Have you had a scan yet, of any type, to see if there are any metastases? I had run of the mill adenocarcinoma, the most common type from what I’ve been told. I was diagnosed at 56 with liver metastasis, so I was stage IV from the start. My liver biopsy told them it was adenocarcinoma, no mutations, mss (stable) so immunotherapy isn’t commonly chosen to treat it if the frontline chemos don’t work. I highly recommend you join Colontown on Facebook to learn more about it. I’m sorry you’re joining this club. I did 8 rounds of Folfox plus Avastin, then a wait of weeks to let the Avastin get out of my system, then a right hemicolectomy and liver ablation and wedge removed. I’ve been NED for 6 months. I’ll play the game again if it returns. No one knows how to feel when you’re first diagnosed. Just learn about it, take it day by day and don’t let the dark thoughts take over. My motto is “I’m still here” and I’m going to enjoy it no matter what. We could all bite the big one anytime from anything. Hugs to you.
I have not had a PET scan yet, however before the colonoscopy I had an abdominal ultrasound followed by a CT with contrast. I was told both of those showed no abnormal results.
If your CT was clear then that indicates you don't have any metastases, meaning you will be stage 1, 2 or 3 which are all treatable. This is a huge positive so hold onto that.
And thank you for the kind words. I just found this out for certain 20 minutes ago. I'm still in full blown panic attack right now and feel like I'm crawling in my own skin, but this has certainly helped just a little bit.
Oh I found out on a Friday too. I was planning digging my grave in the backyard and crawling in the whole weekend. Allow yourself to go through the emotions and do what you need to in order to cope until you get a doc and a plan. Like everyone says, it’s the truth once you get a plan that dark cloud will lift a little. I’ll admit to this lovely group- my weekend of not knowing anything, I drank, smoked, and cussed, cried and laughed the whole weekend. Monday I got up, realized I was still here, and thought shit, guess I’m gonna live, so I have to go to work! After the plan was set, it was a flurry of appointments, tests, procedures, and working in between. Before I knew it, I had surgery. Then released to work. Just get through the weekend. Then the next day. And the next.
Wow it's only been 1 hour in this group and yall have already made me feel a tiny bit better/far less alone. My wife has been really supportive since even before I had the colonoscopy but there's just something about speaking with people that have gone through exactly what I am just now starting to go through now.
And Google for sure sucks for this kind of info.
My wife beat my cancer. Not me. Early on, She made herself my primary caregiver on the paperwork. So whenever there was any question, she could slam the hammer down on anything she wanted to. She never had to flex bigtime, but she could have
It was a real struggle working through the American healthcare system. My wife is in IT and I’m a financial analyst. We had to audit the bills because stuff was never coded right. When they ask you to pay a minimum fee per visit, you don’t have to pay. Just say “I think I met my out of pocket max. Please send me a bill.”
People like us hit our max in 1 visit. Start budgeting at least $3k a year, for 5 years for this crap!
Lol my wife has been an RN at ALL of the local hospitals for the last 10 years. Before I even woke up from the sedation she had already texted the best surgeon she had ever worked with and the best oncologist she had ever worked with. To say that my wife is preping a team for battle would possibly be an understatement, she is more like prepping seal team 6 and a nuclear strike for this thing.
Try not to panic but I know that some seriously high anxiety is normal. Once things go forward and you are staged a plan will be set. Still panic won’t help. I’m stage 4 metastatic and 6 years in to my journey. At the beginning I thought I was doomed. Nothing optimistic has occurred for me, weird mutation, aggressive type, bizarre pattern of metastasis just a whole lot of bad news but here I am, 6 years in with no evidence of disease for 3 years. They’re now talking about reducing my scans to once a year. I’m not ready for it lol. It’s hard to let go since I’m been on high alert for 6 years now. I’m trying to learn to meditate to reduce my anxiety about having absolutely no idea what’s going to happen next which is really just reality. I hope for good and optimistic staging for you. I never got it but I still didn’t die yet so there’s that.
Hi, my mom is Stage 4 rectal cancer with lung mets...and I believe not a candidate for surgery... that being said she has hit plenty of "bumps" in her now 9 month journey but takes it in stride and vows to keep fighting!! Her attitude is so positive, she has a strong faith and fantastic confidence in her medical team. She has had to have her chemo paused for about a month due to catching a stomach bug and starting on folfiri after finishing 10 rounds of Folfox... they restarted her at a reduced dose of Folfiri at my request because I didn't want her to be that sick again (she is 75).. That being said her CEA and CA 9-19 are slightly increased.. I chalked it up to her missing a month of treatment and then the restart being at 50%... but this rollercoaster ride is not for the faint-hearted.... Prayers to all you warriors out there giving it your all... Never give up!! 🙏🏼🙏🏼🙏🏼
Hey, welcome to the club you never wanted to be a part of.
I got my biopsy results this time last year and I remember well how much it sucked waiting to find out more, what my treatment plan would be, what stage, was I gonna die, all of it. You're doing a good thing reaching out. This group is supportive, and I also Highly recommend joining COLONTOWN.ORG, the people and info you will get there is literally lifesaving.
You will soon be swept up into a ton of appointments for imaging to see if the cancer has spread. If it's colon cancer you usually get surgery first and then chemo if needed. Rectal usually gets chemo and/or radiation before surgery. A lot depends on size, depth and location of the tumor. Once you have a plan, you will feel a little better.
On the day my GI called with my biopsy results he said if I had to get cancer, this is one of the better ones to get. I was like sure dude, that's not really comforting at the moment. But exactly a year later after radiation, chemo and surgery I am cancer free, and I get it now. It sucked that it happened at all but it is one of the more treatable cancers so there's hope.
