Multiple Family Members with Breast Cancer?
My 55 year old sister and only sibling was recently diagnosed with Stage 3 breast cancer - ER+ PR+ Her2neg. I was diagnosed in October, 2011 with Stage 3 - ER+ PR+ Her2Pos, and our 80 year old mom was diagnosed in June, 2014 with Stage 1 breast cancer - ER+ PR+ Her2neg.
We have extensive family history records - never has there been any known breast cancer in either side of family since mid-1800s. My mom's parents and aunts lived well into their 90s. My dad's family had a lot of cancer - my dad died of pancreatic, colon cancer family history and a few others - but no breast.
Initially, the geneticists at University of Michigan thought the fact my mom and I both had breast cancer was a fluke because I was Her2pos and she was diagnosed in her 80s. But then, along comes my sister. So obviously, one of the first calls we received was from a geneticist. We are filling out paperwork now.
Has anyone else had multiple family members with breast cancer and no family history? Would certainly be eager to hear from you and your experiences!
Thank you!
Comments
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I am BRCA1 and have no family history of breast cancer. I got the BRCA gene from my dad's side (mom tested negative) and there is some other cancers - but no breast. But this family is mostly male.
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Hm, your mum's cancer may indeed be a result of aging and be sporadic (and really, as odd as it is, all three of you could be "sporadic" as unfortunately sporadic cancer can strike more than once in a family) and hereditary risk COULD come from your father's side, pancreatic cancer for example in families with breast cancer is a flag. Risk can hide in families, especially small ones or male dominated ones. While, for example, BRCA2+ male carriers have increased risk of breast cancer it is 6% so still much lower than the "average" woman's risk, and other cancers, like pancreatic and colon, may not necessarily raise concerns (or may not occur). Not saying it is BRCA+ but just giving you idea. I know people who have tested who have NO family history at all and have tested positive for mutations. Not everyone has a mutation WILL get cancer, so it can hide this way as well.
There are these days a few potential mutations known to increase risk, but there is also a lot unknown still as well. I am glad you are now in contact with a geneticist, but be prepared that everything may still come back negative and that does not necessarily mean there is nothing hereditary at play.
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I was diagnosed in 2008; my older sister was diagnosed in 2009. After she was diagnosed, we were recommended for genetic screening. She died in 2010 before hers could be done; I am BRCA2+. My mom and other sister were tested and are both BRCA-, but my mom was also diagnosed with breast cancer last fall. Before the 3 of us, there was only my maternal grandmother who had had breast cancer (in the 1970s). Since my mom is BRCA-, we assume the mutation didn't come from there. My father has declined to be tested, but there's no history of any cancer in his family (many kids, several girls). Weird stuff, this cancer.
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Thanks so much for your posts. I appreciate them very much. A lot of helpful information. My sister's breast surgeon said that she treated one family of 4 sisters all with breast cancer and they came back negative for BRCA gene. She said she still treats them as genetic because she believes that gene has not been discovered as yet. That made sense to me.
While doing the paperwork for my father's side of the family, it seemed the males who had cancer passed it to their daughters. The sons all came out okay thus far. But earlier in the genetic line-up, it went from mothers to sons.
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My oldest sister was diagnosed Stage IV imflammatory BC in Aug 2005 at age 48 (not sure of the hormonal status but I do recall her mentioning she took herceptin and maybe tamox? She passed from the BC in Jan 2007 so I can't ask her now).
My other sis was diagnosed Stage 1A IDC ER/PR positive, Her2 Negative in Sept 2013, age 52. She had a lump and rads and is doing fine.
I was diagnosed w/ Low grade adenosquamous carcinoma, a rare variant of IDC in June 2014, age 49. Mine is weird because it shows as ER/PR and Her2 neg, but it's not actually triple negative cancer. No stage was mentioned, but based on the descriptions on BCO, it was 1A because the tumor was .9 cm and no node involvement. I opted for a BMX because of fmaily history and also the kind of tumor I had develop from intraductal papilomas, and I had those in my other breast, so off they both went! Since i did the MX, they said no rads.They only would have suggested chemo if the tumor had been high-grade, but my kind doesn't respond well to chemo, so i dodged that bullet.
I also have an aunt (father's sister) that had some type of BC, but I don't know anything about it. I have never met her (I have no contact w/ my father's side of the family). My oldest sister told me about it (she had occasional contact with her).
My middle sis and I both came up negative on the genetic testing (Myriad MyRisk) except for some mutation of unknown significance.
Editied to correct date of oldest sis's diagnosis and to add our ages since the are significant.
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every woman in my maternal line had either Breast or ovarian cancer. The two living relatives tested positive for BRCA 1. Then I tested negative. That was in 1992. I was one of the first people in the U.S. Tested for this gene. So I didn't have it as my family did but I am now coming up at 62 with recent surgery for what looks to be breast cancer sooner or later . High risk now but seemingly not genetics inspired. It got me anyway Just by a tad older than the others although only by about five years
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My mum and sister also have breast cancer (maternal grandmother also had it) - none of us tested positive for the BRCA gene. We're all ER+/PR+ HER- though.
The geneticist has said although we tested negative it does look like there's another mutation that they haven't clearly defined yet, so there's some comfort in thinking that the samples we've given (and would offer in the future if needed) might go towards decoding risk factors...something good has to come out of all this.
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There are a number of genes besides BRCA that confer increased breast cancer risk. CHEK2 & PTEN are a couple. I was tested for these before BRCA because both my dad's mom & sister had colon cancer & I had ovarian cancer before the LCIS was found
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I am just so sorry as so many of you had close relatives with breast cancer. It is heartbreaking, and I certainly know how it feels. The information is invaluable to me that you have posted.
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Any of you who had negative test results prior to 2013 should contact your genetic counselor and ask for an update. That was the year our Supreme Court set aside Myriad's patent on BRCA 1/2. Since then, reputable companies have put more broadly based panels on the market frequently at a lower cost than when the monopoly existed. Although still not completely comprehensive, there is so much data out there you really owe yourselves and your families the benefits of all this new information.
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I completely agree with vlnrph. My gen. counselor and insurer wanted to limit my testing to BRCA1/2 only, while my surgeon wanted an additional panel. Thank goodness she won, as there was extremely important information in the extended panel. The BRCA testing would have been a waste of time and money and very misleading.
The gen. counselor did tell me that they are starting to follow up with women who had been negative for BRCA to encourage them to consider an updated panel but it's not happening as quickly as it should. If you've already done BRCA testing the additional expense should be minimal, and probably covered by insurance.
Denise - I'm sorry to hear about your sister's dx. I wish her the best.
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I am still confused about my genetics. My BRCA 1 testing was done in a study setting in 1992. Family members tested positive for BRCA 1 ( the only gene identified at that time ). My test was negative. Now I am at high risk due to ADH. So am I correct in thinking that I don't have genetic BC or at least not what all of my maternal line had? So confused. Should I be retested
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Not BRCA 1 genetic anyway. Even if one of your parents is BRCA positive you only have a 50% chance of inheriting it. The vast majority of breast cancer, 90% as far as they know now, is not genetic
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thanks Melissa. That's what I originally thought but getting confused with these new genetic tests . The BRCA genes are I believe the only high penetrance genes thus fa
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bump
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I have had multiple family members who have had breast cancer -- many have passed away. My sister, my two aunts on my father's side (both who died), my cousins (all) on my dad's side, some who have passed away, some who got mastectomies, and I am a breast cancer survivor. (1996 Stage IIB invasive ductal followed by surgery, chemo, radiation). Since my cancer I've had nearly 10 biopsies and my breast is dense so sometimes nothing shows in diagnostic mammos and ultra sounds; sometimes something does show. My doctor and I recently felt a change in my right breast which again showed nothing in mammo and US. I have never been tested for the BRCA but one of my oncologists believes I have that gene. Now, after all that, I am wanting to do a prophylactic mastectomy with reconstruction because of all the above and even if what is going on right now is nothing more than a seroma from an infection I got from my last biopsy in 2012. Do you think the doctor will go for this. I am sick of continuous mammos and US and MRI breast scans. Your thoughts.
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hartygirl, if you're near an NCI-designated cancer center, it might be worth making an appt for a thorough evaluation, which would include talking to a genetic specialist who can advise you if you would benefit from genetic testing. If you were to find out you have the BRCA gene, I would think that would factor heavily into the decision re. a profylactic mx, but they would give you a lot of stats to help you understand your real risk and make that decision. If you don't have the BRCA gene, they can still guide you re. your best options.
Here's a list of NCI-designated comprehensive cancer centers where you'll find the kind of breast experts who are best qualified to guide you in this decision, mostly because they see the most breast cancer, breast cancer recurrences, BRCA+ patients, etc., have great breast surgeons & breast reconstruction docs, and are up on the latest research. http://www.cancer.gov/research/nci-role/cancer-cen...
Good luck, and let us know what you find out. (((Hugs))) Deanna
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On my Mom's side of the family. With 7 girls, 5 have either breast, ovarian or uterine cancers, ironically, my Mom is cancer free. Within my nuclear family, 4/5 of us dx with cancer, including my sister and I both with breast cancer. Both families everyone is BRCA1/2 negative. I am awaiting a 17 gene panel results if for nothing else to put the genes out there to someday find what is the problem. My geneticist says I have an interesting family. Not really what you want to hear.
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My mom's side:
Grandma died of metastatic breast cancer in her 40s,
Aunt died with metastatic ovarian cancer (renal failure),
Aunt treated for breast cancer in 40s or 50s,
Uncle had breast tumor removed in his 40s or 50s,
My mom had five kids, nursed faithfully, then had female parts removed after last one (reduced risk),
Other aunt had female parts removed due to some kind of pre-cancerous thing (reduced risk).
I was diagnosed with ER+/PR+/Her2- metastatic breast cancer at 39 years old in 2011, and
My sister was just diagnosed with breast cancer in May 2015 (she refuses to learn her pathology).
Yup....I have the BRCA2 mutation. I wish we would have pieced this all together a long time ago so I could have had a chance at reducing my other risk factors which were high. I have never had children which is already a risk....and other things increased my risk along the way. This genetic info is new to me and I'm still trying to process things. My first oncologist did not give me a chance at genetic testing. He mentioned it early on but changed his mind saying that my cancer was from chemicals (huh?).
Carrie
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Oh my, these stories are quite something and rather horrifying for all some of you have been through! I thought my family was bad.
dlb823 - Great advice. My sister is being seen and tested at an NCI facility - University of Michigan. She is seeing a geneticist this week and will have testing. They are starting with her because she has children and I do not. Her Oncologist (also my Oncologist) and other specialists at U of M said that if she has the gene she should strongly consider and they recommend a double MX. She has had a Lumpectomy and Lymph Node dissection to this point.
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While it's truly horrifying for people like us I feel a little less lonely now that we are sharing these family horror stories. I knew twenty years ago that our situation was not random. This was just on the cusp of the first BRCA 1 testing. I went to the Dana Farber Cancer Center and Dr Garber listened to me. Sadly , twenty years later she is still listening to me😣. In my second round of testing because negative BRCA 1 in the presence of family with that mutation did not explain it for me. I thought it would but it didn't . Sad and bummed to have to go through this again. But if I come up with another. Mutation I will push for PMX and this will make a stronger insurance case .... I hope
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In talking with my sister's breast surgeon and our mutual Oncologist, they were telling us stories about some families that they have treated. One mother and four daughters all had breast cancer yet tested negative for BRCA. They treat them as they are genetic because they believe they are -- the gene they have just hasn't been discovered yet.
And they said the same with my family - a mother and two daughters - they believe there is a highly genetic component no matter what the tests say. I certainly believe it!!
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my mother and aunt both had breast cancer and now my mother is fighting colon cancer too. So cancer runs Hugh in our family also. As of late I have had Alot of breast pain and some turning inward of my nipple on my left breast as well as some times itching like crazy. I am seeing my doctor the 25th to talk with him about getting all of this seen about. I also have dense breast so that is a concern of mine as well. Wishing all of you ladies the best. Deannie
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I have 1 first degree relative with BC (sister) and 3 second degree relatives with BC (grandma& ,aunt). Grandma had separate cervical, uterine, breast(at 59)and 2 bouts of colon cancers (she fought the good fight and passed at age 76, I kid you not!) The aunt had BC at age 37, and she had lung cancer at age 81, so obviously, she lived a long time, too.
But after that it gets rather murky--I have 6 other 1st & 2nd degree relatives, and at least 7 third degree relatives who have had various other cancers: thyroid, pancreatic, lymphoma, several with lung or colon cancers. All 6 of my grandmother's siblings had breast, lung, or colon cancer, or some combination of those. In all, there are 17 people in my family who have had cancer of some form or another.
When I tested positive for IDC in July 2015 my BS immediately ordered genetic testing. The initial set of tests were for 5 breast genes, including BRCA 1&2. I elected to also have another assay that tests for other types of cancer, including colon cancer and pancreatic cancer. The initial 5 were negative and my sisters & I rejoiced. Yesterday, I found out that the other assay came back positive for 2 genes, both for breast cancer. Foo! The genetics counselor and the BS are sufficiently concerned, that they want me to go in for a face-to-face meeting. That makes me uneasy. Appt with genetics next Fri, followed directly by an appt with the BS to get final path results of the lumpectomy I had today. Double foo!
Not sure what this means for future treatment, but I am preparing myself for all eventualities.
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I was sorry and sad to hear about your family hx. Sounds a lot like mine 😒.
I am still waiting on results from genetic testing. Not BRCA 1 or 2 though.
Which mutations did they find positive in your case? Wondering both for you and me.
Lots of good wisges
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my mom and both my sisters were dx'd with bc. My sisters were both premenopausal. For five years they've done bx. This year for the first time it is an excision bx. My hr considers bx to not be a chronic health thing and will dog me for alike it is just taking a mental health day or whatever. Have arranged so far to get around it with vs time. Been though you're supposed to give 2 weeks. I'vand I am directed to do x or y in 2 hours
I'm on iPad. Sorry for atrocious auto grammar and spellcheck but I think y'all get what I'm sayin
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after 5 regular sick incidents you get put on progressive notice. At 10 you get fired. I'f you are "chronic" they won't incident you. But as I said thhey don't do that.
With this family history and dobro tic and age there are just more test rounds. If I do get bc I hope it's with insurance
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Hello,
My mother was Dx with brca at 48, died 10 months later (stage 4). My maternal grandmother was Dx at 48, died from brca at 51. I am 38 and all genetics testing recently done came back negative. I'm considering going forward with elective double mastectomy anyway because of anxiety and fear that because my mother's and grandmother's Dx were both premenopausal and aggressive, that I'm next. Has anyone out there gone forward with the surgery even with negative Brca genetic testing?
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NRSBBS, I went with the decision to have a pbmx this morning. All my female first degree relatives had bc, including two with premenopausal bc. Both my sisters were BRCA negative.
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