Questions about lymph nodes and lymphedema the second time around

Grains
Grains Member Posts: 27
edited March 2014 in Breast Cancer #1
Hi,
I have infiltrating ductal carcinoma for the second time. The first time it was in my right breast. I had a mastectomy and they took 15 of my lymph nodes. As a result I have mild lymphodema in my right arm. It isn't bad, but sometimes I have to wear my sleeve and my arm aches a lot. I have just been diagonsed in my left breast. I will have a mastectomy on my left breast and they will take my lymph nodes. So, what do I do about blood pressure, blood draws, etc in the future. I am kind of concerned about this. I asked my surgeon about the sentinel node. He said he could do it, but if it was positive, I would have to have another operation for him to take more lymph nodes. I don't want another operation, so I told him to take what he needs to. Anyone have any info for me. Thanks.

Comments

  • lovelylola
    lovelylola Member Posts: 279
    #2
    Grains
    First, welcome to this sorority you didn't want to pledge. It is a great sisterhood of help, support, broad shoulders, HUMOR (yes Margo and others) with a wealth of knowledge. Sometimes I think more than some of the health care "professionals" we see.
    I don't understand why he indicated that you would need another surgery. I thought the sentinel node biopsy, done during the mastectomy was sent to pathology immediately along with a couple nearby nodes and it was evaluated while you were on the operating table and then they would know whether or not to take more. I had it done that way and had given permission for them to take whatever they needed if the sentinel node came back positive. I thought that was the purpose of the sentinel node biopsy. So you didn't have to go back a second time. Am I mistaken? I didn't have to have anything else taken because mine was negative but any sisters out there got other ideas or have been told the same? Good luck with this and I hope there are other sisters that can respond. Lola
  • Grains
    Grains Member Posts: 27
    #3
    lovelylola said:

    Grains
    First, welcome to this sorority you didn't want to pledge. It is a great sisterhood of help, support, broad shoulders, HUMOR (yes Margo and others) with a wealth of knowledge. Sometimes I think more than some of the health care "professionals" we see.
    I don't understand why he indicated that you would need another surgery. I thought the sentinel node biopsy, done during the mastectomy was sent to pathology immediately along with a couple nearby nodes and it was evaluated while you were on the operating table and then they would know whether or not to take more. I had it done that way and had given permission for them to take whatever they needed if the sentinel node came back positive. I thought that was the purpose of the sentinel node biopsy. So you didn't have to go back a second time. Am I mistaken? I didn't have to have anything else taken because mine was negative but any sisters out there got other ideas or have been told the same? Good luck with this and I hope there are other sisters that can respond. Lola

    I am not really sure. At
    I am not really sure. At first he said yes, he could do the sentinel node, with the understanding that he would take more if needed. Then he said I might have to have another surgery if he sewed me up and the sentinel node was positive. I may have misunderstood him. I just don't want to take any chances, I guess. Have you heard of anyone having a new cancer in the other breast? I read that it is not very common. I don't have breast cancer in my family. I am the first. Also, I don't know what tests the others were talking about to have to see if you have to have chemo or not??
  • lovelylola
    lovelylola Member Posts: 279
    #4
    Grains said:

    I am not really sure. At
    I am not really sure. At first he said yes, he could do the sentinel node, with the understanding that he would take more if needed. Then he said I might have to have another surgery if he sewed me up and the sentinel node was positive. I may have misunderstood him. I just don't want to take any chances, I guess. Have you heard of anyone having a new cancer in the other breast? I read that it is not very common. I don't have breast cancer in my family. I am the first. Also, I don't know what tests the others were talking about to have to see if you have to have chemo or not??

