6 weeks post op part 1

Hi positivepal23 I’ve just replied on your other post

Hi again, so the reason I went to my GP in June was because every time I went to the toilet I  had a lot of bleeding and this mass would pop out with blood everywhere and it would become more difficult to push back up. Has anyone had the same problem. I had a fit test in January and it came back negative..I was sent another fit test in July and that came back positive. I thought I had inflamed piles so when I got my diagnosis after my colonoscopy we were in deep shock. We  could not believe our worst fears of a n anal tumor about 4cm. This was probably the hardest time to go home and tell everyone but still being in deep shock and trying to stay positive. Waiting for my next appointment was really difficult. I wonder if anyone has had the same experience

Hi positivepal23,

Welcome to the Online Community, and thanks for starting to share your story. This is just a quick post to let you know that I have moved this topic over to our Anal cancer forum, and I have removed the duplicate threads you accidentally created.

To keep things nice and clear for other members, you can continue your story by adding new replies to this thread. I'm sure the friendly folks of the Anal cancer forum will relate to a lot of what you're saying.

Don't forget that if you need any help or support from Macmillan directly, you can contact our Macmillan Support Line. Our Support Line staff are available from 8am to 8pm, 7 days a week, on freephone 0808 808 00 00, by email, or via live webchat.

Our thanks go to Kareno62 for their help with getting you posting your story all in one place.

Hi Karen, thanks for the reply and for helping with navigating me around the forum. 

Hi Matthew , thanks for your help and advice. Always nice to have someone who knows what they are doing .

So after I had all my tests and scans through August and September. 2 MRI scans , 2 CT scans,1 proctoscopy scan and 1 Sigmoidoscopy scan . Waiting for each appointment seemed to take ages causing me great anxiety as I am sure that most people feel the same. Eventually I had an appointment with my consultant after the MDT meeting to decide my treatment. 

I met with the consultant and the cancer nurse and they had given me three options. 

1 : Papillon which is targeted radiotherapy of the tumor with possible further treatment. 

2: Surgery to remove the tumor but because it was so close to the anal verge they would have to remove alot of the sphincter muscles which would make me suffer from incontinence and bowel control. 

3: APER operation which is apparently the gold standard which is to remove the anus , rectum and the bottom end of the colon and give me a permanent stoma. 

All three options I was dreading with the third option life changing which I absolutely did not want. So I was given a load of information and leaflets and went home with my wife to talk through each option. 

Has anyone had to make these life changing options. You basically have to rely on the advice of experts and specialists but ultimately you have to make the decision and you wonder if you choose the right one.

Hi PP,

Yeah, sorting through options is one of the hardest phases of this long, difficult journey. I was lucky, I guess, in that I wasn't really offered any, just the gold standard which turned out to be (so far) fine.

Obviously only you can decide, and you're faced with three difficult choices. I don't envy you.

I just jumped in here to say that option 3, which sounds so dire, has some hidden advantages, the main one being that incontinence and the pain of recovering from the gold standard when moving one's bowels are no longer problems.

I don't have a stoma, but my best friend does, from an almost fatal bout of ulcerative colitis. She hikes, swims (and makes bathing suits for people with ostomy bags!) and, dare I say it, has sex every day of her life, that feisty girl. So it's not the awfulness we all immediately think of at the prospect.

One tends to want the treatment that will be the least painful and disruptive. But recurrence is everyone's worst nightmare, and that's where just jumping in the deep end gives you the most hope.

Whatever decision you make, try not to second-guess yourself too much. Easier said than done, I know. 

Hopefully more folks who've had experiences close to yours will jump in with more useful advice.

Hugs

Suz

• Hi Suz, thanks for the great reply. As I am trying to tell my journey as I remember it in separate posts for each stage I  am pleased to let you know we have decided to go for option 3 which is the APER with a permanent stoma. I was a bit confused you said that you didn't have a stoma as I thought that was the main part of the procedure. Anyway let me know either way. Thanks PP

Hi Pal,

Nope, no stoma, the 'gold standard' treatment for anal cancer is 5-6 weeks of radiation with chemo bookending it. If this doesn't do it, the next step would be to remove the anus and get a stoma. It sounds in your case as if this is your best chance for kicking anal cancer to the curb decisively and going on to have a full and enjoyable life.

Takes courage to make that decision. I thnk all of us had the initial NO when we hear about it being offered, but it does have some great advantages!

HUgs

Suz

Hi Suz, I guess you have been luckier than others although you can relate to other people's stories. 

So after deciding for the APER I had finally got a date for my operation after going for a pre op assessment and to see the anaesthetist. They actually had an exercise bike with a monitor on in his room to prove you were fit enough for the operation. Luckily I didn't have to use it but he said the person before me did. The day before my operation after psyching myself up and getting packed up for my stay in hospital they rang me and said we have to postpone the operation for a week due to the NHS strikes. So I had worked right upto the day before and said goodbye to everyone at work. Then I had to go back into work for another week. Also because my CT scan had passed the 30 days I had to have another one..That was a hard week but being at work took my mind off the gravity of the situation. More to follow...