Hey there! I know that most people on the forum are in the UK, I am in Toronto, but reading in here it seems that the cancer pathways in healthcare are very similar.
I have been in a cycle of colposcopy, biopsy and treatment for HSIL (VAIN3) for the past four years. I have had four laser treatments and one LEEP (LLETZ) for CIN3 along the way. My cervix is somewhat clear, I am LSIL (CIN1/2) now for the past couple of years but VAIN3 biopsies have been showing more and more aggressive and now recurring within 4-6 months after the laser treatment. I am being seen by a doctor considered to be the foremost specialist in vulvar and vaginal cancers so feel taken care of. Even she is getting frustrated regarding the pace of the recurrence and said we may be delaying the inevitable. This is also what my family doctor has also repeated. I just had my most recent colp in mid-May, follow up after laser in December and there were two new lesions. Laser was initially scheduled for mid-June, but I have put it off to late July (still within the 8 weeks post result, as recommended) as I have a lot going on right now and just need a bit of head space. After four years, it's hard not to feel guineapiggish, especially when after every appointment they say "this is so rare, recurrence is rare, vaginal cancer is rare" but then I am back with same results.
Just looking to connect with anybody in a similar cycle of pre-C treatment. It feels like a weird purgatory: not cancer but the anxiety between tests/exams/treatment is still pretty high. I get stuck in this weird guilt where I feel like I should NOT be stressed because it is (Nurse's words) "only precancerous" or "in-situ, not cancer" .... so then the anxiety about being stressed when I don't think i should be "allowed" to be starts to overwhelm the worry about the test itself... Ugh. It's been a trip. Anyway, hearing other people's experiences would be so helpful even though I don't wish this on anyone. It's just not common enough to actually have met another person to have a coffee with and exchange experiences with.
xo,
dana
Hi DanaBanana and welcome to the MacMillan community and this group.
You've certainly had a lot to deal with over the years, and I can’t imagine how difficult it must be to deal with such repeated recurrences and ongoing VAIN3.
It’s fine to be part of the forum even though you are in Toronto, but I’ll put a link here to MacMillan information on VAIN so that you can read about the treatment here in the UK via our national health service, in case you have not read it before.
As you’ve said, what you’re dealing with is rare, and this group does tend to be one of the quieter groups within the community, but I hope you’ll get replies from others who can identify with what you’re going through.
I haven’t been through this myself, as I had cervical cancer, but I do keep an eye on this group as I have had my vagina completely removed as part of a total pelvic exenteration when my tumour was growing into the vaginal wall.
We have had a few posts about VAIN3 within the group here, so I hope that you’ll hear back from others when they see your post.
Sarah xx
