Hi, I am new to the site. I heard about you from an article about the colonder in the Democrat and Chronicle in Rochester N.Y. I was diagnosed in September with stage 3 colon cancer. I'm not as young as many of you 48, but had the same experience with my primary Dr. I was told repeatedly hemorroids were causing my symptoms and I was not "indicated" for a colonoscopy until 50. I finally won a screaming match and got her to write the referral. Looking back now I can identify several years of symptoms that were attributed to ovarian cysts that were actually my tumor. My daughter, who is 23 is having a colonoscopy next month, just to ease my mind.
I had a resection of my sigmoid which revealed 7 out of 19 positive nodes. I've had a CAT scan that revealed what could be another lymph node near my aorta, then a pet scan that was inconclusive.(it showed some uptake but it didn't look like a typical "hot" spot). That technically makes me a stage 4 so my Dr. will now add Avastin to my FOLFOX treatment. I started chemo last week and so far so good. A little nausea for a day or two. I have a port and I am using the portable pump. That is my story.
I was wondering if anyone knows about vaccines for colon cancer. I also would appreciate any info people might have about experiences with genetic testing. I've been told my insurance probably won't cover it because I don't have a strong family history, but I have lots of "missing" information in my family history so I want try to fight that somehow. Livestrong Sue
new to messageboard from Rochester N.Y.
Hi Sue,
I, like you, am no spring chicken and was diagnosed a couple days before my 49th birthday. For my 50th birthday I received a clean PET scan and ended a year of chemo. What a gift! I was diagnosed stage III c.
My family has been fighting for genetic testing. Fifteen years ago my oldest sister was the first to be diagnosed. About 9 months before my diagnosis my brother was diagnosed....he is 2 years older then me. I have had one doctor tell me she was interested in the testing but no follow through. With no insurance at the time of diagnosis I am in the state hospital system. My surgeon was the one interested in the genetic testing....haven't seen her since last year though. None of the oncologist's I see show any interest what so ever in it. My brother looked into it and he is making headway. The thing is it has to start with the person with cancer. I have another sister who hasn't been sick, she looked into it and they told her she couldn't be the start....one of us with the diagnosis has to start....then the rest would come into play.
My husband just recently went to a doctor that agreed to send my 3 daughters to a specialist that will do a colonoscopy on them. They have all been to their regular doctors and been told they are too young for cancer or a colonoscopy. You have to wonder, how much cancer has to exist in a family before bells start going off in their head. Three out of six siblings seems to be a red flag. We did manage to trace back to an uncle that died from colon cancer but that was so long ago. I worry for my girls though.....surgeon told me I had probably been carrying that tumor around for about 8 years.
Anyway, welcome to the colon club. I wish I had found this place sooner. Hope your chemo is going well. Keep the warm gloves and socks close. When I was on fulfox I wore gloves pretty much 24/7. If you need anything, let us know. I'll be praying for you Sue!
Mary
I, like you, am no spring chicken and was diagnosed a couple days before my 49th birthday. For my 50th birthday I received a clean PET scan and ended a year of chemo. What a gift! I was diagnosed stage III c.
My family has been fighting for genetic testing. Fifteen years ago my oldest sister was the first to be diagnosed. About 9 months before my diagnosis my brother was diagnosed....he is 2 years older then me. I have had one doctor tell me she was interested in the testing but no follow through. With no insurance at the time of diagnosis I am in the state hospital system. My surgeon was the one interested in the genetic testing....haven't seen her since last year though. None of the oncologist's I see show any interest what so ever in it. My brother looked into it and he is making headway. The thing is it has to start with the person with cancer. I have another sister who hasn't been sick, she looked into it and they told her she couldn't be the start....one of us with the diagnosis has to start....then the rest would come into play.
My husband just recently went to a doctor that agreed to send my 3 daughters to a specialist that will do a colonoscopy on them. They have all been to their regular doctors and been told they are too young for cancer or a colonoscopy. You have to wonder, how much cancer has to exist in a family before bells start going off in their head. Three out of six siblings seems to be a red flag. We did manage to trace back to an uncle that died from colon cancer but that was so long ago. I worry for my girls though.....surgeon told me I had probably been carrying that tumor around for about 8 years.
Anyway, welcome to the colon club. I wish I had found this place sooner. Hope your chemo is going well. Keep the warm gloves and socks close. When I was on fulfox I wore gloves pretty much 24/7. If you need anything, let us know. I'll be praying for you Sue!
