Home Forums Newly Diagnosed Stage III/IV facing a lymphadenectomy

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  • #21533
    charissa1969
    Participant

    Hi. I’ve been reading posts for the last few weeks since my melanoma diagnosis. I had a WLE on my left calf and an SNB on my left groin area last week. I received the call today that cancer had been found in the sentinel lymph node. I am going to my surgeon tomorrow to discuss the lymphadenectomy. I had somewhat prepared myself for this possibility but now feel a bit overwhelmed by it all. I would appreciate any advice on what to expect from the surgery such as side effects, recovery time, etc. and your perspective on how effective this surgery is in preventing the cancer from spreading. Just a bit about me…I am 44, been married for almost 20 years, and have 3 girls (15, 13, and 10) that I homeschool. Up until today, I have worked part time as a college math instructor. I believe that the events of my life are not random, and I have a strong support system of family and friends. Thank you in advance to everyone for giving their time to help me.

    #62246
    Catherine Poole
    Keymaster

    I’m sure this is a stressful time for you. I have some questions for you: how deep was your lesion? And was the node micro or macro invaded? Where are you going for therapy? There are options, and research is important for you.

    #62247
    charissa1969
    Participant

    I’ll ask the surgeon the questions you posed tomorrow. My surgeon is McMasters with the Brown Cancer Center in Louisville, KY and his specialty is melanoma. Thank you for your reply.

    #62248
    Annieo
    Participant

    Hi Charissa,

    I understand that this is an overwhelming time for you. I was exactly where you are now, last January. I hope I can help put your mind at ease.

    To inject some positivity into your situation Charissa, I can tell you that, for me, eight months down the line, post lymphadenectomy, things have got somewhat back to normal. Life has returned to a slower pace and I can stand back from the melanoma diagnosis and surgery experience. I understand that it is probably very hard for you, at present, to believe that you will ever see the day that you can put this nightmare behind you.

    I am a teacher also, 41 years of age, no children. I have Rheumatoid Arthritis which is preventing me from going back to work right now, but if my arthritis was not in the equation I think I would be ready to go back to work now, or if not right now, very soon. There was a time where I couldn’t imagine any future for me. I didn’t have confidence in anything at that time. I think that is an understandable response to the shock of a melanoma diagnosis. Thank God I no longer feel like this, emotionally. I am now looking forward, with much more appreciation, to enjoying my life, spending time with those who are most important to me and also by doing things that I love and have always dreamt of doing. (Sorry, I am getting carried away!)

    For sure, you will go through the build up to the surgery. This is not an easy time, I know. I will be thinking of you … I would advise you to try and distract yourself and try to put the surgery out of your mind. I taught myself to do ‘denial’ very well! Do some fun things. Be with people who make you happy … Next, you will have the surgery and get through it. That speaks for itself. It is nothing to worry about. (Hindsight is a great thing!) I had knee surgery last summer and the recovery was much more painful and took much longer than the recovery for the melanoma groin dissection.

    For me, the biggest challenge throughout, was the emotional stuff. I would do the surgery all over again if I had to. I think I would feel much easier about it. Make sure you are well looked after by the hospital staff. It is wonderful that you have so much support in your family and friends. You deserve some T.L.C. Ask all the question you need to ask and speak up if you are unsure or worried about anything. And, of course, don’t do stress! – let that to everybody else! :)

    Unlike you, I did not check out forums or do much research. This was completely unlike me because I love to google! At the time, I found that I could only focus on the now. You will probably be better equipped than me in that sense. My sister did lots of googling and tried to push information and her concerns on me. I did not want to know, at the time. That was my way of coping.

    My advice to you would be to bear in mind that how you feel right now is all part of your response to the uninvited and unexpected diagnosis, that is melanoma. The unfamiliarity of it, and the fear it brings with it, can magnify thoughts and emotions.

    There are much better days to come for you :) . Keep the faith and the chin up. I wish you much peace and comfort at this time.

