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Bowel cancer treatment and side effects

fireblade401

Stage 4 peri mets still so confused...

Hi guys. Most prb knkw me by now.... im still so confused and conflicted by varying information.
Why is it everywhere I read on the net including cancer research and macmillan and american equivalents etc that they ambasically say stage 4 colon cancer is nearly always incurable? The reason I ask is that I am going for HIPEC at imperial and the hipec literature says it 'aims' to be curable and my surgeon Jamie Murphy also strongly stated the same. IE it IS possible to get cured via HIPEC and 6 months mop up chemo. Am I misreading things? Is HIPEC aiming to be curative actually saying it aims to cure you of your peri mets only but your actual stage 4 diagnosis means you are incurable? Thats not how I read it as even though the stats are poor anyway I was under the impression that with surgery and chemo it is possible to get completely cured of this. Everywhere i read and even speaking to people I keep hearing that stage 4 is not 'curable'. So confused and send my emotions constantly up and down...

lujabuck

Hello. I totally feel for you as i have thought and struggled with the same. My story is stage 4 and consultants still aiming for a cure. I am choosing to trust them and continue to hope for that. I believe a few factors contribute to the confusion. First stats on cancer are by their nature at least 5 years out of date, if not more, and things in the cancer world are always evolving and infact survival rated are increasing. So i believe my diagnosis 10 years ago may have been terminal but now isnt.
Secondly i expect "Stage 4" can still cover a range of severities. So i would suggest stop googling if you can and go on what your consultants say....and feel free to get them to clarify.

Hope some of that is helpful, it's really tough. Hang in there and read all the positive stories (feel free to shut people down if they tell you about their great aunt marge who died of cancer.....it may be true, but doesnt mean you need to hear it right now)

Sending lots of love

Sasa

Hi @fireblade401 , keep asking the questions, it’ll be all the things that other people have also wanted to ask! That’s what we are all here for too 😁....

All I can add to what has already been said so well, is that statistics aren’t you. They are other people, and every one of us is different. Bowel cancer is one that mutates more than others and stats are out of date, and report other people’s outcomes who (as we know) have tended to be older in the past.

People doing well on the chemo don’t typically go for trials so there are lots of reasons why stats are not reliable.

Let’s face it, statistics can be manipulated to say anything.

Sarah :x:

lorraine grant

Hi there. My very thoughts too. Rectal tumour is our was, a T3 but secondaries in my liver. Wee bits mind, 7mm and 10mm. They went after the chemo. My oncologist said from the get go that he was aiming for curative so I guess it is possible. Obviously some folk can have a number of secondary bits all over the place. I like to think that 51% and 100% are both considered a pass but night and day in comparison.i think I'm 51% stage 4 rather than the 100%. I just don't see myself dying so it's not going to happen. I tell myself that daily.

david watt

@fireblade401 hi, yes with hipec they aim and hope to cure you, but every cancer is different. It is a very complex disease with different mutations such as kras, braf, nras, hras, barca etc. Sometimes the cancer evolves and changes so treatment stops working. If you are lucky and they can physically cut out all the bits, maybe you are cured. Or maybe it will stay inactive for a couple of years. This is the difficult part, sometimes we are not lucky and it grows back, we don't know why and neither do the doctors. Sometimes people are cured with chemotherapy, but it all depends on the unknown which we as people find difficult to deal with. Good luck 🤞 David

mountainwoman

Hi @fireblade401 My understanding of CRS and HIPEC is that the aim is to cure depending on how much/where in the peritoneal cavity the cancer has spread. I don't know your surgeon but they wouldn't suggest they were treating you with curative intent unless they meant it. Unfortunately they can just never predict what will happen in the long run. I am a bit of a googling freak so I know lots of statistics can be a bit scary. When I was researching HIPEC I found the Peritoneal Surgery website at Good Hope Hospital very informative. There are some good little videos in the extras section-a particularly good one with Paul Sugarbaker (the guy who pioneered HIPEC) in which he talks a bit about success rates.
www.peritonealsurgery.co.uk/extras/
All the best.

