Well, NOW's a fine time to tell us....

[pearlgirl]

When B underwent genetic testing (last year? 2 years ago? It's a blur...) we contacted relatives near and far, explaining how important it was to have a family history of illness/disease, even if it wasn't cancer, so all that could be taken into account by the genetic counselor. (If he had been found to have Lynch Syndrome or other anomaly, it may have changed the course of his treatment.) I was flabbergasted that it took some pleading - and multiple phone calls - to get responses from some people.

Fast-forward to last weekend, when we visited some out-of-town family members. Apparently several of those there were unaware B even had cancer and had begun a conversation about a friend's radiation. The conversation, which B chose not to take part in, eventually came around to his great uncle's decision not to do chemo. (He had cancer??) Yes, not only had he passed away from cancer, but it was COLON CANCER. Gee, thanks for sharing that with us now, but not thinking it was important enough to mention then.

Unbelievable.

[Joy]

My mother swore up and down that there was NO cancer in our family......Grandfather died of lung cancer, cousin died of Bowel cancer (colon cancer) my sister died of esophogeal cancer and my other sister died of ALS. I have now been diagnosed with CLL (chronic lymphotic leukemia) and I remember being told that Grandma died of anemia (could this have been CLL??). My mother was a nurse and she was well aware of this information but she was of the old school and "cancer" was not something that was spoken about.

I on the other hand think that my children have a better chance, they are vigilant and they will get colonoscopy done at a much earlier age.

[weisssoccermom]

I harp on this but I don't care. Not only do we need to know if there is a family history of cancer, but for potential colorectal cancers, we also need to know if there is a family history of POLYPS - benign or precancerous. Too often, we gloss over that or it is never mentioned. I only learned after my mom had died and I got ahold of her medical records, that she had had polyps removed not once but twice. Now, I never knew that one until LONG after I was diagnosed! I have a friend who was diagnosed with rectal cancer about 6 months after I was. Her mom had just had surgery (lumpectomy) for breast cancer and thankfully, they caught it early and no other treatment was necessary. D only found out when she was dealing with her rectal cancer diagnosis that yes, her mom had had scopes and had had polyps removed on more than one occassion. Too bad no one had thought to mention that fact - maybe D wouldn't have had to lose 3/4 of her rectum!

Moral of the story: be apprised of your family's history - a history that would include what might seem like benign problems (colorectal polyps, some familial breast issues, etc) as these can be easily watched for and serious complications can potentially be avoided.

It's a good thing that our children know about our cancer, but do a little digging and make sure that there isn't a 'family history', particularly on the other side of the family of any benign/precancerous polyps. I'd sure want to know about everything that I could.
Jaynee

[janklo]

I get this reaction in my husband's family too. His sister (in her 40s) told me she's had several colonoscopies. I asked her "why" (meaning - did she have polyps or something?). She answered "for medical reasons". What does THAT mean? Duh, it's not like you have a colonoscopy for "cosmetic" reasons! My daughter, her niece has colon cancer! So if she knows of some family thing, I wish she'd admit it! Another niece had exploratory surgery at age 20 and they found her colon was abnormally large. That niece's mother has breast cancer but has a colostomy. No one will tell us why she has that. She had a blockage from her breast cancer treatment, but would that give her a permanent colostomy? What brought this on? No one will tell us - I wish they weren't so closed mouthed about it all! My husband, other daughter and I all had colonoscopies and we were checked out fine. I am very upfront with them about my daughter's medical info. Wish they would be too.

[Gaelen]

My late father had polyps removed two or three times (heck, after hearing that it had been even once, at ~age 50, it didn't really matter how many more times...)

He did not believe in discussing his medical conditions with his children, and neither did/does my mom. As he advanced into dementia it became really challenging to provide effective help. The worse his dementia became, the lower his inhibitions. He also had about a 60-70% hearing loss for my entire life due to an accident when he was a teenager. For literally decades, this man complained that we were all mumbling! One day about two years before his death and shortly before my dx, he began to FINGER SPELL - something I'd learned how to do 30 years earlier in school. He knew I signed, he knew I taught all of my nephews how to finger spell and do some basic signs - but never once, when he desperately needed to communicate with us, did he ever use the skill he finally revealed he'd learned when he was in the Navy in the 40s! Anyway - as his inhibitions relaxed, he one day revealed that the doctor he'd been seeing for his prostate had also found polyps at his last scope. I was speechless, and looked at my mother, who nonchalantly said something like 'oh, yeah, he's found polyps a couple of times since his first exam.' I asked when the first exam had been. Oh - sometime around his 50th or 51st birthday.

By that family history, I should have been scoped at 40. But you can't take the preventative health care tests you don't know you need. By the time I knew, there wasn't any point in discussing it with my dad - how do you tell a 78 y.o. man with moderate dementia that his oldest daughter is now in the cage match of her life with stage IV cancer because she never knew or suspected that she should have been scoped before she turned 40? You don't.