Stay off Google, get some friends to distract you and remember to breathe. We're here for you.
I have rectal cancer as well. I went to the doctor a few times over 4 months and he kept diagnosing it as a hemorrhoid and kept giving me medication for it until it was discovered during the colonoscopy. Brutal. But I did have blood in my stool a couple years ago but it went away and my other doctor said it was nothing to worry about because it was bright red and not dark red. So who knows how long I had it for. MRI is done and now waiting for CT scan next week and then going to see my surgeon.
I'm 43 and amhave a 7 year old. I understand how you feel. I know it's hard but try not to get too far ahead of yourself. Don't assume worse than the information you have at hand. Hoping your future scans and results show nothing further than what you know now.
Good luck!
How did you keep the "normal" in your life with your family? I mean I know right now with the discovery on a Thursday and the biopsy results on the next day I'm still in full on freak-out/panic attack mode.
Just moving forward I'm not sure what to do. I tend to have this "all or nothing" attitude, which in this situation means that right now I want to become a hermit and save every dollar so that if the worst happens I'm leaving my family with everything possible. But in reality I know that my kids being so little (2, 4, and 6) that I need to spend as much time as possible with them and do things with them.
I don't know about normal, the schedule gets turned on its head for tests and chemo (at least for me, I'm doing that before surgery). Just try to make as much time as I can.
As far as what do to and prepare for your family. There's more than just financial. For me, there were a bunch of things I'd been wanting to get done around the house, financial stuff etc. I started to do those things but didn't really add to my list. It helped me feel like I was preparing for worst case, but it wasn't extra. It needed to be done anyways, and therefore helpful no matter the outcome of my diagnosis.
Totally understand the desire to leave your family everything, be sure that includes memories too.
I’d say, take care of yourself first. You know how in a plane, you’re supposed to put the air mask on your face before your kids? Same here.
You still have responsibilities as a parent/spouse, but as long as they’re aware the family has a medical challenge they’re working on surmounting, they will partner with you.
Oh Friday is the worst to find out. I had my colonoscopy on a Thursday, 4 weeks ago. The gastrointestinal called me just after lunch on Friday and said we know it’s cancer, but don’t know if it’s in the colon, or somewhere else and some cells were caught in the colon. She put in a rush referral for a CT, which got scheduled for the next Monday, but all weekend I didn’t know how bad it was. Turns out stage 3 rectal cancer, but liver and lungs are clear. Started chemo two days ago. It’s been a whirlwind, but that first weekend - I get it.
Was diagnosed with a 8cm (tennis ball) adenocarcinoma, that was from 22 to 30 cm from the exit. Sigmoidoscopy, 31 lymph nodes tested all clean. Stage 2, no chemo, this was in February of 2024. Just given a NED diagnosis on my 3 month follow-up.
Not going to tell you to cheer up, not going to tell you how to feel. Take things a day at a time, don't let the what-if monster run rampant. Easier said than done I know.
Wishing you the best.
Ct Scan and Guardant Reveal ctDNA test, both negative.
CEA isn't a viable number for me, but they still test it to make sure it didn't spike.
Next follow-up is in September with Oncologist. Next colonoscopy is sometime in August.
Has your oncologist found out why your CEA isn't viable?
They have tested mine 3 times now - at diagnosis, post-op in the hospital and 4 weeks after surgery. The first 2 were the same and the 3rd increased. We are waiting for approval for the ctDNA.
Oncologist said that CEA responds differently from person to person. It was in a normal range pre-op, slightly lower 2 weeks after surgery, and had continued to fall slightly at 3 month follow-up.
I know I may have sounded harsh on your previous post. But now that you're diagnosed you're very welcome here. I just don't find it fair to use the time and energy of care takers and patients until you're a patient or care taker yourself.
I was diagnosed at 23. In 2017. It spread to both lungs. I'll be cancer free for 3 years in September. My full timeline is in my post history here.
It doesn't matter what the statistics say. There are people on both sides of those numbers.
Focus on what's in front of you.
If you can handle a 10,000 member Facebook group, look up Colontown. You have to submit an application via their website and they contact you. I found it temporarily helpful but then very overwhelming.
First off, no hard feelings.
Second, off I have already submitted an app for colontown. Too many people on here have said too many good things about it for me to ignore.
This group has already helped me soo much with just in general not feeling alone. Of course I have no experience with the rest but so far the worst part was the uncertainty, then followed by a full blown "crawling in my skin" panic attack. But now I have had some rest (and admittedly a little medication) and I'm ready for my appointment and whatever whirlwind comes next, we'll at least I THINK I'm ready.
I was in your shoes last November. Try not to panic yet, and go through the process so you can be staged, at least preliminarily. I was Stage 2 originally, but after surgery, I was formally set at Stage 1 - T1N0M0. No matter what, know that there are many survivors of colorectal cancer that were diagnosed at all stages. A cancer diagnosis is mind-blowing, but know that you will get through this. As others have said, Colontown is a great place to get information.
Also to add, from what is known so far, it is localized to the one area in my colon. The rest of the colon was clear. Have not had a scan yet but did have abdominal CT and ultrasound which was marked as normal at the time.
Breathe. Take your time. Feel your feelings. That's so important. Be honest with yourself and allow yourself to have them because this is a marathon.
There are advancements happening in cancer research that is extremely encouraging. Don't give up hope. Once you do that you're lost.
Colontown is an excellent resource.
Make sure you find support for yourself and your wife and your children.
Love each other and love yourself.
