Help with Info

PamPam2

Hi Everybody.

I am going to give a talk at Zane State College on early detection for colorectal cancer. I had my emergency surgery at age 45 for metastisized tumor.

Since the statistics are so outdated, and the guidelines and insurance recommends colonoscopy after age 50 I would like to use testimony from others like me, younger and not fitting into the statistics.

The guidelines for my speech are that I must use sources, and I thought, who better than we who have faced it, not a bunch of numbers and statistics from a book.

If you would like you can tell me things like age when diagnosed,or started having problems, if you were "put off" by doctors because "too young", or "young female", family cancer, symptoms, or anything else you think might be helpful to let people know they should be tested if they have symptoms, especially with family history of cancers.

I had my choice of topics to give a persuasive talk on, and I thought that if even one person who hears my speech needed tested and did so, it would be worth it.

Thanks
Pam

rrob

Early detection
Pam,

Feel free to use my information. At the age of 46, with no family history of colon cancer and being too young for routine screening, I was diagnosed with Stage IV colon cancer. I had no signs or warnings to raise a red flag, so by the time I was diagnosed, my prognosis was grim. Since colon cancer is easily treatable if caught early and a fairly slow growing cancer, one of my biggest regrets has been that I was not tested at the age of 40, when my survival chances would have been greater. It is so devastating to be given the news that your average life expectancy is 2 1/2 years when you didn't even know you were sick. I have been lucky and am currently NED, but I live with the fear that I will not see my sons graduate from college, marry, or have grandchildren. I live every day thankful that I am here, but I believe that age 50 for screening is leaving so many people vulnerable. My sons will be tested in their 20's and I encourage everyone I know not to wait. Remember the old television ad campaign that a mind is a terrible thing to waste? Well, I think it could apply to colon cancer and screening at age 50--a life is a terrible thing to waste. Looking at it purely from a cost-benefit analysis perspective, the cost of a colonscopy at age 40 and even again at age 45 vs. the cost of three surgeries and chemotherapy, follow-up scans, etc. is a no-brainer. Preventive costs are minimal compared to treatment costs.

Sorry for the long reply, but I feel strongly that too many people fall under the radar on this. Good luck on your speech!

Rebecca

PamPam2

rrob said:

Early detection
Pam,

Feel free to use my information. At the age of 46, with no family history of colon cancer and being too young for routine screening, I was diagnosed with Stage IV colon cancer. I had no signs or warnings to raise a red flag, so by the time I was diagnosed, my prognosis was grim. Since colon cancer is easily treatable if caught early and a fairly slow growing cancer, one of my biggest regrets has been that I was not tested at the age of 40, when my survival chances would have been greater. It is so devastating to be given the news that your average life expectancy is 2 1/2 years when you didn't even know you were sick. I have been lucky and am currently NED, but I live with the fear that I will not see my sons graduate from college, marry, or have grandchildren. I live every day thankful that I am here, but I believe that age 50 for screening is leaving so many people vulnerable. My sons will be tested in their 20's and I encourage everyone I know not to wait. Remember the old television ad campaign that a mind is a terrible thing to waste? Well, I think it could apply to colon cancer and screening at age 50--a life is a terrible thing to waste. Looking at it purely from a cost-benefit analysis perspective, the cost of a colonscopy at age 40 and even again at age 45 vs. the cost of three surgeries and chemotherapy, follow-up scans, etc. is a no-brainer. Preventive costs are minimal compared to treatment costs.

Sorry for the long reply, but I feel strongly that too many people fall under the radar on this. Good luck on your speech!

Rebecca

Thanks
Thanks Rebecca
Not too long at all. Just the type of story I think will touch people. A lot like my story. History of lung, but no colon ca in my family, had symptoms for several years, treated for irritable bowel-diverticulitis, until bowels totally obstructed by tumor, that had went through colon wall, engulfed overy and in 3 lymph nodes. I agree, the cost of a colonoscopy and getting it early would have been a lot different than what we have been through, not to mention all the subsequent surgeries, chemo. and so on.
Again Thanks
Pam

