Hello Ladies
I have just been diagnosed with VAIN3 and have heard how rare it is and yet I am in that category. Mine was because I have persistent HPV16 infection for decades and even after LLETZ the smear showed low grade changes and my doctor suggested hysterectomy. It was only when I changed my doctor, I came to know that the problem isn’t in my cervix but it’s the vagina. Not sure why NHS and my previous private doctor never mentioned it. My new doctor caught it and now it’s VAIN3. She has suggested Wide Loop Excision rather than laser along with ECC (endocervical curette) and HRA (anoscopy) to ensure that there is nothing sinister going on in other areas. How have others dealt with VAIN3? They say VAIN3 is not cancer but could it still be cancerous underneath the VAIN3 leisons? am a bit anxious about finding the right surgeon too to do this as my previous doctor who performed LLETZ did a shoddy job.
Are you taking any special diet or supplements or practising intermittent fasting?
Wishing everyone full recovery soon.
Hi Alliswell and welcome to Macmillan and the vaginal cancer group.
I am one of the Community Champions for MacMillan, and help out round some of the gynaecological support groups as I’ve had cervical cancer and major gynaecological surgery, and I noticed you hadn’t yet received a reply yet to your post.
This group can be quite quiet-as you noted, this is a rarer cancer. I’m familiar with persistent hpv, and vaginal surgery, but I haven’t suffered from VAIN. Hopefully now that I’ve replied here, your post will get a little boost and more members with the right experience will see it and respond.
VAIN3 is not cancer, but it is the highest level of pre cancerous cells. Did you have any biopsy to reach your diagnosis? MacMillan has some information here which might be helpful for you in terms of the possible treatment required-
It is possible to request a second opinion if you are not comfortable with what has been proposed, and a guide to doing that can be found here
You’ve asked about supplements and intermittent fasting, but I haven’t got any experience of these. When I was being treated for my cervical cancer I wasn’t allowed to take any supplements in case they interfered with any of my treatment (which was chemo and radiotherapy initially).
I hope you’ll get some further replies, but do please keep in touch to let us know how things go for you.
Sarah xx
Hi again.
It’s only the biopsy results which would be able to confirm whether the VAIN3 has become cancer which is invasive-even when the doctors are fairly certain what they’re seeing, they need biopsies to confirm either way for sure.
With a wide loop excision they would be taking enough tissue to hopefully have a margin of clear, healthy tissue around it, and taking more than would be taken with a biopsy as it is treatment for a bigger area normally.
Yes, I understand that if you’ve been reading about things which you believe might help then you’d want to know more if anyone had tried them. As you’ve mentioned, reliable scientific proof is important when considering any kind of ways of helping your body. I’ve always followed my medical doctors’ advice and relied on verifiable information, and certainly believe that a healthy diet is important to recovery both from treatment and surgery.
I think that there is always some level of worry about cancer coming back, although to be honest I don’t think about it as it’s not helpful to spend my life worrying. There is no cure for the hpv virus, but the hope is that it won’t cause any further issues for me in my situation. Hopefully your VAIN can be treated/removed without it developing any further.
Sarah xx
