal question now, Lucy, but how old are you? I'm 29. I was 28 when I had my tumet. It was

[00:04:29] less summer. Well, okay. So let's do this difficult thing. Let's go back to last summer. Tell me

[00:04:35] a story. I suffer for my BS, so I originally thought that my symptoms were just IBS until

[00:04:45] a lump started protruding but from a lump it quickly turned into a pelvic mass. So when I rang

[00:04:51] my GP, it was a lump, but it was a couple of days. I forgot my appointment and it turned into a big

[00:04:57] mass within those couple of days. And so what happened after that on the test results came in?

[00:05:03] The next day I got a call to say, my C.M.125, the ovarian tumet marker is high so they're going

[00:05:10] to run some other tumet markers so I was back in the doctor's the next day for some of the blood tests

[00:05:15] for some more tumet markers. They all came back fine and I'd been sent for an urgent referral

[00:05:21] for an ultrasound and they told me not to worry the C.M.125 tumet marker is a non-specific tumet

[00:05:29] it can be raised for cysts which I originally knew about. It doesn't necessarily mean a cancer or a

[00:05:36] tumet. So at that point I was still like, it's okay. I think it was 197 and you normal one is the

[00:05:44] is between 0.35 so I thought at that point it's 197 so I thought maybe this is a assist that we're dealing

[00:05:52] with. I wasn't overly, overly worried at that point and then it was too

[00:05:58] weak later when I had my ultrasound and even then there were still saying we think this mass is

[00:06:06] measuring between 14 and 16 centimeters we still don't know what it is so there's no need to worry yet

[00:06:13] we'll send you for an MRI and a CT scan and then you have an appointment with those results

[00:06:18] and we'll go from there and they said if it looks like a complex mass they would refer me to the

[00:06:24] specialist hospital in Newcastle and get said it was after my CT and my MRI when I had

[00:06:33] was supposed to have that appointment where they were supposed to tell me what this was and give me

[00:06:39] all the information of what was going to happen. They didn't mean my partner John it felt like I was

[00:06:46] there for five minutes and all the said to me was so we've referred you to Newcastle tomorrow

[00:06:52] are you okay to go to an o'clock in the morning? It was just a little bit of shock and we said yes

[00:06:59] we can get there but what is this and they said we don't want to give you any information that

[00:07:05] could potentially be wrong we think it's best if Newcastle deal with all they gave us these

[00:07:10] handful of leaflets a few more charities. I said take as many people as you want to

[00:07:16] morrow your mom if your sisters you've not had taken many people to disappointment it's better

[00:07:20] to have more people there who can listen to the information different people might take in

[00:07:25] different things than we left and we've just both in a bit of shock and as we were walking at the

[00:07:31] hospital I looked at John and I was like well this doesn't sound good does it? What's going

[00:07:36] your mind at that point then Lucy you're standing there with John handful of leaflets of

[00:07:41] cancer charities they've refused to tell you what it is and you're going to you've got a

[00:07:47] appointment the next morning at the hospital that you know we'll tell you what it is what's going

[00:07:52] through your mind in that moment is just standing there. In my head I thought I've got cancer in the

[00:07:58] not telling me what does this mean and what were the feelings associated with that thought.

[00:08:04] Scared anxious it's the unknown isn't it so then what happened the next morning and

[00:08:12] in the new hospital? I had two doctors in my consultation they examined

[00:08:17] Matomi internally and externally again and they said that from the ultrasound

[00:08:24] and the MRI CT they think that we are dealing with a possible cancer they think it's spread

[00:08:32] CT and MRI sure thickening of my prerotinium which shows that they think it's spread outside

[00:08:39] of the ovaries so I hope potentially looking at like a SS stage 3 the don't know how far it's

[00:08:46] spread they recommend a full history rectum which would mean I'd go in a surgical menopause

[00:08:52] depending on how complex and sticky this masses I might lose some mass-mall intestines some

[00:08:57] bowel but this is worst case scenario but you just have to tell you about it. She said

[00:09:03] the did say best case scenario it's not stuck to anything we can remove the tumour

[00:09:09] but we'd still recommend a full history rectumate because of the potential and obviously

[00:09:14] I'm at the time 28 years old not children we would do to get married at the end of November 25

[00:09:23] and then we were going to talk about children just being John went and then that was

[00:09:31] the Tuesday and they offered me my surgery for the Friday but I think this saw the shock

[00:09:37] and confusion on my face so they said if I want the weekend to think about it process what's happening

[00:09:42] I can have my surgery on the Monday so I went for the Monday that weekend must have been

[00:09:48] well it was actually one of my friends weddings as well which is why I also thought if this is

[00:09:55] cancer then this is going to be my last time that I'll be able to do anything fun for a while so

[00:10:00] I do want to make this wedding and so the Saturday was a nice distraction and then as soon as

[00:10:07] that's some dimontant hit I think it was written all of my face like the fear the anxiety the panic