Mary
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Terry
Spring Chickens
Hi Sue,
I was 49+ when I filled up the toilet with blood. That got me a colonoscopy and my tumor was found....Stage 1. I was lucky as I had an internal timebomb that had not exploded. My Mom had colon cancer (stage 1) at the age of 72. I was on schedule to get the test at 50, but my body told me otherwise. Fortunately the amount of blood and my hemoglobin count told my doctor that it wasn't hemmroids. My 25 year old daughter had a tiny amount of rectal bleeding last spring and her doctor, knowing of the family history, ordered the test. No polyps, just a few fissures in the recturm. The problems seems to be that when no family history exists, doctors simply look for the simpliest diagnosis and try to make it float. Meanwhile, a simple ployp changes and the complications set in.
Incidentally, I am now 56, and cancer free. I've had 3 post operative colonscopies since 1999 and all have been clear. I am now on the 5 year cycle and that's about as good as it gets!
I wish you great health and a full recovery. This site is a part of my life and it serves to remind me of my obligation to get out the message whenever possible.
Best wishes,
Terry Miller
I was 49+ when I filled up the toilet with blood. That got me a colonoscopy and my tumor was found....Stage 1. I was lucky as I had an internal timebomb that had not exploded. My Mom had colon cancer (stage 1) at the age of 72. I was on schedule to get the test at 50, but my body told me otherwise. Fortunately the amount of blood and my hemoglobin count told my doctor that it wasn't hemmroids. My 25 year old daughter had a tiny amount of rectal bleeding last spring and her doctor, knowing of the family history, ordered the test. No polyps, just a few fissures in the recturm. The problems seems to be that when no family history exists, doctors simply look for the simpliest diagnosis and try to make it float. Meanwhile, a simple ployp changes and the complications set in.
Incidentally, I am now 56, and cancer free. I've had 3 post operative colonscopies since 1999 and all have been clear. I am now on the 5 year cycle and that's about as good as it gets!
I wish you great health and a full recovery. This site is a part of my life and it serves to remind me of my obligation to get out the message whenever possible.
Best wishes,
Terry Miller
Wow
We are as young as we feel! Please send your specific questions about genetic testing to me and I will try to assist you in any way I can. I have been comprehensively tested and will happily share.
This holiday season, I wish you a long, blessed life and holiday cheer throughout the year!
This holiday season, I wish you a long, blessed life and holiday cheer throughout the year!
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Guest
Thanks all. I am so happy I found this site. Thanks for all your encouraging words. I really appreciate hearing from you and your well wishes. Back at you. God bless.
Holly,
I am still in the process of investigating all this. My oncologist has someone on staff who is a genetic counselor. She took my history. She told me the next step is to have a blood sample sent to (Utah?)Then they will tell me if my insurance will cover testing. I know you can't tell me specifics for my case, but I would be interested in any experiences you may have had and how it all turned out for you.
I am wondering if it turns out I DO have one of the genes:
1.Will my insurance be able to cancel me? Can it exclude me from ever getting insurance on my own?(right now it is through my employer)
2. Will my kids be able to have regular screening? (covered by insurance)
3. How will my screenings differ? More frequent? I got the impression that they would be.
I won't do anything with any of this until my chemo is finished. I guess they need an "unaltered" blood sample. Thanks for your help. Sue
Holly,
I am still in the process of investigating all this. My oncologist has someone on staff who is a genetic counselor. She took my history. She told me the next step is to have a blood sample sent to (Utah?)Then they will tell me if my insurance will cover testing. I know you can't tell me specifics for my case, but I would be interested in any experiences you may have had and how it all turned out for you.
I am wondering if it turns out I DO have one of the genes:
1.Will my insurance be able to cancel me? Can it exclude me from ever getting insurance on my own?(right now it is through my employer)
2. Will my kids be able to have regular screening? (covered by insurance)
3. How will my screenings differ? More frequent? I got the impression that they would be.
I won't do anything with any of this until my chemo is finished. I guess they need an "unaltered" blood sample. Thanks for your help. Sue
Sue,
I was diagnosed with stage IV colon cancer last year when I was 36. I’ve had a few surgeries and 6 months of chemo, and things are looking good. If you get nothing else from the Colon Club, always keep with you the idea of how many survivors there are out there.
