curious

pinkflutterby
pinkflutterby Member Posts: 615 Member
edited March 2014 in Breast Cancer #1
I have been reading posts here and its seems most have lost at least one of their "girls". I have stage IV breast cancer that has spread to my liver and spine. My onc doc says I may not need surgery at all that my tumor markers are so good that after chemo and MORE radiation I will take tomixofin (sp??) now I am curious is she not doing the surgery because it wont prolong my life? Should I start making plans for my 8 yr old daughter??? I have read that only 20% live 5 yrs after diagnosis with stage IV I have been planning on beating that 20% but now Im worried................... My 8 yr old's dad is a bum cant keep a job and has had 4 DWI's so him raising her is not an option. My mom and step dad are too set in their ways to raise an 8 yr old -- guess Im having a bad day.... what do ya'll think????

depressed, Libby

Comments

  • CR1954
    CR1954 Member Posts: 1,390 Member
    #2
    Libby.......
    I had a mastectomy because my tumor was quite large and near the surface, causing me a lot of pain. I also had several lymph nodes that were involved.

    My cancer was also HER-2+. So the HER protein was being overly expressed and "feeding" the actual tumor. In my case, I really had no choice but to remove tumor and breast.

    I also did 4 rounds of A/C chemo and 4 rounds of Abraxane (cousin to Taxol) and Herceptin. I am now having Herceptin every 3 weeks for a year (because of my HER-2+ status).

    I then had 28 rounds of rads.

    I'm sure that your docs are doing the right thing for your individual case. However, if you are unsure and uncomfortable about what your surgeon is doing, please don't hesitate to get a second opinion.

    Hugs,

    CR
  • dyaneb123
    dyaneb123 Member Posts: 950
    #3
    I think it's time for a 2nd
    I think it's time for a 2nd opinion. Maybe ask these questions directly to the ONC. first but, if you don't get a straight answer,get a 2nd opinion. I would want to know too.But there is always the possibility that they need to shrink the tumors first before any surgery.But this is something you should know. You should be included in every step of your treatment and understand exatly why the Doc. does or does not feel surgery is necessary.Anyway, don't assume the worst. There are a lot of stage IV survivors on this board and I'm sure you'll be hearing from them.
    Dee
  • The1percen
    The1percen Member Posts: 135
    #4
    Libby... so sorry for that DX
    If have read many posts, you know I am "new" at this too, with out even a dx myself, I will find out on the 30th what is going, this much I can tell you, if it is, then I will be in the same boat as you... I HAVE been "around" long enough that I would certainly get a 2nd opinion and ASK QUESTIONS!!! The "major' sites all have lists of questions to ask your doctors. There is no sense in worrying about it due to lack of information! I hope it works out for you and please let us know what is going on. The people on this board are the salt of the earth and if there is any thing they can tell you, all you have to do is ASK! Also they are excellent listeners (I HOPE I AM INCLUDED) so feel free to vent, dump or whatever. Good luck, I sure hope it works out for you!
    Take Care & God Bless,
    Mike
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    #5
    The1percen said:

    Libby... so sorry for that DX
    If have read many posts, you know I am "new" at this too, with out even a dx myself, I will find out on the 30th what is going, this much I can tell you, if it is, then I will be in the same boat as you... I HAVE been "around" long enough that I would certainly get a 2nd opinion and ASK QUESTIONS!!! The "major' sites all have lists of questions to ask your doctors. There is no sense in worrying about it due to lack of information! I hope it works out for you and please let us know what is going on. The people on this board are the salt of the earth and if there is any thing they can tell you, all you have to do is ASK! Also they are excellent listeners (I HOPE I AM INCLUDED) so feel free to vent, dump or whatever. Good luck, I sure hope it works out for you!
    Take Care & God Bless,
    Mike

    Mike
    You've been wonderful on here!You sound like a really nice person.
  • ladybug22
    ladybug22 Member Posts: 646
    #6
    I would ask onc just like
    I would ask onc just like you ask us.wish i could help more. i took chemo first then surgery then rads then herceptin every 3 week for a year. good luck
  • dmc_emmy
    dmc_emmy Member Posts: 549
    #7
    Libby-definitely get a 2nd opinion
    You need to feel confidemt that your drs are doing everything possible to fight your bc. If you're not confident in their treatment plan, then it's time to get another opinion.

    I know it's tough, but try not to think the worse scenerio. You, understanably, are concerned about your daughter's welfare. A year before I was dx, even though my daughter was older than yours, I made sure that my Will had language specific to my daughter's care, if anything should happen to me prior to her living independently. I also made sure that she was the sole beneficiary of some of my financial assets, not because I was thinking a "doomsday" scenerio, but because I was just being prepared. If you're able, it may want to consult with an attorney (they may even give a free consult over the phone).

    In the meantime, get a 2nd opinion, and if you're not satisfied with your current care, you have the right to change drs.

    I'll be praying for you and your little one,
    dmc
  • RE
    RE Member Posts: 4,591 Member
    #8
    Hope always Hope
    Hello Libby I truly am sorry you are having to deal with this. I read your post and wanted to tell you I am in that 20% and you can be too! I was stage 4 in 98 with mets to chest wall and sentinel node. My first bout with cancer I had a lumpectomy because it was near the surface and it was easy to remove with little damage to the breast. When it came back I had the second breast totally removed, I figured why keep it when it is trying to kill me. It is a personal choice, however if you are not comfortable with the treatment you are getting you should get a second opinion and you should ask your doctor why he or she is not suggesting a lumpectomy or mastectomy. I wish you and your daughter the best, please keep us updated we are here for you.

