Vulva cancer

Affected by VIN (a pre-cancerous condition) or vulva cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

Mother has been diagnosed with Vulval Cancer

suze99
Posted by

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

kaznsas
Posted by

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

Siofra70
Posted by

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

2flamingo2
Posted by

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

Searchfamilies
Posted by

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 


Lot
Posted by

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

kaznsas
Posted by

Hi I’m so glad mum has had the op and I presume she is doing well. Again I feel the professionals have little information and knowledge on vulva cancer. I am all in support of research but I feel the funding goes to common cancers like lung and breast and I feel more funding should be put in to vulva cancer research. My mums cancer became aggressive suddenly and no-one could explain why and how the sudden deterioration happened. Only 2 weeks before at the Christie Manchester they told us they could manage and control it for years???? This was definitely false information. The only explanation we got was from the hospice oncologist who said that vulva cancer can become infected as it is often an open ulcer and this can result in death as infection hits the heart and this is what they suspected happened in mums case. Nobody ever knew what to expect when her prognosis was terminal . All we was told was it is unpredictable. Only time will tell. This is why ladies should be followed up at least every 6 months because the cells can become cancerous quickly and grow rapidly. The earlier it’s caught the better the chances. My mums gp  delayed referral and treated her for abscesses so by the time it was found after 16 mth delay and by that time it was 13cm in size . No op possible. I feel so let down but for your mum and all the ladies out there well done for fighting it and surviving it. My mum wasn’t so lucky but it’s good to hear the positive stories. Please please NEVER get discharged from your oncologists and push for 6 mthly checks for life. It’s your right to demand. I feel 12 mthly checks are too long because cells can change rapidly to go a year with not being checked. Good luck and lots of love to you all xxxxx

Lot
Posted by

So sorry your mom lost her battle kaznsas to this utterly AWFUL cruel cancer you must still be in shock i bet? x. My mom's recovering after this humongous op but very very long and uncertain road she's on now.  xx

kaznsas
Posted by

Hi lot. Your mum

Is a very brave lady and will fight this disease. I have heard so many positive stories of ladies that have overcome this operation  and gone on to have healthy future. Life is very uncertain . The journey ahead may seem scary but  just take it day by day. My mum always said whatever will be will be and whatever we shall face we shall deal with it. My mum was a true fighter right up until the end . I only wish we would have been referred earlier and her cancer may have been caught in time but it wasn’t to be. I believe that god called her home and it was her time to go. On a positive point your lovely mum has had the op and I’m sure she will fight hard and beat this. I wish you all the very best and a very healthy future. Love to you all xxxx

Nyree
Posted by

My goodness, so there IS information out there . . . I'm approaching 64, have had vulval cancer since 2015, and it now  is reluctantly responding to fierce chemo. I didn't know it often becomes a fungating ulcer - very few cases of vulvar  cancer in my area - my ulcer opened up in October 2017, and I've beenhaving it dressed daily by the community nurses  since December, as its position is so vulnerable to infection, but fortunately fairly high up in front. The painkillers I'm on are effective, but they make me so sleepy I can hardly function during the day!  

But I'm still here, and for as long as I am, I'll campaign  for the sharing of such information as already exists, and for the collation and sharing of much, much more.

Lot
Posted by

Hi Kaznsas, thank you so much for kind wishes - been quite a  battle for mom with this particular cancer it means a lot for you to give encouragement - if only ALL ladies could talk freely about vulva cancer as openly and honestly as other gynecological/breast cancers - hopefully In near future this will happen x ❤️

scared_daughter
Posted by

Thank you all for your kind words.   My mum also had ulcers which developed on her legs and then torso... The one on the leg grew very large....

When my mum was in the process of dying I noticed my mum still felt very warm even though she had not moved / spoken for days... One of the nurses explained that mum had an infection and this was causing a high temperature.. I wonder if that was actually the cause of how things changed so dramatically?!... All the doctors and nurses appeared surprised at how quickly my mum had shown a decline. It does appear that so little it known about this form of cancer.... I feel I have so many questions about the whole of mum's treatment and care prior to her diagnosis.

kaznsas
Posted by

Scared daughter. This is what exactly happened to my mum. As I approach mums 1st anniversary of her death the questions still go round in my head but I know whatever answers I got will not bring my amazing mum back and I know she won’t want me spending my life looking for answers that won’t make my grief any easier. Your mum will want you to go on with your life and remember her before this degrading disease. My mum deteriorated from hour to hour . I get frustrated with the lack of knowledge . Consultants could never answer questions we had. The palliative oncologist at the hospice was the only person to be honest with us and he said that the infection from the cancer will hit the heart and she will go in her sleep . And she did. Fungating cancers are open to bacteria and infection sets in quickly. Antibiotics don’t work because the cancer cells are resistant to the antibiotics..Basically it’s like sepsis with no treatment.  As long as I live I will never forget what that cancer did to my mum. She was housebound and bedbound for weeks before she passed. I remember the active funny and inspiring lady .... that’s my mum. Please remember your mum like I do. She is with you always. They never leave us. She will watch you from a distance as you move on with your life .i know exactly how you feel. Your not alone. Love lives on even when the overcoats gone. I wish you the very best in the future xxxxxx