Rectal cancer recurrence

Hi Carrie23

Welcome to the forum and it’s a question that surfaced a lot in our family too .

My mum has never had post op chemo following recurrence but some oncologist do a few cycles for belts and braces . You are entitled to a second opinion to see how another clinician would handle your situation .

The reason my mum was given which was a long time ago , was chemo worked better on visible disease than mirco disease due to the rate of cell division . Now that may have changed as it was a long time ago .

They also said the longer they can hold off on her chemo options the better for long term management should it be required . After her second liver resection she has not recurred and again after her lung resection . However my mum was later sixties early seventies . Not sure given you are much younger if you feel that changed things .

All the very best .

take care ,

Court 

Hi Court, many thanks for taking the time to reply. It's very helpful and much appreciated. 

Your comment about holding off on chemo makes sense and is what I wondered too. And since I had a recurrence despite adjuvant chemo last time the information regarding visible disease is relevant too. 

This recovery has been harder and slower which may influence the decision too. It may actually be too late to start any adjuvant chemo by now in any case, it's more that I need to settle this in my head and believe we have thrown everything at it if you see what I mean!

I hope that your mum is doing well now.

Very best wishes. 

It worried me too ! But I think my mums unit only treated visible disease however the city next to ours did three mop up cycles ! 

Mum is doing great thanks . She was diagnosed in 20009 stage 4 and been disease free since 2016 and a lot of stuff in the middle !

My mum was classed as stage 4 , are you classed as stage 3 still ?

https://www.nice.org.uk/guidance/ng151/evidence/e1-followup-to-detect-recurrence-after-treatment-for-nonmetastatic-colorectal-cancer-pdf-253058083676

Just linking in the current Nice guidelines in case you have not come across them yet . If you head to local recurrent rectal cancer you should be able to read the current recommendations in England for the management of your situation and make sure it is the same . Might help you know for certain you are on the correct clinical pathway .

It might be different for stage 4 patients than a local recurrence but this should help point you in the right direction .

Take care ,

Court 

Thanks for the link. I will have 6 monthly scans and CEA monitoring (although my CEA has always been normal up to now) so no issues with follow up level. I'm in Scotland although not sure that makes any difference.

We haven't discussed staging with the recurrence - the first tumour was at stage 3, this time it was locally advanced within the pelvis. Both surgeries were with curative intent. No invasion of other organs - the hysterectomy was precautionary due to the confined space in the pelvis but histology of all that was clear. No one will say how likely it is that there are cells left behind - clearly there were last time although this surgery was much more extensive (12 hours, APR, permanent colostomy etc). I also have a RAS mutation, which apparently means I wouldn't benefit from targeted therapies, however that's a worry for later, not for today. 

The aim now is I guess to put cancer back in its box on a high shelf and hope I can leave it up there, only taking it down periodically around scan time for a quick glance and nothing more. 

Lovely to know your mum is doing so well - stories like hers provide much-needed hope for many. 

We are in Scotland too . If you click on my user name you can read a bit about where her care was provide .

Cant fault them . They have managed her care with such wisdom and brilliant clinical judgements . We are very fortunate to have such great teams in Scotland from the Centre of excellence for the liver through in Edinburgh to the fantastic thoracic unit in  the Golden jubilee . 
You can rest assured they are wonderful if ever required but you are so correct it’s time to move forward and back to living a good life .

Take care ,

Court 

Hi again,

I've picked this thread up again as unfortunately it looks like I'm facing another recurrence. 

I had 2 clear scans after exenterative surgery 16 months ago. My CEA has always remained below 2, even before the original resection 3 years ago, so it was not considered a marker for my cancer, however in May it rose to 4. Retested a couple of weeks ago and it's now 9. 

The consultant has brought forward my next CT scan (although having to wait about 3 weeks for an urgent scan) and thinks the most likely scenario is regrowth in the pelvis. My previous consultant felt another pelvic recurrence was less likely (had clear margins, chemoradiation etc) and that the big risk was distant spread.

Does anyone have knowledge/experience of similar? Can CEA rise with recurrence despite being normal pre initial surgery? I received such helpful replies previously from Court. This time of waiting is the worst, I know. It's so hard to think of anything else and my mind is exploring all the scenarios, not all of which will happen of course so it is a clear waste of energy!

Hi court 
Sorry to hear you are back with concerns .

My mum’s CEA with a significant spread to her liver was only 7. Something . Which given the spread was low . She naturally without evidence of cancer sits at  3/4 . A spread to her lung only raises it by one ot two points at the most . Although it does not shift loads it does shift a little . I read somewhere that in those circumstances it’s better to use percentage of increase .

Her CEA with a spread to her liver is more responsive than a spread to her lung .

However inflammation has also caused it to go up two years running to 6 and was absolutely nothing !

Not easy to interpret for some people .

My mum had a recurrence last Sep and currently using a targeted therapy for the last six months and it’s been a good balance between treatment and quality of life . It’s also holding it nicely .

This part I always found much harder than actually knowing what the plan is .

Take care ,

Court 

That's good to hear that your mum is doing ok despite another recurrence. She sounds so resilient. 

You're right that it's complicated! I wondered about inflammation - do you mean from other medical conditions?

• Anyhow like you say I need to get through the waiting period. I'm assuming no more surgery will be possible at this point. I've been told I also won't get benefit from targeted therapies due to RAS mutation. 

No , I think it was more just a bit of inflammation in her body that triggered some response. She was thoroughly scanned each time and nothing concerning showed up . It even dropped back down each time after a few months of staying up .

Something just triggered it .

Take care and let us know how you get on .

Take care ,

Court 

Thank you, I definitely will.