New

Hi Gettingthereslowlyx and welcome to the group.

Would you like to tell us a little about yourself and where you’re at with the process? If you click on your name you will be able to add some information to your profile which can help you connect with others on the same path. 

Others will come along and say hello I’m sure, but also please feel free to add a reply to any of the posts you’re interested in. 

Sarah xx

Thanks x

Hi I’m in a similar possible.. I’ve just joined too…I was diagnosed last week had mri and hoping to hear something tomorrow as to way forward. It’s all a bit daunting as I’d never heard of vulval cancer. I have a tumour 3cm. How were you diagnosed?

eileen123

Hi I'm new to all this and can't find where to post on the screen of the vulval cancer forum. The page says 'post here' in Big letters but I just can't find where!

Hi Dannelchen and welcome to the group.

You have successfully replied to this post and I see you have managed to make a new post in the  “new here” section of the forum so I’m hoping everything is ok now? If you need further help, please let me know.

Sarah xx

Thank you Sarah.

I think I may be part of your Extensive Surgery Group in the near future as after a lower hemi vulvectomy recently I again have ' areas of concern'. Meantime I'm away to Barcelona for my 70th birthday. 

I have been told I may need ' extenuation (?) surgery if more lesions appear. Not only that, but because my SCC cancer is the result of 40,+ years of lichen sclerosis, my skin is like paper and cottage cheese due to all steroids creams I've applied over the years. I can't imagine how the huge wound would be covered. Frightens me to death.

Hi Dannelchen 

I’m sorry to read you still have areas of concern after your surgery, but I hope that you’ll be able to enjoy your birthday in Barcelona! 

I hope you don’t need exenteration surgery as although it saved my life, it was tough to go through. All those years of using the creams on your skin seemed to have caused so much damage-sometimes it seems we’re trading a solution to our problems for something else. 

I wasn’t sure what you meant when you said you were worried about a huge wound would be covered? Perhaps I could help explain that further if I know what you mean.

Sarah xx

Obviously I'm not sure what surgery you had exactly, but because my cancer starts on skin, they want to take a huge area of skin off and use skin flaps and grafts from all over. Even my anus would be removed. I fear it would be a I possible to get viable grafts and I would eventually die of infection

Ah, I understand and that’s certainly major. I have had my rectum and vagina removed, but everything was done internally and sewn up from inside, and I didn’t require skin flaps or grafts as I chose not to have a vaginal reconstruction. I have my 2 stomas and then an abdominal scar going from my belly button right down to my pubic bone. Other friends have had to have the flaps and grafts so this is the only reason I am aware of what can be involved.

I’m sorry to read how much you would need to have done, but this will surgery will only be performed if it can be done safely. It must be a huge and scary thing to contemplate, but maybe it won’t come to that for you. 

Sarah xx

Hi Sarah, I’am new to the group. I was diagnosed with Bartholin Gland cancer in Nov 2023. Have thought about joining the group often but have felt very anxious and alone with my diagnosis and wasn’t ready to discuss it. Surgery was not an option for me, my treatment was 25 Radiotherapy and 5 Chemotherapy with 4 Brachytherapy to follow. All my treatment has ended and have my 3 month post treatment scan in a couple of weeks. Feeling anxious about this scan as this will determine weather I will still need the surgery. Which scares me to be honest. Friends keep telling me to be positive which I am most of the time but with the side effects of the pelvic radiation and not been able to go back to work it is taking it’s toll. 

Britney x