Few Female Relatives

Voo · January 2008

Voo · January 2008

I've been curious about how they determine risk when you have very few female relatives.

I'm the only girl in my family. I have 3 brothers (one with prostate cancer). My father had prostate cancer also.

My mother had no sisters either, so I have no maternal aunts.

My father had one sister.

My maternal grandmother had breast cancer late in life, and my paternal grandmother ultimately died from lung or liver cancer (details are vague on that).

When they ask you those risk factor questions, they only ask, Do you have a mother or sister with breast cancer? Doesn't that make a big assumption that you do indeed have sisters? In my family, I think it's really hard to know the risk, since there are so few females.

It's also been making it hard for me to figure out this pre-menopausal crap I'm going through, since all my female relatives had hysterectomies early. I don't have one single relative who actually went through menopause! I have no idea what age I should expect it, or what it was like for anyone in my family.

AnnNYC · January 2008

Voo, you're right that doctors shouldn't just ask about mother and sister(s). Most ask about grandparents. If you ever see a genetic counselor, I think they will definitely ask you about any cancer in siblings, parents, grandparents, aunts, uncles, cousins -- that was my experience with genetic counselor prior to BRCA testing.

Beesie · January 2008

Yes, it's definitely more than your direct female relatives that's relevant when you are assessed for genetic risk for breast cancer.

I had genetic counselling prior to my BRCA test too, and the form that I had to fill out asked for detailed cancer and cause-of death data (if the individual had passed away) about parents, siblings, maternal & paternal grandparents and maternal & paternal aunts & uncles. There also was section where I had to add any relevant cancer history for cousins (on both sides), children and nieces and nephews. So it was a very complete cancer history that they looked at, covering all male & female first, second and third degree relatives on both sides of the family.

On one side of the family I have very few female relatives but there is a prevalence of prostate cancer among the males. That raised as much of a red flag with the genetic counsellor as the breast cancer history on the other side of my family. As it turned out, I fortunately tested negative.

Peaches70 · January 2008

Voo,

I'm in your boat. No female relatives except Mom and grandmothers - no cousins, aunts, or sisters (or neices either). So, when they ask, I say I have no way of answering this. Besides, it's not that important. 80% of BC is in women with NO family history.

As soon as you tell someone you have no history, they dismiss you.

Anne

leaf · January 2008

It can be difficult to get information about going through menopause even if alive and had a uterus. I asked my elderly aunt before she died that question, and she looked at me like I was committing the worst breach of etiquette. She was about 85 at the time, but it was DEFINITELY not a subject that was for conversation. Nor could she tell me when her mother or many sisters went through menopause.

Genetic counselors get it, but not many others. I think unusual patterns of gender in a family was included in some US recommendations about BRCA screening, though.

Marian61627 · January 2008

I'm with Beesie here, I had no women members of the family with breast cancer, but there was so much other cancer and don't forget there was a generation there that didn't go to the doc much so the cancer could have gotten to other organs by the time they did see their doc's. So the genetic councelor drew up a "map" of our family and it was really scary how much cancer there WAS. That's when they suggested I have a breast MRI (please keep in mind that all of my prior testing - mamo's, scans, Brca 1/2 were all negative) and surprise there was the DCIS hiding from all those other tests. I think once they have many, many, more people properly trained with breast MRI's it will become the staple, MRI's I mean, in finding breast cancers. It is expensive NOW but when they are used more they will come down in price that is what happens all the time in medicine. Yes right now they actually "see" too much on an MRI but they are starting to become really adept at determining what they see. I am incredibly grateful to the MRI doc who reviewed my films and called my primary care doc and suggested that I have it biopsied.. Yes it was/is incredibly frightening but when you think that I caught it so early, DCIS Stage0, I am very, very grateful. And I believe the number is 65,000.00 will be diagnosed with DCIS this year (anticipated) a great deal of that is because of the new MRI testing... Thank God - however that being said (believe this or not) my breast surgeon said that he wasn't going to routinely use them!!! Not because of the false positives but because he belives that the body might be able to eliminate the DCIS without any medical intervention - I wonder.. is her wrong? This body of ours is an amazing creation!!! Or was it's because medical INSURANCE doesn't yet cooperate with breast MRI (I had to pay out of pocket and then fight them to get reimbursed AND cancer WAS found!!!) But based on other medical facts.. well I kicked his ass to the curb and got another breast surgeon <wide grin>.. He's the one that pointed me in the direction of genetic testing but then doesn't want to take their advise - and yet when an MRI SHOWS you/us that you can see cancer at it's earlies stage well he's a fool! Or we all are for trusting any iin the medical areana of testing - and believe me I have had those days too!!!

By the way - hi all here - this is my first time posting to the high risk board but actually this is where it all began for me - good luck to all of you!!!

Best,

Marian

beth1225 · January 2008

Voo, I am the only female in my generation on either side of the family. My dad, paternal grandmother and her mother all had bc. Two of dad's cousins had ovarian cancer. I told my gyn about the history long before brca testing was even thought about. She had me going to mammos at the age of 25 because of my dad's dx and a letter from his onc. In the late 80's men with bc were rare to find. When I would go for mammos back then, they always had the same question, only about female relatives. The techs always said the same thing, it didn't matter if men had bc.

Even up until a few years ago the forms were still the same and some techs were still with the same attitude. I was getting tired of educating them. In 1996, my uncle (dad's brother) had us participate in a research study which included brca testing and genetic counseling. Needless to say, each of us tested are brca2+ including the frozen sample from dad. Yes, the counselors definitely "get it". In 2001, I took my first in being proactive and had the bilateral oophorectomy.

