Stage 4 bowel cancer

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louise28

Question about hipec and crs

Hi everyone.

This is a bit premature but I had a question for anyone who had hipec. I saw a couple of reports people posted on the bowel cancer Facebook group in which it showed the para aortic or other retroperitoneal nodes were removed during cytroReductive surgery...

I just wondered is that the case for those of you who had crs with hipec? In my case I'm waiting for more info but preparing myself a bit for the worst. I've had only lymph node disease and my hope was radiotherapy would get rid of this but the scan isn't clear (yet) and looks like other nodes affected. It may not be the case but I wondered about contacting Jamie Murphy or the complex cancer people at st marks. No scan has detected any disease in any organs and I've had no peritoneal disease at all so far but it seems like there are few surgical options for abdominal nodes. As I'm young and fit and desperate to do anything I wondered what exactly gets removed in crs. Would the sugeon do lymph node only disease? Or is a lymph node dissection possible. Primary and nodes were removed over two year ago now

:x::x::x:

Baxter2

Hi @louise28,

As far as I'm aware, CRS/HIPEC was initially done for pseudomyxoma Peritonei or PMP (may be wrong spelling!) and later used for metastatic cancer specifically affecting the peritoneum. Certainly for me, I did have a lot of work done (detail in profile) but as far as I'm aware, not on lymph nodes. Others may be different. @Chris82 may be able to offer some insight as I believe he's had CRS/HIPEC twice and possibly various specific lymph node treatment. (Thanks Chris if you see this and hope you don't mind me tagging you?) You could always chance your luck and email Jamie Murphy directly and ask the question as I believe he's very approachable from what I see. Good luck!

Sending lots of love,

Karen 🌸🌼🌺🌻🌷

HH79

Hi @louise28 it can get a bit confusing about peritoneal mets and abdominal lymph nodes but you wouldn’t have HIPEC to treat lymphs nodes in abdomen, HIPEC is for peri mets which is a different beast to abdo lymph nodes although similar area/zone! St Marks isn’t a specialist centre for HIPEC altho they do now offer it - the specialists are Basingstoke, Christie’s and Imperial JM. I have seen people who have peritoneal disease that are having HIPEC for this also have lymph node resections at same time eg para aortic etc and this depends on number and size of lymphs. I have always had when I am not NED, both peritoneal mets and lymph nodes in chest and abdomen affected. I was turned down for HIPEC due to lymphs as they don’t want me off chemo but when I had just peri mets and lymphs clear, I did then have HIPEC. I think in your case IF IF IF (hopefully not!) you have any lymphs in abdomen then hopefully radio an option? But HIPEC would only be if peritoneal disease there. As said, if they did HIPEC because you had peri disease and you had one or two lymphs involved, they could resect whilst there but if there’s lymph activity, they often won’t want to do HIPEC because wouldn’t want you off chemo for some months if they lymphs are active. Hope I’ve not confused more!! And all crossed you won’t need any of this. Lots love :x::x:

louise28

Hi @Baxter2 that's v helpful! Thanks for all the info. I may contact JM just to see if he can confirm either way. My understanding is similar to what Helen says above... I also read a few articles that said that in crs the visible disease like lymph nodes is removed but it seems like there is nearly always peritoneal disease too which I don't have. I have had some contact with Chris too a while ago and he was v helpful! The thing that's been a bit tricky is that lymph node only disease doesn't seem v common. I've had no other spread at all which is good. I have heard for surgery for nodes tho... So will see

@HH79 Your reply was so helpful, thanks. My head is a bit all over the place at the moment and I think I need to see what the verdict is after MDT. It is possible this is all just inflammation after the sbrt I had. That was on three nodes and it sounds like these nodes are slightly bigger and there are some enlarged neighbouring nodes... Since my pet before sabr only showed activity in the treated nodes I am struggling to believe that I've not only had failed treatment to all three nodes but also suddenly the neighbouring region of nodes have woken up 2.5 years after diagnosis as soon as I have radio... But as we all know, cancer works in mysterious ways!!!