    RE
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #9
    If you don't agree or doubt
    If you don't agree or doubt your doctor's choices, you should probably get a 2nd opinion. It certainly couldn't hurt and might ease your mind. Good luck Libby!
  • creampuff91344
    creampuff91344 Member Posts: 988
    #10
    DianeBC said:

    If you don't agree or doubt
    If you don't agree or doubt your doctor's choices, you should probably get a 2nd opinion. It certainly couldn't hurt and might ease your mind. Good luck Libby!

    Definitely seek a second
    Definitely seek a second opinion if it were me. I would ask your current oncologist to explain in more detail the reasons he is advising no surgery, just tamoxifen, and if his answer doesn't make you feel better, then get out and find another oncologist. There are lots of doctors opinions out there, and you need to find the one who is best for you. When I was diagnosed, my oncologist suggested chemo/rads immediately after surgery. He did say that if I wanted to look further and seek another opinion, I could probably find a doctor who would NOT recommend chemo, but he felt it was something he would advise his sister or mother to do. That was my convincing statement. You need to decide if you are okay with no surgery, and if doubts are there, seek additional opinions. Good luck, Libby. Hugs.

    Judy
  • Marcia527
    Marcia527 Member Posts: 2,729
    #11
    Everyone else has answered
    Everyone else has answered your health problem question so I'll tell you about the other. When my kids were young I was concerned about who would raise them if something happened to both me and my husband. We were about to fly somewhere and if the plane crashed, they'd need someone. I wasn't being morbid but I like to plan. So we looked around and picked the best person to raise them and asked her if she was willing. Then drew up a paper with our wishes. Now if there was going to be someone to protest, I might have asked a lawyer to draw it up but I knew this would not happen. As it was, we didn't need the paper. After the kids were old enough to take care of themselves, we destroyed it. This was someone we trusted completely. We just did it as a precaution for while the kids were young.

    OH, someone else did answer you. Oh well.
  • cwestbro
    cwestbro Member Posts: 15
    #12
    I also have breast
    I also have breast cancer...although mine was contained. My heart goes out to you! I think it would be wise to get a second opinion ... and your dr. will understand. It will, if nothing else, ease your mind and give you more information. Talk someone with you always to the dr. to help you think of and to ask questions and take a list of questions with you. Sometimes it's hard to take charge of your illness when your in the middle of it...but you need to have a complete understanding so that you can make the decisions that you need to make. Continue to reach out for support , with your family, friends, and any local support groups you can find, they are amazing and will give you lots of comfort and direction. Also, they will give you info on talking with your child and there are even wonderful books you can get to read to your child to help them understand your illness. I wish I could do more...I would even be happy to go to the dr. with you if I could. Here's wishing you well and sending you lots of prayers, comfort and strength!

    ~cher
  • cats_toy
    cats_toy Member Posts: 1,462 Member
    #13
    Libby
    I can only say what Marcia said, everyone has given you great advise so far. Every person is different in their recovery and survival, so don't let percentages rule your life. Let us know how it goes.
    =^..^=
  • jnl
    jnl Member Posts: 3,869 Member
    #14
    cats_toy said:

    Libby
    I can only say what Marcia said, everyone has given you great advise so far. Every person is different in their recovery and survival, so don't let percentages rule your life. Let us know how it goes.
    =^..^=

    Libby, there are several
    Libby, there are several stage 4's on here, and, they are doing fine. So, don't go by the percentages. Good luck!
  • The1percen
    The1percen Member Posts: 135
    #15
    outdoorgirl said:

    Mike
    You've been wonderful on here!You sound like a really nice person.

    THANK YOU
    I have been trying to decide just how to answer this, I am usually humbled by compliments and kind of tend to "ignore" them. I appreciate that I am "liked" here... I am usually a loner and have very few "close" friends. I can be very vocal and this seems to turn some people off! I like to think of MYSELF as Friendly and NICE... and for the most part on the "ouside" (outside of this board) those traits are looked at as weakness and "uncool". It seems to me that the people in here FRIENDLY, NICE, COMPASSIONATE, HONEST and supportive. I thank ALL of you for that and as I have said... I have felt like I "belong" here. Thanks again!
    Take Care & God Bless,
    Mike
  • pinkflutterby
    pinkflutterby Member Posts: 615 Member
    #16
    jnl said:

    Libby, there are several
    Libby, there are several stage 4's on here, and, they are doing fine. So, don't go by the percentages. Good luck!

    Thanks
    Thanks for all the responses. I will talk to my onc next time I see her. :) feeling a little better today. I must of been having a bad day yesterday.

    Libby
  • aurora2009
    aurora2009 Member Posts: 544 Member
    #17
    pinkflutterby said:

    Thanks
    Thanks for all the responses. I will talk to my onc next time I see her. :) feeling a little better today. I must of been having a bad day yesterday.

    Libby

    Get a 2nd opinion
    Hi Libby I really don't have anthing to add, I think everyone here has said it all.
    Get a second opinion, make a plan for your daughter but above all else, stay positive. You can get through this and we're all here to support you. Glad to hear you feeling better, my heart really goes out to you, it's a stressful time, so make sure you talk to you doctors and let them know how you're feeling, you have a right to answers.

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