Hello my lovelies, I was diagnosed with anal SCC on 1 March after a lesion was removed from the perianal area, had my ct & mri and met a different consultant after the mdt meeting on 18 March. The great news was they got clear margins and the scans were clear. Now, this was the unexpected bit, my new consultant is now taking me down the HPV AIN3 route and I'm waiting now for appointments for a high resolution anoscopy under GA, colonoscopy and investigations from gynea. I was wondering if anyone has a similar experience or any advice or can help me to understand.
Hi Babyelephant,
I'm no expert but like many of us here I’ve learned a quite a bit along the way. I do know that a high proportion of anal cancers are HPV related so maybe when you had your surgery your lesion tested positive for HPV & they’re just being cautious with the extra tests? Your anal cancer must have been like mine & pretty early stages as that’s the only way they’ll consider surgery as first line treatment (assuming you’re in the UK). Did your new consultant give any explanation at all as to why he was taking this route? Sorry I couldn’t be of more help.
Nicola
Hi again Babyelephant, I hadn’t even thought of HPV prior to my diagnosis, my daughter had her vaccinations at school but that’s all I knew of it. Now I know it causes some cervical cancers, anal cancers, some throat & mouth cancers & penile cancers. I’m still not aware if my anal cancer was HPV related or not. My tumour could be felt by my surgeon on internal examination but wasn’t detectable on either of my diagnostic scans (CT & MRI). My surgery went well, the majority of the clear margins achieved was at 4mm but a tiny portion had only a 1mm clearance which is the cut off point for further treatment, this meant I was offered chemoradiotherapy, I was entered into the PLATO trial which consisted of 23 days of chemoradiotherapy with slightly lower dose radiotherapy than the norm. Following my surgery I was really sore for a couple of weeks but I seemed to turn a corner then things healed really quickly. I’m now almost 4 years post treatment & disease free to date as far as I’m aware. Please just ask if you have any other questions.
Nicola
Hi there Viktor18,
It’s never been made clear if my cancer was HPV related either, I keep meaning to ask but forget every time I’m seen in clinic!!
You’re correct in what you say about almost everyone that has been sexually active will have come into contact with HPV of some description, it’s also true that in most cases our immune system clears it without any problems but it can lay dormant in your system for a very long time & it just takes something to trigger it again, usually a dip in immunity (for us women this can occur during menopause) also there are many different strains & only a couple that are likely to cause issues at a later date, generally HPV16 & HPV18.
I always warn people not to go to Dr Google! It’s plain scary out there!! It makes me really frustrated that the information out there is so outdated or just plain wrong!! It’s a common misconception that you must be promiscuous to contract this virus & you must have lived a certain lifestyle, there's a lot of shame attached to this diagnosis because of this misinformation.
Although anal cancer originates the same way as many cervical cancers why isn’t it given the same airtime? I had no clue about anal cancer prior to my diagnosis! I understand that it’s still classed as a rare cancer but numbers are unfortunately on the increase & reliable information needs putting out there for everyone to be aware of the symptoms, GP’s also need alerting to the rise in cases, which in turn would hopefully lead to earlier diagnosis, increased survival rates & less invasive treatments.
Nicola
Hi Suz
It can lie dormant for years, that’s true, and it’s thought that most people contract it early on in their sexual “career”. For most it will never cause an issue, but some of us were not so lucky. It’s important too to note that the vaccine is not the be all and end all, and that condoms are not a guarantee against contracting it. I know women with cervical cancer who had the vaccine and assumed it was fail safe, but unfortunately nothing is, although getting the vaccine before becoming sexually active is the best thing to do. It’s not all about penetrative sex, which is why condoms are not the cast iron answer either.
I really knew nothing about hpv in my youth, and only learned about it when I was diagnosed with cancer, although to this day I have never been told by any doctor I have it. I know I do because my cancer is hpv driven, but I suppose it’s all irrelevant now. It causes something like 97% of cervical cancers, and the type I have (adenocarcinoma) is not one of the rare types where hpv is not the cause, so it’s just a fact I have it.
I put in a complaint about an advertising campaign a couple of years ago which suggested that getting cervical cancer was preventable, which absolutely enraged me. Victim blaming at its worst, but I was able to speak to the chief exec of the organisation on the phone, as many other women I know did, and the campaign was pulled. Rightly so. Women are shamed and stigmatised enough for having hpv and cancer, yet we all had to have contracted it from another person!
Right, I’ll step down from my soapbox now and chill my beans!
Sarah xx
Oh thank you Irene, I try my best on the forum to reassure and advise the ladies in the cervical cancer group, and some other internet groups, but I wish I had the courage to speak out on other platforms! There is such a lack of education and knowledge about hpv in general and one thing that really grinds my gears is when I see women calling themselves dirty or disgusting for having the virus. But since not even my in laws know about my surgery or having 2 stomas, I think I would find it too difficult!
Sarah xx
