MRF-Logo2019-Horizontal-RGB
New to the Melanoma Club
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

New to the Melanoma Club

› Forums › Cutaneous Melanoma Community › New to the Melanoma Club

  • Post
    • December 31, 2011 at 3:03 am
    Miss Nancy
    Participant

      Hello everyone,

      Hello everyone,

      I was diagnosed Stage IIIA Melanoma (left foot) following the excision and sentinel lymph node biopsy (SLNB) surgery performed on Oct. 24th. They had removed 2 lymph nodes and one proved positive for micro metastatic melanoma (C-kit). The excision had clean margins and the PET scan was clear. My original surgeon mentioned having a complete lymph node dissection (CLND), but did not push it. She said treatment has come a long way and that it was not necessarily the norm now.  My oncologist recommended 1 year on interferon as my only option.  I live near Orlando and my plastic surgeon recommended that I check out Moffitt in Tampa, so I set up an initial consult. They were pretty insistent on me having the CLND and told me that the cancer drug treatments would be useless without the surgery. At the same time, they thought I should sign up to be in a trial study that compares the outcomes of patients who have the surgery versus those that don't have it. So I guess they have their doubts too! 

      Since the melanoma was on my foot, a plastic surgeon grafted "Integra" (bovine collagen) to provide padding where the shoe will rub. This was performed during the same surgery as the excision and SLNB. Then, he performed a second surgery for a skin graft about 3 weeks later. 

      For the past several years, I have been experiencing edema in the feet, legs and ankles and was prescribed a water pill. Since the first surgery, my left leg, foot and ankle are significantly more swollen from fluid retention than the right foot. This is with only 2 lymph nodes removed. Unfortunatley, the fluids are draining through the excision and the skin graft is spotty at best from being saturated. My plastic surgeon said that we should prep to do another skin graft and referred me to the wound care unit at a local hospital to clean and prep the site for the graft. They think that the graft will fill in if I use a wound vac and compression stocking. They suspected this would take about a month.

      Based on the swelling, I decided not to have the CLND at Moffitt. They then asked if I would consider taking part in the study and I said no because in the study I couldn't choose whether to have the surgery or not. They called me back a couple of days later and recommended a  sonagram be done in mid to late January and if anything was found, a needle biopsy performed at that time. It's pretty clear that they have no intention of treating the cancer unless I permit them to do the surgery first. I'm feeling a bit abandoned by Moffitt.

      A friend recommended MD Anderson here in Orlando and I took a tour and was very impressed. I set up an appointment, but couldn't get in until Jan. 6th because of the holidays. I'm interested in hearing what they have to say.

      Has anyone else elected not to have the lymph nodes removed? I have found studies on the internet comparing outcomes of those who did have the sugery versus those that don't. The summaries stated that there was no significant difference between the two groups and that further studies would be needed. I hope I'm not making a mistake, but I just cannot imagine having my entire leg swollen.

    Viewing 11 reply threads
    • Replies
        • December 31, 2011 at 4:24 am
        JerryfromFauq
        Participant

          I have never been in favor of auomatically having all nodes in a lymph node area removed, certainly one wants the nodes containing melanoma cells removed, but to me it seems reasonable to keep some to help catch any loose cells  in the lymph system.  It is still a somewhat open question as to how effective a CLND is compared to a partial.  I had major surgery to my groin lymph nodes for both the illiac and inquinal chain of nodes and thanks to having had a great surgeon, using massage and keeping my leg elevated when possible after the surgery have had no continuing problem with lymphedema for the 5 years since then.

               Given the problems that you are already having with edema, I can readily understand being leery of doing things that would be expected to make the edema worse.  Have you been reffered to a lymphedema massage specialist to get help reduce the swelling?   

             The contacts that I have had with melanoma patients that went to MDA-Orlando have ben favorable.  I have the imprssion that they do work closely with their conterparts in Texas.  Hope things go well for you.  Lt us know what they have to say for you.

          • December 31, 2011 at 4:24 am
          JerryfromFauq
          Participant

            I have never been in favor of auomatically having all nodes in a lymph node area removed, certainly one wants the nodes containing melanoma cells removed, but to me it seems reasonable to keep some to help catch any loose cells  in the lymph system.  It is still a somewhat open question as to how effective a CLND is compared to a partial.  I had major surgery to my groin lymph nodes for both the illiac and inquinal chain of nodes and thanks to having had a great surgeon, using massage and keeping my leg elevated when possible after the surgery have had no continuing problem with lymphedema for the 5 years since then.

                 Given the problems that you are already having with edema, I can readily understand being leery of doing things that would be expected to make the edema worse.  Have you been reffered to a lymphedema massage specialist to get help reduce the swelling?   

