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Beating Bowel Cancer Community

Bowel cancer treatment and side effects

at2017

Need to talk to people that get it!

Hi

So quick bit of background info

I'm 35, was diagnosed with stage 3 back in December, in Jan an 11cm tumour was removed. Feb I started 8 rounds of capox.

I've completed 4 rounds. Today I had a check up with the consultant l. New trials and studies have been done that show that 4 rounds are just as effective as 8. So that's it, chemos finished, I'm finished. I should be relived, happy, over the moon. But I'm not. It feels like a massive anti climax, I can't really explain it, I'm scared that they've made the wrong decision, I'm scared my anxiety is going to go through the roof. Because the tumour was removed there's no way of seeing if it's worked. It's a case of if it comes back they'll find it on a six month scan.
The texts have started to come through of 'amazing news' blah blah blah. I don't want to read them, I don't want to be receiving them, I don't feel like it's amazing news.
My heads just all over the place.
Just wanted to write it down in a place where people understand these odd emotions.
Thanks for listening!!

belinda66

Hello @at2017.

Sorry to hear you're suffering anxiety. I sometimes think it's other people who want reassurance and have a need to hear that you are fine now - 'amazing news' as they've put it to you. Someone said to me today: 'How are you now?' and I know that he wants to hear 'everything's alright now, I'm cured'. But I didn't and said, it's impossible to say, no one knows what will happen.

You are allowed to be scared and anxious and that's normal after all you've been through. You don't have to be happy, relieved or anything. You should be able to feel what you do and be supported in that. On here I am sure you will find kind, supportive people who understand you. You can always let off steam here. Best wishes.

Polly 1

Hi @at2017 I quite understand your worry and am surprised your Oncologist didnt talk about this when you started treatment rather than 'springing' it on you out of the blue.
I think he is talking about the Scot trial where they decided that 4 of the 3 weekly cycles (with cap tablets) are as good as the full 8.
My husband was on the IV form of 5FU (2 weekly) when he had his first treatment in 2013. The Scot trial was ongoing then and he was offered the opportunity to join the trial so would have had 6 rounds rather than the full 12. After considering everything he declined to join so had 12.
After the trial results were reported it was decided that 4/6 cycles were enough. Many on the forum have had reduced treatments following this.
In hubby's case even with the full 6 months treatments and having no initial spread to organs (just to 2 close lymph nodes) a couple of years later found he had liver and lung mets. So in his case having the full 12 didnt stop spread either.
Your team will be doing their best for you and are following best practice. They will be keeping a close eye on you with blood tests and scans.
Well done for getting to the end of the treatments. I'm sure it was just the unexpected decision at your Oncology meeting that just made you feel a bit 'wobbly'.
All the best :x::x:

terri m

Hi @at2017 ... I had my surgery in December for stage 3 bowel cancer. T3 N2 MO.. Like you after my 4th infusion my oncologist decided to stop.. I am still taking capecitibine though . I start my 6th cycle next week.. I totally understand your reasons to be concerned.. I was too, and due to being high risk for reoccurence I was very worried.. My oncologist said there was about 1% dfs in completing another 4 cycles... I went home very despondent and even now, theres not a day that goes by that I dont worry about this dreaded disease returning.. However we have to be guided by our professionals... Friends and family mean well with their messages of support but dont understand the trauma we are truly going through... I woke up last night upset, couldn't sleep , thinking about the unknown.. This forum helps us realise we are not alone. I hope your anxiety soon becomes easier. Distraction is a good thing.. Plan soneting nice to look forward too.. Thinking of you xxx💗.

ch7091

I havent finished my chemo (a whole 6 months for me) but I can already understand where you are coming from. How are we supposed to pick yourself up after this and just resume normal life?! I started seeing a specialist counsellor a while ago and I would highly recommend it. She has been invaluable, and I really feel like she has changed my life. I was keen to start the counsellling because I was already worrying about the 'after' part, and Im so glad I did.

It may be worth asking if your hospital has a cancer counsellor..it was amazing to sit with someone who understood what I was feeling and could tell me why I was feeling like that. It has been by far the most worthwhile thing I have ever done.

