Stage 4 bowel cancer and maintenance chemotherapy

Dom97 20 days ago

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Hi,

I'd just like to see what people have to say about maintenance chemo, as a few conversations I've had recently have thrown me a little.

For.context, I am 27 years old and have stage 4 bowel cancer, it hasn't spread to another organ, but I think has spread somewhere near the pelvis. I has surgery last September, followed by four 3 week cycles of CAPOX over the winter. I was then just on capcitabine pills.for a following 4 cycles. After this, my first scan was fine, and for three months I was back at work and enjoying life as normal!

Last May, a CT and PET scan had shown the spread, and so I had to do six two week cycles of cetuximab and irinotecan, which I have recently just finished.

The oncologist initially said that it would be 6 cycles and then, based on scans, the cancer will have either gone completely (unlikely) or have reduced it to a point where a second, more specialist surgery could take place.

However, during my last treatment, I spoke to the oncologist and he said that it is unlikely I wouldn't need more treatment in the future. I also spoke to another patient, who had the same treatment for stage 4 cancer which had spread to the liver, who is on maintenance chemo even though his latest scans showed that the cancer had completely gone! These covnersation did depress me a bit, as I was so ready to leave that treatment on a high, knowing it was the last one.

I guess I had never considered the possibility of scans being good but still needing chemo. On a practical note, I can't simply be on and off chemo indefinitely as this greatly affects work and quality of life.

Has anyone had a similar situation / have any pearls of wisdom to share?

court 20 days ago

Hi Dom97

Good question and one I have thought about over the years myself .

It comes down to clinical practice and that can vary between not only countries but within health authorities.
If you look at the USA they having a completely different funding approach to healthcare stay on maintenance chemo for years and years . Our chemo is tightly regulated on health benefits only . However my mums first oncologist was a research oncologist. He actually brought the bowel screening to Scotland and we have had it from 50 years plus thanks to his team . My mum was one of the first to try it out and lived as a stage 4 patient for 15 years . He was firmly of the belief that there is only so many treatment bullets in your arsenal and that is not just limited to funding but what your body tolerates so use them wisely . He would only treat when the scans dictated evidence of a spread . Then you can spread your treatment options out over the long haul !

I am not sure what the current rules are but because my mum had six months between her first six cycles and her second then she was able to stay on her first line of treatment . She only ever moved onto second line treatment 14 years later for a recurrence.

She did had a recurrence in 2014 in her lung but her oncologist at the time said her lung mets are slow growing and chemo does it’s best work on fast growing cells due to the rate of cell division. Therefore she had no chemo for it just surgery . That gave her another six years treatment free .

In between her own immune system controlled the microdisease as it did not show up until her health failed . But I am no scientist so can’t say the cancer biology behind that part , just my own observations and pondering.

I have often wondered what approach is the best but it does sometimes come down to how your country finds healthcare too .
It also sounds as though your spread is local to your primary tumour and we have had people here who went onto have a surgical outcome and back to full health without needing intervention required . I am hoping your that person too .

Remember surgery is still top in many circumstances and second opinions can be really helpful when you want to see how another clinician would handle it .

I wish you every success .

Court

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