    First of all -
    It really helps at all doctor's appts to have someone with you that can take notes. My daughter has come to every decision making appt and it's amazing what I haven't remembered and she has written down. At this point in our fight, it's really easy not to hear everything because there is so much info given to us in such a short time. You know how doctors like to get patients in and out.
    The testing that we've been talking about is the Oncotype testing and it is done after surgery on the tumor itself to help determine if chemo and other treatments will be effective. It is done for cancers that are Stage 1 or 2, no node involvement and relatively small in size. Several of us of had them or are in the process of having them done right now. Since they use the tissue from the tumor that was already taken, no further surgery is required for the testing. Please check out the thread "Oh the waiting game"
    Yes it is possible to have a new cancer in the other breast. My mother did with her cancer 40 years ago. She ended up having 2 mastectomies. That was why I opted for the double mastectomy for myself. Did want to go down the road (her's was in the 2nd breast within 6 months).
    Each of us has a different but sometimes similar cancer, treatment and/or story. Hope more information comes your way. Never feel like you can't ask a question. Someone will have an answer. Internet hugs coming your way. Lola
    Good luck with your
  • natly15
    natly15 Member Posts: 1,941
    #5
    Grains I had 2 surgeries.
    Grains I had 2 surgeries. The first to remove the tumor and sentinel lymph node. The surgeon said he sent the node to pathology while I was under, but the pathology came back negative. If it had shown positive he would have immediately removed the rest of the nodes. When I saw him for the follow up visit a week later, he apologized and said the pathology they sent to calif came back positive, thus he had to go back in and remove the rest of the nodes. My first surgery was done by a general surgeon on 7/13/09 at the local hospital. I opted for a 2nd opinion, and had my 2nd surgery 8/14/09 at a cancer center done by a surgical oncologist. I wonder if I could have avoided the 2nd surgery if it all had been done at the cancer center, but thats the past and I'm doing what I need to do now. Unfortunately for me, I developed a nasty infection at the surgical sites after the 2nd surgery and have been taking heavy duty antibiotics ever since. My onc even postponed my 2nd chemo to see if he could clear this infection. It's finally looking better, but I think I'll be on antibiotics for the duration of chemo. Had my first chemo 10/6. My 2nd chemo was moved from 10/20 to 10/27 so we could work on the infection. If I recall one of the nurses said that blood could be drawn thru the legs, not sure about the blood pressure, but I'm sure there is a way. Hope this helps some.
  • xskeetshooter
    xskeetshooter Member Posts: 169
    #6
    domt blame you
    i had that operation and i wouldnt want to go thru it again, its been 3 months now. but if i had to do it again to save my life. i would, take day by day ,good luck
  • Akiss4me
    Akiss4me Member Posts: 2,188
    #7
    Grains said:

    I am not really sure. At
    I am not really sure. At first he said yes, he could do the sentinel node, with the understanding that he would take more if needed. Then he said I might have to have another surgery if he sewed me up and the sentinel node was positive. I may have misunderstood him. I just don't want to take any chances, I guess. Have you heard of anyone having a new cancer in the other breast? I read that it is not very common. I don't have breast cancer in my family. I am the first. Also, I don't know what tests the others were talking about to have to see if you have to have chemo or not??

    The reason for two surgeries...
    He may have meant this: if he does a sentinel node biopsy, it is tested while you are on the table. This is only a preliminary test. This test however is not as accurate as the test they do afterwards, which can sometimes change the outcome, since it is a more thorough test. So if it comes back neg while you are on the table, there is the possibility it may change after the final path report and further node surgery is required. ♥Pammy
  • mimivac
    mimivac Member Posts: 2,143 Member
    #8
    Welcome, Grains
    Lola and Pammy have given you some good information about the sentinal node biopsy and oncotype test. I would add that the oncotype test will only be effective if you are estrogen positive. Ask your surgeon about the possibility of doing the axilliary node dissection during the same surgery, if needed. As Pammy says there is the chance of having to go back in, but it's not a huge probability. I had sentinal node biopsy and my nodes were negative, so no further removal was needed. Because I only had 2 nodes removed, I'm not at high risk for lymphodema. This is probably even more important to you since you have already experienced lymphadema in the other arm. If you do end up getting axillary node dissection, you will just have to play it by ear as far as which arm to use for blood pressure, etc. Make sure you ask your doctors what to do to try to avoid lymphadema in the other arm. I know it's not always possible, but being vigilent might make the difference. I wish you luck.

