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Living with colorectal cancer - Meet others & come say hi
Colorectal Cancer | Last Active: Oct 23, 2023 | Replies (152)Comment receiving replies
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 🙂 )
Replies to "Hello everyone I am Travelgirl. I am a Rare & Unusual Cecum Colon Cancer survivor. Cecum..."
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
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'!
Hi Travelgirl. I had a similar outcome when my doctor found cancerous polys after a routine colonoscopy the first of October.. I had 12” of colon removed, (sigmoid) and twenty three lymph nodes. All came back clear. I joined the chat group at 4-5 weeks because my dr (surgeon) assured me before I left the hospital (7 day stay) that in 4-6 weeks I would be back to pre-surgery condition. I was very grateful to Colleen and Sundance6 for answering my questions and reassuring me that it was early and nothing was unusual in my healing It’s been 2* months and I was still experiencing urgency and frequent bowel movements after eating. (6-7 nightly) I found that restricting my food intake during the day was my only way to get out and keep appointments. Last week, I got a jury duty notice, which I thought “no way” I could meet and emailed my doctor regarding a letter and a request for an image of my post surgery colon. (Thought maybe the holding area of my sigmoid had been removed??) I had previously contacted (emailed) my doctor regarding this and was told to drink fiber (in November). This now is January and I guess my doctor decided that something was wrong and I had a c-diff test. It came back positive and I am now on antibiotics for ten days. I’m hoping that this will take care of the problem and I can get on w/it. So, first thank you for your support, secondly, my heart goes out to everyone who has such hard struggles, and thirdly, it shows me how important it is to have a support system to educate and guide a person who is struggling. I could have easily gone undiagnosed thinking that this is what I had to live with. Including the pain I had started to experience. Being able to contact this group and be heard helped me big time. Take care. Wishing you all the best 2020 that you can have. Sincerely Virgo52
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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