I went for genetic counseling. My mother’s family had at least 4 cases in the two generations ahead of me. My councilor pretty much took care of all the insurance stuff. My coverage, through work, covered most of it. I don’t believe that if you are already covered, they can drop you. I have heard, however, that once you’re diagnosed with cancer, it becomes more difficult to get any new coverage or additional life insurance. I was denied long term disability through my insurance company because I had not applied for it until I was diagnosed.
Good luck!
Billy
I was diagnosed with stage IV colon cancer last year when I was 36. I’ve had a few surgeries and 6 months of chemo, and things are looking good. If you get nothing else from the Colon Club, always keep with you the idea of how many survivors there are out there.
I went for genetic counseling. My mother’s family had at least 4 cases in the two generations ahead of me. My councilor pretty much took care of all the insurance stuff. My coverage, through work, covered most of it. I don’t believe that if you are already covered, they can drop you. I have heard, however, that once you’re diagnosed with cancer, it becomes more difficult to get any new coverage or additional life insurance. I was denied long term disability through my insurance company because I had not applied for it until I was diagnosed.
Good luck!
Billy
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Molly
- Site Admin
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- Contact:
Sue-
The way I look at it, I'm already high risk (dx at 23), whether I carry a gene or not, so I wasn't planning to get tested. I did finally end up going through with it through a study at NCI (more because I wanted to be able to explain it to anyone who asked). Everything was confidential through that particular study, so there was no real risk of the insurance company giving me trouble if it came back positive...which was my biggest concern. When I did ask about that, however, I was told that TODAY the insurance company cannot deny you coverage if you carry a gene, but that's not to say that it wouldn't happen in the future.
If you really want to have the test done, you should. But don't let anyone pressure you into it. Your kids (if you have them) should get their colonoscopies fairly early whether you carry the gene or not.
The way I look at it, I'm already high risk (dx at 23), whether I carry a gene or not, so I wasn't planning to get tested. I did finally end up going through with it through a study at NCI (more because I wanted to be able to explain it to anyone who asked). Everything was confidential through that particular study, so there was no real risk of the insurance company giving me trouble if it came back positive...which was my biggest concern. When I did ask about that, however, I was told that TODAY the insurance company cannot deny you coverage if you carry a gene, but that's not to say that it wouldn't happen in the future.
If you really want to have the test done, you should. But don't let anyone pressure you into it. Your kids (if you have them) should get their colonoscopies fairly early whether you carry the gene or not.
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Guest - Worth
DNA Testing
The are two major forms of hereditary colon cancer: familial adenomatous polyposis (FAP) and hereditary nonpolyposis colon cancer (HNPCC, Lynch syndrome). The syndrome are usually suspected when there is a strong family history of colon cancer or colon cancer at a young age (less than 50). FAP can also be recognized by the appearance of many small, precancerous growths, or polyps, in the colon. Both of these conditions are hereditary ( passed from parent to child). Each child of an affected parent has a 50% chance of inheriting the condition.
If you have kids, they need to get a colonoscopy when they are 10 years younger then your diagnosis. I was diagnosed at 34, therefore my kids will start getting colonoscopies at 24. If you doctor does not approve it, take him to court or switch doctors.
For more information goto:
http://www.rush.edu/rumc/page-1116006418600.html
I get tested Dec. 13th.
All my best,
Worth
If you have kids, they need to get a colonoscopy when they are 10 years younger then your diagnosis. I was diagnosed at 34, therefore my kids will start getting colonoscopies at 24. If you doctor does not approve it, take him to court or switch doctors.
For more information goto:
http://www.rush.edu/rumc/page-1116006418600.html
I get tested Dec. 13th.
All my best,
Worth
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Guest
Hi everyone-
I am following along with your topic here about getting colonoscopies for children (which I don't have but will have to have a colonoscopy at 11, if I was diagnosed at 21? YIKES!) and genetic testing. I spoke to my oncologist about genetic testing last year at my visit with him and he recommended it. When I called my insurance company they said they wouldn't cover it. They would consider it if it was neccesary. How is genetic testing necessary? I mean, I had colon cancer at 21, my mom and uncle (her brother) have had precancerous polyps, and my grandmother had breast cancer at an earlier age. I am torn by the idea of finding out whether I carry a gene, especially since I don't have children (it's scary to think I could pass this on to a child). Yet, I have this nagging feeling that it may help me in the future. Any ideas how I can get my insurance company to see the light? I know it's an expensive test (per my oncologist), and I also know I can't afford it now with other medical expenses I've incured (not only do I have to have a colonoscopy every year, I just had my third shoulder surgery 7 months ago and am still suffering with that!). I'll gladly take any ideas anyone has! I am plagued by the idea that this test may shed light on this ordeal in my life, but can't have it done!!!!
