Precancer before cancer diagnosis

Hi RedLingua

I am so sorry to hear that you have a AIN3 diagnosis and I know how worrying this must be for you. I had an AiN3 diagnosis in 2017 which did eventually turn into cancer in the last few months. They took the surveillance option with me, which is all well and good as long as they do this on a very regular basis. Unfortunately due to cancelled appointments, failure to follow up and mistakes with my EUA's I ended up with stage 3 cancer as it went into my lymph nodes. This could have been caught earlier if this hadn't happened. I realise that I was unlucky and this doesn't mean that this would happen to any one else but my advise to you would be to chat to your consultant and to get reassurance that they will have a detailed follow up process. I would also keep on top of things and insist that you are monitored very closely and they give you good reasons backed up with evidence to support your care.  AIN3 doesn't necessarily mean that it will turn into cancer, so please try not to worry, just make sure that the 'surveillance' is regular and you have good communication with your consultant.

Serena x 

Hi RedLingua93,

Although I don’t have any experience of AIN3 personally you’ve had a great response there from Serena7, thank you Serena for sharing your experience. I would just like to extend a warm welcome to the Macmillan online community although I’m sorry you’re going through this right now. 

Nicola

Hi Serena,

Thank you so much for your message and sharing your story. I'm so sorry to hear that it has progressed in your case. When I saw the consultant in May he said a check up every 6 months. Given I also have VIN3 and I get seen every 2-3 months for that, I pushed him to see me in 3 months. My next appointment has been booked in late Sept which would make it 5 months so not very happy about that. I'm not sure what he did during the EUA, he was doing a colonscopy at the same time to investigate my bowel issues. Not sure if he did an anoscopy with the acetic acid before he took the 8 biopsies. 

He was very against any treatment and when I asked him why he just said "because it always comes back". I didn't feel very reassured by any of his answers to my questions so I saw another consultant for a 2nd opinion at my local hospital. He said that the only way this can go is cancer and given how symptomatic I am, excision of the most troublesome lesions should be considered and not shot down. He didn't feel that it would be right to take over my care though as when it's AIN3, they refer patients on to the exact guy I'm currently under as he is apparently the local expert. He actually knows him and said he does have an odd manner about him that makes him come across as cold. He did however say that if I wanted more biopsies done by him, he would be happy to have me back to do them. He's written to my consultant about my deep concerns etc so will be interesting to hear what he says about the letter when I see him in September.

I am definitely going to ensure that at every follow up he does an anoscopy to look at the lesions, especially just inside the rectum where the bleeding comes from. I have a feeling that all that he'll do is look at the outside and have a feel with his finger inside and not much else.

Did you have any signs that it had progressed? Like did any symptoms get worse or any new symptoms pop up?

Hi RedLingua

It sounds as if you are pretty much on top of things with your consultant and I am pleased that you went for a second opinion, although it sounds as if it hasn't really helped. My AIN 3 was picked up in a routine colonoscopy that I was sent for. I do not know why I was sent for the colonoscopy and can only assume it was because a few years previously I had seen my GP as I was experiencing a change in bowel habits and slight bleeding. They put this down to IBS. I had no other symptoms and this continued for years but the bleeding was quite minor and I put this down to constipation.

I had no other symptoms until the autumn of last year when I started to experience an urgency to pass bowel movements. I had no pain, discomfort or any other symptoms which I could relate to this. In fact I had not been followed up for many months and i assumed that there was nothing to worry about as I had not even been given the results of an EUA I had at the end of 2018. I felt fit, extremely healthy, was so busy working round the clock and did not imagine there was anything wrong at all. The only reason this was picked up again is down to the fact that I had another unrelated medical problem and I was sent to a diagnostic centre at the same hospital I had my EUA. After checking through my medical history they asked me about my EUA  and lack of follow up's. They couldn't understand why i hadn't been seen for so long and referred me back to the colorectal clinic. After seeing a colorectal consultant he found a lump which I had not know existed, and from then on it was discovered I had cancer. If I hadn't been sent to the diagnostic centre I wonder how long it would have taken me to realise something was wrong!

