Well, I have decided to do it (cnld)….
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Well, I have decided to do it (cnld)….

› Forums › General Melanoma Community › Well, I have decided to do it (cnld)….

  • Post
    • July 29, 2016 at 2:34 am
    slh4448
    Participant

    So today I met with my oncologist. The great news is that my pet scan and mri came back clear…whew!! So I am stage 3a. Then our discussion turned to the clnd of my right groin. As many of you know from my posts and your responses about this very topic lately and my anguish and worry about whether or not to have the clnd, I decided after much discussion and many questions that I am going forward with it. My surgery is on August 26th. Around late September or early October I will then start my immunotherapy. I was definitely wavering and even as I type this, I still am, really. But both MD Anderson and my oncologist at KU agree that this is the next step that I should be taking. I will evenutally be at peace with it and have put my faith in God that everything will turn out just fine. Won't be easy or pleasant but I'm a fighter, really pretty healthy and a very good immune system, so F-it! I'm swinging for the fences with God by my side!! I really appreciate everyone's support and responses and encouragement regarding this.

    Stacy

     

Viewing 11 reply threads
  • Replies
      • July 29, 2016 at 3:38 am
      jennunicorn
      Participant

      Sending good thoughts your way for a smooth recovery. Make sure to ask your doctor to set you up with a lymphedema specialist so you can do everything you can during recovery to try and prevent lymphedema or take care of it if it occurs. 

      All the best,

      • July 29, 2016 at 3:38 am
      jennunicorn
      Participant

      Sending good thoughts your way for a smooth recovery. Make sure to ask your doctor to set you up with a lymphedema specialist so you can do everything you can during recovery to try and prevent lymphedema or take care of it if it occurs. 

      All the best,

      • July 29, 2016 at 3:38 am
      jennunicorn
      Participant

      Sending good thoughts your way for a smooth recovery. Make sure to ask your doctor to set you up with a lymphedema specialist so you can do everything you can during recovery to try and prevent lymphedema or take care of it if it occurs. 

      All the best,

        • July 29, 2016 at 1:54 pm
        slh4448
        Participant

        Thank you Jenn…I will definitely ask them about that!!

        Stacy

        • July 29, 2016 at 1:54 pm
        slh4448
        Participant

        Thank you Jenn…I will definitely ask them about that!!

        Stacy

        • July 29, 2016 at 1:54 pm
        slh4448
        Participant

        Thank you Jenn…I will definitely ask them about that!!

        Stacy

      • July 29, 2016 at 9:47 am
      SABKLYN
      Participant

      I elected to do the same almost 5 years ago; left groin.I'm glad I did as it represents the most aggressive option offered at that time.  I dealt with a post-op infection but since then, very few issues.  Virtually zero lymphedema.  Just some residual numbness which appears to be slowly resolving.

       

      good luck Stacy

       

      Stan

      • July 29, 2016 at 9:47 am
      SABKLYN
      Participant

      I elected to do the same almost 5 years ago; left groin.I'm glad I did as it represents the most aggressive option offered at that time.  I dealt with a post-op infection but since then, very few issues.  Virtually zero lymphedema.  Just some residual numbness which appears to be slowly resolving.

       

      good luck Stacy

       

      Stan

      • July 29, 2016 at 9:47 am
      SABKLYN
      Participant

      I elected to do the same almost 5 years ago; left groin.I'm glad I did as it represents the most aggressive option offered at that time.  I dealt with a post-op infection but since then, very few issues.  Virtually zero lymphedema.  Just some residual numbness which appears to be slowly resolving.

       

      good luck Stacy

       

      Stan

        • July 29, 2016 at 1:54 pm
        slh4448
        Participant

        Thank you Stan, I appreciate your feedback and I'm glad to hear that you are doing well. Take care,

        Stacy

        • July 29, 2016 at 1:54 pm
        slh4448
        Participant

        Thank you Stan, I appreciate your feedback and I'm glad to hear that you are doing well. Take care,

        Stacy

        • July 29, 2016 at 1:54 pm
        slh4448
        Participant

        Thank you Stan, I appreciate your feedback and I'm glad to hear that you are doing well. Take care,

        Stacy

      • July 29, 2016 at 1:31 pm
      momof4boys
      Participant
      Hi Stacy, Im glad you decided to go for it! Ive been thinking about you wondering how your appt went. Im definitely sending prayers your way and as long as you lean on God you will always have hope. Once you get this step out of the way you can focus on immunotherapy. You wont start seeing a lymphadema specialist until your drains come out. Mine literally fell out themselves after having them in quite awhile. I guess they were ready. You will have to be careful with that leg since you wont have any lymph nodes there. Scratches and cuts can lead to infection more easily. Besides that im not sure what else to tell you based on my experience. I think you are on the right track, try not to worry and just really enjoy the rest of your summer!

      Rachel

      • July 29, 2016 at 1:31 pm
      momof4boys
      Participant
      Hi Stacy, Im glad you decided to go for it! Ive been thinking about you wondering how your appt went. Im definitely sending prayers your way and as long as you lean on God you will always have hope. Once you get this step out of the way you can focus on immunotherapy. You wont start seeing a lymphadema specialist until your drains come out. Mine literally fell out themselves after having them in quite awhile. I guess they were ready. You will have to be careful with that leg since you wont have any lymph nodes there. Scratches and cuts can lead to infection more easily. Besides that im not sure what else to tell you based on my experience. I think you are on the right track, try not to worry and just really enjoy the rest of your summer!

      Rachel

      • July 29, 2016 at 1:31 pm
      momof4boys
      Participant
      Hi Stacy, Im glad you decided to go for it! Ive been thinking about you wondering how your appt went. Im definitely sending prayers your way and as long as you lean on God you will always have hope. Once you get this step out of the way you can focus on immunotherapy. You wont start seeing a lymphadema specialist until your drains come out. Mine literally fell out themselves after having them in quite awhile. I guess they were ready. You will have to be careful with that leg since you wont have any lymph nodes there. Scratches and cuts can lead to infection more easily. Besides that im not sure what else to tell you based on my experience. I think you are on the right track, try not to worry and just really enjoy the rest of your summer!

      Rachel

        • July 29, 2016 at 1:57 pm
        slh4448
        Participant

        Thank you Rachel,

        I appreciate your response and adding in more things for me to think about. I probably wouldn't have even thought about the leg with scratches and/or cuts. Thanks for that! Takke care,

        Stacy

        • July 29, 2016 at 1:57 pm
        slh4448
        Participant

        Thank you Rachel,

        I appreciate your response and adding in more things for me to think about. I probably wouldn't have even thought about the leg with scratches and/or cuts. Thanks for that! Takke care,

        Stacy

        • July 29, 2016 at 1:57 pm
        slh4448
        Participant

        Thank you Rachel,

        I appreciate your response and adding in more things for me to think about. I probably wouldn't have even thought about the leg with scratches and/or cuts. Thanks for that! Takke care,

        Stacy

      • July 29, 2016 at 5:46 pm
      Happy_girl
      Participant

      My situation seems similar to yours.  Although I did have a dr at memorial Sloan say he didn't feel I needed to get the clnd- I did for my own peace of mind.  Being a new young mom, I wanted to hit this head on- so I did get the clnd.  It went well…. All came back clear!  Mine was under my armpit- but I've had no lymphodema issues- just nerve damage…..which I don't really care about! Anyway- praying for you!! 

      • July 29, 2016 at 5:46 pm
      Happy_girl
      Participant

      My situation seems similar to yours.  Although I did have a dr at memorial Sloan say he didn't feel I needed to get the clnd- I did for my own peace of mind.  Being a new young mom, I wanted to hit this head on- so I did get the clnd.  It went well…. All came back clear!  Mine was under my armpit- but I've had no lymphodema issues- just nerve damage…..which I don't really care about! Anyway- praying for you!! 

      • July 29, 2016 at 5:46 pm
      Happy_girl
      Participant

      My situation seems similar to yours.  Although I did have a dr at memorial Sloan say he didn't feel I needed to get the clnd- I did for my own peace of mind.  Being a new young mom, I wanted to hit this head on- so I did get the clnd.  It went well…. All came back clear!  Mine was under my armpit- but I've had no lymphodema issues- just nerve damage…..which I don't really care about! Anyway- praying for you!! 

        • July 29, 2016 at 7:30 pm
        slh4448
        Participant

        Happy_girl, thank you for your response and glad to hear that everything for you went well. May I ask who your doctor was at Sloan? I ask because even though I have said that I will do the surgery and have a date set, I am going to Sloan for one more opinion. Your doc said no! That makes me a little bit curious. Although you had yours in your armpit whereas mine is located in the groin.

        Stacy

        • July 29, 2016 at 7:30 pm
        slh4448
        Participant

        Happy_girl, thank you for your response and glad to hear that everything for you went well. May I ask who your doctor was at Sloan? I ask because even though I have said that I will do the surgery and have a date set, I am going to Sloan for one more opinion. Your doc said no! That makes me a little bit curious. Although you had yours in your armpit whereas mine is located in the groin.

        Stacy

        • July 29, 2016 at 7:30 pm
        slh4448
        Participant

        Happy_girl, thank you for your response and glad to hear that everything for you went well. May I ask who your doctor was at Sloan? I ask because even though I have said that I will do the surgery and have a date set, I am going to Sloan for one more opinion. Your doc said no! That makes me a little bit curious. Although you had yours in your armpit whereas mine is located in the groin.

        Stacy

        • August 1, 2016 at 3:18 am
        Happy_girl
        Participant

        I talked with dr coit.  He is one of the surgeons.  He said he would be very comfortable if I didn't do the surgery- and encouraged that bc of the little node envolvement.  But still did it bc I'm a worrier :). I pray it goes wonderfully uneventful for you!!!

        i will also add- I am so thankful I went there- wonderfully talented people!!

        • August 1, 2016 at 2:41 pm
        slh4448
        Participant

        Thank you for your response. I too have little node involvement. I had one positive lymph node and all of my scans are clear. Both my surgeon at University of Kansas Hospital and MD Anderson agree that this is the next logical step for me but I am really on the fence about doing it. I do have the surgery scheduled for August 26th so I have some time to do further research and try to get my head right, etc! So my family and I are looking into reaching out to Sloan Kettering for their opinion.

