Hi! I'm your long-lost cousin! Guess what, I had cancer too!
August 12, 2011 6:40 AM Subscribe
What's the nicest and most tactful way to contact a long-lost relative to tell her about possible family/inherited health issues without seeming like I'm popping up to drop a bomb?
Long story short: I found out that my first cousin on my father's side, whom I have seen maybe once in forty-odd years, was diagnosed and treated with breast cancer. Apparently she wrote my dad a letter which I never saw, and my mom told me after the fact.
What with one thing and another (death in the family and more fun stuff) I never thought to get in touch with her. I'm now thinking that I should. Not to be buddies, but to let her know that I, her first cousin, was also diagnosed with breast cancer (and at a comparatively young age - 43). Cousin apparently has two young-adult daughters, and they might want to be extra-vigilant knowing that BC runs in the family.
All the genetic testing stuff I read about mostly talks about close maternal relatives. "Mary" is a paternal first cousin. Still, if two first cousins get BC, there might be a family pattern that her daughters should know about. I don't know if it's even worth it with cousins, but it might be.
I am looking at tracking her down on Facebook or LinkedIn (I know her first and last name and the town where she lives) and starting out with "Hi, Mary. I don't know if you remember me, this is your cousin Rosie, your uncle John's daughter. How have you been, I hear you have two daughters, how are they? How about those White Sox?" and then mention the cancer-bomb after some small talk and connection is established.
If I get a new friend out of this, that's a nice bonus, but I feel a duty to talk about family health history - even if first cousins are pretty distant, if both of us had breast cancer, maybe her daughters will want to be extra-vigilant. If you were the long-lost cousin, how would you want me to go about spilling the family-health-history beans?
Long story short: I found out that my first cousin on my father's side, whom I have seen maybe once in forty-odd years, was diagnosed and treated with breast cancer. Apparently she wrote my dad a letter which I never saw, and my mom told me after the fact.
What with one thing and another (death in the family and more fun stuff) I never thought to get in touch with her. I'm now thinking that I should. Not to be buddies, but to let her know that I, her first cousin, was also diagnosed with breast cancer (and at a comparatively young age - 43). Cousin apparently has two young-adult daughters, and they might want to be extra-vigilant knowing that BC runs in the family.
All the genetic testing stuff I read about mostly talks about close maternal relatives. "Mary" is a paternal first cousin. Still, if two first cousins get BC, there might be a family pattern that her daughters should know about. I don't know if it's even worth it with cousins, but it might be.
I am looking at tracking her down on Facebook or LinkedIn (I know her first and last name and the town where she lives) and starting out with "Hi, Mary. I don't know if you remember me, this is your cousin Rosie, your uncle John's daughter. How have you been, I hear you have two daughters, how are they? How about those White Sox?" and then mention the cancer-bomb after some small talk and connection is established.
If I get a new friend out of this, that's a nice bonus, but I feel a duty to talk about family health history - even if first cousins are pretty distant, if both of us had breast cancer, maybe her daughters will want to be extra-vigilant. If you were the long-lost cousin, how would you want me to go about spilling the family-health-history beans?
If my mother had breast cancer, and a long-lost cousin contacted me to say, I have breast cancer so you might want to know it runs in the family, I would think, no shit Sherlock, my MOM has it. Is it possible this is about more than warning them? It's OK if you just want to reconnect, you don't need an excuse.
posted by ThePinkSuperhero at 6:46 AM on August 12, 2011 [12 favorites]
posted by ThePinkSuperhero at 6:46 AM on August 12, 2011 [12 favorites]
Okay, so Mary had breast cancer; it wasn't her mother? And you were diagnosed as well, and you're concerned that Mary's daughters might not be vigilant about breast health? I think it's nice that you want to reach out and share family health information and I also think that Mary's daughters will already be vigilant about breast health, since their mom had breast cancer. I personally don't think there's anything wrong with contacting Mary. I think I would appreciate the additional family health information. As for the way to go about it, is there another family member who does maintain contact with Mary? I think that would be far less creepy (? maybe) than being tracked down via facebook or LinkedIn. If that's your only option, though, and you really want to do this, I think it's okay.
posted by cooker girl at 7:13 AM on August 12, 2011
posted by cooker girl at 7:13 AM on August 12, 2011
Nthing that they're likely already quite vigilant. Having a parent with cancer is a pretty big risk factor, and having it happen to someone they've known all their life has a ton of impact. One of my parents had cancer, and it doesn't matter that none of my other relatives have been diagnosed; I know I seriously need to watch out. It will be helpful information for them, but not super-duper necessary.