Bear G

Hi @fireblade401
It’s natural to be worried about all this information and sadly some of it can seem contradictory. As the others have said, one of the things to bear in mind that advanced / stage 4 cancer is quite a broad diagnosis and we as patients can vary a lot.

Please bear in mind that the statements you’re reading on things like CRUK etc are at best a few months old. That’s not to say they’re not correct, rather it’s almost impossible to be completely up to date, and also it’s not really possible for them to encompass all forms of stage 4 diagnoses. It’s important to note that they do us a qualifying statement of ‘nearly always incurable’ rather than an absolute statement, this may seem a minor point but it’s very relevant to your situation.

Additionally, HIPEC is still a very new procedure that isn’t broadly available and so hasn’t had opportunity to impact the overall survival stats.

Also, please remember that most things treated by medicine are ‘incurable’, they just don’t use that term - think about things that can be life threatening like diabetes and high blood pressure, they can’t cure those diseases.

Finally, medicine is advancing all the time, especially in cancer. In the 5 years or so I’ve had this disease I’ve seen so many advances and the survival stats are improving all the time. I’m ‘incurable’ but here I am at 5 years since my stage 4 diagnosis (with an aggressive form of the disease) and leading a full life.

Please trust your team at Imperial, they really are some of the best in the world!

Big hugs
Bear
:x::x:

fireblade401

Thanks everyone for the replies, as usual it all makes sense and kind of confirms what I have been thinking. Thanks again

HH79

Hi @fireblade401 just to add to replies already, look at term ‘stage 4’ as literally just meaning moved somewhere else than primary tumour. Some secondaries can be ‘chopped out’ and people become cancer free eg liver resection or HIPEC etc. These procedures can increase the 5 year survival stats so for general stage 4 Bowel cancer, is a low % ‘recorded’ as being alive after 5 yrs. Some websites will increase this % when px have had liver resection or hipec.
I’m not sure when the cured word is used, I know some want to see 5 years of no evidence of disease (‘NED’ scans) off treatment and others will have less. As I understand it when Peri mets are isolated to peritoneum, HIPEC is with curative intent. At worst, surgeons will want to give you long periods not needing chemo again after. I’ve seen a couple from Shine have HiPEC for isolated Peri mets and both just having 12 and 18mth NED scans since having op which is brilliant :x::x:

fireblade401
Quote from @HH79:
Hi @fireblade401 just to add to replies already, look at term ‘stage 4’ as literally just meaning moved somewhere else than primary tumour. Some secondaries can be ‘chopped out’ and people become cancer free eg liver resection or HIPEC etc. These procedures can increase the 5 year survival stats so for general stage 4 Bowel cancer, is a low % ‘recorded’ as being alive after 5 yrs. Some websites will increase this % when px have had liver resection or hipec.
I’m not sure when the cured word is used, I know some want to see 5 years of no evidence of disease (‘NED’ scans) off treatment and others will have less. As I understand it when Peri mets are isolated to peritoneum, HIPEC is with curative intent. At worst, surgeons will want to give you long periods not needing chemo again after. I’ve seen a couple from Shine have HiPEC for isolated Peri mets and both just having 12 and 18mth NED scans since having op which is brilliant

Yeah, Jamie also said 5 years NED would mean cleared or cured or discharged whatever the term you prefer. He is convinced after my op i will be cancer free (visable) and that includes a met that is on my diapragm he will 'just scrape off' lol and the 6 months mop up chemo 'should' clear up any stray cells. All very positive but of course after the moth Ive just had I am incredibly cautious atm

HH79

All sounds very positive @fireblade401 and great also having some mop up chemo. Also - and I’m sure you will be disease free and not have it come back!! -worse case you’ll have many years not needing chemo and all sorts of other stuff is / will come along. But there’s quite a few I can think of from forum / ‘Shine’ in your situ very much looking on the curative path a year or two since having had HIPEC :x::x:

fireblade401

Yes. Thanks, thats the aim