VAIN3 just diagnosed

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-

VAIN

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

Getting A Second Opinion

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

Hello Sarah

thanks so much for the reply. Sounds like you’ve had a rough time yourself but hoping it’s all in the past for you. And that you are healed. 

VAIN3 is rare, perhaps that’s why no one looked at it for last 13 years even though I showed persistent HPV and low grade changes. It’s unfortunate because my new doctor told me that it’s guidance to look for it if cervix is okay, but no one did it for me.

yes she did take biopsies and suggested WLE because it’s VAIN3 and so that she can send tissue to check if it’s invasive. I don’t quite understand the status to VAIN 3 with a possibility of being invasive because then it’s cancer but that’s what she said. 

i wanted to check about supplements and intermittent fasting because there is quite some information (but not reliable scientific proof) that you can help recovery using diet etc. 

I really hope you are at the other end and don’t have to worry about it coming back. 
Best

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

Hi,

I had Stage 1 SCC cancer of the cervix which was treated successfully, however, I have very little cervix left and three years on the hpv is still active and causing more problems, last Friday I had my first yearly follow up after having 6 monthly ones and I now have suspected VaIN ( two thick white patches to the lower part of the vagina ) the nurse has taken some photos and a smear and says she will discuss everything at their meeting so now I’m awaiting the smear result and the meeting outcome. Not sure what I’m expecting really. What treatment did you have for your vain3? 

Hi PaintedWings91 and welcome to the group.

I haven’t had VAIN myself-my diagnosis was cervical cancer. I’m sorry to see you have been through cervical cancer too, but it’s good to know that was treated successfully.

I will tag Alliswell who is the original poster in the hope that she will see this and let you know her experience of treatment. 

She was due to have a Wide Loop Excision, so I hope you’ll hear back from her to let you know how that went.

Sarah xx

Thanks SarahH21 for highlighting this to me. 

 PaintedWings91 I kind of understand the uncertainty. I eventually had laser instead of excision in the end but the biopsy taken during laser didn’t show any VAIN anymore. It still shows HPV 16 presence though. My doctor has advised checkup every four months because apparently VAIN has high recurrence rate. Also she does a multi site assessment including anal area as well. If you’ve had persistent HPV and your anal smear is high risk HPV positive, it might be worth discussing anoscopy with your doctor. I understand that the virus affects throat too but apparently there is no screening for it. 

Not trying to worry you at all but only  mentioning it as it may be useful for a comprehensive conversation with your doctor. 

If you have any questions, please do let me know. Hoping that you are dealing with all this relatively well. And we all can be HPV free very soon. :)

Hi Alliswell 

I haven’t had any biopsies taken, she did however take photographs of the areas she said were “a translucent patch of iodine and a low grade area” of what she thinks is VaIN on the lower part and upper part of my vagina. This is all so new to me as usually it’s all been located in my cervix, but from what I understand there is a “field effect” because of those areas all being the same type of cells. The HPV I’ve had for about 19 years and haven’t been able to shift it at all. 

Oh I see, I didn’t realise just how high risk of recurring VaIN is. I’ve not had a multi site check up or an anoscopy before, was this a part of your plan or routine? 

I’ve been under colposcopy every year for about 10 years or so and not experienced that. She did ask if I was immunocompromised which I don’t believe I am. I am also under the impression that HPV causes head and neck cancers too, I believe it has a higher rate in those areas for men. 

Oh no, I appreciate all the information I can get really.

I’m just waiting for my cervical smear results and the outcome from their MDT to decide on next steps at the moment. 

Thank you to you and Sarah! 
it’s reassuring to know someone else has been there with VaIN. :D x

Hello again. 
I believe they only take biopsy when it looks suspicious but I understand that only biopsy can confirm VAIN. And depending on the whether it’s high grade or low grade VAIN, you can decide to wait and watch or local cream or laser or excision. 

yes there is a field effect where it can affect multiple sites, cervix, vagina, vulva, anal and throat. Under NHS they only checked cervix but once I moved to specialist private care, they checked all areas but throat. I have also had HPV for a long time, 12 years, and only once it didnt show up in my smear. I wish I was informed earlier about its impact on other areas than cervix but grateful that I know now.   

I’ve learnt that one needs to lead the medical team by asking probing questions rather than just accepting their first suggestion. Wishing you every luck with your smear result and conversation with MDT. 

yes it helps when you know others are in the same boat. 

Hi PaintedWings91 

I just wanted to add a couple of points.

In the nhs in the UK cervical screening is focused on the cervical area. It is not usual or customary to have an anoscopy, though this might be different in the private sector. An anoscopy might be done in the nhs if you have specifically reported anal symptoms, but it is not done as a matter of course.

The hpv virus does not travel through the body, for example through the blood, so it cannot spread from abnormal cells in the cervix/vagina etc to the throat for example. While it is true that the hpv virus can cause anal, penile and throat cancer, in addition to cervical ,vaginal and vulva cancer, the  cervical screening programme in the UK focuses on screening of the cervix.

Sarah xx 

Hi Alliswell 

I think because of my history with cervical SCC they didn’t want to take more biopsies just in case they aren’t needed yet but she took high resolution pictures with the colposcope to take to the MDT. I think if my smear comes back as hpv positive or has abnormal cells they might decide to take a biopsy. I thought they needed a biopsy to definitively confirm but I’m not 100% sure now. 

Oh definitely, I think you do need to ask questions however my problem is I dread more things being found each time I go to these appointments and I’m so anxious that a lot of things I want to ask slip my mind. 

Hi SarahH21 

Yes, I’ve only ever had treatments and screening to the cervix area. I don’t have any symptoms elsewhere but I do keep an eye on my vulval area just in case. 

The HPV needs to just clear itself somehow and behave, I live a pretty healthy lifestyle but it doesn’t seem to help too much. Is there anything I can try to help or is just a case of my body keeping on trying to clear it on its own?