Maggie
I am following along with your topic here about getting colonoscopies for children (which I don't have but will have to have a colonoscopy at 11, if I was diagnosed at 21? YIKES!) and genetic testing. I spoke to my oncologist about genetic testing last year at my visit with him and he recommended it. When I called my insurance company they said they wouldn't cover it. They would consider it if it was neccesary. How is genetic testing necessary? I mean, I had colon cancer at 21, my mom and uncle (her brother) have had precancerous polyps, and my grandmother had breast cancer at an earlier age. I am torn by the idea of finding out whether I carry a gene, especially since I don't have children (it's scary to think I could pass this on to a child). Yet, I have this nagging feeling that it may help me in the future. Any ideas how I can get my insurance company to see the light? I know it's an expensive test (per my oncologist), and I also know I can't afford it now with other medical expenses I've incured (not only do I have to have a colonoscopy every year, I just had my third shoulder surgery 7 months ago and am still suffering with that!). I'll gladly take any ideas anyone has! I am plagued by the idea that this test may shed light on this ordeal in my life, but can't have it done!!!!
Maggie
Wow
Wow, a lot of questions! You may email me directly at hlroc@aol.com and we can talk about the specifics. I hope that you are well! Know that you are in my thoughts and prayers!
Hugs!
Holly
Hugs!
Holly
Wow
Sue,
Fist things first...I would advise you to talk to your genetic counselor. Ask him/her to contact your insurance company for an explanation of your benefits and a preauthorization for testing prior to drawing your sample.
Next, you do not need to complete chemotherapy prior to doing the genetic testing. Your white blood count is what is important here. When you have your labs drawn your white blood count must be close to normal parameters because that is what is being evaluated in the genetic test methodology.
About your children, I would encourage you to talk to your family doctor. Explain to him/her that you have family history for colon cancer and that you wish to have your children screened (diagnostically excluded). Have him/her contact your insurance company for preauthorization. Should you have any problems with getting your children screened, you may contact me directly and I can help you with this obstacle. Yes, they do need to be screened at a younger age due to an established family history. About your screening, I do understand this question. However, you will be required to undergo follow up testing post chemotherapy to monitor your progress and wellness. I am on a three month follow up plan.
Insurance, each policy and it's benefits are different. If you would like to discuss the specifics with me you may contact me directly and I would be happy to help! My insurance covered the testing. However, I tested negative for the mutation(s). Legally, I do not know all of the loopoles that exist but if there is a will there is a way!
I so hope that this helps! Know that you may email me anytime and I would be happy to help you in any way that I am capable! Know that you are in my thoughts and prayers!
Big Hugs!
Holly
Fist things first...I would advise you to talk to your genetic counselor. Ask him/her to contact your insurance company for an explanation of your benefits and a preauthorization for testing prior to drawing your sample.
Next, you do not need to complete chemotherapy prior to doing the genetic testing. Your white blood count is what is important here. When you have your labs drawn your white blood count must be close to normal parameters because that is what is being evaluated in the genetic test methodology.
About your children, I would encourage you to talk to your family doctor. Explain to him/her that you have family history for colon cancer and that you wish to have your children screened (diagnostically excluded). Have him/her contact your insurance company for preauthorization. Should you have any problems with getting your children screened, you may contact me directly and I can help you with this obstacle. Yes, they do need to be screened at a younger age due to an established family history. About your screening, I do understand this question. However, you will be required to undergo follow up testing post chemotherapy to monitor your progress and wellness. I am on a three month follow up plan.
Insurance, each policy and it's benefits are different. If you would like to discuss the specifics with me you may contact me directly and I would be happy to help! My insurance covered the testing. However, I tested negative for the mutation(s). Legally, I do not know all of the loopoles that exist but if there is a will there is a way!
I so hope that this helps! Know that you may email me anytime and I would be happy to help you in any way that I am capable! Know that you are in my thoughts and prayers!
Big Hugs!
Holly
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