Hi there, I was diagnosed almost 5 weeks ago and I still cant take it all in. I have bowel cancer at the sigmoid and a tiny spot on my liver that has metastasised from the bowel. I was seen by the oncologist last week and have to start chemotherapy on December 4th for 3 months. It all very terrifying when they are giving you all the possible side affects that you may get. Once I have had the chemotherapy they will rescan me and then I will need two surgeries. One to remove the bowel tumour and I need to go to Edinburgh for the liver surgery. I am glad to have found this forum with people who are going through the same thing as me. 

Hi it is very scary when they go through things I didn’t have chemo first not sure why it might have been because I had a neuroendocrime bowel tumour. All I can say is that amazing things can be done with our bodies and if they are recommending surgery go with it as they do know the best course of action x hope all goes well with you x 

Thanks Wendy that’s really useful information x

Hello all

I hope you are all doing OK. I have my 2nd scan tomorrow (MRI, I think), and apparently my biopsies and ct scan results are back, but I don't know any details yet. I hope/think this means the MDT will dicuss my case next Friday. 

I think that means they'll have a plan/options/more detailed diagnosis soon?

Much as I feel 'ok' overall, and I certainly hate the waiting, I'm terrified to hear what exactly they've found, whether it's spread, and how hard the treatment will be.

So long as they can treat and cure (which was the initial comments of the surgeon who did the colonoscopy, and what I'm clinging to), I guess I have to accept anything else.

How is everyone else getting on with news and treatment?

Hi wishing you the best news looks like they are doing quickly so that’s a bonus x 

I started driving this week 8 weeks after surgery still in some pain but things are getting better, 

take care 

Wendy 

Hi James 

it’s probably the worst bit when you have everything and are just waiting for final discussion and plan from the consultant.

The MRI is the final bit and then you should get a date.

I have appointment next Friday to go through my chemo plan but it’s been another two weeks waiting.

looking at it overall it seems to be about two months with most and then they are on treatment or operation.

I just want to get started and I think once you do have the plan it will ease a lot of anxiety.

I bit unsure on Chemo and what this has been like for some people, so if anyone can share there experience it would be good 

In the meantime James just stay as positive as you can I go for walks now about an hour at a time just helps me clear my mind.

All the best 

Thank you, Ste62 

How has your appointment gone today?

I'm told the MDT should be discussing me today as they have my biopsies and 2 scan results.

The cancer nurse offered to call me later today with an update post- meeting.

I know lots of people say this waiting is the hardest part and it gets easier, mentally, once you have a plan. But I'm terrified what they'll tell me. Wish me luck.

Hi James ,

went for appointment and was told stage 4 but curable with chemotherapy.

still a bit of a shock as my consultant did not say anything about grade , had another doctor for this appointment who I never seen before.

basically I start chemo with having a  line fitted then 6 hours of chemo at hospital then a pump attached with slow release chemo over 48 hrs.

was also told lots of side effects and I would lose all my hair.

chemo for 3 months then re scan hopefully some shrinkage of tumour and then another 3months of chemo if req.

if the chemo works they will then cut it out and reconnect everything.

so hopefully chemo will do its job.

its been a wild 2months of ups and downs but they have said curable so I got to go with that.

hopefully yours will be ok I had a friend at work who had exact same last year but tumour had not spread so he just had op to cut it out and reconnect with no issues or chemo.

wishing you the best if you had everything should not be long for your meeting.

I have a look at the chemo threads but it does not sound great 

I keep you informed 

Hi JCMcN 

hope your ok 

has you chemo started ? Interested to know what you are having and how you are coping with it.

Hi Ste

Thanks for sharing. Great news that they're confirming it's curable.

Sounds like quite an intense amount of chemo (i don't know too much about that yet). I hope you have people around you for support, and we are all here for you. 

I hope they're able to firm up plans soon for you. Its all quite daunting, isn't it? But we are so fortunate they have treatments and cures now. I'm so inspired by people's stories on here and elsewhere

I posted in another thread on mine: they had said it hasn't spread to other organs (great). They want a PET scan next to check a couple of lymphs and decide if a bit of chemo or straight to surgery. I'm fearful, but taking the win that it likely hasnt spread for me, and that they've said they can ultimately sort it out.

