Aunt Diagnosed- but doctors still have not told us what stage

katjames
katjames Member Posts: 2
in Breast Cancer #1
Hello,

My husband's Aunt Eileen recently found out she has breast cancer. The doctor called her and told her OVER THE PHONE!!! So this is not off to a good start by any means. She was informed over two weeks ago now. She has been back to the doctors twice to receive NO additional information.

My Mother is a 15 year Survivor!! I do not remember it taking this long to get answers. Eileen is on Mass Health and I am so concerned she is not getting the best care possible. I feel like they should have first called her in to discuss this in person, in addition they should have more answers for her. Can anyone shed some light on this? How long does it take to find out what stage it has progressed to? Is thre anything we can do to ensure she receives the best treatment while on Mass Health? We have so many amazing hospitals here and they are not even sending her to any of them. It is so frustrating, I just want to help in anyway I can.

Thank you in advance for any feedback/support you are able to offer! And bless you all!!

~Kat

Comments

  • missingtexas
    missingtexas Member Posts: 146
    #2
    First I want to say that I
    First I want to say that I am sorry to hear about your aunts diagnosis. I never discussed stage with my doctors. I knew it hadn't jumped systems so it wasn't a four. I was 3 months into treatment when I asked and to be honest, it changed nothing. Also, I think you will find that based on the type etc of cancer, there is pretty much a standard of care. At one point, I was being treated at one of the top women's hospitals in the country because we had moved and they were giving me the exact same treatment as I was receiving at another hospital. As far as the phone part, I don't know, if they had told me to come in to discuss, I would have demanded immediate info. Keep doing your research, but hopefully you'll find she's getting great care. Good luck!!!
  • katjames
    katjames Member Posts: 2
    #3
    missingtexas said:

    First I want to say that I
    First I want to say that I am sorry to hear about your aunts diagnosis. I never discussed stage with my doctors. I knew it hadn't jumped systems so it wasn't a four. I was 3 months into treatment when I asked and to be honest, it changed nothing. Also, I think you will find that based on the type etc of cancer, there is pretty much a standard of care. At one point, I was being treated at one of the top women's hospitals in the country because we had moved and they were giving me the exact same treatment as I was receiving at another hospital. As far as the phone part, I don't know, if they had told me to come in to discuss, I would have demanded immediate info. Keep doing your research, but hopefully you'll find she's getting great care. Good luck!!!

    knowing what stage...doesn't matter!!! You are Right!
    Thank you so much, missingtexas! You are so right about knowing what stage it is at does not change much. I have a good friend in her 30's who has one year old twin boys fighting Stage 4 cancer. I also have another friend in her later 40's who is a survivor of stage 4. It is ridiculous how many people have been diagnosed around me. And again, you are so right, I know I would have done the same about demanding the information right away. It is so helpful 'speaking' to strong women like yourself that understand this and what we are going through. I need the insight as well as a level minded individual to keep me focused on the journey ahead and remaining positive.

    Thank you again! I hope you are doing AMAZING and living life to the fullest!
  • Rague
    Rague Member Posts: 3,653 Member
    #4
    What's wrong with being told
    What's wrong with being told results over the phone? I was told over the phone the morning after biopsy.

    IF your Hubby's aunt has seen the Drs twice since DX - it's highly probable that she's been told a lot more than she's choosing to pass on. It is also possible that she needs someone to go with her to actually 'hear' what she was told. Might suggest that she take someone with her to talk to the Drs so there are other 'ears' to hear what is said. Or she might just not want to tell all she has been told to everyone. I don't know anything about whatever Mass Health is but I do know that the only people who can legally get info from Drs is either the person or ones that she has stated with the Dr's office.

    Be there to support her in what she needs but support her even when she doesn't ask.
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    #5
    A couple of things to consider.
    Now days with managed care most people do not get a chance to hear the results directly from thier doctor. They get a phone call and then schedule a visit to discuss what is known.

    Unfortunatlely until the tumor is removed through surgury and sent to pathology the doctors do not know what type of breast cancer they are fighting. There are about 5 or 6 different kinds and even then some of those with breast cancer have a combination of two or three diffent kinds in the same tumor.

    We know so much more than we did 25 years ago when my grandmother had breast cancer. Even though they knew less my grandmother survived breast cancer past the 10 year point. She got another cancer later (not related to the breast cancer) and lived to the ripe old age of 85. I'd say that these were pretty good odds considering this was 25 years ago when they knew less. I held on to these thoughts while getting my treatment and it carried me a long way.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #6
    sorry waiting to find
    sorry waiting to find out..can someone just call and ask or go to appt with her? I took 2 people for extra ears and questions when I went..

    I TOO was told over the phone..I was told not bad but not good DCIS..i had to look up online and saw cancer!

    Anyhow...I wish you luck finding out some info asap..

    thinking of you and your family

    Denise
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #7
    disneyfan2008 said:

    sorry waiting to find
    sorry waiting to find out..can someone just call and ask or go to appt with her? I took 2 people for extra ears and questions when I went..

    I TOO was told over the phone..I was told not bad but not good DCIS..i had to look up online and saw cancer!

    Anyhow...I wish you luck finding out some info asap..

    thinking of you and your family

    Denise

    Laughs -a-lot .. is correct !
    Until the tumor is removed and sent to Path can the breast cancer stage be determined.

