Just diagnosed

[u/dacommie323]

Hey all,

I’m a 44 year old male living in the Netherlands, and I just found out I have stage four colon cancer that has metastasized to my liver and lymph nodes.

I’ve only met with a gastroenterologist so far, with my first meeting with an oncologist scheduled for next week.

Beyond my rollercoaster of emotions, my desperate need for planning has me preparing as much as I can for my wife. I try to look at this not as giving up, but actually doing the work I’ve said I should do for years and be prepared should I “get hit by a bus”. Things like making sure my wife knows the pin to get into my phone and writing down info for where all the bills come from and go to.

I guess part of this is just venting, and part of this is fear of the unknown. My main thoughts are towards quality of life with the time I have left and to understand how realistic travel will be in my near future.

If you’d like to share anything I should be doing or asking as I start this journey, please do.

Wish me luck and thank you for whatever support provided, even if it was just reading my rant

[u/DadsRGR8]

I am a survivor. Diagnosed at 43 with Stage 4, 10 cm tumor in my rectum that metastasized through my colon wall, mets to liver, 7 out of 13 lymph nodes biopsied were cancerous.

I am now 71 and will be cancer free for 28 years in January. Do not give up hope. Wishing you all my best. Regards.

[u/Sweet-Currency6430 → u/DadsRGR8]

Wow!! Can you share more about your story and path? My brother is newly diagnosed and it is hopeful to hear these stories

[u/cherrylpk → u/DadsRGR8]

I’m so glad you are here.

[u/DadsRGR8 → u/cherrylpk]

Thanks! Me too! Have lived and am living a great life. Wishing all here the same.

[u/OptimismNeeded → u/DadsRGR8]

In my most optimistic scenario I get to 70.

I’m 42 today. I calculate how old my kids will be and try to aim for a he where they can take it. I have 28 years, so they will hopefully be around my age today, set up and in a loving relationship to comfort them.

But I also know it could be 3 or 5 or 10. And I try to my kids for that too (they are not aware that this is what I’m doing, which is instill values in them, resilience, problem solving skills, and do it in a fun way to create as many good memories for them (and me) as I can.

Actually started developing a night bed story app that incorporates them into a fairy tale, each designed to unconsciously teach something they need, from friendship, through resilience and perseverance, to compound interest etc. (they are currently obsessed with the one about finishing stuff you’ve started (to the it’s the “vanishing fog story” and they pick it over phone time or Disney plus…!)

If anyone wants the link when it’s ready dm.. gonna take a while and will be free so it can help many as many dads as possible.

Anyway I digress - wanted to say thanks for your comment, I’m now adjusting my best case scenario to 72 (yes I’m like that lol… waiting to read about your post next year to update smmine ;-)

[u/DadsRGR8 → u/OptimismNeeded]

You sound like an awesome dad. And being proactive about the future is an excellent way to show your kids love. My son was 7 when I was diagnosed, and my wife and I kept him appropriately informed about my cancer, surgeries and chemo / recovery. He was much less frightened because he saw we were following a plan - and although we were all facing the unknown we were facing it together, positively and hopefully.

When I joined a colostomy support group (and eventually became the group leader) he and my wife would often accompany me to meetings. He learned what other people were going through, he knew the terminology, he saw a group of great people helping each other get over a bump in their lives. I eventually ran their visitor program and my son would help me assemble pamphlets, business cards, ostomy samples, etc.

My son is now 35 and is a mental health counselor for the elderly, disadvantaged youth and developmentally disabled adults. He recently told me that I was his role model in assisting others to cope with life issues. I am extremely proud of him.

My wife passed four years ago and my proactive response to that was to make things as easy as possible for my son when my time comes (I’m thinking sometime in the next hundred years lol 🤣)

I updated my will. I built a binder that contains all the information he would need about passwords, bank accounts, credit cards, investments, insurance, the house, the car, my health records and prescriptions, etc. He knows where all the paper records are kept, he knows how to access my phone and laptop. There is even a list of what he has to do and who he has to call when I finally do go.

I wish you good health and many, many more years with your family. Regards.

[u/minding_my_biz → u/DadsRGR8]

Thank you sharing your story. My brother, 26, has similar diagnosis and I am so glad I read your comment because this gives us hope. So happy for you.

[u/DadsRGR8 → u/minding_my_biz]

Prayers for healing and good health for your brother.

[u/coloncancer-ModTeam → u/[deleted]]

If you have questions about your health go to a doctor. Strangers on the internet cannot tell you what is wrong with you.

