I feel it is now time to share my story. I was diagnosed with VIN 3 in 2017 in the Dept of Dermatology at Amersham Hospital and then referred to the Gynaecology Dept at Stoke Mandeville Hospital where after biopsy VIN 3 was proven. In April 2018 I had a procedure where vulva right side wide excision and left vulval punch biopsy. No evidence of cancer just long term monitoring.
As my systems came back I was then referred to an Oncology Consultant at the Churchill Hospital in Oxford. I then had a Vulcectomy, Distal urethrectomy and V-Y flap reconstruction in February 2019. Recovery was about 5 months. My symptoms came back in June 2020 and again more surgery in August 2020. Recovery was about 6 weeks and I felt great until around April 2021 when I began to experience pain in my abdomen. Was seen by Consultant who ordered an MRI scan and biopsies. The MRI showed that I have a tumour pressing on my bladder and have vulva cancer. Have also had PET CT scan. Biopsies were taken yesterday and now awaiting results which will take a couple of weeks. Further treatment will then be discussed. I am frightened now which I guess is normal.
I don’t think there is enough awareness or information about this cancer out there and if there is anything I can do about it I will. By the way I am a young 67.
Hi . Can I offer you a warm welcome to the Macmillan Online Community. I’m sorry to read about your diagnosis but I’m glad you’ve found us.
My cancer is different, but a cancer diagnosis of any kind makes us ask lots of questions, causes confusion, stress and probably emotions we’ve never experienced before. We all agree, the endless waiting for tests, results and Consultations is so debilitating so to be able to talk to other people who are in the same situation will help you get through this.
The Macmillan Community is organised into dedicated support hubs. You’ve joined our Vulva cancer group, this will be a good place to meet up with others making the same type of cancer journey. I've tagged the Community Champ chellesimo, so she'll be along to welcome you as well.
It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. I would just copy and paste this, your first post as it's so informative.
The Macmillan Support Services also provide lots of information, support, financial guidance or just someone to listen.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
Sending you welcoming hugs B xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
Hi Pizza, I am so sorry to hear about your recent diagnoses. You have been through a lot already, but I am not surprised that you are frightened by this latest diagnoses. The waiting for test, and biopsy results is definitely the worst bit, with the fear of the unknown and what may lay ahead.
You are right, there is not enough awareness out there about this type of cancer. I have a different type of cancer, but my medication has caused severe vaginal atrophy, so I can empathise, so I have come to champ this group, Thank you for sharing your story, it really does help others to know that their are people going through a similar situation.
Good luck with the biopsy results. Please let us know how you get on x
Hi Pizza,I am sorry to hear this. I am not surprised that you are frightened, the fear of the unknown and what is ahead will seem terrifying for you at the moment.
Your team at the hospital will work very closely with you, and they will explain every thing to you. At each treatment they will ask how you are feeling, please be honest with them, as they will be able to help you and advise on any side effects you make experience.
Wishing all the best for with the treatment. x
