Survey on genetic testing- please take to help us out!

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Moderators
Moderators Member Posts: 25,912
edited August 2017 in Waiting for Test Results

Medicatinghttps://www.surveymonkey.com/r/testinggenetics

If you've been diagnosed with breast cancer or have a family history of the disease, you may have considered or undergone genetic testing to learn if you have a BRCA1, BRCA2, or other genetic mutation linked to a higher risk of breast cancer.

We'd like to understand more about you and your thought processes as you made the decision to have or not have genetic testing.

Thank you for completing the survey. We will compile the results and share them with the community!

Also, please private message us with any feedback or questions you have regarding our survey!

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  • Pammac47
    Pammac47 Member Posts: 128
    edited March 2016

    Yes, I made the decision to undergo genetic testing. I lost my birth mother, an aunt and several others in family have had breast cancer. Not to mention my father from glioblastoma and numerous other cancers in family tree. So I made decision for our future generations to get as much info as possible. Cancer in my family has too many times been a killer, so I want to know is there a genetic factor. I don't have any results from this testing to date.

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  • Robin31
    Robin31 Member Posts: 1
    edited April 2016

    I joined this community in the hope of helping someone that is trying to make a decision about genetic testing. In January of 2013 I read an article on the NIH website about BRCA testing. I made an appointment with my doctor and asked for the test. After confirming that my insurance would cover the expense; I had it done. I was pretty worried about it. At the time my mother was is the middle of her battle with breast cancer and I had already lost every other female member in my family to either breast cancer or ovarian cancer. A couple months later I got a phone call from my doctor stating my results were negative. It was such a relief. I remember my husband taking me out for supper to celebrate. Two days later the phone rang again, it was the nurse asking me to come in the next morning and speak with the doctor. I didn't understand what was going on. I called my mom and asked her to go with me and the next morning I found out that they had miss read my results. I was the first patient in their office to have the test done. It turned out I was negative for BRCA1 but positive for BRCA2. My mother broke down. She cried for me and I cried for her. After that I saw a surgeon for a consult. The rest of that year was spent seeing my mother through the end of her battle with this disease. She died on Feb 2, 2014(super bowl Sunday) at 12:05 p.m. On April 14, 2014 I underwent bilateral prophylactic mastectomy. My risk of breast cancer went from 87% down to 1%. I opted for nipple removal and reconstruction. The surgery was tough. It took 7 hours, 6 days in the hospital, physical therapy and ultimately 2 more surgeries to get the finished result. It was a tough decision but in the end I couldn't take the chance of leaving my sons without a mother. I couldn't watch them go through what I went through with my own mother. This summer I will have the hysterectomy done and complete this chapter in my life. In my case the decision was the best I have ever made. My breast appear real and though there are spots I can not feel, for the most part they are just like my old one's. I ask myself everyday if it was worth it and the answer has always been yes.

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  • suki1724
    suki1724 Member Posts: 60
    edited April 2016

    I had the 32 gene panel testing done on April 20th. My mom is fighting a stage 3 recurrence, and every female on her side of the family has or had BC, there are also many GI cancers on both sides of the family. I saw a genetic counselor and had a lengthy appointment with her, but I had already decided to go ahead with testing, for my kid's sake, it felt like something I could do for them, as well as myself. I'm anxiously waiting for my results. I think one thing I can say about the process is I didn't even realize how anxious I would be after the blood was drawn. I do believe, however, that knowledge is power, and that if I can be a "previvior" as opposed to a "survivor", it will be worth it.

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  • Zordy
    Zordy Member Posts: 2
    edited May 2016

    I had the test on Feb 2 2016 and my doctor is calling me on Thursday 5/5 night to go over the results. They wanted to see me in person but I just can't right now (its a long drive). Right now I am pretty freaked out because if it was negative they would have told me right away( I'm assuming) they said to leave about half an hour for the phone consult. I had ovarian cancer at 16 and now I'm 58 and have been on HRT for many years. I have a history in my family and I'm of Norwegian descent. I kind of wanted to get the testing as a fluke, figuring it would be negative. I have a paternal aunt who died at age 30 and 2 paternal cousins who had Bca. I also have a paternal cousin who had lymphoma. So I am in a holding pattern, but I am praying and putting my faith in The Lord. At least I will know what my options are soon....but the waiting is tough.