Monicaemilia

I fit that description...
Hi Pam: After years and years of going to the doctor and being asked the same questions, blood in your stool? Sometimes. Is it bright red or dark? Bright red. Any history of cancer in your family? An aunt with leukemia and my grandfather dx'd with CRC at 92. Diagnosis, you are too young and have no family history of CRC, therefore must be hemorrhoids. I had just turned 38 and was eight months pregnant when I was diagnosed only because my bowel perforated. It still took six weeks to truly diagnose me because the doctors thought the perforation was just a fluke, until I reported that as I still had blood coming out of my colostomy, we could hardly blame that on a hemorrhoid. In the end, I was diagnosed with Familial Adenomatous Polyposis (FAP), a genetic condition where over a hundred polyps line up the large bowel, and will turn cancerous by late 30s, early 40s. Apparently I have had polyps since I was a teenager, and only God knows if things could have been different. I DO know that things will be done very differently for my 3 year old. I think the biggest lesson about prevention is that your body inevitably will give you a warning, and one must follow one's instinct until fully satisfied. I think I always knew something was wrong, but preferred the doctors' version. They are the experts, aren't they? Monica

PhillieG

My Experience
Here's the short story:
Dx Feb 25, 2004. Stage IV colon cancer. Age 46
Had yearly checkups for 10 years by my PCP who was an oncologist too (fancy that) and he missed it. I had no symptoms at all, my tumor was one that did not block the passageway but instead hugged the wall so to speak. No family history of cancer, period.
Still pissed at my doctor. Funny thing, I have not seen him in over 5 years. He dragged his feet after my dx, he said that they were not able to install my port at this time, nor could we start chemo or basically do anything. Then, my brother took charge. He called and got me set up to have the port installed, I had it installed the next day. Then he called the hospital to see if they had the chemo and room for me, they did. He was back and forth with the doctors office and staff and would not take NO for an answer. My brother did such a great job that the doctor actually called my house to tell me to tell my brother to knock it off. I told the doctor that he could take a hike and I went to Sloan Kettering and paid for consultations out of pocket and found a "real" doctor who agreed to take a back seat and follow the recommendation of my oncologist at Sloan.

Funny thing, my old PCP doctor seems to have 'found' me again. He keeps sending me letters saying it's time for my annual checkup. It's been 5 years. I want to call him to tell him to go to hell and to stop sending me his f-ing letters. Am I mad at him??? Nah.

So, under the care of SK, I did 6 months FOLFOX/Avastin, then in Sept 04 minor operation on colon, 60+% of liver removed, hepatic pump installed, gallbladder removed along with a few lymph nodes.
Around late Nov or early Dec 04, back in for bowel obstruction fix.
More chemo, FUDR(?), CPT11, 5FU (gotta love that name) for 6 - 9 months or so.
Stared Erbitux CPT11 in about Oct 05, 1st lung operation on right lung around March of 06.
More Erbitux CPT11, second lung operation, both lungs, April or May of 07.
RFA in Sept 07 for one lung met.
More Erbitux CPT11 up until June of 08, last lung operation on right side in July 08.
Guess what? More Erbitux CPT11, still on that. Just went to Erbitux around January 09.
I am maxed out on lung operations. Too much scar tissue.
Still have some mets in my lung(s) but things look stable.
Not NED at any point yet...

email me if you have any other questions Pam
-phil

snommintj

PhillieG said:

My Experience
Here's the short story:
Dx Feb 25, 2004. Stage IV colon cancer. Age 46
Had yearly checkups for 10 years by my PCP who was an oncologist too (fancy that) and he missed it. I had no symptoms at all, my tumor was one that did not block the passageway but instead hugged the wall so to speak. No family history of cancer, period.
Still pissed at my doctor. Funny thing, I have not seen him in over 5 years. He dragged his feet after my dx, he said that they were not able to install my port at this time, nor could we start chemo or basically do anything. Then, my brother took charge. He called and got me set up to have the port installed, I had it installed the next day. Then he called the hospital to see if they had the chemo and room for me, they did. He was back and forth with the doctors office and staff and would not take NO for an answer. My brother did such a great job that the doctor actually called my house to tell me to tell my brother to knock it off. I told the doctor that he could take a hike and I went to Sloan Kettering and paid for consultations out of pocket and found a "real" doctor who agreed to take a back seat and follow the recommendation of my oncologist at Sloan.