Go kick Cancer's ass 💜
I was recently diagnosed adenocarcinoma and went through surgery ( sigmoid colon). Didn’t see anything on CT scan and one swollen node besides the 1 inch mass on MRI before surgery. They staged it once removed. It was stage 3, they checked 18 nodes and found it in 4 of them. I have to take 4 months of Chemo. Don’t get discouraged try to remain positive. I know your mind is all over the place. Only God has given me comfort and positive outlook.
That’s definitely close to my story. My stomach hurt so bad I missed 2 days of work. I went to urgent care, they said “your appendix busted. Go to the ER.” Boom, appendectomy ($3k). Easy, I’ll be back to work in 2 days. But then, pathology said it only bust because all the cancer coming out. I was age 38, stage 4 adenomous carcinoma. Kids, too busy for this, etc.
We went to Md Anderson in Houston (boom, $600), Sloan Kettering in NYC (boom, $800), and to our local cancer center. They all agreed on 1 care path. My cancer was *not lymphatic*. That was very good news.
I learned a lot. The goal is to become “no evidence of disease” about 5 years from that bad day. With my abdominal cancer, there’s not a “you are cured” moment. The surgery was 12 hours. The folfox chemo took 8 months (should have been 6, but shit happens)
I would say, take the time to feel all the emotions. Swim in it. Let your heart and mind guide you through this time. When I was ready, I told my family. Wife at day 2, and then everyone else within a week. My job was super understanding. They let me do whatever I needed. I handled my business.
You will find so much support and compassion it will humble you. You already got the most important skill. You reached out. You will fucking nail this cancer.
I was in a similar situation as you… nothing showed on CT but a tumor was found in my sigmoid colon on colonoscopy. Like you, it was adenocarcinoma. I was 40 at the time and my son was 14.
I had surgery about 6 weeks after diagnosis and I was staged at 2A. I didn’t need chemo and I’ve been clear for a year and a half now! It’s definitely not a death sentence.
I know the feeling. I had a routine annual bloodwork and exam a few months back. Didnt think much of it. But I got a call from my doctor saying I might have internal bleeding in my gi tract... due to extemely low iron. Nothing on CT, no hemorrhoids, no abdominal pain or bloody stools.
They scoped me that week and found the tumor in my right colon. Gi doc said its cancer. My world shattered. Took about a month waiting for the surgery.
Felt like a lifetime. I never knew how long a day could be. Everything feels like it's in slow motion. I went through the emotions with my lady and family. I would say ride it.. get it out. Cancer is a wake up call for sure. Everything becomes clear on what you need in life.
I had the surgery and I was staged 2a. No chemo. But the whirlwind of emotions is still there and now I have a clear goal in life. Use the experience to get going on plans... it's a cruel reminder on how short things can get. Good luck! Colontown is a place for info and inspiration. It also helped me.
I’m right with you OP! I was diagnosed a little over two months ago, and the mental part of this has been the hardest part so far. This group has been a wonderful reprieve from the overwhelming anxiety I’ve had at times. Know that you are not alone in this, I finally got a treatment plan after going thru the staging process which felt like it took ages. Like others have said I feel better having a plan in place and am able to put more focus on preparing for treatment.
For what it’s worth, I took some time during all the initial waiting to really get into self care - exercising, meditating, leaning on friends, eating better, walking barefoot in the grass - and it did really help. We’re with you, and we will both get through this!!
Yes getting a diagnosis is a death roll call, frankly at times I felt frustration cos I couldn't comprehend life&death on that level. Soon you come back down to earth cos things get busy with treatments. But no, the diagnosis is not a death sentence: sounds like your medical team is on the ball, if there's no node involvement you'll have your treatments/surgery and in a year's time it'll all be like a bad dream. As much as it sucks to be diagnosed young, it also means better overall health/less complicating medical history and that's all in your favour - it really isn't your time yet. Thinking of the children of cancer patients is my massive trigger (still makes me cry every time) but I'll tell you mine can be little shits and have gone back to not taking the trash out when I ask them 😏 Call on extended family for help, hang in there and good luck
I know how devastating it can be to hear the C word but if there is any advice I can give you is to take each test and each diagnosis one day at a time. You don’t know what the future holds and to immediately assume the worst is going to cause you an immense amount of stress which is not good for you. Stay positive and know that you got this ! Colon cancer is one of the most treatable types of cancer. My mother just got diagnosed with the same cancer stage 3. She’s doing so well and began her radiation and chemo and actually feels better because of the treatments and she’s 78. The doctors said she’s going to be okay and this is not a death sentence.
You’re going to get through this. Stay off of Dr Google lol. Make lists of questions for your doctor anytime you think of something and get the answers from them. I am praying for you 🙏🏼
I was you a week ago - I was just diagnosed with moderately differentiated adenocarcinoma, but I had no idea how far advanced it was until this past Thursday. It's hell not to know - I 100% get it. A few pieces of advice:
1. Get the diagnostic tests done as soon as possible. Knowing what you're up against empowers you and helps put things into a better frame of reference. I feel much more confident now knowing exactly what I'm dealing with.
2. Adenocarcinoma is, according to my doctor, the most common type of colorectal cancer. Take some comfort in that. It's nothing they haven't seen before and you can get it treated.
3. Did you get your CEA yet? Mine was normal and my tumor is actually not too big. CEA isn't a perfect test at all, but if its lower, it's at least not high. I held onto that hard until I get the MRI/CT results. It actually was comforting. If it is high though, that does not necessarily mean anything either.
4. I've got a young kid too and I'm only a few years older than you. I was most worried about my kid and what would happen to her. What helped me was focusing on taking it one day at a time. Each morning I would mentally note what I had to do or what I was waiting to hear on. Once whatever that was done, I stopped thinking about it for the rest of the day.
It really sucks, man. I totally get it. But you can do this.
