Radical surgery for stage 4 bowel cancer

[Ali108]

Hi  

I have always been healthy, ate well, positive approach to all that life throws at you etc but balaced with enjoying life too 😂

Diagnosed with bowel cancer stage 3, 8 months ago.  Tumour removed 7 months ago.  Been on chemo,  which was awful for me.  Cancer progressed to stage 4 and now in kidneys too. Chemo was stopped and I commenced on immunotherapy which seems to be working for me - more energy, no pain at tumour removal site, can participate in activities with joy and positivity.

Although I am feeling good and am managing the side effects so far, I have aggressive mutant cancer cells and the possibility of radical surgery looms in front of me.  It is likely to be the removal of several organs and I am not sure yet whether I will go ahead with the surgery. I don't want to live a half-life - dependent on others and my days filled with appointments and other stuff to monitor and support the impact of the organ removal. 

However, before I can make the right decision for me (and my family), I feel I need to find out from others who have been through surgery and removal of  rest of bowel, sections of liver, kidney and maybe more.  What is life like for you? How do you manage the complexity of this on a daily level, your emotions, independence, positivity etc. 

I have a feeling that if the oncologist says it's time for surgery, I want to have some understanding of what it might be like post surgery.  Then, I can weigh up the impossible decision between a life filled with ongoing medical (and psychological) management and one that may be shorter.  

Who knows how the future progress of my cancer will unfold, but I would like to have as much information as I can, to help me have some kind of agency over how I want the remainder of my life to be.

No crystal ball for any of us but I would like to live (and therefore die) with open eyes and clarity, and accepting what comes with the choices I make.  I want to live longer but I want to be prepared as best as i can manage - for what comes.

If you are willing share your journey of multiple organ removal in the bowel area and how you coped with this, I would be deeply grateful 🙏 

[joseph_CCNSW]

Hi Ali108.  Hello and thank you for joining and posting here. This forum is a wonderful space and hopefully you will find care and support from others who share their experience.  You may also find it helpful to search Cancer Council NSW's  website or to call Cancer Council's 13 11 20 line for information on dietary options. They can also talk with you about the range of services available to support you.   Kind regards ... Joseph_CCNSW

[Cindi54]

Hi @Ali108 ,

Oh I'm sorry, you HAVE been through a lot and facing a lot too, must be very hard for you.

I hope someone else comes along with advice about bowel removal as I haven't had to have this done but do know of others who have a colostomy bag and seem fine with it. I can imagine it would take a while to get the hang of it though.

I had to have my right kidney & ureter & bladder cusp removed due to cancer, but it wasn't too bad at all.

I must admit the chemo wasn't nice though and has left me quite shattered, but it hasn't been that long since stopping, so I intend to get my strength and brain fog cleared.

I know you need to decide, but having it all done I feel you'd get used to it after a while and at least give yourself a longer life, and you sound like the sort of person who would get back into enjoying life again pretty quickly.

But it's up to you of course.

Think positive, it's amazing what they can do now, but reach out here, as we all understand as we are also fighting cancers of some kind.

Wishing you strength and sending you a cuddle,

Cindi xx

[Ali108]

Hi Cindi

Thank you so much for taking the time to reply.  Your kindness has touched me.

Sorry to hear that you have had to have various parts removed but sounds like you have dealt with that really well. I appreciate you sharing that.

I have had the amazing news that I don't need surgery at the moment - the immunotherapy is really working for me.  It's such a turnaround in my prognosis.  So for the moment I'm focusing on staying as well as I can but still would love to hear of others' experiences.

Thank you Cindi. 🙏 go well. 

[Cindi54]

Hi @Ali108 ,

Yeeaa!! that's great news, I'm so happy for you.

Whats the immunootherapy like? how do they administer that?

Hope all continues going well for you and please keep us updated.

Take care,

Cindi xo

[Ali108]

Hi Cindi

I know it's amazing.  

Immunotherapy is by infusion in the Oncology unit.  Similar to how they do chemo - but less frequently and less time for me.

I suppose the timings and frequency are different for everyone for everyone.

And hope everything continues well for you.

Alison