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?

@jamienolson

Hello @hrant and welcome to the community! I’m glad you have found us. This is a safe place for you to share your experiences and meet others who are potentially going through something similar to yourself.

Have you or a loved one been diagnosed with colorectal cancer?

Jump to this post

Jamie
if you read my answer to travelgirl you will know my story , but one thing I would like to say , this is a great place to get to know about all what happens at the ground level , away from academia and doctors offices .
thank you for a great job . Hrant.

REPLY
@travelgirl

@hrant Well if I had to take a wild guess? It was because the first two Drs when doing the biopsy did not get the tissue from the exact spot where the active cancer was. I will say this. I learned from my Mom’s death that you never trust a precancerous diagnosis. Always try and rule out cancer 100% percent. My Mom was told precancerous, and even her path report stated to rule out the cancer. The Dr. opted to ignore that bit of information. With him doing so, and her refusing to get additional medical opinions. Well I am sad to say, she ended up only living 2 years. The Dr. went ahead performed a surgery which ended up spreading the cancer all over her. Always get additional DR’s opinions. I believe Mayo clinic just did a study that stated that 75% of original medical diagnosis were incorrect. I believe that is true. I talk to many people that spend months trying to figure out what is wrong with them? Hope this answer helps?

Jump to this post

@hrant Thank you for sharing.

I also was tested for Lynch Syndrome. Believe it or not I am NOT Lynch positive. But you would suspect I am. Which is odd. My Mom died from Endometriosis cancer. Plus in my family tree there is Cecum cancer, Colon cancer, Bladder cancer and breast cancers. Then me with the double trouble of cancers.

You are correct we are taught to treat the illness instead of being proactive. I think that was the mentality we grew up with. Tomorrow I am headed to a Dermatologist’s office to get checked over for skin cancer. We truly need to be proactive in our health if we want to ward off illnesses.

Also, it is my understanding that if a person is Lynch positive, you need a team of Dr.’s to fine tooth comb over your body. Looking for anything 1 Minuscule out of place. That way they can zap it before it proposes a problem.

In a sense I got lucky finding both of my cancers early. Now I am watched like a hawk and what the Dr.’s aren’t watching like a hawk I am. We need to be one step ahead, just like you said with our health.

I wish you the best. Take care, and don’t forget to Pop on and visit. We would love to all hear what your research finds. 🙂

REPLY
@travelgirl

@hrant Well if I had to take a wild guess? It was because the first two Drs when doing the biopsy did not get the tissue from the exact spot where the active cancer was. I will say this. I learned from my Mom’s death that you never trust a precancerous diagnosis. Always try and rule out cancer 100% percent. My Mom was told precancerous, and even her path report stated to rule out the cancer. The Dr. opted to ignore that bit of information. With him doing so, and her refusing to get additional medical opinions. Well I am sad to say, she ended up only living 2 years. The Dr. went ahead performed a surgery which ended up spreading the cancer all over her. Always get additional DR’s opinions. I believe Mayo clinic just did a study that stated that 75% of original medical diagnosis were incorrect. I believe that is true. I talk to many people that spend months trying to figure out what is wrong with them? Hope this answer helps?

Jump to this post

travelgirl
yes you are very lucky , About the genetic testing , maybe someone has made a mistake over there too , I even read that some proteins that are around the genes have the power to switch the genes on and off ( nobody knows why and when ), some people never get cancer even though they are lynch positive . there are a lot of unknowns in this field .
Something came to my mind for you if I may say it , even though you are not lynch positive , why don’t you treat yourself as it was positive and just fallow all the testing recommendations that apply to you . it will be a little expensive depending on your insurance plan but I decided when ever my plan says no I do it anyway and pay out of pocket . I am going beyond the NCCN guidelines . All of this including my yearly health insurance and all tests are roughly costing $ 10 K per year , which is fine with me .
maybe you want to consider that .
Take care , Hrant.

REPLY
@travelgirl

@hrant Well if I had to take a wild guess? It was because the first two Drs when doing the biopsy did not get the tissue from the exact spot where the active cancer was. I will say this. I learned from my Mom’s death that you never trust a precancerous diagnosis. Always try and rule out cancer 100% percent. My Mom was told precancerous, and even her path report stated to rule out the cancer. The Dr. opted to ignore that bit of information. With him doing so, and her refusing to get additional medical opinions. Well I am sad to say, she ended up only living 2 years. The Dr. went ahead performed a surgery which ended up spreading the cancer all over her. Always get additional DR’s opinions. I believe Mayo clinic just did a study that stated that 75% of original medical diagnosis were incorrect. I believe that is true. I talk to many people that spend months trying to figure out what is wrong with them? Hope this answer helps?

