Confused

SarahH21 your input here is welcome absolutely anytime, you’ve extensive first hand knowledge of the damage HPV can do,

I really wish certain areas of the medical profession were more proactive considering the increase of rarer cancers due to this virus.

So many people that have come through this group have been misdiagnosed with fissures, haemorrhoids etc., for months prior to diagnosis leading to later staging when, if picked up early enough, is a highly treatable cancer! 

Nicola 

Hi Nikki65

Thank you for that. I’ve been in several different cervical cancer groups over the years and the possibility of anal cancer is something that comes up quite often. In general, certainly at gp level, there seems to be a huge lack of knowledge about hpv in general and how the virus works. So many times I’ve read of women being completely dismissed because anal cancer is rare and highly unlikely in a woman according to them. This group proves that’s not necessarily so! 

Hpv is sneaky, can be persistent and has no cure, so I’d always encourage anyone with anal symptoms to be investigated further. There really is no excuse for assuming piles or fissures etc without testing further to rule cancer out-as you say, like cervical cancer, it’s highly treatable when found early. That’s the key. 

Sarah xx

Hi again SarahH21, I was very lucky & was picked up by a very astute locum GP at my practice who referred me immediately to the lower colon team at my local hospital although at first they diagnosed me with an external polyp & internal ulcer & only when they operated to repair the ‘ulcer’ did the surgeon suspect something different & biopsied me instead & things snowballed from there. 

My oncologist knew I volunteered here & was always happy to answer any questions I had on how things could be improved in way of early diagnosis & he said many GP’s would put the symptoms of anal cancer down to other things without an examination as they would probably only see a couple of cases of anal cancer during their careers & said that the very least that should be done in these cases is a rectal examination & that would lead to further referral. But I agree with you GP’s should definitely be made aware of the rise in cases of HPV driven cancers! 

Nicola

Hello Sarah80

Firstly I’m sorry that you find yourself here and in this predicament. You are perfectly entitled to a second opinion. Knowing that you are HPV+ is a red flag and definitely warrants a biopsy. 

I was turned away by my GP twice (over a 4 month span) despite having had a cervical scare some years before (unbeknown to me even years later that this was HPV related and no one advised me at the time that this could then pose a threat of anal cancer or other areas). 

My GP refused to refer me. So I had to go private. So far my treatment to date has cost nearly £100k (when really I should have been put in the NHS 2 week fast track referral) At that time we were just emerging from various lock downs so I had to wait a few weeks to see a consultant who examined me and thought it might just be a fissure but that he would do a colonoscopy under general when he could get theatre space. Which was going to be at least a 1-2 month wait. But just a few days after seeing him my left leg went numb at the top. We now know it was a second tumour in my pelvis  (primary was in my anal canal) luckily I called his secretary and said could she ask him if I should be worried about the numbness in my leg… cue action stations! He found Theatre space within a week. Got my biopsy results within 2 days. I was Stage IIIc (just scraped by the skin of my teeth not being stage IV and palliative only!) so had any more delays happened it could literally have been curtains for me. In total it was 6 months from seeing my GP that first time I was turned away to getting my stage III diagnosis. I can’t help but think my chances of an earlier diagnosis would have been hugely improved had these delays not happened… 

So the moral of that story is… insist on a second opinion. Private or NHS you are fully entitled. It’s always better to be proved wrong than hang back and find yourself in a dire place. 

Good luck and keep us posted! 

PPR x  ps I am 14 months post treatment and cancer free! So fingers crossed!!! 

Wow, Nikki65it’s really lucky you were seen by that locum and at least were referred. Just because a cancer may be rare, it doesn’t mean that symptoms should be dismissed. We tend to put our trust in doctors to know what they are doing and believe what they tell us. I was lucky too in having a doctor who took post menopausal bleeding very seriously, got me into her PMB clinic the day after I called to make an appointment and referred me on the 2 week pathway immediately. I was someone who would have accepted what I was told and not pushed things further, but I’m not that person now, given my own experience. We need to be proactive with our own health. I wish I had been long before now and I might not have ended up where I am! 

Sarah xx

Pretty Pink Roses, I am horrified by what happened to you - did you put in an official complaint about your GP?  I can't fault my GP who gave me a face-to-face appointment two hours after a telephone appointment about slightly thin stools. Ten days later I was having a CT scan.  I am so happy that everything is clear for you now.

I am stage IV and my oncologist has never said to me that my treatment is palliative.  She said on my very first appointment with her and I quote "I am hopeful that this cancer can be eradicated, we will treat you systemically first to prevent further spread (I had one small spot on one lung and what they thought was an infection in the other) and then follow with chemo/radiotherapy and ablations on your lungs".  That is exactly what happened.  We thought her summing-up carried a lot of weight as she is part of a world-wide team that changed treatment for advanced anal cancer and it is her specialty.  My husband was able to participate in the meeting by his mobile phone and transcribed exactly what she said.  We have discussed this so many times when I have been feeling low and he constantly emphasises to me that she had no reason to say these things if they weren't possible. 

I haven't posted much about my diagnosis on here as it is very much a 'wait and see'.   But I have to stay hopeful that I can be one of the stage IV patients who can continue on this site for many years and in turn give help and hope to other stage IV members when the future looks very bleak.

Very best wishes

Irene

Wow, Roses, that's a hell of a story! I can't believe your GP refused to even refer you! It's terrible that you had no option but to go to a private route and have to spend all that money!

What a tightrope. So grateful that you're here to share your tale.

I’m getting more and more angry over the dr’s attitude. Although my GP is going to refer me it could be a week until I get the letter and then I don’t know how long until I get an appointment for a consultation. Im finding all the waiting and uncertainty really difficult  

Oh wow I can’t believe your GP refused to refer you. I will definitely be pushing but even though my GP is going to do me a referral even that can that can take a week then I don’t know how long before I can get an appointment for a consultation.  I’m finding all the waiting and uncertainty really tough 

Are you relying on your doctor to find a consultant for you?  If not, I would find the best consultant in your area and make the appointment yourself - not all expect a referral by a GP.  I would also ask the hospital who gave you a sigmoidoscopy to make your scans available to the consultant you choose.  I made an appointment when I was thinking of a second opinion without a doctor's letter.  I really feel for you, the waiting when there might be something seriously wrong is intolerable.  Please let us know how you get on.

Irene xx