Living with colorectal cancer - Meet others & come say hi

Welcome to the Colorectal Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with colorectal cancer or caring for someone with colorectal cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

Dear @Ikissinger, I am so sorry to hear about your father. I keep on praying for your father and please keep positive and follow up with necessary arrangement with hospice. I would also suggest to discuss with the doctors that how they can make this lemon sized tumors to be shrunken if they are inoperable. Please find out ways. There is always a way if there is a will. I will keep you and your father in my prayers. Soul

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@soul

Dear @Ikissinger, I am so sorry to hear about your father. I keep on praying for your father and please keep positive and follow up with necessary arrangement with hospice. I would also suggest to discuss with the doctors that how they can make this lemon sized tumors to be shrunken if they are inoperable. Please find out ways. There is always a way if there is a will. I will keep you and your father in my prayers. Soul

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💋thanks

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Yes. Thankfully my brothers wife does hospice care so navigating should be a little easier on us. 💋

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@starrlight

@mouselife.

So sorry to hear that you are having pain however believe that it will subside as you heal. I have not gone that far in my search for the rectal canc. that is in my body, they wanted me to get the bag and i said no, and was also told by two dr’s i would not be able to survive that so i am trying to get in Mayo Climic.

i had radiation treatment two yrs. ago on the rect tumor two yrs. ago and received a third degree burn, which finally healed and left a scar inside. I guess our body can take a lot and hopefully will bring us through, i know that prayer is so essential in all of this and anything else we come across. i will pray for you and know that it will be heard.

May you find peace and healing in your body and mind.

Starrlight

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Hi im james. I had colon cancer 10 yrs br4 i would do anything about it cause i did not want a bag on me. Worst mistake could have made. I was loosing so much blood and food was going straight through me was weigh less than 100 lbs my red blood cell count went so low i couldnt stay awake and would sleep 18 hrs a day. My dad came by and took me to hospital. With in one yr with no insurance or anything had all my intestines taking out. Im 48 yr old did heating ac refrigeration work over 30 yrs all i know how to do.after all the testing and taking blood mris and all other test ever 2 days all over la. They told me would be a 6 hr surgery. Would only have bag on me a few months. Was over 12 hrs long. Didnt wake up tell day later. Said i would be walking in two days. Was 2 wks. Was in hospital almost 2 month and left with stitches and staples in my rear.felt like barb wire. Needless to say im stuck with for life. I now have all my small intestine full of polyps and have to have some cut out ever yr. I applied for disabily 2 yrs ago. Just got aproved.i had to sell everything and more just to survive.been long road for me. Just want a break. Im just getting used to myself
Moved to la. From Texas cause texas would not help or do anything about tell i was dying. And would not give me medicaid. I was buying my ostamy supplies out of pocket i got medicaid finialy and got liberator to start sending me supplies. Has been very long road. I get my ssd settlement money this month. Suppost to have another surgery on 28. I really just thinking on taking a break or vacation ..

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@sockwelljames

Hi im james. I had colon cancer 10 yrs br4 i would do anything about it cause i did not want a bag on me. Worst mistake could have made. I was loosing so much blood and food was going straight through me was weigh less than 100 lbs my red blood cell count went so low i couldnt stay awake and would sleep 18 hrs a day. My dad came by and took me to hospital. With in one yr with no insurance or anything had all my intestines taking out. Im 48 yr old did heating ac refrigeration work over 30 yrs all i know how to do.after all the testing and taking blood mris and all other test ever 2 days all over la. They told me would be a 6 hr surgery. Would only have bag on me a few months. Was over 12 hrs long. Didnt wake up tell day later. Said i would be walking in two days. Was 2 wks. Was in hospital almost 2 month and left with stitches and staples in my rear.felt like barb wire. Needless to say im stuck with for life. I now have all my small intestine full of polyps and have to have some cut out ever yr. I applied for disabily 2 yrs ago. Just got aproved.i had to sell everything and more just to survive.been long road for me. Just want a break. Im just getting used to myself
Moved to la. From Texas cause texas would not help or do anything about tell i was dying. And would not give me medicaid. I was buying my ostamy supplies out of pocket i got medicaid finialy and got liberator to start sending me supplies. Has been very long road. I get my ssd settlement money this month. Suppost to have another surgery on 28. I really just thinking on taking a break or vacation ..

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If you think you have any problems have it checked and dont put off cause of temporary bag. I went through. Depression and have to be on 16 medications now. And so much worse than if would have taking care of.

