Anal melanoma follow up

Good morning Batty. Welcome to the rather quiet Bumlanders group. Sounds like you've been through an awful lot lately. You are rather one on your own with your particular speciality I think. Apart from the blog that you've read, I'm not aware of anyone else.

There are folks who have had an APR, but not for that cause.

We have an Anal cancer specialist in the Ask the Expert group, if you click on the tab at the top of the page, you can ask him. He is very good, and very open with his answers.

Very best wishes,

Mary

Morning Liddyloo,

You are right it is very rare and am having trouble finding survivors at the moment but I remain positive. I've sent a msg to the expert too so hopefully he'll reply. I hope you are doing ok and thanks for reply.

Bev 

Hi , 

I have recently been diagnosed with ARM and weighing up APR versus intensive surveillance ( have a clear margin after several attempts) but not much info out there as so rare and they say ‘ every case is different’.I don’t think I have the gene mutations that favour targeted therapy but no other therapies seem to be given at this stage so observation for the moment …. 

Hi MKK, 

Welcome to the Macmillan online community although I’m really sorry that you’ve had the need to find us. 

I wasn’t on the site when the previous post was put on & I can’t recall anyone posting in my time here with anotectal melanoma but that doesn’t mean they’re not here as many people just observe & don’t post. It’s so difficult trying to connect with others in the same situation when you have a rare diagnosis isn’t it? It would maybe be worth posting in both the Bowel (colon and rectal) cancer forum& the Melanoma forum to see if there’s anyone in either group that has this diagnosis that you could connect with. Having said that you’re more than welcome to keep posting here, there’s always a listening ear & someone here to offer support if & when you need it. 

Nicola 

Hi

ive not been in this forum for some time . I was diagnosed with ARM in 2016 and am now a 5 yr survivor!! I had WLE but did not get clear margins, I was not suitable for chemo or radiotherapy so had APR and colostomy surgery . It is radical Surg and I was off work for 10 months mainly due to delayed wound healing. Please message with any questions and good luck xx 

Thanks for the reply so good to hear from you as so few to share this with .xx