Stage 4 bowel cancer

Ada

CRS/HIPEC and no primary tumour

Has anyone had CRS / HIPEC for peritoneal tumours and not had a known primary colorectal tumour?

Bear G

Hi @Ada
Could I ask have they actually said that you have bowel cancer?
It’s possible that you could have a peritoneal cancer or it could be secondary to another type of cancer (it isn’t only bowel cancer that can lead to peritoneal mets).
It sounds like it’s worth chatting with your team to ask if they could explain things.
Big hugs
Bear
:x::x:

Ada

Yes, @Bear G, the histology is only consistent with a bowel cancer, but I never had a colonoscopy before starting chemo, there were no visible bowel tumours in the CT scan, and now the tumours overall have shrunk through chemo so we might not be able to figure out where it started. I was originally diagnosed with ovarian cancer until the histology showed that it must be colorectal and I have responded well to chemo that is targeted at CRC. My specialist said that I may not be able to have surgery if one does not know where the primary is / was, which makes some sense. But I can also imagine how one could work around it and was wondering whether somebody was in this situation.

Ada

I wonder whether there is a confusion. It seems that not knowing the exact location of the primary tumour in the bowel should not proclude cytoreductive surgery. But not knowing the type of primary cancer (colorectal / unknown primary) would, though? So it seems I should have a chance that cytoreductive surgery would work given that we are pretty certain that it is colorectal. Does anybody know? I guess I can wait what Basingstoke say. But I don’t want to be discouraged groundlessly while I can’t do anything but wait.

Bear G

Hi @Ada
I agree with you, it seems knowing the type of primary is the key thing here. Not only do you have histology but also the clear response to chemo (which regimen were you on by the way?).
I would expect them to want to do a colonoscopy at some po)not as that gives a much better view of what’s going on in the bowel.
Have you already been referred to Basingstoke? It’s an excellent centre with a great reputation, I’m sure they’ll be able to clarify things for you. Do write down all the questions you have though, it’ll help when you’re in your consultations.
Big hugs
Bear
:x::x:

Ada

Thanks for your help, @Bear G! I have my eighth round of FOLFIRI and seventh round of Avastin tomorrow. My clinical team has referred me to Basingstoke nearly three weeks ago, and I have not heard back yet. I guess it may take a while.
Because of the Avastin my specialist does not want to do a colonoscopy now as it may increase the risk of bleeding. I don’t mind letting the FOLFIRI / Avastin continue to do its magic in the meantime, but can’t help thinking about what surgery might mean for me. I was sort of resigned to being inoperable because of the initial tumour load. So this is opening many questions now.

Bear G

Hi @Ada

That’s the regimen I was on for my first 6 months, it worked wonders for me too.
Yes, Avastin can increase bleeding risk so best to finish the course.
It’s possible that Basingstoke will review your notes and scans before speaking to you so that could be going on behind the scenes.
HIPEC is a big op, I’ll tag @Baxter2 who’s had it to see if she can give you a heads up should they say ‘yes’.
Big hugs
Bear
:x::x:

Baxter2

Hi @Ada and thanks for the tag @Bear G

I had CRS and HIPEC in March 2017. I do remember I was first referred to my liver surgeon there in around May 2016 and know that he took my case to the MDT for discussion as I had peritoneal mets as well as a solitary liver met. There were a few communications via letter and telephone basically suggesting I continue the chemo (Folfiri and Cetuximab) for longer as it was having a good effect in shrinking both the peritoneal and liver met. I was eventually seen by my colorectal surgeon in early September 2016. The decision was to offer me a laparoscopy to assess my abdomen for possible CRS/HIPEC. I had that done early October and was delighted to hear the peritoneal mets were not as extensive as thought on CT scan. They initially offered a combined liver resection and CRS/HIPEC then on reflection, decided that this would be too risky for me. My liver surgeon wished to do ops seterately and again, wanted me to have a little more chemo! I eventually stopped chemo mid Dec 2016 in preparation for liver resection on 25th Jan and CRS/HIPEC 20th March 2017. As you can see, there appeared to be no hurry as I think it's probably important to get the timing right and operate at the optimum time.

I did take a while to recover from the op (see profile for detail) but from early Aug 2017 I've felt fully recovered from the surgery and pretty 'normal'. I started chemo in June 2017 so that affects me a bit I guess so never feel I'm quite firing on all cylinders! I live a good life and feel pretty fortunate to have had the surgery.

Regarding your ? Primary tumour........I'm. Sure @Tiffany's hubby had a similar experience. Hopefully Tiffany can clarify with you.

Good luck and best wishes to you and please keep us posted on developments! Feel free to fire away with any questions or queries!

Karen💜💚❤️💙💛

Ada

@Baxter2 this timeline is really helpful in managing my expectations re: time. Thank you very much!

Tiffany

@Ada

Hi there and welcome to the forum. @Baxter2 is correct my husband was in this very situation four years ago and as you've probably realised there is not much information available as it is an unusual situation.

Mike was diagnosed with cancer and had extensive peritoneal metastases . His primary was never found......it was assumed to be bowel cancer.

He was on FolFox with Avastin for six months (12 rounds) and then 5FU with Avastin for the next two and half years! You can click on my name to read the whole history. You will also see Mike never had any surgery and is cancer free.

There is potentially hope for a cure without HIPEC so I guess it depends on the success of your chemo. If you read Mike's story and want to ask me any questions please do either here or privately and I hope we can help you.

Lots of love Tiffany :x::x: