Pros and Cons of Removing All lymph nodes in the left groin area

sg8856
sg8856 Member Posts: 1
edited March 2014 in Skin Cancer #1
I'm a healthy female, married. I was recently diagnosed melanoma and had three sentinel lymph nodes removed from the groin area of my left leg for biopsy test. the result came out that one node was positive and the other two were negtive. My surgeon recommended to have the complete lymph node dissection to removed all the nodes in left groin area. The surgeon did mentioned some of the side effect such as lymphedema. I would like to learn from others experience.what was your experience of having lymphedema after removing all the lymph nodes in the groin regin.

I highly appreciate for your input and thank you all.

Comments

  • Lwallace121
    Lwallace121 Member Posts: 1
    Actually I'm going through
    Actually I'm going through the same (diagnosed & they took a fee lymph nodes from groins & behind right knee) I'm sort of researching the same so if u find anything...let me know :) thanks
  • dolphin52865
    dolphin52865 Member Posts: 1
    Hello, I had several lymph nodes removed from my right groin in 2005. I did the proper follow ups over the next several years. In Sept 2008 a CT scan found out that my melanoma had come back to several lymph nodes in the right groin and to my liver. I asked the doctor if we should take the rest of my lyph nodes out of my right groin. I was told that if I did my lymphedema would get worse. The leg could end up with elephantitis. I even asked about radiation and they said that it would kill the good and bad tissue in my groin area and that would make my lymphedema just as bad.

    My right leg is always bigger than my left. At times it swells up and turns very red and hot. I even get a low grade fever once in awhile and have to take antibiotics. I take a water pill everyday so the fluid doesn't sit in the leg. I walk and exercise as much as I can.


    I hope this helps you.
  • Bill58
    Bill58 Member Posts: 1

    Hello, I had several lymph nodes removed from my right groin in 2005. I did the proper follow ups over the next several years. In Sept 2008 a CT scan found out that my melanoma had come back to several lymph nodes in the right groin and to my liver. I asked the doctor if we should take the rest of my lyph nodes out of my right groin. I was told that if I did my lymphedema would get worse. The leg could end up with elephantitis. I even asked about radiation and they said that it would kill the good and bad tissue in my groin area and that would make my lymphedema just as bad.

    My right leg is always bigger than my left. At times it swells up and turns very red and hot. I even get a low grade fever once in awhile and have to take antibiotics. I take a water pill everyday so the fluid doesn't sit in the leg. I walk and exercise as much as I can.


    I hope this helps you.

    i had a tumor removed from my left thigh in April 2010. The sentinal node biopsy took 6 lymph nodes, 5 positive. all doctors agreet that additional surgery to remove more lymph nodes was required. Will undergo procedure on June 10th. They will remove a few lymph nodes until they get to one of the main ones (forget what name they called it). If that one is clean, they will stop. If it is positive, they will dig deeper. They want to remove as few lymph nodes as possible. I am concerned about the lymphedema and will have to deal with that if and when it happens. Have not decided on the follow up treatment after the surgery. Interferon for 1 month 5 days per week and then 11 months is one option. IPI... is another option. there is a trial out of NIH in bethesda that is another option if my blood type matches. Hoping for a match at NIH and possible high success rates of non-recurrance.
    keeping my fingers crossed.
  • mh1229
    mh1229 Member Posts: 22
    I had 13 nodes + the
    I had 13 nodes + the sentinel node and have had no lymphedema past the 1st week. Mine is my right groin. I have had numbness in my big toe. Sometimes it just itchy or tingly. It is a nerve thing and may or may not resolve.
    I am 31 and female. Before surgery I did ask if there was a certain population that were more likely to battle lyphedema and he said being young and active was in my favor.
    Melanie
  • washoegal
    washoegal Member Posts: 45
    Bill58 said:

    i had a tumor removed from my left thigh in April 2010. The sentinal node biopsy took 6 lymph nodes, 5 positive. all doctors agreet that additional surgery to remove more lymph nodes was required. Will undergo procedure on June 10th. They will remove a few lymph nodes until they get to one of the main ones (forget what name they called it). If that one is clean, they will stop. If it is positive, they will dig deeper. They want to remove as few lymph nodes as possible. I am concerned about the lymphedema and will have to deal with that if and when it happens. Have not decided on the follow up treatment after the surgery. Interferon for 1 month 5 days per week and then 11 months is one option. IPI... is another option. there is a trial out of NIH in bethesda that is another option if my blood type matches. Hoping for a match at NIH and possible high success rates of non-recurrance.
    keeping my fingers crossed.

    Bill58
    Good luck Let us know how you do. I hope you qualify for the clinical trials. I opted not to have any Interferon. But I had only two sentinel nodes positive for cancer and those had a very small microscopic amount in them. I did have all my lymph nodes removed from under my arm though. All were clear, and of course now I am second guessing the decision to take all the nodes rather just monitor which was another option offered. Lots of lumps and bumps going on but able to do pretty much what I as able to do pre-surgery, 3 months later.

    Each one of us has to make our own decisions, for me it was a trade off of 1 year of feeling lousy versus a small improvement in the odds. I was hoping to get things done and over with. I guess cancer just doesn't work that way.

    Once again good luck.
  • Meg1414
    Meg1414 Member Posts: 3
    lymphedema
    I had most of the lymph nodes in my left groin area removed. Only 1 tested positive. I think, though, that it was better for me to trust the doctors and be sure it was gone. I also did the interferon for a year. For 2-3 years, my leg was fine. Then the lymphedema kicked in. It's something I'll have to deal with for the rest of my life, but they have good therapists now and I sleep in a "night garment" which is an amazing thing. Because of that, my leg is good most of the time. Heat makes it worse, and once I had a 26 hour bus ride that made my leg huge! But it's something that I've learned to keep under control. When I start to whine about my "puffy leg" I remember that I'm still here. They gave me 18% odds of making it 5 years, and I'm on 8 and still going. And I don't let it stop me from doing things I like. I just joined roller derby about a month ago. :) So, if you did decide to take them out and you do end up getting lymphedema, don't let it stop you. You can get lymph massage and compression socks and sleep in a boot like I do, and life is basically no different. Wishing you all the best!
  • ce93109
    ce93109 Member Posts: 1
    Lymph node removal side effects

    i had one removed in right groin & for the first month my thigh was in a lot of pain. I have also had edema in my right leg specifically foot & ankle for 3 months.   Cannot get reduced even with elevating & wearing compression socks.  Totally frustrated since I have only been able to wear flats. How long will this last??  Very sorry to hear u had 3 removed.  Cannot imagine the frustration u have gone thru.  

  • AMBS76
    AMBS76 Member Posts: 1
    Not an easy decision

    I am also Stage III and I was told I needed all the lymph nodes removed from my right groin. I had the surgery and the swelling in my thigh kept the incison from healing, so they had to cut it open so that it could be packed twice a day with gauze to soak up all the fluid coming out. My surgery was on July 21 and I am still packing the area and wating for it to heal. When I went to Medical Oncologist about treatments, she informed me that the treatments they have out there will not decrease my 60% chance of the melanoma returning, so I have just decided to play the waiting game and get checked every three months from now. To be honest, if I knew how bad my leg and the pain was going to be from having all my lymph nodes removed and that none of the therapy's they offer will change my percentage of it coming back, I would not have had the surgery. This is just my opinion and it's a hard choice to make. I hope all turns out well for you.