Home Forums Melanoma: Stage III Compete node dissection on August 29th

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  • #20558
    GaylaB
    Participant

    PET came back ALL CLEAR!

    But since 1 node tested positive for micro cell ( uncertain if melanoma or nevus) Dr suggested complete dissection

    If you have experienced this, please let me know what to expect.. My insurance will only cover 1 nights stay unless Dr can find reason to stay longer, it’s a 150 mile drive from hospital to home- gonna be a rough trip I imagine.

    Keeping the faith

    Got to stay strong for my husband and 6 year old son!

    Gayla

    #55947
    washoegal
    Participant

    Gayla,

    Many of us have had that procedure. I think much depends on you tolerance for pain/discomfort and by now you should know that. If you have had any problem with general anesthesia (nausea) I’d suggest getting a motel for one night. That and of course the dreaded drains were really my biggest complaints. The surgery really wasn’t bad. Make sure your husband gets the information on how to maintain the drain because you may not remember.

    Mine was under the arm and it helped to keep the arm propped with a pillow at night. Where will your CLND be? I think that makes a difference.

    Good Luck,

    Mary

    P.S.

    I had 2 micro-mets though the surgery is controversial for one, it will give you peace of mind.

    #55948
    GaylaB
    Participant

    Mine will be in the groin area, right side.

    My WLE is about an inch above my knee on the side of my right leg- I had a lot of pain with the WLE and SNB for about 4 days then it became bearable.

    It felt like a flame was on the surgical site.

    I am glad to hear you tolerated it well! That gives me hope.

    I am very healthy and active – I have been on Bill Henderson diet, Levive nutrionals and Essiac tonic since my diagnosis on July 12- Levive I have taken way longer as it was already part of my lifestyle. And I also substitute 1 meal a day with the organic cottage cheese and Barleans flax seed oil.

    Any suggestions on building immune system up any more than I am already?

    Gayla

    Stage III

    KEEPING THE FAITH!

    #55949
    Catherine Poole
    Keymaster

    Exercise and meditation are the most proven “alternative” therapies. I would make sure you can be enrolled in a physical therapy program after the node dissection. This tends to help with the inflammation and other difficulties that arise.

    #55950
    Linny
    Participant

    GaylaB wrote:

    Mine will be in the groin area, right side.

    My WLE is about an inch above my knee on the side of my right leg- I had a lot of pain with the WLE and SNB for about 4 days then it became bearable.

    It felt like a flame was on the surgical site.

    I am glad to hear you tolerated it well! That gives me hope.

    I am very healthy and active – I have been on Bill Henderson diet, Levive nutrionals and Essiac tonic since my diagnosis on July 12- Levive I have taken way longer as it was already part of my lifestyle. And I also substitute 1 meal a day with the organic cottage cheese and Barleans flax seed oil.

    Any suggestions on building immune system up any more than I am already?

    Gayla

    Stage III

    KEEPING THE FAITH!

    It sounds like you already are leading a healthy lifestyle. :D

    Sloan Kettering has a great web page for Integrative Medicine where you can read up on anything you’re currently taking or researching. They list any contraindications, which is crucial because you don’t want to sabotage either your efforts or your doctor’s. Here’s the web page: http://www.mskcc.org/cancer-care/integrative-medicine” class=”bbcode_url”>http://www.mskcc.org/cancer-care/integrative-medicine.

    Here’s what they have to say about Flaxseed oil: http://www.mskcc.org/cancer-care/herb/flaxseed” class=”bbcode_url”>http://www.mskcc.org/cancer-care/herb/flaxseed

    Has your primary doctor ordered any blood tests to see if you’re deficient in any vitamin or mineral? When you’re fighting a disease like cancer, the last thing you need to be is deficient in anything.

    #55951
    washoegal
    Participant

    Do go to the Sloan Kettering web site, I refer to it a lot. Especially when it comes to taking any supplements. And once you have your drains out and you are completely healed up ask your doc for 1) referral for physical therapy if you think you’ll need it or at least at home stretches. 2) RX for lymphedema message therapist and a stocking. Get the stocking right away, keep the other in you back pocket and at the first sign use it. The sooner u=you get on it, the less problem it is.

    Remember the drains must be maintained. Stripping is easy but sometimes not comfortable to do yourself. I finally did it myself when my husband had to go out of town on an emergency with his mother. I was afraid at first and found out it really was easy. I also took tape and taped down the drain bag and off I went to the store. You’ll learn to cope and it’s not forever (just will seem like it at times!). Everyone hates the dreaded drains, not because the hurt they are just so inconvenient.

    Again Good Luck,

    Mary

    #55952
    GaylaB
    Participant

    Mary,

    How long were you down and unable to do for yourself- I am making arrangements and have a 6 year old to consider.

    Did you do any other treatments such as chemo, radiation, interferon?

    I am 46 and wondering if I will work again, etc.

    The guilt you feel for not going sooner is overwhelming- I knew there was something on my leg, I just never imagined….

    Gayla

    stage III

    #55953
    jaggybug
    Participant

    I am two years out from my lymph node dissection of the left groin. I had the original tumor removed two months earlier along with the sentinel node biopsy. I had two of the three nodes test positive for melanoma. The time gap was for the healing of the lower calf. The LND of the groin was extremely hard for me. I was three days out before I was able to do therapy to be able to walk. They would not let me go home until I was able to climb stairs and I had to use a walker for the first week (they also sent me home with a commode chair). Everyone is different and time does heal all wounds. The biggest issue for me was following thru with lymph massages one year out, I had no lymph fluid buildup in the leg for the 1st year. I would highly recommend early intervention and preventive measures for long term maintenance of the leg (I also have a pump to aid in the drainage and flow of the fluid). I followed the surgery with one year of interferon treatment. I am due a PET next month and am closely monitored by a team of Doctors who are at the top of their field in melanoma treatment. You will be in my prayers as you begin this journey in the healing of your body. The most important aspect of my recovery has been the spiritual journey, not only for me but also my family and loved ones. May the giver of life wrap His loving arms around you and give you the hope and peace that surpasses all understanding!

