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Walk a mile in an adoptees shoes…

13 Sep

Hypothetical scenario that plays out more times than you would think…and for different diseases throughout life…

Karen age 25 is scheduled to go to the doctor today for her regular yearly examination, as she understands she has to be pro-active in preventive health care.

She and Dr. Jones sit and visit for a couple of minutes and the doctor asks her how she has been over the past year.

Karen answers that she hasn’t been sick other than the a couple of colds, but her monthly cycle has become more painful to the point that she is missing a day or two from work each month.  Dr Jones asks her if fibroids or endometriosis runs in her family and specifically her mother and then remembers – oh yes, you were adopted so you probably can’t answer that type of question.  So instead she offers suggestions on how to minimize the pain, and if none of those work then what they can try instead.

Then Dr. Jones goes on to ask her if she does monthly breast exams and if she has noticed any changes. Karens answer is yes, that is part of her pro-active preventative health care routine and that no, she has not found any changes or lumps.  Karen then asks Dr. Jones about whether or not she should get early mammogram screening as she has just turned 25, or perhaps even tested for the BRAC genes just to be safe.

Screening (right-click to open in a new window)

For most women under age 35, breast cancer screening is not part of their annual health routine. But for women with a family history of breast cancer, experts say screening should begin as early as age 25.

Memorial Sloan-Kettering Cancer Center recommends that women who have a first-degree relative diagnosed with breast cancer should begin yearly mammograms starting 10 years earlier than when the youngest family member was diagnosed. For example, if a mother was diagnosed at age 42, her daughter should begin annual mammography testing at age 32. For women in this risk factor group, experts also recommend clinical breast exams at least twice each year and monthly, self exams beginning at age 20.

Once again, Dr. Jones asks if that info was provided in the history she was given at the time of her adoption 25 years ago.  Karen replies that it was noted that a great-aunt on her mother’s side had breast cancer.  Dr. Jones asks if it was early age onset or later.  Karen replies she does not know, it wasn’t included.

The average American woman has a 12% chance of developing breast cancer in her lifetime; this figure can more than double for a woman with a family history of breast cancer.

According to the Centers for Disease Control, women with a “first-degree” relative — such as a mother or sister — who had breast cancer have an approximately 30% chance of developing the disease, too. If that first-degree relative is diagnosed with bilateral breast cancer (breast cancer in both breasts), the risk jumps to 36%.

Among those with “second-degree” relatives (grandmother, aunt or niece), lifetime risk is about 22%. For those with a “third-degree” relative (cousin, great-grandparent or great-aunt) who had breast cancer, the risk is 16%.

Dr. Jones shakes her head and explains that it is highly doubtful that her insurance will pay for either when she only has a known family history for breast cancer in a third degree relative.  That a great aunt’s diagnosis makes her risk 16% which is not much higher than the 12% risk all females in the general population have.  If there was a first or second degree relative breast cancer diagnosis info they probably would approve it, but without that info chances are insurance will not pay for early mammography screening, or genetic testing, no matter how hard they fight.

Karen gets home and ponders whether she could afford to get the genetic tests and the early screening each year.  Then starts to wonder if she should contact her adoption agency and decides on that as a first step.

Karen makes contact with the agency and finds out it will cost her $150.00 to get her non-id and medical info from the agency and does that, only to find out the medical info is the same 25-year-old info she already has.  Her adoption agency does offer a limited confidential search service that costs way more money with no guarantees so she wonders what would be better, search or pay out-of-pocket for the screening each year.

In reality Karen – you are just an adoptee – suck it up – medical history is only important for the non-adopted.  You just have to hope you won’t be one of the women who are diagnosed at an early age before the recommended screening age OR pay for early screening on your own dime because your adopted.

What would you do if you had no knowledge about whether or not breast cancer ran in your family and at what age?

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3 Comments

Posted by on September 13, 2011 in Adoption, adoptive parents

 

Tags: , , , , , , , , , , ,

3 responses to “Walk a mile in an adoptees shoes…

  1. Melynda

    September 14, 2011 at 11:17 am

    So this leaves me wondering: What can I, as a first mother do, to make this easier on my daughter? Should I write out a detailed and updated medical history and send it to her without her asking for it? Or should I just wait for her to ask for it? While I know where she is and how to get a hold of her through FB, she has never responded to any of my communication attempts. I know now how important familial medical history is and want her to have hers but I don’t want to interfere with her life. Conversely, I don’t want her to feel like I am holding that information hostage, either.

    Any suggestions?

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  2. The adopted ones

    September 14, 2011 at 1:01 pm

    Melynda,

    You can start by creating a family health history – good for all of your kids to have. I created mine (after I got it) in an excel spreadsheet. Very similar format to a family tree starting with the oldest generation of info I had and listed nationality (some diseases are more prominent in certain nationalities or come from a founder ie French Cdn), birth year, death year, and then what each had been diagnosed with an approx age of diagnosis. I also listed lifestyle i.e. smoker etc. It created a very easy layout for my doctors to see how often a disease showed up (each generation or skip a generation) and the number of times (people) it showed up. Once you have that done tell her you have it ready for her and want to give it to her AND how it important it is for the info to go both ways. Tell her you intend to update it as it happens or at least every 5 years or something. She’s pretty young right now so may not appreciate the value – but she will.

    You should try to do it for her father as well if possible.

    I tried to point out in the post that what the hypotheical Karen had was at the 3rd degree relative stage which only provides the info on whether or not the disease shows up in every generation (when you have a complete up to date history) and how a mothers aunt is really a 3rd degree relative to the child – but that at the time of surrender the only people OLD enough to really show any adult onset diseases are grandparents, great aunts, great uncles, etc.. That at the time of surrender the mother and any of her siblings, etc. aren’t old enough for the history to be there. Did that make sense?

    I would avoid the agency if possible because in my opinion they are not helpful and rather from all I have heard simply file the info and charge money to access…although those who don’t have contact info should use that method for sure.

    Feel free to email me or let me know if you want me to email you if you want help setting it up.

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  3. Melynda

    September 14, 2011 at 5:12 pm

    Thanks so much for being willing to help me out with this. Will be emailing you.

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