New here from US- this seems to be the most active group (even beats American Cancer Society forum)

Hello Karen

A warm welcome to to the forum where all of us have been through or are going through the Nigro protocol for anal cancer.  I am sorry to hear that you have has such a rough time of it, and hopefully your liver resection will have seen off the cancer once and for all.

I was stage IV at diagnosis with a spot on the lung and underwent six months systemic chemo first to shrink everything and control spread.  I had a couple of months break and then had the standard chemo/radiotherapy, followed a week later by a lung ablation and then a further ablation on the other lung on a 'suspicious' area.  That was three years and three months ago (counting, me?!) and apart from a small area of lung inflammation which I am assured isn't cancer my scans have been clear.

My anus was never the same after treatment, so much so that last year I had an elective stoma which changed my life immeasurably for the better.  I had severe anal stenosis and urgency problems that I now no longer have.  At one scan there was a thickening in the anal tract but a sigmoidoscopy showed nothing but scar tissue.  Also during treatment and afterwards, my childbirth piles came back with a vengeance and I still have them now even the area doesn't have any 'traffic' as it were.

I hope very much that your irritation is similar and your anoscopy is clear.

Please let us know how you get on.

Irene xx

Hi,

My partner is Stage 4. She has liver mets (smaller than your one) but unfortuantely more than one.

Not very impressed with the Nigro Protocol if I'm honest - it seems to offer few solutions for Stage 4 patients.

Presently canvassing for immunotherapy.Retifanlimab has been authorised in your neck of the woods (US) but not here and appears to only be available on compassionate grounds.

Chemo appears to have made progress on shrinking so far so seem to be at a bit of an impasse as trying to look to other things "not in the Nigro protocol" (at least the UK interpretation of it) 

Have enquired about TACE but seemingly not an option for AC mets (trials seemingly done but no clear results as far as I am aware and of course it is not in the Nigro protocol which seems not to have changed much in fifty years) Liver ablation or possible resection is a possibility we hope for. Further chemo agreed thus far.

Glad that your treatment all sounds positive and every best wish.

Hi Karen,

Sounds like you're really going through it :( I really hope you get the best news... 

I'm stage 3 and nearly finished my chemoradiation therapy, so I've no advice to offer but wanted to stop by to welcome you and wish you well.

Jenna xx

Hi again Karen,

I’m sorry to hear that you have been through so much. Sounds like a really tough time and still quite early days post the liver surgery. Everything crossed that you are healing up from that.

Mine was T2N1 and I will say that after 6 months I do still have pain and irritation in the area. I have bleeding at times but after seeing the oncologist last week he confirmed that this is not piles but still some local inflammation and scar tissue. I had hoped that this would have settled by now but he did say it was normal for the timescale. Still having to take stool softeners and laxido every day as nothing seems to function as before’.

I hope the anoscope isn’t too uncomfortable and gives you some answers. Xx

Thank you, that does give me hope that the issues I'm experiencing won't result in an APR (which the doctor says is next if the AC does return in the anus).  And thanks for your encouraging words about the three years, three months!  Yay!

So very sorry your partner is going through this.  Good news on the chemo shrinkage.  Liver resection was no fun (I had open), but 5 weeks out I am feeling "normal" and walking 2 miles.  Oncologist is saving further chemo and immunotherapy for if scans show recurrence.  Hoping your dear partner is tolerating the chemo well.

Thank you, that is so encouraging.  I did start taking Metamucil every day and that has helped.  It seems to only hurt when I have to go, then is ouch while going.  I've had two anascopes since treatment ended.  The first no pain, the second painful.  That's what makes me worried.  Hoping to get same news as you with third anascope end of July.  Thanks again.

Hi Karen,

Thanks for sharing this.

I store anything up to help reassure when we cross different bridges.

You've found friends here for sure - everyone is so supportive to each other.

Every good wish for the future.