Funny thing, my old PCP doctor seems to have 'found' me again. He keeps sending me letters saying it's time for my annual checkup. It's been 5 years. I want to call him to tell him to go to hell and to stop sending me his f-ing letters. Am I mad at him??? Nah.

So, under the care of SK, I did 6 months FOLFOX/Avastin, then in Sept 04 minor operation on colon, 60+% of liver removed, hepatic pump installed, gallbladder removed along with a few lymph nodes.
Around late Nov or early Dec 04, back in for bowel obstruction fix.
More chemo, FUDR(?), CPT11, 5FU (gotta love that name) for 6 - 9 months or so.
Stared Erbitux CPT11 in about Oct 05, 1st lung operation on right lung around March of 06.
More Erbitux CPT11, second lung operation, both lungs, April or May of 07.
RFA in Sept 07 for one lung met.
More Erbitux CPT11 up until June of 08, last lung operation on right side in July 08.
Guess what? More Erbitux CPT11, still on that. Just went to Erbitux around January 09.
I am maxed out on lung operations. Too much scar tissue.
Still have some mets in my lung(s) but things look stable.
Not NED at any point yet...

email me if you have any other questions Pam
-phil

history
diagnosed at 34
had bleeding ulcer, dr recommended colonoscopy
Dr found ulcer also a large tumor
otherwise no direct symptoms of cancer
no family history of cancer
I do not have the colon cancer gene
Many Mets, liver, gall bladder, node, soft tissue involvement
another primary cancer in thyroid
2 primary cancers eliminated me from clinical trials
2-3 month prognosis
placed on folfox 6/avastin to extend life
qualified for surgery after above avg response
liver and colon resection, ileostomy
ileostomy takedown
folfiri/avastin
recurrence
folfox 6/avastin
liver resection
massive abscess
septic shock x 6
another abscess
stent in liver
another stent in liver
thyroid biopsy
left lobe involvement, putting preesure on both carotid and jugular
scheduled thyroidectomy

Shayenne

snommintj said:

history
diagnosed at 34
had bleeding ulcer, dr recommended colonoscopy
Dr found ulcer also a large tumor
otherwise no direct symptoms of cancer
no family history of cancer
I do not have the colon cancer gene
Many Mets, liver, gall bladder, node, soft tissue involvement
another primary cancer in thyroid
2 primary cancers eliminated me from clinical trials
2-3 month prognosis
placed on folfox 6/avastin to extend life
qualified for surgery after above avg response
liver and colon resection, ileostomy
ileostomy takedown
folfiri/avastin
recurrence
folfox 6/avastin
liver resection
massive abscess
septic shock x 6
another abscess
stent in liver
another stent in liver
thyroid biopsy
left lobe involvement, putting preesure on both carotid and jugular
scheduled thyroidectomy

My.....
Mother died at age 40 from Leukemia, I was only 16. My father died of colon cancer at age 46, just 5 years later, that was in 1981 for my mom, 1986 for my dad. Of course they didn't catch my dad till he felt so much pain, he finally called an ambulance, and it was end-stage, where all they did was put him on a morphine drip, he was dead within a couple weeks, back in 1981, there was nothing to treat leukemia, they tried blood transfusions back then, they didn't have bone marrow transplants like they do now. Treatment back then was minimal.

I asked my gynocologist if I should get a colonoscopy, and she said no, I didn't need one till I was 50! well, at age 43, in January of this year, I was diagnosed with Stage 4 CC with a tumor in the liver. I turned 44 in February, and was horrified that I had no symptoms, or didn't even feel sick, that I was a Stage 4...I just gained weight is all, and since there was a weird feeling in my belly, a bit of a "hardness" that I wanted to get checked, that's when the dr. took the x-rays and told me I had cancer. I still don't even feel sick, I feel tired, but not in any pain or sick or anything.

I do believe the ages should be changed as well to get tested in the 30's! the dr told me that my kids should all start getting checked in their 30's, and I told them that. My husband I wish would get checked, he has colon cancer that runs in his family, and I know he has some bowel problems, I always see him taking laxatives, and I keep telling him he needs to get checked NOW! but he hates going to the doctor...his brother even has hemorrhoid and bowel problems, and he doesn't even get checked! I wish they both would get to the dr's, and just get it done.

kimby

Pam
I just got home from speaking on this exact topic!

