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PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

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Since the statistics are so outdated, and the guidelines and insurance recommends colonoscopy after age 50 I would like to use testimony from others like me, younger and not fitting into the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
Posts: 160
Joined: Nov 2007

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's picture
PamPam2
Posts: 376
Joined: Jan 2009

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's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

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's picture
PhillieG
Posts: 4912
Joined: May 2005

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's picture
snommintj
Posts: 602
Joined: Mar 2009

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's picture
Shayenne
Posts: 2370
Joined: Jan 2009

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's picture
kimby
Posts: 804
Joined: Oct 2007

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's picture
PamPam2
Posts: 376
Joined: Jan 2009

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

jenben59
Posts: 144
Joined: Jan 2009

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.

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

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

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

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

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

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

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

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
Posts: 881
Joined: Feb 2007

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's picture
PamPam2
Posts: 376
Joined: Jan 2009

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
Posts: 1736
Joined: Jul 2007

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's picture
PamPam2
Posts: 376
Joined: Jan 2009

Just a bump

jenben59
Posts: 144
Joined: Jan 2009

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's picture
PamPam2
Posts: 376
Joined: Jan 2009

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's picture
scouty
Posts: 1976
Joined: Apr 2004

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!!!!

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

After all that I forgot to say that I did not have a clue what a colostomy bag was until I woke up with one after emergency surgery. I spent 5 hours doing yard work and almost died in the hospital within a week after my perforated colon led to acute peritonitis. Spent 3 weeks there living off IVs and they still missed my cancer. We found it 4 months later after testing to have my tempy colostomy bag reversed/taken down. The smartest thing I did was follow my doctor brothers' advice to go the a comprehensive cancer center (longer drive but I truly believe that is the only reason this stage IV survivor is still alive). Heck I didn't know there was such a thing as a comprehensive cancer center, I was only 49 and healthy or so I thought.

I promise I will get off my soapbox now.

Lisa P

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Lisa,

I really appreciate reading all your info and statistics. With all the growing numbers of colorectal cancer, especially in the US, WHY do they not spend more efforts/research looking into PREVENTING it?? I know that's been the subject on a couple of other threads, but it just defies all logic to me! Of course treatments for it are still being very needed, but PREVENTING it should be getting huge amounts of research effort right now! Maybe it is by some, but it doesn't seem to be the case- why so many oncologists (mine included) still insist that our diet and other things we do and are exposed to has/have no effect on getting cancer, treating cancer, preventing recurrences, etc- it's maddening!!
Why the screening guidelines for CRC have recently been updated, but still tell people to "make sure to get a colonoscopy at age 50"- hello!! 50's way too late for so many of us!!

Thanks for standing on your soap box- more people need to do so and get into the faces of the cancer societies and the pharmaceutical companies and all oncologists and general practitioner doctors!!

Lisa42

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

I've met way too many Lisas on this site.......

New parents beware!!! Do not name your daughters Lisa, they will grow up to get CRC!!!! Just kidding of course but there are quite a few of us with the name (I can recall 8 over the years).

Thanks for your kind words and for reading the long post Lisa. But you have asked for an even longer one, Cheryl will have nothing on me with the length of this one!

I have no idea why prevention isn't discussed/researched more often but I can try to guess. Let's think of the impacts since we all know money talks in the US and probably the rest of the world too. As I see it (and please disagree if you or anyone else wants to) we (the USA) have gotten ourselves in a fine mess with some of our history and it feels like a vicious cycle to met that is going to take YEARS to break.

In the 1970s, products were introduced approved by the FDA that made food production cheaper, food taste better, and lenghten the shelf life of the product. Steroids, antibiotics, insectisides and nasty preservatives were approved for use to produce "better, but more importantly cheaper" products.

Steroids and antibiotics are given to meat producing animals (cows, chickens, turkeys, lamb etc.) so more animals would live and get bigger and better producing (more milk, more meat). Growth hormone steroids injected into a young cow add an additional 200 pounds to that cow very quickly. Cows are sold by the pound so a $6.95 injection brings 200 more pounds and at 99 cents a pound, that's a huge rate of return.........$200 for a $7 injection!!! The hormones given to milk cows allow for the cow to produce milk much sooner than it would normally and their life span is much shorter. BUT they produce more milk in that shorter life span, so that's why they do it. Just because your drinking milk is produced by a cow that has been shot up with hormones hasn't been proven to be harmful..........yet. They can do it, our government allows it.

The same goes for the poultry industry. Chickens and turkeys in the wild or free range raised look totally different than the ones raised on traditional chicken farms. I live where wild turkeys are around and I have NEVER seen one that was even close to white in color and none of them have that HUGE breast.

