For our next Pieces of the Continent, we spoke to Clare Baumhauer, who was diagnosed with vulval cancer at 43. Clare talked to us about her experience with cancer, how difficult it was to get the correct diagnosis, and what she’s been doing now to raise awareness around her cancer and HPV.
Q. Tell us a bit about yourself – name, age, job, family?
My name is Clare Baumhauer, I’m 45 and married to Matthew for 12 years, but we’ve been together since we were 18.
I have a 19 year old daughter Chloe who is at university, and a 14 year old son Ben.
I was in retail up until I started a family, then part time working in a football stadium as logistics and training on match days.
Q. What is your story of being diagnosed?
Since I was a child I’ve had itching and burning on my vulva area, but was told it was cystitis at first, then many times over the years doctors told me it was thrush, even without examining me.
When I was 43, I got a tear in my perineum which did not heal and then turned into a ulcer-like sore which kept getting bigger so I went back to the doctors again and was told it was herpes, but after I said I’d been with my partner for 25 years she looked again and said actually it could be vulva cancer, so I was referred urgently for a biopsy which showed I had lichen sclerosus and vulva cancer. Both conditions I have never heard of.
Q. How did you feel when you got your diagnosis?
I was in shock because I didn’t know you could get cancer there. I hadn’t heard of vulva cancer before and was scared. I’d had the ulcer over a year and had itching and the tear a while so I thought it must’ve spread and I would only have a few months to live.
The wait to find out my scan results and plan was the worse part as you think the worse.
Q. Can you tell us a bit more about your cancer – what causes it, how it can be prevented?
Vulva cancer is a slow growing cancer and can be caused a few ways:
Mine was from a skin condition called lichen sclerosus, which I had undiagnosed since a child, with 5% of cases turning to cancer, especially as I hadn’t been using the steroid treatment to thin the thickened scar tissue areas.Vulval intraepithelial virus (VIN) is a precancerous condition that occurs in the skin of the vulva and sometimes can develop into vulva cancer.Human Papillomavirus (HPV) is a common infection,usually passed between people during sex. Some types of HPV are linked to vulva cancer.Paget’s disease of the vulva is a rare skin condition.
Q. What was treatment like?
I had sentinel node biopsy and a wide local vulvectomy. As the tumour grew aggressively they couldn’t get clear margins too close to my bum so I had to have 25 sessions of radiation. Even though my sentinel node biopsy came back clear on my right side, 6 months later a scan showed I had a swollen node on my left side so they operated and removed 6 lymph nodes. 3 came back cancerous, so I had to have 33 more sessions of radiation. I had many problems from this surgery with infections and cellulitis and a longer stay in hospital.
Q.What was the impact of the cancer on your life?
The radiation set off the menopause, so I’m now on HRT. The radiation also has given me lymphedema in my abdomen pelvis and left leg. I have nerve damage and numbness in my vulva and left groin as well as aches and pain on a daily basis. I suffer with fatigue and tiredness all the time. Even though I am now 1 year in remission it feels like you’re a ticking time bomb waiting for it to come back, especially as I still have lichen sclerosus, as it’s a life long condition.
Q, How can we destigmatise these cancers and educate people about them so they are seen as less taboo?
Using the words vagina and vulva more in schools would help, especially as like myself I didn’t know I had a vulva until I was diagnosed with vulva cancer. When you have the puberty talk in schools you should also be learning about the body parts and names, and about the HPV virus.
I don’t remember hearing the word ‘vulva’ amongst doctors or nurses at all over the years, even though I have had 2 children and a smear test every 3 years.
As vulva and vaginal cancer are rare, most cancer charities ignore them and concentrate on ovarian and cervical, so we don’t get to learn about them.
If all nurses were trained in knowing the signs of lichen sclerosus, VIN and vulva cancer and these were talked about during your smear tests along with the HPV virus – how you get it, how common it is and how the vaccine can prevent it – then it would make a big difference.
Q.What would you say to people who oppose gender neutral vaccination against HPV?
To prevent anything is a good thing, especially cancer. I wouldn’t want anyone to go through what I have and if there is a way to prevent that, do it!
If both genders are vaccinated then the virus may soon be as good as gone.
There are several cancers that HPV causes in both genders, so both should get the vaccine.
Plus men can get the virus from women who haven’t had the vaccine, especially if they’re from another country. Men who have sex with men are at a higher risk of the virus as they are completely unprotected by a girls only vaccination program
Q. Is there anything else you’d like to add?
More awareness is needed with posters at hospitals, doctors waiting rooms, back of toilet doors, social media and the media. There are 5 gynaecology cancers and awareness should be equally done.