I was diagnosed at 43 when the tumor ruptured the colon wall. No symptoms, no family history of colon canzer. At the time, I was 4 1/2 years out from uterine (endometrial) canzer. What I didn't know and my gyn/onc never told me is that in young women there is a link that put me at higher risk for colon canzer. In all fairness though, the screening guidelines do not indicate that I should have been screened any younger even though I was at increased risk. I live in NW Ohio where the diagnosis of stage IV colon canzer in people under 50 is 3 times the national average. Again, that doesn't change the recommended guidelines. I'm stage IV with mets to the liver and celiac lymph nodes.

Good luck with your speech.

Kimby

kimby

Shayenne said:

My.....
Mother died at age 40 from Leukemia, I was only 16. My father died of colon cancer at age 46, just 5 years later, that was in 1981 for my mom, 1986 for my dad. Of course they didn't catch my dad till he felt so much pain, he finally called an ambulance, and it was end-stage, where all they did was put him on a morphine drip, he was dead within a couple weeks, back in 1981, there was nothing to treat leukemia, they tried blood transfusions back then, they didn't have bone marrow transplants like they do now. Treatment back then was minimal.

I asked my gynocologist if I should get a colonoscopy, and she said no, I didn't need one till I was 50! well, at age 43, in January of this year, I was diagnosed with Stage 4 CC with a tumor in the liver. I turned 44 in February, and was horrified that I had no symptoms, or didn't even feel sick, that I was a Stage 4...I just gained weight is all, and since there was a weird feeling in my belly, a bit of a "hardness" that I wanted to get checked, that's when the dr. took the x-rays and told me I had cancer. I still don't even feel sick, I feel tired, but not in any pain or sick or anything.

I do believe the ages should be changed as well to get tested in the 30's! the dr told me that my kids should all start getting checked in their 30's, and I told them that. My husband I wish would get checked, he has colon cancer that runs in his family, and I know he has some bowel problems, I always see him taking laxatives, and I keep telling him he needs to get checked NOW! but he hates going to the doctor...his brother even has hemorrhoid and bowel problems, and he doesn't even get checked! I wish they both would get to the dr's, and just get it done.

Donna
Donna,

That doctor really missed the boat! If your father was diagnosed at 46, current guidelines say you should have had your first colonoscopy at 36. Your insticts were right! I'm so sorry you didn't know that then. Because of my situation my 17 yr old has been scheduled for his first colonoscopy already and insurance has cleared it. Reading your story makes me feel like we all need to go to medical school just to keep ourselves alive...geesh!

Kimby

PamPam2

Shayenne said:

My.....
Mother died at age 40 from Leukemia, I was only 16. My father died of colon cancer at age 46, just 5 years later, that was in 1981 for my mom, 1986 for my dad. Of course they didn't catch my dad till he felt so much pain, he finally called an ambulance, and it was end-stage, where all they did was put him on a morphine drip, he was dead within a couple weeks, back in 1981, there was nothing to treat leukemia, they tried blood transfusions back then, they didn't have bone marrow transplants like they do now. Treatment back then was minimal.

I asked my gynocologist if I should get a colonoscopy, and she said no, I didn't need one till I was 50! well, at age 43, in January of this year, I was diagnosed with Stage 4 CC with a tumor in the liver. I turned 44 in February, and was horrified that I had no symptoms, or didn't even feel sick, that I was a Stage 4...I just gained weight is all, and since there was a weird feeling in my belly, a bit of a "hardness" that I wanted to get checked, that's when the dr. took the x-rays and told me I had cancer. I still don't even feel sick, I feel tired, but not in any pain or sick or anything.

I do believe the ages should be changed as well to get tested in the 30's! the dr told me that my kids should all start getting checked in their 30's, and I told them that. My husband I wish would get checked, he has colon cancer that runs in his family, and I know he has some bowel problems, I always see him taking laxatives, and I keep telling him he needs to get checked NOW! but he hates going to the doctor...his brother even has hemorrhoid and bowel problems, and he doesn't even get checked! I wish they both would get to the dr's, and just get it done.

