Stage 4 colon treatment option...going it alone.

[Poochimus]

This is my first post. I am a 61 year old (normally mentally positive) male and after having a colonoscopy due to having blood in my stools/stomach pains (due to blockage) I have been diagnosed with a 4cm malignant sigmoid colon cancer and am now awaiting MDT team to comment on the pet scans I have had to ascertain extent of spread. They told me they need(ed) these scans to enable them to give their options for me going forward. The waiting for the 'call' is uncontrollably mind bending as only anyone who has experienced similar can understand.

I wonder, in preparation for evaluating options when they come back to me has anyone had personal experience of themselves or someone close who has/had stage 4 colon cancer and taken the non treatment option? At my last meeting with the surgeon she kept emphasising that they would support if we chose this option.

[Nicole_GCCA Partner]

Hello Poochimus, Thank you for sharing and I'm sorry to read about your diagnosis. I know that waiting to hear how much the cancer has spread can be excruciating. It is a good idea to connect with others and gather as much information as you can in the meantime. However, I caution that until you have all the information and time to process your options with your health care team, you are working on a puzzle with several pieces missing.

There are so many factors that can impact surviving a colorectal cancer diagnosis. Biomarker (or genetic) testing can tell your health care team information about prognosis as well as what treatments are more likely to work for your particular cancer.

I know countless people who have "beat the odds" and in some ways, we don't know why some people survive and others do not. I suspect a lot has to do with personalized medicine and perhaps genetic mutations that we have yet to discover to how to treat.

I say all this only to offer that times are changing rapidly and I would encourage having these conversations with fellow patients, your medical team, etc. It is good to know that they will support your decision if you opt to not to have treatment.

As you find out more information please share with us if you are comfortable doing so. We want to get you access to all the information so you can make an informed decision.

Thanks again for posting and we're here for you.

~Nicole @ GCCA

[Hidden in reply to Nicole_GCCA]

Thank you Nicole for sharing about the rapid advances in Colon Cancer medicine. I too now have stag4 metastasized colon along with metastasized breast and am desperately needing cancer treatment. I just made an apt. to see their genetic counselor and am hoping he will have some helpful options for me too. Best wishes to you ~

[Nuttyrider]

Really sorry for your diagnosis. Please dont make any major decisions until they have looked at everything. Stage 4 is still treatable to some cases people ending with no evidence of disease. Have they told you where it has spread to. There are lots of support groups on social media that have been a godsend to me.

[Poochimus in reply to Nuttyrider]

Hi Nutty and Nicole. Thank you for your replies.

The MDT have said I have a secondary cancer in my liver but they think both it and the colon are operable. I have to go for more blood tests to check my propensity for chemo. Also have to have angiogram to see if my heart can take the surgery.

Seems lymph’s are not showing signs Howes there are a few ‘swellings’ which hopefully chemo can sort.

Have to say there’s a relief of course that lymph’s are not badly affected.

Thank you again

[Nuttyrider in reply to Poochimus]

I had emergency surgery in May for a 4cm by 6cm tumour also in sigmoid colon. Lymph nodes and veins had cancer in and it is still unclear if nodules in both my lungs are cancer. Just finished chemo and now await scans to see. Sadly my cancer is aggressive and I have been told its almost certain it will return and spread.

For the moment I am just focusing on recovery and mental health. It a bitch but I will take it day by day. That's all we can do

[Poochimus in reply to Nuttyrider]

Hi Nuttyrider. Thank you for sharing...you’ve done/been through so much already and then to be given the ‘aggressive’ news....well my heart goes out for you.

I give you my very very best wishes for you to somehow mentally reconcile all this and alongside send you my hopes that you get all the support in the world to take on, and beat this aggressor....whatever it takes.

[Nicole_GCCA Partner in reply to Nuttyrider]

Hi Nuttyrider,

Thanks for commenting, and so sorry to hear about yoru diagnosis. Did you get biomarker (genetic) testing? Depending on the results of those tests, there may be clinical trials that are good options based on your tumor testing.

Do you have support of family or friends?

No one, not even doctors, can say with certainty that your cancer will return or be responsive to treatment. I think it is good to be mentally prepared (as much as anyone can be) based on your cancer type and how aggressive it is, what the data can predict, but thankfully science is improving treatment options rapidly for colorectal cancer patients. I like your one day at a time attitude - sounds like you are trying to keep positive.

Thank you for being on this site and offering advice to others, I hope we can offer some support to you as well.

~Nicole @ GCCA

[Nicole_GCCA Partner in reply to Poochimus]

Poochimus,

Thank you for keeping us updated. I'm sorry to hear that your liver has been affected - but do know that treatment continues to improve and there is still hope.