Take care. Thinking of you. 

Hi James and Ste, 

lots have been going on for you both but I  glad you are a little bit closer to starting your treatments. 

Ste - your treatment plan sounds very like mine. I have just completed by 6th round of chemo. It has been fortnightly for the last 12 weeks. I spent every second Thursday at the hospital getting three different types of drugs through my PICC line then home with the chemo ball. Only once during the six sessions did my ball drain as it should and the district nurses had to come back in the Sunday or Monday to do the disconnect. I’ve just had my last disconnect done just now and I get the PICC line removed tomorrow afternoon at the hospital. 

I had repeat MRIs (liver and bowel) and repeat CT inbetween round 5 and 6 so the oncologist was able to update me the day before my last session. 

My tumours have reduced in size (I had a smallish one in the bowel that had spread to six lesions in the liver). The liver team have reviewed the scans and say there are only three visible lesions now and they would like to do a joint surgery with colorectal team. The colorectal team meet tomorrow so I will know more of the plan this week. 

I felt really emotional leaving the hospital on Thursday- the care has been amazing - I feel like I’ve completed the first part of the journey and need to close that door and concentrate on the next bit. 

I never lost my hair but it is brittle and does come out a lot more so it is a lot thinner. I used to talk to it every shower telling it to hang on in there (lucky for me I had a lot to start with but I plan a big chop now to help with all the regrowth).

Feel free to private message me any time about anything- I am a bit rubbish at properly following the threads.

i hope my experience so far has helped you, and others feel more positive about what’s ahead

Hi. Really glad your rumours have reduced in size and that surgery is possible.

How did you find the chemo, if you don't mind me asking? My mum is starting hers on Friday and just wondering what we should expect.

Hi. Really glad your rumours have reduced in size and that surgery is possible.

How did you find the chemo, if you don't mind me asking? My mum is starting hers on Friday and just wondering what we should expect.

Hi MargaretMary,

I don’t mind at all. For me, I found the chemo manageable. They can give you meds for any side effects so your mum should always let them know if she feels something is not working for her or if a side effect appears that she hasn’t anything to take.

I have four children so I wanted to try to keep things as normal as possible and I still managed to work throughout my chemo. That doesn't mean that’s the right thing to do, but it worked for me because it gave me something else to focus on. My work were really understanding and never put me under any pressure. 

She needs to listen to her body and just do what she can. 

I was very sensitive to cold for the first week after each treatment and would feel nauseous (a bit like morning sickness). I only vomited once during the who 12 weeks and had maybe a couple of days of diarrhoea (but not with every cycle) and all this was really just in the first week so by week 2 I felt more or less normal.  

Cycle 2 was the worst for me but I’ve no idea if I was just a bit unwell anyway. Cycle 3 I felt really good and managed to go to my daughter’s 21st. Cycle 4 was just before Christmas and I struggled with that (but again, I think that was more than just because of the chemo, I was just stressing about Christmas).

The time for recovery during cycle 4 and 5 were definitely the longest. I didn’t begin to feel properly myself again until about day 10(so basically the Monday of the week I was due my next cycle) but it was mainly tiredness and feeling wiped out so I just rested a lot. 

My skin is very very dry and tight and got spotty (but so had an antibiotic and loads of cream)because one of my treatments was monoclonal antibody infusion for the liver.   

And here I am, cycle 6 done (it does go quickly and it feels unbelievable that’s all happened and 12 weeks have passed). So far so good but I am realistic to know I could feel rubbish again tomorrow! It keeps me going knowing that in a couple of weeks time I should feel like my normal self!

I think I have quite a high tolerance and focus (my husband thinks I am mental) and as I say, my way isnt right for everyone and it really depends on where you are starting from. I had no symptoms and felt well until treatment started. Although it was tolerable, I am glad this part is over and I wouldn’t be queuing up to do it all again (but obviously I will if I need to because there’s nothing else for it!)

wishing your mum the very best

Clare

Thank you very much for all the information. I'm glad it was manageable for you and I hope it will be the same for her.

Best of luck with your surgery.