Living with colorectal cancer - Meet others & come say hi

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 🙂 )

Hi @bonnieb81, yes, you are a member of this group. I was re-reading some of your background in this discussion you started:
- High Risk for Colon Cancer due to Pre-cancerous adenoma, age, or both https://connect.mayoclinic.org/discussion/high-risk-for-colon-cancer-due-to-pre-cancerous-adenoma-age-or-both/

You've been dealing with this suspicion and the unknown for almost a year now. That must be worrisome. Waiting is tough! How are you holding up?

Thank you very much Colleen, I’m not holding up well at all, being a full time caregiver to my husband... slipping into more dementia (Lewy and Alz + Parkinson symptoms...) I’ve had no help.. if I’m facing a section of colon removal, and for sure the operation for polyp in my appendix... I have no I’m home help, so I’m working on that. He’s been in 2 rehabs and 3 hospitals for low-flow strokes due to hypotension, autonomic BP, and now Postprandial symptoms, his systolic drops 40-60 points after eating, tiny meals, or just a pc of toast. All clinical trials seem to cut-off at 85.. he will soon be 90!! The Drs. Which are over 10 neurologists don’t seem to be able to come up w/ any help at all. So, I’ve really had to be full time nurse... especially with his strange BP symptoms. Waiting to hear the new results on colonoscopy due to the catscan in Aug. 2019... showing “concern for malignancy” I worry about the lack of expediency... which now the ileocecal valve and cecum are added to the ‘concern... everyone thinks I’m 60 instead of 82, while flattering, I’m afraid my insides are much older looking and acting!!! Thank you so much. Mayo in Jackdonville last said, if malignancy is found, I should contact them again. (Jacksonville🙏) for their help... I’m losing confidence and faith in my current physicians.

Beautiful picture, @bonnieb81 I hope you'll add it to your profile. Here's how to update your profile: https://connect.mayoclinic.org/page/about-connect/newsfeed-post/how-to-update-your-profile/

I'm so sorry to hear that you have multiple health issues to manage and the increasing caregiver duties for your husband. You're not alone. You might wish to also become a member of the Caregivers: Dementia group to get support from others. Click here: https://connect.mayoclinic.org/group/caregivers-dementia/

I strongly encourage you to contact Mayo Clinic in Jacksonville again. Here's the number: http://mayocl.in/1mtmR63
You can self-refer or ask your doctor for a referral.

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.

Thank you very much Colleen, I’m not holding up well at all, being a full time caregiver to my husband... slipping into more dementia (Lewy and Alz + Parkinson symptoms...) I’ve had no help.. if I’m facing a section of colon removal, and for sure the operation for polyp in my appendix... I have no I’m home help, so I’m working on that. He’s been in 2 rehabs and 3 hospitals for low-flow strokes due to hypotension, autonomic BP, and now Postprandial symptoms, his systolic drops 40-60 points after eating, tiny meals, or just a pc of toast. All clinical trials seem to cut-off at 85.. he will soon be 90!! The Drs. Which are over 10 neurologists don’t seem to be able to come up w/ any help at all. So, I’ve really had to be full time nurse... especially with his strange BP symptoms. Waiting to hear the new results on colonoscopy due to the catscan in Aug. 2019... showing “concern for malignancy” I worry about the lack of expediency... which now the ileocecal valve and cecum are added to the ‘concern... everyone thinks I’m 60 instead of 82, while flattering, I’m afraid my insides are much older looking and acting!!! Thank you so much. Mayo in Jackdonville last said, if malignancy is found, I should contact them again. (Jacksonville🙏) for their help... I’m losing confidence and faith in my current physicians.

Hi, I’m so happy to have found this group. To be honest I’m a mess right now and my head has been on a swivel since July and was diagnosed with cancer after my colonoscopy. I had surgery September 11 and am feeling pretty good. The whole process of tests, finding a surgeon and oncologist has been a blur. My youngest daughter has been my rock! I have been blessed with good health my whole life and cancer sure has rocked my world and not in a good way. I keep most of all the negative thoughts to myself so I don’t overly worry my family and friends but think it might be easier to “unload” here to people I don’t know. It’s the unknown about what the next steps will be that keeps me awake at night. I see my oncologist this week and will find out what he tells me I need to do. I’m so nervous and scared about it all. I remain positive despite the anxiety.

Helo all,
My name is EvaG and I was diagnosed with rectal cancer recently, just a week short of my 60th birthday, in July 2023. I have been suffering from constipation for months, so my family doctor sent me to do the stool test (results were clear!), and then sent me for a scheduled colonoscopy to a GI specialist (usually done every 10 years after your 50th BD). The colonoscopy showed me on the clear as well, aside from a minor polip which was removed. A week later I ended up in the emergency with a severe constipation pains: after emergency CT scan I was told that there was a mass in my rectum, which the doctors strongly suspected was cancerous, and urged me to follow up with my GI and family doctors. This is when I felt I have fallen off the Rainbow Bridge into the Niagara Falls... I was drowning, scared, numb... My son's family had just arrived and brought me my most precious birthday present - my 5 year old granddaughter! So instead of a week off with my family and friends, hoping to be visiting exciting and beautiful places in southern Ontario, I spent days with various medical personnel being probed, examined, poked with various needles, re-examined, and all over again... So, after 3 colonoscopies within a week, an MRI, and 3 separate consults later (referred by the original GI), living in a paralyzed fear waiting to hear when is my expiry date due, I received my final diagnosis 3 weeks later - Signet Ring cell Adenocarcinoma, T2, no metastasis, mass approx 4cm in the rectum muscle wall, near a node, close to the anal end. I feel lucky, that at the time when all this happened, I had my loved ones beside me, and I continue to have their love and support! I feel lucky and I am immensely grateful, that since the initial discovery of my cancer 2 months ago, the doctors managed to pinpoint exactly which type of cancer I have, and prepared a treatment plan for me to folow going forward. I already completed my 25 course chemoradiatiion, a chemo is planned to follow this November with the aim to shrink the tumor to an operable size. I am determined to endure all the pain during my steep cancer journey, will follow the best advice of my 3 medical teams and continue to believe that I will be a Cancer Survivor! After all, it is a s....y situation, and the best I could do is Hope and Laugh about it, so my social name is BadAssEva 😉 Have Hope and cherish the Love of the people closest to you ♥️
Sharing with you All my best wishes for complete recovery in your own cancer journey!

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.