It'd be good to say hi and maybe show some solidarity, though. It doesn't sound like there's any bad blood here, so there's no reason not to try and reconnect. Probably the worst thing that could happen is you don't become close friends.
posted by Metroid Baby at 7:20 AM on August 12, 2011
It'd be good to say hi and maybe show some solidarity, though. It doesn't sound like there's any bad blood here, so there's no reason not to try and reconnect. Probably the worst thing that could happen is you don't become close friends.
posted by Metroid Baby at 7:20 AM on August 12, 2011
I wouldn't try to get in touch in a friendly way when what you really want to talk about is health. I also don't think her daughters need a lot more warning on the genetic side of things. If you want to get the information to her, though, or just establish contact as family or as cancer survivors, or just express concern, do it. You could also phrase your giving of information in the context of asking for information:
Dear Mary, I was surprised and sad when my dad - your Uncle John - mentioned to me that you had been fighting breast cancer (N years ago). I'm very happy to hear that your treatment was successful, and I wish all the best for you and your daughters. In some sense, I shouldn't have been surprised, as I have also (as much about your cancer you want) - but I hadn't realized until now that mine was not an isolated incident. Do you know of anyone else in our family who has also had breast cancer? (Do you know of other issues our family genetics may be prone to?)
posted by aimedwander at 7:26 AM on August 12, 2011 [8 favorites]
Dear Mary, I was surprised and sad when my dad - your Uncle John - mentioned to me that you had been fighting breast cancer (N years ago). I'm very happy to hear that your treatment was successful, and I wish all the best for you and your daughters. In some sense, I shouldn't have been surprised, as I have also (as much about your cancer you want) - but I hadn't realized until now that mine was not an isolated incident. Do you know of anyone else in our family who has also had breast cancer? (Do you know of other issues our family genetics may be prone to?)
posted by aimedwander at 7:26 AM on August 12, 2011 [8 favorites]
Genetic counselors can help you understand the potential risks to other family members. That's a good place to start. As you've already found, assessing potential risk is tricky---and sharing that assessment of risk with family members is fraught with emotional landmines all the way around. Some people want to know, others don't.
In your case, it does sound like a "no shit" situation for your cousins, but you shouldn't assume that sharing the info will make you a hero. You could take some flak for it.
Hence the genetic counselor. Get your science right, and seek advice from someone who has worked with a number of families around these issues, who can prepare you for the broadest range of responses.
posted by vitabellosi at 7:32 AM on August 12, 2011
In your case, it does sound like a "no shit" situation for your cousins, but you shouldn't assume that sharing the info will make you a hero. You could take some flak for it.
Hence the genetic counselor. Get your science right, and seek advice from someone who has worked with a number of families around these issues, who can prepare you for the broadest range of responses.
posted by vitabellosi at 7:32 AM on August 12, 2011
As a cousin, you're not a first-degree relative, but it's still useful data when diamgramming the family and incidence of cancer. Yes, the daughters are likely aware -- so they should be grateful for this additional data point.
The personal aspect of reconnecting is separate, and can be treated as such in any letter or call.
I encourage you to buld whatever ties you can. You may find a new friend, or be able to serve as a resource for younger generations. heck, maybe al you will get is additional data for your genealogy project...but it's something you didn't have before. Go for it!
posted by wenestvedt at 7:35 AM on August 12, 2011
The personal aspect of reconnecting is separate, and can be treated as such in any letter or call.
I encourage you to buld whatever ties you can. You may find a new friend, or be able to serve as a resource for younger generations. heck, maybe al you will get is additional data for your genealogy project...but it's something you didn't have before. Go for it!
posted by wenestvedt at 7:35 AM on August 12, 2011
Nthing that the daughters are likely already vigilant. Contact her if you want to catch up, but don't bother if it's just about the cancer.
posted by amro at 7:39 AM on August 12, 2011
posted by amro at 7:39 AM on August 12, 2011
I think re-connecting with relatives is always a good thing, and you may like the additional support of having someone in the family with experience with breast cancer.
But I don't think you are under any moral obligation to tell her if you are not otherwise inclined to re-connect nor do I think the information is really medically relevant. As others have said, the real red flag for the daughters is their mother's breast cancer (first-degree relative) so throwing in a second cousin on dad's side of the family is unlikely to make the risk seem more portent. My mother's sister died of breast cancer in her forties, but when I give my medical history doctors are kind of 'meh' about it because she's only a second-degree relative. You are at least three degrees removed from from her daughters and anyway, only 15% of women who get breast cancer have a relative who had it.
posted by looli at 7:49 AM on August 12, 2011
But I don't think you are under any moral obligation to tell her if you are not otherwise inclined to re-connect nor do I think the information is really medically relevant. As others have said, the real red flag for the daughters is their mother's breast cancer (first-degree relative) so throwing in a second cousin on dad's side of the family is unlikely to make the risk seem more portent. My mother's sister died of breast cancer in her forties, but when I give my medical history doctors are kind of 'meh' about it because she's only a second-degree relative. You are at least three degrees removed from from her daughters and anyway, only 15% of women who get breast cancer have a relative who had it.
posted by looli at 7:49 AM on August 12, 2011
Response by poster: Given the information, I probably won't track her down at this time. I know that the daughters are probably vigilant anyway, given the family history, but since I had BC at such a comparatively young age (pre-menopause) I was wondering.
I am going to consider getting in touch as a friend sort of thing; I never really got to know my dad's side of the family all that well (for reasons unclear, and it seems, not for lack of trying on THEIR part). I feel bad about being estranged from so much of my family.
Finally, my oncologist has referred me to genetic testing, because my mom also had BC (and died of it). I get the feeling that there is going to be a problem with the genetic testing in my case. I am an only child. Both my parents had one brother each. My "Cousin Mary" had only brothers. Genetic testing for things like breast cancer seem to work best with large families with more than one female sibling in each generation (I know men get breast cancer too, but it's so much rarer).
Thanks everyone - I think I will mark this "resolved" though I know it's a new thread, because so many of the answers state the same thing.
posted by Rosie M. Banks at 8:06 AM on August 12, 2011
I am going to consider getting in touch as a friend sort of thing; I never really got to know my dad's side of the family all that well (for reasons unclear, and it seems, not for lack of trying on THEIR part). I feel bad about being estranged from so much of my family.
Finally, my oncologist has referred me to genetic testing, because my mom also had BC (and died of it). I get the feeling that there is going to be a problem with the genetic testing in my case. I am an only child. Both my parents had one brother each. My "Cousin Mary" had only brothers. Genetic testing for things like breast cancer seem to work best with large families with more than one female sibling in each generation (I know men get breast cancer too, but it's so much rarer).
Thanks everyone - I think I will mark this "resolved" though I know it's a new thread, because so many of the answers state the same thing.
posted by Rosie M. Banks at 8:06 AM on August 12, 2011
Genetic testing for things like breast cancer seem to work best with large families with more than one female sibling in each generation
Where did you get this idea? The whole point of genetic testing for disease risk is that what they are testing for is entirely in your DNA. If you have genetic test results, the genetic tests of the rest of your family are irrelevant. That's not to say the medical history of your family is irrelevant, but genetic tests of the rest of your family will not tell you anything that a test on yourself won't.
posted by grouse at 9:23 AM on August 12, 2011
Where did you get this idea? The whole point of genetic testing for disease risk is that what they are testing for is entirely in your DNA. If you have genetic test results, the genetic tests of the rest of your family are irrelevant. That's not to say the medical history of your family is irrelevant, but genetic tests of the rest of your family will not tell you anything that a test on yourself won't.
posted by grouse at 9:23 AM on August 12, 2011
I was just asking my doctor if I need to start getting mammograms earlier than most because my paternal aunt had breast cancer in her 30s. My doctor said that I didn't need to worry about it unless it was a maternal relative. I am not a doctor, but my doctor is a doctor, and that is what she told me.
posted by kamikazegopher at 9:30 AM on August 12, 2011
posted by kamikazegopher at 9:30 AM on August 12, 2011
I was just asking my doctor if I need to start getting mammograms earlier than most because my paternal aunt had breast cancer in her 30s. My doctor said that I didn't need to worry about it unless it was a maternal relative.
Your doctor's understanding of the genetics is wrong. The most prominent breast cancer genes, BRCA1 and BRCA2, are both carried equally by men and women. That's not to say that a single case of a paternal aunt with early-onset breast cancer means you are at a high risk, or that mammograms are indicated, but whether the aunt is maternal or paternal makes little difference.
posted by grouse at 9:45 AM on August 12, 2011 [1 favorite]
Your doctor's understanding of the genetics is wrong. The most prominent breast cancer genes, BRCA1 and BRCA2, are both carried equally by men and women. That's not to say that a single case of a paternal aunt with early-onset breast cancer means you are at a high risk, or that mammograms are indicated, but whether the aunt is maternal or paternal makes little difference.
posted by grouse at 9:45 AM on August 12, 2011 [1 favorite]
re: testing for cancer in big families:
It's easier to consider the possibility of genetic mutations in big families because the gene has more chances to express itself. Like, if you had eight sisters, and there was a genetic mutation in the family which predisposed folks to breast cancer, you might have more than one incidence of cancer.
It's also easier to test after one person in the family has already tested positive and you know where, and on which gene, to look.
That said, I'd imagine that a genetic counselor might well encourage genetic testing, and once you actually send in your blood, they should be able to do a comprehensive search for at least the BRCA mutations, even though you don't have a big family.
Good luck, Rosie!
p.s. on preview, what grouse said is right; you could have BRCA mutations on your paternal side (though obviously the cancer of your paternal cousin can't be related to that of your mother).
posted by hungrytiger at 9:48 AM on August 12, 2011
It's easier to consider the possibility of genetic mutations in big families because the gene has more chances to express itself. Like, if you had eight sisters, and there was a genetic mutation in the family which predisposed folks to breast cancer, you might have more than one incidence of cancer.
It's also easier to test after one person in the family has already tested positive and you know where, and on which gene, to look.
That said, I'd imagine that a genetic counselor might well encourage genetic testing, and once you actually send in your blood, they should be able to do a comprehensive search for at least the BRCA mutations, even though you don't have a big family.
Good luck, Rosie!
p.s. on preview, what grouse said is right; you could have BRCA mutations on your paternal side (though obviously the cancer of your paternal cousin can't be related to that of your mother).
posted by hungrytiger at 9:48 AM on August 12, 2011
Best answer: Seven years ago my immediate family would have said that we had zero instances of breast cancer. Then my youngest sister found a lump. Because of being of Ashkenazi descent her Dr. encouraged her to work with a geneticist. Turns out my fathers mothers side is riddled with BC going back generations.
My own Dr. insisted that if it wasn't on my mothers side than my risk level was normal...
Wrong! With this genetically based risk, known as BRCA, you can inherit the gene from either parent and from both parents.
Often medical information, especially about "female issues" are passed and known by women in a family. Many times men just aren't in the loop. Also, a death from breast or ovarian cancer used to be hush-hush - so accurate knowledge about several generations ago may not exist.
Then add the reality that many people may not be aware of accurate ethnicity of their parents and grandparents. The cases of descendants of secret Jews who came to the Americas due to the Spanish Inquisition is a case in point:
http://www.smithsonianmag.com/science-nature/san-luis-valley.html
Genetic testing for BRCA can be done on an individual. If you know you are at risk for a specific strain the testing can be strain specific and less costly than looking for multiple strains. But you don't need a big family in order to test!
Complete information helps each person take the steps they feel is appropriate for their future. Not everyone makes the same decisions, some people are angry about having the information. Some people are thankful to be warned so they can be more vigilant or prophylactic. Either way, if providing the info saves a life it is well worth the possibility of seeming pushy or inappropriate.
The organization FORCE (facing our risk of cancer empowered) is a fantastic resource for those with genetically based breast or ovarian cancer or predisposition.
http://www.facingourrisk.org/
Most people are now aware of the importance in knowing family history in regards to health issues. A letter or e-mail mentioning a family health issue will most likely get a response, then the specifics can be discussed. My family has had a number of new relationships develop from this method of reaching out. Only one relative responded negatively. Then 4 years later she got breast cancer and decided to do genetic testing. She was positive and finally shared the information with her children. Her daughter tested positive and decided to have a prophylactic double mastectomy. When her breast tissue was examined they found several cancerous lumps which had not shown on her mammogram.
posted by cat_link at 3:16 PM on August 12, 2011
My own Dr. insisted that if it wasn't on my mothers side than my risk level was normal...
Wrong! With this genetically based risk, known as BRCA, you can inherit the gene from either parent and from both parents.
Often medical information, especially about "female issues" are passed and known by women in a family. Many times men just aren't in the loop. Also, a death from breast or ovarian cancer used to be hush-hush - so accurate knowledge about several generations ago may not exist.
Then add the reality that many people may not be aware of accurate ethnicity of their parents and grandparents. The cases of descendants of secret Jews who came to the Americas due to the Spanish Inquisition is a case in point:
http://www.smithsonianmag.com/science-nature/san-luis-valley.html
Genetic testing for BRCA can be done on an individual. If you know you are at risk for a specific strain the testing can be strain specific and less costly than looking for multiple strains. But you don't need a big family in order to test!
Complete information helps each person take the steps they feel is appropriate for their future. Not everyone makes the same decisions, some people are angry about having the information. Some people are thankful to be warned so they can be more vigilant or prophylactic. Either way, if providing the info saves a life it is well worth the possibility of seeming pushy or inappropriate.
The organization FORCE (facing our risk of cancer empowered) is a fantastic resource for those with genetically based breast or ovarian cancer or predisposition.
http://www.facingourrisk.org/
Most people are now aware of the importance in knowing family history in regards to health issues. A letter or e-mail mentioning a family health issue will most likely get a response, then the specifics can be discussed. My family has had a number of new relationships develop from this method of reaching out. Only one relative responded negatively. Then 4 years later she got breast cancer and decided to do genetic testing. She was positive and finally shared the information with her children. Her daughter tested positive and decided to have a prophylactic double mastectomy. When her breast tissue was examined they found several cancerous lumps which had not shown on her mammogram.
posted by cat_link at 3:16 PM on August 12, 2011
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posted by litnerd at 6:44 AM on August 12, 2011 [3 favorites]