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colorectal cancer awareness month

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Hi, I'm new to the board for replying, but have read alot of your stories. Wow, everyone should be given a prize for courage and hope. I have recently become a Volunteer Ambassador for the ACS and will travel to Washington in Sept. I am a colon cancer survivor, and am fighting breast cancer right now...2 more treatments and then radiation. But everyone's spirit takes my breath away. I'm working to spread the news to the media, even contacted NBC Today show (Katie Couric is a big supporter)...keep up the great thoughts.

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Thanks Kathi for championing our cause in Washington. Yes, most of us are well aware that March is Colorectal Cancer Awareness Month. I try to do all I can for the ACS and also for the Colon Cancer Alliance. Some of our reps from CCA will be on the Today Show with Katie Couric on March 13 to spread the news. I was supposed to go also, but alas I am still in the fight and finishing my radiation treatments.

There is a lot of courage at this site as well as a lot of heart. We are family!

Thanks again for your support and your work.

Kerry

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Thank you, Kerry, for the info on March 13. I'm sorry you are unable to go...but I will be watching. I am "lucky" with my colon cancer-I had stage II squamous cell in the rectum. Chemo, Rad, surgery to remove the rectum and sygmoid colon. No met at least up to current...I have my "yearly" colonoscopy in April during my breather from the breast treatment...good luck to you with the radiation...that's in May for my breast. How do I get involved with the CCA? Website access the best? Thank you for your help.

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Kathi,

try the website: www.ccalliance.org

Angela Brown is in charge of developing coordinators throughout the US. Let me know how you are doing and if and when you get involved with the CCA. It is a good organization and very responsive to help offered.

Kerry

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Thank you, Kerry, for the info...I sometimes feel that not enough CC awarness for the general population...even tho it is so common. With my big mouth and (currently) bald head, I hope I can be of use. I will be getting involved with the CCA...Thanks again!

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Kathy,

Thank you so much for your involvement with colon cancer. I wish that screening was done earlier than 50 as there are alot of us that were diagnosed younger than 50.

Keep up the good work.

Maureen -- diagnosed on 3/17/03 with stage 3 rectal cancer at age 46---now NED.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Maureen, Did you get the line I did during diagnosis...."This can't be colon cancer, that's more an older man's cancer". Boy, did that irritate me. 49 and a woman, and I hear MANY stories of women

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Kathi and Maureen,

My line I received from 2 different docs was "you look too healthy to be sick" and..."yes, you are anemic, we'll just watch it for a while".

If I had stayed with them, all we would be watching is my grave being dug!

Some docs have a lot to learn!

Kerry

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

In 2001 I got, "It is probably just hemmhroids."

In Aug 2004 I got, "It's either hemmhroids or a small tear in the bowel wall." Given my age, no risk factors to really speak of, and no big symptoms other than bleading.

In Sept 2004 I finally found a new graduate who did a full examination and ordered more tests because she didn't feel comfortable making the decision that it was "nothing" even though she explained that it could be any number of small problems. Thank God for her is how I feel.

Female diagnosed stage III the day after I turned 27.

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

We should compile a list of "lines" we all received regarding our symptoms....we'll make a booklet and call it - WHAT'S MY LINE?

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Kerry, thanks for the best laugh I've had in a while!!! But seriously, maybe someone should...a survivor, so people stop saying "Oh, how awful" to us and then look at us a loons when we ACTUALLY make a joke or laugh (instead of cry). As I said in my first message, thats what I see all here....victims (I know, not supposed to use this word, but a victim is someone that has no choice when something bad happens, I feel)that just won't give up, keep asking questions, keep getting info, to keep us from the possibility of misdiagnosis or nondiagnosis. I was lucky, my PCP was right on my colon problem...from diag to treat 2 months...and diag correctly.

debralla
Posts: 205
Joined: Feb 2006

Diagnosed NOV 2005 age 45 stage IV ....
Hemmroids
Stress
Menopause
Fibromyasia (sp)
I was told the same thing . Like you Kerry . I went in to see my regular Dr ,But she was behind , Then a young Dr came out and asked me if i would'nt mind if he seen me.He then ordered all of these test, which included an ultrasound which showed several liver mets . scoped ,scaned then a port placed all within a week 1/2 . I have just finished my 3rd round of chemo which showed that I am responding .
I called that Young Dr. And Thanked him !!Faith brought us together that day.But the fact that he didn't ingnore my symptoms finally got me diagnosed and into treatment .

markwalled
Posts: 5
Joined: Mar 2006

I want to encourage you. I was dz March 8 2005, stage IV, met to my liver with 8 tumors in liver one on colon that rested on my bladder. Had 35 radiation treatments, 7 months chemo, three surgeries in 10 months, and now am cancer free. It was tough, but God gave me the strength to endure. I will pray for you. I appreicate your sharing . I could almost say the same thing you have. i was told i am so healthy, it must be diverticilitis, took meds for that for 14 days, then the colonoscopy showed the tumor, the CT and ultra sound prior to that were not read correctly , they thought you are not sick. So, here I am a year later, doing ok. I wish you the best.