    Anne

    #62249
    Linny
    Participant

    Sorry to hear you’re going through this stressful time right now. It is overwhelming at the start, but trust me, things will slow down to normal.

    Make sure you discuss post-lymphadenectomy care with your doctor and get a reference from him or her for a physical therapist who specializes in lymphedema. Without those lymph nodes present in your left groin you will be at risk for swelling in your left leg. The physical therapist will give you tips on what you can do to prevent it or to keep it to a minimum. Lymphedema just seems like adding insult to injury but keep in mind that it’s a manageable condition. At minimum you will need a compression garment/stocking for that leg to use during airline travel or on occasions where you know your leg will swell. The therapist will be able to fit you with one. But you will need a prescription for that garment from your doctor.

    Please stay in touch and let us know how you’re doing.

    #62250
    charissa1969
    Participant

    Thank you, Annieo and Linny.

    You have no idea how much I needed to hear what you had to say. I met with the surgeon today, and he scheduled the surgery for this coming Monday. I have spent the rest of the day with a knot in my stomach. I have always been very active and I truly thought that this is the end of that for me. Your words encouraged me so much. I am being fitted for a compression sleeve tomorrow so that I have it the day of surgery. I will ask for the referral to a therapist; thank you for the recommendation. Lymphadema is the main thing that just scares the pants off me (and recurrence) so anything you’ve found that has helped, I would love to hear it. Again, thank you so much for replying; I am very grateful.

    #62251
    Catherine Poole
    Keymaster

    charissa,

    Did you find out if you had micro or macro mets? You may not need a complete node dissection if it is micro. You should consider a second opinion at a melanoma center. I know you are moving forward, but there could some research to do yet as to whether it is truly needed. Sometimes surgeons do a partial lymph node removal which results in less lymphedema.

    #62252
    Linny
    Participant

    It’s good that you’re starting off right away with that compression stocking. Getting the compression garment on is a pain in the butt. But once it’s on it’s comfortable and feels pretty good, actually.

    My neighbor has lymphedema in one of her legs as a result of cancer surgery she had years ago. She is active for her age and gets around with few problems. She does have to wrap her leg and uses a pump. But the keyword is that she’s active. Also, I think that at the time she got it, doctors and therapists weren’t as savvy about how to manage it as they are now.

    The statistics as to whether or not you’ll get lymphedema are confusing because the percentages as to whether or not people will get it vary a lot so I would take them with a grain of salt. What two doctors told me was that the longer you can go without it appearing, the chances are that you’ll get it decrease. Ditto for the melanoma returning.

    Your at-risk limb will be more prone to infection from cuts, scratches, bug bites, etc., due to the impeded flow of lymph fluid. What you’ll need to always have with you are bandaids and a topical antibiotic. You’ll also need to learn the signs of infection and if you notice that an open cut or scratch is getting infected, you’ll need to get to an emergency room. I’ve scratched my at-risk arm and so far, so good. I tend to the wound immediately and keep it clean and covered until a scab forms.

    #62253
    charissa1969
    Participant

    Catherine,

    The snb showed a 1.1 mm area of cancer (the Breslow depth of the original tumor was 1.4 mm) which the surgeon said is considered micro but, as he termed it, “real” cancer. My surgeon specializes in melanoma and participates in trials concerning snb and clnd. He gave me options of doing nothing, surgery, or a trial. I asked questions about all 3 options and also about surgical procedure (like femoral or pelvic lymphadenectomy and if the saphenous vein would be spared). His answers showed he is for minimal invasion so I feel more comfortable about the decision to do the surgery. What do you think?

    Linny, I have a question about the compression sleeve I bought today. The thick band around the top sits right where my snb incision is (which will be where they will go back in). How does this work with the drains? And wouldn’t it hurt the incision site? If I’m overthinking this, please let me know. :) It tends to be my way of coping. But overall, feeling much better since reading your posts (and Annie’s). Thank you.

    #62254
    Catherine Poole
    Keymaster

    There is some controversy as to whether a full lymphadenectomy is needed when there is micro invasion. A partial lymph node dissection is possibly less invasive and just as effective. It is still under study. I did check your surgeon’s background and he does seem well trained. So I wish you well. Physical therapy can also help offset the lymphedema.

    #62255
    Linny
    Participant

    charissa1969 wrote:

    Linny, I have a question about the compression sleeve I bought today. The thick band around the top sits right where my snb incision is (which will be where they will go back in). How does this work with the drains? And wouldn’t it hurt the incision site? If I’m overthinking this, please let me know. :) It tends to be my way of coping. But overall, feeling much better since reading your posts (and Annie’s). Thank you.

    Your surgeon will best be able to answer that question. They may give you compression stockings to wear anyway. I had to put them on prior to my lymphadenectomy and my surgery took place in the axilla. These stockings came to the knee.

    I would advise against buying any compression garment off the shelf. Believe it or not, they come in different lengths and strengths. In our case, we need to be measured by a trained professional for one of these garments so we get the correct amount of compression. Too much compression and/or too little compression is not good for us.

    You’re going to do just fine with the surgery.

    #62256
    goldfidler
    Participant

    First of all, thank you to everyone for sharing their thoughts on this post. I was referred to this post from another site, after I had posted some comments. As per the attached posted, I would appreciate any comments or advice from the group. I am very new to this and just trying to seek advice from others who have been or are going through the same. Thank you. Matt

    http://www.melanoma.org/community/mpip-melanoma-patients-information-page/am-i-crazy-newly-diagnosed-stage-iiic-needs-advice

    ORIGINAL POST

    42-year old male. Stage IIIC, pT4b, pN2b, Mx.

    Otherwise healthy and energetic. No symptons or signs of illness.

    Eight weeks ago, I went to the doctor expecting to get a prescription for penicillin for an infection on my right foot and was eventually diagnosed with Stage IIIc melanoma in the bottom of my foot. After several several MRIs, CAT scans, and a PET scan, it was determined that the melanoma did not spread to my liver, lungs, or other major organs.

    11 days ago, I received a Transmetatarsal amputation (TMA) on my right foot. At the same time, I received a Sentinel Node Biopsy (SNB) on my right groin. I just learned that 3 of 5 nodes were positive.

    Yesterday, the doctor recommended that I get a groin dissection on my right thigh. Once this is completed, then he would recommend me for a trial study, probably interferon.

    HERE IS MY QUESTION

    I would like to hear from others with melanoma who have had positive SNBs. Does everyone simply then progress to having the groin dissection? I am crazy to not get the groin dissection? I am crazy to not want to move forward with the trial with interferon? What other options are out there?

    It has literally been less than 24 hours for me to process this information so I am still in that manic decision state. I am scheduled for the groin dissection on Sept 11th but am seriously considering not having this operation. My foot is still healing from the TMA. My inner thigh is still healing from the SNB. Other than these surgeries, I have high energy levels and zero symptons of sickness. From what I have read and been told, the groin dissection does not necessarily guarantee anything, other than lymphoedema and a longer physical recovery. And I don’t have to explain interferon to this group.

    I would truly appreciate any and all comments about your thoughts on my situation.

    Thank you very much,

    Matt

    #62257
    Annieo
    Participant

    Hi Charissa,

    I’m glad you are feeling a bit better in yourself.

    I did not have a compression garment in the hospital. I only had the regular post-surgery stockings. As I’ve said already, my surgeon told me that I didn’t need to worry about lymphedema for a few weeks after the surgery. (I don’t know what truth there is in that but I chose to worry regardless) What he did say to me while in hospital was that if sitting out, I needed to elevate the leg.

    I got my first compression garment after the bandages were removed. I got support tights. There are all kinds of compression garments to choose from. At the moment I wear the ones with the band across the upper thigh, similar I think to the one you described. I can’t imagine you will be able to (or need to) wear a compression garment immediately post surgery. I definitely don’t think you will need to be concerned while the drains are in. They will already be taking care of the fluid while they are in. Ask whoever suggested or fitted your garment, when you are supposed to wear it. It is probably for when you go home.

