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you are never going to believe this

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you are never going to believe this

Postby lmts » 6/19/2009, 11:24 am

My sister had the BRCA test done in 2007 and her doctor said she was negative. She told my sister that I would most likely be the same. I had a few issues last year and wanted a clean bill of health so I asked to have the BRCA test. My results were positive. Over the past few weeks my sister and I have been discussing my options and what i am going through. I asked her if she ever received a copy of her results and she said no but that she would call her doctor and pick up a copy. She stopped by my office this morning after coming from the doctors office and showed me her negative results. She didnt even look at them. I almost fell to the floor.
I opened the folder and her results were POSITIVE!!!! I am speechless and needless to say we are both in shock. She has the same results as me.
Unbelievable!!! I cried and she just stared at me in total disbelief.
thankyou for letting me vent
lmt
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Postby Ruth-M (Guest) » 6/19/2009, 11:29 am

That is unbelievable. How could her doctor be so uninformed? Another reason why I always get copies of every test I have done. There are just too many mistakes made and in your sister's case, this was a big one! I'm sure this is even more difficult to take after thinking she was negative for the last 2 years. Now, I am wondering if my daughter got her test results when she was told she is negative. I'm going to ask her.

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Postby Guest » 6/19/2009, 11:40 am

Could it be positive for some other variant? Not for a mutation but maybe for a variant which could be benign, or of unknown significance?

These tests are never really "just" simply positive for "a gene", the results must spell out which mutations or variants were detected, and it includes both clearly dangerous mutations and uncertain variants, and even sometimes clearly benign variants (depends on a lab, they have different reporting rules for the nonconsequential variants)
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Postby lmts » 6/19/2009, 12:30 pm

her tests are show in bold Positive for a deleterious mutation
result W1815x (5563G>A) same as mine. Her doctor just called and apologized. She said she would expedite any tests or exams they she may need or want.
Ruth.. you are so right... always get a copy.

Lmt
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Postby Mattie » 6/19/2009, 12:36 pm

You gotta be fracking kidding me?! I'm speechless.

And didn't Myriad send a copy to her directly? Everyone in my family who tested got results at their doctor's and a copy in the mail.

Unbelievable.
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Postby SueRogo (Guest) » 6/19/2009, 12:39 pm

Words cannot express my outrage over this. Ruth - you are soo right, I always request copies of surgery reports, pathology, etc.
There are just way too many "oversights" or "miscommunication"? :comforting-hug:
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Postby Stacia » 6/19/2009, 12:42 pm

Holy! That is deplorable, inexcusable,...

Was this a Primary Care doc?

Stacia :flowers:
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Postby Carol/Kayla » 6/19/2009, 12:45 pm

I'm so sorry about the screw-up. This is another reason we should all have our testing through a Certified Genetic Counselor, not a doctor.

My thoughts to your sister and your family.

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Postby Carole K. (Guest) » 6/19/2009, 12:51 pm

Ditto what Ruth-M said about getting copies of every test. I also get copies of all of my doctors' progress notes. Sometimes, what is written is different from what they said during the office visit. Also, doctors have been known to go back and change the progress notes after a problem arises. It is harder to do that if the patient already has a copy. I had LAVH/BSO last Friday. On Monday, I will be going to the hospital to get copies of all of the reports on file there.

Did the doctor give the results to your sister herself, or did someone else in the doctor's office call you sister?
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Postby Guest 11:40 (Guest) » 6/19/2009, 12:52 pm

I am speechless. The doctor may be in serious trouble. I followed your posts on the Mutations forum but never once suspected how this story will unfold!

Lisa, have you used the same physician? Not an oncologist I suppose, and probably (ARRGH!) not a geneticist? Obgyn? Has the doc ordered many genetic tests before misintrepreting your sister's result?

Lack of experience may explain something, but not reading the boldface text across the top of the page????
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Postby jeskachi » 6/19/2009, 12:58 pm

You sister should have gotten a letter and some more information from Myriad directly. Do you know if she got it and just didn't read it? Or did she never get it?
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Postby Mattie » 6/19/2009, 1:09 pm

And furthermore, did he tell her she was negative because he had another patient who tested at the same time? And did that poor patient go out and get a bunch of unnecessary prophylactic surgeries thinking she was positive with your sister's mutation?
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Postby Guest (Guest) » 6/19/2009, 1:20 pm

The doctor's error could have been the difference between life and death. Would your sister consider filing a formal complaint with the state medical board?
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Postby lmts » 6/19/2009, 1:23 pm

The doctor is both my sisters obgyn and mine as well. In 2007 She waited well over a month for the results and had to call the doctor. The doctor called her back and told her she was negative over the phone. That was it. My sister took her word and never really thought about it again until i tested positive 8 months ago. Myraid never sent any copies to my home or my sisters. I went and picked up a copy of my results from my doctors office, however my sister thinking she was negative put it out of sight, out of mind. I do not think the doctor knew how to read them. When I tested positive my doctor had told me that i was her first patient to test positive. (little did she know)!!!
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Postby Guest » 6/19/2009, 1:46 pm

I think that both you and your sister need to find a new obgyn.
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Postby Guest 11:40 (Guest) » 6/19/2009, 2:09 pm

Myriad wouldn't send the results directly to the patient. That's the whole point to have a doctor involved, so the patient recieves some counseling and advice and consolation and explanation, and not just like, kaboom, here comes a bunch of half-intelligible genetic-speak on a form.

And breaking the news on the phone isn't quite serving this purpose BTW.

I wouldn't tell if you have a bad obgyn, really. But it is scary when the physician blurts out the supposed test result of the top of one's head, without ever looking at the lab report... (I'm sure that's what happened ... your sister reminded about the test and the doctor was like, oops, forgot about it, no use looking for the paperwork, i just tell it the way I remember it)
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Postby lmts » 6/19/2009, 2:13 pm

Believe me, we will not be going back to see her. This is the same doctor that told my sister last year that there is no need to have
bi-yearly appts since she is in the general population and not at high risk. Since being positive I now go to Dana Farber for all my appts and I am sure my sister will be going there for now on also.
Although it was a shock, I am just happy that she now knows and that she is healthy.

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Postby SueF » 6/19/2009, 2:22 pm

LMTS,
Wow!!! I am so sorry about your sister having to hear this information in this way! PLEASE email me at: suefriedman@facingourrisk.org . I would love to talk with you and your sister and also follow up. Stories like hers really highlight why it is so critical that people see board-certified genetics experts for genetic testing. I hope you will email me!
Much love,
Sue
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Postby Phyllis from Hawaii (Guest) » 6/19/2009, 2:23 pm

Aloha--If it were me, I would not alert the Physician and would get an attorney to subpeona her records on your Sister--Then check if she documented that your Sister is negative in her chart. Then I would go for the jugular!!! The public needs to be protected from her so that no other Woman will be at risk as her patient---To say that this is irresponsible and sloppy behavior that is alligned with Malpractice is an understatement !!!!!!!

With Aloha---Phyllis :island:
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Postby SueF » 6/19/2009, 2:26 pm

By the way, this is in my opinion the upshot of Myriad's aggressive marketing of BRCA testing to ob-gyns. Shameful. This is one of my platforms that was the basis of my testimony to the Secretary's Advisory Committee on Genetics, Health, and Society in 2008. You can read an overview of my testimony to the Secretary's Advisory Committee in my blog.
Again, sorry that this happened.
Much love,
Sue
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Postby jeskachi » 6/19/2009, 2:42 pm

Maybe I'm remembering it incorrectly... I might have gotten the Myriad paperwork mailed to me by my CGC after she gave me results over the phone (by my request).

I'm glad your sis has you looking out for her!
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Postby BethanyA22 » 6/19/2009, 2:45 pm

Ack, lmt!! How awful that the results were mishandled. You and your sister must be in shock! AT least she now has the info and can move forward. Maybe you two could have joint appointment with a genetic counselor at this time to discuss your test results??

I agree with Sue, this is another reason people benefit by being tested through certified genetic counselors!! I have hear a myriad (pun intended) of stories of doctors mishandling BRCA test results. Thank you Sue for the advocacy on this issue!!!

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Postby Guest » 6/19/2009, 2:46 pm

Sue, it is probably not a result of Myriad's direct-to-consumer campaign (which you and Ellen so eloquently protested against), because the dates don't match. Lisa's sister's test happened before the broad awareness campaign started. But of course it is one more illustration of mishandling of the tests by the unqualified physicians (if qualifications have anything to do with Lisa's story ... the only qualification required from the OB/GYN was basic reading comprehension)

But you are right, if the campaign just makes the OB/GYNs aware about the test without truly educating them, then who knows, we might get more scary stories.

Did you notice, by the way, how Steve argued recently for very broad genetic testing for hereditary breast and ovarian cancer by the oncologists? They may be a little better educated than ob/gyns, but still with gaping holes in their understanding of genetics. What do you think about Steve's ideas, like testing all breast cancer patients for founder mutations?
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Postby Guest » 6/19/2009, 3:12 pm

This just isn't right. I am so sorry.

How soon can your sister get set up with app'ts at Dana Farber? I hope she gets on an appropriate path that she is comfortable with. It's got to feel hard that she placed her trust in the doctor that did the testing, and that trust was broken.

I hope your sister's baseline tests (mammo/mri, etc) with her new team come back OK, and that she is able to move forward.
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Postby Mattie » 6/19/2009, 3:19 pm

I have two copies of my results. One from my CGC and one that came some time after my consult, with Myriad stamped on the outside of the envelope. I always assumed this came from them, not my CGC, as it had their name and not the facility's name on the envelope.

My mother, who tested several months after I did and at a different facility, also got an envelope with Myriad's name on it a number of weeks after she had her consult to go over her results.

I just assumed it was protocol for them to mail copies out directly.
Last edited by Mattie on 6/19/2009, 4:47 pm, edited 1 time in total.
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