Anal cancer waiting surgery

Hi there Cadeshelp & welcome to the Macmillan online community although I’m really sorry that you’ve had the need to find us. 

I hope you don’t mind me asking but what was your diagnosis? Is this APR surgery you’re facing? Facing surgery can be a really stressful time. The stoma surgery itself can be very daunting but we have a few members here that have had to have a stoma fitted, some temporary due to their tumour causing an obstruction while they go through treatment & others are permanent due to surgery such as APR surgery & most report that have got to grips with them really quickly & continue with life as normal. If the thought of having a stoma is making you anxious we do have the  Ileostomy, colostomy and stoma support here on the site that you might like to join also where there’ll be lots of helpful hints & tips I’m sure of getting to grips with the adjustments of living with a stoma. Regarding the surgery we have a couple of members that have had successful APR surgery but to be honest I’m not quite sure who is still active on the forum, hopefully someone will see your post & offer some reassurance. 

Please know we’re always here to support you in what ever way we can. 

Nicola 

Hi Cadeshelp

I understand your worry.  I have had major surgery for anal cancer and have a colostomy.  I had ELAPE surgery which stands for Extralevatator Abdomino Perineal Excision.  This is bigger than APR surgery because it entails plastic surgeons doing what is known as flap surgery so the operation is in two parts with two teams. In fact it is the biggest surgery for this cancer and took 11 hours. .  I am five months on from my operation now and feeling good.  Having a stoma is not that bad.  There is no pain from it, but it takes a few days to get used to changing your bag,  The worst part of this operation by far is the pain sitting down because that lasts for quite some time so you have to lie on your side instead of sitting too much.  You will have strong pain relief given to you in hospital and you will be prescribed some to take home.  I’m sure you feel daunted by what’s in front of but believe me it is worth it if it gives you better quality of life.  In my case I had no option having had treatment for almost five years and I am so grateful to my team at The Royal Marsden in Chelsea.

We are so lucky in this country to have the NHS.  Whatever operation you have you will have excellent care.  If I can help reassure you let me know.

I'm going to have APR surgery due to my anal cancer, date not known yet I'm awaiting the result of a lung biopsy procedure over four weeks ago.

Feeling very low, had to get anti depressants  and sleeping pills to help me cope.

Want to feel positive, strong, optimistic but can't help feeling the opposite. 

Anything comments to cheer me up please

I’m really sorry you’re struggling so much Cadeshelp, having said that you’ve got a lot on your plate right now.

We all cope in different ways & there’s no right or wrong way to feel when you’re going through something like this. It’s good that you recognised that you needed some help in coping & hopefully once your medication begins to kick in you’ll start to feel a little better. 

That’s a long wait for your lung biopsy results, did anyone give you a timescale for your results? If it’s been longer than expected don’t be afraid to chase things up with your Dr.

Mauranne has replied with a positive but honest post & it’s great to see that she’s doing so well after only 5 months! I know it’s so, so difficult when there’s so much going on but try & draw comfort from posts such as this, you will get there I’m sure. 

Nicola 

Got my right lung biopsy result Tuesday and was told the anal cancer had spread. Three lesions removed. Also told there is a lesion in my left lung.

Today Thursday I've had a CT PET scan.

So now I'm facing APR surgery and awaiting the feed back from my scan today.

Don't know how I'm going to get through this. .The Dr has prescribed a anti depressant  and a sleeping pill so at least I'm sleeping.

Anyone had a similar diagnosis who can offer me words of a positive nature. Don't want to feel worse than I already am.

Hi Cadeshelp I’m so sorry to hear what you’re going through. As the doctor has probably already told you, the anti-depressants will take a couple of weeks to start working. At least the sleeping tablets will give you some respite.  Waiting for your scan results today must be agonising. I do hope your Oncologist can advise today what the potential treatment plan is, at the moment everything must seem so out of control to you. Knowing what treatment you will have and when may help a little. I seem to remember someone posting in our group in the last couple of months who had mets to their lung, I do hope they see this post and can reply. Please update us after your results today. Bev. X

I’m so sorry that it wasn’t better news about your lung biopsy Cadeshelp, it’s such a difficult, stressful  time waiting for scan/test results, treatment plans etc., the wait is just agonising isn’t it, all the time your mind is permanently at worst case scenario! It’s good to hear that your sleeping tablets are working & hopefully you’ll begin to feel some effect from the antidepressants really soon. I know you’re facing this major surgery but once you have a plan going forward concerning your treatment as a whole, taking into consideration your most recent news & treatment/surgery gets underway you may begin to feel a little more in control. As Bev has said it’s that complete loss of control & the not knowing that is so, so difficult to deal with isn’t it? I hope someone that has had a similar experience to yourself sees this post & responds. 

We’re always here to try & help support you wherever we can. 

Nicola 

Aw, dang, that's tough and I'm not surprised that you're struggling. 

The good news is that they're actively looking for it and ferreting it out. That's how they smash it all!

I've taken comfort during the uncertain days from my best friend, who has a stoma (not cancer-related, but permanent.) She said it's made her life so much easier, for a lot of reasons but the main one I think sounds great is no more fingers up the butt! Or pooping pain. Other than a few days getting used to handling the bag, and learning about the few foods that don't play well with a stoma, she's happier with hers! I keep that in mind when my cancer docs mutter about it in dire terms. There are huge upsides as well. 

Hoping that your scan comes back with no more bad news. Stick with us here and keep us posted. 

Thanks for your reply ridetbred, your positive words have given me a bit of a lift.

The last two days have been particularly bad for me. I'm very tired all the time and can barely keep awake. I've been taking one Mirtazapine and a sleeping tablet to help with my anxiety for the last ten days. Must ask the doctor next week if this a normal reaction. I'm normally a active person but at the moment I don't feel like doing anything.

Thanks again ridetbred,  I'll definitely report back when I know more.

The exhaustion was brutal! I'm 2 months out of treatment and still have days when I can't do much of anything. I'm fortunate in being able to follow whatever my bod says it needs to do. I don't know your situation, but I sure hope you can too. If you need to sleep most of the day and can, do it! Your body's getting hammered right now. Don't expect it to do what it normally can.

You'll get it back.