Hello all. So mines a complicated one. Im going to make it short and sweet in April 24 I got a random phone call to say I had an app at the hospital the following week. I went to this appointment none the wiser to what it was actually for. Anyways turns on in 2021 I had biopsies taken but only got told results of these biopsies in April this year. I had precancerous cells ain3 in 2021 which should have been treated then. Fast forward a bit. In June I had biopsies taken from my vulva and perennial area. To which I had vin3 and told didn't have cancer. Wide local excision was done 2 weeks ago. And biopsies taken again. Yesterday I find out that I actually had SSC cancer of the vulva but was all removed and see me again in 4months. Where is my 6 week follow up. I'm still healing and in pain and was told didn't have cancer but really I did but it's all removed?? Has anyone had similar situation. I was told theses results over the phone and no further help or explanation. Just wait and see them in 4, month. All this stems from being left for 3 years and it spread. Question is how do they know they got all the cancer when they didn't think I had it in the first place. These last few months have been worst ever. So many tests. So many biopsies and an op. With more to come and no one seems bothered. Don't know how to feel or what to think. NHS fucked up big time. All this needn't have happened if I'd been dealt with properly 3 years ago. Sorry for rant
Hi Leezim and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It sounds like you've had a difficult year so I can understand you wanting to know how your team know they've removed all the cancer.
I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Hello Leezim. Welcome to the forum. I’m sorry to hear all you’ve been through and are still going through. You can have a look at my profile if you like, I have vulval cancer, AIN3 and CIN3. So, my situation is not the same as yours but a bit similar. Were you given access to a clinical nurse specialist (CNS), support worker or key worker at the hospital where you had your op? If so, you might find it helpful to contact them with your questions.
You’ve certainly had a lot to deal with, - tests, op etc and it’s no wonder you don’t know how to feel/think. It’s hard to know what to say, we all deal with things differently, but I’ll let you know what I did. One day I was soooooo upset about the AIN3 treatment due whilst I was recovering from wide local excision that I rang the MacMillan hotline. I spoke to a wonderful lady, who basically listened and offered a bit of advice. It helped me. I also rang another time about my pathology report.
Here’s hoping you get some answers soon. Oh, and rant away, this is a good place to do so.
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