Confused About the Treatment Plan

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lacrimosa
lacrimosa Member Posts: 12
edited January 2019 in Stage III Breast Cancer

Hello everyone! I’ve posted in the forum a few times about my mother’s bc. I have some questions maybe someone can help me.

It’s been 5 months since my mother diagnosed with bc. Its grade 2, hormone + and her -. First we were informed that it was stage II. She had surgery and they removed the tumor. Not the whole breast. She finished her chemo 3 weeks ago. 4 AC and 4 Taxol, 8 in total. 3 days ago she had a second surgery for her lymph nodes. Her doctor first said he is gonna send the nodes to pathology during surgery and if they are positive he is gonna remove them all on the same day. She ended up removed 3 lymph nodes and we all assumed it was fine. Today we saw her surgeon again and all 3 nodes came back positive. 2 sentinal and 1 non sentinal (I have no idea what that means) He is saying he is gonna remove all the nodes now. I just don't understand why he didn't at the first place.

We are also confused about the things her oncologist said. He was saying she is all clear and nothing left to be worried about. Turned out that was not the case. Now she is worried about it again. Very depressed and sad. She is afraid she will have chemo again. The plan was radiotherapy but now we just dont know what to expect. Does anyone had the same experience? Why 3 operations? Why didn't he remove everything at once? Hows the prognose going to be? So many questions and no answers so far....

Comments

  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited December 2018

    So sorry to hear your mom is going through this kind of stress. The diagnosis is stressful enough without the added stress of all these additional surgeries. Here is the answer to your question: not all hospitals are equipped the same. It sounds like the hospital your mom had her surgery at did not study the 3 lymph nodes that were removed while she was still sedated in the surgery room. I went to Dana Farber and the surgeon explained to me that the most current protocol is to only remove the first 3 nodes. If those nodes are found to contain cancer than to remove more. She also told me their hospital checked nodes immediately after she removed them so if removal is necessary, they can do it immediately preventing second surgery. I asked the question why not just remove them all and they said they would only do that if evidence of cancer in first 3. There are side effects (lymphademia) for the complete removal and that is reserved for those that have evidence of spread. The first 3 nodes are a filter that protects the other nodes. If the filter is clean, no worries. Hope this answered your question.

  • lacrimosa
    lacrimosa Member Posts: 12
    edited December 2018

    Wow! Thank you so much! That explains a lot. We were hoping that chemo would work on her lymph nodes as well but clearly it wasn't enough. At least it is a good thing that they will remove all the lymph nodes for further reoccurrence. I hope she won't have to go another chemo but stay with radiation only. She is pretty tired from all that chemo treatment. Thank you so much for your reply.

  • Kathleen26
    Kathleen26 Member Posts: 210
    edited December 2018

    It is not at all uncommon, especially for ER+ cancers for the chemo to leave cancer cells behind. After the same diagnosis as your mom, I had surgery and they found cancer cells in 8 nodes out of 16 that were removed. That was 8 years ago so it does not mean there is no hope. Radiation will help clean up after her node surgery. But the real key and in many cases the most important treatment for ER+ cancer is either an AI like anastrazole, or tamoxifen, taken for up to 10 years. She should speak to her oncologist about when she will start that. Your mom will not necessarily be given additional chemo.

    As far as the surgeon goes, yeah, you should call him out on what went so wrong that she will need a third surgery. As an earlier poster mentioned, not all hospitals have the same abilities, but it may have been something as simple as the pathology lab was short-handed that day and the surgeon had to get out of the operating room before the evaluation was complete. Or he may have visually decided that he didn't need to wait. But he should explain it if it contradicts what he told you earlier.

    I think it's a shame if the oncologist led you all to believe that everything is "all clear" when she hadn't even had her nodes looked at, as if she were somehow cured by the chemo. It typically doesn't happen that way. I think they must be trying to make frightened people feel better in the moment, because no matter what they tell you, they cannot promise one prognosis or another. They just do not know how it will turn out. That's one of the hardest things to deal with in breast cancer.

    Best of luck to your mom; she is lucky to have you by her side as she goes through this. The radiation will also tire her out, so she could use your support through that also. She should do all she can to fight the cancer, then hope for the best, and try to move on with her life.

  • lacrimosa
    lacrimosa Member Posts: 12
    edited December 2018

    Thank you for your answer. It helps a lot to read similar stories for both of us. She will start hormone therapy right after her surgery for her lymph nodes. She will be taking tamoxifen pills for 10 years. We are upset about her 3rd surgery but if that is another step to kick cancer's butt we will welcome it with full power!

    We will see the surgeon next friday and most probably she will be in surgery 10 days from now. Just hoping for the best.

    Thank you again for your support, I dont know what would I do if i didnt find this forum months ago. You are all amazing.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2018

    Hi!

    I'm sorry that your Mom has to have a third surgery. Sometimes, a quick examination will reveal whether or not nodes are cancerous, and the doctor can immediately remove the rest of the Levels 1 and 2 nodes during the same surgery. However, sometimes the cancerous nodes only become apparent during a more careful examination afterwards. That is what appears to have happened to your Mom. Today, surgeons would like to remove fewer nodes because the removal of all the Levels 1 and 2 nodes is associated with a higher risk of lymphadema. I had all my Levels 1 and 2 nodes removed, but I haven't developed lymphadema. Hopefully, your Mom will be as lucky. But, you might want to have a lymphdema specialist measure her arm now so that she has a baseline set of measurements for the purpose of comparison. ((Hugs))

  • NancyD
    NancyD Member Posts: 3,562
    edited December 2018

    While the current protocol is ten years on an AI, if the cancer is Stage 3, many oncs are keeping their patients on longer than ten years. I just came up on ten years in September. I took a 2-1/2 month break from mid-October to the end of this month to see if my arthritis would improve, but since I don't see any change, I will start my anastrazole again in a few days. My bones have been fine so I'm not concerned about bone deterioration for now.

  • lacrimosa
    lacrimosa Member Posts: 12
    edited December 2018

    Our onc said the same thing about the meds. 10 years for sure and more if we can. Our surgeon said that they couldn’t feel the nodes by hand because of chemo. I think they were more swollen before and less now. He is a very famous doctor here in our hospital. Seven more people were waiting for surgery after us. Maybe it was a time issue I don’t know, he wanted to operate other bc patiens as well. We accepted the fact that she needs to hav another surgery.

    I have one more question, after her taxol chemo she had serious numbness and tingling sensation on her feet and hands. We know its because of neuropathy but are they perminant?

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2018

    Hi!

    Neuropathy often resolves itself, but it can be permanent. Make sure that your Mom's oncologist knows about this side effect. Also, ask the oncologist whether it is OK for your Mom to ice her hands and feet during chemo to prevent her neuropathy from progressing or getting worse. Good luck!

  • Kstinekd
    Kstinekd Member Posts: 40
    edited January 2019

    Sorry your mom is going through this. In the ER they tested my four nodes and the test said they were clear. Once they were dissected by the pathologist, they found tumors in two nodes and cancer cells in two. They thought I had a 2cm tumor based on ultrasound, mammogram and MRI, but it was determined to be 10cm in pathology. Some cancer just doesn't show up on images and quick tests. I have found other accounts similar to mine and your moms, where the OR test was clear and path report said otherwise. It's frustrating that with modern technology, cancer can still be so sneaky. Wishing you and your family well.

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