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Siblings ?

JR's picture
JR
Posts: 140
Joined: May 2009

Does anyone have any advise on how to get siblings to wake up and get a Colonoscopy ? I am a 56 year old male with colon cancer, advanced liver cancer, and lung cancer. I have two older sisters that don't seem to be in any hurry to get checked. How do I get them past the fear ? Is there still a misconception out there that colon cancer is a mans disease ?

John

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

Queen of denial,
Other than a good shaking (which I don't advise) I don't think you can do anything. They are in denial. When I was DX, about 12 people I knew all got checked. Some people feel it won't happen to them. It's too bad. I never heard of it just being a man's disease but there are a lot of misconceptions out there about everything.
-phil

Debb Hoy
Posts: 2
Joined: May 2009

I am the oldest of 5 the "big sis" and was 48 when colon cancer hit. I was not asking them to get tested I told them to get tested they all have families and this was not an option. 2 of the 4 had a positive test it was caught early enough and they are fine. I simply said colonoscopy or cancer you make that decision for yourself but you know what I have gone through, and I don't think this is rocket science. Of course calling them every week until they got it done didn't hurt either and I would have done whatever it took to get them to have the test!!! Keep on them and hang in there :)

Debb

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Hello John,

Ah, that old wive's tale that only men get CRC....darn that!!!

Try sharing the following links with your sisters...and then show them your scar and invite them to join you at your next oncology appointment.

2005 Colondar - All women models

2009 Colondar

Empowher - Colon Cancer and Women

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

I had colon cancer, my mom had colon cancer, lung cancer and cancer of the mediastinum, my grandmother had colon cancer, and three aunts...that is a lot of women in just my family. My mother-in-law and my husband's aunt have also had colon cancer - my husband's aunt is struggling very hard right now with her cancer (prayers would be greatly appreciated for Nora)...

Yes, women, lots of women, almost as many as men, get colorectal cancer.

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

Actually, 51% of crc diagnosed are women. 2/3 are diagnosed over 65. Your sisters are at substantial risk. I was diagnosed at 43 and I'm stage iv. All of my siblings refused to get a colonoscopy. My younger brother has found himself trying to get on the kidney transplant list again and they are requiring a colonoscopy because of my history, so he consented.

What makes me nuts is that as they refuse, my sons (17, 21 23) all are having a colonoscopy now. No fussing, they are just doing it. I think my boys are more mature than my siblings or yours!

Kimby

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

...went and got his colonoscopy after he found out my dx. He will be 40 in Sept, and his came out fine, I'm 4 years older then him, so I was glad I didn't have to do too much preaching to him to go, my dad died of it, well, he died of liver cancer which spread to his colon...I was dx'd at 43 in Jan, with Stage 4 CC with a tumor in my liver.

Hopefully more of this chemo will keep on killing it.

kmygil
Posts: 881
Joined: Feb 2007

What genetic problem is in your family? Ours is HNPCC. Do you know that FAP in the US has been traced back to a single family that landed here in the 1600's? Wierd, but true!

Kirsten

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

I have HNPCC - MLH-1 gene mutation. My husband, Bob, has HNPCC also - MSH-2 gene mutation. Needless to say, we will NOT be having children. We've both been "fixed".

I have heard that FAP originated from a single family...very interesting. Thankfully that is not the case with HNPCC - since my hubby and I both have HNPCC that would just be too icky... Thankfully we know for certain we are not far distant cousins - we have different mutations. Whew.....

Mutant

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

with the others. You have CRC, your siblings are at a very high risk. My doctors urged me to get my 34 year old brother to get one done. He hooed and haaed about it. My Mother was finally approved for one as was my aunt (her sister), and they both had many polyps. Since the polyps were caught early (and continue to get caught every year), my Mother and aunt will never get this cancer. No one in our families should ever get this cancer once we get it if they're diligent about getting screened. Of course unless it's FAP, or one of the other genetic ones that early screening can't always help. My brother finally got one after his doc learned of my history. They only found one little polyp, and it was benign! I was so thrilled because i know he'll never have to go through this hell either! At least not this cancer. Tell your sisters you want some good to come out of your suffering by utilizing it to save their lives.

Good luck with it!
Krista

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

a sibling has cancer and you get the test so we think....well, not in my case.

My sister was 30 when she was diagnosed with adenocarcinoma of the small intestine. No prior family history of intestinal cancer. None. Nada.

I don't think she did any kind of genetic testing (not that I remember). NOT ONE DOCTOR TOLD US TO GET A COLONOSCOPY. NOT ONE! And we were so ignorant of her type of cancer (pre-internet days in 1989) that we didn't know. That's what doctors are for, right?

Had just ONE doctor told us that we needed to get scoped I would have. Every single doctor I told about my sister said the same thing, "Oh that's rare." Added to no family history, we were all under the impression that this was such a rare fluke that someone so young (she had been misdiagnosed for years until it was too late) could get intestinal cancer.

Fast forward to 9 years after she died and I am doubled over with intensely painful abdominal pain accompanied by bloody mucousy diarrhea and vomiting and a doctor FINALLY says, "You need a colonoscopy." It was the slap-to-the-forehead I-coulda-had-a-V8 moment.

DUH!

It surely never occurred to me before that to get one. Even when she died!

So, may I suggest that you have a DOCTOR explain it to siblings the need for testing.

Two of my adult children already have had their first colonoscopy. They didn't balk at all. They watched their aunt and their mama go through their ordeals. And we're not making the same mistake twice.

Oh, and what I found out after my dx was her location was rare, not the cancer.

peace, emily Have you Juiced Your Carrot Today?

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

Emily,
your doctors were too busy checking themselves and had their heads up their own rear ends. The doc that I HAD (who I saw every year for 10 years and was/is and oncologist) didn't find mine until a blood test showed elevated liver functions. Their was no history and I was 46 at the time but to call me and tell me I had stage IV CC with not much of a chance was just mind blowing.

Bugs and I are having carrot juice now, gotta run (or hop).
;-)
-p

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

My cancer is a genetic form and none of my siblings will get tested. I was diagnosed at 46, as well, and my family just didn't think that my situation meant anything would affect them or their lives.
To this day, they will not get scoped. My one brother had a full-body scan and he said his doctor said he was "fine". What!?! He didn't have blood work done, had no scope and I am worried sick about all of them. Denial is a big part of this; I don't think they can believe that lightening can strike twice in the same family. There is no reasoning with that kind of logic. I told all of them that they should be checked, now the ball is in their court. I continue to hope that they will finally see the wisdom of early detection but, I can only say so much. The rest is in their hands.
I hope that more media exposure will bring about a change in people's thinking and behavior. This is a sore subject for me and I can only hope for the best when it comes to my family. I hope all of you fare better with your siblings and children. At least my kids take it seriously and know that they are at higher risk. They will get the proper monitoring as they grow and I am grateful for that.
Good luck in your efforts,
Hollyberry

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

and my story to tell your fam the importance...."my friend on the cancer boards didn't get scoped after her sister died of stage IV and 9 years later she was dx'ed with stage III colon cancer at 39 years old. They told her that the tumor was in there for maybe 10 years."

Who knows.

peace, emily

JR's picture
JR
Posts: 140
Joined: May 2009

Local television in Utah have been running commercials to pormote colon cancer screening. I don't know if they are running nation wide or not but they are pretty good. On the sarcastic side. That always gets my attention. They go like " What .... me worry, I'm fine. Kind of funny

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

My parents are the same way... My mom's answer is always, "We always seem to stay healthy." My response, "Yeah... so was I until I was diagnosed at 26/27 with Stage III CRC." She says, "Well, we'll see about trying to get your dad tested (he's now 60+) because he should be covered somehow because he is a veteran." This same cycle has been going on for almost 5 years. I can't get either one to see a doctor. I understand that they have no insurance and they really would struggle with the money these days to get it done, but I am so terrified that I will be saying goodbye to one of them at some point in time. I can't keep myself all worked up about it because, well, they are adults. They have to make that decision. I feel it is selfish, but I can't afford to get them screened either... so what do I do?

Luckily, my half-sister was screened right away... in fact, me refusing genetic testing so that she could forego paying for any more future colonoscopies has led to our not speaking for 4 years and I'm not sure we will ever speak again.

I wish you luck. I'm not sure you can force anyone to get screened. I wish it were easier to get screened, though. Maybe those who can't would.

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

2 sisters did, 2 didn't. My genetic test cleared me of the gene, but our family is riddled with colon (our Dad!), uterine (me and Mom!) and breast cancer (several aunts). I, myself, have now endured uterine, cervical and now colon cancer. The two who won't get tested have made their choices. I have to concentrate on me. I am tired of begging.

Vicki

PS..I have two sensible nieces who are checking it out, though...they are in their 30's. The docs told my daughter she needs to start in her 40's. I don't know, she's had IBS. I want her to check now.

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

As I'm sure you already know, having those particular primary canzers along with your family history means there is almost certainly a genetic component. Uterine, cervical and colon canzer are relating gentically. Being tested for 3 of the 4 known gene mutations and be negative doesn't 'clear' you. It just means they can't identify the gene. Are you seeing a geneticist? I moved from the onc that did my original genetic testing for HNPCC to a geneticist at a major NCI CCC and they are doing more testing on my original tumor as well as the waiting game for a test on that 4th, newly identified HNPCC gene. I'm not sure at this point what they'll be able to do but I can keep you updated if you are interested. It may help you (and your children/grandchildren) figure out what to do and where to go next.

Kimby

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Yes, I am working with a geneticist. Extensive family history, the whole bit. I even called relatives to fill in the blanks. They told me all 3 of my cancers were primary. Just lucky I guess. Uterine and cervical were stage 1 over 15 years ago. Coincidentally, I had them at the same time, one was found after the other was diagnosed. I am not carrying the HNPCC gene, and they told my daughter she was OK as it doesn't 'skip' generations. Two of my nieces were tested (good for them since their Mom's didn't do it!) and were also negative. My son-in-law is a doctor and very involved with my treatment, etc, since it's his kid's future as well! He keeps me up to date...even offered to pay the geneticist as it was very expensive, but my insurance came through. Thanks for the info. Information is knowledge is POWER.

Many hugs, Vicki

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