Your husband
Boy! If you weren't the perfect example for your husband to get himself checked! My dad was the same way, and I guess I was until I was in very bad pain. Do you think he might be afraid to get checked? or just stubborn? You would know him best, I guess most men don't do what we want them to by nagging at them, I wish I knew some way that you could get him to go to the doctor too. I was glad you got to the hospital when you had that perforation and it got taken care of OK. Thanks for the response to my post. I'm also trying to convince people that are having problems to go get checked, if something is wrong and caught early enough, it is a lot less to go through and less chance of it spreading. My hope is that your husband and his brother get themselves to the doctor, does he ever read these posts with you? Maybe that might help.
Pam

chynabear

Age 27 Stage III
You are welcome to use my story.

I was 23 the first time I noticed blood after a bm, maybe earlier than that, and I just wrote it off to something I ate. Anyway, when I was 23, I noticed some blood in the toilet. I remember back then, there were commercials about polyps and healthy eating and getting to a doctor if you had blood. Well, as hard as it was, I went to see the family doctor, nobody in my family even knew about this as it was so embarrassing. I was told that I had some internal hemorrhoids that were bleeding. I figured that the doctor knew best and was relieved that it was nothing serious.

Fast forward a few years after having few problems. It was August 2004 and I was 26. I passed quite a bit of blood after a bm and I wondered what I ate. I passed blood for a week, every day. Finally, my husband could tell something was bothering me. I burst into tears and told him that I thought something was seriously wrong with me. Mortified, I explained what had been going on. He was on the cell phone right away scheduling an appointment with the local doctors’ office.

The doctor was over 45 minutes past my scheduled appointment time. He was rude and acted like I was wasting his time. He quickly told me that I had hemorrhoids or possible a tear in my bowel. He suggested a hot bath and some suppositories. I told him I didn't think that I could do the suppositories and he shrugged me off like it was my only choice. As he's rushing out the door, I'm crying my eyes out begging him to listen to me and trying to get through to him that I thought something serious was wrong with me. I felt violated, embarrassed, and dismissed.

As my husband was in transition career wise, I knew that we would be visiting my in-laws soon since that was where my husband would complete most of his training. I figured I would see what happened and see my mother-in-laws doctor. Nothing happened for a while. Then it started again. I scheduled an appointment right away. I was seen by a young, brand new doctor, who explained that it could be anything, but to be sure I would have to have a colonoscopy. I was scheduled for my 27th birthday, 10/4/04. Happy Birthday, a large polyp was snared, but he didn’t think it was cancerous because it was made of healthy tissue and all tissue surrounding it was healthy.

I got the call the next day… you have cancer. I was scheduled for surgery on 10/08/04. I found out before I left the hospital that the cancer had advanced to a lymph node (1 of 5 removed). My regret is not learning enough before surgery and not insisting on CT or PET/CT to see if it had advanced, I didn’t know any better.

My entire journey I was told that I had nearly zero risk factors. I was too young to have cancer, but I did. Well, you have cancer, but it must be in the early stages, yet it wasn’t. They were wrong on all accounts. I was told that I likely had cancer for five years before I was diagnosed. Fancy that.

There are too many people being diagnosed at advanced stages of colorectal cancer below the age of 50. It needs to stop. I hope this helps and I’m sorry if it is too long.

Tricia

Shayenne

kimby said:

Pam
I just got home from speaking on this exact topic!

I was diagnosed at 43 when the tumor ruptured the colon wall. No symptoms, no family history of colon canzer. At the time, I was 4 1/2 years out from uterine (endometrial) canzer. What I didn't know and my gyn/onc never told me is that in young women there is a link that put me at higher risk for colon canzer. In all fairness though, the screening guidelines do not indicate that I should have been screened any younger even though I was at increased risk. I live in NW Ohio where the diagnosis of stage IV colon canzer in people under 50 is 3 times the national average. Again, that doesn't change the recommended guidelines. I'm stage IV with mets to the liver and celiac lymph nodes.

Good luck with your speech.

Kimby

Kimby and Pam...
I have no idea how to get these guys to see a Dr! They are so stubborn, and I think they are just really fearful that something may be found. Their mother is also needing to get checked, and she told me she was going to try and get Wes to go, he is 38 now, and too see him taking the laxatives, and having bowel problems is scary to me. I didn't have any of that, but have cancer anyway, and told him, how is he going to care for me if he can't take care of himself, I am here to care for him as well. I know he's scared, but I'm going to do my best to get him to the dr's!

