Hi I’ve just joined the forum having been diagnosed last week. I would love to hear from anyone on a similar journey. Please read my profile for some info.
I was diagnosed with Stage 3 vulva cancer a couple of years ago. I've had surgery, radiotherapy and chemotherapy. If you've got any questions or just want to chat about it feel free to message me. X
Hi Hayley, well scan of liver back with no cancer so great news! I’m starting treatment this week but tomorrow is a bank holiday so later in week date to be confirmed. I do feel my tummy has swollen probably to do with the lymph nodes in my groin.
I am at peace with it all but feeling as if life has stood still can’t settle myself to do anything! Just want to get started.
That's good news you have been through your treatment and doing well. I've just been diagnosed with early stage vulval cancer and awaiting surgery. The hospital don't do sentinel lymph node biopsy so having to have full removal both sides of groin. This poses a huge lymphoedema risk and wondered how you were managing your risk after surgery.
I was told that the risk of me developing lymphoedema was 50% - thankfully not developed yet although my thighs do look bigger lol but that could just be the weight gain from menopause. I was told that moisturising my skin was very important so I use Aveeno cream/body wash.... pretty much every Aveeno product out there! I was also advised to avoid using razors to shave my legs so I purchased an electric shaver. I'm careful with any cuts I get on my legs and make sure that I clean them straight away. When I'm sitting at home I also try to keep my legs elevated. I'll probably get it at some point knowing my luck lol. Do you know when your surgery is? Is it just surgery or are you also having radiotherapy/chemo? Xx
Many thanks, Hayley. Reading about your experiences is very helpful and reassuring. I'm hoping it will be just surgery but all depends on the lymph node biopsy. Good to hear you are coping with everything so positively. I'll try to follow your example.
Hi haylzz, quite awhile since I’ve posted! Well my treatment finished on 10th July and I got home on 11th.
I started off well but I had a rough enough time in the latter part of treatment. I’m not a fainter but this happened twice - firstly when I started to get my first chemo , blood pressure very low so not safe to proceed and then about week 3 when I was heading home on the Friday. They were really concerned as my blood pressure again was so low so lay all day and got out of hospital that evening and travelled home on the Saturday. That weekend I was so ill couldn’t lift my head and didn’t know how I was going to travel back to hospital on the Sunday evening. Got to apartment but had a terrible night and so unwell the next morning so when I got to hospital they admitted me for the remainder of my treatment. I later found out I had Covid so unsure if this added to how I had been feeling. So in total I got my radio for 6 weeks Monday to Friday but only one chemo out of six. My skin was really bad nearing the end but I was well looked after.
I healed very quickly probably within 3/4 weeks which was great and I’m now able to walk the dog and generally able to do most things but I have little energy so having early nights lol.
I had my mri scan yesterday so should hear within two weeks and then meet consultant as to way forward. I know the treatment has definitely worked but not 100 pc and I do find my stomach swollen at times and some hip pain.
I remain positive as I’m keeping well and await an update on how the treatment has done.
