Am I High Risk and feeling scared

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angelmom11
angelmom11 Member Posts: 10

Hi,

I am a little confused about my risk factor and wondering if I should get the BRCA test.  My Mom had Breast Cancer 2 years ago at the age of 76 and had radiation only.  She is fine now.  My sister had B/C last year at the age of 50 and had a mastectomy because it had spread within the same breast.  She is on Arimidex and has a positive prognosis.  I have very dense breast and have had 2 biopsies on a recurring cyst in the right breast that for some reason looks suspicious for cancer everytime I have a mammo and ultrasound. My GYN told me I need the BRCA test, but my Sister who has B/C called a Genetic Counselor and was told that since my Mom was diagnosed late in age and since we are Irish, the chances of me at 48 or my other sister 47 getting B/C is very low.

Right now, I have pain in my underarm near my left breast and my lymphnodes feel a little enlarged, I feel a tiny lump in my breast that is a little painful.  I am extremely scared to go to the Doctor and I am having panic attacks that are keeping me from going. I haven't told anyone yet, I guess I am still reeling from watching what my Sister went through with her mastectomy last year.

 I know I need to get to the GYN and I will, but should I get the BRCA test?

Thanks for your help.

Comments

  • CarynRose
    CarynRose Member Posts: 149
    edited March 2009

    Angelmom,

     Recently, an article was published by Dr. Narod (expert on hereditary breast/Ovarian cancer) that stated that family history can be as important as actual defined hereditary genetic mutation in predicting high risk.

    If you are having symptoms, you MUST go to the doctor and have it checked out.  That should happen first.  Then worry about the BRCA test.  Given the ages of your mom and sis, IMHO, there could be a BRCA2 mutation as those usually come on later in life.

     Get thee to a doctor and check this out.

    Best wishes,

    Caryn

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

    Hi Anglemom11:  Being Irish also, and after my genetic counselor suggested that she sees many many Irish decendant <sp> women (and men) with strong family history of bc I took the BRCA (my Dad who is /was from Ireland had bc).  Now it is likely this will come back negative, but it still should be done because of how much they know and how much they would suggest you do if you came back BRCA +.  That being said, medical science has only identified very few genes and so even if you test negative, your family history is strong.  If you go to a genetic counselor she/he will tally up all the risk in the family and show you a "map" of your risk.  That map was incredibly informative for me.  Since many of my family were in Ireland and in the last generation of Irish people they tended to not go to doc's unless absolutely necessary and so many of my own relatives might have died from different cancer those cancer's might have originated as bc and then gone on to be mets so they were never identified as bc.. so it's a good thing to check this out..

    Now, your genetic counselor will also recommend a breast MRI and that is also imperative!  I had had my mammo's since the age of 35 (every other year) and nothing was found.  Then after speaking with the genetic counselor my primary care doc prescribed an MRI which found an "area of concern".  My bs didn't believe it so he did a sonagram, and another mamo and a digital mamo but it (DCIS earlierst stage of bc) showed ONLY on the breast MRI.

    If you go to your GYN (and of course you should) even if you decide not to do the BRCA test ask if he/she can have a breast MRI set up for you and essentially you have done what would have been recommended by the genetic counselor even if you are BRCA negative..  Don't know if this confusses you more, but if so ask me a direct question and I'll try to answer it.. Best!

  • angelmom11
    angelmom11 Member Posts: 10
    edited March 2009

    Thank you both for your response.  I guess the reason I was asking was when I do go back to the GYN I know he is going to ask me about getting the test again and I wanted to know if it would have been a waste since the Genetic Counselor who my Sister spoke to on the phone told her not to bother.  The other question I have is why my GYN didn't mention a Genetic counselor, he wanted me to do the blood test in his office and then have it sent out for analysis.  He said insurance may or may not pick up the cost. We have a lot of cancer in my Family history, and after reading both of your post I think it would be beneficial for me to sit down with a Genetic C at some point.  I hope I just have a cyst in this breast as I did in the other, but the lymphnodes are what is scaring me.

     Thanks again,

    Angelmom

  • CarynRose
    CarynRose Member Posts: 149
    edited March 2009

    Angelmom,

    The whole field of hereditary cancer is relatively new and your run of the mill oncologist won't really be familiar with it.  You can actually teach your oncologist that certified genetic counselors can help you navigate not only the maze of hereditary cancer, but also the insurance morass we face with having our tests covered. 

     You can find out more about hereditary BC and OvCa at www.facingourrisk.org.  The organization is called FORCE (Facing Our Risk of Cancer Empowered) and you won't find another place with more informed and compassionate support.

     All the best,

    Caryn

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

    Well, you said your were Irish, but are you living in Ireland?  Different countries handle this area by different specialties..  Your GYN may be able to draw blood and do a BRCA but unless he/she has a degree in genetics they can't give you that map that was so important to our family (it was done for me but applied to so many of my brother's and sister's and their kids!).. so yes I would suggest you get referred to a genetic counselor - but again I don't know which country we are talking about with your experience.  Here in the US I was able to call the genetic counselor my self because our insurance is set up so that I can schedule an appointment with any medical personal and they will pay (after my deductable) 80% of what THEY consider is appropriate for the services rendered..  So I expect you will pay some for the BRCA, but I found that I understood the BRCA and what it revealed to me about my family history to be the most beneficial of all.  My BRCA was negative, but the map clearly showed that I was at very high risk.  Also you should take into consideration your age - until recently in the US women (or men) would avoid a genetic counselor because they were afraid that anything that showed up MIGHT interfer with them getting good insurance again.. but now there are laws that protect us - that being said I'm not betting that the information will somehow "leak" to others - so I am suggesting that you (if you are in your late 40 or 50s) take the test and that helps you children understand their positions without them having to go through the process themselves.  So many of us who are in our late 40s or 50s have our lives "in order" and so can't be harmed EVEN if the information is leaked to other insurance companies.. And again it is now against the law for that information to be shared so if you do get it keep all information close to the vest.. And also remember that although a genetic map may show your family some areas of concern for them it is completely designed for you - so if you have the map done your sisters will be similiar but not completely the same..

