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Topic: Half Genetic BC are inherited from woman's father

Forum: Clinical Trials, Research News, Podcasts, and Study Results —

Share your research articles, interpretations and experiences here. Let us know how these studies affect you and your decisions.

Posted on: Jun 22, 2007 01:13AM

saluki wrote:

Breast cancer genes can come from father
CHICAGO (AP) � A deadly gene's path can hide in a family tree when a woman has few aunts and older sisters, making it appear that her breast cancer struck out of nowhere when it really came from Dad.

A new study suggests thousands of young women with breast cancer � an estimated 8,000 a year in the U.S. � aren't offered testing to identify faulty genes and clarify their medical decisions.

Guidelines used by insurance companies to decide coverage for genetic testing should change to reflect the findings, said study co-author Dr. Jeffrey Weitzel of City of Hope Cancer Center in Duarte, Calif. Testing can cost more than $3,000.

"Interestingly, it's about Dad," Weitzel said. Half of genetic breast cancers are inherited from a woman's father, not her mother. But unless Dad has female relatives with breast cancer, the faulty gene may have been passed down silently, without causing cancer. (Men can get genetic breast cancer, too, but it's not common.)

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Weitzel said doctors often overlook the genetic risk from the father's side of the family.

The study, appearing in Wednesday's Journal of the American Medical Association, looked at the genetic test results from 306 women diagnosed with breast cancer before age 50.

None of the cancer patients in the study had a family history of breast or ovarian cancer.

Among the women with plenty of female relatives, about 5% had BRCA gene mutations. But among those with few sisters and aunts older than 45 (when breast cancer would be likely to appear), almost 14% had mutations of the genes BRCA1 or BRCA2. That suggests that these cancer patients were unaware of their genetic mutations because there were so few women in the family to signal a cancer risk.

The researchers defined few female relatives as fewer than two on either the father's or mother's side of the family.

Women who were adopted and don't know their family medical history should be aware of the findings, Weitzel said. Women whose female relatives died young before breast cancer had time to show up also are affected.

When such a woman gets breast cancer before age 50, she should get a genetic test, said Dr. Noah Kauff, a cancer geneticist at Memorial Sloan-Kettering Cancer Center in New York. That would help her decide whether to have the unaffected breast or her ovaries removed to prevent more cancer. Kauff was not involved in the research, but wrote an accompanying editorial.

"The study allows physicians and patients to make an argument to insurance carriers that, although there's not a family history of breast cancer, it's still reasonable to test and it should be a covered benefit," Kauff said.

Genetic testing helps a woman choose her next medical steps. A woman with breast cancer who has a BRCA gene mutation has a four times greater risk of developing cancer in the other breast and a 10 times greater risk of ovarian cancer than does a woman with breast cancer who has no BRCA gene mutation.

Some women with a family history of breast cancer choose to have a BRCA genetic test so they can decide whether to reduce their cancer risk by removing their ovaries and breasts before any cancer appears. Drug therapy and monitoring with annual MRI tests offer alternatives.

Testing the genes of more women would cost more money, but Weitzel said that won't add significantly to health care costs and will prevent cancer in some of the women.

The study also showed that three commonly used predictive models don't accurately estimate the genetic breast cancer risk for women without a family history of cancer. The American Cancer Society recently based its recommendation for annual MRIs on risk assessments from the predictive models.
Copyright 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

From USATODAY.COM
Susie, member since Jan. 2003 Dx 12/12/2002, IDC, 2cm, Stage IIB, 0/1 nodes, ER+/PR+, HER2-
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Jun 29, 2007 08:34AM Fireweed wrote:

The only breast cancer in my family (until me!) was my father's brother. That counts.

Fireweed Dx 6/1/2007, DCIS, <1cm, Stage 0, Grade 3, 0/4 nodes, ER+/PR+
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Jun 29, 2007 09:04AM saluki wrote:

Quote:
The only breast cancer in my family (until me!) was my father's brother. That counts.



But try to get an insurance company to pick up the tab for
BRAC 2 based on that.

My oncologist didn't see the need when I discussed it with him last month.

My aunt on my father's side died of BC. His family came from Latvia --so who knows anything about any of their historys.

I'm also an Ashkenazai Jew -another predisposing factor.