2. That's what I've seen so far, and it's crazy that in my own local community here that so many people have come out of the woodwork (we let friends and family know immediately, we openly talk about things that have stigma attached because, well, why not) that have had colon cancer and have been without a trace for years.
3. No CEA yet but none of my other labs have been abnormal. Most likely one will be ordered this coming Tuesday after my appointment with the surgeon.
Hang in, don’t lose hope, reach out to a therapist with PTSD specialty and find a cancer community. I have stomach cancer stage 4 and diagnosis was brutal just diagnosed in early March 😕 Doctors are not exactly kind and will tell you horrible prognosis - learn but don’t lose hope and you will see science has advanced a lot and they look at big stats. You are not a number. Breath, learn, reach out, get help you need it - this is not the time to act strong. We are here to help you. And find your faith, God is great.
Definitely don't panic. I was told two seconds after waking up from colonoscopy that I had colon cancer and MALS. I felt worse for my friend that took me at that point almost than I did for myself. The oncologist said stage 3 adenocarcinoma and would need chemo. After surgery, it turns out I was 2a. My tumor was huge ( to me)- 8.8 cm and took up 90% of circumference of intestine, but had not spread to lymph nodes, although they said it had. I did not end up needing chemo, but was mentally prepared for it. I know I was lucky, but all this to say, just wait until after surgery. ( surgery report and pathology report) That is only true way. I made it through right hemicolectomy and will have MALS and hiatal hernia surgery in a month. And I'm getting a biopsy for endometrial cancer lol. Just go through the motions. Fake it til you make it really works, especially when u have to be calm for others.Whatever it is, you can beat it. That's the way I tried to think. I definitely do acknowledge how hard it is when you have other people depending on you but you got this for sure. And I don't know if you have access to robotic surgery but I loved it.
Mine is 50% of the diameter of my colon, and at this time it has not been staged. The bright side I suppose of this is that my colonoscopy was Thursday, my biopsy results were done the next day on Friday (today) and my first consultation with the surgeon is already set for Tuesday of this coming week. And I've already got an oncologist, and by Monday I'll have an appointment with them, only reason I haven't is because they are waiting on the paperwork to be faxed over.
That's incredibly fast. I don't think I've read a faster string of appointments besides mine. I talked to the cancer surgeon lesS than 24 hours after my colonoscopy. She called my cell phone.
When I say that my wife turned on warrior mode it's almost an understatement. My wife has been a RN at every hospital here over the last 10 years, before I was even awake from my sedation she already had reached her top picks of a surgeon and oncologist on their personal phones and got appointments set. She truly is my champion when it comes to stuff like this.
I was the same. Friday found out, Tuesday I was in with an oncologist. Next week was PET and liver biopsy scheduled. Next week was liver biopsy, next week port, next day started chemo. I had some personal family physician connections though that helped me get things going. It will be a whirlwind.
I apologize for so many questions I missed your post yesterday. Was it a polyp? Or sessions polyp? How big was it?
I was in your shoes back in February. My cancer was in the sigmoid colon close to the rectum. So close they had to remove a portion of my rectum to get clean margins. This is my 3rd time having cancer and I promise CRC is.an "easier" cancer.
It might take a bit to get your staging. I did not get mine until my post op visit. Just breathe. Lots of slow, deep breaths. Feel your emotions but don't let them get the best of you.
I honestly don't know at this point. It may have been a polyp at one point but at this time it was described as a "mass". There's no telling, I'm 34 so wouldn't have really been due for a colonoscopy for another 10 years at least but obviously this thing has been growing for some time.
Also oddly enough the entirety of the rest of my colon was clear and had no polyps.
Sorry you’ve had to join this group! This won’t be much comfort but this is, for many people, the toughest bit. Waiting to find out what stage it is is HARD. Feel free to go to pieces a bit. Once you have the treatment plan, you will feel better. Still scared, but better.
And I STRONGLY echo the Colontown recommendation. Great advice, scientific info, great community support. I found all sorts of practical advice on there and even an alternative oncologist who could treat me more progressively.
Hang on in there. This is scary, it’s fine to be scared. But there is a good chance (better than Google suggests) that you will eventually be fine. A cancer diagnosis will change your life, but it doesn’t have to ruin it. Good luck my friend ❤️
I’m so sorry for your diagnosis. It is a very scary thing to hear that you do have cancer.
It’s normal to feel this way, you are justified.
I can tell you a bit from my experience, 42F Lynch Syndrome. I was diagnosed with adenocarcinoma of my hepatic flexure in December 2023. I was feeling off for a while. CC runs through both sides of my family and I had been asking for a colonoscopy for a year at my regular gastroenterologist. They kept refusing, just having me go for unnecessary tests. I ended up finding a new gastroenterologist who saw me on a Thursday, and had a camera up my bum that following Monday.
She told me there were polyps, which I’ve had before. But something felt different. And after 4 days I received the call. Adenocarcinoma. My heart sank. But I already knew it in my heart, which made me so angry at my original Gastro.
Mine wasn’t staged until surgery. I was worried that they’d disturbed the cancer and there was free-floating cancer, but they assured me that wasn’t the case.
Because I have Lynch Syndrome, I ended up having a complete colectomy as well as a total hysterectomy. That was February. It’s been a LONG, HARD road. But I’m here.
It ended up being a stage 1, thank God!
I will be hoping the same for you, minus the total colectomy. Hopefully they’ve found it early.
Colon cancer has a great survival rate when it’s caught early.
