Life beyond bowel cancer

burchy

Uncertainty about the Future

Hello all,
I was diagnosed with colon cancer in March 2018, had a left hemicectomy and following histology my results were T3 N0 M0 and a stage 2. The oncologist said I didn’t need further chemo so that’s me done for now.

I was feeling fairly positive until I read several stories of people who where diagnosed with exactly the same stage as me-only to find that their cancer returned with a vengeance at a later stage. My mood has now plummeted.

I know that no one has got a crystal ball and everyone’s cancer is individual, but I would really appreciate any words of positivity or hope for the future.

Thank you so much ☺️

Lizalou

Hi @burchy

I know what you mean! I had stage 3 and was offered 5fu chemo but not the oxy that everyone else seems to be given. So I spent ages worrying that not enough was done.

Several things helped....I wrote a list of all my woes and started to tackle them....

I spoke to my GP and she reassured me that I could see here at any time if I had any physical worries.

I spoke to a counsellor arranged by my specialist nurse. Only a few sessions but helped enormously.

I spoke to my specialist nurse. As I understand it, the specialists will know what type of tumour they are dealing with, and how likely it is to spread. So your stage 2 could be very different from someone else's, hence the treatment advice.

Keep busy. Now is the time to do all those new things, take up new hobbies, make new friends, pay back old friends.

Time! You have suddenly gone from lots of medical input to virtually none. It will get better . Honestly. :x::x:

Elmac

Such good advice @Lizalou

burchy

That’s amazing advice which I will follow. Thank you so much :x::x::x::x:

Catlover

Hi @burchy you are in a similar situation to my husband. See my profile for a full picture! Not a day goes by that I don’t worry but I am sure you will feel a lot better if you follow @Lizalou’s sound advice. There are also a lot of positive stories on here. I think the old cliches, take each day as it comes and make the best of each one, is actually important. Also someone on here also advised to put aside a set time of day to do the worrying and then to forget about it for the rest. She said this worked for her and she eventually began to put the worries behind her.
You have come to the right place for support and advice. Don’t be afraid to ask anything at all, nothing is too trivial or silly. Caroline. :x::x::x:

Jenken

Hi @burchy, My husband had exactly the same diagnosis as you and I also worried about him not having chemo.It is now 18 months since his operation and results from his last scan were all clear.It has got easier as time goes on but I always worry at scan time . Jenny :x::x::x:

cgun

Am terrified I have made the wrong decision! Had a bowel resection in November and a secondary removed from my lung in January. When we went to see the oncologist she told us that I am at high risk of the cancer coming back and had to decide whether to have the chemo now or wait and see if it comes back and have it then. After an interminable week trying to make the decision, we decided to wait so that if it comes back I have another line of attack so to speak. That was in March. However I am suddenly full of doubt that it was the correct decision. Has anyone else gone down this road and how did you deal with the doubts?

DianeS

Hi @burchy and @cgun, the little person on your shoulder feeding negative thoughts does eventually go away, but as @Lizalou has said it does take time. I have tried various ways of dealing with this and have found mindfulness and meditation have helped me the most. I’ve also written down positive affirmations, that I say when the negatives come pouring in. I think it’s all about finding a way to help that suits you. I have been on a wait and see regime for almost two years. It was really hard in the beginning as I’ve always felt I should have had more chemo, but my oncologist was adamant not to have chemo unless it comes back. I really hope you can both put your doubts aside, and enjoy each day as it comes. Love to you both Diane :x::x:

cgun

Thank you Diane, all positive thoughts are much appreciated. I don’t know why this week has me suddenly doubting my decision, up until now I have been very sure it was the correct thing to do. Am trying to practise mindfulness in the hope of getting back some peace of mind. Thank you. :x::x:

belinda66

@burchy

It's a difficult one. I have an identical diagnosis to yours. At first I felt quite positive and that was boosted by what some of the professionals said. However, cancer's a devious, sly barsteward and nothing can be taken for granted. Like you, I've read accounts from fellow Stage 2ers who have had a spread and rocketed to Stage 4 very quickly: even a few Stage 1ers have suffered metastasis, though that's rare. I had Capecitabine chemotherapy and don't regret it despite the low odds of it being beneficial.

We are luckier than those diagnosed at Stages 3 and 4 but can't assume anything or be complacent and I sometimes think we're in a bit of a no man's land where there are a lot of grey areas. Personally I was very shocked by someone I know in real life, also Stage 2, who was confident to the point of cockiness about survival but then had an aggressive recurrence with life changing surgery.

A lot about how you feel about your future will hinge on the quality of the follow up surveillance you are given. Do you get regular scans, colonoscopy and blood tests? Easy access to staff with any questions? You will find previous debates about this on here. It's one of the most difficult issues for early stage colorectal cancer patients. NHS Trusts vary hugely on what they offer.

burchy

Thank you for your response. I really just needed some positivity as no one can predict the future. I will be closely monitored though.