When bowel cancer returns

Martinp

It's back :(

I've not been here for a while. My stage 3 cancer had gone and life got back to normal. Recently I'd been worried about my CEA which has gone from 1.6, to 1.9, 2.6 and the latest 3.9. Nothing to worry about said my GP, nurse specialist and consultant. Fortunately I was due my 18 month CT which has picked up a 10mm tumour on my lung. Immediately (i.e. next day) had a PET-CT, whole body this time. I was on holiday last week when I got a call from my nurse specialist to say confirmed tumour on lung but also they had found 'hot spots' in my pelvis. I had to ring this much out of her. Am now seeing bowel surgeon on Wednesday and am a complete mess at this point.

I'd love to hear from anyone with a similar experience what I should be expecting at this stage and what treatment options I should be asking about. Thank you.

Polly 1

Hi @Martinp I just wondered how are you getting on?

Martinp

Hello @Polly 1 it's very kind of you to ask. I have three tumours. A small one on my lung and two lymph nodes in my groin. We've decided to tackle them with SABR radiotherapy which is new and exciting. I start treatment on Monday. Hopefully going to zap the buggers into submission.

How are you?

Polly 1

Hi @Martinp I'm glad to hear you are starting a new treatment and I hope all goes well.

My husband is fine thanks - on permanent chemo for the foreseeable but nothing showing on the scans at the moment and otherwise feeling OK.

Let us know how you get on on Monday :x:

CD1966

Good luck with your SABR treatment, @Martinp - can you tell us any more about this? I gather it is quite new. Where are you having it done?

Martinp

Hello @CD1966 Thank you I had my first treatment today. SABR is not that new but it is new when it comes to treating Oligometastic Disease. In fact I am only the 30th person to have the treatment at my hospital since the trial started 2 years ago. I'm part of a CtE (commissioning through evaluation) trial which is being offered through 17 centres by NHS England. My nearest is Leicester. There are various criteria for entry the main one I remember is you have to have 3 or fewer mets. Here's a link where you can read more (you need to scroll down). https://www.england.nhs.uk/commissioning/spec-services/npc-crg/comm-eval/

Martinp
Quote from @Polly 1:

Let us know how you get on on Monday

I had my first treatment today, was in and out of the treatment room in 20 mins or so. They treated the two pelvic lymph nodes. Tomorrow they will treat my lung met. No side effects to speak of. Everyone involved very hopeful of a positive outcome.

Polly 1

Glad it went OK @Martinp all the best for tomorrow as well :x:

Sparrow

Hey @Martinp, I'm sorry to hear about your recurrences, but that is wonderful that you are having the SABR treatment and that your team are optimistic- yay!! All the best with the ongoing treatment! Hugs :x::x::x:

CD1966

Thank you for that @Martinp - very interesting and great news that your team are optimistic for you.
How are you feeling now after the first treatment session?

Quote from @Martinp:
Hello @CD1966 Thank you I had my first treatment today. SABR is not that new but it is new when it comes to treating Oligometastic Disease. In fact I am only the 30th person to have the treatment at my hospital since the trial started 2 years ago. I'm part of a CtE (commissioning through evaluation) trial which is being offered through 17 centres by NHS England. My nearest is Leicester. There are various criteria for entry the main one I remember is you have to have 3 or fewer mets. Here's a link where you can read more (you need to scroll down). www.england.nhs.uk/commissioning/spec-services/npc-crg/comm-eval/

Martinp
Quote from @CD1966:
Thank you for that @Martinp - very interesting and great news that your team are optimistic for you.
How are you feeling now after the first treatment session?

Hello I've now had five of the six treatments and the side effects are negligible. Just a bit of fatigue. But that could be the heat at night!

Gypsy

Hi @Martinp I am so glad that you are doing so well and that the outlook is optimistic. That's great news.:x:

Martinp
Quote from @Gypsy:
Hi @Martinp I am so glad that you are doing so well and that the outlook is optimistic. That's great news.

Thanks @Gypsy we're hopeful this treatment will deal with these tumours. Long term I don't think the outlook has improved really. But at least it's delayed chemo for a while which is great.

Gypsy

Hi again @Martinp . Well, I think, hope and pray that if this treatment zaps the tumours and obliterates them in you then that does mean it is an improved outlook for you after the awfulness of recurrence. I had unexpected recurrence to back in the day and I know fine how that feels but also, how much difference it makes when something meaningful is done about it. I'll stay very hopeful for you.
Thinking of you and wishing you well.:x:

Martinp

Hello @Gypsy this is a very belated update. Unfortunately the SABR radio didn't work. Or at least it didn't stop more tumours popping up. I'm now on cycle 4 pallilative FOLFIRI + Cetuximab which is going OK. My CEA is coming down (2.5 but it was only 3.5 when the metastases were first diagnosed) which is encouraging but we are only talking about control now. CT next month. I hope you are well.

determinedjoan

Hi @Martinp ,
Thank u 4 ur update.
So sorry to hear that treatment didn’t kick cancer into the long grass once & for all; I had same (disappointing) experience of lung & liver Ablations in Oct, which were successful & did zap those mets but, as u say, didn’t prevent others from popping up.
I can’t hv Cetuximab unfortunately (Kras mutant) but like u, am hving chemo (Folfirinox/Folfoxiri) to try to control mets. Grateful to be offered any treatment that will help to keep me here 4 as long as poss 4 my two sons. Wish u all best with ur chemo :x:

Gypsy

Dear @Martinp. I'm so utterly sorry it didn't work and know that saying'sorry' never seems to be the right word for it. I'm glad that the latest chemo is going ok and good that the CEA has come down.I really hope and pray you have good news on the control aspect when you have your next CT scan.
Thank you for the update and hope you will let us know about the CT scan. I will be thinking of you. :x:

terri m

Hi @Martinp .. Sorry to hear the SABR treatment didnt work out completely for you, but I do hope that the chemotherapy & any other future treatments will zap all them nasty cells away once & for all.. Thinking of you.. :x:

DianeS

Hi @Martinp so sorry that the radio treatment hasn’t managed to stop other blighters popping up. Great and positive news that the CEA levels are dropping. Control can go on for many many years, look at our inspiration @Bear G and there are others on the forum too. Best of luck with the scan next month, we are all rooting for you. Love and positivity Diane :x::x::x::x:

Martinp

Hello thank you everyone for kind words and thoughts. I think I have come to terms with the situation. We have a Macmillan psychologist at the hospital and she has been a great help. I am making plans for a great year just need to get over the hurdle that is the dreaded CT. I'm very well in myself and have no pain so I feel lucky. Best wishes to everyone.

AMM31

Hi @Martinp
Sorry to read your update.
Will be thinking about you and praying for you.
Best
:x::x: