Hereditary Disease- Please inform family members

Buzzard
Buzzard Member Posts: 3,043 Member
edited March 2014 in Colorectal Cancer #1
I just wanted to see how many found out that there was a significant amount of kin that had colon cancer in your family that you never knew about until you were diagnosed. I found out after my diagnosis that my grandfather had it at 74, but died from a heart attack at 76, and my G G grandmother died from "bowel blockage" at the age of 39. This never came up until I found out that it is hereditary and I started doing some checking on past family members for the genetic testing and family histories that Vanderbilt does...I guess years ago that no one knew that it is a disease that sometimes percentage wise shows back up in future generations. I didn't have a colonoscopy until I was 53 and that was only because I never had any problems. BIG MISTAKE. If you have family members and have been diagnosed with colon, rectal, or anal cancers please be sure to pass this information on to all of your family members and your mom and dads brothers and sisters so that they can alert their siblings to start early checking for this "Pain in the Butt", and to maybe prevent many from going through what we do/did.......I don't blame any of my family members for not letting me know that information simply because they never thought that it was hereditary or it just never came up, nevertheless, it won't slip by again. It can be caught and nipped in the bud before it claims another human, but a little pre warning never hurts........thanks to you all.......
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  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #3
    Hereditary Disease
    I might be the anomally here. I am the first one in my family, going back a few generations on both my mom and dad's side of the family. Mind you, since being diagnosed my siblings have all had their first colonoscopies and have come back clear... not even a sign of a polyp.

    I was 51 when I was diagnosed and after having the surgery and healing from that, but before we started the chemo, I had a colonoscopy and was totally clear... not a polyp to be found. So I guess in my case, it was one of those flukey things where I obviously had had one polyp at some stage that then grew into a malignant tumour. The surgeon who found it said that with the size of the tumour, it had to be minimum 10 years old. So that would have meant, had I had a colonoscopy in my 30's, it probably wouldn't have been found. Had I had one in my mid 40s, it probably would have been found.

    Another question I have. I sort of know the answer but I think it can be a little misleading. Quite often you hear colorectal (colon or rectal) cancer being referred to as "a pain in the butt", or "the butt disease", or thing similar along that vein. Now, of course I realize that when dealing with any problems with the rectum or anal cancer, etc. referring to it as a butt problem is just a casual, sometimes humourous way of trying to make a serious disease have a bit of a lighter tone to it.

    The reason I say this is misleading... the first I knew I was having a problem was that I had this chronic pain in my left side, just to the left of my belly-button. It was a pain that didn't cripple me, or make me bend over in agony, just a chronic, ongoing pain 24/7. Of course I went to the doctor and tried to describe the pain, so he sent me for blood tests (to see if there was an infection), an ultrasound, and then we repeated the tests. Nothing could be found. He then referred me to a gastroenterologist, but since this was not considered life and death because we didn't know what it was and there was no infection involved, there was a long wait to get in to see this guy. Now granted, I could have said I want to be seen sooner and he would have referred me to someone different but even I didn't think it could be that serious of a problem if nothing showed up on any of the tests. Finally, one day the pain was really bothering me so I went to emergency. They could tell that I was in pain because my blood pressure was up to something like 175/120... which got them hustling! They pumped me full of morphine to bring the pain under control, and sure enough, my blood pressure came back down to 117/70. So, still no idea of what was causing the pain, but they sent me home with an appt. for a CAT scan in a week or so.

    To make a long story somewhat shorter (have you all noticed, I do tend to babble on in these posts??? )... the CAT scan showed an inflamed intestine, just above the sigmoid colon. So immediately, it was determined I had Diverticulitus, which would explain the pain. I was put on antibiotics (this was in Dec 2006) and told that once they kicked in, the pain would go away, but that I would need resection surgery, probably sometime in the spring 2007. I was referred to a surgeon for a consultation for this surgery.

    He, and he definitely is my hero, decided that he would like to have a look-see at what we were dealing with before just assuming it was Diverticulitus... and it was him that found the large tumour that had perforated through the intestinal wall. He also found out that not only had an abscess formed around the tumour, I also had Perotonitis (infection of the abdomen), and he wasn't going to let me leave the hospital. I told him I HAD to go, I had a small dog at home that I would have to make arrangements for... so he gave me 1 hour to go home and be back to the hospital... it was that dangerous. And here I had been walking all over the city, to/from work, walking the dog, etc. and just telling myself to quit being such a wimp. Work through the pain instead of dwelling on it ;) Meanwhile, he said, "You are one very, VERY sick lady and I have no explanation as to how you can even walk around this room, let alone walk anywhere."

    So, the long and the short of it is... the pain, the problem, the infection, etc. had nothing to do with my butt. If someone said to me, "You should make sure you get checked for a "Pain in the Butt", I would never have taken them seriously because my pain symptoms were in the lower left quadrant on the front. Most people don't even have pain as a symptom, I happened to be lucky that I ended up with an infection because it was the infection that caused pain. And no, there were no symptoms of diahrrea or constipation or anything remotely related to that end ;)

    Ok, ok... enough of my babbling . I think when one warns others to get checked, we should be stressing that there aren't necessarily ANY symptoms, which makes this disease so deadly. There is nothing to watch for... you just have to get checked by having a colonoscopy to catch anything that might be thinking of creating trouble.

    Hugggggggs,

    Cheryl
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
    Interesting subject...
    My grandfather died from colon cancer, my mom had endometrial cancer (another place genetic CRC can show up), I have had rectal cancer, stage III, and my full sister has had anal cancer, stage III.

    Heaven help my surviving daughter! (My other daughter died over a year ago from non-health related reasons). But, she will have her first scope at 39, unless she presents with symptoms...then in she goes (already had an FOBT at 27).

    Pretty sure it's genetic, but the tests I have researched aren't conclusive enough yet to convince me to have one. It can red line my daughter for insurance...sigh...

    Thanks for the info!

    Hugs, Kathi
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #5
    KathiM said:

    Interesting subject...
    My grandfather died from colon cancer, my mom had endometrial cancer (another place genetic CRC can show up), I have had rectal cancer, stage III, and my full sister has had anal cancer, stage III.

    Heaven help my surviving daughter! (My other daughter died over a year ago from non-health related reasons). But, she will have her first scope at 39, unless she presents with symptoms...then in she goes (already had an FOBT at 27).

    Pretty sure it's genetic, but the tests I have researched aren't conclusive enough yet to convince me to have one. It can red line my daughter for insurance...sigh...

    Thanks for the info!

    Hugs, Kathi

    Insurance
    Hey Kathi... I'm so sorry to hear about your daughter who passed away. I can only imagine the stress you were under having to go through that and having your own health battle to deal with.

    When you said that having a test could "red line my daughter for insurance", what does that mean? If the test were to show that your daughter might be susceptible to cancer, does that mean she might not be able to get insurance??? But that's crazy!! If one were to do whatever needs to be done to prevent it from developing into cancer, that would save an insurance company a lot more money than not having the test, getting cancer and then having to cover the costs.

    Or am I misunderstanding that line?

    Huggggggs,

    Cheryl
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
    CherylHutch said:

    Insurance
    Hey Kathi... I'm so sorry to hear about your daughter who passed away. I can only imagine the stress you were under having to go through that and having your own health battle to deal with.

    When you said that having a test could "red line my daughter for insurance", what does that mean? If the test were to show that your daughter might be susceptible to cancer, does that mean she might not be able to get insurance??? But that's crazy!! If one were to do whatever needs to be done to prevent it from developing into cancer, that would save an insurance company a lot more money than not having the test, getting cancer and then having to cover the costs.

    Or am I misunderstanding that line?

    Huggggggs,

    Cheryl

    Crazy or not...
    I have checked with an insurance gal I know...she said:

    "It's against the law, but the insurance companies get around it by denying coverage for some other reason."

    So, it's food for thought. I don't have to worry about me....since I have had 2 primary site cancers, it will be darn near impossible to get insurance in the future without excluding them as pre-existing.....

    Thank you, Cheryl, for the kind words on my daughter. Yes, it WAS a challenge, especially since 3 weeks before that my ex-husband (her dad) passed. I was juggling 2 estates, plus my health, along with trying to keep my other daughter's spirits up. Also, 2 weeks after my diagnosis, my beau's father died. He had to fly to Holland, so I had to find (and did!) a new cancer buddy to support me while he was away. Whew! We refer to the last 4 years as my "Job's Years"....from Job in the Bible....and NOW I will return 3 fold!!!!

    Hugs, Kathi
  • msccolon
    msccolon Member Posts: 1,917 Member
    #7
    CherylHutch said:

    Hereditary Disease
    I might be the anomally here. I am the first one in my family, going back a few generations on both my mom and dad's side of the family. Mind you, since being diagnosed my siblings have all had their first colonoscopies and have come back clear... not even a sign of a polyp.

    I was 51 when I was diagnosed and after having the surgery and healing from that, but before we started the chemo, I had a colonoscopy and was totally clear... not a polyp to be found. So I guess in my case, it was one of those flukey things where I obviously had had one polyp at some stage that then grew into a malignant tumour. The surgeon who found it said that with the size of the tumour, it had to be minimum 10 years old. So that would have meant, had I had a colonoscopy in my 30's, it probably wouldn't have been found. Had I had one in my mid 40s, it probably would have been found.

    Another question I have. I sort of know the answer but I think it can be a little misleading. Quite often you hear colorectal (colon or rectal) cancer being referred to as "a pain in the butt", or "the butt disease", or thing similar along that vein. Now, of course I realize that when dealing with any problems with the rectum or anal cancer, etc. referring to it as a butt problem is just a casual, sometimes humourous way of trying to make a serious disease have a bit of a lighter tone to it.

    The reason I say this is misleading... the first I knew I was having a problem was that I had this chronic pain in my left side, just to the left of my belly-button. It was a pain that didn't cripple me, or make me bend over in agony, just a chronic, ongoing pain 24/7. Of course I went to the doctor and tried to describe the pain, so he sent me for blood tests (to see if there was an infection), an ultrasound, and then we repeated the tests. Nothing could be found. He then referred me to a gastroenterologist, but since this was not considered life and death because we didn't know what it was and there was no infection involved, there was a long wait to get in to see this guy. Now granted, I could have said I want to be seen sooner and he would have referred me to someone different but even I didn't think it could be that serious of a problem if nothing showed up on any of the tests. Finally, one day the pain was really bothering me so I went to emergency. They could tell that I was in pain because my blood pressure was up to something like 175/120... which got them hustling! They pumped me full of morphine to bring the pain under control, and sure enough, my blood pressure came back down to 117/70. So, still no idea of what was causing the pain, but they sent me home with an appt. for a CAT scan in a week or so.

    To make a long story somewhat shorter (have you all noticed, I do tend to babble on in these posts??? )... the CAT scan showed an inflamed intestine, just above the sigmoid colon. So immediately, it was determined I had Diverticulitus, which would explain the pain. I was put on antibiotics (this was in Dec 2006) and told that once they kicked in, the pain would go away, but that I would need resection surgery, probably sometime in the spring 2007. I was referred to a surgeon for a consultation for this surgery.

    He, and he definitely is my hero, decided that he would like to have a look-see at what we were dealing with before just assuming it was Diverticulitus... and it was him that found the large tumour that had perforated through the intestinal wall. He also found out that not only had an abscess formed around the tumour, I also had Perotonitis (infection of the abdomen), and he wasn't going to let me leave the hospital. I told him I HAD to go, I had a small dog at home that I would have to make arrangements for... so he gave me 1 hour to go home and be back to the hospital... it was that dangerous. And here I had been walking all over the city, to/from work, walking the dog, etc. and just telling myself to quit being such a wimp. Work through the pain instead of dwelling on it ;) Meanwhile, he said, "You are one very, VERY sick lady and I have no explanation as to how you can even walk around this room, let alone walk anywhere."

    So, the long and the short of it is... the pain, the problem, the infection, etc. had nothing to do with my butt. If someone said to me, "You should make sure you get checked for a "Pain in the Butt", I would never have taken them seriously because my pain symptoms were in the lower left quadrant on the front. Most people don't even have pain as a symptom, I happened to be lucky that I ended up with an infection because it was the infection that caused pain. And no, there were no symptoms of diahrrea or constipation or anything remotely related to that end ;)

    Ok, ok... enough of my babbling . I think when one warns others to get checked, we should be stressing that there aren't necessarily ANY symptoms, which makes this disease so deadly. There is nothing to watch for... you just have to get checked by having a colonoscopy to catch anything that might be thinking of creating trouble.

    Hugggggggs,

    Cheryl

    Pain in the butt
    Buzzard's was in the rectum, so his was quite literally a pain in the butt. I actually had the same pain as you; left lower quadrant, I could place exactly where the tumor was. The pain I was experiencing was spasming of my colon when a firm stool tried to pass through the very small opening left from the large tumor. As long as my stool was soft and all there weren't any symptoms, but as soon as it got a bit firm, which happened cyclically if i didn't really watch my fiber intake, i was in so much pain i was in bed; which is what brought me to the doctor and the rest, as they say, is history.
    Mary
  • fez1
    fez1 Member Posts: 47
    #8
    KathiM said:

    Crazy or not...
    I have checked with an insurance gal I know...she said:

    "It's against the law, but the insurance companies get around it by denying coverage for some other reason."

    So, it's food for thought. I don't have to worry about me....since I have had 2 primary site cancers, it will be darn near impossible to get insurance in the future without excluding them as pre-existing.....

    Thank you, Cheryl, for the kind words on my daughter. Yes, it WAS a challenge, especially since 3 weeks before that my ex-husband (her dad) passed. I was juggling 2 estates, plus my health, along with trying to keep my other daughter's spirits up. Also, 2 weeks after my diagnosis, my beau's father died. He had to fly to Holland, so I had to find (and did!) a new cancer buddy to support me while he was away. Whew! We refer to the last 4 years as my "Job's Years"....from Job in the Bible....and NOW I will return 3 fold!!!!

    Hugs, Kathi

    OK- Now I'm upset. My son is 22 and already had a colonoscopy. My husband was diagnosed at 47 with stage IV cc with liver mets. The surgeon said that my children needed a colonoscopy about 10 years before. My husband's gastroenterologist said "It would be crazy to wait that long" He preferred a screening colonoscopy for my 3 children at around age 21. My 22 year old son had a benign polyp removed and they want to follow up in one year. He will follow up and I intend to have my other screened at the same age. My son does not have his own health insurance yet- he's still a full time student until 12/08, so he's on mine. I pray that this doesn't affect him getting his own insurance!

    Carol
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #9
    KathiM said:

    Crazy or not...
    I have checked with an insurance gal I know...she said:

    "It's against the law, but the insurance companies get around it by denying coverage for some other reason."

    So, it's food for thought. I don't have to worry about me....since I have had 2 primary site cancers, it will be darn near impossible to get insurance in the future without excluding them as pre-existing.....

    Thank you, Cheryl, for the kind words on my daughter. Yes, it WAS a challenge, especially since 3 weeks before that my ex-husband (her dad) passed. I was juggling 2 estates, plus my health, along with trying to keep my other daughter's spirits up. Also, 2 weeks after my diagnosis, my beau's father died. He had to fly to Holland, so I had to find (and did!) a new cancer buddy to support me while he was away. Whew! We refer to the last 4 years as my "Job's Years"....from Job in the Bible....and NOW I will return 3 fold!!!!

    Hugs, Kathi

    Crazy or not...
    Kathi... after reading various posts of yours, I already thought you were an amazing woman, just with what you have had to go through with your own health and cancer. I haven't read any earlier posts of yours, so had no idea you also went through all the rest of this stuff with your family. You have raised to even higher status than amazing in my books! It doesn't surprise me in the least that you are considered "cured" and you will definitely beat this monster!! With all you've gone through and still managed to gain the strength to battle the monster... there is absolutely nothing that will ever hold you down for long!! :) You are definitely a hero of mine, even though we have never met in person!!

    As for the insurance... being a Canadian, I have to plead total ignorance to how American health insurance works. Oh sure, I have a lot of American friends and I have heard various horror and success stories regarding insurance. My problem is that I don't understand how one of the most powerful countries (if not THE most powerful country) in the world, could make it so difficult and confusing for their citizens to get one of the basic needs in life -- that of medical attention. Let's face it, the USA has some of the most incredible doctors/researchers/institutions/etc. so how come the people who need this attention can't get it?

    I know this is off this topic so maybe we should start a topic regarding insurance, the problems people on this board have with it and the success stories that others have. I just can't believe that EVERYONE in the US has to jump through hoops... tell me it isn't so?

    Hugggggs,

    Cheryl
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #10
    msccolon said:

    Pain in the butt
    Buzzard's was in the rectum, so his was quite literally a pain in the butt. I actually had the same pain as you; left lower quadrant, I could place exactly where the tumor was. The pain I was experiencing was spasming of my colon when a firm stool tried to pass through the very small opening left from the large tumor. As long as my stool was soft and all there weren't any symptoms, but as soon as it got a bit firm, which happened cyclically if i didn't really watch my fiber intake, i was in so much pain i was in bed; which is what brought me to the doctor and the rest, as they say, is history.
    Mary

    Pain in the butt
    Ahhh...ok, that does make a bit of a difference. I could never call mine a "pain in the butt" because the pain was nowhere near my butt, nor was the surgery. When I'd tell people I had colon cancer, so many of them did think it was to do with the butt and were surprised that I had had abdominal surgery where the surgical wound was about 4 inches above my pubic bone and straight up past my belly button. As a matter of fact , the surgeon veered to the left of my belly button and then up to avoid me losing my belly button.

    My pain wasn't quite the same as yours, Mary, in that mine was chronic 24/7... it never did let up. I happen to have a high tolerance to pain so it takes a LOT of pain for me to really feel it. I reckon I was in pain for about 6 months, but I kept saying, "Oh, you are exaggerating, it isn't that bad... quit being a wimp and get out there an walk it off". So I would walk 1 1/2 miles to work, back again after work then take the dog out for a 1 1/2 mile walk after work... and get really annoyed at myself for whining about the pain.

    By the time the surgeon actually found out what was wrong, what was going on in my abdomen and how large the tumour was, he was shocked that I could even stand up, let alone walk anywhere. So, I really do believe we can do incredible feats if we have mind over matter. I shouldn't have physically been able to walk, yet I had no idea I was in serious trouble.

    Unfortunately, HAD I had a colonoscopy anytime in the 10 years before being diagnosed, they would have found this tumour... and maybe found it before it perforated the intestine. So I wouldn't have had to go through everything I have already and whatever is in store for me in the future.

    So for that alone, I agree... tell everyone you know and love to have a colonoscopy. Not everyone is going to be as lucky as we are that there eventually was pain to warn us. My surgeon had said that December, if it wasn't for the abscess that had formed around the tumour, I would not have had pain and I would have been dead by March.

    Hugggggs,

    Cheryl
  • frisco_seabiscuit
    frisco_seabiscuit Member Posts: 10
    #11
    fez1 said:

    OK- Now I'm upset. My son is 22 and already had a colonoscopy. My husband was diagnosed at 47 with stage IV cc with liver mets. The surgeon said that my children needed a colonoscopy about 10 years before. My husband's gastroenterologist said "It would be crazy to wait that long" He preferred a screening colonoscopy for my 3 children at around age 21. My 22 year old son had a benign polyp removed and they want to follow up in one year. He will follow up and I intend to have my other screened at the same age. My son does not have his own health insurance yet- he's still a full time student until 12/08, so he's on mine. I pray that this doesn't affect him getting his own insurance!

    Carol

    No Insurance
    Like many other Americans I do not have health insurance. I couldn't get it through my job (or couldn't afford it with my salary). Now I'm a full time graduate student, and working part time. My Dad was diagnosed with colon cancer stage IV this summer. I had a colonoscopy a few years ago at age 22. They didn't find anything except hemmorhoids (lots of fun). I'm worried that I won't have health insurance and will have a major health problem.