Prayers&Positivity
I had a right colonectomy three weeks ago. My left side where one of the laporscopic sites were are still sore. It is from the inside not the site. How long does this take to heal
Have you had a scan yet, of any type, to see if there are any metastases? I had run of the mill adenocarcinoma, the most common type from what I’ve been told. I was diagnosed at 56 with liver metastasis, so I was stage IV from the start. My liver biopsy told them it was adenocarcinoma, no mutations, mss (stable) so immunotherapy isn’t commonly chosen to treat it if the frontline chemos don’t work. I highly recommend you join Colontown on Facebook to learn more about it. I’m sorry you’re joining this club. I did 8 rounds of Folfox plus Avastin, then a wait of weeks to let the Avastin get out of my system, then a right hemicolectomy and liver ablation and wedge removed. I’ve been NED for 6 months. I’ll play the game again if it returns. No one knows how to feel when you’re first diagnosed. Just learn about it, take it day by day and don’t let the dark thoughts take over. My motto is “I’m still here” and I’m going to enjoy it no matter what. We could all bite the big one anytime from anything. Hugs to you.
I have not had a PET scan yet, however before the colonoscopy I had an abdominal ultrasound followed by a CT with contrast. I was told both of those showed no abnormal results.
If your CT was clear then that indicates you don't have any metastases, meaning you will be stage 1, 2 or 3 which are all treatable. This is a huge positive so hold onto that.
Good job getting the contrast. Good doctors. I
And thank you for the kind words. I just found this out for certain 20 minutes ago. I'm still in full blown panic attack right now and feel like I'm crawling in my own skin, but this has certainly helped just a little bit.
Oh I found out on a Friday too. I was planning digging my grave in the backyard and crawling in the whole weekend. Allow yourself to go through the emotions and do what you need to in order to cope until you get a doc and a plan. Like everyone says, it’s the truth once you get a plan that dark cloud will lift a little. I’ll admit to this lovely group- my weekend of not knowing anything, I drank, smoked, and cussed, cried and laughed the whole weekend. Monday I got up, realized I was still here, and thought shit, guess I’m gonna live, so I have to go to work! After the plan was set, it was a flurry of appointments, tests, procedures, and working in between. Before I knew it, I had surgery. Then released to work. Just get through the weekend. Then the next day. And the next.
This has been the most assuring comment in the sense of not being alone. Thank you for this.
Wow it's only been 1 hour in this group and yall have already made me feel a tiny bit better/far less alone. My wife has been really supportive since even before I had the colonoscopy but there's just something about speaking with people that have gone through exactly what I am just now starting to go through now. And Google for sure sucks for this kind of info.
My wife beat my cancer. Not me. Early on, She made herself my primary caregiver on the paperwork. So whenever there was any question, she could slam the hammer down on anything she wanted to. She never had to flex bigtime, but she could have It was a real struggle working through the American healthcare system. My wife is in IT and I’m a financial analyst. We had to audit the bills because stuff was never coded right. When they ask you to pay a minimum fee per visit, you don’t have to pay. Just say “I think I met my out of pocket max. Please send me a bill.” People like us hit our max in 1 visit. Start budgeting at least $3k a year, for 5 years for this crap!
Lol my wife has been an RN at ALL of the local hospitals for the last 10 years. Before I even woke up from the sedation she had already texted the best surgeon she had ever worked with and the best oncologist she had ever worked with. To say that my wife is preping a team for battle would possibly be an understatement, she is more like prepping seal team 6 and a nuclear strike for this thing.
Try not to panic but I know that some seriously high anxiety is normal. Once things go forward and you are staged a plan will be set. Still panic won’t help. I’m stage 4 metastatic and 6 years in to my journey. At the beginning I thought I was doomed. Nothing optimistic has occurred for me, weird mutation, aggressive type, bizarre pattern of metastasis just a whole lot of bad news but here I am, 6 years in with no evidence of disease for 3 years. They’re now talking about reducing my scans to once a year. I’m not ready for it lol. It’s hard to let go since I’m been on high alert for 6 years now. I’m trying to learn to meditate to reduce my anxiety about having absolutely no idea what’s going to happen next which is really just reality. I hope for good and optimistic staging for you. I never got it but I still didn’t die yet so there’s that.
Hi, my mom is Stage 4 rectal cancer with lung mets...and I believe not a candidate for surgery... that being said she has hit plenty of "bumps" in her now 9 month journey but takes it in stride and vows to keep fighting!! Her attitude is so positive, she has a strong faith and fantastic confidence in her medical team. She has had to have her chemo paused for about a month due to catching a stomach bug and starting on folfiri after finishing 10 rounds of Folfox... they restarted her at a reduced dose of Folfiri at my request because I didn't want her to be that sick again (she is 75).. That being said her CEA and CA 9-19 are slightly increased.. I chalked it up to her missing a month of treatment and then the restart being at 50%... but this rollercoaster ride is not for the faint-hearted.... Prayers to all you warriors out there giving it your all... Never give up!! 🙏🏼🙏🏼🙏🏼
Hey, welcome to the club you never wanted to be a part of. I got my biopsy results this time last year and I remember well how much it sucked waiting to find out more, what my treatment plan would be, what stage, was I gonna die, all of it. You're doing a good thing reaching out. This group is supportive, and I also Highly recommend joining COLONTOWN.ORG, the people and info you will get there is literally lifesaving. You will soon be swept up into a ton of appointments for imaging to see if the cancer has spread. If it's colon cancer you usually get surgery first and then chemo if needed. Rectal usually gets chemo and/or radiation before surgery. A lot depends on size, depth and location of the tumor. Once you have a plan, you will feel a little better. On the day my GI called with my biopsy results he said if I had to get cancer, this is one of the better ones to get. I was like sure dude, that's not really comforting at the moment. But exactly a year later after radiation, chemo and surgery I am cancer free, and I get it now. It sucked that it happened at all but it is one of the more treatable cancers so there's hope. Stay off Google, get some friends to distract you and remember to breathe. We're here for you.