    I hope it is a cyst too angelmom11 and I would visit www.facingourrisk.org as Caryn suggested too!  Good luck and let us know what you decide!  Best

  • yulanda742003
    yulanda742003 Member Posts: 20
    edited March 2009

    I have a family history of bc my grandmother @62 my mother @42 my aunt @59. i just had a 2lumps removed 2wks ago.i had a lump in the right which i knew about found out about left breast day of surgery another lump was discovered deep under the nipple it was removed as well. Dr suggested i have the same test you're talking about. i'm going to have it done i need to know.i don't have a problem with getting rid of breast and ovaries.

  • angelmom11
    angelmom11 Member Posts: 10
    edited March 2009

    All,

    Thanks for the replies.  I will talk to my GYN about seeing a genetic counselor, it sounds like I will get a lot of great info.  I am also going to ask for a MRI since my breast are so dense and I don't want confusion like before with 2 biopsies of a recurring cyst that one radiologist told me "this is not a cyst" and it turned out to be.  You all have been so helpful with your suggestions.

    I really appreciate having the knowledge so I can talk to my GYN about all of this.

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

    Yulanda742003:  Please be very careful and try to see a therapist before you make any decisions about removing any piece of your body that may be healthy!  I really get concerned about anyone who makes blanket statements about "getting rid of breast and ovaries".. I'ts such a psychological change that none of us are really prepared for (at least a great deal of us).  I remember a conversation I had with my sister before I was dx'ed with DCIS and I made a similiar comment about if I came back positive for BRCA (I would have my breast tissue removed if I were BRCA +).. but DCIS was the dx and I was faced with a lumpectomy (with radiation - which I didn't want) or a mx..  If I was BRCA + I would most probably have mx and remove the ovaries, but now, kowing what I know, I don't think I would have the mx.  I would removed the cancer and then go into "watchful waiting" mode - being seen every 6-12 months with an MRI (and perhaps sonogram).. There were so many confussion by the doc's and myself and I could not have anticipated feeling so "lost" after the surgery.. I assumed I would go through a grief sort of process and then get back to my self, a new self but I had gone through surgeries before and yet this was so very different.. I don't know if I will ever be comfortable with the self that I am now (2 years later!)...  Although I covered many basis, studied up on BRCA and MRI's and mx and reconstruction, stats on recurrence, but I didn't do one piece that I think every women SHOULD do and I actually think it should be part of the treatment.. I wish I had gone to a counselor/therapist to talk to directly and without the input of other's in my life (who love me but still their information was tainted by that love) and really get all of my feelings out BEFORE any surgery.  I believe that could have made the difference with my acceptance and moving on and I don't want anyone to feel the way I do.. I know that you will do what you think is best and it will be your decision to make, I just want you to consider adding one more consult to the plan, a very important consult that I believe get left off the list..  Good luck and I hope everything turns out fine for you!!  Best

  • heatherbless
    heatherbless Member Posts: 295
    edited March 2009

    Hi all:  your responses are well taken.  I think everyone just needs to seek out the appropriate medical advise and determine then, what is best for them.  I personally am BRCA2 + and was diagnosed with BC at age 41.  I have had all of the chemo and according to the last MRI scan--all of the cancer is gone:  but, I am still going to have the surgery with a double mastectomy because of the risk issues.  I have an identical twin sister who is also BRCA2+ and she went to see a genetics counselor and an oncologist and they just recommended that she have her ovaries removed--to lower her risk.  So, with these facts everyone is different.  I personally would recommend anyone have the gene test if BC runs in your family.  To me it is better to know now than not know.

    I am a true example along with many others on this website--that you can survive breast cancer and have an excellent prognosis.  My thoughts and best, heather

  • Mouser
    Mouser Member Posts: 245
    edited March 2009

    Hi angelmom --

     i doubt you are at high risk of BRCA mutation. That's armchair biology -- guessing !! -- but here's the reasoning:  Families with BRCA mutations tend to show early (premenopausal) bc, as well as ovarian cancer and prostate cancer and even breast cancer in men ... Neither your mother nor your sister fall into the early onset category, so unless the other cancers in your family are prostate, ovarian, etc, you don't really fit the profile. (You're also not Ashkenazi Jewish, right?)

    Of course, with a mother and sister with bc, you are still at increased risk -- with or without BRCA mutation. But that's a far cry from the very high bc probability associated with BRCA.

    If you can get to one, a genetic counselor can give you pretty good odds on whether you have a BRCA mutation, based on family history.  (The more info you have, the better!) In my case, with a sister and an aunt with bc, as well as a bunch of more distant relatives (great-aunts and their daughters), the counselor said i still had only a 1-2% chance of BRCA, and advised against testing (insurance doesn't pay when odds are that low). Also, she said that the best person to get tested is the family member who has BRCA --in your case, your mother or sister. After i was diagnosed my sister got tested: she still has her ovaries, and was worried about the ovarian cancer risk. She's negative, and i don't see any need to get tested -- everyone in my family was at least 50 when diagnosed, and my sister - who was the youngest of us at diagnosis - is genetically OK.

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