I don't have 3000 dollars for this. if my Onc doesn't think it medically necessary who would approve it?
Susie, member since Jan. 2003 Dx 12/12/2002, IDC, 2cm, Stage IIB, 0/1 nodes, ER+/PR+, HER2-
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Jun 29, 2007 07:24PM BlindedByScience wrote:

You could try contacting Myriad Genetics and giving them your family history & ethnic origin. They may contact your onc or your insurance company on your behalf. It's in their financial interests to do so, of course.

This link will take you to Myriad's page that includes the following information:

Myriad Resources

Myriad Genetic Laboratories has a variety of specialists available to assist you and your healthcare provider.

1-800-469-7423

Myriad Reimbursement Assistance Program (MRAP)
MRAP specialists can explain how patients can qualify for insurance reimbursement of genetic testing expenses.

Professional Support
Professional support specialists are available to assist with any questions or concerns about cancer risk assessment or the genetic testing process.
helpmed@myriad.com
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Jun 30, 2007 04:09AM beth1225 wrote:

We were very lucky that my uncle got us into a research study at Fox Chase Cancer Center after my dad had died from bc. Their mother and all 5 of her sisters had bc as well as 2 of dad's cousins had ovarian cancer. FCCC also got the path slides from my dad's surgery. We also have an Ashkenazi Jewish history. We all carry the BRCA2 gene mutation and that is why I had the bilateral mast prophylactically.

One thing that was a common misconception until recent years, it was passed through mothers and linked to the sex chromosome. It is not linked that way at all.

Interestingly enough, the BRCA1 and BRCA2 gene mutations were isolated by researchers in Israel who wanted to do something with the unused parts of the blood for transfusions. Because so much of the blood came from Ashkenazie Jews, it was identified as a risk for us. The real risk is with a culture that is kept to itself for the most part and does not marry into the general population around them. For example, the Jewish ghettos of Eastern Europe prior to WW2. Same thing to a small extent with people of Norwegian descent. There is also an ongoing study with women of African descent because so many tribes are and were insular in marriage the same way as the Jews were. Because of so many dilutions once brought to America, it is hard to trace the gene back. But at FCCC, they are making great strides in that too.

OK, my soapbox for the day. I still get the stare from so-called professionals and registration people when I tell them they need to add the paternal side on the questionnaires they have you fill out. It always still asks about who on the maternal side had bc or ovarian cancers. Burns me up.
Love and hugs, Beth "Without Humor, life is a walk, not a joyride." PBM 5/7/2007 www.youravon.com/bethcohen www.freewebs.com/larryandbeth is our family website, please visit me! Dx 1/3/2008, DCIS, Stage 0, 0/6 nodes, ER+
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Jun 30, 2007 10:16AM saluki wrote:

Beth I am in such an odd situation and testing would mean allot to what decision I may make make as well as to my nieces----

My fathers family medical history is unknown except for my aunt who died of BC. Since his other sister died of Diphtheria at 6. the family history is scant.

On my Fathers side also my grandmother's sister also had a child die of Breast cancer.
I would think that this along with my Ashkenazi background
would at least warrant some genetic counseling.

The other sister we know nothing of because when she arrived at Ellis Island she was diagnosed with tuberculosis She not allowed in and was sent back to Latvia.



On my mothers side is an array of oddball cancers and although, not breast cancer I have read that there could be some component or variaton of the BRACA gene ---My mother died of Parotid Cancer (salvary gland Cancer) and her sisters of Pancreatic cancer.

And My sisters daughter died at 13 years old from a crazily
rare (for the age) ocular melanoma.


My oncologist literally poo- pooed the whole idea of
any BRACA involvement with any of this stuff. So, I doubt he'd be my advocate regarding testing.

But here is my true dilemma--and I've wanted to talk about this but I don't even know what thread to put it in.

This takes some prefacing so please hang in there with me and it will all tie together

I fell shortly after I completed rads with so many breaks in my shoulder they just decided to do a shoulder replacement (Arthroscopy) because of the severity---(The orthopedists said the severity of the fractures were due to chemo but of course the oncologists don't agree)---At the same time I had dislocated the shoulder (and tore the rotator cuff)----

For whatever reason (and I did have xrays) The ER decided to pull on my arm and try to put it back in the socket ----not realizing that my shoulder was smashed to bits -and "all the kings men couldn't put Humpty dumpty together again"

The result was massive nerve damage and something called a brachial plexus stretch which would have been bad enough on its own but the Brachial Plexus stretch caused something called RSD Reflex sympathetic Dystrophy or the new label
CRPS Complex regional Pain syndrome which has been a nightmare to treat. In fact I am a Physicians worst nightmare. When you are a Physician you know you are having a bad day when you have an RSD patient walk through the door. LOL

Now since, about 1/2 hr of being in anything but a half reclined position starts my pain ratcheting up to crazy levels -and twenty minutes with my arm hanging down just trying to get grocerys sends my pain levels zooming and recovering from the short outing can take days.------

Well my Pain management specialist whom I love dearly and with whom I probably would not be alive, at this point, has come up with a unique way of cutting back on my pain levels.

Oh yes we've been through dozens of off label use anti-convulsant medications trying to treat the nerve pain component, but to me the only thing worse than having to perpetually lie at an angle----to stop gravity from affecting the pain levels is to loose your brains and lay in a zombie like fog from these neuropathic pain meds for weeks and months on end.----Believe me, I'm familiar with every medication out there used to treat pain whether it be anticonvulsant, antidepressant, muscle relaxants, salicylates or short or long acting opiates. I'm a bouncing board as to what works and what doesn't due to my medication sensitivities. I'm allergic to sulfa and NSAIDs.

And yes I've had the stellate ganglion blocks by anethesiology/neurology and I left when they started talking sympathectomys

Anyway the whole thing has been a balancing act try to control pain with the least amount of side effects. I can't tell you what it means to me to have a Doctor who can think out of the box and keep looking for new solutions and since he just happens to be head of rehabilitaion. I do go in and out of occupational therapy until insurance refuses to pay. Lately he wrote for aquatherapy which was really helping till I overdid and flared the whole thing up.


Yes there is something that may work but it would involve me going to Germany and being put in a 5 day Ketamine Coma and kind of rebooting my sympathetic nervous system---like a computer and its not covered--And in my case since the whole RSD is being ticked off by the brachialplexapathy it may not work anyway.

So as I say my Pain Management specialist thinks if we can
stop the gravity of my breast from putting additional strain on the brachial plexas. He thinks I may get some pain relief from a breast reduction----the less breast the better! Less breast=less pain.

I've seriously been considering his suggestion, and he is going to explain to my breast surgeon. So, my first step would be a consult with my BC surgeon, and then one with a plastic surgeon.

First thing I asked Physiatrist is would they pay for one to be size A or B and leave the DD sitting there. He assured me they wouldn't, but then my PCP said it sounded like something they'd try although he was laughing.

But I'm not the best surgical candidate. They have to take me in early and perform a sympathetic block to stop my body from knowing its being operated on even if I'm getting anesthesia so you don't spread the RSD.

I'm worried that I could do this operation only to find a local reoccurrence within a short time.
Add to that that I've already had rads and my surgeon had said that expanders are not an option once you've had
radiation. I don't feel I could recover at any other kind of reconstruction and may run the risk of sending my RSD full body.

If I was to get the genetic testing and should be BRAC2 I would want to get them removed----I can't help but look at these breasts as my enemies.

BBS-- Do you mean I can bypass my oncologist to get genetic counseling or testing by using Myriad---this is what I don't understand?

I'm so confused as to what to do and what can be done.

Thanks Beth for not making me sound like a loony tune. I mean he's the oncologist and I'm the patient. So I feel like like I'm making much ado about what he feels is insignificant.

I like your soapbox!---I have a soapbox too but its about
inadequately and under treated pain.

Hopefully, we'll get to meet at one of your get togethers.

I'm starting to think if they can take these boobs away I may be able to function upright for more than a half hour
and actually get to King of Prussia without worrying if I can get back.


Hugs
Susie
Susie, member since Jan. 2003 Dx 12/12/2002, IDC, 2cm, Stage IIB, 0/1 nodes, ER+/PR+, HER2-
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Jul 8, 2007 04:02PM Lovin_Life wrote:

Thanks for the info BlindedbyScience.

My fathers sister (my aunt)was dx with bc when she was about 65. She died from a stroke about a year later. Both her daughters (my cousins/my fathers neices) were dx with bc. The oldest dx with positive lymph nodes - and still alive 20 yrs later. I only recently found out that the other sister was dx about 5 yrs ago with DCIS.

No bc on my mothers side. My sister's daughter was dx with bc. There is no bc on my sisters husband's side of the family.

Seems to be a bc link only from our (my sister and me) fathers side of the family.

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