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?

@jrsmarkey

Hi I had stage 3 colorectal cancer in March of 2016, with 29 days of radiation and chemo. My resection of 1 foot colon removed July 2016. I had a bowel blocakage August 2016 and had emergency surgery to remove scar tissue and blockage and then a reversal of my illesostomy in September of 2016. My question is after all of this and almost two years out now I still have 1 day a week where I feel colon spasms along with clustering and after one to two days of this I am just exhausted. It resembles Krohnes disease and I wanted to know if anyone else had similar issues and what they do when issues like this happen?

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Most of the time it’s due to eating something that is overly spicy. My Doctors just say go back to the Bratty diet until you get some relief. Really tired of eating the blandest things on earth. Why even bother eating if you have to eat that way! I have tried taking CBD oil and that seems to help with a lot of my symptoms. I feel inflammation is to blame for most of my issues.

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Many of you sharing about your experiences with cancer in the Colorectal Cancer group have already met @travelgirl. She is featured on this week's member spotlight. Click the link and get to know a little more about Jackie @travelgirl

– Where there’s a Will there's a Way: Meet @travelgirl https://connect.mayoclinic.org/newsfeed-post/where-theres-a-will-theres-a-way-meet-travelgirl/

See more Member Spotlights https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

Liked by vyomgargramji

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Hi my mother had stage 3 colorectal cancer doctors operated her immediately because her stomach was bloating due to blockage of rectosigmoid junction .
They did colonoscopy and after surgery we got the biopsy report in which it was clearly mentioned that it was a stage 3 colorectal cancer.

Best oncologist of my city said not to worry she gave 8 chemos and after that said treatment is over but a stroma operation was left
Before the operation we did serum report it came 4.23 it was high
Doctor said to get another report after 20 days the CEA level reduced it came 4.13 but still high
We did a CT scan it concluded everything normal but few non necrotic mesenteric lymph nodes were found with one lymph node of larger size in the right lumbar region
Now doctor saying wait for 3 months
After 3 months bring the new CEA report
Then we will decide what to do

Now I want help what to do
I want to cure this
I want best doctor and best consultation
Plz help me on this matter
Thankyou

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My dad was diagnosed with Stage III colorectal cancer last December. On top of this, he also has Non-Specific Interstial Pneumonia (lung disease). He went thru about half of the recommended chemo as the side effects were awful. He is going in for a PET scan on the 27th of December as his CEA levels were about 150. He is on supplemental oxygen and feels tethered to his machine. I was able to get a machine delivered to my house over Thanksgiving and he was able to come out for a night. Hoping he feels well enough to come out at Christmas. I feel so lost. I live an hour away and try to help him as best I can and keep it together. He knows its terminal and we don't talk much about it. I just kind of follow his lead. I've been trying to encourage him to get his groceries delivered (He fell trying to carry everything in to the house from the car). He's very stubborn. It's the little things we take for granted. I guess I am just trying to keep from falling apart. My brother helps when he can but has 7 kids. Ok, I'm done. Just needed a place to unload.

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@lkissinger

My dad was diagnosed with Stage III colorectal cancer last December. On top of this, he also has Non-Specific Interstial Pneumonia (lung disease). He went thru about half of the recommended chemo as the side effects were awful. He is going in for a PET scan on the 27th of December as his CEA levels were about 150. He is on supplemental oxygen and feels tethered to his machine. I was able to get a machine delivered to my house over Thanksgiving and he was able to come out for a night. Hoping he feels well enough to come out at Christmas. I feel so lost. I live an hour away and try to help him as best I can and keep it together. He knows its terminal and we don't talk much about it. I just kind of follow his lead. I've been trying to encourage him to get his groceries delivered (He fell trying to carry everything in to the house from the car). He's very stubborn. It's the little things we take for granted. I guess I am just trying to keep from falling apart. My brother helps when he can but has 7 kids. Ok, I'm done. Just needed a place to unload.

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Hi @lkissinger,

I’m truly sorry to hear about your father; managing a chronic condition is a tough journey, especially for loved ones, but you don’t have to do it alone. I’m so glad that you’ve joined the Connect community – you’ve come to the right place to unload, to talk with people who have or had similar experiences, and to get support from members who understand what you are going through.

I’m tagging fellow members @sandrabee @soul @ilene1 @sallyg @azcyclist2018 @travelgirl @starrlight @nannytart @minabird @brenz @sportsmom9433 @martid @sue_in_delaware @nananet @bbams @bush to bring them into this conversation so that they may share their insights with you.