Thanks people :x::x::x:

louise28

Just thanking you @Baxter2 and @HH79 and wanted to update in case anyone else sees this

So I got confirmation that sbrt seems to have worked on some nodes but a couple more close by look enlarged. Waiting for pet scan but my team have been in contaxt with sbrt prof in the hope he will nuke the nodes. Basically the plan is to avoid chemo for as long as poss. Im glad to be potentially getting sabr but also it's hard knowing that the long term forecast is that it will come back elsewhere and then I will need chemo. Oncologist says he hasn't seen many people this far in with only this kind of spread and it seems to slowly be working its way up the nodes.
Anyway!
I've a second opinion going into Marsden. And I also contacted Jamie Murphy to ask if this kind of surgery is one he does. I don't think I need hipec as no peri disease. He replied immediately and said yes he may be able to help so I've an appt in two weeks with him... My team here keep saying surgery is possible but not worth it but tbh I want to give myself every chance of getting rid of it!

Anyway it appears JM does a range of other things..basically complex pelvic and abdominal surgery as well as the hipec etc that he is known for.

:x::x::x:

Pb

Hi @louise28 . Hope you are doing ok? It’s great you have an appointment with JM so hopefully he can give you hope and reassurances. :x::x::x::x:

louise28
Quote from @Pb:
Hi @louise28 . Hope you are doing ok? It’s great you have an appointment with JM so hopefully he can give you hope and reassurances.

Thanks how Re you doing? Any news on pet scan/CEA? It's such a rollercoaster right??? :x::x::x:

Baxter2

Hope all goes well with the JM appointment @louise28! I'll be thinking of you!

Lots of love,

Karen 🌸🌼🌺🌻🌷

Wegwe

@louise28 glad to hear that the sabr appears to have worked, but so very sorry about the new nodes. In addition to talking to surgeons, did you consider a 2nd opinion from a different oncologist, too? If your oncologist hasn’t seen many patients with the kind of spread you have, I think I would like to be hear someone else’s view on it, even if that someone else probably hasn’t seen too many patients in your situation either. Hope the surgical option works and you can avoid chemo!

louise28

Thanks @Baxter2
Yes @Wegwe Thats a good point and absolutely why the Marsden referral is in place. You make a general second opinion request to them and they will get it to the right team so will go to MDT with oncologists and Colorectal surgeons!

Pb
Quote from @louise28:
Thanks how Re you doing? Any news on pet scan/CEA? It's such a rollercoaster right???

Keep us posted lovely after your referrals.
:x::x::x:
I asked for a referral for a private consultant to obtaining a pet , but not heard back to confirm if they have agreed to making my referral to the m . Nurse emailed a contact at another hospital for 2nd opinion, but she wasn’t sure if she would get a reply. Repeat bloods next week anyway. Thanks for asking :x::x::x:

louise28

It sounds sensible @Pb Def no harm in a second opinion. Hopefully the CEA will be down again. :x::x::x:

Frances Styles

@louise28, always a mixed bag with this disease it seems. So pleased you've had some success with SABR, and you've the second opinions lined up, love Frances :x::x::x:

HH79

Hi @louise28 good that the SABR worked and sounds like good plan for the other nodes. I’m really sorry you’ll be going through tough wait on PET results. Sending strength for this and you’ll then have good clarity for next steps. Yes, JM does other Ops like TPE and seen some node resections go on as part of these. Also seen this from Basingstoke. So it’s good to have resection options in your mind as well as radio. And when you think of at any point Chemo, lymphs often behave / respond well to it and can be managed on lower maintenance regimes versus ‘big guns’ so lots to go at. All crossed for you and thank you sharing about JM- good luck for appt and let us know what says! I’m always interested on treatment for pesky lymphs, slippery f&ckers :x::x::x:

louise28

Thanks @HH79 For the words of support. The waiting is hard but if radio or surgery are options then I'll be relieved. The oncologist seemed to think the discussions with sabr team were already underway so now just awaiting pet (I guess to confirm nodes are cancerous). I think this is my chance to get surgery if possible. I'd be worried that the nodes would just get worse or not be a candidate for sabr. But as you say chemo is an option. I'm still hopeful for a curative outcome. I guess we all are!! :x: