Bowel (colon and rectum) cancer

A support group for anyone affected by colon, rectal or small bowel cancer to come together, share experiences and ask questions.

Life changing date 13th June

AJ787
Posted by

Well in Wednesday I go with my partner to find out the details from the colonoscopy bloods biopsies etc. I really don’t know how we are going to get there it’s terrifying, so scared he is going to say sorry there’s nothing we can do. Are there any key questions I should ask? 

I have taken so much comfort from these forums with the positive stories from people whose disease is quite advanced. I do wonder where the people are now from older posts but I guess they want to forget things and try to get back to some normality, either way I wish them well. I’ll catch up with you all later in the week.

Kareno62
Posted by

Hi AJ787 and hugs.

Yes it's a horrible scary time but the worst part is the not knowing and your imagination runs wild. After Wednesday you will know the results of the various tests and what the treatment plan will be.

If you can take a pen and paper with you with some questions on and also try and jot down key points - there's a lot to take in and sometimes terminology that you might not have come across.

Hopefully there will be a colorectal nurse in the meeting too and she may be able to chat with you after and give you some information booklets. If not ask if you can have a contact number for your support nurse then you can ring her if there's anything you're not sure about.

Things to ask might be

What is the treatment plan?

If there is to be surgery will it be keyhole or open?

Are you treating with a view to cure?

Has the cancer spread outside of the ceacum?

I'm glad the board has helped you. As you say some people drift away over the years when they maybe don't feel the need for support any longer but there are still people posting who are several years clear.


I'll be thinking about you on Wednesday and let us all know how you get on


Karen x

Loudavegaz
Posted by

Hi,

I’m not sure I can say anything to help but I will be saying a prayer for you both tonight.

Sending you a big hug.

Good luck Tomorrow,

Love from Lou xxx

AJ787
Posted by

Hey Lou, 

Thank you so much, I understand there isn’t anything to say but your words of support are comforting. I will update tomorrow x

colorectalsurvivor
Posted by

AJ,

I joined this forum about 5 months ago. I considered myself a survivor. I will log in this forum once in a while. 

All the best to you. 

I’m going for my first routine PET scan tomorrow.

Luv..

Fourlegsgood
Posted by

AJ787

If you have only had the colonoscopy so far then they are unlikely to be able to tell you much beyond a positive test for cancer. In that case the next stage would be a scan to see if it has spread. My scan was 2 weeks after the colonoscopy result and the scan result was 2 weeks after the scan. How the tumour looks in the colonoscopy is usually not an indication of whether it has spread or not or anything like that. What might look large can still be contained or a smaller one might have tried to burrow its way out.

My consultant who did the colonoscopy said he knew what cancer looked like and he was pretty sure that is what it was so I expected the test results.

Listen to all that is said to you both and take a notebook to write ALL of it down. You will forget otherwise. It all happens in a blur. Ask him or her to slow down if they are going too quickly for you to write. They will not mind. Ask them to explain anything that you do not FULLY understand. Again they will not mind.

Hope for the best, prepare for the worst as they say. But what ever you do, do not go on the internet to research life expectancy or anything like that. Listen instead to the consultant and trust them. They know the patient and the internet does not.

Nick

....................................

Age 57 when diagnosed. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs.

Open surgery for anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. No temporary bag. Underwent 6 months precautionary capecitabine (Xeloda). Returned to horse riding 6 weeks post op, jumping after 8 weeks and first competition 10 weeks after operation. 1 year and 3 year post op CT scans clear. Colonoscopy 3 years post op also clear. 2017 - 6 year CT scan clear.

AJ787
Posted by

Well we went  to see the surgeon just. He confirmed the tumour was cancerous adencarcinoma in caecum been there some time possibly years. ct scan showed some small spots on lungs but unlikely related, lymph nodes enlarged and no signs of the liver being affected. Keyhole surgery planned in about 2 weeks then we’ll know more. Partner is doing ok and not afraid of op, I got a bit upset but remain positive, trying to stay strong x

dom1969
Posted by

Hi AJ787

Thats good news if that makes sense, spots on lungs show in over 50% of ALL ct scans, nothing on liver, might be some in lymph nodes, bet a penny to a pound its over and done with by Christmas

dom

Stwhitm
Posted by

Hi AJ787 - Dom is right about spotson the lung, I had to go for a follow up CT scan to look closely at them last month, my original CT/MRI scan was late December.  My surgeon has a convenient acronym for it VOMIT - custom of medical imaging technology.  My wife is a GP and tells me it's VERY common.

I had a lower anterior resection on 24th January - out of hospital on 27/01 and back at Anfield on 24/02.  It was nowhere near as bad as I thought it would be.  Nothing is as bad as the time between diagnosis & being told plan of action.  You've done that - it gets better from here on in.  Good luck - consult your care team & people on here - AVOID GOOGLE


YNWA


Mike

JoannaZ81
Posted by

Great news! Keep it up! Yoiyr example should give hope to all of us! 

AJ787
Posted by

Thank you soooo much for your responses, really helpful. Its great to hear your positive stories and I will regularly checking in to see how everything is going. Have to say the surgeon was very good, told it as it was but without being cold, really didn’t want a simpering approach. The nurse was really great too, I probably need her more than he does but that’s ok too. Me and my other have had lots of discussions tonight and he is fighting ready, great! He said i seem afraid and honesty I am because I’m not in the driving seat, I’m ringside and believe me it’s a scary place to be but that doesn’t mean I’m not 150% behind him. All the best to you guys you really are the best xx

Stwhitm
Posted by

When he has surgery he will be on a drip & eating next to nothing for 1/2 days - drinks are key.  My son's G/F had a family member who had had the same op & she 'smashed' visiting - bringing iced drinks one day, the hospital was at sauna level, and a Costa coffee on another.  

I'm no ''pain warrior" and I found it all ok, except a week after surgery when the family were at Anfield and I was alone & tried to celebrate Mo Salah's second against Spurs with an ecstatic leap from the sofa - don't try it.

When it comes to something like this you realise how wonderful the NHS can be.

Thinking of you.

YNWA

Mike

colorectalsurvivor
Posted by

AJ, glad that you and your partner doing good. 

Keep it up. Be positive. 

Luv.

Stwhitm
Posted by

When he has surgery he will be on a drip & eating next to nothing for 1/2 days - drinks are key.  My son's G/F had a family member who had had the same op & she 'smashed' visiting - bringing iced drinks one day, the hospital was at sauna level, and a Costa coffee on another.  

I'm no ''pain warrior" and I found it all ok, except a week after surgery when the family were at Anfield and I was alone & tried to celebrate Mo Salah's second against Spurs with an ecstatic leap from the sofa - don't try it.

When it comes to something like this you realise how wonderful the NHS can be.

Thinking of you.

YNWA

Mike

AJ787
Posted by

Hi Mike, good advice thanks. My other half lacks patience and will try to run before he can walk so my biggest challenge will be keeping him still but I’ll manage somehow. He’s never had an operation in his life and never been ill so this is all new to him.