Wondering

Dakota128
Dakota128 Member Posts: 14
in Breast Cancer #1
I was diagnosed with DCIS in the R Breast after a 5LB removal of breast tissue from a reduction, I got a nice suprise. Well, that's what all the Dr's told me including the oncologist.
My choice is to have a double mastectomy to ease my mind that it won't come back, however, my husband is tending to move towards the radiation and hormone therapy. I've had at least 22 operations over the past 34 years and in since 5-2011 until now I've had 3 operations due to a car accident.
I know I won't feel less a woman because I don't have breasts (I lost my uterus when I was 25)and it's what's inside that counts. I was a 46DD and now I'm a 46B and can't find any bras that come in that size, that is so funny. My doctors are sending me Fox Chase in Philadelphia because the local Dr's said I don't have any margins for them to perform the mastectomies here. I was told I don't have any tissue left to pull up..What is that? What are Margins? Is it better to have Reconstruction done right then? So many questions...
I'm just filled with confusion. I'm sure we've all been there or are still there....
Thanks for listening...

Dakota128

Comments

  • New Flower
    New Flower Member Posts: 4,294
    #2
    Welcome to the board
    Hello Dakota,
    Welcome to the board. Sorry, thar you have gotten these shocking news, however there is a positive side it has been caught early, and because of proactive approach of your doctors very treatable. Please go to Chase Fox for consultation, second opinion is very important to your situation . Clear margins mean that all cancer is taking out plus additional tissue which free from cancer. Breast MRI probably will be a good idea. Usually a big institutions like Fox Chase prefer their own imaging services. Your doctors probably took too much skin out, therefore they do not feel comfortable to perform mastectomy, however breast breast surgeon, who is specializing in this type of surgeries every day will find a solution for you.
    With your health issues you and your team need to decide what is best for you. Radiation has its own limitation and side effects as well.
    Keep us posted
    Best of luck to you
    New Flower
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #3
    I agree that you should have
    I agree that you should have the consultation at Fox Chase, they have a very good reputation. I also think you should start making a list of all your questions, keep it handy so that you can write them down when they pop into your mind. In consultations, I also find it helpful to bring someone along. They may have questions you didn't think about. More important, there is so much information to absorb it is helpful to have a second set of ears. Finally, be sure to schedule a long appointment so the doc doesn't feel rushed and you are able to get all your questions answered.

    One caution on a double mastectomy...surgeons don't remove ALL of the breast tissue. So there is still a CHANCE it might come back. One of the questions you'll want to put on the list is what is the chance of recurrence/mets if you do bilateral vs radiation and hormone treatments?

    As for the confusion, that will go away as you get your questions answered. I have always thought that information is power...you will gain power as you gain information.

    Please come back and let us know how you are doing. Best wishes.

    Hugs,

    Linda
  • Dakota128
    Dakota128 Member Posts: 14
    #4
    New Flower said:

    Welcome to the board
    Hello Dakota,
    Welcome to the board. Sorry, thar you have gotten these shocking news, however there is a positive side it has been caught early, and because of proactive approach of your doctors very treatable. Please go to Chase Fox for consultation, second opinion is very important to your situation . Clear margins mean that all cancer is taking out plus additional tissue which free from cancer. Breast MRI probably will be a good idea. Usually a big institutions like Fox Chase prefer their own imaging services. Your doctors probably took too much skin out, therefore they do not feel comfortable to perform mastectomy, however breast breast surgeon, who is specializing in this type of surgeries every day will find a solution for you.
    With your health issues you and your team need to decide what is best for you. Radiation has its own limitation and side effects as well.
    Keep us posted
    Best of luck to you
    New Flower

    Wondering
    Thank you so much for your thoughts on my situation it is very much appreciated. I will be on here quite often and will keep you aprised of the situation.

    Thank you sincerely,

    Dakota
  • Dakota128
    Dakota128 Member Posts: 14
    #5
    Gabe N Abby Mom said:

    I agree that you should have
    I agree that you should have the consultation at Fox Chase, they have a very good reputation. I also think you should start making a list of all your questions, keep it handy so that you can write them down when they pop into your mind. In consultations, I also find it helpful to bring someone along. They may have questions you didn't think about. More important, there is so much information to absorb it is helpful to have a second set of ears. Finally, be sure to schedule a long appointment so the doc doesn't feel rushed and you are able to get all your questions answered.

    One caution on a double mastectomy...surgeons don't remove ALL of the breast tissue. So there is still a CHANCE it might come back. One of the questions you'll want to put on the list is what is the chance of recurrence/mets if you do bilateral vs radiation and hormone treatments?

    As for the confusion, that will go away as you get your questions answered. I have always thought that information is power...you will gain power as you gain information.

    Please come back and let us know how you are doing. Best wishes.

    Hugs,

    Linda

    Thank You
    thank you Linda for your cheerful thoughts and great advice. I know everything will turn out well, I have faith in everything in life.

    I hope you are doing well also.

    Please keep in touch as I will also.

    Hugs,

    Dakota a.k.a. Deborah
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #6
    The good thing about DCIS is
    The good thing about DCIS is that it is ONLY contained within the milk ducts. I am glad you are getting a second opinion.

    In the meantime, I would suggest reading up on DCIS at cancer.org and breastcancer.org. Both have wonderful information on the basics of cancer, and types of breast cancer and treatments, side effects. You can even call the American Cancer Society at 1-800-227-2345 and tell them you have DCIS and need information. They can email you the links that you need information on.

    The good news if you have pure DCIS is that chemo is not used to treat it.

    I suggest you write down all your questions for the doctors you will be seeing. The American Cancer Society even has some written down on the website for people.

    I was told by the head of the Oncology Dept. at one of our local cancer centers, that in theory, IF you have PURE DCIS, which is only in the milk ducts and you have a mastectomy on that breast, the cancer should be gone. That being said, there are incidences where women have had DCIS and a mastectomy on the cancerous breast and had it come back. Very few have that happen, though. DCIS is a just a bit different than Stages 1-4 breast cancer seeing that it is only in the milk ducts.

    Since you found your DCIS "accidently" you don't know your margins as of yet. Clean margins are acceptable levels of noncancerous tissues from where the cancer ends. Seeing you have large breasts, and I am assuming possibly dense, I would ask if an MRI would be appropriate in your case.

    I made up my mind for a double mastectomy very easily. The breast surgeon drew a picture of my breast on a white board after my lumpectomy and my milk ducts were riddled with cancer and precancer. It is so individual as to how you choose your treatment.

    Please bear in my mind, that although your husband is trying to be helpful...it is ultimately up to you since you are the one that has cancer.\

    Learn about your cancer and ask questions. I think that is the best advice and hopefully the answers will come.

    Keep us posted and I wish you the best.
  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #7
    Welcome Dakota128
    Everyone is different and only you can make the final decision on what to do. I would definitely goes for the second opinion. Do you live in Pennsylvania, since they are sending you to Philadelphia?

    This is a great place to read, ask questions, cry, scream, vent, or whatever you feel like.

    xoxo,
    Jean
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #8
    I would take hubby's opinion
    I would take hubby's opinion but in the end ONLY you can decide. I had lumpectomy 4 yrs ago and partial lumpectomy last week. (MY daughter said why not have PS? I said I have had at least 16 surgeries in my life-NO more UNLESS totally have to. Like you I had some for car accident, bike accident.

    I made list of questions for my appt last week prior to surgery and it helped...

    I wish you the best...

    Denise

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