New to Melanoma 1/25/18 and Surgery 2/5/18
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 Melanoma 1/25/18 and Surgery 2/5/18

› Forums › General Melanoma Community › New to Melanoma 1/25/18 and Surgery 2/5/18

  • This topic has 8 replies, 6 voices, and was last updated 8 years ago by Raco.
  • Post
    • February 21, 2018 at 9:05 pm
    Raco
    Participant

    I did a first post but picked Anonymous by mistake so I have reposted.

    Hi, Really would appreciate some feed back:

    I was diagnosed with melanoma on my left flank on January 25th, T1a Stage II

    5 days later I was in the Surgeons office and he discussed that we  Remove the Melanoma 2mm and to  do a SLNB to determine if the cancer had reached the lymph nodes.

    On February 5th, Surgery. SLNB was removed than the Melanoma.

    Results in two days.                                                                                                                                    Melanoma site was all clear around the Margins,  However, they found Microscopic cancer cells in two lymph nodes that they removed. N1a Stage III

    Next,,,, 9 days later I met with Dr Alberico Oncologist, Virginia Oncology. He has me scheduled for two test.

    1. Brain MRI

    and

    2. Pet Scan to see if I light up anywhere.

    If All is clear, I will go back to Surgery on March 12th and they want to remove additional nodes and place a drainage in.

    Kinda just looking for others that may have experienced similar situations and Whats the word about having your lymph nodes removed.

    Thanks for your input.

    Robbie

    _____________________________________________________________________________________Re: New to Melanoma and Surgery ktode10910 – (2/21/2018 – 12:38pm)

    HI Robbie,

    I think that all sounds exactly correct for treatment from where you are and out.  Those were all the same tests I had for my original Stage III.  LIkely, they will recommend a treatment course as well.  I had many lymp nodes removed with my original diagnosis (mine has now recurred ten years later back to my lymph system) so if they can take them–take them!  I did well with that surgery.  It did leave me with lymphadema in my left leg (as my original melanoma was in my left groin) so I do have swelling in that leg that can be managed by a stocking when needed but really isn't anything that affects my daily life.  My drain did get infected with my first surgery all those years ago, but maybe they are better now.  It was a simple cellulitis that was easily treated. 

    I hope that helps and best of luck–it sounds like your oncologist is right on track for exactly what I've seen before and would be recommended.  Just don't be surprosed if they add in a medicinal treatment option as well.

Viewing 2 reply threads
  • Replies
      • February 22, 2018 at 8:30 pm
      Bradley75
      Participant

      Robbie,

      I had a complete lymph node dissection (CLND) of my right axilla after a reoccurrence in a lymph node back in May of 2015.  34 nodes were removed and 2 had cancer in them.  I stayed clear for about a year.  It then showed up as mets in my lungs, back, and even a little tumor near my kidney.  In 2015, CLND was the recommended option by my onc and even the second opinion I got back then.  In 2018, CLND might not be the best option.  I would never even consider another CLND with the advancements in immune therapy.  Pembro, NIVO, IPI/NIVO combo, and a whole bunch of trials might be a better option for you to at least consider.  I had the nodes removed and the cancer spread anyway. 

      Since my original CLND, I have had 5 more surgeries, one dose of the combo, and 15 doses of Keytruda.  I am back to NED.  Of all the surgeries I have had, the CLND had to worst lasting effects.  I have lymphedema in my right arm and it is a pain in the booty.  The swelling makes cellulitis a real problem and both times I got it I ended up in the hospital for 5 days each time.  That CLND didn't prevent any of my other surgeries and left me with a swelling issue. 

      I don't regret the decision I made to have CLND back in 2015 because it was my best option based on all the facts I gathered.  Please make sure that you are at ease and confident with whatever you decide. 

      Brad

        • February 23, 2018 at 8:06 pm
        gopher38
        Participant

        Brad,

        Just wanted to say that I admire your clear thinking analysis, in saying, in retrospect, decision A was a mistake (in this case, the CLND), but it was the right decision at the time.  And, you know, maybe you're wrong about that too (thinking decision A was a mistake), and only future info will reveal that.  You never know, but you make your decision, and then don't beat yourself up with second-guessing. Most people (myself included) wouldn't be that sage.

      • February 24, 2018 at 12:09 am
      ed williams
      Participant

      Hi Raco, you might want to read up on CLND and give a copy of the New England Journal of Medicine to your Oncologist so that he can get up to date as well. Here are two links that you should really consider before taking out any more nodes!!!http://www.nejm.org/doi/full/10.1056/NEJMoa1613210   https://www.youtube.com/watch?v=p_T186r5gIE

      • February 24, 2018 at 3:11 am
      MelanomaMike
      Participant

      Hi Raco, a pleasure to make your aquaintance {under our awful circumstances! so so awful, poor us, the chosen few lol..

                         Ya man, im right with you,my lymphnodes in my "Left Groin" where also inhabited years ago by the lurking Melanoma {not my primary}, had a biopsy, positive result {stage 3b} then surgery, drain bag with tube, measuring cup, log book, very hands on til my body began to absorb its own drainage on its own without "my" help haha…Swelling will most likely occur most yer life, like folks have said or will say, wear yer "tights" {leg compression} wich i never really did, to hot & itchy, but it will help, youll get more swelling at days end. Keep yer leg "elevated" as much as you can in each day. Well Raco, welcome to your new family, even though surgeries will happen, Chemo/Immunal {etc}. therapies will happen in your life, NEVER count on a full recovery or a "Cure", for we can ONLY hope for longevity & quality of life, this is all i have for a new comer that will help you, There are "others" here that will help you with Medical Translation of report findings, opinions on treatment options etc. because they take the time to "Learn" {or have the ability rather} and have a willing to share & help us brothers & sisters who are the lucky ones with Melanoma. Your in good hands with MRF….

         Good luck & will chat again im sure…Mike

        • February 24, 2018 at 1:16 pm
        dessie
        Participant

        Good Morning Robbie,

        After reading everyone's input, all sounds like great advice and sincere input.  I will add to the bunch.  I am laying in bed after having right groin lymph CLND vs sonography and wait and see.  My surgery was Feb 8, it is now Feb 24 and I still have my sutures and drain.  This will come out Feb 27 regardless of how much drainage has accumalated.  I have been out of work since Feb 8 but will return to work March 5.  My upper tihgh swells a bit despite the drain in place however we weighed all our options with our deciscion.  Our decision was CLND.  So far , yes a big PITA however, I am here, I have planned Opdivo follow up treatment , and the rest of my lymph nodes, thank God , were all negative.  

        This is a decision that only you and your family can make your choice.  And thank God you HAVE a choice.  

        Good luck to you and your new journey ahaed.  Believe me, this forum has been a God send to me and I am sure we will hear back from you either way. 

        Dessie

        • February 27, 2018 at 5:26 pm
        Raco
        Participant

        Dessie,

        I wish you the best and so glad the rest of the lymph notes came back Neg. I sure that lifted much off your shoulders. 

        The thing that I am so unsure about the CLND is that I have two Special Needs Girls that require a whole lot of lifting and my wife has a Real Hard time lifting. So I know if I have the CLND I will need alot of healing time but Have you heard about the Functional use ( my left arm in my situation) after healing. Will I have full function or Limited?

        I also understand that having the CLND is all dependent on what happens with my Brain MRI and PET Scan the end of this week.  ( all clear or not) and what the Oncologist suggest. 

        Just trying to cover my questions so I can make a informed decision and yes, I agree, this forum if truly a GOD send. 

Viewing 2 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.

Popular Topics