    Try not to worry too much and be kind to yourself. Lap up the attention and keep yourself strong for the surgery.

    Best wishes, Anne

    #62258
    Linny
    Participant

    goldfidler wrote:

    First of all, thank you to everyone for sharing their thoughts on this post. I was referred to this post from another site, after I had posted some comments. As per the attached posted, I would appreciate any comments or advice from the group. I am very new to this and just trying to seek advice from others who have been or are going through the same. Thank you. Matt

    http://www.melanoma.org/community/mpip-melanoma-patients-information-page/am-i-crazy-newly-diagnosed-stage-iiic-needs-advice

    ORIGINAL POST

    42-year old male. Stage IIIC, pT4b, pN2b, Mx.

    Otherwise healthy and energetic. No symptons or signs of illness.

    Eight weeks ago, I went to the doctor expecting to get a prescription for penicillin for an infection on my right foot and was eventually diagnosed with Stage IIIc melanoma in the bottom of my foot. After several several MRIs, CAT scans, and a PET scan, it was determined that the melanoma did not spread to my liver, lungs, or other major organs.

    11 days ago, I received a Transmetatarsal amputation (TMA) on my right foot. At the same time, I received a Sentinel Node Biopsy (SNB) on my right groin. I just learned that 3 of 5 nodes were positive.

    Yesterday, the doctor recommended that I get a groin dissection on my right thigh. Once this is completed, then he would recommend me for a trial study, probably interferon.

    HERE IS MY QUESTION

    I would like to hear from others with melanoma who have had positive SNBs. Does everyone simply then progress to having the groin dissection? I am crazy to not get the groin dissection? I am crazy to not want to move forward with the trial with interferon? What other options are out there?

    It has literally been less than 24 hours for me to process this information so I am still in that manic decision state. I am scheduled for the groin dissection on Sept 11th but am seriously considering not having this operation. My foot is still healing from the TMA. My inner thigh is still healing from the SNB. Other than these surgeries, I have high energy levels and zero symptons of sickness. From what I have read and been told, the groin dissection does not necessarily guarantee anything, other than lymphoedema and a longer physical recovery. And I don’t have to explain interferon to this group.

    I would truly appreciate any and all comments about your thoughts on my situation.

    Thank you very much,

    Matt

    Hi Matt,

    Unfortunately there’s not much that’s been FDA approved for Stage III melanoma patients. At Stage IIIC there are more trials open to you than there are for those of us at Stage IIIA/B. You may end up having to travel to a facility that is sponsoring the trial you’re interested in.

    I agonized over a lymphadenectomy as well. I had only one axillary node test positive and I’m glad I had the rest of them removed. Fortunately the rest were all clean and that was a huge relief. I’d read a few studies on the procedure and when I saw the term “potentially curative” associated with it, I didn’t feel so bad about having had it done.

    You had 3 of 5 nodes test positive. Not to put the fear of God in you, but it’s still possible that there’s more melanoma lurking in the rest of the nodes in that area. Why not take the rest of them out and remove all doubt?

    Lymphedema definitely is a risk, but it’s a manageable condition. Melanoma has yet to reach that designation.

    #62259
    Catherine Poole
    Keymaster

    Matt, it is no picnic, but sounds like you should have the lymph node dissection and if they find nodes with melanoma and remove them, that does affect your prognosis. I would suggest you get another opinion perhaps at UPENN, 800-789-Penn. Douglas Fraker is an excellent surgical oncologist there and expertise does matter. They have more clinical research going on there as well. It may be worth the travel. I hope all goes well for you. And in case you haven’t seen it, we did post a study by Dr. Chapman from Sloan on interferon. The gist of it is, interferon may delay recurrence but the side effects for the short duration may not be worth it. Overall survival is not increased by interferon. There are lots of things coming along, we hope soon!

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