Am I "high risk"?

Nyx · September 2010

Am I "high risk"?

Nyx · September 2010

Hello.

I'm 21, my mother is currently stage IV, her aunt died of breast cancer in her early 40's while my paternal grandmother had both breast and ovarian cancer (she is still alive). I was just wondering if I should discuss my family history with my doctor. My mother was 43 when she was first diagnosed, so she wasn't very young, and her mother and sisters have never been diagnosed. So while I do have a family history, it is not as bad as it could be, but it still seems to be worse than what most people have.

I know it wouldn't hurt to mention it to my doctor, I guess I would just like to know what other people here think. Like I said, none of my aunts nor my maternal grandmother have yet had a BC diagnosis (and I hope they never do!).

Thanks.

LadyinBama · September 2010

Yes, dear, unfortunately this counts as family history. And a first degree relative, defined as mother or sister, makes it more of a risk. You should always tell your doctor about any type family history. It may or may not affect your treatment, but they always need to know.

Take heart, family history is just one risk factor. I had no family history but still got BC. Please talk to your doctor and see when he/she thinks screening will need to start for you.

LadyinBama · September 2010

Yes, dear, unfortunately this counts as family history. And a first degree relative, defined as mother or sister, makes it more of a risk. You should always tell your doctor about any type family history. It may or may not affect your treatment, but they always need to know.

Take heart, family history is just one risk factor. I had no family history but still got BC. Please talk to your doctor and see when he/she thinks screening will need to start for you.

mari55 · September 2010

Has your mother been checked for the BRCA genes? It might be a place to start. In my case no other family members have had BC, but my maternal grandmother died of ovarian cancer. With my diagnosis of stage IV and a new DCIS primary I was checked for the geneS and found to be negative. It just goes to show you never know about these things.

Mari

brca1953 · September 2010

Yes, you need to let your Dr. know so that in the future extra care can be taken in exams. You need to have mammogram and exam annually. At 57 I just found out I am BRCA2, not surprising because of extensive family breast/ovarian cancer history. My mother died when she was 48 and I was in my 20's. I have been vigilent since that time. My sister was just dx with bc so I decided to take the genetic test. Once I found out I was BRCA2 I had my daughter who is expecting her first next January let her Dr. know. She will need to be extra attentive in the future but I'm not suggesting she be tested yet. It's tough to decide what to do but after talking to 2 breast specialist and a genetic counselor I have made the decision to have a PBM soon, tentatively scheduled for end of Nov. I want those grandkids to know me as my kids did not get to know their Grandmother.

Jo

kimberly123 · September 2010

First of all tell you, you are lucky, but you should you need to have the breast X-rays and examination time. Only in this way, you can be on your body is completely assured.

Deirdre1 · September 2010

The suggestions above are good, but you might suggests to your doc that a breast MRI be done as well as Genetic Testing.. But yes, you are most certainly in the classification of "high risk"... it sucks - but it can also be an early warning flag for you to keep vigilant!!! Good luck, Deirdre

Nyx · September 2010

Hi again.

Thank you all for your replies.

I saw my doc today and she said I would receive a questionaire from a hospital which will decide whether I need genetic testing. Given that I have a history on my father's side as well, I would be tested instead of my mother getting tested first.

I just need to ask though. Given my age, are there any benefits to knowing right now? What could I do about it now anyway?

Mouser · September 2010

Hi Nyx --

The only benefits to knowing now are indirect. If you are BRCA positive, that could affect reproductive decisions - whether to have children, or how soon. If you are negative, that could be a huge relief.

Since you have thought of the history, you may find yourself worrying. Knowing what your risk is - only statistically, but still - may give you some peace of mind over the next decades.

You say your mother was "not so young" -- but for bc, 43 is young. She was probably premenopausal, which puts you in a somewhat higher risk category than someone whose family history is all postmenopausal. And i believe screening is recommended to start 10 yrs before the age of the relative's diagnosis, which would mean in 10 yrs for you.

None of this is terribly compelling, and you need to think about your own style of using information. If you would be less anxious by putting it all off for another 10 years, it probably *doesn't* matter, especially if the questionnaire indicates a low probability of being BRCA positive. So much of this game is waiting for something to happen; i personally found it easier to wait knowing that my odds were about double the population odds (family history) - but that's me. It may not be you.

What is essential is that your doctor and you are aware of your family history, and that you work together to go on from there.

All the best!

BrokenHeart · September 2010

Nyx, you are definately high risk as are many of us around here. As for benefits to knowing now, well BC really doesn't discriminate with age as much as many think it does. There are many very young women with BC; too many, so I don't feel there is a sound reason not to know. Your Mother also had her BC before Menopause, and if I were you, I would certainly see reason in at least knowing.

I hope you never get BC!!!