Jodie :x::x::x:

jeangenie

I understand exactly how you feel. My chemo was stopped early, though nt as early as yours, because my side effects were getting worse. I was pleased not to have the last cycle but scared that I hadn't had the whole treatment.
I have come to realise, from reading and talking to people, that oncology is still an ongoing science and new discoveries are happening all the time.
I am 6 months on from the chemo, scans and checks and about to have my first follow up appointment. I still have very mixed emotions, as I am sure do most people here. It can be very difficult when those around you want you to be 'better' and happy. It isn't that straight forward is it? I even have times when I miss the chemo - not the pain and the side effects but the routine and the 'all in it together' atmosphere in the chemo ward each time. Luckily I have a couple of good friends I made during those times.
Best wishes to you :x::x:

GD62

Hello @at2017

Sorry to read about your anxiety and it's completely understandable, as you say post operatively Stage 3 chemotherapy may not feel like end of story. And like me with stage 4 and post CRS/HIPEC with a liver resection it is not as people imagined that you are cured to the uninformed.

For me recurrence is an expectation and particularly with liver metastases my prognosis is even less statistically certain. My advice would be to discuss it with your cancer nurse and get that counsellor referral.

Frankly cancer is a head fxxk so get what help you can and just try to live with it. I just hope and pray that none of us get recurrence.

Anyway good luck and positive healing xx :)

Baxter2

Hi @at2017

Youve already had spot on advice above but I just wanted to add a wee bit too!

If there's a Maggie centre (or similar) near you, I'd make enquiries as they run a six week course called 'moving on' I think it's called. This is specifically to address the anxieties and uncertainties for those who have 'completed ' their treatment since it's well recognised that this is a particular challenge for many cancer patients. Also, one to one counselling should hopefully be available to you too.

Sending lots of love and very best wishes,

K💛💜💙💚❤️

dc1

Hi @at2017

I know exactly where your coming from, I finished chemo in Feb and am just now starting to get my head around it all, Macmillan do a course called HOPE which I've been told is very good, I also started anti depressants as they also help with anxiety which have helped.

As far as have they made the right decision goes my answer to that would be yes, I was originally told 8 cycles which was reduced to 4 due to the results of the SCOTT as 4 was as effective as 8 cycles. When making that decision the onc would have looked at all of the pathology and acted in line with very strict guidelines

All the very best

dom

at2017

Thanks guys I knew you'd get it!
I think the chemo was my safety net.
I will def look in to counselling as I have said from the start that I think I will lose it when it's all over. When your having treatment or scans or whatever there's always something to focus on.
:x::x::x:

Wren17

Hi@at2017, i fully understand where you coming from and others haven given you good advice. Hope the counselling route works out well :x::x:

scruffysheep

I had a stage 3 tumour removed just before Christmas and began Oxaliplatin and 5fu in February. I feel exactly the same, though my oncologist didn't want to reduce mine so I'm still having 12 cycles ( got 3 more to go) as he calls mine a particularly nasty little tumour and he feels I would benefit from the full dose.
Obviously I want the chemo to end because of the side effects but am really concerned about ending it as it's become my security blanket. Knowing I go to the unit once a fortnight and can discuss any issues with the brilliant staff has been such a help and I'm not looking forward to that ending.

at2017

Ah time wise we are pretty much on par with each other.
See my onc has told me all the way through that my tumour was aggressive and quick growing and I'm at very high risk of it returning. This is why I'm having a bit of a wobble, him telling me what a nasty bugger it was, then halving my chemo!!
Now I've had a few days to get my head round it I'm a little more calm about it all xx

Quote from @scruffysheep:
I had a stage 3 tumour removed just before Christmas and began Oxaliplatin and 5fu in February. I feel exactly the same, though my oncologist didn't want to reduce mine so I'm still having 12 cycles ( got 3 more to go) as he calls mine a particularly nasty little tumour and he feels I would benefit from the full dose.
Obviously I want the chemo to end because of the side effects but am really concerned about ending it as it's become my security blanket. Knowing I go to the unit once a fortnight and can discuss any issues with the brilliant staff has been such a help and I'm not looking forward to that ending.

george1960

After all the attention you have had doctors, nurses,bloods, scans etc I understand how your feeling anticlimax but you have to stay positive. I understand the people being congratulationly there concern love and compassion and worry didn't go away when you told them of your disease it kept with them. It is good news but again understand it's inside of you or was. I had good news last week my wife opened the letter it said good things but she broke down in an uncontrollable tears of relief that's the love the same as them people on the phone.

When I first found out I didn't want to speak to anyone but they didn't go away cos they was scared of loosing me and wanted to make sure I was ok, needed anything, could help, anything cos they felt so hopeless.

We all deal with this frigging awful disease differently but you will get there.

Good luck and I wish you wonderful things.

George :x:

determinedjoan

Highly recommend Macmillan Hope course :x:

george1960

Yes definitely if there is a Maggie's center near you go to them as I have been told wonderful things about them. And you got nothing to loose going to SEE.

I wish I had a center near me.

GEORGE :x::x: