Already thinking about the cancer returning

Hi,

Ive just read your post. I think it’s only natural what your feeling. You’ve been through a lot and you are still in treatment. I know it’s really difficult but try and put it in a box and look upon your treatment as your friend. I’ve always found that as time go on it will get easier. Sending a virtual hug xx

Hi VJS1985. Please don’t apologise for posting - that’s what the boards here for and your feelings are totally natural. Everyone worries about a reoccurrence and there’s no magic wand to stop that so try to bear in mind that:-

Worrying will not change the future - it will just make the present more stressful so focus on this next stage of your treatment where you’ll be closely monitored by your medical team

If, and it is an if, something was to appear in your liver then it would be a metastasis from your bowel cancer and not liver cancer - there’s is a difference. A reoccurrence in the liver is still very treatable and would be picked up quickly.

Time is great healer and each scan will move the worry a little bit further into the back of your mind.

Give the support team on here a ring. They will have a chat with you and can tell you about any counselling services that are available - I think you can have 6 free sessions with bupa

Chat this through with your oncologist too and she will tell you if there is anything in particular that you should be aware of?

Hope the chemo is going well

Take care

Karen x

This is natural and don’t beat your self up about it.

I went through this twice and had these thoughts my wife and I sat down and talked about it and decided that we would fill our life’s with going to places in this country that we always wanted to see ( nothing expensive)

Just book up for a night or two and go.

Good luck think positive as that is the only way to go

Hello!

I can relate to your story. My husband is like this just now but unfortunately his cancer did come back (please don't get scared by this everyone is different). His cancer came back after 4 months after being told they had got it all back in January this year (2022). He never got any further sessions of chemo after his operation which I asked about. Was told it wasn't necessary because as far as they were concerned, everything was clear, and they tend not to do anything like that unless necessary.  Then in May this year at a follow up appointment with his surgeon she had some blood tests done and we received a letter that his CEA markers had risen, and they were sending him for a CT scan which confirmed the cancer had come back. Long story short he is now on CAPOX treatment for how long we don't know possibly 6 to 8 months. He is doing ok and currently on his 3rd cycle just gets a bit down at having to now go through this ritual every 3 weeks of getting bloods done seeing the oncologist then starting his cycle but at the end of the day if its going to get results it will all be worth it. He has been told he is tolerating the treatment well in so much that they have upped his dosages of Oxaliplatin infusion and the Capecitabine tablets. I still wonder though and feel a little bit angry that if they started him on CAPOX after his operation just as a precaution, he wouldn't be going through it now and the stray cells which can apparently get through as possibly done with my husband, may have been killed off before they got the chance to form. Take Care.

Vicky.

Hi Vicky,

I get where you are coming from. I had stage 3 bowel cancer 10 years ago had a right hemi colectomy followed by adjuvant chemo of Oxiplatin Capecitabine to mop up any stray cancer cells. 

Thought all was well but a few weeks ago was diagnosed with recurrent bowel cancer which is now stage 4.

if that wasn’t bad enough I’ve found out that there was abnormalities in my abdomen way back in 2020 on a scan which was reported on but no one thought to mention this to me. 

The moral of my story is I understand your what ifs as I’m feeling exactly the same. What if someone had mentioned it to me 2 years ago would it have spread!!!!!

I’ve told my MDT I’m disgusted this has happened. I received a letter from them just full of BS so I’ve made a decision not to let it consume because I am where I am now and can’t change it, it’s s**t but that’s how it is. Im my own advocate as it’s my life and feel they have written off however, I won’t let them, 

I’ve had two meetings with them and made a few phone calls, regarding issues I’m not happy with this far. 

I’ve told them that my MDT must be on the same bus as me moving in the same direction. 

Fudging nora Cath so sorry to hear that, I am freaking out a little, I’m so unlucky I just know it will happen to me… think I’ll mention my concerns to my oncologist Wednesday, even if I just tell her how I feel might make me feel a little better x 

Thanks Cath!

Yes, I'm just so amazed at how well Jay is doing. Physically he is fine if just that bit slower with his mobility at the moment but then he is 68 years old. Psychologically though it is getting to him. He told me the other week this cancer consumes his every thought just now which I do get. I think its just the ritual of having to do this 3-week thing all the time just now and taking these tablets all the time. They will be arranging a scan for him at the end of this cycle and this is going to send the s***s right up him I know because that is how they found out the cancer was back and its just that thought that they'll find something else. Just need to mention that word scan n ur insides just collapse. 

Vicky 

Hi Vicky,

I get where you are coming from. I had stage 3 bowel cancer 10 years ago had a right hemi colectomy followed by adjuvant chemo of Oxiplatin Capecitabine to mop up any stray cancer cells. 

Thought all was well but a few weeks ago was diagnosed with recurrent bowel cancer which is now stage 4.

if that wasn’t bad enough I’ve found out that there was abnormalities in my abdomen way back in 2020 on a scan which was reported on but no one thought to mention this to me. 

The moral of my story is I understand your what ifs as I’m feeling exactly the same. What if someone had mentioned it to me 2 years ago would it have spread!!!!!

I’ve told my MDT I’m disgusted this has happened. I received a letter from them just full of BS so I’ve made a decision not to let it consume because I am where I am now and can’t change it, it’s s**t but that’s how it is. Im my own advocate as it’s my life and feel they have written off however, I won’t let them, 

I’ve had two meetings with them and made a few phone calls, regarding issues I’m not happy with this far. 

I’ve told them that my MDT must be on the same bus as me moving in the same direction. 

Hi,

I  would definitely tell them how you are feeling you are your own advocate. 

The oncologist told me on my first meeting because I had no symptoms he wasn’t offering me chemotherapy. 

I basically told him that was not accurate as I’m on pain killers from my GP for my hip so he relented and I’m staring radiotherapy on  Monday for 5 days. 

My next appointment with him is 25 th November. 

Hi Faloola.

Not sure if this will help, but wanted to share in case it does.

I realised I wasn't given true picture from my initial MDTs, when "debriefed" by 1st consultant (surgeon).

I slowly uncovered my fuller picture from letters sent to my GP alone and then when i first met my next consultant (oncologist) who mentioned so much more.

To avoid this happening again, i've asked to be sent copies of all pathology/histology (and probably scan) reports.

A few months down the road, I have found it has helped me already.

I wonder if something similar could help you feel more empowered with facts and what to challenge?

Thinking of you.