Hi there,
Wow.... first of all, reading through many of the streams, I have to say - what an INCREDIBLE group of COURAGOUS warriors! I'm blown away.
My mom (75) has just been diagnosed with vulvular cancer - she's had Lichen Sclorosis for years. (I have it, too, gulp). They did MRI and CT scans and have said right now it seems to be on the vulva only, although they don't know about the lymph nodes yet. She had a biopsy done in June and waited THREE MONTHS to get into the wrong kind of dr, and finally was referred to the gyno-oncology dept at the Tom Baker Centre in Calgary. The lump/sore grew back larger within the waiting time.
They have decided they will proceed with a Modified Radical Vulvectomy, and will remove the lymph nodes on both sides of the groin.
We do not live in Calgary - we live 2.5 hours away. We are trying to determine what kind of care she will need afterwards. She will have drains in for at least 10 days. Should we stay in Calgary that whole time? And also, they never mentioned anything about lymphedema.
I am so lost! Can anyone give me guidance as to what should specifically asked to the Care Team (I don't actually know if she has a true care team yet - trying to find this out, too).
What should we ask about the after care?
What should we ask about after results?
Any help that can be given would be so deeply appreciated!
Thank you, thank you, thank you!
And to all you beautiful courageous souls.... I send my love, prayers and the deepest of respect.
Hi inalberta,
I am sorry to hear of your mom’s diagnosis.
It doesn’t sound as though you guys have had an easy run! That’s such a long time to wait only to find out your mom had been referred to the wrong doctor!
It’s hard to say whether you should stay in Calgary as I am not sure how health care works there. Would you be expected to travel to Calgary to have check ups soon after surgery? If so then it may be easier to stay close by if that’s an option. I am thinking that surgery can leave people tired and uncomfortable and it will be a long day with a 5 hour round trip.
You may find this information on lymphoedema helpful- https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/lymphoedema
With regards to questions it’s different for different people. I would make a list and ask what ever feels important for you and your mum. There’s no such thing as a silly question. For me I wanted to know how long my recovery period was likely to be, what I would and wouldn’t be able to do during my recovery period and how long my biopsy results were likely to take. I wish I had asked what to expect after surgery and for any tips they could give me on making it as smooth and comfortable as possible. I say this because there were things that I could have changed to help my recovery- lose clothing is a must, a peri bottle to help rinse the area after toileting and I needed stronger pain relief than I could purchase over the counter, but left the hospital without any and then had to arrange it via my GP when I was feeling rubbish and could have done without it.
I am here if you want someone to talk to or if you have any questions.
Hi inalberta,
You are most welcome 
Thank you for your kind words. My experience was difficult, but it has allowed me to better understand other ladies journeys with this difficult cancer. I like to help where I can.
I am glad there are plans in place to manage your mom’s pain. You’re right, pain medication can indeed cause constipation. The doctor prescribed me lactulose alongside my pain relief so hopefully they will do the same for your mom as yes constipation after surgery would be very difficult.
I stayed 1 night, but others sometimes stay longer. If you feel a second night would be beneficial then it is always worth asking.
VIN is pre cancerous changes. The higher the number, the worse the changes. I had a mixture of VIN 3 and low grade cancer.
You’re most welcome and yes please do come back to me with any questions you think of.
Warm wishes,
