second opinion

labtech
labtech Member Posts: 37
edited March 2014 in Breast Cancer #1
hi everyone,

just in a mess, i went to see my oncologist last wednesday thinking i had ended my chemo and to my surprise the chemo nurse made a huge mistake and he told me i had 6-8 more treatments to go. i was so confused then to top it off i've been having numbness in my face and jaw thinking it was from the chemo. He rushes in and says i need a muga scan, and walks away without even explaining what that is. i have scheduled a second opinion and also has anyone heard of not having surgery before the chemo with stage 1 breast ca? he is telling me if they do enough chemo i will avoid surgery? won't it come back or spread when chemo stops? i am confused but hopefully someone can shed some light on this mess. thanks.

Comments

  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #2
    Additional Chemo
    Labtech, I am sorry to hear of the terrible visit you had Wednesday. I know myself very recently, as well as many of us over the years, how upsetting it is to be surprised with unhappy (to express it mildy) news. I never liked surprises before bc and definitely not now. And what an awful surprise to find more chemo ahead. I would be as upset as you.

    Unbelievable that the chemo nurse made this mistake. Along with the uncommunicative ocn, these two definitely scream get a second opinion. In fact, I would change teams if at all possible.

    I have heard of chemo before surgery to shrink the tumor(s). It is called neo-adjuvant therapy and is becoming more common. It was offered to me, but my tumor was large and I wanted it out right away. Several women here have had chemo before surgery or are preparing for it. You will hear from them also, I am sure.

    As far as numbness, I did have it in my legs and feet at the end of 6 rounds of TAC. I don't know anything about numbness in the face and jaw area, but it is a good idea to have your heart checked just in case.

    I had a MUGA before treatment started. It is the easiest test you will have. You basically lie done on a table and breathe while a flat panel placed close and above you transfers photos. All you have to do is breathe and try not to be too bored. The test is to check the pumping of your heart.

    Like I said, it is good that your onc. ordered the test even as a precaution. If you have any other symptoms, though, I would report them ASAP.

    Good luck to you, Labtech. I recall your earlier post and wondered how you were doing. This cancer journey has its ups and downs, some terrifying. But you are not alone, as I find over and over again. You have come to the right place for support and understanding and caring.
  • labtech
    labtech Member Posts: 37
    #3
    Moopy23 said:

    Additional Chemo
    Labtech, I am sorry to hear of the terrible visit you had Wednesday. I know myself very recently, as well as many of us over the years, how upsetting it is to be surprised with unhappy (to express it mildy) news. I never liked surprises before bc and definitely not now. And what an awful surprise to find more chemo ahead. I would be as upset as you.

    Unbelievable that the chemo nurse made this mistake. Along with the uncommunicative ocn, these two definitely scream get a second opinion. In fact, I would change teams if at all possible.

    I have heard of chemo before surgery to shrink the tumor(s). It is called neo-adjuvant therapy and is becoming more common. It was offered to me, but my tumor was large and I wanted it out right away. Several women here have had chemo before surgery or are preparing for it. You will hear from them also, I am sure.

    As far as numbness, I did have it in my legs and feet at the end of 6 rounds of TAC. I don't know anything about numbness in the face and jaw area, but it is a good idea to have your heart checked just in case.

    I had a MUGA before treatment started. It is the easiest test you will have. You basically lie done on a table and breathe while a flat panel placed close and above you transfers photos. All you have to do is breathe and try not to be too bored. The test is to check the pumping of your heart.

    Like I said, it is good that your onc. ordered the test even as a precaution. If you have any other symptoms, though, I would report them ASAP.

    Good luck to you, Labtech. I recall your earlier post and wondered how you were doing. This cancer journey has its ups and downs, some terrifying. But you are not alone, as I find over and over again. You have come to the right place for support and understanding and caring.

    thank you.
    Moopy, first may i say you are so pretty i wish i had your hair!!! mine is still falling out. ahahahha. yes, i will get a second opinion and i feel better already. i have faith in god and i know all will work out.
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #4
    labtech said:

    thank you.
    Moopy, first may i say you are so pretty i wish i had your hair!!! mine is still falling out. ahahahha. yes, i will get a second opinion and i feel better already. i have faith in god and i know all will work out.

    Me, Too
    Now I thank you for the compliments!

    I wish I had my hair, too. This was a pre-chemo photo. My hair is growing back, though, and so will yours. Even before the last chemo treatment, I was getting bristly. Now my hubby says I am a little hedgehog. So don't worry: we will be Hair on Head Girls again.

    By the way, if you would like info on hair coming out, there are several good threads. One dates back to January or February;others are more recent. You can use the Search feature on the upper right of the Discussion Topic page.

