Hi, I just wondered other people’s experiences, I have the risk factors for Anal Cancer, HPV carrier, have had fistulas due to 35 years of Crohn’s disease, pre-cancerous cells in cervix, 45 year old female.
I have been experiencing blood, pus, itchiness and soreness for 18 months - unable to be examined before due to Covid (and everything is usually explained away as a Crohn’s complication). I saw the surgeon last week, she was unable to properly examine me at the time due to pain but I was alarmed with how quick she wanted me in for the biopsy - in 35 years of Crohn’s disease treatment I’ve never only waited 10 days for anything!
So I had a biopsy under anaesthesia yesterday, surgeon came to see me afterwards and said she didn’t know what it was. It’s flat, goes further back than she first thought but it could just be scar tissue. She said it’s small and if it is a growth it’ll be treatable. She asked if I wanted to see her if it was bad news or just speak on telephone (I said telephone to not hold things up waiting for an appointment). She said she’d phone as soon as she had the results and I’m booked in for a CT scan if I need it (I can’t have MRI due to SNS implant).
Sorry this is so long, I just wanted to know if anyone had experienced their growth/abnormality being described as ‘flat’? Has anyone else came out of the biopsy with the surgeon not being sure what they’re dealing with? Obviously I’m worried but not sure how worried I should be. After 35 years of Crohn’s I’ve been through pain and practically every indignity imaginable - I can and will deal with it and give it all the fight I can muster as I have 2 kids who need me. I’m rambling now, hope you’ve not gotten bored and left 
TIA for any replies x
Hi again ,
I completely understand how you feel about not wanting to discuss much, I was exactly the same, I spoke to my parents, youngest daughter (then 16) & my sister but most of the discussion about my diagnosis etc., was poured out on here. I needed to hear from others that were in a similar situation to myself & from people that were through the other side of treatment etc. I’m pleased that you feel better for being here & being able to discuss your situation. We’re here whenever you need us.
Nicola
Hi there ,
I’m so sorry that this has been the outcome, it’s not the news any of us wanted to hear!
For me a wait of 3-4 weeks for scans really is not acceptable where a cancer diagnosis is concerned. Squamous Cell Carcinoma anal cancer is generally a slow growing cancer but that isn’t the point! I would be chasing that up if I were you, if you have transport & it’s at all possible make your Dr aware that you’re willing to travel to any hospital nearby if the scan appointments can be made any earlier. If you get no joy with your Dr you could always contact the PALS service at your treating hospital to see if they could assist you. I had my annual surveillance scans last summer & my surgeon asked if I was ok to travel to one of 3 possible hospitals, one being a private hospital, depending on where there was availability for appointments.
I was diagnosed February 2018 so pre-pandemic, I was diagnosed on the Thursday or Friday (can’t quite remember!) & had my scans, both MRI & CT the following Tuesday, it was all very quick.
I was like you & once I’d had a biopsy I think I knew, I was expecting the worst but again still hoping for the best, it does still come as an awful shock though doesn’t it? I remember feeling afraid but also kind of numb & to a certain extent that never really went away until I was treated, I suppose my body slipped into self-preservation mode.
I would certainly give a good push to get those scans earlier, there’s a saying up north where I live ‘shy bairns get nowt’ so make yourself heard it may do some good.
Nicola
Hi ,
Im figuring from your last couple of posts that your in the US? Unfortunately it doesn’t seem unusual for medical insurance companies to wrangle about meeting the cost of especially PET scans! I dread to think what the cost of a private scan would be here in the UK if you’re not already in a private medical scheme.
I know it’s difficult but try & stay away from Dr Google, so much of the information out there is outdated & sometimes plain wrong & misinformed! If you have questions etc., please try & go through a reputable site such as Macmillan, Cancer Research (I know this is a UK site but you’ll still be able to access good reliable information) there’s also the American Anal Cancer Foundation & I do believe there’s the Farrah Fawcett Foundation in the US too. Dr Google is a very scary place but somewhere we’ve all visited I’m sure at least once!
Good luck with your scan on Monday.
Nicola