    Mimi
  • m_azingrace
    m_azingrace Member Posts: 399
    #9
    xskeetshooter said:

    domt blame you
    i had that operation and i wouldnt want to go thru it again, its been 3 months now. but if i had to do it again to save my life. i would, take day by day ,good luck

    Hello Grains
    First, welcome. You will find that everyone here is supportive and compassionate. I'm so sorry your cancer has recurred, and you have to go through this again. You asked about blood pressure, shots and blood draws once both arms are at risk for lymphedema. They can use your legs. It's not as handy for the health workers, but they can get over it. Hugs to you. Gracie
  • Noel
    Noel Member Posts: 3,095 Member
    #10
    mimivac said:

    Welcome, Grains
    Lola and Pammy have given you some good information about the sentinal node biopsy and oncotype test. I would add that the oncotype test will only be effective if you are estrogen positive. Ask your surgeon about the possibility of doing the axilliary node dissection during the same surgery, if needed. As Pammy says there is the chance of having to go back in, but it's not a huge probability. I had sentinal node biopsy and my nodes were negative, so no further removal was needed. Because I only had 2 nodes removed, I'm not at high risk for lymphodema. This is probably even more important to you since you have already experienced lymphadema in the other arm. If you do end up getting axillary node dissection, you will just have to play it by ear as far as which arm to use for blood pressure, etc. Make sure you ask your doctors what to do to try to avoid lymphadema in the other arm. I know it's not always possible, but being vigilent might make the difference. I wish you luck.

    Mimi

    Just want to welcome you
    Just want to welcome you Grains and tell you how sorry I am. It looks like the others have given you good info, so, I won't duplicate it. Post and let us know how you are doing when you can. Good luck!

    ♥ Noel
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #11
    I read that if you can't
    I read that if you can't have your blood pressure taken in either arm, that they take it in your thigh. I read it on another bc site where a woman had bc on both sides and had lymph nodes removed on both sides. Good luck to you and let us know what you find out.

    Sue :)
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #12
    xskeetshooter said:

    domt blame you
    i had that operation and i wouldnt want to go thru it again, its been 3 months now. but if i had to do it again to save my life. i would, take day by day ,good luck

    Hi grains and welcome.
    Hi grains and welcome. Looks like the others have given you good advice already.

    Hugs
  • New Flower
    New Flower Member Posts: 4,294
    #13
    Ritzy said:

    I read that if you can't
    I read that if you can't have your blood pressure taken in either arm, that they take it in your thigh. I read it on another bc site where a woman had bc on both sides and had lymph nodes removed on both sides. Good luck to you and let us know what you find out.

    Sue :)

    it depends on your cancer
    Hi and welcome,
    I do have lymphedema as a results of my lymph nodes removal. It is a mild to moderate and I am wearing sleeve and glove all the time. It gotten worst after radiation. I had a lump under my arm and new that it is most likely positive, so it was a clear decision to take all nodes out. 10 was positive.
    Definitely go to the breast center and breast surgeon. You have a very difficult choice and you have to take risk one way or another.
    From my own experience, I would try to save as many clear nodes as possible. You might want to talk to lymphedema therapist as well
    Good luck.
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #14
    New Flower said:

    it depends on your cancer
    Hi and welcome,
    I do have lymphedema as a results of my lymph nodes removal. It is a mild to moderate and I am wearing sleeve and glove all the time. It gotten worst after radiation. I had a lump under my arm and new that it is most likely positive, so it was a clear decision to take all nodes out. 10 was positive.
    Definitely go to the breast center and breast surgeon. You have a very difficult choice and you have to take risk one way or another.
    From my own experience, I would try to save as many clear nodes as possible. You might want to talk to lymphedema therapist as well
    Good luck.

    Wishing you good luck.
    Wishing you good luck. There is a bc survivor named RE, and, she knows a lot about lymphedema. Check out her profile for information. She has posted helpful info.

    Hugs, Diane ♥

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