Dare to be Vulva Aware – Women speaking out

MY VULVA CANCER JOURNEY – by Lyn Ellard

January 2017 I had a L) Hernia operation, all went well and recovery was good. In February 2017 I developed an itchy burning in what I now know as the Vulva area, I went to my GP. on another matter but told her about the symptoms I had, she asked me to do a urine sample which I did. A few days later my GP phoned me to say I had a bladder Infection and she would leave a prescription at the reception desk for me to get anti biotics and some Canesten cream. The antibiotics and cream did help for a while, but the itching and Burning still continued.

Over the months each time I went to the GP complaining of the same symptoms only to be given script for Canesten cream which I would get over the counter at the chemist attached to the Medical Centre. Sometime later in the year I noticed on the R) side of the Vulva it was very sore and felt like there was an open sore, sometime it would bleed.

Being a women and 76 years old I took the word of the GP that it must be a bladder infection and just continued on, I would use Vaseline, Canesten cream and yoghurt to ease the pain especially when I had to go to the toilet.

Never in all the times I visited my GP and complained of my systems did she ever suggest an examination of the vulva area, over the summer months it became so painful that if I was home I would go without snickers as it was comfortable without them.

It was in March after I returned from a holiday that it got so bad I could not take any more of the pain, and I had a feeling it was not just a bladder infection it had also started to swell up above the hair line of the area.

On the 29^th March I went to see a new GP at the same medical centre as my usual GP was not available, she did examine me, said the vulva area on the R) side was ulcerated and not a good colour, had to do a urine test and she also took swabs.

Went back for results on the 4^th April 2018, the results were all ok, but she gave me a referral see a Gynaecologist at Murdoch, the Gynaecologist phoned me to say he was referring me to a Gynaecologist/Oncologist.

On the 17^th April in the evening I developed a lump in my R) groin and it was painful, in the morning the lump had moved up to the top of the groin. I made an appointment to see the new GP. She took one look and sent me to Fiona Stanley Hospital.

At the hospital they did an Ultra Sound and CT Scan. As I wanted my own surgeon I had to be transferred to SJOG Hospital Murdoch. I was admitted there on the 18^th April. While I was there they did more test and also did a biopsy of the Vulva area. I was a patient for 4 days.

While in the hospital the Gynaecologist/oncologist visited me and an appointment was made to see him in his rooms on the 4^th May. I received a call from the Surgeon to come and see him still not thinking much about it.

I saw him on the 26^th April. My daughter Amanda came with me, he was very nice about everything, he said the results from the Biopsy was that I had R) Lymph node cancer and he said they think the Primary started in the Vulva, many people asked me how I felt, I think I just had a numb feeling and I let Amanda ask all the question she was and has been my rock over this time.

I visited the Gynaecologist/Oncologist on the 4^th May, he did a biopsy under a local anesthetic in the surgery it was very painful but it needed to be done quickly. He told me the vulva area was the primary and the R) Lymph Node area was the secondary. Because I already suffer from Lymphedema he was hoping to only remove some of the lymph nodes.

I was admitted to SJOG Murdoch hospital on the 14^th May. I had a R) Vulva operation where they removed all the Vulva. All the R) lymph nodes had all joined together to form a ball so I had to have all R) Lymph Nodes removed, I became very upset and angry about it all especially with the G.P. as had she checked it out sooner I may not have had to have such major surgery. I spent 13 days in hospital. I was told I would have to have chemo and Radiotherapy. After coming home from hospital every morning for 5 weeks I had to have Health Care then Silver chain to come and give me a blood thinner injection into the stomach and a flush for the vulva area.

On the 13^th June I had a PET scan this had to be done before I started my Chemo/Radiotherapy treatment, it was done at SJOG Hospital Subiaco.

I started my chemo on Monday 2^nd July, I have to have chemo at SJOG Hospital Murdoch every Monday for 6 weeks. Tuesday 3^rd July I started my Radiotherapy at Fiona Stanley Hospital this is every day (Monday to Friday) for 6 weeks. During the Radiotherapy some days I just did not want to go and had to push myself through the treatment, it was a very stressful 6 weeks.

It was after the 4th treatment that I became very unwell in the evening, Tom (Husband) drove me to SJOG Murdoch emergency department, I was admitted to hospital for 4 days with a chest infection, I had to still go to my Radiotherapy and that week I only missed 1 appointment. I am still struggling with it all and have my angry moments towards my GP but getting better at it all.

On the 8^th October I went to SJOG Hospital Subiaco for a final PET and CT scan.

Went to S.JOG Murdoch on Wednesday 10^th October for my appointment with the Chemo Specialist o get my results from the PET scan. What a wonderful feeling when the Specialist told me all was good, feeling so blessed and happy with the results. I have a small node on the lungs but the specialist is not concerned at this time. I will go back to see him in February 2019 and have a CT scan before I see him. I feel a heavy load has been lifted and I can now look forward to a happy life ahead.

My advice to all women, you have the right to ask for an examination or a second opinion. If by writing my story I can save one person from what I have had to go through it is all worth it.