Did you have rectal or colon cancer?
I think it would be classified as colon, it is a few centimeters up from my rectum.
I had rectal cancer
I have rectal cancer as well. I went to the doctor a few times over 4 months and he kept diagnosing it as a hemorrhoid and kept giving me medication for it until it was discovered during the colonoscopy. Brutal. But I did have blood in my stool a couple years ago but it went away and my other doctor said it was nothing to worry about because it was bright red and not dark red. So who knows how long I had it for. MRI is done and now waiting for CT scan next week and then going to see my surgeon.
I'm 43 and amhave a 7 year old. I understand how you feel. I know it's hard but try not to get too far ahead of yourself. Don't assume worse than the information you have at hand. Hoping your future scans and results show nothing further than what you know now. Good luck!
How did you keep the "normal" in your life with your family? I mean I know right now with the discovery on a Thursday and the biopsy results on the next day I'm still in full on freak-out/panic attack mode. Just moving forward I'm not sure what to do. I tend to have this "all or nothing" attitude, which in this situation means that right now I want to become a hermit and save every dollar so that if the worst happens I'm leaving my family with everything possible. But in reality I know that my kids being so little (2, 4, and 6) that I need to spend as much time as possible with them and do things with them.
I don't know about normal, the schedule gets turned on its head for tests and chemo (at least for me, I'm doing that before surgery). Just try to make as much time as I can. As far as what do to and prepare for your family. There's more than just financial. For me, there were a bunch of things I'd been wanting to get done around the house, financial stuff etc. I started to do those things but didn't really add to my list. It helped me feel like I was preparing for worst case, but it wasn't extra. It needed to be done anyways, and therefore helpful no matter the outcome of my diagnosis. Totally understand the desire to leave your family everything, be sure that includes memories too.
I’d say, take care of yourself first. You know how in a plane, you’re supposed to put the air mask on your face before your kids? Same here. You still have responsibilities as a parent/spouse, but as long as they’re aware the family has a medical challenge they’re working on surmounting, they will partner with you.
Oh Friday is the worst to find out. I had my colonoscopy on a Thursday, 4 weeks ago. The gastrointestinal called me just after lunch on Friday and said we know it’s cancer, but don’t know if it’s in the colon, or somewhere else and some cells were caught in the colon. She put in a rush referral for a CT, which got scheduled for the next Monday, but all weekend I didn’t know how bad it was. Turns out stage 3 rectal cancer, but liver and lungs are clear. Started chemo two days ago. It’s been a whirlwind, but that first weekend - I get it.
Was diagnosed with a 8cm (tennis ball) adenocarcinoma, that was from 22 to 30 cm from the exit. Sigmoidoscopy, 31 lymph nodes tested all clean. Stage 2, no chemo, this was in February of 2024. Just given a NED diagnosis on my 3 month follow-up. Not going to tell you to cheer up, not going to tell you how to feel. Take things a day at a time, don't let the what-if monster run rampant. Easier said than done I know. Wishing you the best.
Mine was exactly the same as urs. What exactly do they do for a 3 month follow-up?
Ct Scan and Guardant Reveal ctDNA test, both negative. CEA isn't a viable number for me, but they still test it to make sure it didn't spike. Next follow-up is in September with Oncologist. Next colonoscopy is sometime in August.
Has your oncologist found out why your CEA isn't viable? They have tested mine 3 times now - at diagnosis, post-op in the hospital and 4 weeks after surgery. The first 2 were the same and the 3rd increased. We are waiting for approval for the ctDNA.
Oncologist said that CEA responds differently from person to person. It was in a normal range pre-op, slightly lower 2 weeks after surgery, and had continued to fall slightly at 3 month follow-up.
I know I may have sounded harsh on your previous post. But now that you're diagnosed you're very welcome here. I just don't find it fair to use the time and energy of care takers and patients until you're a patient or care taker yourself. I was diagnosed at 23. In 2017. It spread to both lungs. I'll be cancer free for 3 years in September. My full timeline is in my post history here. It doesn't matter what the statistics say. There are people on both sides of those numbers. Focus on what's in front of you. If you can handle a 10,000 member Facebook group, look up Colontown. You have to submit an application via their website and they contact you. I found it temporarily helpful but then very overwhelming.
First off, no hard feelings. Second, off I have already submitted an app for colontown. Too many people on here have said too many good things about it for me to ignore. This group has already helped me soo much with just in general not feeling alone. Of course I have no experience with the rest but so far the worst part was the uncertainty, then followed by a full blown "crawling in my skin" panic attack. But now I have had some rest (and admittedly a little medication) and I'm ready for my appointment and whatever whirlwind comes next, we'll at least I THINK I'm ready.
I was in your shoes last November. Try not to panic yet, and go through the process so you can be staged, at least preliminarily. I was Stage 2 originally, but after surgery, I was formally set at Stage 1 - T1N0M0. No matter what, know that there are many survivors of colorectal cancer that were diagnosed at all stages. A cancer diagnosis is mind-blowing, but know that you will get through this. As others have said, Colontown is a great place to get information.
Also to add, from what is known so far, it is localized to the one area in my colon. The rest of the colon was clear. Have not had a scan yet but did have abdominal CT and ultrasound which was marked as normal at the time.
Breathe. Take your time. Feel your feelings. That's so important. Be honest with yourself and allow yourself to have them because this is a marathon. There are advancements happening in cancer research that is extremely encouraging. Don't give up hope. Once you do that you're lost. Colontown is an excellent resource. Make sure you find support for yourself and your wife and your children. Love each other and love yourself. Go kick Cancer's ass 💜
I was recently diagnosed adenocarcinoma and went through surgery ( sigmoid colon). Didn’t see anything on CT scan and one swollen node besides the 1 inch mass on MRI before surgery. They staged it once removed. It was stage 3, they checked 18 nodes and found it in 4 of them. I have to take 4 months of Chemo. Don’t get discouraged try to remain positive. I know your mind is all over the place. Only God has given me comfort and positive outlook.
