Been told i have stage 4 rectal cancer , spread to lymph nodes and with numerous small areas on both lungs. Was initially told chemo would be needed asap to try to hold it back but they think not curable.
This is my second primary as had prostate cancer in 2018 and operation to remove prostrate, followed 2 yrs later when psa started to rise again so had radiotherapy x 20 doses to protate bed in May 2020. Following that my toilet issues / slow bowel movements and regular bouts of discomfort/ constipation was said to be a common long term side effect of the radiotherapy.
I now find out after recent tests that the side effects have bèen masking the side effects of the rectal tumour over the last couple of years which has grown un noticed or detected and now spread to the current position.
My chemo is due to start in next few days so obviously i am very worried about that but also i can not help but feel somewhat let down and angry that this situation has only just come to light now.
Am i just unlucky to have two separate primary cancers in such a close position in the body or could the radiotherapy have actually given me the second primary maybe ? Surely a full scan ( which wasnt done as a regular check on my first cancer) would have picked up the second primary .... i dont know what to think and it seems that no one at hospital i am under wants to give an opinion as to what has occurred .
Hi Norm
Welcome to the forum . Just an aside I have noticed a few posters of late mention having prostate cancer then bowel cancer . Our own wombles is a member of both forums .
https://bowelcancerorguk.s3.amazonaws.com/Publications/TreatingAdvancedBowelCancer_BowelCancerUK.pdf
I have linked in a good booklet that covers the treatment of a spread . My own mum has had a spread to both her liver and lung . Apparently some lung mets are very slow growing and the infact watched my mum’s from 2 mm to 7/8 mm over two years .
Bowel cancer that has spread is a bit more fortunate than some other primaries and there is quite a lot of different chemotherapy options depending on your cell type . It’s certainly not without hope and you will see people on forums on their fifth and sixth year of maintenance chemotherapy and still living a good life .
My mum had chemo over two years , a bit more up and down for her but a small reduction in dose gave her quality of life back .
This thread might help you prepare for chemo and pulls together peoples experiences.
If you are able you might also like to think about exercise /music etc a lot of research currently ongoing about their role regarding Tcell activation .
The whole thing felt unreal to my family too and it took time to let that settle for us all in different ways . Thinking about treatment in terms of disease management and treating it like a chronic condition , reducing the tumour load etc really helped my mum find a way forward . Slowly but surely she made progress .
We are here for you to support you . Do you know anything about your cell type ?
Immunotherapy is also now available to some people so lots of progress going on in the last five years .
Take care ,
Court
Helpline Number 0808 808 0000
Thank you Court
I found the links useful , read them all.
I havent read anything though on managing my expectations of what i will be able to actually do going forward, having been a relatively active (feeling young 63 yr old ) to facing chemo and prospect of not being able to function much ??
I am not a suitable candidate for immunotherapy so ordinary chemo for me with an extra drug infusion on the side avastin . My cancer is already in numerous places on both lungs upto c 7mil each in size.
Fingers crossed that the chemo slows it down.
My mum only ever had chemo too ! It actually managed to shrink one 5cm tumour off the scan ! So it does work well for some people .
63 is very young !
This document looks at staying active during chemo . Obviously very individual but it’s an area we did not think about during treatment .
My mum planned lots of projects . Even if she needed others input she found it helpful to stay connected with her life and not be defined purely by her diagnosis.
She went sea kayaking after her first 6 cycles of chemo . She was 67 and then did it again to celebrate her 10 th anniversary from diagnosis.
She did find it a lot easier to get started and into a good routine , building a bit of trust with her team and reducing some of the fears of the unknown . If you look on the bowel cancer U.K. forum you will see a lot of stage 4 patients still enjoying life .
Hope the first one goes smoothly !
Ask anything you like . Most people here will have been on a similar combination.
Take care ,
Court
Helpline Number 0808 808 0000
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