Please fill me in

SusanAnne
SusanAnne Member Posts: 245
edited March 2014 in Breast Cancer #1
I am in shock. I thought you ladies would jump all over the Sister Study. Perhaps I described it poorly. For any of you who have sisters who have not been dx with cancer, this is their chance to be a part of the research. It is not a clinical trial, they are not given any drugs, they are just followed. It involves two phone interviews (1 hr each) and a visit to their home by a nurse to take a vial of blood, toenail samples, dust samples etc. Then they might receive a phone call yearly to keep info current. The study intends to register 50,000 women from across the country. If not our sisters, then who??? There is no cost and all info is confidential. The study is funded by legitimate sources and just this minute I found out that a brochure for the study has been included with the ACS mailings for the "Making Strides against Breast Cancer" walks. Please have your sisters consider this. Thanks.
Susan

Comments

  • jamjar62
    jamjar62 Member Posts: 135
    #2
    Susan...sorry I didn't respond but I did email my sister and she said she would register. She is at high risk for breast cancer because of my history, she is 37 and has no children and she is obese. We live in Texas so we are not one of the states currently doing the research but she said she would pre-register. I think its a great idea. I hope others will register as well. I can barely stand the thought of my daughter being at risk for bc but I know she is. My hope is that a cure is found before she has to even think about it and studies like this one are a step in the right direction.

    Karen
  • SusanAnne
    SusanAnne Member Posts: 245
    #3
    jamjar62 said:

    Susan...sorry I didn't respond but I did email my sister and she said she would register. She is at high risk for breast cancer because of my history, she is 37 and has no children and she is obese. We live in Texas so we are not one of the states currently doing the research but she said she would pre-register. I think its a great idea. I hope others will register as well. I can barely stand the thought of my daughter being at risk for bc but I know she is. My hope is that a cure is found before she has to even think about it and studies like this one are a step in the right direction.

    Karen

    Thank you Karen for informing your sister. I'm so happy she is signing on. My sister must have been one of the first to join. In fact, when she first called, they told her that they didn't have a nurse that traveled as far as her quite yet (a suburb of Gainesville, Fla). Within a few months though, they got back in touch and sent someone out. After I posted this I also saw the study listed on Clinicaltrials.gov and from what it says, they are gearing up for a national advertising campaign. My sister and I just recently sent in our photo and story to be posted on the Sister Study website. I'll let you know when it gets posted. I also was in touch with someone on the site and they sent me flyers that I could hand out at my support group meetings and they also sent a bunch to my sister. She works at Shands hospital and they opened a breast center there. The woman who runs it was excited about making them available to all the women. Good luck to your sister. Thanks again.
    Susan
  • EllenM6246
    EllenM6246 Member Posts: 27
    #4
    Hi Susan, I too sent the site to my sister and she plans to register. We are in Maine and also not currently one of the states listed but she is going to pre register anyway.
  • SusanAnne
    SusanAnne Member Posts: 245
    #5
    EllenM6246 said:

    Hi Susan, I too sent the site to my sister and she plans to register. We are in Maine and also not currently one of the states listed but she is going to pre register anyway.

    Thank you Ellen! I feel like a recruiter for the study. I just feel like it is so important. We always talk about how important research is and this is one of the easiest ways for women to participate. Plus it gives our sisters a way to feel like they are helping us. It's a win-win situation! Thanks.
    Susan
  • KarenKL
    KarenKL Member Posts: 42
    #6
    Sorry, but I don't have a sister that's why I didn't reply. If I did have a sister I would help in every way to keep her informed. Thanks for the information though.
    Karen
  • seeknpeace
    seeknpeace Member Posts: 259
    #7
    Hey!! My sister and I are participating. She has signed up. I just didn't tell you, I am sorry. Thank you so much for the info.

    Jan
  • SusanAnne
    SusanAnne Member Posts: 245
    #8
    seeknpeace said:

    Hey!! My sister and I are participating. She has signed up. I just didn't tell you, I am sorry. Thank you so much for the info.

    Jan

    Hey Jan. Thanks so much for telling your sister and joining up. By the way, I've wanted to tell you that from your most recent posts I could see that you've become much more focused and determined. I believe good things will come for you soon. All the best.
    Susan
  • live42day
    live42day Member Posts: 64
    #9
    Susan,
    I haven't been on the site for a while. My sister is a 10 yr breast cancer survivor and I am a 2 1/2 yr survivor so we don't qualify. When my sister was first diagnosed we filled out a survey for a study about hereditary cancer and was contacted a few times. I even called to have a blood test, but there weren't enough in that area to go on with it. Can't remember who was conducting the study.
    Janet
  • SusanAnne
    SusanAnne Member Posts: 245
    #10
    live42day said:

    Susan,
    I haven't been on the site for a while. My sister is a 10 yr breast cancer survivor and I am a 2 1/2 yr survivor so we don't qualify. When my sister was first diagnosed we filled out a survey for a study about hereditary cancer and was contacted a few times. I even called to have a blood test, but there weren't enough in that area to go on with it. Can't remember who was conducting the study.
    Janet

    Hi Janet. I did run across a study which looked at sisters who were both dx with breast cancer. Not sure if it's the same one you looked into. This is the link
    http://www.genbasix.com/default.asp?NodeId=857
    Perhaps the study is better equipped now to accomodate you. They also have a toll free #
    (800) 248-4908 if you are so inclined. Good luck to you both.
    Susan

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