lymph nodes

sandyc
sandyc Member Posts: 1
edited March 2014 in Breast Cancer #1
I was just diagnosed with invasive ductal in my left breast August 1. Right breast still unknown. Is it possible to know before surgery if the lymph nodes are or are not affected? My doctor says not until the surgery. If it is possible, what is the procedure called? I read a posting about not removing the lymph nodes because they help the immune system. That makes sense. Has anyone ever said "no" to the removal of the lymph nodes? This is all so new and confusing. It just seems breast cancer treatment is so cut and dried--we cut off your breast, rip out your lymph nodes, and then let you know what your chances are for survival. (This has not been a good last couple of days--can you tell?) Is it possible to say I want it done differently--or even not at all? I look forward to your comments and experiences. I sure need some support from people who have been there. (PS: This is the first time I have ever posted anything online!)

Comments

  • _Karin_
    _Karin_ Member Posts: 2
    #2
    Hi Sandy,

    I had what is called a Sentinel Node Biopsy. Using this procedure, they only remove 2 or three nodes to determine if it has spread. If it hasn't, then they don't need to remove anymore. There is information at this website:

    http://imaginis.com/breasthealth/sentinelnode.asp

    It is very important to let them check your lymph nodes to determine whether the cancer has spread. I know it is very frightening and confusing. Research the net and educate yourself about all your options. I keep a running list of questions for my doctor between visits. If I am seeing the dr to discuss surgery or treatment options, then I bring someone with me. I get so upset half the stuff just goes right out of my head. That way there is someone calm that can help me remember everything the dr. said. Everything moves so fast, you don't have a chance to absorb you have cancer before they have you off for surgery and/or treatments. You don't have to say yes to EVERYTHING the dr says right at that minute. You can always get a second opinion. You can ask for a couple of days to make up your mind.

    Hang in there and best of luck to you.
  • lindatn
    lindatn Member Posts: 229
    #3
    Sorry you have joined this club that no one ever thought they would be in but we are here for you. Karin gave you excellent advice, and a great web page. Do remember one thing as you go through this you are paying these Drs, they work for you, and yes you can say NO to anything you don't want. Just have knowledge of what you are saying NO to. Being informed is power. Ask what the long term effects will be on whatever treatment they want you to under go. My Dr did a needle lymph node biopsy in his office, I knew I had cancer in a lymph node before they started chemo. I had chemo before I had the lumpectomy. I ended up with two cancerous nodes but this was in 2002 and they still took thirteen or so, not many breast center are doing that anymore unless the tumor is really large. Either take a tape recorder or someone with you for the first few appointments just too comfusing to go it on your own. These next two weeks or so will probably be the worst you will go through mentally anyhow. God Bless Linda
  • LorettaB
    LorettaB Member Posts: 51
    #4
    Hi, Sandy,

    I had what Karen had...sentinel node biopsy. My surgeon took out the sentinel node, checked it for cancer cells, it came back negative and he didn't take any more. The final path report found microscopic metastatic cells in the sentinel node, but my surgeon said chemo would take care of that. My chemo oncologist did send me back into surgery to get more, but they all came back negative.

    Get a second opinion. I know it's a pretty tough time right now, but if you really feel in your heart that you want something different, then check it out. Always question your doctors. Medicine is still an art and some artists are better than others. Some are more creative than others and some are more daring. In one post I read here, someone mentioned that at the time of surgery when the tumor is taken out, ask your doctor if the tumor can be tested to see what chemo drugs work best on it. It could help you later if you need chemo. I wish I had known about that because I would have asked my surgeon about it.

    Welcome to the club nobody asked to join! There are many, many lovely people here who can help. Hang in there...it'll get better!

