adopted - with no medical history - advice

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katiec
katiec Member Posts: 28
edited June 2014 in High Risk for Breast Cancer

Hi ladies,

I'm after some advice. I'm adopted and have no knowledge of my medical history. I've a lump in one breast which has had a couple of biopsy's now and doc thinks cancer but still some more tests to go. He expects it to require a mastectomy because of multiple locations although checking out what is in each of them still.

If I get cancer in one breast - am I more likely to get it in the other?

Should I ask him to get my genes tested to see if I'm in the high risk group?

Should I consider a mastectomy on both sides - for prevention?

I'll ask my doc next week but would value your suggestions/ ideas/ questions I should ask him.

thanks all.

Katiec

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

    Hey Katiec,

    I like you am adopted and have no family history.  Basically I don't think not knowing what is in your past is that big of a deal.  If you do have BC what type you have is a better indication of  whether or not you will get it in your other breast.  I had Lobular cancer and it does have a higher degree of being in both breasts.  I didn't have any signs of cancer on the other side, but with a lot of cysts, and no family history I did opt to have bilateral mastectomy with immediate reconstruction.  I have not had genetic testing for the BRACA1 and BRACA2 genes, but haven't ruled it out at this time.  If it would give you peace of mind to have that testing you should talk to your Dr.  For me, I knew that I needed to deal with the cancer I already had and I can figure the rest out as I move forward.  I had my surgery on 7/14 so I am still figuring things out.

    Can you talk to your adoptive family about whether or not they know anything about your biological family?  I haven't got much family left so that wouldn't have helped me.  You mentioned that you have had a number of test, which ones, and what have they said?  If you would like you can PM me and we can chat further.

    Susan

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  • katiec
    katiec Member Posts: 28
    edited August 2009

    Hi

    My family have no medical history for me -so that's not possible unfortunately.

    In terms of test - needle aspiration showing highly abnormal cells and mammo shows more than one place. plus the lump feels reasonably sized.

    core biopsy showing normal cells but he has said that this happens occasionally if the cancer is heterogenous and in lots of small lumps. Going back in forMRI tomorrow to confirm whether my breasts are heterogenous or homogenous with more biopsys as soon as they can tell where to aim.

    My boobs are largish so I feel quite concerned about losing one but losing 2 feels more symmetrical especially if it rules out more worry for the future. I can't believe you can reconstruct a big boob well.

    We're going to talk more about options when the next results are in but I'm open to othersthoughts and ideas - especially about things to consider. Thanks for the info on lobular cancer..

    Katiec 

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  • mawhinney
    mawhinney Member Posts: 1,377
    edited August 2009

    I recently heard that  only 20% of breast cancers are inherited. The origin of the other 80% is basically unknown.  I have no family history of breast cancer , never smoked, and ate all my vegetables yet I have breast cancer.

    Start a list of questions for your next appointment. As you think of a question jot it down. I keep tablets around my house and when I think of something I jot it down. I keep separate lists for each of the doctors I see.

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

    Hi Katiec,

    I really do understand the no family history thing, it is frustrating.  I have always knowen that I would never know, but yet I always wonder.  I think the most important thing is to deal with what is happening in your body right now.  Maybe the abnormal cells are not cancer though.  There are so many things that can just go wrong with no explenation, and still be B9. 

     I don't regret at all having both sides done.  To me it was more symetrical, and I had a lot of cysts on the "good" side, and in the end it had some fairly ugly areas of LCIS any way, so it wasn't all that "good" after all. 


    The reconstruction thing is a mixed bag.  On one hand for me it reduced the emotional shock of the physical change.  On the other hand it had a whole set of healing issues, and it made scheduling surgery take longer.  I am happy that I did it though.  I have large breasts too, 40D.  My plastic surgeon did a great job.  The left side is very close to the original, the right side isn't quite as good, but it isn't bad, and he assures me that in a few months he can do revisions to make them match better.  I had TRAM flap reconstruction, which means they took the tissue from my abdomen, (basically a tummy tuck) and used that to make my new breasts.  In the mastectomy they leave most of the skin.  My body actually looks better now than it did before.  Obviously, I had the fat in my abdomen to spare.  If you aren't built that way there are still lots of options.  If it comes down to making these choices in your case this web site, your providers, and other resources out there will really help you.  I found "Living Through Breast Cancer" by Carolyn M. Kaelin to be very helpful.  She is the Director of the Breast Health Center at Brigham and Women's and a BC survivor.