Liked by michelle74

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@sockwelljames

Hi im james. I had colon cancer 10 yrs br4 i would do anything about it cause i did not want a bag on me. Worst mistake could have made. I was loosing so much blood and food was going straight through me was weigh less than 100 lbs my red blood cell count went so low i couldnt stay awake and would sleep 18 hrs a day. My dad came by and took me to hospital. With in one yr with no insurance or anything had all my intestines taking out. Im 48 yr old did heating ac refrigeration work over 30 yrs all i know how to do.after all the testing and taking blood mris and all other test ever 2 days all over la. They told me would be a 6 hr surgery. Would only have bag on me a few months. Was over 12 hrs long. Didnt wake up tell day later. Said i would be walking in two days. Was 2 wks. Was in hospital almost 2 month and left with stitches and staples in my rear.felt like barb wire. Needless to say im stuck with for life. I now have all my small intestine full of polyps and have to have some cut out ever yr. I applied for disabily 2 yrs ago. Just got aproved.i had to sell everything and more just to survive.been long road for me. Just want a break. Im just getting used to myself
Moved to la. From Texas cause texas would not help or do anything about tell i was dying. And would not give me medicaid. I was buying my ostamy supplies out of pocket i got medicaid finialy and got liberator to start sending me supplies. Has been very long road. I get my ssd settlement money this month. Suppost to have another surgery on 28. I really just thinking on taking a break or vacation ..

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Welcome to Connect, @sockwelljames. I'm grateful that you posted your story to tell others about the importance of getting checked. Colon cancer can be effectively screened, but many are afraid to do it because they fear bad news.

What surgery are you supposed to have on the 28th? Have you discussed taking a break with your surgeon?

Liked by michelle74

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@colleenyoung

Welcome to Connect, @sockwelljames. I'm grateful that you posted your story to tell others about the importance of getting checked. Colon cancer can be effectively screened, but many are afraid to do it because they fear bad news.

What surgery are you supposed to have on the 28th? Have you discussed taking a break with your surgeon?

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No i have not. Now dont have any large intestines. And now have polyps in small intestines. 1000s to be extact. Exery yr have to have some cut out for rest of life they told me. Last one was 2 inches at the y .were pankrus and gallbladder drains to small intestine. Cut it out put stint in pankrus .got pankritus 2 wks later back in hosiptal. But no have not discussed it. .my doctor first came to me crying saying it was too big for her to handle and got me set up with who she said is the best in new orleans. I still love the lady and respect her honesty so much.

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@sockwelljames

No i have not. Now dont have any large intestines. And now have polyps in small intestines. 1000s to be extact. Exery yr have to have some cut out for rest of life they told me. Last one was 2 inches at the y .were pankrus and gallbladder drains to small intestine. Cut it out put stint in pankrus .got pankritus 2 wks later back in hosiptal. But no have not discussed it. .my doctor first came to me crying saying it was too big for her to handle and got me set up with who she said is the best in new orleans. I still love the lady and respect her honesty so much.

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All my family in texas. Done got all my doctors and medicaid and just getting ssd. Too much to change and doc that know me . make it hard to move back. Even though texas would not help me and la did .still texas feels like home

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@travelgirl

Hello everyone I am Travelgirl. I am a Rare & Unusual Cecum Colon Cancer survivor. Cecum cancer accounts for less than 15 to 20% of all colon cancers. So it is pretty rare to get this type of cancer at age 53. I was 53 yrs old getting my first colonoscopy. Don’t wait till your 53 to get your first colonoscopy.

My Cecum cancer showed NO Symptoms Zero.

While traveling somewhere in a third world country I had contacted H-Pylori. The H-Pylori actually saved my life. I was sicker than a dog with Severe Acid reflex. The Acid reflex was so bad, I actually thought I had gotten poisoned. I had a severe burning sensation which started at the back of my throat and burnt all the way down to my stomach. Plus I was having stabbing chest pains. I had my husband take me to the ER. They ran a slew of tests in the ER. Chest and Stomach X-rays, Blood work, Urine test, and an Ultra sound. All the tests came back negative for anything odd. My blood work was perfect. So they determined I had GERD. The ER Dr. said I needed to see a GI specialist ASAP.

Saw a GI Dr 2 days later. Got the 2 for 1 special an Endoscope of my Throat and Stomach and a full Colonoscopy. The Endoscope confirmed the H-Pylori and the Colonoscopy found an Ulcer in my Cecum, with a flat polyp underneath. Plus 3 more noncancerous polyps. The biopsy of the Ulcer came back Pre-Cancerous.