        Stacy

        • August 1, 2016 at 2:41 pm
        slh4448
        Participant

        Thank you for your response. I too have little node involvement. I had one positive lymph node and all of my scans are clear. Both my surgeon at University of Kansas Hospital and MD Anderson agree that this is the next logical step for me but I am really on the fence about doing it. I do have the surgery scheduled for August 26th so I have some time to do further research and try to get my head right, etc! So my family and I are looking into reaching out to Sloan Kettering for their opinion.

        Stacy

        • August 1, 2016 at 2:41 pm
        slh4448
        Participant

        Thank you for your response. I too have little node involvement. I had one positive lymph node and all of my scans are clear. Both my surgeon at University of Kansas Hospital and MD Anderson agree that this is the next logical step for me but I am really on the fence about doing it. I do have the surgery scheduled for August 26th so I have some time to do further research and try to get my head right, etc! So my family and I are looking into reaching out to Sloan Kettering for their opinion.

        Stacy

        • August 9, 2016 at 11:26 pm
        dmturner
        Participant

        I just meant with my oncologist this afternoon.  I was on the fence and still am.  I actually decided to NOT do the clnd of my right groin area.  I told him I would like to go with Yervoy.  I am still reading and going back and forth.  The more I read the more I am not sure which way to go.  First, infusion is scheduled for next Wednesday.  I work on my feet 8 hours a day.  My leg is already a bit swollen from the SNLB I had 2 weeks ago.  Ugh.  Not easy.  I just don't like to read/hear of the side effects from any of this.  Everything started June 10th.  Going so fast.

        I am glad you made your decision.  That is a weight off.

        Best regard, Donna

        • August 9, 2016 at 11:26 pm
        dmturner
        Participant

        I just meant with my oncologist this afternoon.  I was on the fence and still am.  I actually decided to NOT do the clnd of my right groin area.  I told him I would like to go with Yervoy.  I am still reading and going back and forth.  The more I read the more I am not sure which way to go.  First, infusion is scheduled for next Wednesday.  I work on my feet 8 hours a day.  My leg is already a bit swollen from the SNLB I had 2 weeks ago.  Ugh.  Not easy.  I just don't like to read/hear of the side effects from any of this.  Everything started June 10th.  Going so fast.

        I am glad you made your decision.  That is a weight off.

        Best regard, Donna

        • August 9, 2016 at 11:26 pm
        dmturner
        Participant

        I just meant with my oncologist this afternoon.  I was on the fence and still am.  I actually decided to NOT do the clnd of my right groin area.  I told him I would like to go with Yervoy.  I am still reading and going back and forth.  The more I read the more I am not sure which way to go.  First, infusion is scheduled for next Wednesday.  I work on my feet 8 hours a day.  My leg is already a bit swollen from the SNLB I had 2 weeks ago.  Ugh.  Not easy.  I just don't like to read/hear of the side effects from any of this.  Everything started June 10th.  Going so fast.

        I am glad you made your decision.  That is a weight off.

        Best regard, Donna

        • August 3, 2016 at 4:48 pm
        slh4448
        Participant

        Happy_girl….I was wondering if you could tell me how many lymph nodes they took out and biopsied after your SNLB? I only had one removed and it came back positive and you mentioned that since you had little node involvement, that Dr. Coit was comfortable in not recommending the CLND so I'm trying to gauge our similiarities in that regard. Thanks so much, Stacy

        • August 3, 2016 at 4:48 pm
        slh4448
        Participant

        Happy_girl….I was wondering if you could tell me how many lymph nodes they took out and biopsied after your SNLB? I only had one removed and it came back positive and you mentioned that since you had little node involvement, that Dr. Coit was comfortable in not recommending the CLND so I'm trying to gauge our similiarities in that regard. Thanks so much, Stacy

        • August 3, 2016 at 4:48 pm
        slh4448
        Participant

        Happy_girl….I was wondering if you could tell me how many lymph nodes they took out and biopsied after your SNLB? I only had one removed and it came back positive and you mentioned that since you had little node involvement, that Dr. Coit was comfortable in not recommending the CLND so I'm trying to gauge our similiarities in that regard. Thanks so much, Stacy

        • August 1, 2016 at 3:18 am
        Happy_girl
        Participant

        I talked with dr coit.  He is one of the surgeons.  He said he would be very comfortable if I didn't do the surgery- and encouraged that bc of the little node envolvement.  But still did it bc I'm a worrier :). I pray it goes wonderfully uneventful for you!!!

        i will also add- I am so thankful I went there- wonderfully talented people!!

        • August 1, 2016 at 3:18 am
        Happy_girl
        Participant

        I talked with dr coit.  He is one of the surgeons.  He said he would be very comfortable if I didn't do the surgery- and encouraged that bc of the little node envolvement.  But still did it bc I'm a worrier :). I pray it goes wonderfully uneventful for you!!!

        i will also add- I am so thankful I went there- wonderfully talented people!!

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