Newly diagnoised with breast cancer

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Cindy Ann
Cindy Ann Member Posts: 101
edited March 2014 in Breast Cancer #1
I have run into a very unusual experience., I after being told 4/24/10 I have breast cancer. (my surgeon met with me and was wonderful.)I met her nurse who gave me a bag and in it was a lot of ACS material to read. The next day when I became unfrozen the fear set in. When I called my doctor she was out of town as was her nurse for the rest of the week. I reached out to ACS. Who took my infor and set me up with a phone survivor. Today the doctor's nurse called me and was upset that I had reached out to ACS. She said I am supposed to only ask them questions becauce they know my cancer and my treatment plan etc.. She made me feel like crying for calling ACS. She said someone from there had called and wanted to know why they were leaving me in such a state after being told I have cancer. I was shocked.I didn't know how to respond. I am now angry this is my body and my life why give me info and get defensive or insecure when I use it?? Help, I am now feeling I made a bad decision in choosing my doctor based on how I was treated by her nurse. I am a nurse and never have talked to any adult patient like that. I now want a second opinion but am afraid( stupid huh?) to even ask for my records. I also know this is the best ca surgeon in my area. But her nurse represents her and if this is how her nurse treats her patients and I have to deal directly with her for coordination of care. What am I to do? I am scared to death of this cancer. My mother had it. I know what road I have to travel. Long post but anyone with ideals please feel free to advise me.

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  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #2
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    Cindy Ann
    I'm so sorry for the reason you have to be here, but glad you found this wonderful resource. You will find a very understanding and supportive group of women and med here.

    Of course you are scared witless. We all are, especially in the beginning. Shame on that nurse for first not giving you a way to contact someone when they were not in the office, and even moreso for scolding you when you reached out for answers and support. My guess is that she may have been scolded herself by whoever called her, but that is no excuse.

    I would try to talk to your doctor about your concerns. Your mental and emotional well being are just as important as your physical, and you have the right to insist on being treated with respect and caring.

    In the meantime, come back here as often as you need to for support, answers from those who've walked this path, and even for laughter.

    Hugs,
    Cindy
  • XO143XO
    XO143XO Member Posts: 23
    #3
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    Cindy Ann
    OMG! That really makes me mad. I am so sorry that happened to you. There is no excuse for that nurse to treat you like that and I hope you are able to discuss it with the doctor. Hopefully, you will get reassurance from the doctor (A) The nurse will never treat you or anyone like that again, and (B) The doctor treats you the way you deserve to be treated, if not you may want to consider changing doctors.

    Personally, I have to have confidence in my doctor's ability but I also need and deserve someone that takes the time to be there for me when I need them.

    The good news is that you found this wonderful, supportive, group!

    Keep us posted and remember you have freinds here that understand.

    Kristi xoxox
  • Cindy Ann
    Cindy Ann Member Posts: 101
    #4
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    XO143XO said:

    Cindy Ann
    OMG! That really makes me mad. I am so sorry that happened to you. There is no excuse for that nurse to treat you like that and I hope you are able to discuss it with the doctor. Hopefully, you will get reassurance from the doctor (A) The nurse will never treat you or anyone like that again, and (B) The doctor treats you the way you deserve to be treated, if not you may want to consider changing doctors.

    Personally, I have to have confidence in my doctor's ability but I also need and deserve someone that takes the time to be there for me when I need them.

    The good news is that you found this wonderful, supportive, group!

    Keep us posted and remember you have freinds here that understand.

    Kristi xoxox

    Newly diagnoised with Breast Ca
    Thank you for your advice.I think the nurse was most likely given a blasting for leaving me without support. I agree I need 100% confidence in my doctor's ability to not only get this monster inside my breast out but also to help me with my emotional well being. I was numb when I found out. Then I cried, and now I am angry. I am going to ask for a appt with the doctor to discuss my feelings. If she does not satifsy them and makes me feel this will never happen again. I will go elsehere. I have a few weeks to find another doc. All my tests are done.So it should not be that hard. I think if the nurse feels ACS and also if the doctor decides to support her they should refrain from putting their material in the famous "you've got cancer" pink ribboned bags. I really am confused over this all. Did you wake up every morning and remember this isn't a bad dream? Have you had someone you love tell you stop dwelling on it? I have only known for a week. It is all consuming.. The what ifs...

    Hugs and Blessings,
    Cindy Ann
  • Cindy Ann
    Cindy Ann Member Posts: 101
    #5
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    cindycflynn said:

    Cindy Ann
    I'm so sorry for the reason you have to be here, but glad you found this wonderful resource. You will find a very understanding and supportive group of women and med here.

    Of course you are scared witless. We all are, especially in the beginning. Shame on that nurse for first not giving you a way to contact someone when they were not in the office, and even moreso for scolding you when you reached out for answers and support. My guess is that she may have been scolded herself by whoever called her, but that is no excuse.

    I would try to talk to your doctor about your concerns. Your mental and emotional well being are just as important as your physical, and you have the right to insist on being treated with respect and caring.

    In the meantime, come back here as often as you need to for support, answers from those who've walked this path, and even for laughter.

    Hugs,
    Cindy

    Thank You
    I needed someone to tell me it's normal to be scared. I am going to set up a appt with the doc and discuss this and other things that I feel were left out. I felt rushed. No one should feel rushed. I think the nurse is heavy handed for reason's she only knows. I do agree the ACS person may have scolded her. She had it coming. You don't leave a person like that.I wasn't crying or wringing my hands in fear during my 1st visit because I was numb and scared. I do not cry in public easily. I have shed thousands of tears in my own home. Thank you for being there. I need support and understanding from people like you. I have now joined a group of super women like yourself and while I know it's going to be a long road, it is good to know there are( I'm sorry) others out there who feel my pain.

    Hugs and lots of Blessings,
    Cindy Ann
  • GrandmaJ
    GrandmaJ Member Posts: 209
    #6
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    I understand what you are
    I understand what you are saying. I had the same feelings after being told in 7/09 that I had breast cancer. I didn't know where to turn. Who to talk to...what to do. I expressed my dissatisfaction of being told over the phone I had bc and then nothing. They told me there used to be a person who counseled bc patients immediately after their diagnosis, but that person was let go due to cut backs in hospital personnel. Nice !!

    Finally, I found help in the surgeon's nurse who called me two days later. She was wonderful and has continued to help me through this. But they don't realize that a person needs help immediately after that dreadful diagnosis. Unfortunately, I didn't find this site until my chemo was over.

    I would definitely talk to your oncologist or surgeon and express your feelings about these things. You might also consider talking to your PCP or consulting a psychiatrist for some medication to help you through the anxiety of this diagnosis. I did and it helped me immensely. I don't know if you have to have chemo or just a lumpectomy/radiation....but it is all do-able and Im sure you will be fine.

    Judy
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #7
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    Cindy Ann, welcome to this
    Cindy Ann, welcome to this amazing group!! I think your decision to meet with the surgeon and express your concerns is the right thing to do. You are just in the beginning phase of treatment and may have additional treatments once surgery is completed. It is very normal to "feel lost" when we are first diagnosed. I immediately went on line to obtain as much information as I could. I had experienced cancer in my life but not breast cancer and therefore I needed knowledge. Shame on that nurse for scolding you. She's the one that needs a lesson in "how to treat people". I'm glad you found us and please ask as many questions as you have and someone on here will have knowledge to share. Take care.
  • Cindy Ann
    Cindy Ann Member Posts: 101
    #8
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    MyTurnNow said:

    Cindy Ann, welcome to this
    Cindy Ann, welcome to this amazing group!! I think your decision to meet with the surgeon and express your concerns is the right thing to do. You are just in the beginning phase of treatment and may have additional treatments once surgery is completed. It is very normal to "feel lost" when we are first diagnosed. I immediately went on line to obtain as much information as I could. I had experienced cancer in my life but not breast cancer and therefore I needed knowledge. Shame on that nurse for scolding you. She's the one that needs a lesson in "how to treat people". I'm glad you found us and please ask as many questions as you have and someone on here will have knowledge to share. Take care.

    Bad Nurse with the new breast ca patient
    I want to thank everyone who has responded to my e-mails. It gave me courage to call my surgeon's nurse and without being overly offensive tell her I will not except that type of treatment again. From her or anyone else in her office. I told her that I can talk to anyone I want about my body, my feelings, and my life. I am a intellgient woman not a child. I told her I did not feel many women would respond to the way I was treated any differently and she should think about that before she speaks to the next person in that manner. I also thanked her for making me angry. It helped me get in touch with a wonderful group of new friends(this board) and see things more clearly. She of course was shocked(she did shock and awe on me) favor returned. I told her I will see the doctor before my surgery. She as her nurse has no say in that.I took my control back. I am now faced with new questions. One is I cannot have the MRI I am deathly allergic to the dye they inject. There is no other way beside mammo and Utra sound to see if there is any more cancer. With out the dye the MRI will not be clear. So I planned a lumpectomy now I will be asking her if mastectomy is better? I am in the early stages with a slow growing cancer in the duct.Will decide then what I will do. I have a few weeks to make my descion. Thank you ladies for giving me the courage to speak my mind..

    Hugs and Blessings, Cindy Ann, Super Newbie Girl!!!!!!!
  • CarrWilson
    CarrWilson Member Posts: 111
    #9
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    Welcome
    Boy, I wonder if we went to the same MD??? Probably not, but my nurse coordinator was horrible. I totally loved the MD and he had a great reputation, but could not see myself going where she was for every appointment. She actually told me I could not make an appointment unless she went over my records to make sure I "really" had cancer and then she would have to OK it. I got a second opinion and felt very confident in the second MD. I am also a nurse and was shocked at how I was treated like a child. I know I was shaking and upset, but very accepting about my diagnosis. The way I was talked to was almost insulting. I received one of those survey questionnaires and did not hold back! I knew the MD personally and let him know how upset I was, and felt bad when he just said, "yeah, I know". Once you have someone in that position it is hard to get rid of them. How frustrating for all of the patients!

    I just wanted to say welcome to this group, you will find a lot of support. Don't feel bad about asking the ACS for help, and hopefully the phone support was helpful. We have to stick up for ourselves. This is our body, our decisions, and we have to go with whom we trust.

    Best of Luck with these tough decisions!

    - Carrie

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