Bummed Out After Seeing New Onc

BlownAway60
BlownAway60 Member Posts: 851
edited March 2014 in Breast Cancer #1
Well I am really bummed. New onc seems to be great but it really hit me hard what she had to say. I will have to have more surgery to remove more lymph nodes. My original onc should have requested it right after my lumpectomy. Another mistake on his part that ends up costing me.

She changed my chemo to FEC100. Has anyone ever taken this? What can I expect for side effects? She said I will have 3 rounds of this chemo and then possibly the surgery. I don't know yet what will happen after that. She is holding off on the Herceptin until after she gets results from the FISH test she wants to rerun.

I am really hurt and upset that my original onc was doing such a poor job and I didn't even know it. I put my trust in him and I was so misled about a lot of things that really could have cost me my life.

Donna

Comments

  • Sher43009
    Sher43009 Member Posts: 602 Member
    Dear Donna
    I'm sorry you

    Dear Donna

    I'm sorry you have to have more surgery. I don't know anything about your new chemo. Did your oncologist give you any info on it? If not do a search on the ASC website.

    I can understand you being upset about your old oncologist but you listened to yourself and knew something wasn't right then took the steps to get another opinion. Through out this whole journey you have to listen to your body and if something doesn't feel right do something about it.

    Keep us posted.
  • ppurdin
    ppurdin Member Posts: 1,181
    Sorry to hear that.
    Sorry to hear your first dr. didn,t do a good job for you.I am glad you got another one though.It is not our place to know what they are doing.That is what they get paid for.hang in their.Sounds like you are in better hands now.Love and Prayers.(Pat).
  • Kat11
    Kat11 Member Posts: 1,931 Member
    Sorry
    So very sorry you have to go through this. I don't know about the type of chemo you are having. I had the AC/Taxol/Herceptin. Thank God that you are with another ONC now. Hugs
  • mizcaldwell
    mizcaldwell Member Posts: 143
    So Sorry
    I'm so sorry that things have gone as they have. I hope that things will go smoother with this new person - she seems on top of things. I googled FEC100 - and found out it is a cooker as well as a chemo regimen! Too bad we can't just use the cooker - and forget the chemo!!! I just saw two headlines - but they both seemed like the regimen was tolerated in the studies cited. I will keep you in my prayers and send positive vibes your way!

    Lori
  • Megan M
    Megan M Member Posts: 3,000
    Kat11 said:

    Sorry
    So very sorry you have to go through this. I don't know about the type of chemo you are having. I had the AC/Taxol/Herceptin. Thank God that you are with another ONC now. Hugs

    I am also so sorry that you
    I am also so sorry that you have to go thru more surgery. Sending you hugs!

    Megan
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    Donna, I know this isn't
    Donna, I know this isn't what you wanted to hear, but if it is a better treatment with better long-term results, then go for it! You were not comfortable with your previous doc and decided to do something about it. If you are comfortable with your new one, then go with this treatment. If you're not happy with her, then get a 3rd opinion. The most important thing now is YOU. You must feel comfortable with your doc and your treatment schedule. Your frame of mind plays into this, too. I'm sending you positive thoughts and hopes that you get on with your treatment and get than much closer to NED. Good luck, take care and keep us posted.
  • carkris
    carkris Member Posts: 4,553 Member
    MyTurnNow said:

    Donna, I know this isn't
    Donna, I know this isn't what you wanted to hear, but if it is a better treatment with better long-term results, then go for it! You were not comfortable with your previous doc and decided to do something about it. If you are comfortable with your new one, then go with this treatment. If you're not happy with her, then get a 3rd opinion. The most important thing now is YOU. You must feel comfortable with your doc and your treatment schedule. Your frame of mind plays into this, too. I'm sending you positive thoughts and hopes that you get on with your treatment and get than much closer to NED. Good luck, take care and keep us posted.

    Why do they need to remove
    Why do they need to remove more nodes, not enough the first time? Its hard to have starteda regime then have to change it all up. We are here.
  • shortscake
    shortscake Member Posts: 228
    on the right track
    sound like you are on the right track now sorry that you have to have more surgeries but if that is what is need to keep you here long do it and you know we all here with you every step of the way, everything will work out i know it will and i pray it will. girl power
  • BlownAway60
    BlownAway60 Member Posts: 851
    carkris said:

    Why do they need to remove
    Why do they need to remove more nodes, not enough the first time? Its hard to have starteda regime then have to change it all up. We are here.

