HPV negative

Hi Poopypants I am 49 and finished treatment in April, awaiting results. T4N0M0. They may not mention the HPV status so I would ask. They normally note it as "P16 positive" not HPV but not necessarily in the diagnosis. Ask on Tuesday - remember over 90% are P16 so the odds are in your favour. I had a stoma before treatment and thoigh I was terrified before the operation, it has been the easiest bit!!! As long as it has gone, that has to be the focus. My kids named my stoma Lubby! Willow x

Hello Poopypants 

My records have never mentioned HPV, and I have access to them all.  However, I am sure my anal cancer was HPV related as over 30 years ago I had abnormal cells removed from my cervix.

If it is HPV related, probably about 90 percent of the sexually active population carry this virus which may never rear its head unless there is a time when the immune system is low, and then there is more risk of developing cervical or anal cancer.

What you need to remember is that you are now in the system, with an easily treated very early stage cancer and you will be checked for a long time afterwards regardless of the cause.

I am sure that once you have this cleared up you will have all the time in the world for a future with your baby.  I know how frightening everything is right now, and please try not to Google too much; a lot of the information out there is out-of-date, alarming and sometimes plain wrong (easier said than done, I know!)

Sending you a big reassuring hug

Irene xx

Hello Poopypants

My anal cancer is HPV 16, my cervix and anus were tested at the start of my diagnosis. I'm being treated abroad and this is part of their protocol.

Like Irene I had cells removed from my cervix nearly 30 years ago, but nobody mentioned HPV. I also tested negative on my smears. So it was a big shock when I was diagnosed with HPV16 anal cancer. It can stay dormant for many years and on the very rare occasion turn to cancer. It's the same cancer that causes many throat and cervical cancers.

I'm not medically qualified but this is what I have learnt on my journey with anal cancer. Your diagnosis is a very early one, which means treatment is highly successful.

HPV cancers respond very well to radiation, better than many other gastro cancers. That's why treatment works very well in most cases and the cancer never returns.

Totally understand your fears for the future and pre treatment is just the worst time for going into a spin. Once you get your date for treatment, everything will feel so much more relaxed and you will feel more in control.

Ally xx

Hi Poopypants , 

A high proportion of anal cancer cases are HPV related although that by no means is to say yours is too. I asked at one of my surveillance appointments if mine was HPV related but was told that they don’t test biopsies at my treating hospital as it makes no difference to treatment or outcomes. I’ve never had any abnormal smear tests etc., & had one directly before my treatment began but this doesn’t mean mine wasn’t HPV positive. 

I know it won’t be of much comfort at the moment because you’re living in the panic & disbelief of receiving a cancer diagnosis but you’ve been picked up pretty early with no lymph node involvement & most importantly no metastasis so the likelihood is that you’re going to have a good outcome & will hopefully have many more years to spend with your loved ones. I too was a single parent at the time of my diagnosis so can appreciate your concerns. 

Wishing you the very best of luck at your appointment on Tuesday, let us know how you get on.

Nicola 

Hi there Poopypants,

My name is Gail, I am 63, and was diagnosed with Anal Cancer at the age of 60.

Diagnosis: June 2023 with T2N1aM0 (moderately differentiated squamous cell carcinoma of the anus). Similar to yourself but with a spread to 2 lymph nodes and no metastasis.

A little background: After 3 months of unsuccessful treatment, a suspected haemorrhoid with small tear grew to a larger ulcerated tear. I was then referred for removal to hospital. I rang the hospital after the wait time had expired only to find out the backlog waiting list was still being worked through and I could have a further 3-6 week wait! After speaking about my rather embarrassing & very uncomfortable situation with my work’s HR department I was told to go ahead and use the company private health care. I saw a colorectal consultant on Tuesday 23rd May who informed me that he believed it was cancer! An appt for surgery & biopsy was made for Friday 26th May, followed by scans, a needle biopsy of a couple of lymph nodes and then 5 1/2 weeks of radio chemotherapy.
This August will be 3 years post treatment. So far, all surveillance scans and examinations show no reoccurrence. 

After surgery my colorectal consultant spoke about my anal cancer, most likely, being caused by the HPV virus, including statistics and reassuring me it was curable but the biopsy was not tested for HPV. Like most women in the UK I was enrolled into NHS cervical screening program from the time of its beginning. Throughout this time I had only tested Negative and with the addition of never having anal sex I was in denial about it being the cause. BUT this last October my routine cervical smear tested Positive for HPV with low-grade Dyskaryosis. The follow up of this diagnosis is that I will have a colposcopy in October with possible treatment if necessary (but expected).

I get regular reassurance that I am in good hands, GP, Oncologist, Colorectal Surgeon, Consultant, safe and out of danger, but there are still issues to address… but that is my story.

Back to your queries.
I had no hesitation in having that thing removed, but to be honest did not stop to think. If I had been diagnosed earlier the lymph nodes would not have absorbed a little of the cancer and if it had been later…  a larger tumor and who knows?
The tumor was 2cm, you could see it from the outside and it travelled along the anal creases to the inside. I took before and throughout the healing photos, which sometimes helped when describing issues to my oncologist or colorectal surgeon.  
After the initial healing time at home I was always careful to be near to or locate the toilets asap, once I had started to venture out. Also, always carried a spare pair of pants, thin panty liners, small plastic bag, wet wipes, paracetamol, ibuprofen, anti-sickness, Imodium etc in pencil case in my bag. Now a few years on I still do the pants, liners, bag and a few wet wipes just because, if anything did happen, it would be difficult to sort out without it. BUT I have no lasting incontinence. It’s just that there is scar tissue in a tight muscle and if I have a dodgy stomach I might (and it would be very rare) to drop/squirt a tiny mucous plug like smear. I would, however, be aware that I am feeling a little Windy and use a liner on that day.

HPV…
Within my search for information I, recently, came across a very informative PODCAST which is the main reason for this reply. The PODCAST is called 'ANAL CANCER All you wanted to know but were afraid to ask’ published in 2024 so, pretty much, up-to-date. It is presented by Dr Mary Birdsall a Gynaecologist in New Zealand who is also an Anal Cancer survivor. There are 9 episodes. One particular episode is an interview with Professor Richard Hillman who is an immunologist and a sexual health physician at St Vincent's Hospital in Sydney, Australia, with special interests in HPV related cancers and HIV. The episode: ‘Anal cancer is a preventable disease, so why aren't we preventing it?

podcasts.apple.com/.../id1764868369

I found it particularly interesting with regards his description of the Anoscopy which will, hopefully, be one day used in screening programs and is already being used for targeted high-risk groups in Australia. He mentions the importance of diagnosing HPV16 with regards concerns for those people developing cancer.

I’m on the trail for the UK equivalent of Professor Richard Hillman as I have a bunch of HPV related questions but in the meantime may send these questions to him.

I hope your appointment with the oncologist goes well on Tuesday. I remember mine well, a little ‘rabbit caught in the headlights’ but relieved all was moving ahead.

If you think I can help further in anyway please don't hesitate to ask.

Take care and be strong.
Gailx