Mother has been diagnosed with Vulval Cancer

Hi. Unfortunately my mum passed away from vulva cancer in feb 2017. My mum had stage 3c when it was diagnosed due to a 16 month delay in referral from our go even though she had a precancerous condition caked VIN.  I would certainly question your oncologist about after treatment. My mother had a 13 cm tumour on the bartholin gland and radiotherapy over 7 weeks resulted in the tumour no longer being present. Because my mums was advanced and she had the maximum dose possible of radium we were hopeful that it had been cured. However on mums 1st three monthly scan there must have been left over cells which resulted in mums cancer being terminal. I suppose I’m saying that if your at a lower stage and an op can remove I believe radiotherapy can clean up any left over cells and certainly worth discussing with your oncologist. This cancer does carry the risk of reoccurrence at any stage so I think radiotherapy should be used to clean up the area/margins I wish you the very best . Keep strong and positive. My mum was a fighter and I’m sure if she had been referred earlier and she could have had an op she would be here today. Fingers crossed and I’m sure you will be fine. 

Oh  kaznsas 8m so sorry for your loss. It's terrible that your Mom was left so long before seeing a specialist! I had a RV 16 yrs ago and full node removal.  I know this saved my life. I have had many ops to temove vin patches since . Last one Oct 2017. 

I do wish gps would take these signs of cancer forming more quickly. 

Sending you lots of love xxxx

Hi. Thankyou for your reply. It’s so nice to hear positive stories. I’m so glad you had a positive outcome. Being monitored closely is essential so when you have these flare ups they can be treated. It is when there are delays that it’s devaststing. My mum was 66 and very active. Had laser for VIN as far as back as 2001. Was discharged by oncologist to gp in 2009. Problems started in 2014. Gp said it was atrophic vaginitis and bartholins abscess... treated  for this until nov 2015 ... went to 3 go,s . They all had the same view.  It came to ahead when I took her to the A&E at the city hospital where the oncologist was based and refused to leave until someone looked at mums swelling. She was seen by oncologist immediately and went for examination under anaesthetic and they found cancer of bartholin gland and spread to lymph nodes and pelvic wall. They all tried the best to cure her and she fought with determination but it became very aggressive and she lost her battle. Gp,s need to listen and ladies never let your oncologist discharge you to go care after 5 years. Ask them to continue 6 mthly reviews for a life time. It’s reassuring to know you can ring for an appt if you have any new symptoms. This cancer can and is beaten by many ladies. Good luck and I wish you a healthy long future  xxxxx

On Friday my lovely mum lot her battle with vulva cancer.... Last Sunday we were told my mother was dying ( a shock to all the medical staff as they had felt she had longer in her). My brother and I were with her all week day and night, sleeping on the hospital floor. We brushed her hair, massaged her hands, arm and feet and rubbed water onto her lips... We slowly watched her wilt away.... It was horrific- seeing my lovely, kind, bubbly, energetic and inspirational mum become more and more gaunt.... She was in a coma-like state from Sunday evening.. No movement, no sound other than the awful rattle of her breath.. I had no idea that it would be like this... It felt as if you were experiencing her every organ shutting down.  On Friday at 4.40am she took one gasp and that was it....She was only 69.

The feeling now is so odd..... I feel so empty...In the hospital I felt like I was in a little bubble with my mum and then once she was pronounced dead it felt like the expectation was just to get on with life... As I took down the photos from the table, packed up her things and drove away from the hospital I thought how can this be?! Just over two weeks ago I was taking my mum Christmas shopping.. How can she no longer be here?! This weekend there have been so many times I have thought 'I will have to tell mum this' or thought she would come down our stairs at home... I feel lost...

It also surprises me how practical you have to be after experiencing such loss... Registering death, Organising funerals, clearing out her home.. I just want to crawl under the covers and cry...

It all seems so unfair- My mum had always looked after herself.. she exercised, ate well, never smoked and rarely drank...Then some people abuse their bodies and live much longer.. Cancer is such a cruel disease.

My mum was only diagnosed in March / April... She had known something was not right for a while and had been under a consultant for dermatology for a skin condition (lichen planus / lichen sclerosis) for many years before but nothing was picked up.

If you suffer from vulva cancer or think that something is not right question, question, question... I feel mum was let down by a lack of knowledge on this condition and that prior to her being moved to gynaecology in  March many early signs of this cancer were missed.

Best wishes to everyone for healthy future and beating this awful disease.  

I am so very sorry to hear that your lovely mum has passed away. I can't begin to imagine how you and your family are feeling at the moment.  I hope in time you will be able to look back at the happy times you shared. 

Sadly vulval cancer seems to be affecting more and more ladies. Lack of awareness both by the public and health professionals alike often means a delay in diagnosis which then impacts on treatment options and survival. 

I'll be thinking about you and send you my heartfelt condolences. 

Love

Sue x

Scared daughter.... I know exactly how you feel . List my mum in feb 17 . My mum was just like yours... full of life... had everything to live for... I believe that vulva cancer needs to be researched more. Professionals do not know enough about it. We was told that the cancer could be managed and kept under control but yet from oct 16 to feb 17 she deteriorated rapidly. In America they seem very well up on vulva cancer and I was e-mailing a forum over there and it seems vulva cancer is only slow growing in the beginning when the cells start to change. As the cancer grows the change of cells grow rapidly and the cancer becomes very aggressive and because the cancer can become fungating then there is high risk of infection that gets in to the cancer. I felt very let down because all through mums journey we were led to believe she was doing ok but like your mum suddenly everything changed. Our mums are now free of this dreadful disease and they are now at peace and will watch over us through our journey in life. When my mum was dying she told me some words of great comfort. She said where I am going is peace and there is no suffering but I will never leave you. Even though you can’t see me hold out your hand and I’ll be there. She said life is about challenges of good and bad and even though I cannot take the rough times away I’ll be there to guide you through and she is. They never leave us.  Please be strong and your mum will help you through your grief. My mum is my best friend. I miss her terribly but I know she is with me. Take time to grieve. Time does heal. It will get easier. And remember she is never far away. Take care xxxx

Hi kaznsas,

I came across your message just now and felt I had to comment. I lost my Dad in July 2017 to bladder cancer and just found the words your mum said to you about always being there so comforting. So, thank you so much for posting.

My condolences to you on the loss of your mum, I hope you do feel her around you.

Sympathies also to everyone else who has lost a loved one.

Siofra x

thank you kaznsas

your post was beautiful and made me cry. I lost my lovely Mum last summer and have recently been diagnosed with aggressive cancer. I am still grieving her loss but like you say I have learned that she is with me and comforts me and holds my hand and one day I will be very happy to be with her again.

thank you

flamingo

I am so sorry for your loss 

I also got diagnosis with Lichen Sclerosis in 1999 & was only told that it was pre-Canerious but it may never devolope as I have had a hysterectomy I never had to have swabs done either 

So apart from cream to use it had never been checked & on 29th been diagnosed with Vulva Cancer as middle of last year it got to the point cream wasn't working 

So as well as questions get any pre-cancer conditions get it checked regularly as I just been plodding along doing nothing about it 

Wishing you all the best as you face the lost of your mum 

Mom diagnosed 4 yrs ago at 74 saying if you live 20 years after having cervical cancer you are at risk of vulva cancer as side affect!!!! No one ever told her that and no Dr ever checked her. Consequently had to have radical vulvectomy and now pelvic exenteration but still alive