OTOH, it taught me to be vigilant with my mom because she'll fall into that kind of selective information-sharing again if the topic makes her uncomfortable. Old habits die hard, if at all.

[RayGirl]

My mom flew down a few hours after my dx. She sat with me in four docs office over the next three days and "helped" me fill in the family history section.

A week later during a card game she mentions "you knew your grandmother had colon cancer, right?" Hmm since I never listed it on any of those forms, I think that should have been a clue that I didn't know.

I blame my great-grandmother who always announced how no one in our family had cancer as if it was something only the "wrong" people could catch. My same grandmother only told her husband and my mom 25 year later, about her treatment for ovarian cancer in the 1960's. She did not want to disappoint her mother. This cancer I did know about.

[LoriJo]

It is so hard to believe that people didn't talk about their health much or not at all back then. My grandpa had colon cancer back in the mid 50's, I wasn't born until 61. All I do remember about any talk of it, is that he had a bag, my grandma would tell me. I did figure it out as I grew older that he had colon cancer. When I got to my late 30's my dad would tell me that I should have a colonoscopy. I didn't think much of it at the time. I didn't really know that he had 2 feet of his colon removed when I was a kid (kids don't think much about things). Well two days after my dad died of emphysema, I had my first colonoscopy done. Sure enough the doc found a lot of polyps. I had an endoscope done a few weeks earilier due to having heartburn all the time. She doctor came in and said "I have never seen a stomach like yours before, the inside is covered with a wall of polyps, hundreds of them". They were non cancerous thank God. So a few days later, the office calls to tell me that the polyps in my colon are pre-cancerous. A couple of weeks pass and the doctor herself calls me to tell me that she wants to send me to U of M for genetic testing. U of M sends me this big envelope with a very long questionnaier to fill out. Well that took a lot of figuring out how I was going to fill this thing out. Both my parents had died, their partents were gone also, and I had no aunts or uncles living either. I had to rely on my older half sister to help me out. Long story short, my grandpa had a mutated gene, that caused him to have FAP. No one else in my family had it, except my dad obviously did, but I don't understand only removing two feet of his colon due to many polyps in it, he didn't have cancer. So I passed this gene onto my daughter, my son doesn't have it. I think that they should give every new mom this form to fill out so that they can have it for their children it needed in the future. It would of been easier if my parents would of had these to fill out for me when I was a kid. FAP wasn't discovered until the early 1990's though, I think. Anyway, thanks for listening to me rant. I think that we should all talk about the bad stuff that effects our bodies so that our younger releatives know about them.
LoriJo

[blakeswife]

Interesting. Same thing happened to us.

When Blake was dx, they asked us if any family member had CRC. We said no. Then his mother told us that the intestinal "blockage" his Dad had removed years earlier WAS CRC! Apparently, nobody told his parents how important it was to notify, and screen, the family? Unbelievable.

Had it been brought to our attention, we probably would have caught it before it reached stage IV. Ugh.

Luckily, all his siblings have now been tested and are clear.

Kathy

[BrownBagger]

"cancer" was not something that was spoken about.

Or bowel issues of any kind, at least not in many families.

What sticks in my craw (and I guess I'm blaming others for my own lack of initiative) is that prior to dx, I told every doctor I ever saw in my adult life that both of my maternal grandparents died of colorectal cancer. They'd say: "How bout your mother?" I'd say, "She's been getting scoped regularly for years and always comes up clean--no polyps, no nothing." They'd say, "Get scoped when you turn 50." Which I did.

[lorrainem]

Eric...I'm with you on the family line thing. After diagnosis, I informed on the family history that my paternal aunt died of colon cancer in her 80s. It was noted but dismissed as not being a "first line" relative. We've since come to learn, that her brother also died of colon cancer. This information wasn't withheld from us by the family, but I think it's an important part of the puzzle, it has to be. Honestly I haven't had genetic testing done nor have my brothers or cousins. I'm the only one to have the privilege of having any cancer so far. I've also made it known that they all need to be scoped. The rest is up to them; however, my kids have been informed to tell every doctor they ever see of the history.

[Joy]

I pushed my kids to go for a colonoscopy. My son finally made an appointment with a colon rectal "specialist" because he was having bleeding. The specialist blushed him off and said "come back when your are fifty" and I will do a colonoscopy then. I'm so mad I'm spitting bullets My son was so afraid of the colonscopy but I really pushed him, and I was PROUD that he was being proactive!! Then this "idiot" of a doctor tells him "don't worry so much this is probably only hemeorroids"



I could cry.....

[Sinfulsot]

when it comes to a scope, i think a GI would be the best candidate to consider as the "colon-O-scope operator".

one would think that any sort of blood would at least consider a look, even if it is the ever so deadly sigmoid-o-scope, especially when the complainant is young.