New to the Melanoma Club

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.