    Or just ask: hair is a popular topic, or lament, however you want to put it.

    I am glad you feel better. Things will work out, just as you said.
  • ladybug22
    ladybug22 Member Posts: 646
    #5
    so confused
    I had chemo befor surgery . I had a muga test every 3 mons. becaues of the chemo i was on. good luck with second opinion they are always good i am sending you a hug
  • labtech
    labtech Member Posts: 37
    #6
    ladybug22 said:

    so confused
    I had chemo befor surgery . I had a muga test every 3 mons. becaues of the chemo i was on. good luck with second opinion they are always good i am sending you a hug

    thank you so much.
    i appreciate all the good words because im not sure what is what just about now. i know it will work out somehow. you always think without surgery the tumors will come back. i just don't know. my surgeon is on leave due to her husband passing away and im not comfortable with anyone else so i fee very alone.
  • seof
    seof Member Posts: 819 Member
    #7
    second opinion
    A second opinion is always a good idea if you are the least unsure. I think I would be looking for a team that would take more time to be careful and explain things. I had chemo before surgery because the oncologist said that way we could know for certain whether the drugs are working on the cancer, or if we need to try another mix. If the tumor is removed before chemo it is more difficult to be certain whether the drugs are working for your specific body. In my case we did chemo, surgery, more chemo to get anything that might be left that did not show up on the exams. My advise to you is to write down any and all questions, go get a second opinion (or 3rd, or 4th). It is your life and you should be able to feel confident with the medical team you are working with. In the end it is your decision and you will do what is best for YOU.

    Best wishes, seof
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    #8
    labtech said:

    thank you.
    Moopy, first may i say you are so pretty i wish i had your hair!!! mine is still falling out. ahahahha. yes, i will get a second opinion and i feel better already. i have faith in god and i know all will work out.

    I have faith
    in God too and that's a huge partly how I am making it through! And you have found a great place in this discussion group! You can be yourself here,and it's full of people who have either gone through it or are going through the ride-all ready with a listening ear or to give good advice!
    Yes,it's good to get a second opinion-especially if you're not comfortable with who you've got because you are going to be seeing them on a regular basis-and they do have your life in their hands!
    You will make it through this-taking baby steps helps! I know for me it was one step at a time,if you look at the big picture it's going to overwhelm you and scare you!
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #9
    Sounds like he thinks if he
    Sounds like he thinks if he blows enough chemo at it you might be able to save your breast.
    I think that's dangerous thinking personally. They probably would watch the tumour shrink as you're doing the chemo but the problem with that is you can still have undetectable cancer cells left as the equipment is only so sensitive. I wouldn't want to depend on the chemo alone to get everything. I definitely would get a second opinion. At stage 1 (nodes??) you may be able to avoid chemo altogether depending on your node status. Perhaps if you mention the area you live in someone here can recommend a good cancer tx centre. Good luck to you and sorry you've had to go through this confusion.
    hugs
    jan
  • rjjj
    rjjj Member Posts: 1,822 Member
    #10
    oh it burns my ****!
    If these people who don't take time to explain our treatment options and then don't even give us correct info or get it right!! If they had to do this they might not take it so casually. It is a tragedy that they are so careless with reports also. I would get a 2nd opinion for sure. I wish you all the best! please let us know.
    love and prayers
    Jackie
  • rjjj
    rjjj Member Posts: 1,822 Member
    #11
    Moopy23 said:

    Me, Too
    Now I thank you for the compliments!

    I wish I had my hair, too. This was a pre-chemo photo. My hair is growing back, though, and so will yours. Even before the last chemo treatment, I was getting bristly. Now my hubby says I am a little hedgehog. So don't worry: we will be Hair on Head Girls again.

    By the way, if you would like info on hair coming out, there are several good threads. One dates back to January or February;others are more recent. You can use the Search feature on the upper right of the Discussion Topic page.

    Or just ask: hair is a popular topic, or lament, however you want to put it.

    I am glad you feel better. Things will work out, just as you said.

    Hedgehog huh?
    I thought mine looks like a porkepine sticking straight up!! lol
    jackie
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    #12
    rjjj said:

    Hedgehog huh?
    I thought mine looks like a porkepine sticking straight up!! lol
    jackie

    A tip
    I was just thinking,I've got a tip for you guys that one of my bc friends shared with me when my hair fell out.
    She told me to take a lint ball roller to my head and it honestly does take out any loose stubs that you have!
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #13
    outdoorgirl said:

    A tip
    I was just thinking,I've got a tip for you guys that one of my bc friends shared with me when my hair fell out.
    She told me to take a lint ball roller to my head and it honestly does take out any loose stubs that you have!

