<p>As some of you know I am a cancer survivor: breast and thyroid…I am dealing with stage 0 of CLL (without the marker)…and some other yucky stuff. My mother died of CLL. Last night my son’s girlfriend’s mom said in the most offhanded way that her husband has CLL. </p>
<p>In addition three people in my family (both sides) had leukemia and two died of it.</p>
<p>So, at what point do we say genetic evaluation? Should we? Or should we say nothing and hope that nothing comes of this? </p>
<p>Any insight here would be very much appreciated.</p>
<p>I’d speak with your oncologist. When my father was diagnosed with AML just a few years after his older brother died of leukemia we as a family got nervous. Turned out, with that particular cancer it was most likely environmental. My father worked in a tire plant (including using benzene to clean) and my uncle worked around chemicals as well. If these people lived in the same area as one another, or worked in similar industries it could explain the cancers.</p>
<p>I assume you’re referring to saying something to your son and/or his girlfriend. My bet is, with both parents having some sort of cancer, this is already in the back of these kids’ minds, even if the thoughts haven’t quite congealed. I wouldn’t say anything at this point, except in a broad reference, if the appropriate opportunity arose and they asked you. So many new treatments are on the horizon for so many diseases now, I’d hate to see a romance squashed because of future, possibly unfounded fears.</p>
<p>BTW - I am in the process of considering genetic testing for breast/ovarian cancer as I now have a number of maternal, second-degree female relatives with one or the other. However, two of them are aunts who got their disease in their late 70s and 80s. And, I DO have a lot of female relatives, so chances are some of them are going to eventually develop some sort of female cancer. The doctor sort of laughs when I tell him about my paternal grandmother who got ovarian cancer at age 99 - they discovered it when she developed an intestinal blockage and she ended up with a colostomy; for her 100th birthday present request? - a reversal of that colostomy, which she got and was happy without it for the next year and a half she lived until the cancer came back. But my doc does not consider her an additional risk for me since she was so old.</p>
<p>Natl Institutes of Health puts it this way: People have many different reasons for being tested or not being tested. For many, it is important to know whether a disease can be prevented or treated if a gene alteration is found. In some cases, there is no treatment. But test results might help a person make life decisions, such as career choice, family planning or insurance coverage. A genetic counselor can provide information about the pros and cons of testing.</p>
<p>I’d speak with the oncologist for both advice and referral to a genetic counselor. Best wishes.</p>
<p>Thank you all so much for your responses. I don’t believe that the girl knows that her father has CLL. But the next time I see the doctor I will definitely ask him. </p>
<p>For now I will bite my tongue and not say anything. My husband, hearing this after we left dinner last night, my husband the emotionally constipated one, looked straight ahead and began to tear up.</p>
<p>The family is fractured. And her father is in his 80s. And speaking from experience when my mother was diagnosed nothing changed for several years. The only change was that my mother was far more fearful of getting a cold because her ears would stop up and she was hard of hearing. No pills…didn’t have to take her to the doctor.</p>
<p>My kids “know” (and ignore, possibly a good thing) the CLL. When we travel I am aware that discussions go on about my endurance. (I have changed my exercise routine and have more energy>) </p>
<p>All the girl knows is that her father has fevers. It is possible that she knows and doesn’t want me to know. She may not want me to know for just this question. This is a disease that some people, Jill Clayburgh for instance, lived 19 years with CLL.</p>
<p>I couldn’t hide illnesses from my kids. They saw the wigs. But I gotta tell you, they respect my privacy. Our good friends know…but not people that I meet on a vacation. And when this subject came up there were three of us standing there…the third being a wife of a physician. The mother fumbled for the diagnosis. I supplied it. The mother asked me if I knew about CLL. I just said yes and changed the subject. The doctor’s wife caught what I said.</p>
<p>OK… makes more sense now, knowing how old he is, and that the family is fractured. Disclosure can be tricky in those kinds of situations. But if the daughter doesn’t know, and then finds out, and then realizes you (as well as others obviously) knew all along and she didn’t, she might experience a lot of anger toward her family.</p>
<p>Ellebud- talk with a geneticist to learn about the pros and cons of genetic testing. I think the decision varies depending on the disease and severity of the family type. If that makes sense.</p>
<p>My dad was one of 15 kids and 13 of them died of colon cancer. Along with his grandma and great grandma. My brother had colon cancer and my sister doesn’t carry the gene- lucky her!</p>
<p>When I was in the military, I went for years without getting a colonoscopy because my ‘doctor’ thought the stool sample was good enough. Luckily I had a ob/gyn nurse asking family history questions and asked why didn’t I have one done. When I finally had my first scope, they found hundreds of polyps in my large intestine. Luckily non cancerous, and now I no longer have that intestine - hello j-pouch!</p>
<p>I saw a geneticist who explained everything and did the tests at Mayo. They found my mutation and then were able to check both kids for the same genetic mutation markers. Both kids do not have my mutation. Yay. The disease stops with me.</p>
<p>I did have an interesting conversation with a doctor who told me I was ruining my children’s lives by having them genetically tested- how they wouldn’t be able to get health or life insurance when they got older. That is something to think about if you do get tested, how ‘secure’ the results would be from your insurance…</p>
<p>For me, colon cancer is a deadly and silent killer so with our history we needed to know. And yes, I know that insurance companies can’t use this info, but you never know.</p>
<p>For all of you over 50, have you had your colonoscopy yet? What’s up your butt? Find out, because the sooner you get rid of those pesky polyps, the better. --end rant-- :)</p>
<p>Chuckle, thanks for your frank and informative post.
My H doesn’t have " the gene" for familial polyps but clearly has something close. It would be nice if we knew what it was and how it was passed on.
In the meanwhile, I do remain worried about genetic testing records and the possibility of those results coming back to harm our kids.
If I have the test and come out positive for BRCA I or II, which is highly likely, and my D gets tested under my insurance and also has the gene, and then is job hunting…I look at my doctor as she says “We don’t have to worry about that anymore, federal law protects people …”.and my eyes glaze over. Yeah, sure.</p>
<p>Yuck, scheduling my 55 year colonoscopy …with my breast cancer diagnosis I also get to be “scoped” twice as often.
Plus I don’t seem to react to the drugs like most people on amnesiacs. They are all happy and acting like kids, I’m nauseous and grumpy.</p>
<p>dragonmom, I’m with you on the “suppposed to remain secret/protected” but you never know. For us it was either get tested or have a colonoscopy for my kids at 13 years of age and then possibly tested every year depending on the results of that first baseline. Plus, we’re military and all their info was submitted under my SSN ID, so hopefully it won’t trace to them. Time will tell. </p>
<p>As far as anesthesia recovery- I’m like you and tend do get “pukey” when I come out of it. I found that telling the anesthesia doctor about my issue, he is then able to do something to make me not so nauseous. You might want to check the next time you go under.</p>