Just diagnosed

If you've recently been diagnosed with bowel cancer, our website has lots of information to help you understand more and get the support you need.

Beany

Inoperable para aortic lymph nodes

Hi, I'm 41 and was diagnosed last month with colon cancer after a bout of supposed 'food poisoning' in Feb this year. I had a left hemicolectomy last week and I'm back home now so first hurdle is over :) The surgeon told me they could not remove all the tumour as some of the para aortic lymph nodes were in a location too dangerous to remove them. I just wondered, is this classed as stage 4? My colorectal nurse has said it's unlikely the chemo will remove the cancer in these nodes though it's not certain how my body will react until the treatment so I must stay positive. I also wondered if anyone else is in a similar situation please?

HH79

Hi @Beany. Welcome and sorry to hear about your diagnosis. Lymphs is stage 3, once moved to somewhere else in body is a stage 4.( I started with lymphs but once was in peritoneum became a '4'.) Try as ever to keep optimistic about treatment
. Chemo might really kick it into touch and you'll be rid of it or just have regular scans and Chemo if it grows again. If the chemo shrinks them well, you could be eligible for radiotherapy (have a google SABR) which can hold it back for couple of years and sometimes can be curative. Do shout if any qu. Well done on getting through all so far. If you're on Facebook, you might find 'Shine' a good support to which is for young people with cancer (all types but lots of bowelies on there). :x::x:

Beany

Hi @HH79 thank you for your reply :) From what they've said (and I'm waiting for the histology report to confirm) the tumour was the size of a pomegranate and there was a lot of local spread. I guess that means it was in the peritoneum so I'm prepared to be stage 4. I am hoping to be offered the 6 months chemo though I haven't seen an oncologist yet. I will google SABR - thanks! My nurse also said they had one patient who has had mets in his para aortic LNs for the last 9 years that they control with chemo/RT so there's definitely hope, so I'm really trying to stay determined and positive. Who's to say what new treatments may become available in the next few years too. It's all come as such a shock to be honest I don't think it's all sunk in yet. It's been really good finding this forum and knowing I'm not alone. It's great to speak to people going through a similar experience :x::x:

HH79

Hi @Beany fingers crossed it's not spread far. But you'll feel better and more in control once it's all confirmed and treatment starts. Worse weeks of my life were the waiting and wondering whether I was a 4 as opposed to confirmation. I had 6m Folfirinox, side effects ok (Oct-March) and a PET scan in April showed nothing in peritoneum and v little in para aortic lymphs. Chemo is bloody good stuff! Sending you lots of positive results and hang in there. :x::x: ps if you do get told spread in peritoneum, google HIPEC! (Remove it, Chemo in abdomen etc) all sorts options! And totally banned from googling stage 4 survival stats. You're young and fit and can tolerate strong Chemo, surgery all sorts! 95% bowel cancer px over 60 so those stats look worse and they're 5 yrs old. Good luck and go forth to do battle!! :x::x:

gun-dog-lass

Hi @Beany a big warm welcome from me. But sorry you have foumd yourself here. We a good bunch and will be with u on this journey :x::x:

Lizalou

Just saying 'hello' @Beany It sounds as if you have had to get your head round so much in a very short space of time, so sending lots of sympathy. Don't forget that you can ask the nurses anything technical and have a look at the leaflets which are easily downloaded from their page.

Many thanks to @HH79 for so much sensible advice, support and info about those dreaded statistics.

Rach

Hi @Beany I can't answer your question but wanted to say hello though I'm sorry you've had to join us. We're here for you every step of the way. Sending love and hugs to you :x::x::x:

ruthy

Hi @Beany. I was diagnosed 2 years ago and had para aortic mets at the time I was diagnosed. The are classed as distant lymph nodes, which is stage 4. I was able to have mine surgically removed, and then had radiotherapy on a para aortic node recurrence in January this year.

Node only spread is unusual- welcome to a very exclusive club! Because we are unusual there is no typical treatment pathway for us - i would suggest getting started on chemo asap (you team will be keen for this to happen too so should move things along once you are recovered) then once things are stable exploring more with your team and getting second opinions on treatment options. I know of some people who have had radical surgery, others who are in remission after radiotherapy and some who are keeping their cancer inhibited using low dose chemotherapy. The first priority is to stop the cancer spreading, which is why you will have a course of hard-core chemo before thinking about other options.

Chris82

Hi @Beany and welcome. I previously had cancer in my peritoneum and liver, though those are clear and I am left with various lymph nodes infected. They are currently being controlled by 'maintenance' chemo 2.5 years after diagnosis. I have had para aortic nodes surgically removed too, though the current ones elsewhere are inoperable.

OFJ

Hi @Beany just wanted to say hello and welcome to the forum :x::x::x:

tisme

Hi, have you been offered chemo or radiotherapy to shrink the tumour to remove it. My daughter had a tumour next to her femoral artery. She had chemo and radiotherapy they basically shrunk it by a few millimetres that's all they needed and removed the cancer tumour.

njm80

Hey hun.
I've just been discharged. Back home in bed. How are you feeling after the operation? :x:

DianeS

Hi @Beany so sorry I can't help with your question, but would like to say 'hello' and welcome you to our forum Diane :x::x::x::x:

LankyYankee

Hi @Beany :x::x: i was diagnosed stage 4 in January this year at the age of 41 as well. I have spread to lymohnodes and bones but not liver or lung yet. Because of my type of spread I'm not operable. I'm on hardcore Chemotherapy which I imagine is exactly what your team will be prescribing you. It's so much to get your head around. Like @HH79 and others have said....there are treatments out there including Chemo but it's Chemo first. You will have blood and tumour marker tests to determine which treatment is best suited to your bowel cancer. My word of advice is not to let them dilly dally with appointments. Get cracking on ASAP to see your oncologist and then again for Chemo immediately after you make the decision with your Dr. The aim is to knock your cancer back considerably in order to buy time to consider other treatments like surgery, radiotherapy, HIPEC etc. I'm currently on cycle 10 of multi agent chemotherapy (ie. I'm on 4 different drugs in each cycle) the side effects haven't been great but then they haven't been unbearable either. Everyone responds differently and what some people sail through others sink in so just try to take it one day at a time. I know how hard it is. I can practically hear you screaming....But I'm only 41?!.... Or is that me screaming that! Lol We are all too young for this disease no matter how old we are. But do try to remember that the stats out there are based on 65 year olds and above and not 40 year olds. It means we are in a bit of a no man's land with regards to Stats but it also keeps open the Hope Gates and they in my opinion are the most important part of all. I have 3 kids aged 7, 12 and 15 and I'm an acute oncology nurse specialist in my day job. I've just returned to work part time in last couple of weeks and ive just gotten married so really anything is possible at this point. Let's get you through some Chemo first then when things start to settle in we can help as your sounding board for other treatments. If there's anything I can do don't hesitate to contact me. I'm a bit hit and miss on the forum at the moment as I'm working and was planning my back garden wedding but I'm also on Facebook and you are welcome to message me any time if you need support or a shoulder. This is a fantastic community and although no one wants to be here you are still surrounded by love and support. Take care please :x::x::x: Lanky Yankee ps my Facebook is Laura Denaire :x::x:

steve707

Hi @Beany. just wanted to say Hi and welcome you to the forum. Its good that you have found the forum there is so much help and support here. :x::x::x::x: