What kind of BC?

linpsu
linpsu Member Posts: 747
edited March 2014 in Breast Cancer #1
I was asked by a new physical therapy assistant today "what kind of breast cancer do you have?" I was kind of stumped by the question, as I know that non-BC people (as I was prior to diagnosis)have no clue about all the different kinds. She is really clueless anyway, since she asked me how come she could feel a breast when she did therapy on me and I had a mastectomy? Hello??? Prosthesis????

So anyway, when someone non-medical asks you this question, what do you say? Do you define your BC according to DCIS,LCIS, IDC, ILC, IBC, etc.? Not that any non-cancer patient would know what that means.

Or do you define it by hormone receptor such as ER+, PR+, etc? I told her I was triple negative and she had no idea what that meant. She said that all she knew was that cancer that was estrogen related was the worst kind. Now maybe I'm wrong, but I said at least ER positive had drugs that could be taken to prevent reoccurence, which I don't have the option of taking (I've already had a reoccurence two years after my first BC).

Or do you define your cancer by the stage you are in? With most of the people I know, I am very vague in my answers, knowing that they too would have no idea what all the different terms mean. I usually say mine is not a good kind to have (not that any kind is!!!), as there are very limited treatment options available.

I know this seems like a very rambling question, but I am curious as to what all of you tell people when/if they ask you what kind of BC you have. Thanks for your help!
Linda

Comments

  • carkris
    carkris Member Posts: 4,553 Member
    I guess I have never been
    I guess I have never been asked that, but I dont go into much detail. more for self preservation. People who dont deal with it dont understand it. There are so many variations upon the theme. I dont want to deal with too many explanations. I think people are shocked it was not found early as I had been followed so closely particularly the year I was diagnosed. (after I found it) so I say that it was not found on mammo. I remind people to do BSE's and mammos and MRIs but other than that dont say much.
  • Akiss4me
    Akiss4me Member Posts: 2,188
    carkris said:

    I guess I have never been
    I guess I have never been asked that, but I dont go into much detail. more for self preservation. People who dont deal with it dont understand it. There are so many variations upon the theme. I dont want to deal with too many explanations. I think people are shocked it was not found early as I had been followed so closely particularly the year I was diagnosed. (after I found it) so I say that it was not found on mammo. I remind people to do BSE's and mammos and MRIs but other than that dont say much.

    I am always asked....
    I say 'how much do you want to know?' because sometimes that is all they can think to say (or ask) about your cancer, but really are not prepared to stay on the topic. It is my chance to spread as much knowledge as I can, because we all know knowledge is power. I find that alot of people are so intrigued with the info. Of course you have to be prepared to give explanations to everything you are talking about. I am not shy about talking about my experience and enightening another person to the number 2 killer among women. Early detection is key and they now have a heads up and are better informed what it is all about. And they see me smiling and living life in spite of having cancer, which is a relief to them that it is not taboo to talk about!
    Pammy
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    never asked
    so never thought about reply..I guess I would just say DON"T really know..
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    I have Inflammatory
    I have Inflammatory BC...very rare, most women know nothing about it, and it doesn't always present with a lump. So, like Pammy, I feel like it is my opportunity to do some educating. I usually go into the symptoms of IBC, so women will know what to look for and will do a visual exam of their breasts as a part of their monthly self exams. When I see that I'm loosing them, or have given too much detail, I stop.

    I hope this helps.

    LInda
  • MAJW
    MAJW Member Posts: 2,510 Member
    I answer simply..........
    Triple negative......then I add, it's to long to explain.....if you want to know more, look it up!
  • jnl
    jnl Member Posts: 3,869 Member
    I don't really define myself
    I don't really define myself by cancer, but, if someone wants to get technical or medical, I tell them. I had invasive and ductal, am ER and PR+, HER2 negative. I had a lumpectomy and rads. And, living a full life now, free of cancer!


    Hugs, Leeza
  • Megan M
    Megan M Member Posts: 3,000
    Akiss4me said:

    I am always asked....
    I say 'how much do you want to know?' because sometimes that is all they can think to say (or ask) about your cancer, but really are not prepared to stay on the topic. It is my chance to spread as much knowledge as I can, because we all know knowledge is power. I find that alot of people are so intrigued with the info. Of course you have to be prepared to give explanations to everything you are talking about. I am not shy about talking about my experience and enightening another person to the number 2 killer among women. Early detection is key and they now have a heads up and are better informed what it is all about. And they see me smiling and living life in spite of having cancer, which is a relief to them that it is not taboo to talk about!
    Pammy

    I am like Pammy, I feel
    I am like Pammy, I feel knowledge is power, so, if a girlfriend or just a friend asks me about my bc, I tell them. I am proud of what I have survived and gone through.

    At first, my girlfriends just thought I should be my old self again, after I was finished with treatments. After being so upset and getting all of the support here from my sisters, I had a long talk with them, explaining what I had been through and how I have changed. And, not necessarily for the worse.

    Early detection is so important and by someone burying their head in the sand and not having one done is just plain stupid.

    I always figure bc is bc, regardless of any staging or typing. It all sucks.


    Megan
  • ladybug22
    ladybug22 Member Posts: 646
    I B C
    gabe and abby mom said it all thats what i try to do
  • carkris
    carkris Member Posts: 4,553 Member
    ladybug22 said:

    I B C
    gabe and abby mom said it all thats what i try to do

    I still dont know what to
    I still dont know what to say many times. It is so real to me, but I know from past experience people think "isnt she over that yet?" One of the reasons I love this board. I do try to plant seeds, this is what I am doing,,,,, Vit D level, aspirin, etc... signs and symptoms, etc... but I dont want to give details, they dont understand and it protects me. I am the kind of person who reacts to the way others react to me. I become anxious, I feel more protected keeping details to myself. I know this is just me, and I admire others who are more up front. I think it also is the people you are dealing with too. That is a factor on how safe I feel disclosing details. I think the only one who really knows all is my docs and my husband.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    carkris said:

    I still dont know what to
    I still dont know what to say many times. It is so real to me, but I know from past experience people think "isnt she over that yet?" One of the reasons I love this board. I do try to plant seeds, this is what I am doing,,,,, Vit D level, aspirin, etc... signs and symptoms, etc... but I dont want to give details, they dont understand and it protects me. I am the kind of person who reacts to the way others react to me. I become anxious, I feel more protected keeping details to myself. I know this is just me, and I admire others who are more up front. I think it also is the people you are dealing with too. That is a factor on how safe I feel disclosing details. I think the only one who really knows all is my docs and my husband.

    I have the opposite problem .. I tell them too much.
    soon there is that 'deer in the headlight' look in their eyes. I've been pearing down my breast cancer speeches .. to DCIS, along with Her2 positive. I find it funny as well as frustrating that most people think there is only 1 type of breast cancer .. and that all breast cancer victims share the same diagnosis ..

    I will now take Pammie's advice and ask them how much do they really want to know ..


    Vicki Sam
  • Pinkpower
    Pinkpower Member Posts: 437
    I went to the a doctor on
    I went to the a doctor on 12/31, (I have Bronchitis) and she asked me what kind of breast cancer I had, but in my mind I was like "does it really matter what kind? Really? So I didnt even answer her. To me BC is BC, no matter what type, grade or what ever? We are all Survivors!