Hello all,
Thankful to have found this group! I am a 50 yr old wife and mom to 2 beautiful daughters 28 and 22 and live in Toronto.
This is not my first rodeo with a cancer diagnoses. 13 years ago I was diagnosed with stage 3 breast cancer and have been cancer free since the end of treatment so I do know things aren't always as bad as they seem when first diagnosed and there is hope 
This time around however I am angry and I am certainly fearful of the treatment such as radiation...not the treatment itself but the location. I know how painful it was on my breast, I'm having a hard time wrapping my brain around it being aimed on my bottom!!
I'm angry because I have been suffering with this since 2016 and my GP kept saying it was hemorrhoids and sent me to a surgeon who when I pointed out the tiny bump just on/in the verge of my anal canal waved her hand and said oh that's an std but I'll do hemorrhoid banding for your internal hemorrhoids...didn't even know they existed. Long story short, after that I still saw my GP for the same problem afterwards and was given hemorrhoid cream. Now it has spread to the outside as a patch almost completely around my anus and across towards my buttock and I think it has spread more inside as I am bleeding, have pain, and have an ulcer....the itching I have endured this many years is ridiculous. I feel partly to blame because I did not push and say no, something doesn't feel right until this past February.
With covid, all surgeries that are not necessary are being postponed and surgeons aren't taking new patients unless it is cancer...Hello? How do you know if it's cancer without a surgeon to order a biopsy? So I was sent to a dermatologist for a biopsy by my GP and the biopsy was taken from the furthest point away from where this started which came back as squamous cell carcinoma in situ. I guess I don't quite understand how a biopsy on my buttock can tell the story of what's going on just inside my anal canal from 2 inches away on non moist skin. I have had a colonoscopy which was clear but not an anoscopy. I have had a CT scan which showed a 15mm lymph node in my abdomen above my belly button deep to the abdominal wall and am waiting to go for mri appointment next week.
I have a 60 min consult Wednesday with a Dr. who is a radiologist oncologist but as I said, I feel like I have not been looked at properly and I am frustrated....this is just all very different from how things are typically done in my experience...I've had tests before anyone has seriously looked and it all seems backwards to me.
I'm sorry for the rant but even the dermatologist did not look, if I had not gone in with a picture on my phone of my bottom to show him he would not have even seen it as he had a nurse do the biopsy.
The dermatologists office forwarded me to the cancer clinic and the cancer clinic wrote them back saying you need to refer her to a surgeon but the dermatologist office thought they were no longer dealing with it and if I had not called the cancer clinic, at this point in time I would have fallen through the cracks. So now I'm going to speak to the radiologist oncologist for pre op...this makes no sense to me.
Is anyone going through this? Is this because of covid and the government deciding who and what is important?
When I had cancer before I never had to go through all this waiting and literally chasing down appointments and advocating so hard for myself...it's been 4 months now.
Thank you for taking the time to read this
Rayna
Hi Rayna,
I’d also like to wish you a warm welcome to the online community although I’m sorry you find yourself here.
I’m 3 years out of treatment & have been on the forum since I was diagnosed & I’ve honestly lost count of how many people have come here that have been misdiagnosed, some like you for a long time, it infuriates me it really does!! As Bev has said the cure rate with anal cancer is good although obviously with any cancer diagnosis, as you’ll already know with your other brush with this disease, that the earlier this thing is diagnosed then the easier it’s treated.
It really sounds as though you’ve been pushed from pillar to post too, you must feel as though nobody wanted to take responsibility for this! The annoying part for me in misdiagnosis is that it’s always pushed home by Dr’s etc., that early diagnosis, especially with cancers, is key & then when you are body aware & flag something unusual early on you get fobbed off the way you have been. Having said all of that I was incredibly lucky right from the young locum GP that first referred me through to my local lower colon team (biopsy & diagnosis) to my colorectal surgeon & my oncologist they have all been great & super quick in getting the job done.
I also agree with what you’ve said (fantastically put I may add) about the squeaky wheel getting the oil, but how exhausting is it having to chase everything up when you have just had a cancer diagnosis & you’re going to be off kilter anyway. Here in the UK we’re generally referred to a colorectal surgeon first then onto oncology but you’re the first that I’ve heard of being diagnosed via a dermatologist.
Hopefully once you have this appointment on Wednesday with the radiology oncologist then things will start progressing as they should & a treatment plan will be put into place for you. I’ll just add that I’m so sorry that this has been your experience so far, I would definitely be making an official complaint somewhere along the line although I fear that the pandemic will be a cover all excuse for bad management of cases such as yours!
Please let us know how you get on, we’re always here when needed & have a wealth of experience amongst our lovely members. Good luck for Wednesday.
Nicola
Hi again Rayna,
So is the radiology oncologist definitely going to refer you to a colorectal surgeon?
If you’ve been biopsied, regardless of where on the problem area that was & squamous cell carcinoma has come back as the result then you most definitely should be getting treated yes, also with a matter of urgency!
Here in the UK I was given a flexible sigmoidoscopy at the same time as biopsies were taken & that, like your colonoscopy, was clear, my surgeon wouldn’t confirm anal cancer until the biopsy results came back but you have all of this information & a diagnosis so as far as I’m concerned some kind of treatment should be in at the very least the planning stage! Things here for me moved really quickly once I had my diagnosis & within a week & a half I’d had both MRI & CT scans to assist in staging my cancer & had an appointment with my colorectal surgeon, he decidedly mine was early enough stages to be removed via local resection (no stoma required) I then went on to have a reduced course of chemoradiotherapy also.
Regarding the surgery, here surgery is only an option as first line treatment if you’re caught very early as I was I think the surgery your radiology oncologist is speaking of is possibly APR surgery where everything, rectum & anus etc., is fully removed which is generally only performed as a last resort to clear recurring anal cancer or a cancer that hasn’t responded to treatment & then obviously you’re left with an irreversible stoma. Some of our members here have temporary stomas but generally only if the tumour they have is large enough that it’s blocking the anal canal, these are then reversed on the whole once you’ve healed from treatment & things have settled right down. Having said this if you’re not a candidate for local resection like I was then you should be referred to an oncologist where a course of chemoradiotherapy should be planned for you.
I can’t understand your Dr’s saying it’s usually watched rather than treated, the only time that should be happening is if the cells were pre-cancerous (AIN) but you’ve had a diagnosis of SCC! I would chase, chase, chase this until you’re seen by someone competent enough to get you treated as although SCC anal cancer is generally a slow growing cancer it most definitely is invasive & can be metastatic.
Please let us know when you hear any more.
Nicola
