Updating my list of questions for my surgeon ~ Please help!

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Lyssa5778
Lyssa5778 Member Posts: 10
edited June 2014 in High Risk for Breast Cancer

Hello,

I am seeing my boob guy on Monday and am trying to update my list of questions for him.  I would like to reevaluate my risk as I have had a lot of testing since my iniital risk analysis.

Here's a little bit of background info on me, and if anyone has any questions they think I should ask him please let me know.  I don't want to leave anything out.

I'm 33 years old, 3 generations of women on my mother's side have been dx with bc.  My mother passed away in 1997 at the age of 46.  The other 3 women in my family have all survived the disease but my aunt is the only one still alive.  I underwent genetic testing 2 years ago and was negative.  2 years ago I also had my first mammogram; calicifications were found in the right, spot in the left turned out to be a cyst and both breasts are very dense.  There are areas in both breasts that my boob guy cannot feel as they are too dense.  Calcifications were biopsied and benign.  Since then I have undergone several mammos, MRI's and U/S's.  I recently had my 5th biopsy which was for the first lump I could feel.  This came back as fibroadenoma, I also had another biopsy come back in the same breast (left) as a fibroadenoma.  

My inital risk assessment was done about 1 1/2 years ago, which put me at a 30-35% lifetime risk.  From my recollection, we have not discussed my breast density as it relates to my risk, as well as I do not know the exact pathology of the fibroadenomas (whether they are complex, etc.).  I plan on asking those questions as well as asking him to remove this most recent fibroadenoma.  I hate being able to feel it and it is right on my ribs.  Anytime I move my arms over my head or pick my kids up, it gets stuck in between my ribs and them pops over them.  It is causing me a great deal of anxiety and I just want it gone.

Are there any other questions related to my risk that anyone thinks I should bring up?  Is there anything that I am missing?  Any input is greatly appreciated.  This forum has been an amazing find for me so thank you :) 

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  • LISAMG
    LISAMG Member Posts: 639
    edited November 2011

    Lyssa, you are being very proactive and i applaud your self advocacy, especially given your significant family history. Currently, you are also BRCA un-informative negative since no other family members presumably have tested. Been there, done that myself.  Is there any chance of getting your surviving aunt to test for a possible family mutation? If so, you would have a much clearer understanding of your risk. Unless an affected member undergoes genetic testing, you are assumed to be high risk nevertheless with your history of multiple biopsies. Have you discussed risk reduction surgery, if this is what u want??  Undoubtedly, surgery is not for everyone and such a personal decision.

     I had a preventative NSM 15 months ago and I am un-informative BRCA negative as well. However, 2 affected family members, one with OVCA and the other with BC, were also BRCA negative. This was my "green light", so to speak, that allowed me to move forward, along with having dense breasts and multiple biopsies over the years. As a result, I've lost nothing but my risk and my new breasts look far better than my originals. It took almost 5 years of agonizing stress and relentless homework to reach my final destination with absolutely no regrets. No longer could i endure the stress of watchful waiting & worrying. I do feel your risk is higher than the 35% u stated. Take your time, gather more facts, follow the research and know all your options by seeking different opinions. Surveillance or surgery are both viable choices. Best wishes! Innocent

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  • mawhinney
    mawhinney Member Posts: 1,377
    edited November 2011

    Lyssa ~ Have you obtained copies of all your test, biopsy, & surgical reports?  I have found it helpful in understanding my situation by reading and reading the reports.  Oftentimes, I've had to use a medical dictionary to decipher the terminalogy. When I seek a 2nd or 3rd opinion, I have copies of all my reports to take with me.

    You might ask if all the tests and biopsies you have had affect  on interrupting screenigs or onyour risk assessment. For example,   each time you have a biopsy, the procedure alters or scars your breast tissue and that can make it a little harder to interupt test results.

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  • JaniceRH
    JaniceRH Member Posts: 44
    edited November 2011

    Lyssa, I have extensive history, on both sides; my cousin and I were both tested and both tested negative.  I went through what you are going through and at age 54 I was found to have extensive DCIS and invasive.  I'm meeting with my geneticist on the 22nd to see about BART testing...why, because I have an obligation to the next generation of my family.

    I was told this...BRCA is not the end all and be all of testing...there are tons of genes yet to be discovered.  I felt, that as long as I had benign findings, I would keep my breasts, and I did..until I didn't.

    I was diagnosed and had my right breast removed in July 2009; it was the right thing to do, considering what they found.  Now, I'm scheduled for a needle aspiration/biopsy of a new, large, complex cyst in my left breast.  I am postmenopausal, cancer on the right and prior history of HRT..if there is anything abnormal...even if it's atypical hyperplasia, my Husband and I have decided to go ahead with a mastectomy.  I had a free tram reconstruction on the right and will work with my incerdible surgeons, if this comes to pass.

    I agree with LisaMG and with mawhinney, you're doing all the right things.  I will tell you that I did not have the extent of symptoms that you are having, and no one, but you, can make this decision, but like Lisa, I would consider a PM.  Make sure you have a damned good reconstruction doc, who works very closely with your breast surgeon. 

