Low Rectal Cancer Diagnosis - newbie on here

Hi KevH

I am really pleased for you that your team were supportive about the referral to Professor Myint. Your tumour seems to be staged the same as mine.

At various times I was told my tumour was 5cm, 8cm and the size of a golf ball!!?? Ho Hum! It was actually about 3cm I believe.

What I do want to say is that there are no guarantees with any cancer treatment, so whatever you do it has to be something you can live with. You will still go through the regular check ups and scans.

Good luck with your appointment with Professor Myint. He did my first Papillon treatment the day of my first consultation!

All the best

Catherine

Hope it works out for you Kev,

court 

Hi

I had similar lack of accurate diagnosis.  Was told it was heamaroids and given suppositories.  GP was rubbish from the start.  All along whenever I rang up after the op he would just moan about surgeon, district nurses , etc.   It was a different one who got me referred. Thank goodness but had 2 years of rectal bleeding from age 53.  Am 59 now.  Hospital was okay but one has to learn to navigate the nhs.   Staff do their best but things do get missed such as blood tests  , forgetting to wipe 'nil by mouth' off the board, and make sure u have all the pain killer u need.   I wish u all the best.   

Sue

X

Went for the results yesterday, biopsies confirmed it wasnt low rectal cancer but actually anal cancer, hey said it was locally advanced, some lymph nodes were affected and there were some lesions spotted on my liver so being sent for another MRI.

They didn’t stage the cancer, saying as it was rarer Cancer they’d prefer to wait until I see the anal oncologist and also have the MRI results then.

Feeling upset and worried 

Hi ,

Totally understandable that your upset after that news . It’s inportant to remember that all scans are mearly images and can be inaccurate depending on the angles taken . My mum’s surgeons , who are very experienced and lead clinicians in their fields always caution us that they will not know for certain until they either biopsy or do surgery . The liver nodules may well be nothing concerning , many people have experienced that but if they do turn out to be something then there are many treatment options open you . Back in 2009 my mum started treatment for a liver spread and she continues to keep well . 

HellB mention earlier about getting checked for Lynch syndrome and I feel it’s really good advise . There are some very effective treatments that are working really well for patients with Lynch syndrome so it would be good to chat to HellB about this to let you chat your oncologist . 

It is a very uncertain time for you but we understand how unpredictable cancer can be and the anxiety it brings but we also know the hope that treatment can bring . Our helpline staff are available to chat through anything with you . 0808 808 0000. 

We are certainly here to help you through and once you have a chat with your oncologist and know your treatment plan things start to feel a little more directed and manageable .

Take special care,

Court 

Hi Lisa,

I’m 42 and was diagnosed with rectal cancer in August last year, I had surgery to remove an 8cm tumour. The operation went well and I was discharged after 5 days

The histology showed I had 9/33 lymph nodes affected by the cancer and also extra mural venous invasion. My tumour was T3 N2 disease. 

I’ve beem commenced on chemotherapy for 6 months. Now up to cycle 6. Things going ok and only 2 more cycles left. 

Cathryn 

Thank you Court,

I am feeling calmer and more positive today! 

I am so glad I have joined this forum as the support is second to none.

Thanks again, much appreciated 

Lisa xx

Thank you for you messsage Cathryn, it is good to hear of other people of the same age.

You sound very positive and I am pleased that your treatment has gone well so far! Good luck and keep me posted!

Thanks again

Lisa xx

Hi all,

Update I got a phone call this morning from Clatterbridge for me to attend an appointment with Professor Myint next Thursday.

This is for an assessment of whether I am a suitable candidate for Papillon treatment. Fingers crossed that I am.

KevH

Good luck with the appointment, will be interested to hear how you get on as I was pretty much same as you. I had my surgery last week.