Diagnosed last week

Hello Eileen, you'll feel much better when you've got a plan, take one day at a time, try to take someone with you when you see your Consultant. You should be given access to a gynae cancer nurse, they're amazing and can help you enormously.  Keep your skin well moisturised  it helps healing.  Buy a sitz bath or a peri bottle, or both, to help bathing afterwards.

I'm now 76, 2 years on from my treatment, in remission, grateful for every day and the still anazing NHS.  I see my gynaecologist every 6 months and my dermatologist every year (my cancer was a result of erosive lichen planus).

Good luck, if you ever want to know anything else, get in touch  I'm happy to help.  This site is anazing  there's also a vulval cancer group on Facebook which is great too.

Sandyx

Hi eileen123 and welcome to the p group.

It can be very difficult when you are first diagnosed-everything can seem a blur with appointments and so much information to take in. It’s good that you’re having your scans done quickly, and all the results will fo to the MDT ( multidisciplinary team) to formulate a plan of action. This team is made up of the medical professionals involved in your care-oncologist, radiologist, cancer nurse specialist etc.

The unknown is something a lot of us struggle with at the start, and especially when we have not heard of the cancer for which we have a diagnosis. If you click on this link I have made, it will take you to the Macmillan booklet on understanding this cancer which you will hopefully find a very useful resource-

Understanding Vulva Cancer

I hope some of the other ladies will be along soon to say hello, and please feel free to ask any questions. I hope you’ll let us know how you’re getting on.

Sarah xx

Hi Sarah, yes I got the booklet, lots of info. I’m a survivor of breast  cancer diagnosed 2018 so when you have been through it I think you know too much! After I sent my message I heard that the MDT team will be meeting next Wednesday to discuss my mri scan with a plan of action. So I will get a call next Wednesday. That has really settled me knowing it’s less than a week away.

Are you a survivor or currently having treatment .. am I allowed to ask you that?!

Not too long to wait! I’m sorry to read you’ve also been through breast cancer and are now being faced with this. But they are very different cancers and the treatment will be different. Still, I’m sure you’d rather not be going through this again.

I was diagnosed with cervical cancer in 2018, and had a recurrence in 2019, so I guess I’d be called a survivor! I haven’t had treatment since 2020- you can read my story if you click on my name if you’d like.

Adding details to your profile when you’re ready can be really helpful for others looking to connect with those who had similar treatments etc. it’s something to consider if you’d like to. 

Sarah xx

Hi sorry I've not been in the group for weeks,  my health took a turn for the worse. 

I finished chemo and radiotherapy on the 20th March. I rang the bell lol

On the 22nd March I was rushed into hospital with breathing problems,  at first they thought it was pleurisy,  I couldn't pass urine so they tried to cathartize me twice, but because I was very sore and swollen they couldn't,  forward 2 days, had a doppler scan on my leg to find I had loads of blood clots in my leg, the following day had ct scan on my chest and they found loads of blood clots on my lungs,

4 weeks later I'm feeling a little better. Still have problems peeing with lots of pain, and really smelly discharge, , I'm hoping that maybe someone had had the same problem as me when urinating and discharge, 

One good piece of news is that I see my oncologist on the 29th of this month to see if the tumour has gone.

Love and best wishes 

Susan 

Hi Susan

Oh my, you’ve been through the mill for sure-I’m so sorry to read you’ve been so unwell. I haven’t had your issue with not being able to wee, but I did have an embolism due to the chemo I had, so I understand how scary that it. I only had one clot in my lung, which burst, so wasn’t as unwell as you’ve been. But I was on blood thinners for 5 or 6 months. 

I hope one of the other ladies can identify with what you’re going through with the smelly discharge and pain with weeing, and can offer some reassurance. It’s good you don’t have long to wait to see the oncologist-make sure you get answers to all your questions. Do you have any post treatment scans scheduled or is it a bit early for that? I remember my post treatment mri after chemoradiation was 3 months after my treatment finished.

Good luck with your appointment!

Sarah xx

Hello Eileen, I am so sorry to hear that you have been diagnosed with cancer of the vulva, I had never heard of it before my diagnosis last year and was told it is extremely rare.   Mine was a melanoma, which I assumed that it was caused by sunburn, but no part of this part of my anatomy has seen the sun.  After the biopsy it was 8 weeks until I got the results, had a CT scan and saw the surgeon.  Had a wide excision radical vulvectomy, bilateral lymph node removal.  Was in hospital Tuesday to Saturday.  On the first follow up with surgeon he told me that all the cancer was out and surrounding tissue was clear, the lymph nodes were also clear so he didn’t think it was necessary to have any further treatment.  Have regular check ups for 5 years.  

The cleanliness of the area was my biggest concern but managed ok by using a Peri bottle to wash and disposable cotton cloth to pat dry.  Sitting on a cushion helps and still does 10 months later.

Once you receive a plan of action then you will know what happens next.

Please ask if you need any 

Hello Susan,

So very sorry to hear of all your setbacks, you certainly have been through it.  Glad you got to ring the bell though.

I didn’t have any trouble with peeing, apart from it shooting in all directions.  Gone are the days of just squatting over public loos, it would end up all over the floor, down my legs and in my shoes!!! (Sorry but I hope you don’t think me flippant )

Using the peri bottle at the same time as having a pee may help you feel easier, although you may already do this.  
Hope you get food news on the 29th.

Sending hugs,

Elaine

Hi hun. Been using the peri bottle but still hurts, I got polymem from when I had the radiotherapy so I've put some in between my legs to see if that helps. Hopefully I'll get some good news this time next week,  I've stopped squatting due to exactly same has you lol

Will keep you posted on my appointment next week  x

Hi Susan,

I hope you get good news on the 29th too. I have another follow up on Friday.

Take care xx