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.

Recent dx metastatic malignant melanoma

Forums Cutaneous Melanoma Community Recent dx metastatic malignant melanoma

  • Post
    aweatherred
    Participant
      I’m a 61 year old registered nurse with recent diagnosis of Metastatic Malignant Melanoma
      In November 2018 I had small lesion excised in my surgeon’s office, pathology report came back malignant melanoma w 1 mm margins, Subsequent PET scan was essentially negative, with the exception of site of excision. Wide local excision and sentinel lymph node biopsy performed, negative for residual melanoma (incidental benign lentigo of skin) the surgical margins were clear and sentinel lymph node was negative for tumor.
      Fast forward to July 1st of this year I noted a painful nodule in left groin (previously biopsied SLN bx site in November 2018) Excision performed revealing metastatic malignant melanoma – 4.5 cm.
      I was so taken back with these findings as I truly thought I had scathed any metastasis. I am currently awaiting PET scan and appointment w/ oncologist this week
      I am anxiously awaiting a plan of treatment, a few days seems like an eternity. Can you all share your experiences and what I have to look forward to in regards to treatment and expectations regarding these new findings.
      I’ll add my post op was eventful, as both the incision of WLE and SLN biopsy required bid packing for several weeks r/t nonhealing wound.

      Loading spinner
    Viewing 3 reply threads
    • Replies
        Bubbles
        Participant
          Sorry you are dealing with this. Melanoma is certainly a crazy ride but there is hope. This board is filled with many caring and knowledgeable peeps. This post should be a good starting point for you regarding current treatment options if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

          Ask more questions as you need and as you learn more about your condition. I wish you my best. Celeste

          Loading spinner
            aweatherred
            Participant
              Thanks Celste! Very good and informative post, I’m so full of questions, and not quite sure what questions to ask! Look for more to come after my oncology visit!

              Loading spinner
            MelanomaMike
            Participant
              Hi aweatherred, thank you for sharing and welcome to MRF! Not sure if this is your first post. Like yourself, having found that our terrible disease has managed to set up shop in our lymphnodes is horrorfying, like you, in 2008 my left groin was positive and had a surgery, i forget the node count but my surgeon really created a wide margin of tumor free area, very nice scar ill tell ya that!
              Were behind you sis, immunal therapy might just be in your near future once they test for BRAF, that alone points your team to what may work the best for you, maybe even just simple surgerys and watch and wait! Keep us posted!

              Loading spinner
                aweatherred
                Participant
                  Hey Mike! Thanks for replying, I was really hoping this was all behind me last November w/ the negative lymph nodes negative margins (and I’m with ya with that wide local excision!!) I’m thankful I work w/ a very skilled surgeon, and have a close relationship with the oncology office that we refer to as well.
                  Tell me about your immunotherapy, how was the dosing? PO, injection? How about your response/side effects? I’m currently out on leave, not sure what to expect., back to work/time to heal, side effects etc
                  I’m somewhat of a control freak, and I’m used to driving that bus, not a passenger kind of girl!
                  Thanks for the words of encouragement, I think I’m over the initial shock, now i’m ready to get things going!

                  Loading spinner
                MichelleRHG
                Participant
                  I had a mel removed and it returned 6 years later in a groin node. It was large, also. The local surgeon who did my WLE years before removed the node along with 10 others in the area. A couple weeks later I went to MD Anderson for a consult and the melanoma surgeon there said if it had been her, she would have removed pelvic nodes as well since the groin node was so large. Sure enough, a couple months later it showed up in pelvic node. I know research doesn’t necessarily support the removal of so many lymph nodes but had I known what was to come I would have insisted they be out right away. The MDA surgeon ended up removing my pelvic nodes on that side and did acknowledge that with immunotherapy there are choices other than radical surgery for melanoma, unlike just a few years ago. You can read my profile and see that it then went to a pulmonary lymph node and we are now watching “stuff” in my lung. Good luck to you!

                  Loading spinner
                  aweatherred
                  Participant
                    Well, PET revealed 3 more nodes… #1 1.7cm x 1.6 cm left inguinal/upper thigh, #2 medial left upper thigh 1/1 cm x 1.0 cm and # 3 left upper thigh 09 x 0.7 cm. I assume I’m up for another surgical procedure. Oncologist was unhappy that pathology did not include Caiden’s (sp?) she is requesting pathology send for additional testing, and to return in 3 weeks. Pretty devastated that I have to wait so long for results. Will be discussing PET w/ surgeon on Monday. So unclear about treatment

                    Loading spinner
                Viewing 3 reply threads
                • 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.