Jump to this post

@hrant and @travelgirl I’m loving this exchange that you’re having.
I’m joining in to let you know about the discussion about Lynch Syndrome that is happening in the Cancer group here:
– Lynch Syndrome http://mayocl.in/2oVneMV

Hrant, in that discussion you’ll meet others who tested positive.
Colorectal screening is so important. At my last colonoscopy they found a pre-cancerous polyp too. I want to stop colon cancer in its tracks. My dad waited too long before getting checked.
I invite you both to share your screening experiences here:
– What’s your colorectal cancer screening story? http://mayocl.in/2mKI78m

REPLY

My treatment starts Monday. Im upset to have to wait so long to get treatment going but I’m terrified to start it. I’m stage 3b and scared it will be stage 4 by the time treatment gets going. I have squamous cell carcinoma. Just wondering if anyone else has this type of cancer? I will be having six weeks of radiation. The first week I will also get one treatment of Mitomycin-C chemo and I will be on a four day pump of 5-FU chemo. Then the fourth week of radiation I will be on another four days of 5-FU chemo. I have been told to be more nervous of the radiation because that will get really rough around week four. But I’m way more nervous about the chemo!!! I don’t take medications. I don’t like to because I’m the poster child for the side effects. I rarely take Tylenol. I had three kids with no meds. I would love to talk with someone who went thru the same treatment so I could ask questions.

REPLY
@mouselife

My treatment starts Monday. Im upset to have to wait so long to get treatment going but I’m terrified to start it. I’m stage 3b and scared it will be stage 4 by the time treatment gets going. I have squamous cell carcinoma. Just wondering if anyone else has this type of cancer? I will be having six weeks of radiation. The first week I will also get one treatment of Mitomycin-C chemo and I will be on a four day pump of 5-FU chemo. Then the fourth week of radiation I will be on another four days of 5-FU chemo. I have been told to be more nervous of the radiation because that will get really rough around week four. But I’m way more nervous about the chemo!!! I don’t take medications. I don’t like to because I’m the poster child for the side effects. I rarely take Tylenol. I had three kids with no meds. I would love to talk with someone who went thru the same treatment so I could ask questions.

Jump to this post

Thanks for continuing your story here, Mouselife and introducing yourself to the other members of the Colorectal Cancer group. @travelgirl @starrlight @diannechildress @sallyg @bush, will you join me in welcoming, @mouselife?

The waiting is tough. In your earlier message you said that you had surgery just over 3 weeks ago, and you’ll be starting radiation and chemo on Monday. I assume that the time was needed to heal after surgery. It sounds like things moved pretty quickly after the colonoscopy. Typically colon cancer is very slow growing. I’m not sure about squamous cell carcinoma of the colon however. As you know squamous cells are the skin cells that make up the bowel lining, together with the gland cells. This is a rarer type of colon cancer.

I’m confident that other members will share their treatment experiences with you and offer tips for managing potential side effects. Did your cancer care team tell you the more common side effects to expect and how you can manage them?

REPLY
@mouselife

My treatment starts Monday. Im upset to have to wait so long to get treatment going but I’m terrified to start it. I’m stage 3b and scared it will be stage 4 by the time treatment gets going. I have squamous cell carcinoma. Just wondering if anyone else has this type of cancer? I will be having six weeks of radiation. The first week I will also get one treatment of Mitomycin-C chemo and I will be on a four day pump of 5-FU chemo. Then the fourth week of radiation I will be on another four days of 5-FU chemo. I have been told to be more nervous of the radiation because that will get really rough around week four. But I’m way more nervous about the chemo!!! I don’t take medications. I don’t like to because I’m the poster child for the side effects. I rarely take Tylenol. I had three kids with no meds. I would love to talk with someone who went thru the same treatment so I could ask questions.