3 weeks later I saw another GI DR, who was going to try and remove the Ulcer with a EMR procedure. Well he couldn’t remove the flat polyp, it wouldn’t lift. My colon was twisted, and I had some Diverticulosis going on, plus he found 3 more polyps. A second biopsy of the cecum ulcer, came back pre-cancerous a second time. This GI Dr. referred me to a surgeon to have a resection.

I decided to contact a 3rd GI DR at the Mayo clinic, to see if the polyp could be removed without surgery. 3 weeks later I get my 3rd Colonoscopy. Well the polyp could not be removed by EMR. He also found 3 more noncancerous polyps. A 3rd Biopsy of the Ulcer came back cancerous. I was referred to a Surgeon.

My Colon-Rectal surgeon ordered a CT scan of my chest, stomach, and Pelvis. The Ct scan found swollen lymph nodes near my Aorta. Which freaked out the Colon Rectal surgeon. He then ordered a Pet Scan and a CT- Guided Biopsy of the Aortic Lymph node. They needed to rule out Metastasis cancer. Well back to the rare and unusual, I got the 2 for 1 Cancer Diagnosis. The swollen Lymph nodes are the result of a Non-Hodgkin’s Lymphatic Cancer Follicular Lymphoma.

My colon surgery was done 2 weeks later. The Dr. removed 1 foot of colon and 20 lymph nodes. It is confirmed I have a stage 1 Adenocarcinoma Cecum Cancer. The surgery was a success. The lymph nodes were clear of colon cancer. However, a few tested for Lymphatic cancer. I was in the hospital for 6 days. It took a little time getting adjusted to the new plumbing in my body. Now it is almost 13 months since my surgery. I feel great, and my body doesn’t miss that section of colon.

The Dr. put me on a Watch and Wait Treatment approach. Every 3 months for blood work Ct scans. Which is now been moved too, every 6 months for blood, and Ct Scans. I need a colonoscopy every 12 months. It has been determined I have turned into a Polyp farmer. So yearly they need to check for polyps.

Colon cancer is far more common than people think and extremely curable. DO NOT delay getting your colonoscopy. You may not be as lucky as me.

( My Lymph nodes have shrunk in size with every CT scan. Which is a excellent sign. I may not need treatments for many years if ever. 1 out of every 3 people with this type of cancer end up getting treatments. I plan on being one of the two who never gets a treatment 🙂 )

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Nice to meet someone who's in a similar boat. I am 44. I was diagnosed with Cecum cancer August 23 2018. My colon resection surgery was on Sept. 5 2018. they removed 18 inches. I was at a stage 2 T3.
so far all tests indicate my surgery was a success. i also have to follow up with blood work every 3 months for my CEA levels, yearly colonoscopy and CT scans for 3 – 5 years. No chemo was needed.
My cancer was found by fluke. it's important to be your own advocate. I originally had a colonoscopy at age 41. I have a dairy allergy and a few other bizarre food allergies which led to some rectal bleeding. as a result of my first colonoscopy, polyps were found in my cecum. Cancer was found at my 3 year follow up.
I feel very fortunate to have this discovered so early.
i'm still dealing with stress from my 5 month journey to date and the fact that my best friend died from colon cancer shortly after my first colonoscopy. i feel so much better post surgery but recently i've been feeling very tired. I'm writing it off as being new to this whole testing process which i find stressful. As I progress through my follow ups and my CEA levels remain low (it was 0.6 in October, 0.9 as of today) i'm certain my mood will improve and the anxiety will go away.
i just wanted to say 'hi'!

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Hi @michelle74, and welcome to Connect.

I’d like to introduce you to @travelgirl who has shared her journey with cecum cancer in many of the discussions in this group. I’m certain she will extend a warm welcome and offer her insights soon.
In the meantime I encourage you to view these videos where Mayo Clinic experts talk screening, prevention, colorectal cancer diagnosis, treatment, and more. https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/tab/colorectal-cancer/

I really admire your positive attitude, and am glad that the diagnosis was made early. You’re coping with a tough diagnosis, and I’m sure anxiety and worry must also be why you are feeling tired.
I’m also tagging @diannechildress @martid @ilene1 @soul @brglight @nannytart @bush @sallyg @starrlight @joannem, who’ve written about CEA levels; you can view their messages in this discussion: https://connect.mayoclinic.org/discussion/cea-levels/

I wish you all success, @michelle74 and look forward to hearing back from you – updates, questions, concerns – the Connect community is here, listening.

