Vulvar cancer

Hi, I have just been diagnosed waiting for further investigation and treatment plan. I have decided to be really open about it including where it is, my son asked what he should say when anyone asks what type of cancer and I said be open. We need to remove the embarrassment so women seek help earlier. I am feeling ok at the moment as just hoping it hasn’t spread. 

Hi Helen

I*ve tried to be open about my vulva cancer but it does get a little difficult when you have to explain where the vulva is!  I have come across this a lot as so many, even women, have no idea.  If it gets too difficult and people get embarrassed and they do, I just say its a gynae cancer. I*m always happy to explain but most people just don't want to know!  Hope your treatment goes well.  My latest scan has come back as 'entirely satisfactory'.  I have had 2 operations, one to remove the cancer and and sentinel lymph nodes and one, because one of these nodes was cancerous, another op to remove 18 lymph nodes which were all ok. Then 25 days of radiotherapy.  Good luck with your treatment xx

Yes, discovered that today when met a work colleague for lunch and she didn’t know what vulva was! Worrying that women have no idea about their own bodies. Pleased to hear you are in the ‘entirely satisfactory’ phase. I feel my life is on hold at the moment as can’t make any plans until I know what treatment I need. Desperately hoping that it hasn’t spread. 

Hi Helen

I had a CD scan before I started treatment which showed it hadn't spread to any other organs.  I'm assuming yours is a squamous cell carcinoma like mine. I was definitely worried when I was told it had spread to my sentinel nodes, but my Consultant wasn't phased at all as its not unusual.  I was concerned about having 18 lymph nodes removed from groin and pelvic area as it was pretty major operation.  They explained it very well and it wasn't anywhere near as bad as I imagined, but I was very relieved when they said the lymph nodes were clear.  I then had 5 weeks of radiotherapy to mop up any rogue cells.  I can only say take one step at a time, take any advice offered and try to always take someone with you to appointments as you won't take in everything the Consultant tells you.  You'll feel better when you have your treatment plan. You'll be given a specialist nurse, they're fantastic,speak to her about any worries.  She has direct access to your Consultant and they are brilliant.  I'm presently attending a series of  gynae cancer meetings arranged by mine at the local Force Centre and they're really helpful.  Good luck with your treatment plan and treatment xxx