Cancer and Lynch SyndromeGuest Bloggers

Vulval Cancer – Finding My New Normal

This week I am pleased to introduce our first guest blog written by Clare Baumhauer, who works relentlessly to raise awareness of vulval cancer, a gynaecological cancer most people have never heard of. I had never heard of it before my own womb cancer diagnosis. It was only after when I started to find out more about womb cancer that I learnt about some other gynecological cancers.

This is why raising awareness of lesser known cancers is so important. Because so few people are aware of the rarer cancers, they often miss the early signs leading to later diagnosis.

Below is Clare’s story. You can also find her on Instagram as vulvalcancerukawarenesss.

Finding My New Normal by Clare Baumhauer

Picture of the guest blogger Clare Baumhauer
Clare Baumhauer

March 2016

I came out of the doctor’s room in shock! I could have Vulval cancer!

When I walked out the surgery to my husband who was waiting in the car with my son, I was trying really hard not to cry. I needed to get home.I remember feeling sick and holding back the tears so my son didn’t ask what was wrong. He’s only 11 and has autism so wouldn’t understand. Hell, I didn’t understand! I had never heard of vulval cancer; I didn’t even know the outside area was called vulva.I got home and then told my husband what the doctor said. He looked shocked.

I had to wait for a call for an appointment to see a gynaecologist and have a biopsy. I was told it should be within 2 weeks.

That night I went to bed but couldn’t sleep. I started to cry. I went downstairs so no one could hear me, especially as my son and daughter didn’t know. Before I told family, I wanted to wait until I knew everything. I cried so hard I collapsed to the floor in my kitchen and stayed there for a while. I just wanted my mum, but she wasn’t here.

I was sure it was cancer as I’d had the symptoms and ulcer nearly a year so I thought it must have spread! I told myself I had weeks, maybe months to live.

Coming To Terms With It All

I came to terms with death quite easily until I thought about my family. If I died, I wouldn’t see my son and daughter grow up, get married or have kids. Help them in life. I then thought back to how I felt when I found out my mum had cancer and what it was like when she died. I realised how scared she must have been and how I felt when I was told.

I didn’t want my kids to go through that.

The next few weeks were a blur! I sorted all my stuff out so my daughter and husband didn’t have to.
I packed up most of my stuff in my bedroom and sorted through all my clothes. My poor husband made about four trips to the tip.

I took my daughter shopping and brought her lots of things. I nearly brought a couple things for myself.

holding hands
Photo by Roman Kraft on Unsplash

Then thought, what’s the point I won’t be here to use them.

I had my biopsy, which was a day before my birthday. Only my husband knew, so it was hard to act normal around others. I thought that would be my last birthday.

I arranged my funeral in my head, found flowers and a coffin I liked, and saved them on my phone.
I would go for a bath most nights and just sit and cry as that was the place I didn’t hold it all in.

Vulval Cancer Diagnosis And Treatment

I got my biopsy results of Lichen Sclerosus (again, I had never heard that condition before either) and squamous cell carcinoma (Vulval cancer).

I then had to have PET scans and MRI and wait for the results to see if it had spread. I had convinced myself it had and was having symptoms of bladder and bowel cancer.

The next couple weeks seemed to go so slowly, but finally got the results. It hadn’t spread and surgery was in two weeks’ time to remove the tumour and sentinel nodes biopsy to test if it had gone to my lymph nodes as scans were unclear.

What a relief! It hadn’t spread and was at stage 1b. Then the symptoms I was having all went! Surprising what you can imagine and trick your body.

I had a plan of treatment and felt positive and so much better.

I now told my 16-year-old daughter, which was the hardest thing I’ve had to do! She had already lost her nan to cancer. I decided not to tell my son as he wouldn’t understand and as having autism means he has no empathy.

I then told the rest of my family and friends.

Photo by National Cancer Institute on Unsplash

I wasn’t scared or worried about the operation, just wanted it over. The surgery went ok but between my scan and the operation the tumour grew aggressively. It was now too close to my bum to get clear margins, so I had to have radiotherapy to make sure. The lymph node biopsy came back clear.

I stayed in hospital for five days and once home I had to lie in bed mostly for four weeks as sitting was too painful, especially as all my stitches came out so it took longer to heal but it was ok.

Once I had healed enough, I started five weeks of radiotherapy (August 2016) which wasn’t easy. I was tired all the time and had bowel problems, and my skin on the inside of my groins went red and hot. Then the skin started to come off and weep. I found walking painful and the journey up to London on the train during the hot weather extremely hard. But I did it!

The Cancer Has Spread

After a few weeks I went back to work and tried to get back to normal, but my scan still showed a swollen node from a previous scan. They decided in December 2016 to remove more nodes to check. They removed six lymph nodes from my left groin and three came back cancerous. I was devastated again!

It had already been nine months, and I was going to have to have more radiation on both left and right nodes, plus my abdomen to make sure.

Cells
Photo by National Cancer Institute on Unsplash

I spent New Year’s Eve weekend in hospital because I got cellulitis while on holiday and had two more operations on my groin. I spent most of January 2017 in hospital because I had many problems getting the infection under control and had to have the groin drain put back in. I then started my second lot of radiotherapy in March 2017.

33 sessions over eight weeks. I knew what to expect this time and as it was higher up walking this time was much easier. Still having bowel problems and so tired all the time. By the time I had my next scan it had been 16 months of scans and treatment, and finally in July 2017 I got the all clear! In remission, cancer free.

It had spread to my lymph nodes so I beat stage 3 vulval cancer! Yes, I was happy and relieved but I had been on autopilot the last 16 months so now it was over? I can get back to normal?

No, now I have to deal with the side effects of the surgeries and the radiation. It put me straight into the menopause and I then had lymphedema confirmed in my legs, pelvis and abdomen. I have nerve damage and pain in my left groin. I still have bowel problems and am tired all the time But yes, I beat cancer! For now!

Living With The Long-Term Effects

I still have Lichen Sclerosus, which is the skin condition that caused my cancer and was left untreated for many years, as it seems I’ve had since a child. However, the doctors missed it or misdiagnosed it as cystitis and thrush multiple times over the years.

I had swobs and blood tests, but Lichen Sclerosus was never mentioned.

If a doctor or nurse had recognised the symptoms, I would have been diagnosed much earlier and been using the steroid. I might not have got cancer as there is only a 5% chance of Lichen Sclerosus turning to cancer if the skin is left to thicken, and the cancer would not of had time to spread to stage 3.

I would not have had to have radiation, which caused all my life-changing side effects. If I had known about LS and Vulval cancer, I would have gone back to the doctors and not given up going.

If I hadn’t seen all the adverts for thrush and Vagisil for vaginal itching and thinking, this must be normal.
If the nurses that did my smear tests had training in LS and vulval cancer.
If midwives had also had training in LS and Vulval cancer, then it would have been diagnosed on one of the multiple times I’ve seen a nurse or midwife.

It’s now been a year since I got the all clear, but life hasn’t gone back to normal. It never will. I have to find my new normal and accept every new sore or red area or pain that it could be back! I worry that other symptoms are a different cancer.

Worrying every time I have a scan, they find something. It feels like a ticking time bomb. I worry that my family will get cancer too. The depression and bad days.

I still go for a bath and have a good cry.

I feel the guilt you have for surviving and when others don’t.

The anger of so little awareness of both conditions.

Raising Awareness of Vulval Cancer

Symptoms of vulval cancer
Picture from the LSVCUK website.

Why doesn’t the medical profession know enough about vulval cancer and often misdiagnose it?

Just because it is common in the older women, they dismiss it if you’re younger.

So now I’m trying to raise awareness as much as I can. Especially as Vulval cancer doesn’t have any charities of their own or an awareness day/week of its own or official ribbon or any celebrities to help or have tea parties.

More awareness and research is needed in LS, VIN ,Vulval and Vaginal cancer.

I don’t want anyone to go through what I have and am still going through.

Nurses and GP’s need training in all these conditions, especially those that do smear tests.
Vulval cancer needs its own awareness week to make any impact.

I like to help whoever I can, whether is tips, support or just someone to talk to who is going through the same as you.
We need to use the word Vulva more!

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Picture from the LSVCUK website.

I would like to say a huge thank you to Clare for sharing her story. You can find out more about vulval cancer and Lichen Sclerosus here.

The Eve Appeal also has more information on vulval cancer.

If you have a story you would like to share, please get in touch. Your story can help others, and it will help spread awareness.

We would also like to hear from people whose loved ones have been diagnosed with cancer. How did you cope with the cancer diagnosis? By sharing your experiences, you can support others in a similar situation.

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Thank you for taking the time to visit our blog and reading the post. We hope to see you back again soon.

stop cancer sign
Photo by National Cancer Institute on Unsplash

Until next time.

To help us raise money for The Royal Marsden Cancer Charity and the vital research they do, you can: 

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Thank you!

 

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