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

39, female, stage II colon cancer diagnosed Dec 2005.

My lines:

"That's your ascending colon and the lump you feel is just poop."

"You have IBS, take fiber and walk half an hour everyday."

"It's probably your kidney."

"Are you sure you don't have your appendix any more?"

Sad but all true - these were from my primary physician. Obviously I don't see him any more :)

Cheers,
JADot

suezav
Posts: 42
Joined: Dec 2005

my daughter was 22 YEARS OLD last april when she was dx with stage 3 rectal. she had gone to the student health center at college, described her symptoms and was told to change her diet. She knew enough to make an appointment with a gastroenterologist who is now and will always be our hero. he scheduled her for a colonoscopy and the rest is our new reality. I'm so grateful to everyone who is working to increase awareness and making it known that this is not a disease that only strikes people over the age of 50. Once my daughter completes treatment (this june!) i, too, will be working and doing everything i can to educate the public. there is so much hope and inspiration on this site. thank you all... susan

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Wow, Susan, 22. So young. But,this stuff seems to be hitting younger and younger...breast CA, too. So much has changed for the better with treatment, but all of us need to get the word out. Let me know if I can help. I'm a newbie to all of this, but am learning fast. The ACS and others can always use help.
Thoughts and prayers are with you both. Don't forget YOUR colon health, too!

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Kathi and welcome to the brotherhood and sisterhood of "semi-colons".
If you will scusey my french...back in 1997 my "one liner was";
QUOTE..."AW....YOU JUST HAVE SOME CRAZY LITTLE VEINS IN YOUR ARSE SWELLING, BURSTING AND SPOTTING BLOOD OVER YOUR POOP"
After knowing this so-called specialist had just invaded my privacy, where tha sun don't shine, with some funny looking flexible device I took his word for it. He told me to keep an eye on things and if the bleeding continued and my arse kept burnin I oughta come back and have the darn things fixed.
That was 1997 and up 'til 2003 I just kept getting "spasmodic" bleeding but no other symptoms. It was when I started to feel unwell, bled a little heavier and had some painfull stomach cramps I thought something was amiss.I decided to have the haemharroids fixed but under general anaesthetic the surgeon decided to investgate further. That was the night he found cancer...needless to say they never fixed the haemharroids...that was the least of my worries, he said.
By the time they did all the other crappy stuff(pun intended)....won't go into that...you all know it, that things got interesting.
The bleeding came in huge amounts and the cramps made me feel like a female doing the monthly thingy(is it really that bad?)
Anyway, by the time I got into surgery, after 4 weeks of testing, I was in a pretty bad way with 2/3 bowel blockage and a body telling me that somethin just ain't right!I was so ill by then nothing mattered to me...all I wanted was for someone to end the painfull cramps.
The rest is history Kathi....never wanna go thru that again!
So...in a nutshell...I was told that in 97 it was probably early cancer...the specialist then only did the sigmoidoscopy...he should have looked further and all would have been revealed!
BTW......yah gotta forgive me.,..I like to tell my story with a bit of humour gal.
All the best to you....breast cancer?...our very best!
Ross n Jen

.....and to think I was complainin!

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

6 YEARS?????? Ross, thats terrible! Yeah, the pain got me the most, too. "Please, just make it stop!" Thanks for the welcome! I never wanted to be eligible for membership, but I'm glad your guys are here to lift my spirits. I have another chemo this Wed, always get a little nervous, "what side effect is going to happen now". I pretty much get them all, just a sensitive person, I guess (sniff, sniff). Thanks for the thoughts, hope this finds you well now! Kathi

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

6 YEARS?????? Ross, thats terrible! Yeah, the pain got me the most, too. "Please, just make it stop!" Thanks for the welcome! I never wanted to be eligible for membership, but I'm glad your guys are here to lift my spirits. I have another chemo this Wed, always get a little nervous, "what side effect is going to happen now". I pretty much get them all, just a sensitive person, I guess (sniff, sniff). Thanks for the thoughts, hope this finds you well now! Kathi