Although it’s not you who has cancer, watching a beloved one, your dad, go through it must be very, very hard. The emotions you are experiencing may be different, but those emotions are very valid and need to be talked about. Here, you will find stories of hope – there is always hope, and a diagnosis doesn’t have to be the end; let the Connect community be your sounding board.
@lkissinger, do you feel that you and your dad might be able to talk frankly about the “tough stuff” at some point?

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@vyomgargramji

Hi my mother had stage 3 colorectal cancer doctors operated her immediately because her stomach was bloating due to blockage of rectosigmoid junction .
They did colonoscopy and after surgery we got the biopsy report in which it was clearly mentioned that it was a stage 3 colorectal cancer.

Best oncologist of my city said not to worry she gave 8 chemos and after that said treatment is over but a stroma operation was left
Before the operation we did serum report it came 4.23 it was high
Doctor said to get another report after 20 days the CEA level reduced it came 4.13 but still high
We did a CT scan it concluded everything normal but few non necrotic mesenteric lymph nodes were found with one lymph node of larger size in the right lumbar region
Now doctor saying wait for 3 months
After 3 months bring the new CEA report
Then we will decide what to do

Now I want help what to do
I want to cure this
I want best doctor and best consultation
Plz help me on this matter
Thankyou

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@vyomgargramji Have you gotten any other medical opinions regarding your Mothers condition? From your post it actually sounds like she had been improving. It takes times for chemo to start working. Well I hope she is doing much better!
Jackie

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@lkissinger

My dad was diagnosed with Stage III colorectal cancer last December. On top of this, he also has Non-Specific Interstial Pneumonia (lung disease). He went thru about half of the recommended chemo as the side effects were awful. He is going in for a PET scan on the 27th of December as his CEA levels were about 150. He is on supplemental oxygen and feels tethered to his machine. I was able to get a machine delivered to my house over Thanksgiving and he was able to come out for a night. Hoping he feels well enough to come out at Christmas. I feel so lost. I live an hour away and try to help him as best I can and keep it together. He knows its terminal and we don't talk much about it. I just kind of follow his lead. I've been trying to encourage him to get his groceries delivered (He fell trying to carry everything in to the house from the car). He's very stubborn. It's the little things we take for granted. I guess I am just trying to keep from falling apart. My brother helps when he can but has 7 kids. Ok, I'm done. Just needed a place to unload.

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@lkissinger So sorry to hear about your Dad. It is really hard to watch a loved one go through any medical crisis. It is a horrible helpless feeling one experiences when you can't fix what they are going through. I experienced this with my Mom who passed away from cancer 16 years ago.
Your Dad most likely doesn't want the help cause he has spent his whole life as a caretaker. It is difficult for someone to seek out help when they are used to being the one giving it. His stubborn ways is what keeps him going. Even if he falls doing things we believe he should not be doing. In his mind if he quits doing his normal routine he probably figures it all over. Being self sufficient the best he can gives him hope.
Remember something without Hope there is no cure. Stage III colon cancer is not always a terminal illness. Many people live for many years with stage III and stage IV.
Hang in their and do your best to be part of his life. Do you go with him to his medical appointments? If so let us know how he is doing after his pet scan. Maybe ask the Dr if he can adjust the chemo to a lighter dose. (now I'm not a Dr or is this my specialty so I am only suggesting you ask this this to see if it even is possible?) Hopefully that is an option and may help him.
I wish you and your Dad the Best. I know is it very stressful and painful to have to go through this.
You are welcome to unload on here anytime you need too.
Jackie

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Hello @lkissinger, I am so sorry to hear about your Dad. I have experienced when my Mom had a critical surgery with rectum cancer in 2016. I am aware how hard to go through physically and mentally in real life. I and my sis had to face and move on as time goes by. It has been almost 3 years and we are so blessed that my Mom is now recovering well and it is now the time to follow up checking with PET scan and blood work again for my Mom. I will keep you all posted. I pray for your father and everyone of you as care givers. Being a care giver, we have to be strong and support & stand by ready to assist with what ever it comes up. Being as a coordinator and communicator between the doctor and your loved one is difficult but we have to know what best for your father. There are a lot of cancer survivors. I would suggest to find out the best options and procedure from the doctors and also would like to suggest to listen carefully what your Dad’s concern and work out the best solution with clear thoughts. I wish you and your father a smooth and easy path to go through and keep you all in my prayers. Best wishes, soul

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Hi just had a colonscapy and tol i had colon cancer..scared to death waiting for ct to know where what kind etc

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Diane , you have to tell us more , tell us what the biopsy says and a little of your background . if the tumor is under 10 mm. do not panic . obviously it is better not to have a cancerous tumor . what is done is done panicking is not going to change anything , in fact it is bad for you . You have to stay in control now to fight this .

