• PET scan shows mediastinal lymph node enlarged and hypermetabolic suspicious for metastatic disease

    Asked by Steph921 on Tuesday, February 26, 2013

    PET scan shows mediastinal lymph node enlarged and hypermetabolic suspicious for metastatic disease

    Hi, I was diagnosed in 7-12, HER 2 positive breast cancer, had chemo (with excellent response) from 8-12 through 10-12. Had bilatteral mascetomy with lymph node dissecetion on 12-17-12. I was about to start rads when the CT scan show enlarged lymph node in my chest. I was sent for a PET scan where this was discovered. Onc says it's not curable but could be controlled with chemo for many years. They say no surgery can help and rads won't do anything. Has this happened to anyone? He wants me to go to MD Anderson for a second opinion and also posible clinical trials. They seem to be the top rated place in the country and are only 5 hours away so I think I'm going to go for it, leave no stone unturned, so to speak. I'd appreciate any advice anyone has to give. Thanks!!

    12 Answers from the Community

    12 answers
    • carm's Avatar
      carm

      Hi Steph921,
      I am an oncology nurse and I can understand your concern. I think it is a great idea for you to get a second opinion and MD Anderson is a great place. The node affected is not unusual for breast cancer, I think his suggestion is based more on your type of cancer (HER-2+). It can be a bit resistant, but no matter what type it is always a good idea to get a second opinion, and the mark of a good oncologist who suggests one. Best of luck to you, Carm RN.

      almost 4 years ago
    • nancyjac's Avatar
      nancyjac

      I've read your question three times and I am still missing something. You said the CT showed an enlarged lymph node, but then say it was discovered by a PET scan. I didn't find anything confirming that it is malignant. Was a biopsy done? I have never heard of many years of chemo just to "control" a single enlarged lymph node. I would definitely recommend a second opinion.

      I am also HER2 positive but I don't see any correlation of your situation to being HER2 positive.

      almost 4 years ago
    • Steph921's Avatar
      Steph921

      Sorry if I misstated, it showed enlarged lymph node on the ct scan on Monday so I had the PET scan on Wednesday which showed the metastatic disease. I don't know if it has anything to do with the HER 2 or not, just background info. Also, KI 67 (I think that's right?) was 97%, which my understanding means very agressive.

      almost 4 years ago
    • AlizaMLS's Avatar
      AlizaMLS

      Dear Steph921,

      I know this isn't the news you wanted to hear, but I think your doc has a good idea if you're only 5 hours from MD Anderson. Second opinions are always a good thing and they may actually be able to do something for you even if it's a clinical trial-you never know!...

      I know you must be terribly anxious but hope you're not in physical discomfort. I'll keep you in my thoughts.

      Keep me posted.

      Warmest wishes,
      AlizaMLS

      almost 4 years ago
    • nancyjac's Avatar
      nancyjac

      PET scans can show metastatic disease, they can only show high metabolic activity. An enlarge lymph node can be enlarged because it is inflamed or infected which would show as a hot spot on a PET, Why can it not be biopsied or simply removed?

      almost 4 years ago
    • carm's Avatar
      carm (Best Answer!)

      Steph, KI 67 is an antibody on the surface of the cell. Anything above a 22% usually means it is highly proliferative, or cells that are rapidly dividing. While it is true that PET scans detect a metabolic rate, it bears repeating that cells with a high metabolic rate are MALIGNANCIES, and so PET scans DO detect malignancies by measuring the rate of metabolic activity with a SUV (Standardized Uptake Value) score. Anything above a 2.5 SUV is considered a malignancy as a normally deviding cell is a 1, and between 1 and 2.5 is usually pre-cancerous. I can understand why it is not an option for surgery or radiation, however KI 67 antibody proliferates do not mean that it will not respond well to somthing akin to Tamoxifen and there is no reason to assume that score or cell type affects survival. I can tell you that it is rare to have an oncologist who refers a patient for a second opinion outside of the hospital they are affiliated with. It shows that your oncologist puts his patient above his paycheck, thats refreshing. I once had an oncologist call Burzynski clinic and ask Dr Burzinski to please take a cervical cancer patient and treat her because she could no longer treat her with conventional treatment, and he did. You are lucky to have such a caring physician who reaches out to the medical community and expands your team to get you the best possible care. Best of luck to you and I think that a drug like Tamoxifen can be very effective in your case and he is right that it can be controlled chemically. Carm RN.

      almost 4 years ago
    • raven's Avatar
      raven

      I am an MD Anderson patient and am very pleased with the level of care I have received there! I would heartily recommend them.

      almost 4 years ago
    • gogolf's Avatar
      gogolf

      I also have about the same cancer as you and I was diagnosed on September 28, 2009 so go for what ever the Doctors recommend and you will be fine. I have done chemo twice and am taking Herceptin for the rest of my life. Just go with your new normal and have a good day. Remember, you have cancer, cancer does not have you.

      almost 4 years ago
    • MillieS's Avatar
      MillieS

      Hi, I am currently here in Houston. I drove 6hours to be here at MD Anderson. I have stage 4 BC mets to bone and liver. When I filled out their form I said I didn't want to be in studies. I am pain free at the moment.when I got here it took 30 min to register , a 10 min wait , the doctor swooped in spent maybe 10 min with me. Pushed a trial that his friend was overseeing,swooped out. Saw the nurses overseeing the trials for the vaccine. Let me warn you...... You have a 33% of get the placebo. Each will be given with cytox in infusion ( low dose). I am feeling too good at this moment to do that and get a placebo. Nothing else was offered. So if you expect to get all that pampering I.e. nutrition , how to handle pain, how to live with your disease , I would not recommend M D Anderson. I felt like I went through a revolving door. Actually had to call nurse back in to ask if that was it, when should I come back the next day? That was all there was. Six hours to get to a 10 min non informative visit with some one who treated me like a piece of meat! If your are going for the trials remember you have a one in three chance of getting the nothing! I wish you prayers and hugs. MD Anderson was not a good experience for me hope its better for you.

      almost 4 years ago
    • Lindy's Avatar
      Lindy

      Go!!! Good news on TDM1 approval, go, go, go. Top ranked. You are worth it!

      almost 4 years ago
    • Steph921's Avatar
      Steph921

      Thanks Lindy! Excuse my ingorance, what's TDM1?

      almost 4 years ago
    • carm's Avatar
      carm

      Steph, TDM1 is a treatment of Herceptin and Tykerb. Doing well in studes for HER2+ patients. I believe this is what Lindy was referring to, Carm RN.

      almost 4 years ago

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