Persistent VAIN3, Four years of Conservative Treatment

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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

SarahH21 over 1 year ago

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.

VAIN

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

Cervical Cancer Forum

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

DanaBanana over 1 year ago in reply to SarahH21

Thanks for the welcome, Sarah! I have gone through MacMillan's excellent site information. This is a fantastic resource. On the Canadian cancer forum there are only a small handful of people with VAIN/VIN or Vaginal Cancer, so very quiet there as well.

Alliswell 4 months ago

Hello DanaBanana

How are you now? I can say I understand your frustration a bit. 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 had 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 Excision rather than laser along with ECC (endocervical curette) and HRA (anoscopy) to ensure that there is nothing sinister going on. Do you know why your doctor suggested laser vs Wide Excision? Mine said laser only burns the cell and we want all of the cells to be removed with clear margin of healthy cells to ensure all abnormal cells are removed. I am very new to this but thought I’d mention. Are you taking any special diet or supplements or practising intermittent fasting? I am just reading all the material in it.

wishing you full recovery soon.

Simba01118adcb8 12 days ago

I had HSIL on cervix for about four years. I had LEEP performed and ultimately a hysterectomy. The pathology was good and the CIN had only scant cellularity. I was discharged from colposcopy and went for my first annual PAP a year and a half ago. The PAP showed VAIN 3 and had laser surgery. 6 months later the biopsy showed VAIN 3 and then 2nd laser. After the second laser treatment no biopsy was taken. Just a PAP. It showed VAIN 1 and there was no follow or treatment. I go back in two months and feel anxious. It has been 5 and a half years dealing with this every six months. I totally agree with your feelings and can say I feel the same way. I try not to think about it between appointments but inevitably as the appointment approaches so does the dread. I am sorry you have been going through this but wanted to say I think your reaction and my reaction is probably pretty normal. I hope you get some clear results really soon.