               The contacts that I have had with melanoma patients that went to MDA-Orlando have ben favorable.  I have the imprssion that they do work closely with their conterparts in Texas.  Hope things go well for you.  Lt us know what they have to say for you.

            • December 31, 2011 at 4:24 am
            JerryfromFauq
            Participant

              I have never been in favor of auomatically having all nodes in a lymph node area removed, certainly one wants the nodes containing melanoma cells removed, but to me it seems reasonable to keep some to help catch any loose cells  in the lymph system.  It is still a somewhat open question as to how effective a CLND is compared to a partial.  I had major surgery to my groin lymph nodes for both the illiac and inquinal chain of nodes and thanks to having had a great surgeon, using massage and keeping my leg elevated when possible after the surgery have had no continuing problem with lymphedema for the 5 years since then.

                   Given the problems that you are already having with edema, I can readily understand being leery of doing things that would be expected to make the edema worse.  Have you been reffered to a lymphedema massage specialist to get help reduce the swelling?   

                 The contacts that I have had with melanoma patients that went to MDA-Orlando have ben favorable.  I have the imprssion that they do work closely with their conterparts in Texas.  Hope things go well for you.  Lt us know what they have to say for you.

              • December 31, 2011 at 5:38 am
              Rona
              Participant
                I forgot to mention, soaking your foot in a pool will help move the fluid to make new chanels for the flow. The pressure of the water helps tremendously. Not hot water, like a spa, but about 87 degrees will work.
                Hope this helps
                Rona
                • December 31, 2011 at 5:38 am
                Rona
                Participant
                  I forgot to mention, soaking your foot in a pool will help move the fluid to make new chanels for the flow. The pressure of the water helps tremendously. Not hot water, like a spa, but about 87 degrees will work.
                  Hope this helps
                  Rona
                  • December 31, 2011 at 5:38 am
                  Rona
                  Participant
                    I forgot to mention, soaking your foot in a pool will help move the fluid to make new chanels for the flow. The pressure of the water helps tremendously. Not hot water, like a spa, but about 87 degrees will work.
                    Hope this helps
                    Rona
                    • December 31, 2011 at 4:19 pm
                    Miss Nancy
                    Participant

                      I haven't been referred to any specialist for the lymphadema as of yet. The surgeon and plastic surgeon both said that support hose will help and my plastic surgeon said that moving around will help. I didn't think that I could wear the support hose yet since I still have an open wound on my foot about the size of a quarter, but apparently it is ok.

                       

                      The doctor and nurses at the wound care center at Florida Hospital said it was ok and gave me a pair of T.E.D.s to wear. They sent me down to have a venel doppler first to make sure that I didn't have any clots then gave me the ok to wear the stocking. This was mainly because of my pre-existing edema.

                      It's an interesting challenge trying to put them on, especially with a bandaged hole in the side of my foot. LOL. I'll have to get measured and pick up some more, but I'll wait for now. They are going to put a wound vac on my foot and the drain tubing will come out a hole in the toe area. I'm not sure how strong a stocking to use in conjunction with the drain tubing.

                      I have to give a big shout out for the doctors, nurses and staff at the wound center at Florida Hospital Orlando. They are fantastic!

                      I'll try a soak in the tub, but I need to pick up some opsite or something to seal the wound first.

                      Thanks everyone for the information.

                      • December 31, 2011 at 4:19 pm
                      Miss Nancy
                      Participant

                        I haven't been referred to any specialist for the lymphadema as of yet. The surgeon and plastic surgeon both said that support hose will help and my plastic surgeon said that moving around will help. I didn't think that I could wear the support hose yet since I still have an open wound on my foot about the size of a quarter, but apparently it is ok.

                         

                        The doctor and nurses at the wound care center at Florida Hospital said it was ok and gave me a pair of T.E.D.s to wear. They sent me down to have a venel doppler first to make sure that I didn't have any clots then gave me the ok to wear the stocking. This was mainly because of my pre-existing edema.

                        It's an interesting challenge trying to put them on, especially with a bandaged hole in the side of my foot. LOL. I'll have to get measured and pick up some more, but I'll wait for now. They are going to put a wound vac on my foot and the drain tubing will come out a hole in the toe area. I'm not sure how strong a stocking to use in conjunction with the drain tubing.

                        I have to give a big shout out for the doctors, nurses and staff at the wound center at Florida Hospital Orlando. They are fantastic!

                        I'll try a soak in the tub, but I need to pick up some opsite or something to seal the wound first.

                        Thanks everyone for the information.

                        • December 31, 2011 at 4:19 pm
                        Miss Nancy
                        Participant

                          I haven't been referred to any specialist for the lymphadema as of yet. The surgeon and plastic surgeon both said that support hose will help and my plastic surgeon said that moving around will help. I didn't think that I could wear the support hose yet since I still have an open wound on my foot about the size of a quarter, but apparently it is ok.