    Lo
  • lbaccash
    lbaccash Member Posts: 2
    #5
    I agree with the other posting about the Sentinal Node Biopsy. I had a lumpectomy on July 11th and they did the Sentinal Node Biopsy. They explained that if the Sentinal Node is negative they don't take anymore. Mine was positive so they took more. They ended up with 17 nodes of which 2 were positive. I do not regret at all them taking the nodes. The concern of lymphedema is not nearly as great as the concern of the cancer spreading to other organs. It usually spreads through the lymph system. So you can have piece of mind it probably hasn't spread if the nodes are negative and if positive you can have further tests and the appropriate treatment (i.e., chemo). Good luck with your decision. I'm going to be starting my 1st chemo in about a week so I'm freaked out too!
  • DiO
    DiO Member Posts: 51
    #6
    I also had a sentinel node biopsy done at the time of my lumpectomy. They used both a radioactive tracer and blue dye to determine the sentinel node. I had one node with heavy uptake of both the tracer and the dye and that one was positive for cancer. I also had 4 other nodes with either dye or tracer and they were removed also along with one other that was very to close to the affected ones for a total of 6. Only the first was positive, so they decided I didn't need to go back for more surgery. I've done well with the small # of nodes removed--no lymphedema or any other problems with the area so far! It's a big help to have the sentinel node procedure available now so they don't have to remove as many nodes as previously was necessary.

    Good luck with your surgery and treatment plan. I know how scary this time is for you--we've been there and are here to tell about it--there is light at the end of the tunnel! Get all the info you can from reliable web sites like this ACS, WebMD and Mayo Clinic, and don't be afraid to ask questions of your docs for info specific to your case, as each one is different. Feel free to come here with questions any time! Just remember everyone reacts differently to each treatment, so you won't necessarily have the same side effects and reactions as others, but it can be comforting to know as you experience different things that others have been there too!

    God bless, Di
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #7
    DiO said:

    I also had a sentinel node biopsy done at the time of my lumpectomy. They used both a radioactive tracer and blue dye to determine the sentinel node. I had one node with heavy uptake of both the tracer and the dye and that one was positive for cancer. I also had 4 other nodes with either dye or tracer and they were removed also along with one other that was very to close to the affected ones for a total of 6. Only the first was positive, so they decided I didn't need to go back for more surgery. I've done well with the small # of nodes removed--no lymphedema or any other problems with the area so far! It's a big help to have the sentinel node procedure available now so they don't have to remove as many nodes as previously was necessary.

    Good luck with your surgery and treatment plan. I know how scary this time is for you--we've been there and are here to tell about it--there is light at the end of the tunnel! Get all the info you can from reliable web sites like this ACS, WebMD and Mayo Clinic, and don't be afraid to ask questions of your docs for info specific to your case, as each one is different. Feel free to come here with questions any time! Just remember everyone reacts differently to each treatment, so you won't necessarily have the same side effects and reactions as others, but it can be comforting to know as you experience different things that others have been there too!

    God bless, Di

    I'm the one who started the question about the reasoning behind removal of the lymph nodes.
    You gotta ask yourself what good does it do to remove the lymph nodes? Are the lymph nodes positive because they are fighting the cancer? Does removal of the nodes hinder the body's healing process. If you had strep throat and your lymph nodes (glands were swollen) would the doc remove them and if he did don't you think he would find evidence of strep? Would you remove the nodes till you got to one that showed no infection?
    Is there anyone here who had no positive lymph nodes and later had a metastasis?
    Is there any here who had positive nodes and all were removed with negative nodes beyond and still got a metastasis?
    The lymphatic system starts out as tiny, tiny capalaries in the tissue. It is the garbage collector for the body. The blood supply brings trash to the lymph system to be disposed of...now if the cells get there by blood vessels is it even remotely reasonable to think all the trashy cells are going to get thrown away? If one cell gets away it is then microscopically in the blood. Is it logical to take out the clean up crew and then hit the body with a toxic agent?
    Just food for thought.
    hummingbyrd
  • Kathy1108
    Kathy1108 Member Posts: 62
    #8
    DiO said:

    I also had a sentinel node biopsy done at the time of my lumpectomy. They used both a radioactive tracer and blue dye to determine the sentinel node. I had one node with heavy uptake of both the tracer and the dye and that one was positive for cancer. I also had 4 other nodes with either dye or tracer and they were removed also along with one other that was very to close to the affected ones for a total of 6. Only the first was positive, so they decided I didn't need to go back for more surgery. I've done well with the small # of nodes removed--no lymphedema or any other problems with the area so far! It's a big help to have the sentinel node procedure available now so they don't have to remove as many nodes as previously was necessary.