    Lint Ball Roller
    Thanks for this tip, Patty. I have one here and will try it. I am sure Porcupine Girl will also.
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #14
    I hate to say this, but,
    I hate to say this, but, what you wrote makes no sense, at least to me. Why chemo with stage 1 bc? And, you haven't had surgery yet? Surgery and your pathology report determine your treatment options. Unless you have a large tumor and they are trying to shrink it..is that the case? Do they know that your lymph nodes aren't clean? You need a second opinion for sure. After all, this is your life we are talking about. I would fire the healthcare you have now.
  • labtech
    labtech Member Posts: 37
    #15
    Kristin N said:

    I hate to say this, but,
    I hate to say this, but, what you wrote makes no sense, at least to me. Why chemo with stage 1 bc? And, you haven't had surgery yet? Surgery and your pathology report determine your treatment options. Unless you have a large tumor and they are trying to shrink it..is that the case? Do they know that your lymph nodes aren't clean? You need a second opinion for sure. After all, this is your life we are talking about. I would fire the healthcare you have now.

    My lymphs are clear from
    My lymphs are clear from what they say, the tumors (2) are 1cm in size and im not sure what they are doing and will be seeing a new doc this wk.
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #16
    labtech said:

    My lymphs are clear from
    My lymphs are clear from what they say, the tumors (2) are 1cm in size and im not sure what they are doing and will be seeing a new doc this wk.

    How do they know your lymph
    How do they know your lymph nodes are clear without surgery? I don't understand that. And, they can't know the exact size of a tumor without surgery either, can they? And, I was under the impression that a 1cm tumor is small and wouldn't require chemo, unless your nodes or margins aren't clean. I don't know...I wish you the best of luck! Good luck with the new doctor, and, if he or she doesn't give you the right answers, get another doctor.
  • Eil4186
    Eil4186 Member Posts: 949
    #17
    I would definitely get a
    I would definitely get a second opinion. The only situation I have heard where chemo is not given is when the tumor is less than 1cm.
  • lemont
    lemont Member Posts: 10
    #18
    Eil4186 said:

    I would definitely get a
    I would definitely get a second opinion. The only situation I have heard where chemo is not given is when the tumor is less than 1cm.

    My bc was stage 1 too and
    My bc was stage 1 too and I've had four surgeries (2 lumpectomies, bilat mast, revision to bilat mast), 4 rounds TC chemo, and now on Arimidex. So the treatment can vary a lot even for stage 1.

    You may or may not need chemo with stage 1 bc. The OncotypeDX test can be used to help make that decision. My recurrence score was high so it was clear that I would benefit from chemo. The results aren't always that clear, but I found the test to be useful (if your insurance will cover it).

    I, too, hope you can find a team that's more responsive and communicative. I put up with "small" issues with both my surgeon and oncologist until I finally changed to a entirely new team in January. I wish I had done it sooner.
  • mmontero38
    mmontero38 Member Posts: 1,510
    #19
    outdoorgirl said:

    A tip
    I was just thinking,I've got a tip for you guys that one of my bc friends shared with me when my hair fell out.
    She told me to take a lint ball roller to my head and it honestly does take out any loose stubs that you have!

    Someone had posted about
    Someone had posted about using duct tape. I thought that was hilarious, but she said it worked. Go figure, if men can use duct tape to fix everything why can't we? LOL
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #20
    rjjj said:

    oh it burns my ****!
    If these people who don't take time to explain our treatment options and then don't even give us correct info or get it right!! If they had to do this they might not take it so casually. It is a tragedy that they are so careless with reports also. I would get a 2nd opinion for sure. I wish you all the best! please let us know.
    love and prayers
    Jackie

    Careless
    You are exactly right, Jackie. I remember the error with your path report, and of course, my pet scan more recently. I say most oncs and pathologists would benefit from having one round of chemo.
  • RE
    RE Member Posts: 4,591 Member
    #21
    Chemo b4 surgery
    Hi Tech,

    The first time I had bc I had surgery then 6 rounds of chemo and rads, the second time I was a stage 4 when a lump 3 cm showed up on my chest. The surgeon and the oncologist both agreed that I should have chemo first to shrink the tumor. I was beside myself because it had spread to my chest wall and sentinel node and I wanted it removed. It was explained to me that by using the tumor as a marker they would be able to determine if the chemo was working or if they needed to change the chemo or increase the strength. To all of our amazement after the first round of chemo the mass was destroyed. I had to continue to take chemo and radiation to ensure as best as possible that the cancer had been stopped. I ended up not having to have surgery the second time which was a plus, that was 11 years ago. I wish you well!

    RE

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