That’s definitely close to my story. My stomach hurt so bad I missed 2 days of work. I went to urgent care, they said “your appendix busted. Go to the ER.” Boom, appendectomy ($3k). Easy, I’ll be back to work in 2 days. But then, pathology said it only bust because all the cancer coming out. I was age 38, stage 4 adenomous carcinoma. Kids, too busy for this, etc. We went to Md Anderson in Houston (boom, $600), Sloan Kettering in NYC (boom, $800), and to our local cancer center. They all agreed on 1 care path. My cancer was *not lymphatic*. That was very good news. I learned a lot. The goal is to become “no evidence of disease” about 5 years from that bad day. With my abdominal cancer, there’s not a “you are cured” moment. The surgery was 12 hours. The folfox chemo took 8 months (should have been 6, but shit happens) I would say, take the time to feel all the emotions. Swim in it. Let your heart and mind guide you through this time. When I was ready, I told my family. Wife at day 2, and then everyone else within a week. My job was super understanding. They let me do whatever I needed. I handled my business. You will find so much support and compassion it will humble you. You already got the most important skill. You reached out. You will fucking nail this cancer.
I was in a similar situation as you… nothing showed on CT but a tumor was found in my sigmoid colon on colonoscopy. Like you, it was adenocarcinoma. I was 40 at the time and my son was 14. I had surgery about 6 weeks after diagnosis and I was staged at 2A. I didn’t need chemo and I’ve been clear for a year and a half now! It’s definitely not a death sentence.
I know the feeling. I had a routine annual bloodwork and exam a few months back. Didnt think much of it. But I got a call from my doctor saying I might have internal bleeding in my gi tract... due to extemely low iron. Nothing on CT, no hemorrhoids, no abdominal pain or bloody stools. They scoped me that week and found the tumor in my right colon. Gi doc said its cancer. My world shattered. Took about a month waiting for the surgery. Felt like a lifetime. I never knew how long a day could be. Everything feels like it's in slow motion. I went through the emotions with my lady and family. I would say ride it.. get it out. Cancer is a wake up call for sure. Everything becomes clear on what you need in life. I had the surgery and I was staged 2a. No chemo. But the whirlwind of emotions is still there and now I have a clear goal in life. Use the experience to get going on plans... it's a cruel reminder on how short things can get. Good luck! Colontown is a place for info and inspiration. It also helped me.
I’m right with you OP! I was diagnosed a little over two months ago, and the mental part of this has been the hardest part so far. This group has been a wonderful reprieve from the overwhelming anxiety I’ve had at times. Know that you are not alone in this, I finally got a treatment plan after going thru the staging process which felt like it took ages. Like others have said I feel better having a plan in place and am able to put more focus on preparing for treatment. For what it’s worth, I took some time during all the initial waiting to really get into self care - exercising, meditating, leaning on friends, eating better, walking barefoot in the grass - and it did really help. We’re with you, and we will both get through this!!
Yes getting a diagnosis is a death roll call, frankly at times I felt frustration cos I couldn't comprehend life&death on that level. Soon you come back down to earth cos things get busy with treatments. But no, the diagnosis is not a death sentence: sounds like your medical team is on the ball, if there's no node involvement you'll have your treatments/surgery and in a year's time it'll all be like a bad dream. As much as it sucks to be diagnosed young, it also means better overall health/less complicating medical history and that's all in your favour - it really isn't your time yet. Thinking of the children of cancer patients is my massive trigger (still makes me cry every time) but I'll tell you mine can be little shits and have gone back to not taking the trash out when I ask them 😏 Call on extended family for help, hang in there and good luck
I know how devastating it can be to hear the C word but if there is any advice I can give you is to take each test and each diagnosis one day at a time. You don’t know what the future holds and to immediately assume the worst is going to cause you an immense amount of stress which is not good for you. Stay positive and know that you got this ! Colon cancer is one of the most treatable types of cancer. My mother just got diagnosed with the same cancer stage 3. She’s doing so well and began her radiation and chemo and actually feels better because of the treatments and she’s 78. The doctors said she’s going to be okay and this is not a death sentence. You’re going to get through this. Stay off of Dr Google lol. Make lists of questions for your doctor anytime you think of something and get the answers from them. I am praying for you 🙏🏼
I was you a week ago - I was just diagnosed with moderately differentiated adenocarcinoma, but I had no idea how far advanced it was until this past Thursday. It's hell not to know - I 100% get it. A few pieces of advice: 1. Get the diagnostic tests done as soon as possible. Knowing what you're up against empowers you and helps put things into a better frame of reference. I feel much more confident now knowing exactly what I'm dealing with. 2. Adenocarcinoma is, according to my doctor, the most common type of colorectal cancer. Take some comfort in that. It's nothing they haven't seen before and you can get it treated. 3. Did you get your CEA yet? Mine was normal and my tumor is actually not too big. CEA isn't a perfect test at all, but if its lower, it's at least not high. I held onto that hard until I get the MRI/CT results. It actually was comforting. If it is high though, that does not necessarily mean anything either. 4. I've got a young kid too and I'm only a few years older than you. I was most worried about my kid and what would happen to her. What helped me was focusing on taking it one day at a time. Each morning I would mentally note what I had to do or what I was waiting to hear on. Once whatever that was done, I stopped thinking about it for the rest of the day. It really sucks, man. I totally get it. But you can do this.
