Newbie here - How to tell young children

pitt
pitt Member Posts: 387
edited March 2014 in Breast Cancer #1
Can anyone give me some advice about how to talk to my young daughters about this? I was just diagnosed with Stage I invasive ductal breast cancer. My 10 year old knows something is up. Our good friend went through chemo for this last year and now my daughter is scared that I am going to lose my hair. Any advice?

As for me, I'm 38 and went for a routine mammogram in June. I wasn't even going to go since I'm not 40 and the ACS doesn't recommend until we reach 40. I decided to go at the last minute and then was told to come back for a diagnostic mammogram. After that, a stereotactic biopsy, which was awful. I bled for a week and a HUGE hematoma formed at the insertion sight. Since then, I have had an excisional biopsy which showed that I have Stage I invasive ductal breast cancer. It is estrogen receptive, thank god. I am still waiting for the HER2 results. They are going to test me for the BRAC gene. I had an MRI as well but won't get the results until Monday. The area is only 0.9cm so if the HER2 adn MRI come back with good news then my surgeon suggests lumpectomy with radiation. If not, then mastectomy and chemo.

Here's a question: does anyone know what the recurrence % is for women who have a lumpectomy vs. mastectomy. I know survival is the same...but what about recurrence?

Anyway, glad to have found this website. Still trying to figure it all out. Any advice is greatly appreciated.

Comments

  • Noel
    Noel Member Posts: 3,095 Member
    #2
    Hi Pitt and Welcome ☻
    I don't have any children yet Pitt, so, I haven't had to do that. But, it seems to me and from what I have read, it is always best to be open and honest with them. Put them on "your team". Make them a part of it. It won't seem so scary then. There are several good postings on here about what parents told their kids at different ages. I will try and bump them up for you to read. Chenheart, Claudia on here, wrote something really good as to how she explained the loss of her hair to her niece. I hope I can find that for you. If not, maybe you could private message her. Good luck on that!

    I had a lumpectomy followed by radiation. And, the recurrence rate, from what I know is the same as if I would have had a mastectomy. ( which i didn't need ) If you don't have the rads with a lumpectomy, then I am sure there is a difference, but, not if you have rads too.

    Hope to see you posting more! And, ask anything. We all will help you thru this journey!

    ♠♥ Noel ♠♥
  • pitt
    pitt Member Posts: 387
    #3
    Noel said:

    Hi Pitt and Welcome ☻
    I don't have any children yet Pitt, so, I haven't had to do that. But, it seems to me and from what I have read, it is always best to be open and honest with them. Put them on "your team". Make them a part of it. It won't seem so scary then. There are several good postings on here about what parents told their kids at different ages. I will try and bump them up for you to read. Chenheart, Claudia on here, wrote something really good as to how she explained the loss of her hair to her niece. I hope I can find that for you. If not, maybe you could private message her. Good luck on that!

    I had a lumpectomy followed by radiation. And, the recurrence rate, from what I know is the same as if I would have had a mastectomy. ( which i didn't need ) If you don't have the rads with a lumpectomy, then I am sure there is a difference, but, not if you have rads too.

    Hope to see you posting more! And, ask anything. We all will help you thru this journey!

    ♠♥ Noel ♠♥

    thanks
    Thanks Noel. I appreciate your help!!! I'm still trying to figure out how to do things on this site. It's actually a good distraction. You were so kind to repost the advice on talking to children. Thank you! That really helped. I finally stopped crying and am going to try and enjoy the rest of the weekend. Thank you SO MUCH for your help!!! Liz
  • mizv
    mizv Member Posts: 9
    #4
    I am a newbie here too.
    I am a newbie here too. Today is my first time to get on here and post about my cancer. I've had trouble getting past the denial phase and haven't really talked to anyone except my husband.

    Anyway, I am a whole lot older than you, but I do have close granddaughters who are 15 and 17. At first they were really scared and cried, especially the younger one. But I have been very open about the fact that someday I am going to die, whether from cancer or from something else and will not spend all their lives with them. We are a religious family, so I took her to the book of 1 Thess. where it talks about the dead meeting the alive in the air when the Lord returns and that helped her a lot.

    Then we got to giggling about going out on a "girl date" so we could have lunch and then go pick out my new boob and bra. (I did wind up having to have a mastectomy because the tumor spread back under the nipple and have had my first chemo treatment.) With time, I think they are accepting it. I'm not sure about their mothers, though - they won't talk to me in depth about it. You didn't say how old your youngest child is. There was a lot of good advice on another post that I just read about how to get help for children.
  • Kylez
    Kylez Member Posts: 3,761 Member
    #5
    pitt said:

    thanks
    Thanks Noel. I appreciate your help!!! I'm still trying to figure out how to do things on this site. It's actually a good distraction. You were so kind to repost the advice on talking to children. Thank you! That really helped. I finally stopped crying and am going to try and enjoy the rest of the weekend. Thank you SO MUCH for your help!!! Liz

    Hi Pitt! Glad you found
    Hi Pitt! Glad you found some help on here. Good to meet you and hope you post lots more. Just ask anything pitt and we will try and help you. We are all sisters here!

    Kylez ♥
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #6
    mizv said:

    I am a newbie here too.
    I am a newbie here too. Today is my first time to get on here and post about my cancer. I've had trouble getting past the denial phase and haven't really talked to anyone except my husband.

