Hello there - feeling anxious

Hi Jojomamabee and welcome to Macmillan and the vulva cancer group.

I’m sorry you did not receive a reply when you posted, but my response will bump your post again.

It’s hard to read in black and white you’ve had a referral for suspected cancer, but many referrals will not result in a cancer diagnosis. The referral however should mean that you are seen more quickly to start investigating what may be wrong.

Google may not be your friend while you are waiting for your referral as you don’t know yet what’s wrong, and it can be filled with stories which may increase your anxiety. I’d recommend sticking to reputable sources if you want to use the internet, like Macmillan and Cancer Research UK, where the information provided will be accurate.

Would you like to tell us a little bit about the reason for the referral? If others know what symptoms you are having, then it might encourage responses from others who have experienced something similar. My cancer was different-it was cervical-but I have been through treatment and surgery in this area, so I understand the anxiety you will be feeling right now. 

I hope you will get some more responses soon from others-this type of cancer is not as common as some, so the group can be less busy than some of the other support groups. However, members in the group have had both cancer diagnosed and pre cancerous conditions which have not developed into cancer, so there will be support for you here. 

I hope you’ll be able to let us know how you get on, and that you’ll find it helpful to be part of our community.

Sarah xx

Hi.   Would this be too much information?  

I discovered my left labia was black with pustules on it.  It totally looked wrong!  Obviously went into panic.  I’ve not been intimate for a long time and although I check my moles and breasts, never thought about my lady bits!  

I have had no itching, no pain, no discharge. Nothing.  And if it wasn’t for a pesky ingrown hair, I would still not know.  Weird how fate finds a way.  

LADIES CHECK YOUR BITS!!!  

I sent photos to the GP and got a same day appointment.  After the exam, she sent the referral and I have an appointment next Tuesday 07/07. I was so surprised it was that quick.  

I know Google is not my friend, I have a biology background in previous job role and I have know people with cancer, those who have lived and died.  So I am level headed about what read.  But I feel for armed is for warned.  And I’m one for wanting to know the possible scenarios which may happen (nope not been diagnosed with ADHD ).  

So it’s a wait for the appointment time now and see.  

It’s funny that I had a small cry and panic and then went into organising/reading up mode.  Maybe that’s my coping mechanism, the thing I can control?  

Hi again

Please don’t worry about too much information! Those of us with any kind of gynaecological cancer are used to it, and it may help someone else recognise what they’re going through themselves.

I can understand, especially with your background, that you’d have a need for information and that you would likely be able to cope with it in a rational manner. 

Good advice for ladies to check their bits! I think we’re so used to being encouraged to check our breasts regularly for example that we may not think about our other parts so much! I had symptoms of post menopausal bleeding with my cancer, so it was less easy to ignore, though I did try! 

I’ll put a link here to the information Macmillan provides for vulval cancer, which you may find helpful if you haven’t already seen it.

Vulval Cancer

We also have a facility to ask our nurses questions-they can give general advice but do not have access to our nhs records-and the link to ask them a question is here

Ask A Nurse

A quick appointment can be a shock, but will hopefully mean quicker answers for you, and it’s not long to wait. The mention of cancer can make us feel out of control, but I’ve found that answers and a plan of action helped me regain a bit of control and give me a focus to deal with whatever’s next. 

Sarah xx

I know how you feel, very frightening. What are you having done? What's your diagnosis? 

Any questions I'll try and help. I had a WLE to remove SCC vulva cancer on left side, plus 7 lymph nodes removed 5 on right 2 on left, in March 2026. Unfortunately had 2 infections and my stitches split. Still not completely healed, takes ages for me, hopefully you will be fine. 

No diagnosis yet.  But I’m one for wanting the knowledge!  I’ve been put on the fast track, so appt next Tuesday, possibly with a biopsy if they think I need it, tbf I think I do, lol.  But then again I’m no doctor.  

The fast track says results by day 30 and then if I need treatment that will be done by day 62.  I’m very impressed with the NHS tbf.  

The fact that I have never checked my lady bits and finding this was a fluke I hope if it is C then it’s caught early.  I’ve had no symptoms at all, that o know of.  I’m peri- menopausal so everything I put down to that. 

How did you find out you had it?  

Good you have a quick appointment, I would insist on a biopsy it's best way to find out if it's VIN or Vulva cancer. 

If you have no symptoms what did they say it might be? 

Mine started as LS then they said Lichen planus (had cream to put on but didn't go). Then said VIN3 had more cream, imiquimod (awful side effects & didn't work) then said SCC vulva cancer. A long journey but had op to remove it in March plus 7 lymph nodes to see if spread (luckily it didn't). Not pleasant but told C removed but VIN3 might return! 

My biopsy results took 5 weeks (Devon). Waiting is awful. NHS have been great but Waiting for results is worse part. Don't be scared to phone hospital if you don't get results by 5 weeks. Ask consultant which number is best to call to check. 

Until you get biopsy results not much you can do. Biopsy is a bit painful but squeeze something and chat to the nurse to distract you.

It is worrying and my anxiety was high. 

Keep us posted. Lots of lovely ladies on here know how you feel. Including me. 

Thank you so much.  

I looked up LS thinking it could be that but the rest of the area is fine. Just a massive black bit on the labia, thank you again.