VAIN3

Hi Lulu21 and welcome to the group.

I’m sorry to read what has happened with you and can understand how anxious you will be to find out more. The delays must have been difficult to deal with, but it is really a case of sitting tight and waiting for the biopsy results. 

I had bleeding, but because of  cervical cancer, so my situation was different, but I didn’t want to leave you post without a reply. You will I’m sure know that VAIN and the high grade dyskariosis identified on your vault smear are not cancer, but because of the bleeding the results of the biopsy are needed to determine the next steps.

Are you still on the clotting medication to stop the bleeding? Do you know when to expect the biopsy results? I hope you find out more soon, and know what’s happening. Please keep us posted if you can, and feel free to post again if you’d like to. 

Sarah xx

Hi Sarah

Thank you for your reply. I have finished the clotting medication now. I think the biopsy results take about 6 weeks and they have to discuss my case in the MDT meeting too. So at least another 3 weeks to wait. The waiting is so hard isn’t it and not knowing if I will have another bleed is so scary. 

Waiting was for me the worst part of the whole process-it’s just so hard, and so stressful. I had some very bad bleeds in the run up to my own diagnosis, and not knowing when that might happen was horrible so I really feel for you. 

It’s difficult not to let our minds run away with worst case scenarios, but I tried to concentrate on thinking I didn’t have cancer until the doctors said I did. Try and keep busy and distracted if you can. Watching mindless stuff on my iPad-catch up and box sets kept me from dwelling on things I didn’t know for sure.

Sarah xx

Hi Further to my previous post, my biopsies came back VAIN3 and I’ve been referred to another hospital. Yesterday I had an operation and had wide local excisions in 3 different areas. I should receive biopsy results in 3 to 4 weeks when I will see the oncologist. I am really worried about the next step being radiotherapy or chemo. I don’t know what to expect.

Hi Lulu21 

I’m sorry to read that your biopsies came back with VAIN3-how are you feeling after your WLEs? Hope you are taking things easy.

Did your doctor mention the possibility of chemo and/or radiotherapy to you as a potential next step or are you thinking ahead?

It’s another wait for the biopsy results, but I’d recommend trying to focus on what you know for now rather than what might be in the future-I found it easier personally to take things one day at a time, rather than thinking about an unknown future. Easier said than done, I know! 

Sarah xx

Hi thank you for your reply. 
I am feeling a bit sore and achy after yesterday. I didn’t sleep much last night because of the pain even with the painkillers. I am trying to take it easy but with an 8 and a 12 year old it is difficult. 

The oncologist didn’t mention radiotherapy or chemo as yet she just said to await the biopsy results before discussing any other treatment. Of course I think the worst. She said it was likely more VAIN3 could return and they would remove it when it does. 

It’s so hard not to think about what might happen in the future. It’s always at the back of your mind. When it pops into your head in the middle of the night and you can’t sleep because you’re over thinking it all is the worst.

I think it will help a bit once I’m back to a routine and back to work. I am signed off work for 4 weeks but will see how I go. 

Louise xx

Hi Louise

It must be really difficult to manage things with young children-have you got a partner or anyone who can help out at home, or take the children out at all to give you a break? 

I understand how difficult it can be to live with the thought of this returning, and potentially needing more treatment, but it’s hard to live your life in a state of worry and anxiety all the time.

So far, you haven’t had a cancer diagnosis, which is a positive thing, but of course the thought of more surgery in the future will be at the back of your mind. Sometimes hpv can be very persistent, and it can be difficult to get on top of it, but as your oncologist hasn’t mentioned chemo or radio, then I suspect she is hoping that surgery only would be what might be potentially needed again in the future. Chemo and radiation would typically be used for cancer, not precancerous conditions like VAIN. 

Try to stay in the now for the moment and concentrate on looking after yourself in your recovery as much as you can. If you find you are not sleeping due to ongoing pain where your current medication feels it is not sufficient, don’t be afraid to ask for something stronger to help in the interim.

When I found my painkillers weren’t helping, I asked for, and was prescribed something stronger which helped and at least allowed me to get more sleep. Sleeping is one of the things which really helps with recovery from any surgery and you need to heal.

Sarah xx