Vulval Cancer?

Hi Yvonned, I’m so sorry to hear what you’ve gone thru and again you’re waiting on another agonising wait on biopsies and further appointments. My mother has had lichen schloerosis for years now and I’ve had vulva cancer treated last November with bilateral lymph node removal. I’m glad to say that they removed all the cancer and no further cancer was found in my lymph nodes that were removed. I was lucky not to require further treatment other than 4 monthly check ups. I’m keeping my fingers crossed for you and hope you keep well. Lee chatting on here as I’ve found it helps as everyone knows what you’re going through and are really kind and helpful if you have any questions about it xx

Hi Deb

thank you. I am just wishing the days away waiting for a date for biopsies. How were yours taken local anaesthetic or epidural. He has said epidural for me and I am dreading it. If I am numb from waist down will I have bladder leaks etc? So worried. Thanks

Hi Yvonne, I am very sorry to read what you have gone through and now in that waiting game to have a date for the biopsies and then the results.  I had vulva cancer back in April 2020 and had two biopsies done both under local anaesthetic. I Had a WLE and then another op to remove lymph nodes and  have just been put on 6 monthly checks. The waiting for these appointments are the worse I think, do you have a cancer nurse? Mine referred me to the complementary medicine team and they gave me an inhaler ( like a Vicks one) to use when I could feel my stress levels rising and it really helped me.  It had ylang-ylang, lavender and cedar oil in it. Something else which helped was meditation, if you go on YouTube type in Neil Browne ( he’s in charge of the complementary medicine team at Bart’s Hospital Trust) and he had done 4 meditation sessions they helped me sleep and distress when I was waiting for my op, which ended up being put back over a month.

Hope this helps, and wishing you all the best. Remember this group is always here for you.

Thank you so much. I will take a look. Hope you are ok. Xx

Hi Yvonne,

all good here was so pleased when I had my 4 monthly check up and my consultant said we can go to 6 monthly check ups. 

Talk to the Macmillian nurses on this site, they are so knowledgeable and it they can’t answer you they can point you in the right direction. They certainly helped us with a family member and gave us great advise.

Please don’t stay in pain until next week contact your consultant or gp and they can prescribe something for you x

Thank you so much. All the best to you too xx

Dear Yvonned, I am so sorry to hear of your previous diagnosis and now your worries about your biopsies and fears.  I wish I could give you a hug.  I was diagnosed of vulva cancer last year and hade a radical vulvectomy and bilateral lymph node excision.  Fortunately all the cancer was removed and no further treatment was necessary.  I have check ups for 5 years, currently every 4 months.  My biopsies were taken by local anaesthetic.  
Please contact your Macmillan nurses if you have one and they should be able to help you.  Also speak with your GP and ask for pain relief.  
I can imagine your anxiety is through the roof, my GP prescribed pills to calm me down.  I was glad to take them.

Please message me or ask any questions.  There will always be someone here to help.xxx

Hi

just seen your reply. Thank you. I had three biopsies taken on Thursday. Not a great experience and still feeling uncomfortable. How long did you wait to get the results? When they told you it was vulval cancer what happened next please? I am so worried at the moment. 

Hello again Yvonned, 

I was worried waiting for my results, needed meds to calm me down.  It was 8 weeks before I got my results, which was far too long in my opinion.  If you haven’t heard anything 4/5 weeks time then I should ring your consultant.  I saw my surgeon after I got my results, just a few days later and, by then I had to have a CT scan, which showed the cancer hadn’t spread anywhere else.  My surgeon is a dream and put everything in easy terms to understand.  

I won’t go into further details yet, as you are awaiting your results, and you may not have vulva cancer.

I am fine now, having just had another clear CT scan.  Have to have regular check ups for 5 years post surgery.

In the meantime keep the vulva area clean, especially after toilet trips.  I invested in a peri bottle, from Amazon, and some soft cotton disposable cloths, also from Amazon, just to pat dry.  I still use them daily and wouldn’t be without them.

please keep in touch, especially when you get your results, and I will always help if I can.  I won’t say “don’t worry” for I know you will.  I hope you have someone around you that can give you a hug.

All the best xx

Aw thank you so much. Can I question you again once I know? I know how sore I am at moment can’t imagine what it will be like after WLE.   My hubby is here and is very supportive. It’s difficult as you can’t discuss it with friends and family as it’s so private. Having been thru lung cancer for five years I can’t bear the thought of going thru it all again especially in such a private area. X