I live in SE Ohio, and alot of people have been diagnosed with cancers here as well, it must be the environment, very strange, lots of people lately have been getting ill all at once, young people as well. We really do need to get our kids screened early, I'm all for that!

Hugsss!
~Donna

lisa42

my story
Hi Pam,

You may use my info.
My story:

Diagnosed at age 41 as stage IV rectal cancer w/ numerous mets to liver and both lungs- considered "not a surgical candidate due to too many widespread mets".
-Had gone to PCP 5 years before diagnosis due to blood in stools. Was told it was hemorroids. It probably was, but I think it was more. I lived with blood in my stools most of the time & it never occurred to me it could be anything other than hemorroids.

-Experienced a major bleeding incident- felt the need to run to the bathroom- didn't make it in time- discovered it was not feces, but mostly blood and blood clots. Scared me to death- made appt. w/ PCP. PCP not available for 3 weeks, so had appt. w/ nurse practitioner instead.
Nurse practitioner explained to me that "sometimes hemorroids can burst, and that is most likely what was experienced." She then proceeded to give me a rectal exam where she told me she "felt a very large hemorroid". I realized later, after my diagnosis, that she had actually felt my low rectal tumor and had mistakenly called it a large hemorroid! (I don't know how, as my tumor was very hard and unlike a typical hemorroid).
-I wasn't taken seriously, I believe, because I was 40 yrs old at the time, had no family history of any kind of cancer, was reasonably physically fit, hadn't been losing weight (I had actually tried to drop 10 lbs a few months beforehand and was not successful), didn't have constipation (I had diarhea, though, but was told constipation was the "normal" symptom for colon cancer), and I appeared fairly healthy and energetic.
I told her I thought I needed a colonoscopy just to be sure & so she consented somewhat hesitantly.
-I then began to feel better in the days that followed that appt, and so because of what the nurse pract. told me, I put off my colonoscopy for 3 more months because I thought I was probably just being a hypochondriac, which is how the nurse pract. made me feel (I finally scheduled the colonoscopy after another bleeding incident where the entire toilet bowl was filled with blood).
-Colonoscopy finally done- large low-lying tumor found.
-Sent to another hospital where they had capability of doing a sigmoidoscopy with ultrasound. The ultrasound apparently showed the tumor had grown through the bowel wall, but nothing was seen in the lymph nodes, so I was diagnosed then as stage II.
-CT scan was done 2 days later as "routine- nothing was expected to be seen since nothing showed up in the lymph nodes".
CT scan results surprised and dismayed all doctors- I jumped to a stage IV immediately since CT showed numerous mets in liver and both lungs. When I asked my doctors how it could be in the liver and lungs if nothing showed up in any lymph nodes, I was told that "in rare cases, especially in rectal cancer,the cancer can metastasize directly through the blood and bypass the lymphatic system." Apparently that must have been my case. Nothing in me ever showed up in my lymph nodes until my recurrence in my lungs, which was exactly a year after my diagnosis.
-Longer story shortened- went through chemo, radiation, surgery, recurrence, more chemo, and am currently doing maintenance chemo.

-I still get angry when I hear the doctors are still "blowing off" their patients' symptoms due to their age, lack of family cancer history, and/or lack of all the "right" symptoms. All doctors should be required, in my opinion, to refer patients for a colonoscopy upon any evidence or complaints of rectal bleeding! Rectal bleeding can be due to reasons other than cancer, but no one will know unless the colonoscopy is done! Colonoscopies can also show other ailments as well as cancer, such as colitis, Chron's disease, etc.
Bloodwork (including a CEA level in addition to the usual CBC's) and a fecal blood occult should always be done immediately, as well!
I've heard of too many patients being told by their doctors that there's "no reason" to perform a colonoscopy due to their age, lack of "enough" symptoms, etc. I personally believe that a "baseline" colonoscopy should be done around age 35, just like insurance now allows a baseline mammogram to be done in the 30's prior to the currently recommended age of 40 (which is far too late for that, too- I know of people who have died from breast cancer in their mid 30's and I know of many, many people who have gotten colorectal cancer in their 30's and 40's and some even younger than that). Colorectal cancer screenings need to be changed to recommend fecal blood occult be done annually after age 30 and I think a "baseline" colonoscopy should be done in the 30's and then regularly starting at age 40, not age 50!