    In my case .. first path .. resulted in stage 0, DCIS, HER2 positive

    2nd opinion at St.Joseph's/UCLA Cancer Center .. requested tumor from
    Hospital where I had my lumpectomy -- 3 weeks later ..

    2nd path ... resulted in stage 1 (not 0), DCIS, HER2 positive

    More importantly, is that fact that I had the opportunity to seek and find a Breast
    Cancer Specialist -- my 2nd opinion -- where I felt more confident with my
    treatment, chemo infusion, and reconstruction.

    I hope that your Aunt has that opportunity -- if not, please have her make a
    consultation appointment with her Doctor -- ASAP! Her stress level must be
    unbearable..

    Strength, Courage and HOPE for a Cure.

    Vicki Sam
  • Megan M
    Megan M Member Posts: 3,000
    #8
    VickiSam said:

    Laughs -a-lot .. is correct !
    Until the tumor is removed and sent to Path can the breast cancer stage be determined.

    In my case .. first path .. resulted in stage 0, DCIS, HER2 positive

    2nd opinion at St.Joseph's/UCLA Cancer Center .. requested tumor from
    Hospital where I had my lumpectomy -- 3 weeks later ..

    2nd path ... resulted in stage 1 (not 0), DCIS, HER2 positive

    More importantly, is that fact that I had the opportunity to seek and find a Breast
    Cancer Specialist -- my 2nd opinion -- where I felt more confident with my
    treatment, chemo infusion, and reconstruction.

    I hope that your Aunt has that opportunity -- if not, please have her make a
    consultation appointment with her Doctor -- ASAP! Her stress level must be
    unbearable..

    Strength, Courage and HOPE for a Cure.

    Vicki Sam

    I knew I had bc from my
    I knew I had bc from my ultra sound guided core biopsy. I then had a MRI to see if the cancer was anywhere else in my breasts before I had my lumpectomy. I had a lumpectomy and my oncologist got the path report and went over it with me which told me the grade, type of bc, stage etc. and answered any questions I had. I started rads 6 weeks after my lumpectomy.

    Your husband's Aunt does deserve better treatment and answers. Is there any other doctor she can go to?


    I will be praying for her.


    Hugs, Megan
  • camul
    camul Member Posts: 2,537
    #9
    Megan M said:

    I knew I had bc from my
    I knew I had bc from my ultra sound guided core biopsy. I then had a MRI to see if the cancer was anywhere else in my breasts before I had my lumpectomy. I had a lumpectomy and my oncologist got the path report and went over it with me which told me the grade, type of bc, stage etc. and answered any questions I had. I started rads 6 weeks after my lumpectomy.

    Your husband's Aunt does deserve better treatment and answers. Is there any other doctor she can go to?


    I will be praying for her.


    Hugs, Megan

    I didn't get the stage
    until after the scans and mastectomy. I knew it was positive after the ultrasound, they did a biopsy, but woke me in the middle and told me they couldn't get clear margins and scheduled the mastectomy that day for one week later. In that week, I had a pet scan, bone scan, saw a plastic surgeon. Then met with the surgeon two days after the mastectomy and she gave me information, and helped me find an oncologist. But it was not until they had all the info that I was given the stage, grade etc.

    Good luck, I would also make sure that she has another set of ears. I remember hearing so much then my mind would just shut down.

    Wish all of you the best.
  • Megan M
    Megan M Member Posts: 3,000
    #10
    camul said:

    I didn't get the stage
    until after the scans and mastectomy. I knew it was positive after the ultrasound, they did a biopsy, but woke me in the middle and told me they couldn't get clear margins and scheduled the mastectomy that day for one week later. In that week, I had a pet scan, bone scan, saw a plastic surgeon. Then met with the surgeon two days after the mastectomy and she gave me information, and helped me find an oncologist. But it was not until they had all the info that I was given the stage, grade etc.

    Good luck, I would also make sure that she has another set of ears. I remember hearing so much then my mind would just shut down.

    Wish all of you the best.

    I got the stage and anything
    I got the stage and anything else I wanted to know after my lumpectomy in my pathology report. My oncologist and breast surgeon both went over it with me. I wanted to know everything as how can you fight what you don't know? Knowledge is power.


    Wishing your Aunt the best and I will put her in my prayers.


    Hugs, Megan
  • Rague
    Rague Member Posts: 3,653 Member
    #11
    laughs_a_lot said:

    A couple of things to consider.
    Now days with managed care most people do not get a chance to hear the results directly from thier doctor. They get a phone call and then schedule a visit to discuss what is known.

    Unfortunatlely until the tumor is removed through surgury and sent to pathology the doctors do not know what type of breast cancer they are fighting. There are about 5 or 6 different kinds and even then some of those with breast cancer have a combination of two or three diffent kinds in the same tumor.

    We know so much more than we did 25 years ago when my grandmother had breast cancer. Even though they knew less my grandmother survived breast cancer past the 10 year point. She got another cancer later (not related to the breast cancer) and lived to the ripe old age of 85. I'd say that these were pretty good odds considering this was 25 years ago when they knew less. I held on to these thoughts while getting my treatment and it carried me a long way.

    Biopsy
    Biopsy tells the type. If it didn't then there would not be different protocol for the TX of the different types - it would be a 'one size fits all', which it isn't. Some are TX"d first with chemo some with surgery. Cerainly more info is gotten from the post surgery path. than from the limited tissue in a biopsy but it will tell the type. Stage will show on post surgery path.

Discussion Boards