2 of my Aunt's died from breast cancer in their 40's

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happytobealive
happytobealive Member Posts: 23
edited June 2014 in High Risk for Breast Cancer

I cant find a doctor here in the Las Vegas area to do my genetic testing because I'm on medicaid and don't have any money to pay for it out of pocket. I've called my mother several times to find out more about our family history of breast cancer but she wont return my calls. She opts to ignore my phone calls due to her relationship with her husband (pervert from many years ago). I do know that 2 of my aunts on her side had breast cancer and died in their 40's. I feel like I'm stuck between a rock and a hard place. I'm getting a MRI and pet scan tomorrow to find out if the cancer has spread to other parts of my body. I was suppose to have more margin taken out and my nodes checked this coming friday but we've canceled the operation until I can get the genetic testing done. I'm on the phone right now with medicaid waiting to speak with someone. My question is this: If tested positive with the gene would it be okay to just have the tumor removed and then radiation. I've heard that a lumpectomy followed with radiation is just as good as having a bilateral mastectomy. Is this true. The other question is would I be making a mistake in not getting the mastectomy because I would screw my chances of reconstructive surgery if I were to go through with getting the radiation? I hope someone has an answer. What should I expect with a sentinel node biopsy? Side effects? Thank guys. Sure do appreciate it. I'm only at stage 1 breast cancer. By the way I called my mother today to ask her to step up to the plate and be my mom. Wish me luck. I sure do wish I had her by my side. I can't believe that I was dealt these cards. How can a mother (my mother) be so heartless. I feel sorry for her. I wouldn't want to be in her shoes to be that miserable. I guess I'm feeling really alone to be sharing this with you guys. I have a wonderful man in my life but he's not my mom. I miss her so much.... thanks again for any answers you could share with me.

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

    Call you Congressmen/women's office and ask them for their help to get the genetic testing.. that being said your tests (MRI and PET) should not be cancelled to await the genetic testing if you already have a confirmed cancer.  Write a letter to that same Congressmen/women and send a copy to your insurer (no matter that it is Medicaid) as a confirmation of your conversation with that individual on the phone.  Congressmen/women have the power to do what is called a "Congressional action" and it is swift and can eliminate all prior obstacles..

    As for the lumpectomy well there is the rub - do I have the lumpectomy with radiation and take the risk that the skin and muscle will hold up or do I remove the breast (and all that is good about a natural breast).  This decision is all based on your pathology reports..  and it is a very personal decision.  I can tell you that I did remove the breast even though I had a negative BRCA (there was one more factor that the doc's didn't seem to know how to deal with).  I also had reconstructive surgery to replace the breasts.. would I do this again given all the tests results - No.  I (and again this is a very personal decision) lost too much when I lost my breasts - emotionally it is a train wreck and although I am 2+ years out from the surgery it is only recently that I have started to see the light at the end of the tunnel..  Many women get through this really well, I did not..  But you can't move forward until you know all your test results and have studied you pathology report and perhaps, since you are lonely and feel abandoned by your mother - just perhaps a therapist could help you get through this field of mines..  I'm sorry you are so alone Angela, so please speak to us anytime you like but also see if you can get approval for the genetic tests through your congressional representative and perhaps some time with a therapist.. You need to be able to hear your own voice now and there will be so many opinions - one entirely different than the next..

    Good luck and please let us know how things are going!!! Best

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  • happytobealive
    happytobealive Member Posts: 23
    edited June 2009

    It's amazing what a few kind words can do for ones soul. Thank you so much. I am such a strong woman and have traveled the world, lived at least 100 peoples lives in my very short 46 years. I'm glad that I have the loving heart that I do. Once in a blue moon I will have the "missing a mom" feeling and that's okay. I've been able to help other through my trials and life experiences. I've been very fortunate to have had and to continue to have good quality friends and family around me. I honestly can't believe the stories that I've read on this site. I had no idea how many of us are out there. Anyway, I could go on and on but my thanks to you for taking the time to respond. I hope you are doing well and that you too have support through this mess. I have found that the worst thing about this cancer is all the waiting around for the test results. Knowing what we are facing is such a big help. I think it's then we feel we can go on with our lives and get busy living and taking care of business. Talk to you later.;-)

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  • tweekerbeeker
    tweekerbeeker Member Posts: 93
    edited June 2009

    Dear happy, if you are able to get tested, it should be w/ a Certified Genetics Counselor-they are th especialists in this stuff. They could also help you understand the risks down the road, according to your test results and/or family history.

    I personally had bilateral mastectomies and would do it again in a hearbeat. HOWEVER-I had a psychologist at the cancer center who deals with BRCA and decision-making for cancer patients. A therapist with experience in these things can really provide invaluable direction. Best of luck!

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