Liked by michelle74

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@dianemarcia

Hi just had a colonscapy and tol i had colon cancer..scared to death waiting for ct to know where what kind etc

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Hi @dianemarcia, welcome to Connect. I'm so glad you found us at this very scary time. As difficult as it is, I agree with @hrant. It's important to get more information before you hit the panic button. I know this is easier said than done. We're here to help you through and to help answer questions as we can.

Colon cancer is a very slow growing cancer. It probably seems like things are moving quickly and very slowly all at the same time. The wait times between scan and appointments can seem like forever, but it is important to gather all the information to know what you and your team are dealing with to decide on the best course of treatment for you.

What do you know so far?

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@dianemarcia

Hi just had a colonscapy and tol i had colon cancer..scared to death waiting for ct to know where what kind etc

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I know what this is like. Very scary when you hear the C word for the 1st time. The best advice I can give is to just breathe. There is so much going on for you right now. If you would like…we can talk. I am a rectal cancer survivor and have been through the ringer.
You can reach me here or by private message. Hang in there!!

Liked by michelle74

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@colleenyoung

Hi @dianemarcia, welcome to Connect. I'm so glad you found us at this very scary time. As difficult as it is, I agree with @hrant. It's important to get more information before you hit the panic button. I know this is easier said than done. We're here to help you through and to help answer questions as we can.

Colon cancer is a very slow growing cancer. It probably seems like things are moving quickly and very slowly all at the same time. The wait times between scan and appointments can seem like forever, but it is important to gather all the information to know what you and your team are dealing with to decide on the best course of treatment for you.

What do you know so far?

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That i have colon cancer i have ct on the 18 and the 20th with sergon

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@kanaazpereira

Hi @lkissinger,

I’m truly sorry to hear about your father; managing a chronic condition is a tough journey, especially for loved ones, but you don’t have to do it alone. I’m so glad that you’ve joined the Connect community – you’ve come to the right place to unload, to talk with people who have or had similar experiences, and to get support from members who understand what you are going through.

I’m tagging fellow members @sandrabee @soul @ilene1 @sallyg @azcyclist2018 @travelgirl @starrlight @nannytart @minabird @brenz @sportsmom9433 @martid @sue_in_delaware @nananet @bbams @bush to bring them into this conversation so that they may share their insights with you.

Although it’s not you who has cancer, watching a beloved one, your dad, go through it must be very, very hard. The emotions you are experiencing may be different, but those emotions are very valid and need to be talked about. Here, you will find stories of hope – there is always hope, and a diagnosis doesn’t have to be the end; let the Connect community be your sounding board.
@lkissinger, do you feel that you and your dad might be able to talk frankly about the “tough stuff” at some point?

Jump to this post

Just got the results. Cancer is back. Several lemon sized tumors on kidneys and abdomen. Inoperable. We had started discussing hospice and right now he’s not in any pain. Lung disease is really kicking his ass. He showed me where all the important papers are and I am holding together for him. Of course I’ll break down when I head home. I live an hour away. Keeping up with my weekly visits for now. Will increase as necessary. Just want him To be comfortable. He finally got groceries delivered. So the stubbornness is wearing off. TTFN. Thanks for reading 💋

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@lkissinger

Just got the results. Cancer is back. Several lemon sized tumors on kidneys and abdomen. Inoperable. We had started discussing hospice and right now he’s not in any pain. Lung disease is really kicking his ass. He showed me where all the important papers are and I am holding together for him. Of course I’ll break down when I head home. I live an hour away. Keeping up with my weekly visits for now. Will increase as necessary. Just want him To be comfortable. He finally got groceries delivered. So the stubbornness is wearing off. TTFN. Thanks for reading 💋

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I'm so sorry to hear of the inoperable tumors, @lkissinger. I can only imagine how difficult this is for you. Are you beginning to make arrangements with hospice yet? Keep sharing with Connect.

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