Please find out if you are getting biomarker (genetic) testing. This can help determine what treatments may be more effective for you, as well as finding out if your cancer could be hereditary, and therefore your relatives need to get checked. We have more information about biomarker testing at knowyourbiomarker.org

If you let me know what country you are located in, I can look for local resources to connect you - we want to make sure you have all the support you need as you go through this diagnosis.

Please keep us updated and know that we are here for you.

~Nicole @ GCCA

[Poochimus in reply to Nicole_GCCA]

Hi - Thabk you. I had blood taken yesterday for a colotox sample/test. I believe this is for pre chemo evaluation?

Thank you again.

[Nicole_GCCA Partner in reply to Poochimus]

My understanding is that the Colotox will determine if you are at risk for toxicity for fluoropyrimidine based chemotherapies. I am not totally sure but I do think it also helps the determine dosage. But it is a good test because while it is rare for an individual to have a fatal toxic response, if there is a test and it can be prevented -- it should!

It would be worth it to ask your health care team about if they are testing any other biomarkers. And maybe I'm not up to date, perhaps Colotox is also able to test for other biomarkers? Let me know what you find out please.

Please keep us posted and sending you good thoughts as you head into doctor appointments and treatment.

~Nicole @ GCCA

[Poochimus in reply to Nicole_GCCA]

Thank you. I am keen to know if mine is heredity based...is there a test centre near me for undertaking this? We have 3 sons.

I lice in Doncaster South Yorkshire.

Thank you.

[Poochimus in reply to Poochimus]

Live in!

[Nicole_GCCA Partner in reply to Poochimus]

Your doctor should be able to facilitate all biomarker testing, and if they can't or won't, they should be able to point you in the right direction.

Hopefully they are already planning (or have already) done the biomarker testing.

We have compiled a list of biomarkers in colorectal cancer on our know your biomarker website: knowyourbiomarker.org/commo...

There's also a printable chart that might be easier to read: knowyourbiomarker.org/print...

You'll see that most biomarkers are not hereditary. In fact, hereditary colorectal cancer accounts for between 5-10% of all colorectal cancers. But since colorectal cancer is preventable and so treatable with early detection and treatment, it is priceless to know if there is a familial/genetic history.

My advice is to ask your doctors about the biomarkers (you'll see we have a document called "questions to ask your healthcare team about biomarkers" on the website as well).

Regarding resources in your area, there are two organizations that are members of the Global Colon Cancer Association that are in your area:

1. Bowel Cancer UK: bowelcanceruk.org.uk/

2. Digestive Cancers Europe: digestivecancers.eu/

I hope these resources are helpful and look forward to getting an update from you when you have one/can share.

We're here for you!

~Nicole @ GCCA

[Hidden]

Hi Poochimus, Again sorry for your issues. I found out I had stage 3, but turned to stage 4, back in August of 2019. Spots were found lung, kidney, as well. After Chemo, radiation had surgey to remove mass 4cm in colon. Wore a bag for 6 weeks, that was easy. Had plumbing restored. The whole process was not to bad. I live alone but had friends check on me. Now hard part, they found total of 7 tumors, 2mm to 9mm in size. in lunds, waiting to see dr in May about options. A reminder to all with cancer, we learn to deal with it. We are never truly cured, its always in hiding waiting to return , if it does. Good luck

[Poochimus in reply to Hidden]

Hi 'Hidden' - Poochmus here.

I'm sorry I didnt reply earlier after such a thoughtful text. I'm just checking in to see how you are.

I haven't been in a position to repsond earlier for reasons I'll explain in my next reply to 'Trying2 stay alive'. Basically I am well after a whole raft medical snakes and ladders. My 'success' has been undoubtably due to good caring surgeons on first the liver and then the colon. I do hope with all my heart you are in a good place.

[Hidden]

Dear Poochimus,You have my heart in your battle here! So very sorry to hear that you also have this cancer. I am reading this 4 years later, and hoping and praying you were able to get the life saving Cancer treatment.

I too have that same diagnosis and am now in the exact place you were 4 years ago when you wrote this.

I will scroll down and read the messages in hope that you are doing better now. Sending you Warm healing wishes.

[Poochimus in reply to Hidden]

Hi T2SA.

Thank you for your lovely words and care.

I'm travelling at present and don't have a laptop and am too old to write longish emails on my old mobile. But when I get home in 10 days time I will glady hook up and support in any way I can.

[Hidden]

Yay! So Happy2hear from you P. Looking forward to yr messages. Brave Onward!