    Any way, best of luck, I will keep a good thought for you tomorrow for your MRI.

    Susan

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  • theredheadamy
    theredheadamy Member Posts: 43
    edited August 2009

    Hi Katie,

    I'm a child of closed adoption as well, and never really thought much about family history.  When I found the lump, the surgeon suggested I get the BRAC test, though she thought it would be negative.  It was, however, positive for BRAC1.  That, plus my tumor being  triple negative, led me to bilateral mastectomy and total hysterectomy.  The risk of ovarian cancer was what scared me more than the breast cancer, honestly.  

    I'm thankful my surgeon suggested the test, and I am happy that I was able to do what I did to prevent further cancers (yes, there still is a chance, but it is very small).  I do not want to do this again, though I had a relatively "easy" time of it.  

    Knowledge is power.

    Best of luck to you; do what YOU are comfortable doing.

    Amy 

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  • mlkesem
    mlkesem Member Posts: 5
    edited August 2009

    Well I had multiple lumps and opted for a single mastectomy. I also had the genetic testing and found that I was not braca 1 or 2 positive. However there is family history on both sides of breast cancer even though my mother did not have it. Her sisters did. I am 62 years old and feel that the ability to identify problems is quite advanced and consequently will not even consider another mastectomy. That being said, you should also have the oncotype which will give you better information for risks of recurrence. Alot also depends on what type cancer you have which will only be known after the tumors are removed. That it is all very clinical - the question is how old are you, how scared and will not taking both breasts off cause you too much anxiety and interfere with quality of life. Only you can make that decision. Ability to have peace of mind is equally important in this decision. What does your family feel , your doctors think and most of all you.

    I wish you tremendous luck in the difficult weeks ahead. My situation is still very recent - just finished chemo only in February - surround yourself with only supportive people -it makes a difference.

    Good luck and strength from those who have "been there done that".

    Mlkesem

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  • dreaming
    dreaming Member Posts: 473
    edited August 2009

    Studies show that 84% of B.C. patients are not high risk, ask your doctors for advise since you do not have family history, also remember than in the past many families never used to  mention the cause of death or illness in the family;  many cancer patients were not told if they had the disease by there doctors, some countries still are very secretive about illnesses.

    Personally I am the first in my family, and not in a high or low risk category. I do not feel guilty about ruining the gene pool , I believe that I got sick because of the area where I lived, there is too much breast cancer in this city.

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  • katiec
    katiec Member Posts: 28
    edited August 2009

    Thanks - you are helping and giving me something to think about before I see my doc.

    thanks

    Katiec

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  • Everlastpink
    Everlastpink Member Posts: 139
    edited August 2009

    I don't know how old you are, but something else you might want to consider is if you plan to have children.  If the test is positive (long shot, but it happens) and a hyster or oopher is recommended and you want children, you might consider infertility planning in advance of the gyn surgery.

    Also, if you have girls, you might want to know your BRACA status.  But you can have the test anytime, of course.  I agree the first thing to think about is what kind of cancer are you dealing with now and face that first.  Will you always wonder about your genetic status?  If so, maybe you should have the test. 

    I had my treatment first and only recently had the BRACA test, still waiting for results.  My mom and sister don't have BC, but aunts and others do.  Also lots of other kinds of cancer in my male relatives (father, uncles) so onco decided I should consider the test. I had it mostly for my sister (who is younger and has 3 daughters) and for my 4 female cousins, so they will have more information to make their own choices.

    It's such a personal decision. My advice would be to first focus on what is going on now, then explore with your docs the pros and cons of BRACA, which you are doing.  Your insurance coverage is a factor too, though I believe most cover, at least with a copay.

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