The very first time I experienced any actual pain was after an EUA i had in March. From then onwards I started to feel the tumour and have a feeling that I had not completely finished a bowel movement. These are the only symptoms that I am able to report.

From my own experience I can honestly say that I really could not determine that there was anything wrong with me at all, as I had felt the same way for many years. Perhaps I had AIN3 for much longer than I thought! i will never know. But from what I can gather from reading about the experiences of many others, we are all different and our symptoms come out in various ways. As you are experiencing symptoms which are so concerning, I would definitely keep insisting that you have very regular biopsies. Just keep on and don't give up. This is your life and they need to be able to reassure you that their course of action is tried and tested and appropriate for you. 

I think you are doing all the right things

Serena x

I am a bit concerned about a consultant saying he won’t treat it as it always comes back!! Is he referring to treatment for anal cancer? That for-many of us on hear is quite upsetting.

Wow that is really bad! Thank god the diagnostic centre picked up on there having been no follow up. It is really disappointing as they always say prevention is the best way to beat it. So sorry they let you down with lack of follow ups! 

I suppose I can take some comfort in knowing that I have had biopsies and will continue to have follow ups despite all the disruption from the pandemic. I think also having symptoms since last year means I'm fully aware there's a problem and can thus ensure I do get biopsies and anoscopies regularly. My gynaeoncologist did say if I'm unlucky and it does turn into cancer it will be detected early and will have not spread into lymph nodes. I really hope he is right! 

Many thanks Serena for taking time to write to me! X

No no not for anal cancer. He's referring to the AIN (precancer lesions). It does tend to have high reoccurrence rates so most colorectal surgeons don't remove AIN unless it turns to cancer. 

Bit messed up I know but as my gynaeoncologist explained, any surgery around the anus runs the risk of anal strictures and damage to bowel function so colorectal surgeons are often hesitant to surgically remove AIN because it tends to come back. That would mean even more surgery. And then if a patient was unlucky and another AIN lesion came back and then turned into cancer, any more surgery would be very likely to cause permanent damage and need for a colostomy bag. 

Thank you so much for that explanation. That did frighten me and thought you had a consultant who was being a bit as the other doctor said, cold! I hope you manage to find satisfactory solutions to your problems. 

I was just thinking the same thing!!!

Hi RedLingua

I had carcinoma in situ removed in 2016, recurrence of AIN symptoms about 1 year later, and between then and now, had repeat biopsies, a surgery for removal of AIn which resulted in a permanent, non healing wound, which I had for 21 months, until  I was finally told I had cancer on 26 January 2021.  I had a T3 tumour, 6.5 cm with nodal spread N1c, and unfortunately, similar to Serena, my journey wasn't without incident or error, taking 6 months for me to go into treatment after suspicions being raised at my regular review on 2 September 2020.

The medics watch the appearance of the lesions, the AIN from my experience appears as nobly or warty lesions on the skin, the cancer tends to be dimpled.  Also from my experience, the AIN symptoms were around my bottom, but I knew I had invasive cancer when I started to get a gripping pain in my right butt cheek.  

The biopsies can be painful, not as bad as surgery, but if you have extensive AIN, I hope your consultant has put you in for yearly scans and possibly 12 or 6 month biopsy?  There is a national speciality in Manchester that offers treatment of AIN with laser.  I was told this is  painful, and requires multiple treatments to treat extensive AIN, and that having that treatment doesn't remove the risk of cancer.  I assumed this is because the treatments were going to be over 12 months, but the actual reason was never explained.

The cancer treatment was tough, but now, nearly 4 months post treatment, I have a bottom again, instead of a mass of painful, itchy, bleeding lesions.  Going to the toilet is not as easy as before this all started years ago, but it's manageable now and hardly painful.   I am also told this type of cancer is highly curable, so I am hoping for the best, and hope this gives you some reassurance.  Very best of luck.

Rx