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KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Thanks for the good thoughts. I am REALLY finding alot of misinformation to the general public like this. But, sort of like marital troubles last generation, we "shouldn't talk about it". Bunk! These are lives we are playing fast and loose with. Wow, am I getting educated with you all's help. Thanks again, Kathi

lfondots63's picture
lfondots63
Posts: 822
Joined: Jan 2006

Hi Kathi,

I want to agree with everyone on this. I am 42 and probably should have caught this sooner. I always thought it was IBS until the cramps and sickness got so bad I couldn't stand it any more. That is when they found blood in my stool and my colon was almost blocked by the tumor. I was also told to eat more fiber, loose weight and exercise. It is amazing how many people out there have this. The testing does need to be started earlier. I know that my kids will get themselves tested at 30 so if it happens again we can catch it early. I'm starting chemo now but I will definately try to raise awareness. I have started at work by being very open about talking about this in public. People need to understand that it is not good but no longer has to be a death sentence. Take care and my prayers are with you.

Lisa

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Lisa, thanks for sharing. IBS seems to be the diag of choice, along with hemorrhoids. Wow, do we need to educate our Primary Care Physicians! Good luck with the chemo...I did it, so can you!
Kathi

terril
Posts: 297
Joined: Apr 2004

Hi Kathi!
Thanks for all your hardwork. Yes, I was told I had IBS for years. No mention of a scope. Now I am stage IV (cancer in the cecum) with mets to my ovaries, tubes, and uterus. Everything is gone, but I have experienced a recurrence. I am determined
to beat the beast. You know!! You beat one, so lets now go after the breast cancer!!! My best to you and continued prayers and thoughts for your complete recovery!!! Terri

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Terri, Wow, what a time you've had! As a precaution, when they removed my rectum and sygmoid colon, they did a complete hyster...so even tho this was squamous cell carcinoma (uterine, from what I gather is this, too) I don't think it can do a local reocurrance. But my "basic quality of life" sure has changed (I always check out where the bathroom is before I eat). You could say I'm no.1 head inspector!!!
Thanks for the thoughts,
Kathi

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi Kathi,

Thanks for getting the word out about this disease. Add me to the list of survivors who had been told for three years that my bloating and constiptation was just IBS. I almost had to insist to have a colonoscopy. When my primary doctor found out he was shocked. He said the same thing that Kerry's doctor said about looking too healthy. I have learned that I we have to be our own advocates. We need to teach the public to insist on tests when they know something is wrong. Thanks again for all you are doing.

I am so sorry that you are dealing with this again. I pray that remainder of your treatment goes well and that you will have complete healing.

Hugs,

Kay

ccartwri's picture
ccartwri
Posts: 82
Joined: Jul 2005

Hi Kathi
welcome. I am 34 years old and was diagnosed with stage 3 rectal cancer late may, 7 weeks postpartum with my first. A beautiful baby girl named Catalina. I have been thru radiation and chemo with TNFerade in a clinical trial at NIH. Surgery at Johns Hopkins with a temp ileostomy and now six months of adjuvant chemotherapy--Folfox 4. I am in my 10th treatment now. Out of 12. so excited to get this overwith. I just started back at work. I am a veterinarian with an MPH from Johns Hopkins. I worked full time for the USDA on animal disease outbreaks (and sometimes peoople ones too, if a zoonotic disease) and part time at a clinic. I recently started a few shifts a month at the clinic and two days a week at USDA. I had gotten in to the foreign service and had to turn down my offer when I was diagnosed. Anyway, just trying to get my life in order again. My husband's family started a foundation called the Catalina Foundation. See catalinafoundation.org
it is now for young mothers with rectal cancer, but i am hoping it will expand and cover others with colon cancer. right now it is serving to help us but the plan is to do fundraisers and partner with other orgs. I got accepted to be a 2007 model so i am hoping to get the word out and use this foundation to provide education and awareness and partner with colon club and others. anyway, just wanted to introduce myself and let you know that i think what you are doing is great. What a trooper you are!!! I think I cannot do this again. but i guess we do if we have to. I am so glad you are using your experience to help others. I live in the DC area and would love to meet you when you come by. I tried to see what katie couric was up to on the today show this month for CRC awareness and could not seem to find anything.
Best to you.
Love,
claudia

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Claudia, Wow, what a time to have cancer enter your life. You had a beautiful baby to enjoy! I had my 3 of 4 in the breast chemo today, so I know how you feel about getting near to the end. I, too, work, and have some good days and bad days. I've learned to treat my body first, cause without my health, I'm nowhere.
Keep up the good work. There are so many people that need you, both inside your family and out!
I'm afraid you all in DC are going to be run over in September (19 and 20). Our 'invasion' is people from all over the US. Yes, I'd love to meet with you...I'm in California, and have never been there, so going to take weekend before or after or both to look around!
Kathi

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