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Living with colorectal cancer - Meet others & come say hi

Posted by @colleenyoung, Feb 28, 2017

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?

REPLY

Hi @travelgirl @martid @sue_in_delaware @ilene1 @soul @brglight @nannytart @bush @sallyg @starrlight @joannem @jww1 @azlinda @retairforceman @user_cha5e73f6 @brucey1 @nananet @lynne:

I’d like to invite you to the new group on Connect dedicated to discussions about colorectal cancer. It’s a space where we can ask questions, share tips and learn about living with colorectal cancer from each other. Pull up a chair and tell us a bit about yourself.

@colleenyoung

Hi @travelgirl @martid @sue_in_delaware @ilene1 @soul @brglight @nannytart @bush @sallyg @starrlight @joannem @jww1 @azlinda @retairforceman @user_cha5e73f6 @brucey1 @nananet @lynne:

I’d like to invite you to the new group on Connect dedicated to discussions about colorectal cancer. It’s a space where we can ask questions, share tips and learn about living with colorectal cancer from each other. Pull up a chair and tell us a bit about yourself.

Jump to this post

I am soul and I am a care giver to my Mom who was diagnosed with colorectal cancer and went for a critical surgery a year ago. She is now recovering slowly. She was 11 nights at the hospital. The first surgery took almost 7 hours and the second surgery – reconnect took her 2 -3 hours. We had to go through under tremendous stress and it was difficult. My sister is one of the care giver closer to her. We have been so grateful for the completion of her surgery. My Mom has changed her eating habits and her diet since then. My Mom is recovering slowly. She just had a follow up PET scan 2 weeks ago and the outcome had been very promising that there is no cancer cell. It was a big relief to all of us. My Mom is very fortunate. She would have died if she did not go for the operation and remove it. We keep positive along with the support of family friends and indeed a good doctors and advanced equipments. For those who diagnosed with colorectal cancer, we would suggest to find a good doctor and hospital like Mayo Clinic. Keep strong and positive physically and mentally. Patience is important as well. Wishing the best to all both patients and care giver. Praying for everyone. Soul

@colleenyoung

Hi @travelgirl @martid @sue_in_delaware @ilene1 @soul @brglight @nannytart @bush @sallyg @starrlight @joannem @jww1 @azlinda @retairforceman @user_cha5e73f6 @brucey1 @nananet @lynne:

I’d like to invite you to the new group on Connect dedicated to discussions about colorectal cancer. It’s a space where we can ask questions, share tips and learn about living with colorectal cancer from each other. Pull up a chair and tell us a bit about yourself.

Jump to this post

Hi Soul,
Thanks for kicking off the introductions. What a wonderful outcome for your mother and your family. I remember when you first joined Connect and the stress point that you were in at the time, and your mom being so afraid of the surgery to the point that she thought she wouldn’t have the operation. It has been quite a year for you. May 2017 continue in good health!

Thanks Colleen for remembering our difficult time and for wishes for the good health. Yes, my Mom was afraid of operation. She would have died if she did not have surgery.. I am so grateful that we found a doctor who went to practice at Mayo Clinic. You connected me with a world that can assure our mission accomplish. In addition, I had a chance to meet and share the experiences with the people from the same boat. I learned a lot from them not only colorectal cancer but also different health issues and disease. Mayo connection is amazing. Mayo connects us deeply and sincerely especially you coordinator, making us connect with the world. Thank you so much again and wish peace, love and miracles to those suffering and a deep appreciation to all the care giver. May you all experience only love, kind and gentle. Blessings to you and all. Many many thanks.

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 🙂 )

@colleenyoung

Hi @travelgirl @martid @sue_in_delaware @ilene1 @soul @brglight @nannytart @bush @sallyg @starrlight @joannem @jww1 @azlinda @retairforceman @user_cha5e73f6 @brucey1 @nananet @lynne:

I’d like to invite you to the new group on Connect dedicated to discussions about colorectal cancer. It’s a space where we can ask questions, share tips and learn about living with colorectal cancer from each other. Pull up a chair and tell us a bit about yourself.

Jump to this post

Soul,
so glad to hear that your Mom is doing well and i also pray that she will continue the path to continued health.

Starrlight

Liked by jenna12

@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 🙂 )

Jump to this post

Travelgirl,

Quite an ordeal you had to endure however perseverance certainly paid off, so very happy you are doing so well, certainly shows us there is hope and healing out there, will pray that you never have to have a treatment, hang in there and continue your upward journey for health.

starrlight

@colleenyoung

Hi @travelgirl @martid @sue_in_delaware @ilene1 @soul @brglight @nannytart @bush @sallyg @starrlight @joannem @jww1 @azlinda @retairforceman @user_cha5e73f6 @brucey1 @nananet @lynne:

I’d like to invite you to the new group on Connect dedicated to discussions about colorectal cancer. It’s a space where we can ask questions, share tips and learn about living with colorectal cancer from each other. Pull up a chair and tell us a bit about yourself.

Jump to this post

Hello Starrlight, thank you so much for your kind wishes for my Mother. It is appreciated. Peace and light, Soul

@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 🙂 )

Jump to this post

Hello Travelgirl,
I have learned more of from your experience and I really sympathize how you went through. I thought it is too much what I have seen what my Mom went through. But you had a lot. I admired your strength and courage. You are amazing. I pray for you. You really inspired all of us. I salute you Travelgirl. Keep it up as you live. Hope is always there for you. Thank you for sharing with us. May you always keep up with your hope and strength. Blessings to you. Soul

to travelgirl and everybody else
how and why the first 2 biopsies did not show cancer . Hrant

@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?

@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

Thank you travelgirl , what was the original size of the polyp that they analysed twice as precancerous , this is really scary, I am learning so much .

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?

@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 Underneath an Ulcer in my Cecum was a Flat Polyp. I think they said it was 5mm. The third Dr. stated it was 15mm. This was over a 3 month time period. Can you share what you or a loved has been through? Also I can say first hand. Trying to guess and put the puzzle pieces together of an illness by reading online. Well it will make you freak out. Cause if your like me? If I start reading enough about prostrate cancer, before I know it, I will swear I have prostate cancer and I don’t even have a prostrate. LOL.. The best thing you can do is seek out treatments from a medical facility that has a highly rated GI/ Colorectal cancer departments.

@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?

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travelgirl
You are very funny . My situation is very different , I am very proactive and wanting to learn and be ready for what is coming at me .
At 59 years old and last year I discovered that I have lynch syndrome ( MSH6 ) with no symptom at all , so now I am going to a colonoscopy each year and wanting to do additional test beyond the recommendations . I live very close to UCLA in los Angeles and they are good , but the system is made to cure disease after you have it not get you ready for what is coming . That is why I want to learn as much as possible from the experiences of others so I will be ready . there is a saying that I read long time ago : “peace is the only time to prepare for war ” . I do not want to learn all this when I am fighting for my life . I am going to be as ready as I can .
That is why I was chocked by your story , I printed it out to keep in my files .
5 people died of lynch from my mother’s side . we knew of something wrong in the family but we had no access or heard of genetic testing , then a cousin from Canada called me and told me that she had cancer and after testing she urged my brother and i to test . my brother did and he does not have it . I put it aside and forgot about it . last year I did a colonoscopy , they found 2 polyps 2 and 3 mm
they said it was precancerous with no dysplasia , that woke me up and I tested , boom I had it .
now all I do is educate myself , I love it . it is so interesting to learn how our bodies works .
Take care , Hrant

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