Vulvar cancer

Hello Gill, I am so sorry to hear about your diagnosis, you have come to the right place to get love and support.  I had my vulvectomy in June 2023, when I was 73 years old.  I know how scary it is.  My worries and fears and ‘what if’s’ were not as bad as I feared.  I am also in the U.K.

Fortunately all my cancer was taken away and the surrounding tissue and lymph nodes were clear so I did not need any chemo or radiotherapy.  It took me longer than anticipated to get back to full strength and walking distances but made slow and steady progress.  Taking about 2/3 months I suppose.  The main thing is only do short walks daily, either indoors or outside.  Rest when your body tells you, for it will.

My main worries were how do I keep the area clean, especially after going to the loo.  I bought a Peri Bottle and some disposable cotton cloths, both from Amazon, and can highly recommend these.  I still use them now daily to refresh and keep clean.

Please feel free to message with any queries or worries, don’t feel alone as we are all here for you.  Keep in touch and let us know how you are doing.

Kind regards, Elaine.

Thank you so much for sending a message.   I’m 70    I’ve had Lichen Scherosis for 15 years and one of the things is there is a 10per cent chance of cancer.   My partner seems to be not taking it seriously even suggesting we could pop to Cornwall so I don’t have to worry about   My surgery is 31st July and I’m having a couple of appointments before hand 

Are you fully recovered? 

peri bottle not heard of that    Already brought the cloths   I will look at them 

thank you once again    I feel so alone with this but it’s lovely to hear from you 

Hi Gill, you are more than welcome.  Always here for you.  I still have minor irritations down there, due to clothes rubbing, skin touching when walking etc.  My surgeon suggested using Hydromol to wash with and moisturise the area as my scar tissue was dry.  It does help.  I have to have regular check ups for 5 years after the op.  Am now on 6 monthly appointments.

Perhaps a short trip to Cornwall would help, but the worry will still pop up.

I am in Hampshire and had my treatment in Southampton.  

I really can’t go Cornwall 

I’ve had physio today, next Monday and right up to week of op    Making sure my heart is as best as it can be 

next week also meeting anaesthetist on 16th 

Monday 28 blood appointment 

then got another appointment with consultant (as apparently she likes to meet you before op)

I also have a son and three grandkids and want to see them beforehand 

and trying to make sure washing,ironing and housework up to date etc

im sure I’m giving myself too much stress 

gill 

Yes, all the pre op appointments certainly keep you busy. 

Elaine x

Hello Gill, My vulva cancer ended up being 2.8 cms and they took a clear margin but because they thought it was stage 1 and 1 cms I had to have a second operation to remove lymph nodes for testing.  Which came back clear.  I had WLE.

They told me not to do any housework etc for 6 weeks or go back to work. 

It is best to get the air to it so I had longer length nightdresses and sat in the garden, no underwear.  Every hour I would get up and walk up and down the garden to make sure I was exercising.  My Macmillan nurse advised that every time I used the loo to use the shower head and run water on the area, then I was patting dry with absorbent tissues (very strong) that I got from the hospital and you can buy from Amazon.  I can honestly say I felt so much better the day after the op especially when my surgeon did the rounds and was very confident that he had got everything. 

I stopped taking painkillers when I got home which was 5 days after my operation. I was taking antibiotics though as a precaution against infection.

I never had any chemo or radiation.

My operation was in August 22 and I was 61.  Started off on 3 monthly checks, second year was 4 monthly check, third year 6 monthly checks and when I go at the end of this month that will change to yearly checks for 2 years, fingers crossed.

Hope this helps, All the best for the 31st July.  Please let us know how it all goes and if we can give you any tips on what we did and what helped us please let us know.

Regards

Sharon