• Lymph node removal options?

    Asked by Mandi75 on Friday, May 25, 2012

    Lymph node removal options?

    Has anyone opted not to have their lymph nodes removed who opted to have radiation? My cancer was originally in various lymph node areas, but doing the chemo first has shrunk the tumor up and auxiliary nodes looked healthy on ultrasound April 5th. I am being told lymph node removal and radiation is a high risk for lymphadema. They are saying since I am doing radiation, I have the option about lymph node removal. There are studies out that lymph node removal is not increasing survival rates, but many surgeons are slow to change protocol. My surgeon is open to my choice.

    11 Answers from the Community

    11 answers
    • PinkD's Avatar
      PinkD

      I had a sentinel node biopsy, and that was to determine which, if any, lymph nodes to remove. Thankfully, the biopsy came back clear and I had no nodes removed.

      about 5 years ago
    • leepenn's Avatar
      leepenn

      If there is no difference in disease-free survival, I would say NOT having nodes out would be the way to go. That's just my opinion. I had mastectomy on both sides but sentinel node biopsy only on the right, and the difference between the two is pretty big, and I have had nearly no complications! The only thing I had was a little bit of fluid on the right side after the drain was removed. Anyway, the big difference is the enormous patch of numbness on the snb side. It's just plain weird. Also, I got cording, which is a common occurrence... It's not painful... But it did slightly limit my range of motion. Also, if you look at the list of dos and don'ts for preventing lymphedema, it's HUGE. They say no more hot showers, hot tubs, needle sticks, blood pressure measurements, etc... On that side - ever. According to the lymph edema experts, you have to assume you are at risk for the rest of your life. I'm super low risk for lymphedema, but I was also super low risk for breast cancer in the first place. Anyway, I am an athlete, and they are also telling me that I simply cannot allow the arm to get injured. Okay, I refuse to live my life in a cage... I will still be an athlete... Ill be careful, but I'm not going to stop doing things just in case....

      So, if you have the choice and there is no difference in disease-free survival, then I would say keep them if you can!

      Good luck - it is so great that you have the option!

      about 5 years ago
    • Mandi75's Avatar
      Mandi75

      My surgeon still wants to do the sentinel node biopsy and if it shows significant cancer, she would prefer to take all the auxiliary nodes out but is letting me make the final decision since it is so controversial whether taking them out is necessary when you opt to do radiation. That just scares me to death all the risks and didn't even know yet about the avoiding hot showers and injuries. It just seems like overkill when you do the radiation. I have until June 11th to make the decision.

      about 5 years ago
    • leepenn's Avatar
      leepenn

      Just sentinel node biopsy keeps a person in low risk for lymph edema, I think.... But I'm not sure when you add radiation.... Tough decision.... Keep asking questions until you feel confident!

      about 5 years ago
    • Mandi75's Avatar
      Mandi75

      Thanks for the responses so far! Certainly a tough decision.

      about 5 years ago
    • nancyjac's Avatar
      nancyjac

      Radiation is very targeted so I would think it would depend most on where and how many lymph nodes are suspect for remaining cancer cells. If they would require widening the field of radiation, then, surgical removal may provide less of a lymphodema risk than additional areas to be radiated.

      about 5 years ago
    • Fighter's Avatar
      Fighter

      Hello mandi75, I too have inflammatory breast cancer. I had 6 chemo rounds and on Feb 17 this year, they removed both of my breasts and 14 lymph nodes from my right side. 2 nodes were still positive for the cancer. I started my radiation already. I have had 4 days of it and I have 34 more days to go with the radiation. My oncologist will have me on Herceptin every 3 weeks for the next 5 years. Its what we do to be free of it. I must admit that right now I feel great, no pain at all. Hope your treatments go well for you. Tough decisions, I know. Definitely continue with the questions on any and all doubts.

      about 5 years ago
    • Sunnydays' Avatar
      Sunnydays

      I had left mastectomy and 1 lymph node was positive. 1 month later I made the difficult decision to do Lymph Node Dissection on that side. Removed 12 more lymph nodes and 1 more was positive. I was glad to know only 2 were positive, total - and I was also glad to have them out. I'm not sure if I would personally trust radiation or chemo to definately kill the cancer. I'm glad the cancerous parts are gone. But yes, I have no feeling from my elbow to under my arm to all across my chest and the recovery was painful with lots of shooting sharp pain in my arm. I think some big nerves got cut. I stay active and have slowly done weight lifting etc. I try to protect arm from sun burn, mosquito bites, cuts, "falling asleep", etc. Will have to be careful the rest of my life, but I'm glad to know the cancer is out and I'll just do what I can to prevent lyphedema. It was a difficult decision, though, so my thoughts are with you to do what feels right for you.

      almost 5 years ago
    • Mandi75's Avatar
      Mandi75

      I so appreciate everyone's posts. My surgeon wants to do the sentinel node biopsy and make the decision based on that. It is just such a new ground leaving lymph nodes in. I have to be radiated around the lymph nodes regardless. I keep leaning towards leaving them in.

      almost 5 years ago
    • MarnieC's Avatar
      MarnieC

      Hi Mandi75, I wrote a blog post about the sentinel node biopsy just a few days ago: http://marnieclark.com/the-marvels-of-the-sentinel-node-biopsy/ - perhaps something in it will help you. Sending you lots of healing and love today. xoxox

      almost 5 years ago
    • Mandi75's Avatar
      Mandi75

      Thanks MarnieC for the blog link. Good explanation of the sentinel node dissection.

      almost 5 years ago

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