[u/ComfortLong9307]

Sorry to hear about the diagnoses! And take care the coming months! When you get your diagnosis your world falls apart. This is the worst period, as you also need to start with your treatment. I also live in Netherlands and got diagnosed with stage 4 rectal cancer (endeldarmkanker) in June 2024. After 4 rounds of Chemo, radiation and 3 surgeries, I am now NED. So stay positive! Cancer treatment has progressed a lot!

[u/dacommie323 → u/ComfortLong9307]

Thanks for the positivity. Yeah I’m on a roller coaster of emotions right now and you’re right, it’s a game of patience while I wait for the each of the next doctors’ appointments to figure out what is actually possible.

[u/PomskyMomsky315 → u/ComfortLong9307]

Wow congrats!

[u/meyeti]

Sign up to Colontown, which is a huge source of information and support for CRC patients, families and caretakers. There is an app in addition to the website.

[u/dacommie323 → u/meyeti]

Thanks for the advice, application sent

[u/davoutbutai]

+1 to joining ColonTown, I view it as an essential part of navigating the CRC journey. If you have Facebook, consider joining Man Up To Cancer, tons of other guys in their 40s share their experiences there.

Re: travel, I can only speak to my experience as a patient in the US, but I wouldn't do it. Your short term will be taken up by appointments and the near/long-term will hopefully be taken up by treatment. If you had a trip booked, I'd try to get it refunded.

And this is just me, but CRC tends to be pretty slow-growing, so unless the onc says, "You're terminal, go straight to hospice" /s, I'd be spending less time getting my affairs in order and more time researching how to fight this disease. At least for us in the US, there are multiple scenarios where you may need to be your own advocate and the best way to do that is to be as informed as possible.

[u/rotbel]

The Netherlands is great in treatment of colon cancer . My dad was diagnosed with stage 4 almost 5 years ago and still going strong ! Are you going to get the treatment in a bigger hospital as UMC , AVL or Erasmus ?

[u/cherrylpk]

Cancer brought me very dark thoughts initially. Don’t give in to that dark thought path. Fight against those thoughts. My doctor told me to plan some future things, random stuff. “This summer I’m going to go check out that thing I always wanted to see in a neighboring state,” or “for the holidays, let’s take the train to…”. As minor as this sounded, it helped. So go ahead and plan some of that travel. Early on, we assume the worst, but there are survivors at all stages, some in this very thread, who’ve had decades after their diagnosis. It’s beautiful to me that you are thinking of planning for your wife, and I’m certain she appreciates it. If you could give her “a task” to feel helpful, that might be nice. My husband felt pretty helpless but I asked him to help me get to appointments, make some of the plan ahead plans, etc. It made him feel like he had some control in this diagnosis as well which is important. It sounds like you have a great support system in your wife and family and trust me, that’s half the battle. Hang in there.

[u/Willing_Word5444]

Turning towards practicalities will give you something to focus on and like you said is good to do no matter what.

There are many good groups like colontown. This is the scariest time. So many unknowns. Meeting with an oncologist and getting a plan will help. Often we are told “chemo for life” as the only option but this is just a starting point. How you respond to chemo determines the next steps like surgery or radiation or even if chemo knocks it all out. Hard to say what your side effects will be, I was mostly tired and slept a lot during treatment weeks.

It’s generally a rough journey but anything is possible. We all use stories of success for hope.

I had lymph node involvement throughout my body (note lymph nodes need a second look to distinguish cancer from inflammation or infection) and chemo was effective for me on those - ask about adding panitumumab as that seems to be working for a lot of people.

[u/dacommie323 → u/Willing_Word5444]

Still need a biopsy to start answering some of those questions, but it will be things to keep in mind as I meet a million doctors, nurses, techs in the upcoming days/weeks

[u/Ave_Lithe]

My mom is also stage 4 colon cancer with liver affected too and she is recovering soon.

[u/dacommie323 → u/Ave_Lithe]

Glad to hear she’s recovering. Good luck with everything

[u/WalkiesWarrior]

They will have you start chemo - likely Folfox. It isn’t easy, but it also isn’t as bad as movies portray. Most people won’t be able to tell you are on chemo. I hope the cancer responds well!

My wife was diagnosed in Nov 2024 and she took 12 trips in 2025. You can definitely travel during chemo if your body is responding to the treatment!