    First Onc Misled Us
    He told us that there was a microscopic amount of cancer found in my sentiel lymph node, the only one that was removed during my lumpectomy. He said that he was satisfied with it and would not recommend removing more. If the Radiation Onc didn't like it she could just shoot me with a beam under my arm. My new onc told me yesterday that it was not microscopic and more lymph nodes should have been removed when I had my surgery and since they were not removed and tested then, that I will have to have more removed now. Does not seem fair to me, he misled us and I am the one facing another surgery.

    To all,
    Thanks for all the words of encouragement.

    Donna
  • natly15
    natly15 Member Posts: 1,941

    First Onc Misled Us
    He told us that there was a microscopic amount of cancer found in my sentiel lymph node, the only one that was removed during my lumpectomy. He said that he was satisfied with it and would not recommend removing more. If the Radiation Onc didn't like it she could just shoot me with a beam under my arm. My new onc told me yesterday that it was not microscopic and more lymph nodes should have been removed when I had my surgery and since they were not removed and tested then, that I will have to have more removed now. Does not seem fair to me, he misled us and I am the one facing another surgery.

    To all,
    Thanks for all the words of encouragement.

    Donna

    Donna i also had a 2nd
    Donna i also had a 2nd surgery. When I had the first surgery, the pathologist while I was still under, said there were no malignant cells in the sentinel lymph node.
    When I returned a week later for a follow up visit with the surgeon he told me they misdiagnosed and that there were malignant cells in the sentinel lymph node. I had the 2nd surgery after getting a 2nd opinion. Fortunately the other lymph nodes were clear, but the tumor however small was very aggressive so the onc recommended chemo and radiation. I 've had 5 infusions with 3 more to go and then rads.

    I say do whatever you can to fight this horrible disease. I realize now that I could have passed on the 2nd surgery, and just opted for the chemo which should irradicate anything that is or was there. I'm happy I had the rest of the lymph nodes removed because it confirmed to me that the cells had not invaded any of the other lymph nodes.

    After the surgeon told me I needed a 2nd surgery, I started doing all the necessary foot work and got/get all my treatment at a Research Hospital which came highly recommended by an oncologist friend and my PHP.

    Best wishes to you. I know how you feel, but it is really necessary to stay positive and do whatever you can to defeat this.
  • Jeanne D
    Jeanne D Member Posts: 1,867

    on the right track
    sound like you are on the right track now sorry that you have to have more surgeries but if that is what is need to keep you here long do it and you know we all here with you every step of the way, everything will work out i know it will and i pray it will. girl power

    Donna ♥
    I am glad that you are with a good oncologist now that will do what is needed to get you cancer free! I am very sorry that it will require more surgery. I know how disappointing and upsetting that must be. ( been there, done that ) Just know that we are all here to help you thru it. Sending you big hugs today!

    Love, Jeanne ♥</♥</font>
  • MAJW
    MAJW Member Posts: 2,510 Member

    First Onc Misled Us
    He told us that there was a microscopic amount of cancer found in my sentiel lymph node, the only one that was removed during my lumpectomy. He said that he was satisfied with it and would not recommend removing more. If the Radiation Onc didn't like it she could just shoot me with a beam under my arm. My new onc told me yesterday that it was not microscopic and more lymph nodes should have been removed when I had my surgery and since they were not removed and tested then, that I will have to have more removed now. Does not seem fair to me, he misled us and I am the one facing another surgery.

    To all,
    Thanks for all the words of encouragement.

    Donna

    So sorry....but
    Glad you have found an oncologist that you are happy with.........Did you see him BEFORE your original surgery? As far as removing more than one sentinel node, THAT was the surgeon's call.....not the oncologist... and the surgeon should have had the one tested right then for any evidence of cancer and then make the decision to remove more if one was postive....The surgeon is the one who makes the determination on how many nodes to remove, as a rule........I never even met with my oncologist until AFTER my surgery and the pathology report came back........that's when they determine a treatment plan.......unless you have to have chemo before a lumpectomy or mastectomy to reduce the size of the tumor......that's why I asked when you saw the oncologist, before or after the surgery......