Good luck with compiling all your stories!!

Lisa42

kmygil

Okay
For some reason, even though stomach, colon, bladder, uterine and kidney cancers were all over the family history, no one ever made a genetic connection. In hindsight it seems like a "duuuuhhhhh," but not until I was diagnosed did we do the genetic test & found that my mother's line is infested with HNPCC (hereditary non-polyposis colon cancer.) I was dx'd at age 49 after a colonoscopy which was recommended by my GP. This only came about because I was seeing her for depression which settled in after my mother's death from colon cancer 2 years prior. When she went over the family history she referred me to a GI doctor for a colonoscopy. My insurance company did not want to pay, but the GI doc told them it was a medical necessity, so they paid. Sure enough, I had it. HNPCC carries colon, stomach, endometrial, bladder, kidney and some brain cancers. So if there is any family history, especially of first degree relatives, GET A COLONOSCOPY!!!!!!

And that's all I have to say about that:-)

Kirsten

PamPam2

Thanks Everybody
Thanks everyone who has contributed so far, some very good information and points of views, it will help to have more than just my own story.
Pam

dorookie

PamPam2 said:

Thanks Everybody
Thanks everyone who has contributed so far, some very good information and points of views, it will help to have more than just my own story.
Pam

not only our stories
but say what gets their attention. Insurances will say so much more if they allowed the colonoscopy at an earilier age, then to let it become cancer and have to pay for all those bills that come with having cancer. Its a win win situation, we get screened earlier and they save a butt load of money.....

I was DX at 38, no family history, just some blood in my stool, had stage 3, had surgery, chemo radiation, more chemo, it was all clear for about 6 months then it came back, now stage 4, fighting again.

God Bless
Beth

PamPam2

Just a bump

Just a bump

jenben59

snommintj said:

history
diagnosed at 34
had bleeding ulcer, dr recommended colonoscopy
Dr found ulcer also a large tumor
otherwise no direct symptoms of cancer
no family history of cancer
I do not have the colon cancer gene
Many Mets, liver, gall bladder, node, soft tissue involvement
another primary cancer in thyroid
2 primary cancers eliminated me from clinical trials
2-3 month prognosis
placed on folfox 6/avastin to extend life
qualified for surgery after above avg response
liver and colon resection, ileostomy
ileostomy takedown
folfiri/avastin
recurrence
folfox 6/avastin
liver resection
massive abscess
septic shock x 6
another abscess
stent in liver
another stent in liver
thyroid biopsy
left lobe involvement, putting preesure on both carotid and jugular
scheduled thyroidectomy

my goodness, snommintj.
You have gone through a lot. I didn't realize just how much until you listed it, and at such a young age. Did you have any symptoms that you had such advanced colon cancer? I was diagnosed stage 3c in December, but no symptoms until solid foods caused pain, but I could drink my Coke and drink my strong coffee with no problem, so I thought I had a bacterial infection, went to a doctor, gave me a colonoscopy, thought it was diverticulitis, had surgery and found stage 3c cancer. Although this is my first round of chemo for 6 months, I'm praying for a cure. Thank you for sharing, it makes me feel blessed...there are others in far dire straits than I. I truly wish you the best, you deserve it.

jenben59

I'm behind you 100%!
Until I was diagnosed, I never even thought about having a colonoscopy. No symptoms, no pain, healthy after brain tumor. I always thought it was for "old people". I thought I was to young to have this, but after joining this site and reading about people so young with this disease just blew me away...you don't read about it in the news paper, on the Internet or on the news. I believe this should be like an annual doctors visit to the gynocologist, insurance pays for that! Insurance companies must be informed/taught that if this cancer is found early, IT WILL SAVE THEM MONEY! Then maybe they'll change their tune about testing. Thanks for standing up for this issue. Let me know if I can do anything.

