Hello again,
I haven’t posted here since I was declared cancer free just shy of two years ago. Now I’m worried it may be back. I’ve had my regular appointments every 3 months and usually with a nurse rather than my oncologist and they even told me that if my next appointment (Thursday the 23rd) goes well I’ll be bumped to every 6 months. But I don’t think that’s going to happen, I’ve been a bit worried before my last few appointments and brought my concerns up but they were sure it was nothing (the nurse brought in my oncologist for a quick look last time). Shortly after my last surgery I had a skin tag show up on my clitoris (clitoral hood??), and my doctor wasn’t concerned about it. But my last few appointments I’d been very itchy/dry in that area every once in a while, at one point I scratched so hard I started to bleed and was in pain for a few days after. At my last appointment they just told me to stop using soap and gave me lubrication to help with dryness. I switched to gentle unscented baby soap and that did help a little, because I think I was allergic to whatever I was using as I’d get rashes in other areas. But I still do get occasional itching and now I’m worried that I feel multiple growths. I feel a spot right under the skin tag and another just below it I think, although I’m not 100% on that one because it could be scarring from my previous 3 surgeries. I’m kind of freaking out at this point because I physically and emotionally don’t think I can handle a 4th surgery. I’m only 23, when I was diagnosed at 20, my life was a complete mess, I’d just failed out of school and wasn’t in the best place mental health wise, so cancer hadn’t really hit me very hard. But now I’ve got it together, I have two jobs and I’m in school to be a nurse. I can not have cancer disrupt my studies, my jobs or my bills. On top of that I work at the hospital that I got my treatment at. Also I’m terrified that I’ll lose my clitoris. I still haven’t come to terms with the fact that my labia has giant pieces missing and that it’ll never be the same. I’m also still a virgin, never had sex and now I’m worried cancer will ruin it before I even get the chance. I’m sorry for the rambling and not very well thought out paragraphs, I’m just really worried this time. The last few times I was concerned I never spiraled this far but I really think something is wrong this time. I would love if y’all could reassure me that this (possible) recurrence wont be the end of the world.
Hi, ab1996, I was also very young, 21 when I noticed what looked like a dark mole on my labia, doctors said it looked normal and didn’t biopsy it until I was 23, it was squamous cell carcinoma in-situ, I had to have a wide local excision, now 8 years later I have to go through all of this again, my most recent biopsy for a spot I noticed that was slightly pigmented and very small, also came back as squamous cell carcinoma in-situ, so I am being referred back to oncology again 8 years later, I understand how frustrating it is, my doctors said once I hit the 5 year mark I didn’t have to worry anymore, but it looks like with this kind of cancer, it’s a lifelong follow up, I hope everything goes ok with you, I had to insist my doctor do a boipsy on the spot that I found, because she insisted it was benign, but it wasn’t. But try not to worry, just go to your appointments, and try your best not to think about it all the time, I’m planning a vacation after my surgery, to give me something to look forward to after going through all of this , stay positive
Thank you! I hope all goes well for you too and that you have a wonderful vacation after your surgery! It's reassuring to know that there are other women out there who were also diagnosed at this age because it's quite rare and can feel lonely sometimes (although I wish no one, young or older, would be diagnosed with this!). I'm thinking once my doctor takes a look he will definitely want to biopsy, but if not I'm prepared to advocate for myself. In a way, I'm frustrated because I kind of feel as though it wouldn't have progressed this far had the skin tag been removed earlier. If that's really the cause of it, it could also be lingering cancer cells from my first go around as it's on the same side where everything originally started. I love my oncologist and he is wonderful but I do feel like this wasn't taken as seriously as it should have.
I am not looking forward to the lifelong follow up, it feels like I'll always be looking over my shoulder, waiting for it to show up again.
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