The future after treatment for vulva cancer

Hi and welcome to the online community although I'm sorry you've had to find us.

I see that you have already joined and responded to some posts in the vulva cancer group and I'm sure if you start your own thread over there you will get replies from others who understand what you've gone through.

Clicking on the link I've created will take you to the group where you could copy and paste your post from here into a new discussion there by selecting 'start a discussion'.

Wishing you all the best

x

Hi

I am not surprised you’re finding it a struggle to find others who’ve had a similar treatment and are a similar age. It’s a rare cancer and frankly you’re much too young for this. I am really sorry to hear about what you have been through. 

I wonder if you’re aware of The Eve Appeal? It’s a smaller charity that funds research into gynae cancers and runs the nurse-led free to use Ask Eve gynae cancer information service. Karen helps answer the phones. She’s younger than you and has been through cervical cancer. She’s not a nurse but is absolutely lovely and completely unshockable. Tracie Miles, the nurse on the helpline, is similarly a gem and a mine of information. Do give them a call. 

https://eveappeal.org.uk/supporting-you/ask-eve/

Xx

Hi Daloni

Thank you so much for this- I have heard of The Eve Appeal (through desperately trying to find anyone who had had a similar experience!!) but I didn’t know they offer those kind of support options so I will definitely get in touch.

Im starting counselling tomorrow through Macmillan which I think will be really beneficial but I think it’s going to be really important for me to speak to ladies which have gone through something similar and as you say, someone I can speak really openly to about it all! 

Thanks again, Laura XX 

Hi

You are more than welcome. I hope the counselling will help. You have a lot to come to terms with and it’s going to take time so be gentle on yourself. And you’re right - speaking to someone openly can really help. 

I was about to post a link to the group diagnosed at a young age. But I see you’ve joined already. 

Hang in there. You’re doing all the right things

xxx

Thank you xxx

Hi Laura, 

So sorry to hear about what you are going through, i had my diagnosis on Monday for the same and i had a CT and MRI scan yesterday and am awaiting results, i am petrified my mind is a haze , how long after diagnosis was it until you had your op and how are you feeling and what have you been told about recovery , sorry to bombard you with questions.

Love and prayers 

Nicky xxx

Hi Nicky

More than happy to answer any questions you might have. 

Really sorry to hear about your diagnosis, not surprised you feel like you’re in a haze as you only found out on Monday. I hope things move quickly for you in terms of results from scans etc so you aren’t having to wait too long.

i was diagnosed on 3rd Jan this year and then didn’t have my main surgery until 21st March-but I had additional biopsies in between as they wanted to check exactly how much of the vulva they were going to need to remove and if I would need my lymph nodes in the groin removing too (which i did)

They said a couple of months for recovery in terms of Beijing off work. I’ve been off for longer than that but I’ve had to have an additional bit of surgery and had a few infections (all these things vary from person to person and mine were very much linked to the lymph node removal-I’m assuming you don’t know if you’ll be having that yet?) 

I’m feeling ok at the moment - I think mentally it took it out of me more than I expected so be prepared for that and make sure you use any support you have. 

Do you have access to macmillan through your hospital? I found that to be a great help.

I hope you’re as ok as you can be and as I said, always happy to answer any questions no matter what they are! I know how it feels to be so unsure as it’s such a rare cancer so if I can help in anyway I will.

be kind to yourself xxx

Hi and welcome to the online community

I'm sorry to hear that you were diagnosed with vulva cancer on Monday. It's quite normal to be feel as you do after having a cancer diagnosis and you might find taking a look at this information helpful. Most people find that once they know what their treatment plan is they feel more in control and less scared.

Could I point you in the direction of the vulva cancer group where you can ask questions, share experiences and get support form other ladies who are dealing with this.

To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then post a question or introduce yourself after selecting 'start a discussion' and respond to existing posts by clicking on 'reply'. 

When you feel up to it, it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x