PamPam2

jenben59 said:

I'm behind you 100%!
Until I was diagnosed, I never even thought about having a colonoscopy. No symptoms, no pain, healthy after brain tumor. I always thought it was for "old people". I thought I was to young to have this, but after joining this site and reading about people so young with this disease just blew me away...you don't read about it in the news paper, on the Internet or on the news. I believe this should be like an annual doctors visit to the gynocologist, insurance pays for that! Insurance companies must be informed/taught that if this cancer is found early, IT WILL SAVE THEM MONEY! Then maybe they'll change their tune about testing. Thanks for standing up for this issue. Let me know if I can do anything.

jenben
Yes you are right. There is very little media coverage for CR cancers. It seems like it is even one of the last things even doctors think about when you have symptoms. Maybe when Farrah Fawcet has her program on TV this month the media may get more interested. It seems like CR cancers are becoming more and more prevelent in younger and younger people, for whatever reasons, I think a lot of it is environmental, everything we eat is treated in some way, whether it is when the crops are growing, the drugs and chemicals they use for livestock, and the preservatives and chemicals added to foods, and the household chemicals we use, what's in our water, down to the plastics our foods and drinks come in. You are right, the cost of a colonoscopy and removing pre-cancerous polyps is a drop in the bucket compared to the cost of treating cancer!
Pam

scouty

Good stuff Pam
I'm somewhat of a geek and really like numbers and where stats come from. I don't know if you have checked them out but there are some pretty great up to date (2009 projections) that you can see from this site. Go to the cancer.org tab on the left of this page, then click on cancer information. Once there you will see statistics on the left hand tab. Download the file (it will take awhile and does not get saved to your computer unless you want to) but you can see cancer specific data for the last 10 years broken down to a state by state level.

I use the data and charts (from the first 5 pages) the most for my talks. Other then the obvious I am lucky to be alive today mantra, I mostly try to scare the **** out of people (pun intended) to wake them up. I talk about some of the people I have met on this site that are not longer with us. The one that gets the most attention is when I talk of one of my dear friends that I lost last summer who went to her primary care doc at 51 with symptoms. He said it was menopause and prescribed antidressants. A year or so later she finally screamed loud enough to get a colonscopy and found out it was Stage III that eventually went to Stage IV. She fought very hard but lost and I personally would like to punch her primary care doc in the face!!!

I digress, but you can see in the stats that in the last few years more women than men are being diagnosed with colon and anal cancer. Ironically men still are dxed more often with rectal cancer. Being the abbynormal that I am, I am a rectal cancer survivor!!! Another stat I find interesting that I use all the time to women:

75% of the women that are going to hear they have cancer this year are going to find out it is a cancer OTHER than breast!!! 85% of the women that are going to die from cancer this year are going to die from a cancer OTHER then breast. That usually gets alot of attention. Another good one is more people will die from colorectal cancer this year then from breast cancer!!! I'd like to see some age breakdowns too since I suspect younger people are being dxed now more then ever and have asked for it on the site. (oh year another good thing ACS does for us).

March is colorectal cancer awareness month and I did see a few TV commercial sponsored by ACS (oops something else they spend their money on for us). I ran is a 5K with a "semi-colon team" of 20 to raise money and awareness sponsored by the colon cancer coalition. I learned from talking to the people setting it up as to what it takes to pull off a country wide 5K like "pink" does. It took "pink" years to get to that level and they now have a few employees in every city that has a race much like ACS does. I hope the Colon Cancer Coalition gets their too.

Some other stats you might find interesting (I know I do but I have a math minor). I googled and got global cancer statistics last year and found a site that had data on CRC for every country in the world. The results were very revealing to me:

All numbers are based on per 10,000 people. So if the number is 24 then on average that country would have 24 cases of CRC per 10,000 people.

The USA, Australia, and Canada all had rates very close 48-49 per 10,000. The NEXT closest country was a European country at 25 (almost half) and most of them were jewish men (I think I could figure that one out without charging zillions of dollars for research). Most of the other contries had half the occurences we do.

That got me to thinking, why would those 3 countries have twice the incidence rates as everywhere else in the world? The are only a few things I can find or thing of. I welcome others to shoot this down or add to the data as they seem fit.

1. Australia and Canada allow our meat and produce to be imported.
2. They also follow many of the same guidelines for meat and produce production/distribution that the USDA recommends.
3. Childhood vaccines are basically the same.
4. Obesity and Type II diabetes rates are pretty much the same, much higher than the rest of the world.

I am not trying to be preachy at all since I need to lose some pounds myself and am nothing close to perfect with diet but I do find this data to be fascinating and don't understand why someone else isn't looking into it.

I could go on and on with questions about this but won't bore y'all.

Again Pam, great topic!!!!