Social stigma around the word 'anal'

You gotta laugh lol ...I just didn't expect this type of reaction from actual healthcare professionals! Crazy! 

Honestly, I'm fine. Although I'm currently sat waiting to have bloods again  keep getting light headed xx

Nicola, this made me laugh - I love forthrightness, I am married to a man who takes my breath away sometimes, but he is never misunderstood! xx

Hi Jenna

This is an interesting one for me as I wasn’t aware of a stigma until I read about it on this site. The thing I associate with AC the most is ignorance.

I’ve had a range of responses when explaining the condition including “ooooh painful” and the puzzled “sorry???” one but my response to that is to simply explain squamous cell carcinoma of the anus and that seems to work.

I’ve also had the how did you get that and I tell it just as it is, I have absolutely no idea as apart from being in the over 60 age bracket, I don’t seem to have any of the risk factors.

The other thing that strikes me is the misunderstanding or ignorance within the medical profession, the RDC couldn’t spot it when I went through that 18 months ago, my GP said it was internal haemorrhoids, then when I saw the colorectal surgeon in January this year he informed me I had an SCC but he couldn’t refer me due to the biopsy coming back as AIN I asked how many rounds of radiotherapy are required to treat it when I do get referred and he said they do as many as required to get rid of it.

The neurosurgeon who looks after the nerve tumour in my sacrum said they’ll just cut it out when he found out about the SCC, but then he’d reviewed 3 different Pelvic MRI’s in the previous 12 months and hadn’t spotted the 6cm AC tumour sat directly below the 9cm Nerve tumour coming out of my spine.

Monty

Oh my goodness Monty! That's awful.... I was also misdiagnosed for over two years with internal hemorrhoids and they only discovered the 5cm tumour when they put me under to try fix them. 

Most anal cancers are related to the HPV virus, but there is so little knowledge about it. I had a positive smear a couple years back, but no one connected the dots. It's not just cervical cancer that arises from this, it's anal, vaginal, esophageal. Boys are equally at risk as women. 

Where are you at now with it all? 

Jenna xx

Hi Jenna

Yes yours is a similar timeframe to mine as it was 21 months since I went to the gp it’s just the ultra sound scan they referred me for also took some time to arrange.

During the ultra sound scan they found a mass and couldn’t identify it but the area they where scanning was just below where I have the front radiotherapy dot and that’s where the AC is.

There was only one recommendation from the radiographer and that was to have a colonoscopy done. Instead I was referred to the RDC who did all cancer screening i.e. CT scan, MRI, bloods, fit test etc but they didn’t do the colonoscopy.

They came back to me and advised I had what looked like a pre-sacral Schwannoma ( a benign tumour ) and I would be referred to a hospital that specialised in neurosurgery but because that wasn’t on site they wouldn’t be referring me to colorectal or urology.

So I had to go back to my gp who initially diagnosed haemorrhoids but on the last visit I felt I was treated like a bit of a time waster, when asking about the urology referral the new gp total blanked me, didn’t even acknowledge the question and eventually I had to insist I was referred to Colorectal, she reluctantly did the referral and said okay I’ll refer you but it’s going to take ages, it was 6 months before I got a colonoscopy in January this year.

When I was eventually referred to the Christie in May following another biopsy and EUA the Oncologist at the Christie apologised for my rubbish journey so far and reassured me I was in the right place now, I don’t think she needed to do that but it was much appreciated.

Currently just finished treatment this week at The Christie, and all there I’ve seen have been wonderful.

I do have an appointment to see the neurosurgeon in August but I don’t think anything will happen just yet because that’s before my 3 month scans and that side of it was put on hold to deal with the AC as a priority.

Although the Schwannoma is large and therefore slightly more likely to transform it’s in a very difficult place to operate on and the initial advice was to watch and wait as the risks where greater than the perceived benefits.

However like all tissue that’s within the blast range of the radiotherapy there is an increased risk from that also for transformation, so it’s a bit of an unknown at present.

Monty xx

Wow, you really have been going through it. It really annoys me when I hear of people getting brushed off or made to feel like they're making a fuss. I've experience it myself and it makes you question everything. 

I really hope your 3 month scan comes back with good news for you! And that they can then tackle the other tumour. Can imagine it's quite an anxious time awaiting what's next xx

Just had a thought, why do the medical profession refer to this area as colonrectal. It should be colonanul, maybe a name change would help people to remember that little bit at the end called .....ANUS.

When I come back to the UK I am going to use that name. If queried by medical staff, i will enquire how they go to the toilet without it.

It's an amazing piece of the body, but when it goes wrong it is so complex and painful to fix.

Ally

Hi TheMont,

The story of your diagnosis journey left me aghast. Thank goodness you insisted on the referral to Colorectal. I’m sure that wasn’t easy and I know that several of us forum members can identify with feeling like ‘time wasters’ in seeking diagnosis. Well done for your tenacity, although clearly you shouldn’t have needed it. 

My journey was 9 months which felt forever but now realise that this was positively speedy in comparison to many.

Well done on completing this part of your treatment and I hope you’re doing as well as possible. The few weeks immediately post treatment can be very challenging. Thankfully the treatment for AC is very effective so everything crossed for a good outcome for you.

Wishing you all the best for the next steps too. Xx

I never used to be this way Irene75359 but I think advocating for my eldest daughter for the best part of 36 years has drilled it into me & especially around health & well-being I like to get the correct information out there & like your hubby there’s no margins for misunderstandings

Oh gosh TheMont , you really went around the houses for your diagnosis didn’t you? Thankfully you got there on the end & were referred to the wonderful Christie’s (I’ve heard great things about the treatment received there).

On a serious note it absolutely infuriates me how easily our symptoms are brushed aside leading to many more late diagnosis’s that necessary, it really does depend on who you’re greeted by at that initial GP appointment doesn’t it? 

I hope your recovery is a smooth one & you get more answers at your neurology appointment in August.

Take care.

Nicola