Louise's Story
I would like to encourage other women to check themselves – if there is something wrong, the sooner you are seen the better, and you know yourself best of all.
When I was 27, about 16 years ago, I had my first episode of vulval cancer.
Back then, what I first noticed was an ulcerated spot. I would describe it as blackened with burnt-like edges. It looked like an ulcer, and it was really bothering me, so I saw my local GP.
She said, “oh, I really don’t like that, I want you to get it seen straight away.”
I did get seen very quickly. They biopsied it and I found out that it was a very aggressive form of vulval cancer. I had a 10-month-old baby and I had to go straight in for an operation. It was a terrible time and it was so much to take in, being a new mother and being told I had cancer.
I was very lucky because I had the operation very quickly. The surgeon removed the ulcerated part but he wasn’t convinced that he had clear borders. So, he then went on to remove all the lymph nodes in my groin to check. This was quite extreme but I think at that time, they couldn’t do anything else.
I had a terrible infection after this operation and I do suffer with lymphedema in my right foot to this day. But, I was very fortunate that the cancer hadn’t spread to the lymph nodes. I was given the all-clear and went on to have regular check-ups.
I was really keen to grow my family and even though my oncologist was hesitant, I was given the go ahead to have more children. I was very fortunate to have two more babies, and I’ve got my lovely family of three boys.
As background, I have a condition that I’ve had since I can remember and it might be quite relevant to people. I have lichen sclerosis in my vulva area. Nowadays, there is more of a known correlation between lichen sclerosis and vulval cancer, but 16 years ago it was less clear.
My lichen sclerosis would flare up and down (itchy and uncomfortable) and the doctors would give me steroid cream as there was no long-term solution. I tried natural alternatives and played around with excluding food groups from my diet, but nothing helped.
During my regular check-ups at my local hospital, they would often do biopsies because given my history, they didn’t want to take any risks.
Overall, it was fine until December 2022, when the consultant did a biopsy and then I found out on the day before Christmas Eve that the cancer was back.
It was all a bit of a shock because I’d had lots of checks and biopsies every 6 months at my local hospital, but nothing had been found and it had been 16 years.
I was always checking myself as well and I am really familiar with my vulva, which I think is so important.
We had family at home for Christmas and then we went on a ski trip for New Year, which we carried on with, life goes on, but all the time we were trying to organise what to do next and feeling super anxious.
The NHS urgently wanted me to get a CT scan as well as MRI scan. They were amazing and we organised that as soon as I got back from my holiday and thank goodness, we found out nothing had spread and it was contained.
Professor John Shepherd had been my original gynaecological oncologist and John Butler had taken over from him, so I thought that would be a good transition.
So, I came to The Royal Marsden and from my first contact with John Butler, I knew straight away I was in the right hands. What a relief that was.
He was so confident and knew exactly what he was talking about, I felt so reassured.
He said it needed to be dealt with quickly. I now know this was a different form of cancer from 16 years ago.
The way Dr Butler described it to me was, this one was like a garden weed, it was growing outwards, it looked like skin growing on skin. Whereas 16 years ago it was completely different, it was blackened, ulcerated and had burnt edges and growing inwards.
So different and yet in exactly the same area.
This recent episode I had two growths growing steadily, one was right on the clitoris. I had a partial vulvectomy. John described it as a horseshoe excision. This included part of the clitoris including the clitoral hood.
The partial vulvectomy was very smooth and really well done. The next day, he said, it’s really good news. It’s the cancer that grows outward, and we got clear borders. We’re happy with it. There’s nothing left over that we’re worried about.
So now I go for regular scans and have my groin area scanned. The skin is actually much better, I feel like the lichen sclerosis has really cleared up because lots of the problem skin was removed.
The Royal Marsden have been wonderful, from Dr Butler to all the staff.
I’m feeling great. I’m a Pilates teacher, and I was back teaching my classes in less than two weeks.
I am really keen to talk about vulval cancer. It shouldn’t be taboo and we should talk about it as much as we talk about checking for other cancers. I know my intimate area well. I know that’s probably more because of my history. I always assumed that women would be familiar with themselves, but maybe this isn’t always the case.
Another thing that is really important to share, whilst it is very personal, is even though he removed the clitoral hood, the clitoris is a very deep nerve. And so, I’m happy to report I still get sexual feeling, I wouldn’t say it’s the same as before. I’d say I get around 65% sensation. John managed to surgically build up some tissue to make it look more ‘normal’ too.
I think if I knew that before I had the operation, I’d feel quite comforted by that. So, if there are any women who this might help, I think it’s important to talk about these sorts of issues and concerns.
Obviously, every case is different.
All my family and friends are aware of what I’ve been through and I’m very open. I would encourage women to regularly check themselves and if they notice anything unusual, don’t ignore it. I understand some would find it embarrassing but it’s worth catching early.
It’s taught me how grateful I am for my healthy, amazing body, and I will never take that for granted, ever. My cancer experience has made me look at things through rose tinted glasses, it just puts everything into perspective, I’m just so lucky and it’s taught me to just appreciate life.