Partial response

Hello Jlan,

Not really able to help, but I know there are several people on this forum who have had APR surgery, so I hope someone sees your post and is able to give you the information and support you need. 

I understand this must be a troubling wait for you, and not to raise false hopes but I do know sometimes people don't get a clear picture until the six month scan - the radiotherapy carries on working even after the treatment has stopped.

All the best xxxx

Hello Jlan 

This is such a worrying time for you, and Mrs Vanilla is absolutely right, there are people on the forum who had to wait until the six-month scan to get the all-clear as the radiotherapy keeps working for months after treatment ends.

That said, if it does come to surgery, there are quite a few forum members who have gone on to have an APR - we don't hear from them often because they are getting on with their lives.  It is all too easy for me to say don't look on the internet (we are ALL guilty) but just remember that often information and research is way out-of-date, biased and sometimes just plain wrong.

I am hoping that those members with experience can reassure you.

Big hug

Irene xx

Hi there Jlan ,

As the other ladies have mentioned the 6 month scans are deemed to be the important ones, having said that I can completely sympathise with the way you’re feeling. Did your oncologist have a discussion with you regarding next steps when you got your 3 month results?

We’ve had a few members that have gone on to have APR surgery in my time here & although it’s a big surgery as Irene has said many are just back getting on with their lives again.

Hopefully someone that has been through the surgery will see your post & offer some reassurance.

Nicola 

Hello Jlan,

What a difficult time for you waiting for your 6 month scan. Many people think that this is the important one as there is often inflammation present in the 3 month scan. I completely understand that you feel that you can’t deal with the outcome but can only say one step at a time.  It’s so hard when everyone encourages positivity and it does make it more difficult to speak openly about your fears.                                                  There are several forum members who have gone on to have apr and have shared their experiences. 

Obviously I hope that you will not need this and very much hope for the best possible outcome for your scan. Meanwhile please know that we are all here for you.

Sending hugs xx

Hello Jlan

Sorry for the late reply.

I haven't had the surgery but was getting prepared for it 6 months ago. From the beginning my large, locally invasive tumour was not expected to fully clear.

So fast forward it did, but it took nearly 6 months to get the all clear. Inflammation, edema, colitis and scar tissue made it difficult for the 3 month scan to fully confirm this. Colonoscopy and PET confirmed it had. This may be the same for you and it does sometimes take a little time to heal.

So like you I was researching and getting ready for APR/ELAP surgery. The pictures and descriptions on the internet are very scary, but all surgery is slightly different, due to where the tumour is placed and your anatomy.

So this is the part I wanted to share with you, I made friends with a lovely lady in her 70s, we were both receiving chemoradiation on anal/rectal tumours. We met again in hospital, she had just undergone APR surgery robotically, we share the same surgeon and we are abroad, so they put us in the same room.

When I arrived she was out of ICU and starting to walk, she's a larger lady and she also has other medical problems. There was a 50/50 chance she would develop an infection, but she didn't. She was in a lot of discomfort and by day 4 immense pain, they managed it and with regular pain relief they kept the edge off it.

She was discharged 10 days later and travelled 2 hours home. She been in pain sitting, but it has eased. The cushions have helped a little, but she has also changed her mattress and sofa to help. Still no infections and we don't have district nurses here, so all self managed with family. She has also managed her own stoma, with I hope hints and tips from me.

Fast forward 3 months and her pain has eased, but she still has it, no infections, but her follow up scans show inflammation which they are going to treat. Although clear margins from the surgery they would like to do mop up chemo to get rid of the tiny cells.

She's cried, cursed and screamed at the surgery, but she is now NED and improving daily. It's big scary surgery, it takes time to recover from, but it is possible to be clear of cancer at the end. 

It's totally normal for you to be frightened and need time to get your head round things. Have you contacted Macmillan or Maggie's for support? I have only heard fantastic things about them. Our group is also here to support, share your concerts and fears we all have them, we can all relate. We all have different coping mechanisms and we all need different timescales to get our head round things.....share anything with this group, it not a competition and you won't be judged.

Wishing you all the very best.

Ally xx