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@michelle74 Hi I'm happy you found us here on connect. Cecum cancer is rare. You are so lucky they found your cancer early. It is typically not found till stage 4 and then it's terminal. God bless.
Yes I agree being stressed after being diagnosed. It has taken me personally 3 yes to calm down and try to get back to normal. But I was also diagnosed with follicular lymphoma a blood cancer 1 week later . So my stress got a extra dose of stress.
I call it double trouble.
Interesting you say dairy allergy cause I never liked milk it always bothered my stomach. I had lots of bloating after eating for most of my life..
Did the Dr's ever say what could of caused the cecum cancer?
Also do you have any relatives with Colon cancers?
I had a great uncle die from cecum cancer at the same age I was s diagnosed 54 yrs old.
Did the drs also run a lynch system test on you?
Your CEA levels are good. My run higher than yours. 2.4 is my average.
I like you had a flat polyp in my cecum with a stage 1 cecum cancer. They removed 12 inches of my colon, plus 20 lymph nodes.. I get blood work every 6 months. Plus CT scans every 6 or 12 months depending how my follicular lymphoma is behaving
I go back for my next check up in March.
Thanks again for finding us.
If you want to keep in touch with how your doing would love to share what I can with you.
Jackie

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@travelgirl

@michelle74 Hi I'm happy you found us here on connect. Cecum cancer is rare. You are so lucky they found your cancer early. It is typically not found till stage 4 and then it's terminal. God bless.
Yes I agree being stressed after being diagnosed. It has taken me personally 3 yes to calm down and try to get back to normal. But I was also diagnosed with follicular lymphoma a blood cancer 1 week later . So my stress got a extra dose of stress.
I call it double trouble.
Interesting you say dairy allergy cause I never liked milk it always bothered my stomach. I had lots of bloating after eating for most of my life..
Did the Dr's ever say what could of caused the cecum cancer?
Also do you have any relatives with Colon cancers?
I had a great uncle die from cecum cancer at the same age I was s diagnosed 54 yrs old.
Did the drs also run a lynch system test on you?
Your CEA levels are good. My run higher than yours. 2.4 is my average.
I like you had a flat polyp in my cecum with a stage 1 cecum cancer. They removed 12 inches of my colon, plus 20 lymph nodes.. I get blood work every 6 months. Plus CT scans every 6 or 12 months depending how my follicular lymphoma is behaving
I go back for my next check up in March.
Thanks again for finding us.
If you want to keep in touch with how your doing would love to share what I can with you.
Jackie

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so this will be a longer reply. lol

I believe personally that food allergies contributed to my cancer. I was told it was "environmental". I remember being super constipated my entire life. it wasnt until my kids were born (2007 & 2009) and I saw my daughter going thru the same thing at age 5 that I decided to find out why. my GO is wonderful. she sent me to the immunologist but the problem with allergy testing is you kinda need to know what you're allergic to. I did not. I was tested for the "majors ". I didn't like her response. for instance she said I'm allergic to all bell peppers but I'm not, really it's only green. the immunologists I saw also paints food groups with one big brush. anyway, I then sent my hair follicles to a lab in the UK. based on the report they sent back, I compared the %reaction levels and went with that. this year was far more useful than my allergist's. armed with these results, I went back to confirm. I'm allergic to all the proteins in dairy, egg white, GREEN bell peppers, interestingly I'm also allergic to flax, psyllium husk, oatmeal and barley, millet and a few other grains. and a few other spices that I don't worry about. knowing this i stay away from Metamucil. every single doctor tells you to take that when you're constipated. now I know why I felt like it was killing me.
in the midst of my testing is when I saw my GI guy and he told me i have IBS and (now) diverticulitis. then came my scope with several polyps discovered in my adenum. he removed them then I had my 3 yr follow up only to be diagnosed with cancer.
a fee months after my first colonoscopy I told my dad to get checked out. he'd been very I'll and receiving blood transfusions every few months. cecum cancer. stage 3. but he was 80. he had surgery he refused chemo was given the all clear nearly 3 yrs later (August 23 the same day I was diagnosed)
my father is old school and secretive. his biggest fear is cancer. I had to speak to my aunt. she told me the Dallaire side (my dad's side) all get some form of organ cancer.
I then saw a genetics counsellor (I live in Canada otherwise I'd never be able to afford any of this, these are all included in our provincial health care plans). yes i wasbtested for Lynch (all tumors in Canada are automatically tested for that) . i dont have it.
the "family" history, at best, is a trend according to them. where I live there is a higher rate of colon cancer.
it's interesting because my dad's cousin (genetically, they are siblings) has celiac which led to colon cancer. this is why early on I thought I had celiac and switched to a gluten free diet which helped alot and why I went did allergy testing to begin with. my doctor still want me to eat GF but i simply avoid all those grains.2 au
all this knowledge I now have helps my kids. actually I have just yanked hair out of both the kids and I'm sending it to the lab Monday. their allergy appointments are on March 11. I'd like to at least solve some bowel issues before they need to be removed from them.
in my "line" I'm the only one with any kind of cancer. my cousins have all been checked as has my sister and everyone's clear.
I joined thus group because I put up a wall when I was diagnosed, I dealt with everyone else's emotions…people visiting and just sitting on my sofa crying. crying. I am the strong positive person everyone wants in their life. nothing gets me down. my husband took 2 weeks off work to … freak out when I was diagnosed, I did not. I went to work. every day. i didn't know how to deal with the diagnosis so… I compartmentalize. for me, knowing i had/have cancer is easy. not knowing [for another 2.5 yrs] if i STILL have it is the most difficult thing for me. this week, my walls have crumbled and I need to repack my emotions and move on. i am glad that the stress and anxiety are normal. i thought there was somethung wrong with me. yes, i see the irony in that statement.
have a great day and thank you for reading, listening.