Jump to this post

Colleen,
i have gone nowhere with the colon canc. and become very frustrated especially when the brst canc. dr. asks  "what are you doing for your rectal tumor"  i tell him i  am doing the best i can trying to get into Mary Clinic as i cannot have the bag.  My nurse practitioner is doing the best she can do trying to get me in there.  the orig. request was sent at the first of this yr. by my Dr. who has since left, there is something going on with my ins. and the Dr's office about some kind of form, so the woman that does the forms is going to try again.  So therefore have not had anything constructive to add to the group other then i pray all will survive their ordeal.
regards,  Starrlight

Liked by sockwelljames

REPLY
@mouselife

My treatment starts Monday. Im upset to have to wait so long to get treatment going but I’m terrified to start it. I’m stage 3b and scared it will be stage 4 by the time treatment gets going. I have squamous cell carcinoma. Just wondering if anyone else has this type of cancer? I will be having six weeks of radiation. The first week I will also get one treatment of Mitomycin-C chemo and I will be on a four day pump of 5-FU chemo. Then the fourth week of radiation I will be on another four days of 5-FU chemo. I have been told to be more nervous of the radiation because that will get really rough around week four. But I’m way more nervous about the chemo!!! I don’t take medications. I don’t like to because I’m the poster child for the side effects. I rarely take Tylenol. I had three kids with no meds. I would love to talk with someone who went thru the same treatment so I could ask questions.

Jump to this post

The first surgery was to get a better biopsy because they wanted to make sure what kind of cancer it was since what I have is more rare. That was in the first week. Which it is categorized as anal cancer. The second surgery was to put in the double port. That was this past Friday. Does anyone else have a port? Mine is getting better but this is way more painful than I expected! The tube that goes in my neck is what’s bothering me the most. It feels so tight and pulling all the time. Makes my throat and ear hurt. The doctors have told me this wouldn’t be an easy road with the radiation. They said I was going to be in everyday m-f for the next six weeks and if I had any problems they would help. I read that it will feel like third degree burns on the inside of your rectum by the fourth week. That makes me nervous. But I’m more scared of the chemo right now. Everyone keeps saying to me “be strong” “you can do this”. Well I want to smack them sometimes. I’m scared to death and I have no choice but to go through this! I have kids that still need me and that is what I’m fighting for. But of course I’m still thinking about the what if treatment doesn’t work.

REPLY
@mouselife

My treatment starts Monday. Im upset to have to wait so long to get treatment going but I’m terrified to start it. I’m stage 3b and scared it will be stage 4 by the time treatment gets going. I have squamous cell carcinoma. Just wondering if anyone else has this type of cancer? I will be having six weeks of radiation. The first week I will also get one treatment of Mitomycin-C chemo and I will be on a four day pump of 5-FU chemo. Then the fourth week of radiation I will be on another four days of 5-FU chemo. I have been told to be more nervous of the radiation because that will get really rough around week four. But I’m way more nervous about the chemo!!! I don’t take medications. I don’t like to because I’m the poster child for the side effects. I rarely take Tylenol. I had three kids with no meds. I would love to talk with someone who went thru the same treatment so I could ask questions.

Jump to this post

@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

Liked by mouselife

REPLY
@mouselife

My treatment starts Monday. Im upset to have to wait so long to get treatment going but I’m terrified to start it. I’m stage 3b and scared it will be stage 4 by the time treatment gets going. I have squamous cell carcinoma. Just wondering if anyone else has this type of cancer? I will be having six weeks of radiation. The first week I will also get one treatment of Mitomycin-C chemo and I will be on a four day pump of 5-FU chemo. Then the fourth week of radiation I will be on another four days of 5-FU chemo. I have been told to be more nervous of the radiation because that will get really rough around week four. But I’m way more nervous about the chemo!!! I don’t take medications. I don’t like to because I’m the poster child for the side effects. I rarely take Tylenol. I had three kids with no meds. I would love to talk with someone who went thru the same treatment so I could ask questions.

Jump to this post

@mouselife Sorry about your situation.. I had surgery for a stage 1 Adenocarcinoma cecum cancer. It took about 6 months before I was somewhat back to normal. I now need yearly colonoscopies that are done by the Polyp Patrol team.. I wish you the best with your treatments.. I know this isn’t fun.. For me with my 2 cancer diagnosis the hardest thing, is the trying to stay focused with life. I find myself wanting to do nothing all day. Working as a little as I have too, and feeling sorry myself. I just found a cancer exercise group at the hospital by me. I joined that , hoping it gives me what I need to get back into the gym and take back my life.