[00:10:13] for listeners who don't know tell us what a borderline tumor is so it's not a

[00:10:20] malignant cancer but it's also not in on non-cancerous tumour the words gone out my head what's

[00:10:27] the opposite to malignant benign benign benign thank you so it's not a malignant tumour it's not

[00:10:34] cancer but it's also an open nine it's in that in the tweenny stage which until I got diagnosed with

[00:10:40] I didn't even know that was a thing I thought you either had cancer or you didn't have cancer I

[00:10:44] didn't even think about this in between a stage so it's in this in between stage on its way to being

[00:10:50] a cancer but I was as I thought you had a strong feeling I thought you were still lost an over a

[00:10:56] but um it was a stage one tumor and it was borderline so it wasn't it wasn't cancer it was

[00:11:04] on the turn to be cancer I caught it at its early stage yeah that's pretty uncommon so take me into

[00:11:12] that Sunday morning and the calculations you're making in your mind about what you should do

[00:11:19] what is about to happen presumably you were weighing what was going on with what you wanted

[00:11:25] for the other bits of your life I asked them in that meeting on the Tuesday to take away a little

[00:11:32] as they could like take away what they think is necessary but as little as they could and they said

[00:11:39] doing that potentially means another surgery in a few weeks time depending on what the

[00:11:44] histology of a pot comes back so it might still end up taking everything away and I thought that's

[00:11:50] fine at least we have a diagnosis then and we know what we're dealing with but for now I just

[00:11:55] want a bad minimum taken away like my fertility to be preserved as much as they could

[00:12:01] can you describe to me what going into that surgery was like you know they they prep you for surgery

[00:12:07] don't they take me into what your pre-surgery moment was like where were you what was going on

[00:12:15] what was going through your head we were trying to make light of the situation I got these sexy

[00:12:21] paper punched upon as well underneath my hospital gowns I was trying not to think about the

[00:12:27] surgery when it was with John he was allowed to stay with me up until the very last minute and then

[00:12:33] when he left and that was on the bed on my own mind is racing and all sorts is going through just

[00:12:44] anxiety we're gonna take a quick break back in a minute are you curious about what it's like

[00:12:51] working in healthcare today do you believe in the power of storytelling I'm Dr Emily Silverman

[00:12:58] the host of the nocturnist podcast where healthcare workers share personal stories of joy,

[00:13:04] sorrow and self-discovery each episode whether a compelling performance from one of our live shows

[00:13:10] an intimate series of audio diaries from one of our documentaries or an engaging conversation with

[00:13:17] filmmakers aims to connect provoke and inspire learn more at the nocturnist calm

[00:13:24] or subscribe to the nocturnist wherever you get your podcasts so after surgery what do they tell you

[00:13:35] what what the picture became clear after that I presume after the surgery they were a lot more

[00:13:41] optimistic straight after the surgery after it came around a little bit they said it went very well

[00:13:47] they were very pleased and we're potentially looking at a borderline tumour and I asked for a copy of

[00:13:54] my histology report as well three millimeters of my tumour was actually malignant I do feel

[00:14:01] fortunate that it was caught so early but I was felt so confused that there was still telemionated

[00:14:06] to have a history rectumium I might but it's not cancer I'm curious though when you know you are

[00:14:13] working from within medicine and you understand not just medicine but the healthcare system

[00:14:21] and all its complexities and nuances how were you in your mind in that moment matching all the

[00:14:28] confusing things that they were telling you about what they thought you had what you ended up having

[00:14:33] what they wanted to do next how are you making sense of all this in that emotional moment

[00:14:39] that was already driven with so much anxiety I don't think I did make sense of it to be honest

[00:14:45] one of my first thoughts when the told me about needing a full history rectumium was

[00:14:50] osteoporosis like the ovaries help with that why they tell me that need to get rid of mine

[00:14:55] that 28 years old so I couldn't fault the healthcare system I know in every single department

[00:15:01] it's understood underpaid I didn't actually have to wait an extra week to get my histology

[00:15:08] report results because of the junior doctor strikes they had to catch up with the surgery so

[00:15:13] postponed the clinics for the results so that felt like the longest week of my life and I think it

[00:15:19] was that week that I had the most horrendous breakdown that's when all the emotion hit me

[00:15:26] I couldn't stop crying just waiting for that extra week yes the told me after my surgery

[00:15:32] it was a lot more positive than what they thought but they couldn't tell me what it was still

[00:15:37] and what has happened since then so since then I've got referred to the fertility clinic as

[00:15:44] well because I lost my left ovary and tube out of choice of taken bare linimum out and not been

[00:15:52] given a time frame of my right ovary increased risk of reoccurrence they told me I could have my

[00:15:59] right ovary for it's got to be six months could be two years could be five years could be 10 years

[00:16:06] could be the rest of my life put the do recommend a full histric to me when I'm ready if I haven't

