Under investigation for suspected diagnosis. What tests and/or procedures should I expect?

Hi Io, 

Please don't ever worry about 'sounding silly' or being confused. This is not a journey anyone has practiced for!

I had a colonoscopy about 6 months prior to my diagnosis which didn't show any problems, so while colonoscopies are good and helpful, they're no guarantee. Like you, my pain continued and escalated, so even though the gastro practice who did the colonoscopy said 'See you in 20 years' I persisted.

This does NOT mean that, like me, you have anal cancer. But it does highlight, I think, the need to keep on advocating for yourself.

I gently suggest that being your own advocate means being brutally honest with your medical personnel. Don't let yourself get fobbed off, but also don't sabotage yourself by downplaying your symptoms. I KNOW my wonderful gastroenterologist, the one who finally found the cancer, was annoyed by my 'over-reaction' to the digital exam and anoscopy. I couldn't handle the pain and had to get examined under anesthesia. But that was where the cancer was found. 

TELL YOUR DOCTORS WHAT'S GOING ON WITH YOU!

We really can't blame them for not following up if they don't know there's a problem.

Yours may well NOT be cancer. I hope and pray that it's not. But whatever it is needs to be diagnosed, and if it IS cancer, the sooner the better.

In my case, Dr. Pierre took biopsies during the exam under anesthesia and that was how they found it. I was T2N0, so fortunately very early. The aggressive but effective treatment seems to have got it all, as I'm now a year and a half past treatment. My one year scans showed NED (no evidence of disease.)

Please ask your GP to recommend a good gastroenterologist and be 100% honest with them. This is not the time to tough it out. If it's not cancer, great, but you still need and deserve a medical team that will work to find out why you are in pain.

You do not have to suffer in silence.

Hugs

Suz

Hi lo123 welcome to the group. It can be very frustrating when you leave the doctors feeling that you still haven’t had your worries covered. I cannot say about the colonoscopy but they are done usually to see if there’s a need to do follow up tests like scans when they are suspicious of anything abnormal. I do know about fissures as I developed one when I had chemo radiotherapy which caused constipation and literally split my anus. They are incredibly painful and I was given a diltiazem gel which I reacted quite badly to with migraines due to the get being a stimulant given to heart attack patients! It is used in gel form to relax the sphincter muscles. Your doctor probably advised you to not get constipated and eat plenty of stool softening foods and plenty of fluids every day. I ended up using baby Vaseline every time I opened my bowels. I do think you need to ask your doctor to clarify what she meant as I understand what she said about using conventional methods first for the fissure before resorting to the stronger stuff like the gel but not about the cancer as you wouldn’t just wait and see! My doctor would not do an internal as she could see it any didn’t want to cause more pain. I think you will have peace of mind to have your answers to your concerns than this stress it’s causing

Hello lo123

I am so sorry you have this worry hanging over you, but I totally agree with the others in escalating your concerns with the consultant.  I have no personal experience of an anal fissure but I know they are extremely painful and it must be very hard for you to have it going on for so long.  I wouldn't downplay your symptoms at all when you see the consultant and completely share your concerns with her and tell her how painful it is.

At a guess I would say the next move might be a biopsy of the area, but I have no medical experience, only what I have gained on here.  Is your consultant a colorectal surgeon?  I am sure she wouldn't be offended in the least if you asked her exactly what she means by 'we will see where we go from there'.  If you aren't due to see her very soon, you could ring her secretary with your questions.  

I don't think you are being silly in the last, lo123.  Please come back and tell us how you get on.

Irene xx

Hi there.  Slightly different experience. I’d had a routine colonoscopy which didn’t show anything.  I had been experiencing blood in my poo.  My GP insisted I had piles but the symptoms had gone on for too long. The GP was not happy that I doubted them when I requested a referral to a colorectal specialist.  At the time I had medical insurance via my employer.  August last year I had a digital rectal examination, quite unpleasant & painful.  The specialist told me there & then that he thought it was a rectal squamous cell carcinoma. He confirmed that I had a lump in my anus and this was not piles. Like you, I was asked about bowel motions, pain etc. You are not being silly at all. Please speak to your specialist & let them know your concerns & worries.  My specialist referred me to NHS cancer pathways & I was referred to an oncologist who referred me for a sigmoidoscopy where biopsies where taken which confirmed the diagnosis. A sigmoidoscopy looks at the lower part of your anus/rectal area.  This would rule out any lumps & bumps & confirm a fissure.  As Suz says, your symptoms do not mean that you have anal cancer.  Ask your GP for a referral to a colorectal specialist.  If cancer is ruled out,the specialist will let you know about any recommended treatment,  The oncologist referred for CT scan, MRI scan and PET scan.  I then underwent chemotherapy & radiotherapy. I have had follow up scans and in June this year I was told NED (no evidence of disease). I will have follow up CT scan in September & a follow up with the oncologist to discuss the results. If NED then yearly CT scans/consultations for 5 years.   Don’t get fobbed off.  You are entitled to a 2nd opinion.  Please let us know how you get on.   Love Karen. 

Hi everyone, 

I just wanted to say thank you for all your messages and that unfortunately nine months down the line and I am still struggling to find answers due to difficulty advocating for myself!

My colorectal surgeon ended up treating the fissure with Botox at the end of last year as it wouldn’t heal but it has now since seemed to come back. She was going to do a flexible sigmoidoscopy at the same time but for some reason didn’t, I’m not quite sure why. 

My colorectal surgeon has kept me under her review which I know is very good.

I had a repeat FIT test done February this year and it went up to 200 from 27 in October 2022. I’ve also lost a lot of weight and very tired. 

I saw her over a week ago and she did an internal examination which was uncomfortable and painful, but I didn’t tell her as I find it difficult and also a proctoscopy which she said everything looked normal. 

I’m worried because since the new year, I have noticed a lump which appears but only when straining. I’m aware this could just be hemorrhoids but it’s causing lots of problems. I haven’t told her this yet as I kind of felt silly saying this when she had just told me it all looked normal. I left feeling very confused. 

She ordered a virtual colonoscopy which I had Thursday this week. The same day it was sent to my consultant (and also gynaecology which I’m unsure why). I’m not sure if the speed in which the report was sent to her is something I should be worried about. I had a normal colonoscopy in December 2022. 

Is it possible to still have anal cancer if a digital rectal exam and proctoscopy is normal? Can anal cancer be detected through a virtual colonoscopy too? 

I honestly genuinely think something is wrong and of course it may not be cancer but I just feel I am getting more and more unwell. 

If I tell her about the visible lump i’m seeing when I go to the toilet, how would she diagnose what this is if she’s already said the proctoscope exam was normal? It really doesn’t make sense!

I have an appointment with the consultant in just over a week. It was booked before the scan so it isn’t any indication of it being booked quickly because of anything seen. 

Just wondering whether I should be pushing for other tests/scans as I am struggling to get answers or how I actually feel which is why I guess she isn’t maybe acting as fast or in the way she needs to so it’s not her fault in the slightest. 

I’d really appreciate any advice or experiences!

Hi lo123, reading your post I feel you are becoming more stressed with worry about the anal cancer coming back. When we go to see our oncologist team I think sometimes we get this mental block and when we sit in the consultation room we nod our heads and when we leave we wished we had asked this or asked that. My advice is when you are due to go back,  is to write down your questions and concerns in simple short sentences. When we sit in that room we can start rambling this and that happened and the oncologist will just grab the end of that last sentence and you don’t get your answers and go home all confused. Your first question would be

1. Doctor, I have been really concerned about this lump that comes up when I open my bowels even though you said everything feels fine. What could this lump be?

2. Doctor, internal examinations are very painful for me, is there anything you can do to help make them less painful?

Simple questions put the onus on your doctor to answer and just say can I just write that down now as I know I might forget what you said. This helps the doctor be aware you are feeling concerned and want to know what is happening.

Good luck with your appointment next week.

Julie

Hello lo123

I really feel for you, honestly.  You have outlined exactly why you are worried but obviously find it really  difficult to articulate what you are going through when you are face-to-face with a consultant.  Jaycee12 has given you some first-class advice - to write down your concerns and go through them one by one.  And don't worry about saying I didn't understand what you meant/said there.  It is your body and you are obviously really going through real discomfort.  Please, stop worrying about feeling silly and, even if you give your consultant your list of questions rather than vocalising them, do it.

I would add that it is very easy for me to say do this or that but I know only too well how we can all be struck dumb when put on the spot.  So get prepared, and please come back and let us know how you get on.

Sending strength and a big hug

Irene