It is no surprise to me that "hormonal cancers" like prostate and breast have soared in a handful of countries in the last 20 years. Steroids will do that, ever wonder why they are not allowed to be taken by our athletes but we can injest them from our food chain? It's all about money.

There is not one single politician in office that will go after those industries, they'd never get reelected. I live in a state that has a huge hog and chicken industry and know that if I came out vocally about the industry and people actually listened, I would be harassed terribly and probably killed. I am very serious here, we are talking about the livelihood of many families that are just trying to survive within the boundaries presented to them.

Vegetation (fruits and veggies both) are sprayed with all sorts of things to keep the bugs and disease away. Once again everything they are doing is "legal" but it is slowly killing us.

So how do we change that? Stop buying the stuff if you can afford to. I can definitely say the cost of organic has dropped drastically the last few years as demand increases.

Next, research. I really should start another threat about it but won't make people ignore 2 posts.

Who does research? Places that are funded to do so; universities, research labs, and pharmaceutical companies. Where do they get the funding? From grants thru foundations, the government, and pharmaceutical companies are the ones that come to mind the quickest.
The universities and research labs all depend on grants or private funding to keep going until they can sell their "results". Taking something to a clinical trial cost big bucks and in my opinion the only way to get investors is for the investors to have a chance to make some money (DUH). THE only way the result will make money is if it is a product that can only be made synthetically (not natural or god made, human made) and then a pharmaceutical companies buys it, finishes the testing requirements, and then produces it. Let's say peanut butter is found by research to help impede the advance of cancer (this is total exageration people!!!!), that product is already in the marketplace and no one will make money off of it other than the ones that already do. Now let's say some university lab finds a way to add aspirin (a man made synthetic product that does good things) to the peanut butter and THEIR studies show it is more effective then the just plain PB is. They go get investors for testing until they get far enough along to sell the "enhanced PB" to a pharmaceutical company that will manufacture it and we will all get to see the commercials on TV. The original investors make a mint, the university gets great accolades and funding and everyone is happy. Does the enhanced PB really work, who knows until a few years pass and there are no lawsuits.

I bring that all up because let's say I'd really like to prove that cancer cells do feed on sugar or that sea salt is better for you than table salt. There is not money to be made on the end result so funding is tough and has to come from foundations or the government. The government funding for all research has been cut drastically the last several years so the only recourse are the foundations and lord knows they too have been cut drastically given the economic climate we are in this days here.

I know that's alot of info Lisa but bottom line, there is NO MONEY to be made off of prevention, a cure is much more valuable, especially if it is something that has to be taken by everyone (vaccine) or daily (recurring income). It is all about money, sad as that is.

From my work, I always tried to come up with a solution if I was bashing something. I never felt right complaining about something without providing a solution even if it was a lame one.

How do we change it? By reading labels and stop buying the crap that is made with things that are killing us, put your money where your mouth is per se. Donate money to non-profit orgs that might help in some of the "basic" research that needs to be done. NEVER believe a study done about man made things versus synthetic one that are funded by the synthetic product maker (DUH). Demand diet and other info from your docs. If you do not have any of the genetic CRC factors you are where I am with a "lifestyle" cancer. Like you I think we have one of the easiest to detect and prevent cancers there are and need to just talk about it every chance we get. I don't wish what I have gone thru on anyone, well maybe a few...........

That's plenty for now and I hope you don't get bashed for provoking me.

Lisa P.

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Thanks Lisa. Some really good sites and info. Will help a lot!
Pam

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi again Lisa P.,

Yes, there were a lot of Lisa's near my age when I was in school. My mom said she didn't know of any Lisa's before naming me- she actually picked my name from the soap she watched- there was a Lisa on "As the World Turns". Anyhow, before getting married, I was Lisa Smith & there were several of those around too- one who went to my orthodontist and jr high, then high school & another different Lisa Smith who apparently later went to my same college. Three stories on that... 1) As a teenager wearing braces, I went to the orthodontist one day & endured the usual 45 min. of getting the brackets, wires, whatever changed. When the Dr. came over to check the assistant's work, he double checked my chart and discovered she had been looking at the wrong Lisa Smith's chart. I had to endure getting the wires all taken off and redone! 2) I came home from school one day to find my mom beaming about the letter she had just opened, which informed her that I was chosen to be in the high school's honor society. I had to sadly inform her it must be for the other Lisa Smith, as I knew my grades didn't qualify for the honor society! (and I found out later the other Lisa Smith was frantic because she never received that letter she was expecting about it!)
3) When it came time for graduating with my bachelor's degree (from Cal State Fullerton in Orange County, CA)- I was informed that before I could graduate, I needed to take care of the money I owed the student health center and either return or pay for the numerous books that were long overdue from the school library. Well, I knew that I owed no money and didn't have any overdue library books. Although they went by student ID # for everything, they somehow still linked me to the other Lisa Smith with this too. I did get it solved and got to graduate, but it was definitely a pain!

