Mother has been diagnosed with Vulval Cancer

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!

Im a daughter who mum had vulva cancer ?

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. 

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

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

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   

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 

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

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 . 

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