[00:16:12] had a reoccurrence but if a reoccurrence does occur then I won't get that choice so I wanted to freeze my

[00:16:18] eggs so they referred us to the clinic we got rejected because I still have my right ovary

[00:16:26] potential there to fall pregnant naturally even though there's an increased risk of losing my ovary

[00:16:34] before that happens and it turns out my ovary isn't functioning like a normal ovary or a healthy

[00:16:40] ovary you should be producing between 16 and 20 follicles a month this part of your monthly cycle

[00:16:46] and they saw potentially only five with one look at like it was going to do what it's supposed to

[00:16:56] so my right ovary has been given a five to 10% chance of being able to conceive through an IVF

[00:17:04] process they said trying to harvest eggs wouldn't be great the don't think there would get many

[00:17:11] and the ones that they do get won't be good they think they obviously don't know they think so then it's

[00:17:18] going through a traumatic process to get these eggs harvest to go in the freezer that might not

[00:17:22] survive the freezer process that might not survive the thaw in process that might not survive

[00:17:27] fertilization that might not take is a lot more complex than what people think oh you're not ready

[00:17:34] for baby freeze your eggs it doesn't it doesn't work like that so I found that quite hard

[00:17:40] I described to one of my friends I felt like I was on two rollercoasters at the same time just

[00:17:44] crashing into each other I had a tumour roller coaster and a surge free rollercoaster and then a fertility

[00:17:50] rollercoaster all at once I want to ask about symptoms you have been told that you know if there's

[00:17:57] a recurrence they will have to take your other ovary and full of pintuums so it's not really

[00:18:03] symptoms aren't really a conversation that's been left in the past right because you still have

[00:18:09] to keep them in mind this is a really tough cancer to catch early because the symptoms are so

[00:18:16] so masked so tell me a little bit more about how you think about symptoms in early diagnosis

[00:18:22] at the moment I'm getting scans every three months but in the two my three and my six

[00:18:26] month scan it was a few weeks before my six months scans and my symptoms for my ABS were off of

[00:18:34] the scale again that panicked me I thought I've had just been eaten the wrong things is this a tumour

[00:18:41] so I panicked a little bit that this could be a recurrence before we've had chance to have a

[00:18:49] family so I emailed my hematology nurse straight away the got me in within two days I had my

[00:18:56] six months scans brought forward and they have found a two centimeter cyst on my arumen in

[00:19:05] normal they said they think it's a healthy cyst that we get a part of our monthly cycle but

[00:19:13] keeping an eye on your symptoms like you say you're on edge all the time thinking is this a

[00:19:20] symptom is it just my ABS you're walking this line at all times right yeah you don't want to

[00:19:27] feel like you're being dramatic but you also you don't want to not say anything about it in case

[00:19:33] it is something serious and you've left it. I want to ask I ask all guests on this show this

[00:20:00] question and you can answer it in any way you want to but obviously the show's called overlooked

[00:20:06] you know I want to drill down very deep into the heart of where the inequality is in women's health

[00:20:12] so I want to ask you Lucy in your experience what has been the most overlooked aspect and where

[00:20:22] is the inequality felt the most intensely? For me it was the fertility side of things so John

[00:20:31] my partner he already has a child and they wouldn't freeze my eggs because of that and we wouldn't

[00:20:41] get funding for our IVF even though I'm the one with the problems it's my eggs that aren't

[00:20:50] functioning how they should be it's me who has a risk of a reacorrence of a tumour but because he

[00:20:56] already has a child they won't give me the funding for my eggs that was the reason

[00:21:05] because my partner already has a child we can't get the funding that's where I felt the most in just

[00:21:11] yeah yeah well to bring this to a close Lucy let me ask you how are you now and what are you

[00:21:19] thinking about that's the next step for yourself in your life? I feel a lot more positive than where I was

[00:21:25] a few a few months ago my scans are pretty regular I can't fault my hematology nurses are the

[00:21:32] NHS system here they've been amazing any symptoms or worries or queries they they get me in straight away

[00:21:40] so I'm a lot more positive we're seeing what happens without fertility or hoping I don't get every

[00:21:47] occurrence my chances of a very occurrence within the first few years especially a higher than our

[00:21:52] chances have been able to conceive at the moment so the odds aren't in our FAFOR but try to be positive about

[00:21:59] that well best of luck to you Lucy and do keep in touch thank you you too

[00:22:08] I recorded this conversation with Lucy earlier this year and now she's got great news she's pregnant

[00:22:16] and do you later this fall? I know you'll join me in wishing her well

[00:22:21] overlooked is written and produced by me Golda Arthur Jessica Martinez theos is our rock star producer

[00:22:29] we're building a community around women's health so that no one is overlooked if you'd like to be

[00:22:35] part of it sign up for the newsletter at overlookedpod.com get in touch with us by emailing hello

[00:22:41] at overlookedpod.com thanks for listening