Metastatic anal cancer

Hi there and welcome to the group. You certainly have a lot on your plate, totally understandable that you becoming a bit freaked out. Practically speaking, is there any way someone else could drop off your child that you need to transport to school? I would imagine the chemo will make you tired. In terms of the actual chemo, if there’s any serious adverse reactions, which seem on the whole to be quite rare, they will look at changing the drugs & any signs of infection with the Picc line make sure you contact the colorectal nurses ASAP.  There have been some people on here who have had mets to their lungs/liver with a good result after further chemo. Hair loss is a tricky one. Personally I would probably want a decent quality wig but am aware they can be itchy so would also cut hair shorter before it fell out & then wear a headscarf or hat. I hope you have people you can talk to as the psychological side of the Big C can be dreadful. If not, you can always post any concerns or anything at all here.  Xx

Hi and welcome to the group.  You will be glad that you joined - I am and have had lots of good advice and support over the past few months.  I had chemo-radiotherapy last year and have recently had six cycles of chemo - I did lose my hair but Macmillan helped me find a wig and I have become an expert at twisting scarves into turbans!!  If you have any questions feel free to ask.

If you don't mind me asking - how did you manage to persuade them to do surgery liver resection - after chemo/radiotherapy last year my original tumour "left the building as it were" and still has but it then turned up in my lungs and liver earlier this year so I had  the 6 cycles of chemo -  good news is my recent pet scan showed that I only have one surface tumour left in my liver which is easily accessible and the plan was to remove it but the consultant hepatologist has vetoed surgery on the basis that I also had lung mets before chemo (which have all gone)!!  There was no medical reason given. My oncologist was surprised by the decision and I am considering second opinion maybe it is a hospital thing - are you at a specialist cancer unit?.

Hi there , 

Welcome to the online community, I think we’d all be fibbing if we said we didn’t feel lonely following diagnosis but it stopped for me when I found this lovely lot here. I’m 2 years post treatment & have been volunteering as a community champ on this group for probably just over a year. As 1in1500 has said you’ve got such a lot going on right now it’d be enough to make anyone freak out I’m sure. I think the worries you have trying to organise things for the beginning of your treatment are totally understandable, We’re so used to keeping all the balls in the air at once that when something comes along that makes us likely to have to hand over the juggling act to someone else we panic don’t we? I hope you have family/friends that will help with your children etc. If you have a cold will they delay your flu jab until you’re over the cold? Not sure how things have changed with the whole Covid situation! I know when I’ve gone for mine I’ve always been asked if I’ve been ‘unwell’ before they’ve agreed to give it!…

Regarding hair loss I think I’d be contemplating the same as you, I’d possibly go for a short cut prior to chemo (literally only if you have time though, you sound busy enough right now!) You should  hopefully have a Macmillan contact in your hospital, you could maybe speak to them or your chemo department about wigs? When I had my assessment appointment on the chemo unit at the hospital I received my treatment at one of the nurses told me who to speak to on the unit if I was concerned about hair loss & they’d advise on wigs etc.

We’re always here if you need us so please don’t feel alone through this, pop on here even if you just need a rant to people who totally get it! 

Nicola 

Hi Deb1E, good to hear the positive news from your scan. I can’t understand why an explanation hasn’t been provided about removal of the surface tumour. In the event of an unsatisfactory response I would definitely seek a second opinion, you are absolutely entitled to that x

Since the new format came into force a couple of months ago I haven't been able to log in - have had so many verification codes- none of which worked!  Concerned now that so many posts are about metastases to liver and lungs.  Since I joined in 2018 this had never been a concern, voiced by anyone.  In my naivety I thought that once you had been declared Ned you were in the clear!

Hi, unfortunately with anal cancer there can be metastasis to the lungs and the liver. The chances of a recurrence of the original anal cancer or metastasis are highest within the first two years so that is why the lungs and liver are CT scanned each year for the first two years post-treatment. Thereafter, there is a decreasing risk  for the following 3 years of reoccurrence or metastasis. It would be fantastic if as soon as you were declared NED you were in the clear but this not the case. 

Hi ,

It’s good to see you back, I’m pleased you’ve managed to get logged back on, there’s been some glitches unfortunately since the site was upgraded.

I was also unaware until fairly recently of the chances of metastasis after getting the ‘all clear’ from AC! From what I understand these instances aren’t commonplace & the couple of members I know that have unfortunately had this diagnosis have had it well within the first 2 years following treatment for their AC. 

It wouldn’t be truthful to say I haven’t worried about this myself but keep reminding myself that it isn’t a common occurrence & the further along the line we get with NED then the less chance we have of any recurrence or metastasis. This has prompted me to ask a couple of questions when I next see my oncologist just to get his opinion. 

Nicola