    Good luck with your surgery and treatment plan. I know how scary this time is for you--we've been there and are here to tell about it--there is light at the end of the tunnel! Get all the info you can from reliable web sites like this ACS, WebMD and Mayo Clinic, and don't be afraid to ask questions of your docs for info specific to your case, as each one is different. Feel free to come here with questions any time! Just remember everyone reacts differently to each treatment, so you won't necessarily have the same side effects and reactions as others, but it can be comforting to know as you experience different things that others have been there too!

    God bless, Di

    I also had a sentinel node biopsy at the time of my mastectomy in 03. They also used both radioactive tracer and blue dye and found that I had it in 4 nodes. The surgeon took 15 of my nodes out because of it. Now my left arm is always fuller than the right one. I can not have any IV, blood pressure cuff and injections in that arm ever again. Can not wear anything tight on that arm. But I am glad that they got all of the cancer. I just had my yearly scans in June and I am still cancer free.
    Kathy
  • reach4thesky
    reach4thesky Member Posts: 12
    #9
    I was diagnosed in March this year. I had a radical mastectomy on May 5th. All of my lymph nodes were removed. It was explained in simple terms by my radiologist one day that even if I had a sentinode biopsy, it is not 100% guaranteed. What if the 1 lymph node behind the others tested had cancer, that is all it takes to have it spread. My doctors were more on the aggressive side. For me, that is what I feel most comfortable with. Take it all. This is just my opionion. I have had no problems yet with them being gone, however, I am aware problems could surface down the road.
  • breinhart
    breinhart Member Posts: 1
    #10
    My surgeon told me that they can remove one or two lymph nodes for testing? I wasn't so lucky, during my mastectomy he removed 19 of my nodes and 12 were positive. My oncologist said it was odd because some of my lymph nodes were bigger than my tumor. (1/4 inch) I just decided to get it all over and done with, get rid of my cancer and worry about reconstrution (if I decided to have it) later. I had surgery, chemo, and radiation and I'm still here almost 3 years later. I just never thought about telling my doctors no. I figured they knew more than me. I remember it being really tough in the beginning, hang in there, it will get better!
  • cabinlea22
    cabinlea22 Member Posts: 2
    #11
    breinhart said:

    My surgeon told me that they can remove one or two lymph nodes for testing? I wasn't so lucky, during my mastectomy he removed 19 of my nodes and 12 were positive. My oncologist said it was odd because some of my lymph nodes were bigger than my tumor. (1/4 inch) I just decided to get it all over and done with, get rid of my cancer and worry about reconstrution (if I decided to have it) later. I had surgery, chemo, and radiation and I'm still here almost 3 years later. I just never thought about telling my doctors no. I figured they knew more than me. I remember it being really tough in the beginning, hang in there, it will get better!

    Your story is almost identical to mine. 3 year survivor. Left breast positive. Decided to have both breasts removed. Went to meetings prior. Lymphedema never mentioned. Lots of problems with swelling on both sides; mostly left side. Read up on massage therapy, but my HMO is inadequate in having people trained in technique. Immune system compromised; glad to be alive, but suffering. Live alone, so have to do with inadequate self massage. I wish I had known the whole story of lymph node removal, and its consequences. Thanks for listening.
  • lizzybme
    lizzybme Member Posts: 1
    #12
    lbaccash said:

    I agree with the other posting about the Sentinal Node Biopsy. I had a lumpectomy on July 11th and they did the Sentinal Node Biopsy. They explained that if the Sentinal Node is negative they don't take anymore. Mine was positive so they took more. They ended up with 17 nodes of which 2 were positive. I do not regret at all them taking the nodes. The concern of lymphedema is not nearly as great as the concern of the cancer spreading to other organs. It usually spreads through the lymph system. So you can have piece of mind it probably hasn't spread if the nodes are negative and if positive you can have further tests and the appropriate treatment (i.e., chemo). Good luck with your decision. I'm going to be starting my 1st chemo in about a week so I'm freaked out too!

    did it spread to other

    did it spread to other organs?  I go in today for a needle biopsy on my right breast.  The surgeon is concerned with enlarged lymph nodes, and suggested we start chemo first to shrink the tumor

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