                           

                          The doctor and nurses at the wound care center at Florida Hospital said it was ok and gave me a pair of T.E.D.s to wear. They sent me down to have a venel doppler first to make sure that I didn't have any clots then gave me the ok to wear the stocking. This was mainly because of my pre-existing edema.

                          It's an interesting challenge trying to put them on, especially with a bandaged hole in the side of my foot. LOL. I'll have to get measured and pick up some more, but I'll wait for now. They are going to put a wound vac on my foot and the drain tubing will come out a hole in the toe area. I'm not sure how strong a stocking to use in conjunction with the drain tubing.

                          I have to give a big shout out for the doctors, nurses and staff at the wound center at Florida Hospital Orlando. They are fantastic!

                          I'll try a soak in the tub, but I need to pick up some opsite or something to seal the wound first.

                          Thanks everyone for the information.

                          • December 31, 2011 at 4:20 pm
                          Miss Nancy
                          Participant

                            I haven't been referred to any specialist for the lymphadema as of yet. The surgeon and plastic surgeon both said that support hose will help and my plastic surgeon said that moving around will help. I didn't think that I could wear the support hose yet since I still have an open wound on my foot about the size of a quarter, but apparently it is ok.

                             

                            The doctor and nurses at the wound care center at Florida Hospital said it was ok and gave me a pair of T.E.D.s to wear. They sent me down to have a venel doppler first to make sure that I didn't have any clots then gave me the ok to wear the stocking. This was mainly because of my pre-existing edema.

                            It's an interesting challenge trying to put them on, especially with a bandaged hole in the side of my foot. LOL. I'll have to get measured and pick up some more, but I'll wait for now. They are going to put a wound vac on my foot and the drain tubing will come out a hole in the toe area. I'm not sure how strong a stocking to use in conjunction with the drain tubing.

                            I have to give a big shout out for the doctors, nurses and staff at the wound center at Florida Hospital Orlando. They are fantastic!

                            I'll try a soak in the tub, but I need to pick up some opsite or something to seal the wound first.

                            Thanks everyone for the information.

                            • December 31, 2011 at 4:20 pm
                            Miss Nancy
                            Participant

                              I haven't been referred to any specialist for the lymphadema as of yet. The surgeon and plastic surgeon both said that support hose will help and my plastic surgeon said that moving around will help. I didn't think that I could wear the support hose yet since I still have an open wound on my foot about the size of a quarter, but apparently it is ok.

                               

                              The doctor and nurses at the wound care center at Florida Hospital said it was ok and gave me a pair of T.E.D.s to wear. They sent me down to have a venel doppler first to make sure that I didn't have any clots then gave me the ok to wear the stocking. This was mainly because of my pre-existing edema.

                              It's an interesting challenge trying to put them on, especially with a bandaged hole in the side of my foot. LOL. I'll have to get measured and pick up some more, but I'll wait for now. They are going to put a wound vac on my foot and the drain tubing will come out a hole in the toe area. I'm not sure how strong a stocking to use in conjunction with the drain tubing.

                              I have to give a big shout out for the doctors, nurses and staff at the wound center at Florida Hospital Orlando. They are fantastic!

                              I'll try a soak in the tub, but I need to pick up some opsite or something to seal the wound first.

                              Thanks everyone for the information.

                              • December 31, 2011 at 4:20 pm
                              Miss Nancy
                              Participant

                                I haven't been referred to any specialist for the lymphadema as of yet. The surgeon and plastic surgeon both said that support hose will help and my plastic surgeon said that moving around will help. I didn't think that I could wear the support hose yet since I still have an open wound on my foot about the size of a quarter, but apparently it is ok.

                                 

                                The doctor and nurses at the wound care center at Florida Hospital said it was ok and gave me a pair of T.E.D.s to wear. They sent me down to have a venel doppler first to make sure that I didn't have any clots then gave me the ok to wear the stocking. This was mainly because of my pre-existing edema.

                                It's an interesting challenge trying to put them on, especially with a bandaged hole in the side of my foot. LOL. I'll have to get measured and pick up some more, but I'll wait for now. They are going to put a wound vac on my foot and the drain tubing will come out a hole in the toe area. I'm not sure how strong a stocking to use in conjunction with the drain tubing.

                                I have to give a big shout out for the doctors, nurses and staff at the wound center at Florida Hospital Orlando. They are fantastic!

                                I'll try a soak in the tub, but I need to pick up some opsite or something to seal the wound first.

                                Thanks everyone for the information.

                            Viewing 11 reply threads

                            Tagged: 

                            • You must be logged in to reply to this topic.
                            About the MRF Patient Forum

                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                            Popular Topics