January 2024
thanks for the reply. i forgot to come back and update you on my journey. so i had the CT scan and ended up seeing my gyn on the monday. i was desperate for something and although it wasn’t her forte, she took me through the results. it said a lymph node looked suspicious but there was no spread to lungs, bone or liver. that was very reassuring. i saw the gyn onc the next day who said “im not worried about you at all” but then told me the next step was sentinel lymph node dissection (bilateral) and another wide local excision to remove more margin off the VIN taken in the original procedure. this was early december and surgery was booked for early jan. she told me to forget about this and go enjoy my christmas. easier said than done but ok. i managed to get through the holidays without worrying too much. january rolled around and i had my nuclear scan last week then the surgery the following morning. all went well and i was sent home after 2 nights at the hospital. the drains were the worst part. i’ve been home resting since then and my gyn onc called on tuesday with my results. it was a tense wait for that phone call not knowing what the result would be (she assured me the chance of lymph node spread was very small but still, you just never know) but she called and the nodes were all clear. she also said the extra tissue she took in the second wide local excision showed VIN changes but it was all excised with good margins and in her words “you have a perfectly healthy vulva now”. epic relief. there are no words. ill be watched like a hawk now and of course i’m petrified of a reoccurrence but i’ve been given a reprieve and i’ll take it. i’m so grateful 💜💜
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December 2023
1 Kudo
thanks lovely. yes i did get to the CT scan today. it was ok, lots of waiting around in sensory unfriendly waiting rooms. no results yet. so it’ll be a fraught and anxious weekend thinking what if. how are you going?
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November 2023
1 Kudo
hi everyone im not sure how active these forums are but thought i’d pop in and say hi anyway. today i was told a lesion that was removed from my vulva had come back from pathology as being cancer. of course your mind goes into a blank spin when you hear that word and it’s being used about you. i’ve had the surgery to remove it which is good but i have to go for a CT scan tomorrow to see if it’s spread. of course i am shitting myself. i was really hoping i’d see the doctor today and was told this whole debacle was over, got the abnormality out with clear margins, see you in 6 months for a check up. i feel shocked and scared that this is potentially my life now. a blur of scary medical appointments, bad news, treatments that make you sick, people feeling sorry for you and looking at you like you’re dying. i’m 43 and have 2 young kids. i’m in disbelief and anger, sadness and distress. i’m trying to lean into it, embrace the uncertainty and discomfort and accept that i have no control. but it’s still shit. nobody wants this and i just feel like this is drastically unfair. how do you cope with this sort of news and still go about living your life day to day. the daily grind of cooking and cleaning and taking the kids to school, all meanwhile staring down your own mortality. it makes no sense.
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November 2023
1 Kudo
sorry you’re being brushed off. quite frankly this is appalling. it sounds like you’ve got some pretty serious symptoms going on, what are they waiting for? i’m sorry the public system is being so dismissive. i’d 100% pay to see a gynecologist, they don’t mess around and you’ll get some answers asap hopefully. please give us an update and let us know how you’re going x
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