is there family history?

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vivo
vivo Member Posts: 532

My mom -56- was diagnosed with bc last november (in fact it is an occult primary cancer from breast)-her2+,estrogen+. Her brother had prostatic cancer 2 years ago and an uncle of my mom (her father's brother) has died at about 30yo from oral cancer.The docs say that these cancers have no connection with my moms bc. However I keep listening about the family histories and I cannot understand if this exists only in the same kinds of cancers. But since this is a matter of genes according to all the new researches couldn't the potential of a gene be expressed with different types of cancer? I am 29 and I am planning to have children soon. Should I make any tests or what?

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited March 2009

    Under the circumstances you have described it is possible that there is a connection.. I have a dx of DCIS and my daughter (who is in her late 20s) will not be genetically tested because I was tested for BRCA 1/2 and it was negative.. It would be great if your Mom would have the genetic testing (simple albeit expensive blood test) for BRCA 1/2 and I believe they also test for one more gene now.. If she is negative and you don't have any history of cancer on your dad's side chances are you are OK and it's easier for your Mom to be tested and actually it is recommended that the primary family member with bc be tested anyway.. So ask you Mom if you can.. I did the BRCA 1/2 because my daughter's primary care doc heard about our family history and asked her to ask me and frankly I would do anything for my kids so I did.  Surprisingly and although all of my tests had been negative (mammo's) up until the genetic counselor suggested the breast MRI and it came back with a positive area of concern.. My daughter saved my life by suggesting that I be tested.. This is a bit off target for you but I hope you see my point..  Good luck and I hope, if you do ask your mom to do genetic testing, she comes back negative..  Although that doesn't remove you from bc concerns it does reduce them and maybe put you at east long enough to get your family in place.. BEST!

  • Daudine
    Daudine Member Posts: 221
    edited March 2009

    Yes family history is important. My mother (64) died of breast cancer last year, her brother (51) died of colon cancer, her sister (42) of breast cancer and another (38) of lung cancer. Myself I'm BRCA1 positive and had a bilateral mastectomy and ovariectomy at 37 for prevention purposes. Cancer is 10% genetic, 50% family related and 40% environmental. No matter the kind of cancer, your genetic and family background are big components in your risks factors.

    I think you should be tested if you are worried.

    Good luck!

  • vivo
    vivo Member Posts: 532
    edited March 2009

    Thank you all.You helped me so much seeing more clearly things. It's a difficult period now and noone in my family wants to think about another member with bc, so they cannot help me at this time. However I firmly believe that we have to act right now so as to minimize the possibilities. The knowledge is power after all.

  • ElaineD
    ElaineD Member Posts: 2,265
    edited March 2009

    I tend to agree with the docs-these cancer types are not likely to be linked in a genetic way. Plus, your Mum at age 56 was quite old (yes, really!), for a genetic breast cancer, which tends to affect younger women.But, for your own peace of mind, it might be as well seeing if you could have the test.Good luck!

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2009

    Breast cancer and prostate cancer both of can be signs of the BRCA genetic mutation.   The oral cancer is unlikely to be connected.  Here is some information about the BRCA mutation:

    http://cancer.stanford.edu/information/geneticsAndCancer/types/herbocs/

    Most breast cancer - about 85% - is not genetic, although in all likelihood there are genes that are yet to be discovered so it could that the % that's genetic may be higher than currently believed. Although there is some cancer in your family, there really isn't a lot, especially when you consider that 1 out of every 2 men and 1 out of every 3 women will likely get cancer during their lifetime.  So 3 cases isn't much.  Still, having both breast cancer and prostate cancer in one generation might raise a question so you may want to talk to a genetic counsellor.  He or she can give you an idea of your risk level and indicate whether you are high enough risk to warrant taking a BRCA test (or ideally, having your mother take it, as Deirdre suggested).  Then you still have the option to choose to take the test or not.  But seeing a counsellor is the best way to get the information that you are looking for.

  • tos
    tos Member Posts: 376
    edited March 2009

    Elaine D,

    I was shocked to read your post saying her mom was "quite old" for a genetic breast cancer!

    Let me tell you I did the genetic counseling at the age of 60 and found a brca1+mutation.  There are women over 40 who do test positive, it is not all under 40.

    I was first diagnosed with Triple Neg Cancer at 56 but then they were barely whispering about genetic counseling and I did have a heavy family history.  So when it came back 4 yrs later and my daughter had by then been diagnosed I knew something was wrong.  Her mother is NOT too old.

    I would suggest vivo and you go to http://www.facingourrisk.org and also talk with a genetic counselor.  She, vivo does have familial cancer and you need to find out if you should test for your sake and that of your children and relatives.

    Beesie is correct about the prostrate cancer.

  • ElaineD
    ElaineD Member Posts: 2,265
    edited March 2009

    I didn't say she was too old-merely that most genetic cancers tend to present at a younger age.Granted the prostate cancer could be linked, but not the oral.I think the genetic link would be more likely if a grandparent had had a cancer, but as this wasn't mentioned, I'm assuming (perhaps wrongly?), that nobody from that generation was affected.

    As for me-I was diagnosed 5 years ago with BRCA2, and following on from that,all family members have been/are being tested. My daughter too has the gene misprint-as have several cousins.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    the genetic counselor, who I spoke to briefly in passing (insurance won't approve payment), said my mom who had ILC at age 57  was "on the cusp"--not the under 45 they usually are looking for, but not that old either.

    Anne

  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited March 2009

    BRCA-1 is a mutation of a tumor suppressor gene and therefore can manifest in many varieties of cancers, especially in men who are carriers.

    Long story... 

    My sister was the only relative who had had breast cancer, until me. I was diagnosed at 49. All my maternal aunts and uncles (and mother) were alive and cancer free. My maternal grandparents had died of heart attacks at an advanced age. A cursory evaluation would not reflect any family history.

    With only one first degree relative with breast cancer and no aunts or grandparents showing up, I almost didn't get approval for testing. But I persisted - I was triple negative and my sister's cancer had been hormone negative and also premenopausal to boot. Fortunately we have family records that revealed I was the first woman in my paternal line to live past the age of 35 in hundreds of years. My grandfather's mother (and three of her sisters) died before 34 but only had sons. One of whom was my grandfather, who also only had sons. One of whom was my dad - who had three daughters and a son.

    My paternal grandfather lived to be 90 - but passed the gene down through his son - who died at 46 from melanoma. It was considered a 100% service-related disability/death as he was an officer who was at sea a lot of his career. Who woulda thought it was a BRCA gene at work?

    Only because I was able to convince my genetic counselor to take into consideration distant paternal relatiions was I able to get the testing that, as I expected, came back positive. I would encourage your mother to be tested. Barring that - you need to at least have a consultation with a genetic counselor. "The doctors" cannot perform the thorough evaluation that a genetics specialist can - their specialties are surgery or oncology. Your results can have a bearing on your treatment.

    Hoping you test negative, but hoping you do test,

    Lisa

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2009

    My understanding is that depending on whether one is BRCA1+ or BRCA2+, and depending on which particular variant of the gene mutation that one has, it's possible to be BRCA positive and still have anywhere from a 20% (worst case BRCA1) to 75% (best case BRCA2) chance of never getting breast cancer. 

    We are all born with two of each of the BRCA genes (2 BRCA1 genes on chromosome 17 and 2 BRCA2 genes on chromosome 13).  If you've inherited a BRCA mutation, you start off with one of these genes being defective - perhaps it's not working from the start or perhaps it's altered in some way making it likely to fail at some point - but as long as the second copy of the gene continues to work, you won't get breast cancer.  Both copies of the gene need to be altered or fail in order to get cancer.  Genes do alter or fail naturally as we age, so someone who has only one good gene from the start has a greater chance of getting breast cancer at an earlier age.  This is why the diagnosis of breast cancer at a young age is a sign that one might be BRCA positive, however women with the BRCA mutation can get breast cancer at any age - it all depends on when, or if, their 2nd copy of the gene fails.  Because of this, it's possible to be BRCA+, pass the gene mutation on to your children and yet never get breast cancer yourself.  This is why the medical history of relatives such as aunts and uncles and grandparents is so important.  It's a pattern within the family as a whole, over several generations, that the genetic counsellor is looking for.  While the BRCA mutation does not skip a generation (if your parent has the mutation but you don't inherit it, you can't pass it on to your children), if the BRCA mutation is in the family and has been passed along, not everyone in a straight line across the generations (great grandparent, grandparent, parent, etc.) will necessarily be diagnosed with breast cancer.

  • vivo
    vivo Member Posts: 532
    edited March 2009

    I 'd like to add the fact that my husband's mom has died from breast cancer at the age of 52 (when there was no BRCAtest known) and therefore I'm very suspicious about the genes that we will pass to our children. Is there a BRCA test for men since they can pass such genes to their children?Have you heard about the couple in England that had artificial insemination to void the guilty genes to their child? What is your opinionabout that?

  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited March 2009

    BRCA is the same for men and women vivo, just a simple blood test (albeit expensive - but I was able to get my insurance company to cover the cost for me after rejecting it.)  I'm sure there are different rules for different parts of the world (this is in the US).  I don't have an opinion one way or another about the artificial insemination as we all do things for different reasons - I will say that we will see more and more of this happening as the medical community becomes aware of how our DNA works and which gene reflects which disease.

  • ElaineD
    ElaineD Member Posts: 2,265
    edited March 2009

    Vivo, isolated cases from another branch of  a family can't really be added into the equation. Most families have experience of cancer+/or deaths from cancer, as it's such a prevalent disease. The fact that your m.i.l died form BC again  doesn't automatically imply that there is a genetic misprint in the family, as  the vast majority of BC cases are not genetic. The main criteria for suspecting genetic BC are if-

    4 relatives from same side(ie, from exclusively either  your Mum or Dad's branch) with BC/ovarian at any age,

    3 relatives  from same side, aged under 60

    2 relatives from same side under 40

    Even factoring in the possible connection from the prostate cancer, you still only have your Mum, and possibly uncle , as a potentially suspicious genetic BC.

    I feel that you want to pursue this, and in order to give you peace of mind, then it may be worth putting this into motion asap. But please try not to worry excessively. Of course there is a chance that there's a link-can I ask if either of your Mum's parents had BC, as this would clarify the issue slightly. If neither of them did have a BC diagnosis then it's unlikely that a genetic misprint would have been passed onwards from them to your Mum's generation. For this to be the case, then the inference is that they died form other causes, without being aware that they had BC. Not imposssible, but rather unlikley.

    Just trying to view this dilemna from all angles-am not saying that you shouldn't be concerned and make further enquiries-but as Beesie said, the incidence of cancer in your family is not excessively high. In the meantime, if you can collate as much information as possible, putting into a family tree, then this will help in the original assessment, should you decide to go ahead. Good luck-and hoping that any tests return negative. Best wishes too, to your Mum at this tough time for her..just one final thought (sorry!). If your Mum is undergoing treatment at present, this type of testing might be quite upsetting for her at the moment, so waiting for a few months might be an idea?

  • vivo
    vivo Member Posts: 532
    edited March 2009

    ElaineD it is true that I don't have the classical BCpotential family tree because my grandmother is about 85 still alive and my grandfather has died at about 80 yo (heartattack but he was suffering from marrow malformation caused due to his age as doc said). However it is true that the today's knowledge about genes shows that there can be a misfunction that can pass to descendants without the parents to have the disease. And I would do anything that could prevent this to be passed to my children. I am overconcerning (I wish very very falsly) because I am thinking very much the option to get pregnant as soon as possible. 

    Since my mom is on chemo the first thing I think is HER and of course I wouldn't let anything disturb her tranquility! I have discussed with my mom about the family tree but I won't ask her to do any needle test unless docs ask her to do so. I am planning to go and do that test without getting her involved. I can't imagine her anxious about my test! She has a lot of things to be anxious about and definitely I shouldn't be one more.

  • ElaineD
    ElaineD Member Posts: 2,265
    edited March 2009

    Good for you Vivo! But you know with all the progress there is being made in the genetic field, I think you could take comfort form the fact that if you did have children, by the time that they were old enough for any gene misprint to possibly affect them, there's every hope that the experts will have found some way of eradicating it. It all sounds a bit like science fiction at the moment, but it's a field which is bringing huge progress on a regular basis.

    You commented about the baby born here, and I'm not meaning that level of manipulation/screening (this made me rather uncomfortable if truth be told) . But the hope is that in the future if a gene is passed on, then it can be eliminated. If you want a family soon-then go ahead and do so . There may be little that this generation can do to avoid it at the moment, but subsequent generations will have access to therapies today which will be far reaching. Without wishing to worry you further-don't forget that a potential BRCA mutation is only one of the huge range of genes that we pass on to our children, and realistically we don't spend time worrying about every other potential genetic problem/issue we may pass on. So, you're absolutely right to pursue it further, but please don't let it dominate your thoughts excessively, and enjoy instead your plans for the future!

  • kimbly
    kimbly Member Posts: 398
    edited March 2009

    I was diagnosed with bc not to long after my 46th birthday.  There are no cancers on my mom's side of the family at all.  My dad is not my biological father he adopted me when he married my mother at age 3.  I have no idea of my paternal side of the family's health and if there are cancers there, since I have a daughter I opted to have the test done.  I  came back negative, I originally refused the test but then for the sake of my daughter and sisters I decided to test.  My insurance has still not paid but will pay or the test would not have been done... having that unknown and being on the age cusp was what prompted me to have the test...

  • Daudine
    Daudine Member Posts: 221
    edited March 2009

    Being BRCA1 or 2 means that the gene that stops cells multiplication doesn't do its job properly. So ounce the body tries to defend itself, it won't stop.....so cancer can hit anywhere.

    Dont want to scare anybody but these are the facts! 

  • patsfan
    patsfan Member Posts: 72
    edited March 2009

    Hi to everyone.

    I'm fairly new at this and still gathering info.  Just when I think I have a handle something new gets thrown at me.  I had an incisional biopsy and sentinal node retrieval friday, mar 20.  Originally was scheduled for lumpectomy but my lump was too big.  The plan is to do neo-adj chemo and then lumpectomy and then radiation.  I am only 41 and my doctor and i would both like to save my breast if possible.  My sister came from out of town to be with me for the surgery and after 2 days of comforting me informed me that with my diagnosis she decided that she better have her slightly overdue mammo done.  She has DCIS.  She has had the gene testing but is waiting for results.  I am now worried that if I opt for lumpectomy and there is a gene there, am I opening up myself to the probability of cancer again?  I am scheduled to start chemo the week of the 30th-my birthday!  Nice present huh?  I don't want to delay anything any further.  Just want this to get on and get overwith!  How long does gene testing usually take? 

    Gayle

  • leaf
    leaf Member Posts: 8,188
    edited March 2009

    I've never had it, but I understand that in the US it ordinarily takes about a month?  I think you can send more money for a faster job (like 2 weeks?)

    I think I read one poster from ? Australia where it took over a year.

    I hope someone who has had it done will correct me if I'm wrong.

    I hope you can still enjoy your birthday.

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