    Lack of health insurance is a major issue! Either we personally do not have health insurance, or we are concerned about a loved one who doesn't. What should we do? Does anyone know what's available to help people like me? And when applying for insurance, will it make a big difference that I have this cancer in my family?
  • tlsart
    tlsart Member Posts: 33
    #12
    Hereditary disease
    Since you brought it up I feel compelled to respond. I have been pretty upset at times about this very issue. My family is like most pretty disfunctional so as a girl growing up we didn't have much contact with my fathers side of the family. Seems while I was worried about getting skin cancer (my father died at 56 and his mother @ 62 from skin cancer)I should have been concerned about his grandfather that died of intestinal cancer, my own mother cared for the man when they where first married. Her reason for not telling any of her children about colon cancer is well they didnt call it that then and it's only been in recent years they tell 50 year olds to get screenings. My reply was all of your children(4) should have been receiving colonoscopy's at age 30. I have informed my siblings and so far only 1 has gotten checked and all was good. Maybe had I have known I too would have blown it off and thought well I feel fine no worries. However I have been blowing the dr. off for a couple of years about the small % of blood in my urine and not being able to eat at salad bars because of sudden issues related to a bathroom. It just sort of creeps in and at the time I just chalked it up to the ageing processs you don't really realize your not going properly. I really have to say though in hindsight that was my only problem. I never had any other symptoms but in the last year I had started really getting active and was successful at dropping 20 lbs., people started to say I was really getting to thin. I was glad about that, now with CHEMO I have gained all that weight plus and not so happy. Only time will finish this story but for today I'm on the right side of the dirt and will soon be having my 46th birthday 9 months ago I was told I probably wouldn't be here so all is well... Thanks for letting me vent
  • tlsart
    tlsart Member Posts: 33
    #13
    tlsart said:

    Hereditary disease
    Since you brought it up I feel compelled to respond. I have been pretty upset at times about this very issue. My family is like most pretty disfunctional so as a girl growing up we didn't have much contact with my fathers side of the family. Seems while I was worried about getting skin cancer (my father died at 56 and his mother @ 62 from skin cancer)I should have been concerned about his grandfather that died of intestinal cancer, my own mother cared for the man when they where first married. Her reason for not telling any of her children about colon cancer is well they didnt call it that then and it's only been in recent years they tell 50 year olds to get screenings. My reply was all of your children(4) should have been receiving colonoscopy's at age 30. I have informed my siblings and so far only 1 has gotten checked and all was good. Maybe had I have known I too would have blown it off and thought well I feel fine no worries. However I have been blowing the dr. off for a couple of years about the small % of blood in my urine and not being able to eat at salad bars because of sudden issues related to a bathroom. It just sort of creeps in and at the time I just chalked it up to the ageing processs you don't really realize your not going properly. I really have to say though in hindsight that was my only problem. I never had any other symptoms but in the last year I had started really getting active and was successful at dropping 20 lbs., people started to say I was really getting to thin. I was glad about that, now with CHEMO I have gained all that weight plus and not so happy. Only time will finish this story but for today I'm on the right side of the dirt and will soon be having my 46th birthday 9 months ago I was told I probably wouldn't be here so all is well... Thanks for letting me vent

    Just one more thing CEA#
    I've been wondering about a CEA test for my other 2 siblings since a colonoscopy is a little bit invasive. Do you all think it would be a telling factor for them like it has proven to be for me that cancer is active. Just want some opinions. Thanks Theresa
  • msccolon
    msccolon Member Posts: 1,917 Member
    #14
    tlsart said:

    Just one more thing CEA#
    I've been wondering about a CEA test for my other 2 siblings since a colonoscopy is a little bit invasive. Do you all think it would be a telling factor for them like it has proven to be for me that cancer is active. Just want some opinions. Thanks Theresa

    CEA
    From what I have heard, CEA is only accurate if they KNOW you have active cancer, or have had. Even in those of us diagnosed it's not always an accurate test and they NEVER perform it on people who aren't diagnosed... it's just not very accurate. A Fecal Occult Blood Test would be their better non-invasive choice... would show blood in the stool, or NOT!
    Mary
  • KathiM
    KathiM Member Posts: 8,028 Member
    #15
    msccolon said:

    CEA
    From what I have heard, CEA is only accurate if they KNOW you have active cancer, or have had. Even in those of us diagnosed it's not always an accurate test and they NEVER perform it on people who aren't diagnosed... it's just not very accurate. A Fecal Occult Blood Test would be their better non-invasive choice... would show blood in the stool, or NOT!
    Mary

    I agree, Mary!
    For some people, CEA is not a good indicator. The biggest signs to watch out for are change in bowel habit (I had to be near a bathroom after each meal, for about 6 months before dx), unexplained weight loss, abdominal pain, passing blood. After getting the last one, at 49 (one guy said "you are too young, and not the right sex, it's most likely something else...), my PCP did an exam and found my tumor on my rectum. My CEA, at that point, was 0.7...