    Anyway, I am a whole lot older than you, but I do have close granddaughters who are 15 and 17. At first they were really scared and cried, especially the younger one. But I have been very open about the fact that someday I am going to die, whether from cancer or from something else and will not spend all their lives with them. We are a religious family, so I took her to the book of 1 Thess. where it talks about the dead meeting the alive in the air when the Lord returns and that helped her a lot.

    Then we got to giggling about going out on a "girl date" so we could have lunch and then go pick out my new boob and bra. (I did wind up having to have a mastectomy because the tumor spread back under the nipple and have had my first chemo treatment.) With time, I think they are accepting it. I'm not sure about their mothers, though - they won't talk to me in depth about it. You didn't say how old your youngest child is. There was a lot of good advice on another post that I just read about how to get help for children.

    Welcome, Liz
    I just wanted to welcome you, and let you know that my journey so far has been similar to yours: I'm 40, went in for my very first baseline mammogram, and also had a stereotactic biopsy that was awful (for a lot of women, it's not a big deal).

    I was also diagnosed with Stage 1 invasive cancer. My tumors were all very small, 0.2 cm. I'm ER+/PR+/HER2-, and was also tested for the BRCA gene, which came back negative. I had bilateral lumpectomies, and chemo was optional for me, because I had no lymph node involvement, but I chose to do it, because I'm so far away from menopause, and I couldn't live with myself years down the road if it came back and I was left thinking, what if I'd done chemo? I'm in the middle of chemo now, and will do radiation afterwards.

    If you haven't met with an oncologist yet, I would suggest involving one as early in this process as possible -- even though he/she can't definitively decide on a course of treatment until after surgery, I found it very helpful to have the input of both a surgeon and oncologist from the beginning. My oncologist was the one who could really discuss how being pre-menopausal affects recurrence rates, chemo vs. hormone therapy, etc.

    I don't have children, but other ladies here have posted really great advice on that issue -- I'm sure they'll post soon.

    Traci
  • susan marie
    susan marie Member Posts: 6
    #7
    lumpectomy vs. mastectomy
    Hi, My name is Susan and also a newbie. Just got the diagnosis on Thursday with interductal carcanoma her2 pos .Have you had the surgery yet? I was told they couldn't stage the cancer until that was done.
    You asked about the reoccurance % of lump vs. mast.
    I was told by my Dr. that the lump. is 8% chance vs. mast. @ 5%. Only a 3 % differance but that was enough for me. I will find out Friday when I will have the "girls" removed and what stage it is and weather it has spread to the lymphnodes.
    Best of luck to you and your family and hope to hear how things are going for you.
    susan
  • aztec45
    aztec45 Member Posts: 757
    #8
    Welcome
    Welcome to Pitt and Susan. This site is made up of some of the most incredible women (and men) you will ever encounter. They (we) are here to help.

    I don't have any kids but I think the advice given has been good. It is always best to be open and honest and enlist their help.

    Keep us posted on your progress.

    Pat
  • KathiM
    KathiM Member Posts: 8,028 Member
    #9
    I found it....
    and bumped it...great to meet you, although it's NOT great the reason!

    Hugs, Kathi
  • lolad
    lolad Member Posts: 670
    #10
    KathiM said:

    I found it....
    and bumped it...great to meet you, although it's NOT great the reason!

    Hugs, Kathi

    I want to welcome
    all the new ones to the board. You will find it a wonderful, comforting site with lots of possitive advice and even laughs and tears at times. I posted a question on my children before and recieved great advice and it was so helpful. It always is helpful coming here. There have been times when i have been so down and dont even want to get on and post. But, i sometimes make myself and feel so much better when i do. My children are 15,13 and 11 and guiding them through all this is very hard, especially for my youngest who is a girl. But we have hung in there together and with all the advice ive gotten from here and support it has helped so much. Hang in there and keep coming aboard. I will pray for all of you. Take care.

    laura
  • Noel
    Noel Member Posts: 3,095 Member
    #11
    pitt said:

    thanks
    Thanks Noel. I appreciate your help!!! I'm still trying to figure out how to do things on this site. It's actually a good distraction. You were so kind to repost the advice on talking to children. Thank you! That really helped. I finally stopped crying and am going to try and enjoy the rest of the weekend. Thank you SO MUCH for your help!!! Liz

    Liz
    You are more than welcome. It made me feel good that I could help you out. I knew that thread had a lot of good advice. Hope you had a great weekend after your cry! You hang in there. We will all be here to help you anytime you need it!

    ♥ Noel
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #12
    lolad said:

    I want to welcome
    all the new ones to the board. You will find it a wonderful, comforting site with lots of possitive advice and even laughs and tears at times. I posted a question on my children before and recieved great advice and it was so helpful. It always is helpful coming here. There have been times when i have been so down and dont even want to get on and post. But, i sometimes make myself and feel so much better when i do. My children are 15,13 and 11 and guiding them through all this is very hard, especially for my youngest who is a girl. But we have hung in there together and with all the advice ive gotten from here and support it has helped so much. Hang in there and keep coming aboard. I will pray for all of you. Take care.

    laura

    Welcome to...
    Liz/pitt, mizv and Susan/susan marie. Glad you found us, though sorry for the reason.

    Note to Liz: Only your medical oncologist can specifically answer your question about recurrence. It varies by individual diagnosis, many factors.

    Please feel free to visit often, whenever you need or would like to. You're amongst survivors here.

    Best wishes to all three of you.

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