    I've reread your post...you said " It's causing me a great deal of anxiety and I just want it gone".  so have it done!  Let me ask you this...you are seeing a breast surgeon, right?, not just a surgeon, surgeon?  Is this person a board certified breast surgeon?..also very important.  I think you may be looking for some definitive response from someone who can't give it to you!  I watched and waited, that was right for me.  Lisa MG watched, waited and took action, that was right for her.  No one can give you an answer to such a personal decision, but you.

    Prayers for you dear one, unfortunately, many of us have walked in your shoes and we know the anguish that you are going through.  BUT (I know, starting a sentence with a conjunction....)  BUT, you are in control, YOU are being very proactive, YOU are methodical, aware and questioning, and because of this, you will know you've made the right decision when you come to that line in the sand .

    Good luck, keep in touch,

    Janice

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  • Lyssa5778
    Lyssa5778 Member Posts: 10
    edited November 2011

    Thank you everyone, so much for your responses.  The true caring and concern you receive on this site is amazing.  Thank you.

    I have written down everything you all have said and am prepared to talk with my Dr. tomorrow.  He is the Director of the Comprehensive Breast Center in the city near me.  According to his profile, he is board certified in surgery but his first interest listed is breast surgery.  Does that make sense?  

    As far as a preventative mastectomy, I used to think that would be the path I would eventually take.  I had discussed with my husband that if I made it to age 45 without a dx that I would go ahead and do it.  However, the longer I travel on this path, the more confused I become.  I am so tired already of the all the testing, waiting and worrying and at times have considered taking a break from it all.  Then my two little babies pop into my head.  My daughter just turned 5 and my son is 3.  It's really hard to explain, but because of my daughter I do not want to do it.  I know it sounds completely backwards, that we should do everything we can to be with our children for as long as we can be.  Just knowing what I have gone through already, this all started because my mother had breast cancer, I do not want her to have to go through this.  I want to protect her the best I can from anything scary and worrisome, and if I can go my whole life without ever gettting a BC dx, then I will have done that.  I feel like her future will be completely different from what I am doing now.  But, if I go ahead and be pro-active, then all she will ever have in front of her is more questions.  Does that make sense?  I don't want anyone to think that I am saying it is not a good idea, I know in my logical brain that it is the best thing I could do for myself.  I guess I am just so confused.  And one of my strongest memories of talking to my mom about it was her worry about what her situation was doing for my future.  I'm so unsure :(

    Thank you again to everyone who has read my post and responded.  Here is hoping that I have a more clear answer to my questions tomorrow (I have my mammo first and then my boob guy) and that he will agree to remove this lump because I strongly dislike it.

    -Melissa 

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  • caro46
    caro46 Member Posts: 93
    edited November 2011

    Hi Melissa,

    I am 41 and was just diagnosed with IDC, I am at the stage where I have to decide on either preventative Mastectomy or lumpectomy, I have 3 daughters and so I totally understand your fears for your daughter. Especially having lost your mom to this! My 14yrs old daughter has been very aware of everything I have been through in the past few months and she is telling me over and over again:''Just get them off! I want my mom for a long time"  I think kids do much better than we expect them to, when I was diagnosed I spoke to the social worker about the impact it would have on my kids and she told me that if I was ok they would feel it and be ok!  So far it's proven to be accurate.  I know your daughter is still very young but I think that if you are so stressed with this she must feel it...

    Good luck in making your decision...

    Caro

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  • ThisTooShallPass
    ThisTooShallPass Member Posts: 101
    edited November 2011

    Hi Melissa,



    I'm 27 and just underwent bilateral mastectomy with reconstruction for prophylactic reasons. My mom passed away at 50 from cancer as well and she battled it since she was 31. After I had my twins (2 y.o. now) I promised myself to do this for my daughter as it was really hard and still is for me without my mom and I dint want her to go throughout the same without me. Like you, I have been through numerous MRIs and mamaos and always get a call back because there is "something" there and i just got tired of it and sick of worrying what it's, so that was the base of my decision. I am also BRCA1 positive and have a strong family history where all women passed away from bc before turning 50. I also was told that I had very dense breast and was told MRIs would be a better option.

    I also wanted to ask, how are you dealing with your mom not being there and raising small kids? Its tough for me. Pm me if you want.

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  • jkp
    jkp Member Posts: 64
    edited November 2011

    I am 42, sitting and waiting for them to either confirm the suspected fibroadenoma or tell me it is something else.  Right now, maybe just because it isn't real yet, I have a really strong inclination towards a PM.  For so many reasons, I think it would be the simplest thing to do.  Simple is a bizarre word to even use, but I guess I am just looking at the long term very pragmatically.  Even if they say this IS a b9 fibroadenoma, I feel like I will forever be waiting for the one that isn't b9.  I have very dense breasts, and this mass did not show on mammo.  I felt it.  But the only reason I even noticed it is that it hurt.  If I feel around, everything feels "lumpy" to me.  I hate the thought of waiting to see which one of those turns into something. 

    There are many wise women on this board who have gone the route of PM and seem very happy about their choice.  The premise that if the threat is gone (or minimalized to the best extent possible), you can concentrate on returning to health and enjoy the rest of your life sounds very appealing to me.  If I have the opportunity to stay off the threads that talk about invasive cancer, I want to do that.

     Arggggg.  Thanks to all of you for being here and available to share your thoughts, feelings, experiences.  Sending love and hugs to you all....

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