I was glad to meet and marry a man with an unusual last name after being Lisa Smith- I'm now Lisa Didier (pronounced Dee-dee-ay) After 18 years of marriage and having telephone solicitors pronounce it all different incorrect ways, I am now sometimes missing having life with a more simple and common last name- LOL! (not really, though- I do like my married last name) :)

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

When I lived in Atlanta, there was another woman with my same name listed before me in the phone book. I'd had a couple of people tell me that they called her first and she was rude. Someone called me asking for her one day (she worked at Color-Tile I found out)and I looked her number up in the phone book and gave it to them (I kept her number by my phone). The woman was so appreciative thanking me so I asked her to tell her friend Lisa to try to be nicer to my friends. Never got a complaint again.

While living in Wash, DC. I used to get calls for a woman there with my same name almost 20 years younger than I was. Anyone who is familiar knows the city in divided into to quadrants and there are 4 1402 E Streets (NE, NW, SE, and SW, I would hate to work at the post office there). I lived in NE so was listed first in the phone book and used to get the recent Duke graduates' calls from Duke for her being late paying back her loans, guys she met at bars the night before, one even kept asking me out until I told him I was old enough to be his mother, but the clencher was 2 messages on my answering machine from her own son who apparently was living with the grandmother. The calls were so sweet of him missing his mommy, the second one had me in tears so I called her and gave her a piece of my mind on HOW COULD HER OWN SON NOT KNOW HER PHONE NUMBER!!!). We both ended up crying but I never got a call from that little guy again.

BUT the best one is again from Atlanta. I was home recouping from my first hint of CRC issues, a hemorrhoidectomy when the phone rings. It is a woman asking for Lisa, once we realized she had the wrong one, she got kind of weird saying things like he one time and then she until she started saying he/she. Turns out it was a drag queen that's stage name was the same as mine but his "given" first name was Lee. It was like something you see on TV and we never found his number. About a week later Lee called and we had a BIG laugh about it and I ended up going with work friends to see one of his shows after I recovered and had gone back to work,of course. We had an absolute blast and I can absolutely tell you that the 10 folks that were brave enough to go with THEIR boss to that show could tell you every minute about it today and that was in 1986, I sure do.

Thanks for making me remember those thoughts Lisa!!!!

Pam is probably saying WHY ARE THESE PEOPLE HIJACKING MY THREAD!!!!

Sorry Pam and again I really like this thread topic.

Have a great weekend and HAPPY MOTHERS DAY EVERYONE!!!!

Lisa P.

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Hey, No problem, keeps it coming back to top and maybe I'll get some more replys. And that's a very funny story, enjoyed hearing it.
Pam

taraHK
Posts: 1961
Joined: Aug 2003

My very brief story but I hope it might be helpful:

I was diagnosed at age 44. No risk factors (i.e. no family history. I eat tons of fruit and vegetables, little red meat, exersise regularly).

I had blood in my stool once. Went to general doctor. Luckily, he referred me right away to a specialist. I was diagnosed with Stage III rectal cancer.

That was 6+ years ago. I've had a few recurrences but I'm alive and have already "beat the odds" in terms of stats that were floating around at the time of my diagnosis for my stage.

Tara

Julie 44
Posts: 479
Joined: Oct 2008

I started having cramps one day..Thought they were related to my period..They were getting worse and worse..Went to doctor..Did a pelvic exam and saw nothing..Did a CAT scan and said you need to go to the hospital now!!!! I had a large tumor that was blocking my colon....The only thing that saved my life was that there was a small pencil hole in the tumor just enough to let some feces through otherwise I could have died from Septic shock syndrom...Had the tumor removed along with 10 lymph nodes which 9 were positive...I stared treatment a month later..After 6 monthes of treatment I am DONE!!!!! My CEA test came back good and going to have a colonoscopy this Friday...I am 44 years old and no other health issues..I had lost 144lbs (had lap band surgey) exercised 6 days a week and was in the best health ever in my life..Then I had cancer...The doctor said this was probably growing in me for atleast 10 years if not more...So if I had screening earlier in life I might not have had to go through all of the pain and suffering I did...Good luck with your speech..I think its a great idea to get people more aware of early screening...Keep up the great work and thank you for doing it...Julie

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