Living with colorectal cancer - Meet others & come say hi

@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?

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?

@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
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

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.

@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. 🙂

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.

@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

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.