Colectomy then 3 months capox- had all clear but 6 month scan shows peritoneum and lymph node 2cm

Hi 

Welcome to the forum although I am very sorry for the turn of events that has brought you here .

My mum had a different pattern of spread but it was classed as significant. If you click on my user name you can see how she navigated through it .

Firstly going straight to chemo was a good plan if not a bit frustrating as surgery would have felt a more immediate solution. However it not only brought the visible spread under control but allowed it to also work on the micro disease that may have been lurking . Gaining stability /shrinkage is very important and was helpful for the seeking surgical options thereafter . It also gives you time to research the options to tackle it best thereafter . If you are hoping for treatments like Hipec there are some surgeons that are set up in centres of excellence around the U.K. . I am in Scotland but Christie’s has a surgeon and I think Basingstoke and Imperial . There is also a surgeon who name seems to come up a lot in London Mr Jamie Murphy and people seem to find him thorough and approachable. Beyond that I can’t say as it’s not an area my mum has actually had to have surgery on and this is purely from reading the boards .

In terms of the one lymph node you also have time to research how others are managing in that area . The benefits of speaking to these specialist centres , they know what other surgeons are achieving where  in the field . Or you could look at the research coming through . I use pub med search engine but with a warning , it’s complex and tough to read when they start going into prognosis etc.  In the early days it was all too much .

The other thing to remember particularly during covid , surgeons can review and take things to MDT meetings from your latest scans .

For my mum she had her chemotherapy , scanned then we started the process of consulting ( by that time we knew who to consult with ) . I can assure you we found them thorough and open to seeking out the best step for her at every juncture. 
Once stability and shrinkage was attained then stage 2 progressed .

You mention adding in Avastin . Do you know your cell type ? You also may want to have a look at our recent threads on Immunotherapy. Some people turning things around on that if it’s suitable . The search function is at the top right hand corner .

The way my mum processed it was to think of it as a chronic condition where she slowly but surely reduced her tumour burden . There were bumps along the way and set backs . However with the support of her team and seeking out windows of opportunity she made progress . Best foot forward was her motto . 

You have experience in dealing with chemo so in lots of ways it was more of the same but in a stage 4 setting you will see the oncologist clinical judgements come into play more than following a standard protocol . Specialist MDT meetings can slow the pace of things down at times but it is not too dissimilar to what you have already endured . Dealing with uncertainty is also a bit more challenging. However there are some wonderful units out there doing incredible stuff and my family are very thankful for them 12 years later !

Take care ,

Court 

  process might be able to encourage you a bit . 
Court 

Hi Datalad

I fully understand the difficulty dealing with the 'incurable' terminology. My husband had a similar experience, going from cancer free to terminal in the space of a few months. The way I'm viewing it is that it's a chronic illness, which treatment can help in getting a bit longer to stay with us. And there is always research and clinical trials etc in the future, so there's always hope.

Of course you have to be realistic and accept that it may only be a little extra time and that's the hard part. My husband doesn't want to give up his battle just yet so we're hanging in there until no further treatment is available. 

We were supported by macmillan counselling, which really helped both of us. My husband didn't want it at first, but then was surprised by how much it helped his mental health.

I wish you a way through this and my thoughts are with you xx

Hi @Datalad I am sorry to hear of your recent diagnosis and it is really hard to take it in, my husband too was stage 3 and in December last year we got the news that a pet scan had shown mets in the peritoneum. The plan was to start 4 cycles of chemo which started this time last year.  I won’t lie this past year has been tough, but my husband is unusual in that he has serious toxic reactions to chemo, he needed to go into hospital twice with that toxicity. He lost weight and strength and had to rebuild. But he did rebuild in both weight and stamina and finally in October, just 8 weeks ago he had cytoreductive surgery at Christie’s to remove what was there. 3 surgeons involved, we went back to see surgeon 6 weeks post op and the good news we were told he is cancer free, so please please don’t give up, several people do go from inoperable incurable to operable and curable.  I hope it helps. Court mentioned the hospitals who do surgery for peritoneum, it is specialist surgery but there are some great centres as Court mentioned and I second what she said about Jamie Murphy, he will sometimes take on patients who get turned down elsewhere.. I wish you well and if you can keep posting if I can help I will. There are great people on here with loads of experience and knowledge and just great support. Xx

Thanks Court,

I appreciate you sharing your experience with your Mum, and reading your message has given me both comfort and ideas for further reading. 

I am finding my feet now and driving forward with purpose and determination. I have had a follow up call with my oncologist discussing markers in my primary tumour, treatment options, trial treatment (in progress and upcoming) and other details... like can I keep swimming!

My original tumour had a KRAS mutation (G12D) and further testing is being conducted for NTRK markers.

The Folfiri and Avastin first line will start in January. I am going in with eyes wide open and prepared to fight hard!

I want to be coming back to this forum with positive outcome, and an ability to offer hope to others. 

The light at the end of the tunnel does exist, and I will continue to move towards it with every fibre of my being.

I am lucky to have amazing support from loved ones; family, friends, pets and even strangers.

This forum is an important outlet for me to connect with others and hear their experiences.

I am ready for the fight!

Thanks again for your message!

Much love and wishing you a happy and healthy 2022!

Luke

Thanks Rabbitsrule,

I cannot agree more that the "incurable" terminology, which was (I believe) latterly known as "terminal", does feel pretty bleak. But I have in my head that this is purely a description given the current status and nature of my cancer.

Cannot be described otherwise without it sounding vague and uncertain. "well, we hope chemo will reduce it, and then options may become available, and possible alternate therapies could be brought into play..." etc...

Like your husband I am by no means out of the fight!

I am strong in mind and body! I will take the fight to the max and push the bounds of whatever I need to in order to be able to get past this stage. 

Like I said above. I want to come back and share victories against this disease! It can be overwhelming for everyone, especially loved ones of those going through the battle.

My heart goes out to you and your husband! I am sure with your love and support he will muster an amazing front against his cancer and diagnosis. I hope he becomes another triumph in the face of adversity!

I will seek out the counselling route too through Macmillan. I am hoping this will be a good outlet for me!

Take care and thanks for your message. It means a lot!

xx

Hi Process,

So happy to hear that your husband has powered through so admirably. You must be incredibly proud of his steely determination, and I am sure your support has been fuelling his fight every step of the way. A testament to what awesome things can be accomplished even when things get so hard!

I have spoken about Jamie Murphy with my oncologist and my cancer is at a stage where the surgical options are not suitable at this time. But I will move forward and fight, in the same way as countless other are doing so...

I am feeling more positive and my energy and motivation is building ahead of the battle to come!

I will keep updating and, as I have said, come back and share my experiences. 

I am in excellent hands. I have love and support and I am going to fight with everything I have!

much love to you and your husband

Luke

x