In 2006, I started having pains in both breasts and I went to the gyn who referred me to an onc who ordered an MRI. They found lots of micrcocalcifications (as usual) and did another biopsy (this was my 3rd). All turned up negative. I was very lucky and have a high school classmate who is a breast surgeon and had been helping with my surveillance over the years. He suggested getting rid of the time bombs and recon is an option.

I started researching and found this website and began looking into what I was going to do. I got a lot of help and support.

The other place with lots of info on genetic testing, counseling and support as well. FORCE is a wonderful place for people who are brca positive. Their website is www.facingourrisk.org. They have a discussion board as well and an Outreach Program in the major cities. I did end up last May with PBM with immediate recon, one-step alloderm with saline implants. I have had some complications but feel that the decisions were ones that helped save my life even thought they later found DCIS.

Please feel free to email me if you have any questions I can help with. Either bethpknits-pink@yahoo.com or larryandbeth1@verizon.net.

Hope I was of some help.

moemeowster · January 2008

Voo,

I also am the only girl...have 3 brothers. My faternal grandmother was the only one to have bc. She passed away a yr before my parents got married. My mother told me "she had the breast cancer that turned her breast to stone." That is advanced cancer and we are talking back in the early '50's this happened. No females on my mothers side had bc. I was diagnosed in 6/07 with bilateral bc. Both of my parents have passed away of lung cancer...dad in '94 and mom in '04. I was tested for BRAC1 & 2 and glad to say that it was neg. I have 4 nieces and a granddaughter and I just turned 49.

As far as menopause when we (females) are born we have a our determined number of eggs in our ovaries. Once we have used all of our eggs we go into menopause. My mother and I were in our early 40's and there are some women that don't go into menopause til their 50's. I did not have hot flashes but had flushes where I would turn red and feel myself get warm. One sure bet is the night sweats where you wake up with your neck and hair drenched. I had a hyster when I was 31 but had one ovary removed. As "leaf" states it is hard to get info because we don't know how many eggs we have when we are born. Unlike males that keep producing sperm. Don't look for it til your 40's or beyond unless you have a complete hysterectomy and both ovaries are removed....that is called surgical menopause.

Live everyday as a new day and enjoy it...don't dwell on negatives.

Linda

Blinx · February 2008

I do think numbers are skewed, since many women have no close female relatives. I'm another with 3 brothers! No aunts or cousins on my dad's side. No daughters. My mom died of another type of cancer. However, I've got tons of aunts and female cousins on my mom's side. Lots of different types of cancer (due, I think, to smoking), but no bc.

As far as menopause, I just asked my gyn about the "1 year" measure -- no periods for a year usually means menopause. I went for about 16 months with nothing, and then 2 periods in a row. He attributed it to pre-menopause. Go figure!

lvtwoqlt · February 2008

I am in the high risk group with aunt ovarian and mom BC. That is why I did preventive mast.

Sheila

Anonymous · February 2008

Your family history is based on whatever you have, even if it contains very few female relatives. (if you have no sister, daughters, or aunts, then it would be based on your mother and yourself and possibly grandmother (but she would be a secondary relative rather than a primary). They also look at the males in the family history--any with bc or prostate cancer. They also look to see if any history of ovarian cancer.

otter · February 2008

Voo, I think you're right to question the focus on "female relatives." I think if you get away from the standard history forms they use in a doctor's office, there is more attention paid to cancer in male relatives (especially prostate cancer) and to breast cancer in second-degree relatives.

For instance, my dad has only 1 brother (no sisters) and my mom has 3 brothers (no sisters). My mom has not had BC, nor has my sister (my only sibling). I do have female 1st & 2nd cousins on both sides of the family. None of the women of my generation or my parents' generation has had BC (except me, of course). That family hx was pretty boring, and not considered "at risk" by my GYN. (He doesn't know I have BC yet.)

So what? So, this: my maternal grandmother had BC, and my mom's 1st cousin (maternal grandmother's sister's daughter) died of BC. Two of my mom's 3 brothers have (or have had?) prostate cancer. That family hx was very interesting to the oncologists at the university cancer center where I'm being treated. They've referred me to a genetic counselor to pursue a possible familial link. Unfortunately, my appointment isn't until late March, which will be 6+ weeks after my mastectomy.

So I think it depends on who you're asking. Some people are not ignoring the lone female who has BC amidst a family tree full of males.

otter

Anonymous · February 2008

This is an interesting question. Im brca2 positive. I went to a genetic counsellor. She did a very thorough history of all my relative. BRCA2 puts you at risk for breast, ovarian, prostate and pancretic cancer.

When she did my genetic profile I found out things I didnt know.

...Mother and maternal aunt had breast cancer

...Maternal grandfather had pancreatic cancer

...Sister had ovarian cancer

...Paternal grandmother had ovarian cancer.

Just my opinion, but it seems like the questions at a PCP office are more directed towards high blood pressure, heart disease, diabetes, etc.

Nicki (aka chemosabi)

beth1225 · February 2008

Nickie, my GP is wonderful doctor but I think you are right. Even the diabetes is sometimes controlled better by an Endocronologist. Which leads me to the genetic cousnelors. They really know so much more and delve into oher areas. We did our genetic profile by my uncle doing a family tree.

My gyn ignored the fact my dad had bc when I went to him back in the early 90's. So I switched gyn's and the new one stood up and took notice. Once again, you have to be your own best advocate!

CalGal · February 2008

A great answer and example to this question (and the flaws of only looking at first degree relatives) can be found by LisaSDCA on the Triple Negative thread under the topic Genetic Testing. This pertains to the BRCA risk, 1 or 2 and not just Trip Negs.

CalGal

Few Female Relatives

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