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    #16
    CherylHutch said:

    Crazy or not...
    Kathi... after reading various posts of yours, I already thought you were an amazing woman, just with what you have had to go through with your own health and cancer. I haven't read any earlier posts of yours, so had no idea you also went through all the rest of this stuff with your family. You have raised to even higher status than amazing in my books! It doesn't surprise me in the least that you are considered "cured" and you will definitely beat this monster!! With all you've gone through and still managed to gain the strength to battle the monster... there is absolutely nothing that will ever hold you down for long!! :) You are definitely a hero of mine, even though we have never met in person!!

    As for the insurance... being a Canadian, I have to plead total ignorance to how American health insurance works. Oh sure, I have a lot of American friends and I have heard various horror and success stories regarding insurance. My problem is that I don't understand how one of the most powerful countries (if not THE most powerful country) in the world, could make it so difficult and confusing for their citizens to get one of the basic needs in life -- that of medical attention. Let's face it, the USA has some of the most incredible doctors/researchers/institutions/etc. so how come the people who need this attention can't get it?

    I know this is off this topic so maybe we should start a topic regarding insurance, the problems people on this board have with it and the success stories that others have. I just can't believe that EVERYONE in the US has to jump through hoops... tell me it isn't so?

    Hugggggs,

    Cheryl

    I send my hugs...
    Cheryl, you are such a dearheart! Thank you for your kind words. When I was in the midst of all of it, I just put one foot in front of the other, and held fast the belief that I WOULD get through it all. I still have tears occasionally for my daughter, especially since there is a wrongful death lawsuit going, and I must participate and hear all the things that were done wrong that led to her death.

    The keyword in America with health insurance is 'advocacy'. Through my experiences, I have learned the value of appeals and managing my own care. Yes, I know, it's not right, especially one day I remember, day 3 after chemo, sick as a dog (I had to keep excusing myself on the phone to got throw up), I had to fight a decision with my insurance carrier. I guess the bathroom sounds got my point across.

    I have an HMO, so it is a bit different than other private insurance. BUT, with my resection, they referred me to a surgeon in my group that could only promise a 50% chance of saving my spinchter. I found another doctor, contracted with a different group (HMO's work off of referral groups), that gave me a 3% (that's THREE) chance of a bag!!!!. Initially, they denied the 'out of group' referral. This was the phone call that had all the sounds in the backgroup....3 days later, my referral was approved. I went on to have the surgery there, after 7 hours, I emerged without a bag, my descending colon my 'new' rectum, and I used the whole thing that very night....

    BIG hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    #17
    fez1 said:

    OK- Now I'm upset. My son is 22 and already had a colonoscopy. My husband was diagnosed at 47 with stage IV cc with liver mets. The surgeon said that my children needed a colonoscopy about 10 years before. My husband's gastroenterologist said "It would be crazy to wait that long" He preferred a screening colonoscopy for my 3 children at around age 21. My 22 year old son had a benign polyp removed and they want to follow up in one year. He will follow up and I intend to have my other screened at the same age. My son does not have his own health insurance yet- he's still a full time student until 12/08, so he's on mine. I pray that this doesn't affect him getting his own insurance!

    Carol

    The best advice, don't share...
    I guess the best thing is to not share with the insurance. If (and it's a BIG if) my daughter ends up with genetic testing, I will self-pay, and she will be a Jane Doe.

    As far as scopes, etc...that doesn't seem to carry as much weight as this gene positive thing.

    AND, my testing will never be shared with HER insurance people, if it's positive. The only way she can get this genetic testing is if I do it, and it is positive. So, there IS a buffer.

