Recently diagnosed!

Morning Dan

I was not suitable for surgery after first being told it was an option it's all to do with the results of scans and if the cancer has spread. Have you had a PET scan ? They can give detailed results.

I'm sure you will get your oncologist appointment very soon, my hospitals weekly MDT meetings (Multi Disciplinary Team) take place every Wednesday. It's when they discuss us in detail ! Might be worth finding out when yours are ?

Finally they will be doing some research on your bloods and gene history to find out the best treatment options for you. I started on CAPOX as a first line but was quickly switched onto Panitumumab when my gene test results came through ( I wasn't even aware that were testing for that !)

I hope you get a plan and get started on treatment very soon and please bear in mind things may take a little time to get doses and side effects sorted out to create the best possible treatment option for you.

If you're bored you can read my profile but basically I was diagnosed with stage 4 and put on palliative care in May 2022 and if you read Court's mums story that was inspiring to me.

Caroline 

Hi Caroline,

thank you so much for your response. I will definitely spend some time reading your journey. 

I have not had a PET scan but I know I was discussed at our hospitals MDT meeting on Friday. I think yesterdays surgical outpatients meeting was slightly deflating as my wife and I felt slightly ahead of the know how due to my unexpected hospital visit with an infection. So I found out more than I needed to know then such as it had spread to my liver. my bloods were taken again as I’m incredibly anaemic so fatigue levels are low. Thank you for sharing the information on what you were given after your bloods as this is probably why mine have been sent away to look at what will work best. The poor nurse struggled to find a vein bless her). I was told I could hear within 2 weeks from oncology which again is tough as you just don’t know what’s going to happen in those weeks but I remain hopeful and positive. Hearing from people like yourself already adds a boost to the day. So thank you again for your response and I wish you all the best in your continued recovery. 

Dan 

That all makes sense Dan you will find things move quickly now and I'm sure you'll hear from oncologist very soon. In the meantime concentrate on resting and recovering from your infection so you're ready for treatment today start.

Last bit of advice ask everything and anything you want answers to !

Best wishes 

Caroline 

To start not today  

Hi Caroline, just giving you an update but finally heard from oncology for my meeting next Wednesday (April 1st I know ). I’m assuming here is where my life is then planned out and I ask all these crazy questions I have going on? What other sort of information will be passed during this meeting? I hope you are continuing to do well and enjoying some of the sunshine we have. 
warmest regards Dan 

Hi Dan

My Dad is stage 4 with liver spread and has been for 3 years now.

Firstly im really sorry to hear this has happened to you, it does get easier once you have a treatment plan, which is what your appointment will be on the 1st. 

On this appointment they will tell you the plan they have for you which will be chemo , every 2 or 3 weeks and scans every 3 months to check progress. 
This will also give you the opportunity to ask any questions you have. 
With you being stage 4 they will class you as ‘palliative’ or inoperable’ but this can change to operable if chemo works really well, they just wont tell you this as they never raise peoples hopes. 
They will also do your bloods/swabs and give you information booklets to take home to read about said treatment. You then go back the following week, sign the consent form then you get sorted. 

There is also a group on facebook called Bowel Cancer support Group Uk that i find to be really helpful if you have facebook. 

Keep us updated and wishing you all the best ️

Hi Dan 

My dad is stage 4 with spread to liver and has been for 3 years now. 

Firstly im sorry to hear about your recent diagnosis but it does get easier once you have a treatment plan which is the appointment you will be having on the 1st. 
At this appointment they will tell you what plan they have for you whoch will be chemo every 2/3 weeks and scans every 3 months to check progress. 
Because you are stage 4 they will tell you its palliative care to prolong your life but  chemo can work so well it can sometimes turn you operable. They never tell you this though as they dont like to raise hopes. 
At your appointment they will do your bloods/swabs then give you booklets about your treatment to read about the side effects you may get. You then go back a week later so sign consent forms.

There is a group on facebook called Bowel Cancer Support Group UK which i find also really helpful if you have facebook. 

Best of luck with everything and keep us updated ️

Hi, 

thank you so much for your response and well wishes. I really appreciate the feedback you have sent and to know your dad has been fighting a similar battle gives me hope and strength. 
I know that once a plan is put in place, I will feel much more at ease. I think the waiting has been the most difficult for us all so your information is comforting. 
Currently sat awaiting an iron infusion to try get my blood levels back up so hopefully can tackle the next big step. I hope your dad is continuing to fight his battle an wish him the continued best in his journey and yours. 

warmest regards,

Dan

Apologies for the double reply, it deleted all my message so i wrote it out again for it to post twice  

The iron infusion should get your energy right up. Hope it makes you feel better. 
My dad is doing well thankyou , thanks it means alot. 
Let us know how you get on next week 

️

Hi Dan, I was diagnosed with rectal cancer which had spread to liver , lungs at the beginning of October 25

they said it would be palliative care only as the tumour was in-operable, I was started on chemotherapy on 7th November 25, two lots of six, two weeks apart with a break of a month  after the first 6 sessions, as I had no side effects they asked me to carry on with the next lot of six without a break, I has a scan before starting the 2nd lot of six and all my tumours have reduced slightly one of the ones in my liver has reduced by half, I am really hopeful that after the second lot of six it may have reduced again. As at first they told me they didn't think they could reduce any of the tumours and was just hopeful they could keep where it was,  I have been really well on the chemo as I said with no side effect so far, I hope you get your plan in place soon just keep positive there is light at the end of the tunnel