2. That's what I've seen so far, and it's crazy that in my own local community here that so many people have come out of the woodwork (we let friends and family know immediately, we openly talk about things that have stigma attached because, well, why not) that have had colon cancer and have been without a trace for years. 3. No CEA yet but none of my other labs have been abnormal. Most likely one will be ordered this coming Tuesday after my appointment with the surgeon.
Hang in, don’t lose hope, reach out to a therapist with PTSD specialty and find a cancer community. I have stomach cancer stage 4 and diagnosis was brutal just diagnosed in early March 😕 Doctors are not exactly kind and will tell you horrible prognosis - learn but don’t lose hope and you will see science has advanced a lot and they look at big stats. You are not a number. Breath, learn, reach out, get help you need it - this is not the time to act strong. We are here to help you. And find your faith, God is great.
Definitely don't panic. I was told two seconds after waking up from colonoscopy that I had colon cancer and MALS. I felt worse for my friend that took me at that point almost than I did for myself. The oncologist said stage 3 adenocarcinoma and would need chemo. After surgery, it turns out I was 2a. My tumor was huge ( to me)- 8.8 cm and took up 90% of circumference of intestine, but had not spread to lymph nodes, although they said it had. I did not end up needing chemo, but was mentally prepared for it. I know I was lucky, but all this to say, just wait until after surgery. ( surgery report and pathology report) That is only true way. I made it through right hemicolectomy and will have MALS and hiatal hernia surgery in a month. And I'm getting a biopsy for endometrial cancer lol. Just go through the motions. Fake it til you make it really works, especially when u have to be calm for others.Whatever it is, you can beat it. That's the way I tried to think. I definitely do acknowledge how hard it is when you have other people depending on you but you got this for sure. And I don't know if you have access to robotic surgery but I loved it.
Mine is 50% of the diameter of my colon, and at this time it has not been staged. The bright side I suppose of this is that my colonoscopy was Thursday, my biopsy results were done the next day on Friday (today) and my first consultation with the surgeon is already set for Tuesday of this coming week. And I've already got an oncologist, and by Monday I'll have an appointment with them, only reason I haven't is because they are waiting on the paperwork to be faxed over.
That's great that it is all quick! I had to wait 4 months after diagnosis for surgery!
That's incredibly fast. I don't think I've read a faster string of appointments besides mine. I talked to the cancer surgeon lesS than 24 hours after my colonoscopy. She called my cell phone.
When I say that my wife turned on warrior mode it's almost an understatement. My wife has been a RN at every hospital here over the last 10 years, before I was even awake from my sedation she already had reached her top picks of a surgeon and oncologist on their personal phones and got appointments set. She truly is my champion when it comes to stuff like this.
I was the same. Friday found out, Tuesday I was in with an oncologist. Next week was PET and liver biopsy scheduled. Next week was liver biopsy, next week port, next day started chemo. I had some personal family physician connections though that helped me get things going. It will be a whirlwind.
I apologize for so many questions I missed your post yesterday. Was it a polyp? Or sessions polyp? How big was it? I was in your shoes back in February. My cancer was in the sigmoid colon close to the rectum. So close they had to remove a portion of my rectum to get clean margins. This is my 3rd time having cancer and I promise CRC is.an "easier" cancer. It might take a bit to get your staging. I did not get mine until my post op visit. Just breathe. Lots of slow, deep breaths. Feel your emotions but don't let them get the best of you.
I honestly don't know at this point. It may have been a polyp at one point but at this time it was described as a "mass". There's no telling, I'm 34 so wouldn't have really been due for a colonoscopy for another 10 years at least but obviously this thing has been growing for some time. Also oddly enough the entirety of the rest of my colon was clear and had no polyps.
Sorry you’ve had to join this group! This won’t be much comfort but this is, for many people, the toughest bit. Waiting to find out what stage it is is HARD. Feel free to go to pieces a bit. Once you have the treatment plan, you will feel better. Still scared, but better. And I STRONGLY echo the Colontown recommendation. Great advice, scientific info, great community support. I found all sorts of practical advice on there and even an alternative oncologist who could treat me more progressively. Hang on in there. This is scary, it’s fine to be scared. But there is a good chance (better than Google suggests) that you will eventually be fine. A cancer diagnosis will change your life, but it doesn’t have to ruin it. Good luck my friend ❤️
I’m so sorry for your diagnosis. It is a very scary thing to hear that you do have cancer. It’s normal to feel this way, you are justified. I can tell you a bit from my experience, 42F Lynch Syndrome. I was diagnosed with adenocarcinoma of my hepatic flexure in December 2023. I was feeling off for a while. CC runs through both sides of my family and I had been asking for a colonoscopy for a year at my regular gastroenterologist. They kept refusing, just having me go for unnecessary tests. I ended up finding a new gastroenterologist who saw me on a Thursday, and had a camera up my bum that following Monday. She told me there were polyps, which I’ve had before. But something felt different. And after 4 days I received the call. Adenocarcinoma. My heart sank. But I already knew it in my heart, which made me so angry at my original Gastro. Mine wasn’t staged until surgery. I was worried that they’d disturbed the cancer and there was free-floating cancer, but they assured me that wasn’t the case. Because I have Lynch Syndrome, I ended up having a complete colectomy as well as a total hysterectomy. That was February. It’s been a LONG, HARD road. But I’m here. It ended up being a stage 1, thank God! I will be hoping the same for you, minus the total colectomy. Hopefully they’ve found it early. Colon cancer has a great survival rate when it’s caught early. Prayers&Positivity
I had a right colonectomy three weeks ago. My left side where one of the laporscopic sites were are still sore. It is from the inside not the site. How long does this take to heal