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@kanaazpereira

Hi @michelle74, and welcome to Connect.

I’d like to introduce you to @travelgirl who has shared her journey with cecum cancer in many of the discussions in this group. I’m certain she will extend a warm welcome and offer her insights soon.
In the meantime I encourage you to view these videos where Mayo Clinic experts talk screening, prevention, colorectal cancer diagnosis, treatment, and more. https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/tab/colorectal-cancer/

I really admire your positive attitude, and am glad that the diagnosis was made early. You’re coping with a tough diagnosis, and I’m sure anxiety and worry must also be why you are feeling tired.
I’m also tagging @diannechildress @martid @ilene1 @soul @brglight @nannytart @bush @sallyg @starrlight @joannem, who’ve written about CEA levels; you can view their messages in this discussion: https://connect.mayoclinic.org/discussion/cea-levels/

I wish you all success, @michelle74 and look forward to hearing back from you – updates, questions, concerns – the Connect community is here, listening.

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thank you. I appreciate your reply. it's helpful to know my feelings are normal. as silly as that sounds. I'm not a patient person and I definitely don't handle the unknown well. I'm the kid who searched the house high and low, unwrapped all the presents and rewrapped them at Christmas. hahahaha

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@michelle74 To help with my stress I started going to the gym. Which i have taken off from doing the last 2 months UGH.. I need to get dressed right now and go.
Now is the Livestrong program offered in Canada? They offer a lot things for people with or who have had cancer. Like 12 weeks free exercise course with special cancer trained exercise Trainers. That really helped me last year..

That really helped rebuild my confidence and lowered my stress.

Here is there website..
https://www.livestrong.org/
Now everything I have read typically cecum cancer, is normally found in people in their 70 and 80's .

I never been tested for allergies but my kids have. My youngest son had problems with constipation as a child. But I was bad when I was young raising kids. The only time I would see the Dr is when I was put on a gurney. I despise going to the dr with a deep and utter passion. So I never went for anything. Now I took my kids all the time to see Dr's.. LOL.. But I seldom went. My kids were always sick so taking care of them more than I could handle at time. Between allergies, learning disabilities, broken bones, lacerated livers and numerous wipe outs on their bikes. There was no time for me.
Plus I ran my own store front company and took care of my Mom and Grandma.. Well let's just say my Stress had stress and that stress had stress and that stress had stress.

I was told a huge contributing factor in both my cancers was the combination of stress and something in my environment. I do not have lynch syndrome either.

Even with my Mom dying at 59 from Endometriosis cancer and one my Grandfather's from bladder cancer and the other from liver cancer.
Cancer does run in my family. But not that they can find as genetic mutation.

I think you are just going to be fine and don't have to worry I am just over 3 yrs and feel great.. Now if I could just loose the 15 pounds I gained through all of this stressing , I will be back to my old self. 🙂
Keep in touch..
Jackie

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@michelle74

thank you. I appreciate your reply. it's helpful to know my feelings are normal. as silly as that sounds. I'm not a patient person and I definitely don't handle the unknown well. I'm the kid who searched the house high and low, unwrapped all the presents and rewrapped them at Christmas. hahahaha

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Hi @michelle74,

It doesn’t sound silly at all! When coping with any health setback, we tend to forget that it takes a toll not only on the body, but also our emotions and state of mind – and more often than not, the way we feel mentally, can play a huge role in the recovery process. I came across this great Mayo Clinic page about "Cancer survivors: Managing your emotions after cancer treatment” https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-survivor/art-20047129
Take a look, I’d really like to hear back from you.

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