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

scared_daughter
Posted by

Amberruby

Please get all information from consultant write your questions down and write answers down i dont believe my mum was given all options as radiotheraphy just made her last month so painful and she was so distressed.

I wish you mum a speedy recovery if i can help in anyway please ask .

Anya x

Thank you.

It is awful what happened to your mother. I am so sorry that she had to go through that.

Sending you massive hugs. x

Scaredaf
Posted by

I was told this too! Told could be as soon as 3 months and I have my first 3 month review on May 4th, then every 3 months until....... Hate the feeling that I will never be free of this and at 55, I hate that feeling!

Anje

Amberruby
Posted by

Im a daughter who mum had vulva cancer ?


Eclair
Posted by

Dear SD - I was diagnosed a few months ago with vulval cancer. I have suffered with LS since I was 3yrs old; now 47yrs old. It presented as an ulcer (looked nasty) and has since been staged as a 1b. I have just had a vulvectomy and am awaiting sentinel lymph nodes procedure. Apt is Weds for results of CTs and MRIs and then treatment plan. Please try not to look at the internet (including images), stay in the Macmillan site. I ordered their booklet on vulval cancer which is free and full of all the information you need. Best Of luck to your Mum and let's us know how she gets on. 

Kirkhaj
Posted by

Sounds just like me... at the hospital tomorrow for the date of my sentinel node removal... can I ask what depth your cancer was ?

I am so scared as I have an 11 year old daughter xcc

Eclair
Posted by

Hi, don't be scared, just remain positive as the mind is the greatest healer. I'm not sure how deep it was, I'll find out on Weds as I'll ask and let you know. I do remember coming to in post-op and the surgeon said it was deeper than they thought. I also have an 11yr old son; it can be scary but I'm grateful that they found it early.  Good luck for tomorrow and let me know how you get on xx My vulvectomy was on the 27th March and it still hurts

Kathy321
Posted by

I am going to Hospital on Friday for my operation. I was diagnosed with stage 1b vulva cancer last month. I am having a triple incision vulvectomy where they take some of the vulva and some lymph nodes from each groin to check for cancer. I will be in 3 days and they said 6-8 weeks off work. I am dreading the whole process. Please can you let me know how painful it was after and I am also worried about getting lymphedema. Apparently 5 in 10 people get this.

Thanks   

Kathy321
Posted by

Hi Angela

Mine sounds the exact same as yours. Stage 1b and had the triple incision vulvectomy on 24th November. Had some infections and has been painful. Had the dreaded drains removed yesterday and I am dreading getting lymphedema. You said that you thought you were starting with it, did you end up getting it and wants it like to live with ? Do you find it effects your day to day life. Hope you don’t mind me asking.... just be good to know what to expect should I get it. 

Thanks

Kathy 

mummab
Posted by

I do have some lymphoedema but it is manageable.

But more painful than I had imagined. I still have numb inner thighs as well from the surgery.

Cos of the way our house is a tidy 2 up 2 down Terrace I spend a lot of time upstairs sat on the bed usually crafting.

So my legs are up most of the time but if they are down for any length of time walking, standing or just out and about they do swell more

I saw the lymphoedema team here in Huddersfield and have 2 pairs of the hold up stockings but have found some of the supermarket support tights and knee highs can help as well.

Was told not to shave my legs using a wet razor or use my beloved epilator cos I was getting ingrown hairs  and to moisturise at least daily.

And to report any signs of cellulitis as soon as poss.

Hope you continue to recover and that your results are clear.

It is hard to come to terms with but I’ve tried to be positive and succeed most of the time.

Take care

Angela xxx

kaznsas
Posted by

Hi Amberruby. My mum passed away with the same disease in feb 2017. I just want you to know your not alone in your frustration. We too was never told the severity of the illness. I truly believe the professionals do not know enough about this dreadful disease. I’m so sorry our mums became a victim to this terrible cancer. I wish you well and hope your lovely memories out shine the nightmares of this awful journey we went through . 

Searchfamilies
Posted by

I also was diagnosed with Lichen Sclerosis after a biopsy in 1999 was told this is a pre cancerous condition told to use a steroid cream that was it

Earlier this year it became more of a problems was given a stronger cream after a while no improvement

Gone back to my GP who rushed an appointment which was at the hospital to see a gynaecologist who had me in the following week for a biopsy

Just got the result which is Vulva Cancer will be having a MRI in the next 2 weeks then surgery if the MRI showing it has not gone in to lymph nodes Will just have the lump removed otherwise lump & lymph nodes removed 

No chemotherapy radiation or drugs so I was told at the hospital does this mean there is less to no chance of it coming back or should I be having some treatment I am 63 

I do wonder why I was never told to have a check up every so often 

kaznsas
Posted by

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. 

runefinder
Posted by

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

kaznsas
Posted by

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

scared_daughter
Posted by

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.