    I wish you the very best!
  • BlownAway60
    BlownAway60 Member Posts: 851
    MAJW said:

    So sorry....but
    Glad you have found an oncologist that you are happy with.........Did you see him BEFORE your original surgery? As far as removing more than one sentinel node, THAT was the surgeon's call.....not the oncologist... and the surgeon should have had the one tested right then for any evidence of cancer and then make the decision to remove more if one was postive....The surgeon is the one who makes the determination on how many nodes to remove, as a rule........I never even met with my oncologist until AFTER my surgery and the pathology report came back........that's when they determine a treatment plan.......unless you have to have chemo before a lumpectomy or mastectomy to reduce the size of the tumor......that's why I asked when you saw the oncologist, before or after the surgery......

    I wish you the very best!

    Saw the Onc before surgery
    I saw my first onc before I had surgery. In fact the surgeon recomended him. The surgeon wanted me to have a team in place before he operated. Including a plastic surgeon if I needed one. During my followup with the surgeon he asked me if the onc wanted him to take more lymph nodes and I told him what the onc had told me "no" he was happy with what he had. Even when the radology onc suggested to my onc that more lymph nodes be taken he also told her "No" and that if she had concerns that she could just radiate that area. I do know that the surgeon thought he had actually taken 3 nodes but it turned out to be just the one. It may have been the surgeon's decision as to how many nodes were taken originally but it was the onc's decision not to go back and take more right after surgery.

    Donna
  • Aortus
    Aortus Member Posts: 967
    I can understand feeling bummed, but...
    You can also look at it this way: you asserted yourself by seeking a second opinion and made sure about getting yourself the best possible care. I'm not sure whether onc #1 really caused that much damage, but I'm positive that onc #2 is a big upgrade over her predecessor.

    Again, you did a brave thing and a smart thing. You should congratulate yourself!

    Joe
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    It's all very unfortunate...
    Yet, I hope you feel much more confident and comfortable with your 2nd doctor.

    Although I think I understand your frustration, confusion, maybe even anger...

    You have difficult things to deal with in your immediate future. So, let go - at least, for now. Try to focus on what's right in front of you - without looking backwards. The past cannot be revised. Please save your energy and strength for the battle ahead, you'll need it.

    Best wishes to you, Donna.

    Kind regards, Susan
  • BlownAway60
    BlownAway60 Member Posts: 851
    Thanks For all The Great Posts
    I have decided I am too old and have too many more important things going on in my life right now to let this stress me out. I am in a better place now and hopefully the new chemo will not stress my body out as much as the old one did. I am trying to think positively and hoping for the best. I did find out what composes the FEC 100, 5-Fluorouracil, Epirubicin and Cyclophosphamide. Have not heard anything about the Herceptin, whether I will have to take it or not. Which ever it is I will do what is best for me. This is a scarry road we are all on and there are times I would do almost anything not to be here. I can still remember having hair, taste buds and normal days but this is my reality right now. No matter how much I don't like it, I have to deal with it the best that I can, because I am a survivor and I will not let this d_mn disease defeat me.

    Donna
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    Hang in there
    Sorry to hear your former oncologist feel asleep at the wheel, sort of speak. But... at least you knew enough to leave and find yourself another doctor who will do right by you. Hang in there! One step at a time. Best of luck.
    BL
  • natly15
    natly15 Member Posts: 1,941

    Thanks For all The Great Posts
    I have decided I am too old and have too many more important things going on in my life right now to let this stress me out. I am in a better place now and hopefully the new chemo will not stress my body out as much as the old one did. I am trying to think positively and hoping for the best. I did find out what composes the FEC 100, 5-Fluorouracil, Epirubicin and Cyclophosphamide. Have not heard anything about the Herceptin, whether I will have to take it or not. Which ever it is I will do what is best for me. This is a scarry road we are all on and there are times I would do almost anything not to be here. I can still remember having hair, taste buds and normal days but this is my reality right now. No matter how much I don't like it, I have to deal with it the best that I can, because I am a survivor and I will not let this d_mn disease defeat me.

    Donna

    Donna I was so happy to read
    Donna I was so happy to read your post of Jan 13. We will all beat this d_mn disease, and we will do whatever it takes to be better, get better, and do better because we are Victorious Survivors even on those days when we feel like we've been to h-ll and back. You Go Girl!!!!