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2016

    DebbieBasile, they may not be permitted to discuss it over the phone, so try to breathe, and do some nice things for yourself while you are waiting these few days. Are you taking someone with you for the appointment? We can imagine that the long drive could be very stressful getting there if you are worried. We're all here for you!

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  • Zordy
    Zordy Member Posts: 2
    edited May 2016

    my doctor is going to call me Thursday night. I just talked to my sister and she is a nurse practitioner and is furious that my dr would keep me waiting until Thursday. But I like her and I trust her. I will post my results once I find out my results. This forum in s amazing. I feel very supported. Thank you!!

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  • fleur-de-lis
    fleur-de-lis Member Posts: 107
    edited August 2016

    my maternal side of the family is riddled with cancer. From breast, colon,stomach,prostatecancers.

    I ended up being considered "uniformed"

    Story below, if more information needed or desired

    I had an appt with a genetic consular at M.D. Anderson. I also had several visits with the head geneticist.I had the BRACA1-2 test ran as well as the P10 and P53 mutations due to a phyllodes tumor that I had back in 2009. Phyllodes tumors were less than 0.05% of all tumors at that time. I do think they have increased numbers in the last few years. All of the genetic test were negative. So I am an uninformed genetic type.My mother died of ovarian cancer that was very aggressive and spread quickly. My aunt on the other hand survived breast cancer before the age of 40, and ovarian cancer in her late 40s. She survived these cancers a very long time ago and she just died this past year at the age of 98. It was dementia along with simple old age that returned her to her maker.

    As an aside, I also deal with some comorbodities. Factor V Leiden, which is a germ-line genetic clotting mutation, MTHFR ( you do not covert your methyl donors correctly, also known as hyperhomocysteinemia) and CVID, or Common Variable Immune deficiency. CVID was once considered "idiopathic", but just recently the IKAROS gene has been implicated in the condition. This would effect cancer therapy, as I already deal with a sub par immune status, so I will "try" to get back into MDA ( Ho Humm😁) and see what, if any, immune testing might be available ( and will insurance pay?)


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  • fleur-de-lis
    fleur-de-lis Member Posts: 107
    edited August 2016

    Zordy

    When I had the genetic panels ran, over 7 yrs ago, they made you come into the office for the test results. Everything was negative, but because the family is cancer ridden, I am still considered high risk.

    So they most likely need the time to explain this all to you, as there are several factors involved with genetic testing. Even if you are completely negative....so nothing to fear at this time😎


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  • keepthefaith611
    keepthefaith611 Member Posts: 131
    edited October 2016

    Robin31 - wow, I am sorry about the switch up 1 to 2 for you - thank you for sharing as I have had recent bad experiences with my regular MRI facility getting the math wrong on 2 of my most recent tests - simple math errors but it makes you realize that it is important to underscore the entire test result with the doctors. Thankfully my doctor picked up on the math errors but it is proving difficult to get the MRI facility to change their records - a few more hours on the phone next week should solve it (hopefully). I won't be returning there anyway. That said:

    As for those who have family histories of cancer, the same goes here. It's on my Dad's side - colon, breast, lung, stomach but not on my Mom's side. Do you have to have a relative with BRCA 1 or 2 to consider genetic testing or should you think about it if you have a family history of cancer in general?


    All the best to each of you for sharing.

    KTF 611

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  • Kicks
    Kicks Member Posts: 4,131
    edited October 2016

    I did not have any genetic testing done. It was not recommended by any of my Drs and I didn't think it was needed either. There had been no types of cancer on either side of my family for at least 4 generations but I turned up IBC.

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  • Msjackiefan
    Msjackiefan Member Posts: 31
    edited July 2017

    I had the testing to determine if chemo was warranted, even before I saw my medical oncologist, to whom I was turned over after my surgery. My surgical decision was based on findings and an increased risk to the opposing breast; but I knew I wanted to know if anything more was needed. I was also worried about my siblings, even though as one doctor wisely told a sibling, "Her diagnosis niether decreases nor increases your risk." I scored 0-17, where the higher the range score, the more concerned for genetic mutations, and therefore, higher likelihood of chemo. So mine was deemed isolated to the breast, and since I had no immediate family issues related to breast cancer, I was told chemo was not warranted.

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