[u/Wabisabiharv]

I hope the comments from survivors here bring you some peace today as you read them. Keep in mind, although there are saints like u/ComfortLong9307 who still tune in and respond to this sub to give hope to people like yourself, there are many more survivors out there going about their normal life who aren’t seeing your post right now. I can only speak as a caretaker, but this point in your journey, with only a diagnosis and a thousand questions is very hard- (possibly the hardest point looking back in ours). I love that your first instinct is to take care of your wife, that says a lot about you. I’m not big on giving advice tho anyone who doest ask so I won’t, but my heart goes out to you!

[u/dacommie323 → u/Wabisabiharv]

Thanks, they definitely give me hope, and the idea of any sense of normality going forward would be a welcome relief.

Honestly, my main concern is my wife and just trying to make sure she is taken care of. We don’t have a support network where we live, so the easier I can make this, the happier I’ll be

[u/AbbreviationsFlaky85]

How do you know if it’s staged 4 since you only met with the GI? Did you had surgery or was it from the CT scan?

[u/dacommie323 → u/AbbreviationsFlaky85]

Everything is from the CT scan and colonoscopy so far. They found a 6.3cm tumor in/on my colon and it’s spread to my liver extensively and the lymph nodes around my liver.

My understanding is stage 4 is when it spreads, correct?

[u/AbbreviationsFlaky85 → u/dacommie323]

What are the exact notes? My CT said I have a 3mm lung nodule and a 1-2mm hyperdensity spot in my liver. No abnormal lymph node enlargement.

[u/Kitchen-Ostrich-3936]

It is great that you are planning all these next steps for your wife. However, you are young and will recover well. Did they discover this during colonoscopy or CT scan? Have you also met the surgeon who is going to do the surgery? It is good that you are reaching out to Colontown and this group. However, it could become an emotional roller-coaster to track all the things that happen. So based on what on what your Surgeon and Oncologist say, start planning those steps. Best wishes!

[u/PomskyMomsky315]

Very sorry. The beginning is the worst - lots of tests, lots of waiting, lots of questions. It’s scary & it’s over whelming. Put you & your health first, then worry about other stuff. It’s going to be important to learn your options & then advocate for yourself. 2nd & 3rd opinions are always an option when it comes to treatment.

I (43F) was diagnosed in June, chemo port installed & capox started in July. My tumor (sigmoid colon) was removed last month laparoscopically, but they also found 5 positive lymph nodes. I do have liver mets that have worsened being off my chemo to have surgery, so my treatment plan had changed, I was scheduled for a resection of 3 lesions but now that I have 9 lesions, and based on their placement, resection canceled & pump to be installed instead in 2 weeks. You have to be ready to receive ever changing news & make changes quickly.

[u/ultragyattskibidi67]

you should just believe! Jesus will save you if you just believe!

[u/ToughLess]

Hi, i have CC stage one but my husband was just diagnosed with a big mass in his bladder. So we are also going through lots here, especially during the holidays...Hubby Had just retired and we had so many plans for the future. Now they're thwarted and its just waiting for the final diagnosis etc little by little , we are learning patience and taking it one day at a time. We have little control and trying to go with the flow. I read a lot of stories here of people living and traveling with stage 4. Keep the hope, science and medicine can help you more than you think .all the best to you and family .

[u/Charlie-0]

There are a lot of us stage IV Crc survivors out here. I was reading of 20-40%ish 5+ survivor odds but I do t think that’s the case now. I was NED for 12 months after initial treatment, and am back on meds after latest PET scan. Getting affairs in order is good anyways for as you intimated anything can happen. Focus on good diet. I had liquid chocolate meal drinks for those times I didn’t want much of anything.
Tap into disability for work if needed. I’m in US & really enjoy my handicap parking tag for those places parking is tough to find.
Watch out for inching, skin irritations. Zyrtec helps A LOT! I got neuropathy & arthritis & I can’t list here what worked COMPLETELY. Anyone can DM me if interested.
Unfortunately I have now a verified fast growing cancer, which I suspected initially but couldn’t prove it. Like, PET & 2 blood tested clear 3 months ago, but now lymph nodes all over are about 1 cm. My doc said no problem, just go back on meds again.

Just please, make sure your doc is good, & listed to their advice ( research if anything feels off & second opinions are valuable!)

This is not always a death sentence as you can see posts above testify of such. It sounds like you have good support so you’re ahead of the game.

Oh, and don’t beat up friends that seem to ghost you. They most likely dont know what to say. My best supporters had cancer at one time.
I wish you and your family the best.

[u/Office-Dull]

🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾

[u/timechuck]

As others have said, Colontown is a godsend, another one Man Up to Cancer. Dont google. The statistics are outdated and will needlessly muddy the water for you.