SandyMcFra · September 2010

Hi Nyx, Before deciding if you want to do the genetic test or not, you may want to cover all your bases.. My mom, aunt and sister were all dx'd w/bc..the same aunt w/ovarian. None of them got tested. We were afraid that my sister wouldn't be able to obtain life ins if she tested positive. I was dx'd in Dec 2009 and have just completed my chemo. I was tested and I am positive for the BRAC 1 mutation. I have learned during this process that legislation has been passed that protects me from being discriminated against in the medical insurance world but not in the life insurance world. I could have been denied life insurance had I been tested before I had my life ins policy in place. I'm not sure if this is in every state or just in TN but it's worth looking into. It's so well worth it to know if you are genetically disposed to cancer. It sounds like you and I have similar family history. Just have all your bases covered before being tested. Good luck!

suca1213 · September 2010

Yes, you are in class of "High Risk". Let your doc know your family history, & take a call when & how you should have any sort of diagnosing test.
I hope like your maternal grandmother & aunts, you too live safely!

Laurie_R · September 2010

The only family history of BC that I had was an Aunt on my mothers side. So yes I would by all means discuss your family history with your doctor. I have other cancers in my family, ie lung cancer (mom died from it), blatter & livetoor mets (dad died from them) and this is in my medical records to. I have advised my kids to make sure the history is added to my grandkids med. records. Can't be overly cautious with this desease.

clariceak · September 2010

First, I want to encourage you to continue to be proactive. You're very wise to begin investigating your risk factors while you are young.

As someone else mentioned, the fact that your mother was diagnosed before menopause is significant. I have an maternal aunt who had breast cancer and ovarian cancer (still alive in her 80's!), paternal aunt with bc and my younger sister was dxed with breast cancer a few years. I have Stage 3 breast cancer and was tested for the BRCA gene. It was negative.

The genetic counselor concluded in was a "nonconclusive negative". meaning that there is probably a genetic compenent that hasn't been identified yet.

LISAMG · October 2010

Nyx,

See if you can have your mom tested since she was young at the time of her diagnosis, yes 43 is young to have a possible mutation. I strongly recommend genetic counseling for mom. If she is positive, you would have a 50% chance of being positive OR a 50% chance of being negative too!! Since you have bc/ovca in dad's side, this is important too. If anyone has both cancers, this can be suggestive of a brca mutation, as you indicated with your paternal gm. Best wishes and for being proactive for yourself.

rhondajune · October 2010

My mother passed away 5 months ago due to breast cancer. She was tested for the BRCA but was negative. My concern is that all three of her sisters had breast cancer and the two sisters that had daughters died from breast cancer with one being 30 yrs old. With my mom there is three daughters and we are very concerned as what we should do. Some say do the surgery with reconstruction as we are like 3 ducks sitting in a pond waiting to be hit? Any suggestions?

leaf · October 2010

You may want to see a genetics counselor or see a high risk physician. They should give you your options, and hopefully not press you for one decision or another.

Scientific literature realizes there are probably as-yet undiscovered inherited genes. This from 2005.

Between 9,000 and 18,000 new cases of breast cancer per year in the United States are associated with a genetically defined predisposition. Mutations in BRCA1 and 2 account for greater than 60% of inherited breast cancer. Mutations in additional undiscovered high and low penetrance genes may account for the other 40% of inherited breast cancer cases and possibly a subset of familial breast cancer cases that lacks an autosomal-dominant pattern of inheritance. False-negative rates resulting from gene sequencing of BRCA1 and 2 may be as high as 10%-15%, making the identification of high-risk individuals a complex and often futile process for both patient and physician. As a consequence of technical limitations in BRCA1 and 2, genetic testing and the lack of comprehensive breast cancer prediction models that take into account both genetic and environmental factors, we are unable to quantify future breast cancer risk for many patients. http://www.ncbi.nlm.nih.gov/pubmed/15648188 (emphasis mine)

Nyx · February 2011

Hi.

I just thought I'd update. I went for genetic counselling and I do not qualify for testing. My paternal grandmother does, and my mother would have but she passed away in December. If someone on my mother's side develops breast cancer in the future, he/she will qualify.

SarahsMom · February 2011

Nyx, I am so sorry for the loss of your mother. I hope you can live your life and not let the constant fear of BC interfere in any way! Everyone has their "thing" in the family like like heart disease, diabetes, whatever - this is just our "thing." Keep doing your self exams, get very familiar with yourself so you can detect any changes. Hugs to you!

AICa · February 2011

My Mother died of bc when I was 30. I was diagnosed with bc when I was 42 (1989). In 2003 my oldest sister was diagnosed with bc; then in 2007 my other sister was diagnosed with primary peritoneal cancer, a rare cancer related to ovarian cancer; she died a year after her diagnosis. She and I were both tested and both were negative for any mutations.My oncologist and the geneticist both said that my family likely has a mutation that has not yet been mapped.

In 2010, I was diagnosed with bc in the other breast. I finished treatment and recently had a prophylactic oopharectomy.

I have two daughters who are just having children. They were told to have annual mammograms even though they are young.

angelinac · May 2011

The genetics center I went to said that there is no correlation with bearing children and the onset of cancer. My ob/gyn tooted a different horn. Which is it?

vmudrow · May 2011

angelinac - when I went for genetic counseling they asked at what age I had my first child, and if I breast fed - also when I started menstruating etc. I think it does matter when/if you have children.

Moderators · August 2011

Hi angelinac and vmudrow: you may find this information on Risk Factors for Breast Cancer, including Pregnancy History, Breastfeeding History, and Menstrual History helpful at the main Breastcancer.org site. Hope this helps!

--The Mods

Am I "high risk"?

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