REPLY
@mouselife

My treatment starts Monday. Im upset to have to wait so long to get treatment going but I’m terrified to start it. I’m stage 3b and scared it will be stage 4 by the time treatment gets going. I have squamous cell carcinoma. Just wondering if anyone else has this type of cancer? I will be having six weeks of radiation. The first week I will also get one treatment of Mitomycin-C chemo and I will be on a four day pump of 5-FU chemo. Then the fourth week of radiation I will be on another four days of 5-FU chemo. I have been told to be more nervous of the radiation because that will get really rough around week four. But I’m way more nervous about the chemo!!! I don’t take medications. I don’t like to because I’m the poster child for the side effects. I rarely take Tylenol. I had three kids with no meds. I would love to talk with someone who went thru the same treatment so I could ask questions.

Jump to this post

@mouselife,
i understand your feelings above of not wanting to do anything, i cannot seem to get going with life any longer, every time i try to do something positive something else comes along, i have no energy and no life so i stay home and watch tv. or go on this computer hoping to become inspired of course do pray alot. i joined a canc group here last year it lasted a couple of months then is no more so i found this online group however do not stay focused here either as i should, i do not think i feel sorry for myself i just have no interests anymore, every time i turn around some new disease has entered my body.

stay focused on what you are doing with the exercise group at the hosp, i used to go to the gym all my life last two times i hurt my shoulder and then my foot so qhit, tried to go to Silver Sneakers few months ago and went once that was it.

all will turn out for you because you are making the effort to go forward and good luck to you and all others that struggle with this and especially the no energy issue. You will get your life back.

starrlight

REPLY
@mouselife

My treatment starts Monday. Im upset to have to wait so long to get treatment going but I’m terrified to start it. I’m stage 3b and scared it will be stage 4 by the time treatment gets going. I have squamous cell carcinoma. Just wondering if anyone else has this type of cancer? I will be having six weeks of radiation. The first week I will also get one treatment of Mitomycin-C chemo and I will be on a four day pump of 5-FU chemo. Then the fourth week of radiation I will be on another four days of 5-FU chemo. I have been told to be more nervous of the radiation because that will get really rough around week four. But I’m way more nervous about the chemo!!! I don’t take medications. I don’t like to because I’m the poster child for the side effects. I rarely take Tylenol. I had three kids with no meds. I would love to talk with someone who went thru the same treatment so I could ask questions.

Jump to this post

Hi starlight

We all need to make choices in this journey that are best for us
And be at peace with our decisions
I hope you have a good support system in place to help you through this difficult time
You will be in my prayers
Sally

REPLY

Hi @mouselife, I’ve been thinking about you and wondering how you are recovering from radiation treatment. Are you still receiving chemo?

REPLY
@colleenyoung

Hi @mouselife, I’ve been thinking about you and wondering how you are recovering from radiation treatment. Are you still receiving chemo?

Jump to this post

I’m done with radiation and chemo. I’ve been done six weeks today. I am just starting to feel okay. I have a lot of small issues but at least I can eat sleep and do daily functions. Haven’t been able to go back to work yet. I’m still very weak and tired all the time. I’ve been still crying about things. It’s hard to wait to find out if the treatment worked or not. I won’t find out that until December!

REPLY
@colleenyoung

Hi @mouselife, I’ve been thinking about you and wondering how you are recovering from radiation treatment. Are you still receiving chemo?

Jump to this post

I get that, mouselife! There’s a German saying that when we feel vulnerable and cry easily, we’re “close to water.” You’ve been through a lot and there are still lots of unknowns. I’m sure you’re asking “Did the treatment work?” “Will it come back?” Waiting for the scans in December may feel like a long time. I hope as you gain a bit more energy each day that you’re able to turn your thoughts more and more to things non-related cancer. Easier said than done, I’m sure.

I wonder if it might help to read this discussion on Connect.
– Happiness a One Week Journey https://connect.mayoclinic.org/discussion/happiness-a-one-week-journey/
In this discussion, @hopeful33250 and other members talk about following a week long program with Dr. Sood from Mayo Clinic. It’s a free email program.

Just know that we’re here and we’re listening. Happy to chat any time on Connect.

REPLY
Please login or register to post a reply.