    You were correct to tell your son's doctor all the history, my daughter's know hers. Otherwise, they are not alerted to the potential risk, and will do all sorts of other testing, based on his age, before an scope, FOBT, or a rectal exam. You can appeal any bad decision with the insurance company on this....my daughter is permanently disabled, so she is on Medicare, so it really is a moot point for her. EXCEPT...she had a FOBT test done recently, and the payment was denied by Medicare, because she was under the age of 50!!!! (Yes, I am appealing that, too...lol).

    My daughter's caregivers are well aware of the family history, as well as her doctor. Since I have also had breast cancer, and my mother (her blood grandmother), has had it as well, she will be scoped at age 39, and mammos will start at age 30. I hug her often and say how sorry I am for her gene pool (rofl!).

    Hugs, Kathi
  • msccolon
    msccolon Member Posts: 1,917 Member
    #18
    KathiM said:

    I send my hugs...
    Cheryl, you are such a dearheart! Thank you for your kind words. When I was in the midst of all of it, I just put one foot in front of the other, and held fast the belief that I WOULD get through it all. I still have tears occasionally for my daughter, especially since there is a wrongful death lawsuit going, and I must participate and hear all the things that were done wrong that led to her death.

    The keyword in America with health insurance is 'advocacy'. Through my experiences, I have learned the value of appeals and managing my own care. Yes, I know, it's not right, especially one day I remember, day 3 after chemo, sick as a dog (I had to keep excusing myself on the phone to got throw up), I had to fight a decision with my insurance carrier. I guess the bathroom sounds got my point across.

    I have an HMO, so it is a bit different than other private insurance. BUT, with my resection, they referred me to a surgeon in my group that could only promise a 50% chance of saving my spinchter. I found another doctor, contracted with a different group (HMO's work off of referral groups), that gave me a 3% (that's THREE) chance of a bag!!!!. Initially, they denied the 'out of group' referral. This was the phone call that had all the sounds in the backgroup....3 days later, my referral was approved. I went on to have the surgery there, after 7 hours, I emerged without a bag, my descending colon my 'new' rectum, and I used the whole thing that very night....

    BIG hugs, Kathi

    that reminds me of my incredible insurance saga
    I was in the hospital, the night before surgery (07/22) to remove what turned out to be a soccer ball sized tumor on my right ovary, on the phone with my insurance company, who i had been in discussions with since February to get my insurance instated correctly related to a divorce. The hospital financial staff was quietly on the other line until the point where he assured me my insurance would be retroactive once all the final stuff was taken care of, which involved a large check which I couldn't take care of until I got home from the hospital. Then, once home, I had to have my daughter handle the phone discussion to finalize what needed to be done, with me on the sofa in the background correcting information, etc. Until that point, I had been getting the runaround consistently, even after bringing in an advocate, but I kept good records and sited every date and time and person I spoke with every time I called to "resolve" the issues. UNBELIEVABLE! And come January 28th, my current benefits, which is a federal version of COBRA, will run out, so who knows what happens then! I try not to worry and pray for something to come along between now and then.
    Mary
  • doris2657
    doris2657 Member Posts: 38
    #19
    colon cancer
    Hi

    my grandfather had colon cancer at 70 and died from it.So as soon as I found out that I had stage 4 colon cancer I asked my onc to test me for Lynch gene and I happy to say it was negative.my kids will still have to be checked but I know they dont cary the gene that causes colon cancer,some of you might want to consider having the test and my insurance paid 100% of it.

    God bless

    Doris
  • tlsart
    tlsart Member Posts: 33
    #20
    Lynch Gene
    Thanks for the info I was unaware of such a gene I will look into this a little further and pass this info onto family members. Thanks Theresa
  • changing2
    changing2 Member Posts: 118
    #21
    Strange question:)
    I didn't know of anyone in my family having colon cancer therefore I too postponed my first colonoscopy till I was 56...yep...BIG MISTAKE! However looking back...my father was dx at 68 with stomach and esophegeal cancer and died 4 years later. My sister was 52 when they found stomach and pancreatic ca and she died in 4 months. Never knew which cancer was primary for either one of them BUT they are all related to the digestive system....as is the colon, I believe....hmmm...MD wasn't sure if there was a connection but I really question that! Both my kids have IBS though and are being followed! Interesting to read everyone's comments!

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