    #55954
    msue5
    Participant

    I had CLND Jan 2011. I was non weight bearing for 10 days due to the moving of the sartorious muscle to protect the femoral artery. I think this is standard in a complete dissection and is not done in a superficial dissection. Ask for an Abdominal binder. Using this was the only way I could move without excruciating pain. The pain was from the muscle being moved so find out if they are doing that. I had no idea I was not going to be able to bear weight for 10 days. I stayed 1 night and had to prove I could get around with a walker before leaving. I live about 50 miles from where I had the surgery(Wash D.C.) but was discharged during rush hour and it took about 2 1/2 hours to get home. If I did this again I would ask to have my IV fluids stopped early in the day b/c I had to pee before we even left the city and it would have been a huge production and painful to get out of the car so I held it for 21/2 hrs. So find out about the sartorious muscle movement; get a Abd. Binder and get your IV fluids stopped early enough so your bladder isn’t full before your trip.

    #55955
    washoegal
    Participant

    Gayla,

    I’m sure you will work again, unless maybe you teach track! Like I said my operation was under the arm, I think that us easier. It’s an easier place to start stretching, to ease into weight bearing, to keep elevated if you need to, etc. But the whole trick is to attack any complication early. I think I had the whole list from nerve damage to a giant sack of lymph fluid that built up and burst after the drains were taken out, etc. My Onc is 800 miles away so at times it was either the local ER or the phone but don’t ever let any of these thing get ahead of you. address any concerns immediately. Please Note: My husband swears I am just weird no one else could possible do the things I do, he may be right ;)

    I would plan on having help around as long as you have your drains in. The doc should have given you a general idea about that. For me, I didn’t want to stop draining so they finally were pulled at 25 days, way longer than most – should be 2-3 weeks?.

    You’ll do fine, explain to you son at least the obvious part of it. He’s old enough to understand and help.

    I did not to any other therapy. I chose to wait and watch. I have been monitored very closely. Sometimes the insurance has objected but the docs have always won out.

    Mary

    #55956
    GaylaB
    Participant

    Jaggybug,

    Did one of your nodes test positive in the complete dissection? Is that why you did the Interferon?

    I was under the impression if all test negative, it is wait and watch….

    I am seeing an oncologist surgeon so our conversations are very brief and nothing is explained in DETAIL- its like this – she makes all the surgery scheduling , PET scanning etc. I am like a blind person just following orders and she does have a great assistant but she doesn’t have a lot of the answers I need so I am making a list:

    Assumimg I do see her at Pre-op the day before which is not likely but I will make an effort, this is my list so far and please advise if anything needs to be added!

    I want an abdominal binder

    RX for physical therapy closer to home ( she is 150 miles away)

    Do I need a pump to assist in drainage

    Is there a medical transport available because how in the world will I be able to sit for 150 mile drive? Especially 1 day after surgery!

    Strong pain med- what did any of you receive?

    ***after WLE and SNB, she sent me home with like 10 5mg. Vicodin and I literally thought I was dying from pain!!! When I called about it she said take 2 at a time instead of 1 so basically I had 2 days of pain meds

    Any other things I need to address- will I need a wheelchair as I did with the WLE?

    I appreciate all the info- you have been so helpful everyone! The cancer center of America just opened here in Atlanta last week and from what I have read they have the latest technology and integrate nutrition with modern medicine – however I am currently being treated at Emory, I suppose I have the right to change Dr if I desire.

    Thanks and I’m keeping the faith- Faith is not knowing what God can do , it’s knowing what he WILL do!

    Gayla

    Stage III

    #55957
    Linny
    Participant

    Hi Gayla!

    My surgery was done in a left axilla and I was given a prescription for oxycodone to help with the pain. I only used it when I slept. My arm was sore during the day but it wasn’t bad. The surgeon did cut some nerves to help with pain control. I’m still numb in some areas under the arm after 18+ months but it’s no big deal because it’s just my armpit. :D

    I’m not sure if you need a pump for to assist you in drainage from your surgical site. You should definitely get at least one drain. They will teach you how to deal with it.

    With regard to lymphedema prevention, check this site out. They have a list of therapists by state: http://www.lymphnet.org/” class=”bbcode_url”>http://www.lymphnet.org/. I learned something interesting yesterday about folks who have lymph nodes removed from the groin area. Apparently there’s a night time compression sleeve available for the leg that’s quilted and many patients are using that in lieu of a compression pump. But let’s hope you won’t be needing that.

    Sam Donaldson, the ABC news anchor, was diagnosed with Stage III melanoma in 1995. It was found in a lymph node in his groin. I remember reading that he does occasionally wear a compression sleeve on the affected leg. But what’s more important is that he’s still alive and kicking! http://www.patientresource.com/Skin_Survivor_Story1.aspx” class=”bbcode_url”>http://www.patientresource.com/Skin_Survivor_Story1.aspx

    #55958
    bubbasmomma
    Participant

    Very inspiring to read the Sam Donaldson’s story. Thank you for posting. We all need to keep positive, pay attention to the wins and not focus so much on the statistics. :)

    #55959
    GaylaB
    Participant

    Thanks for the info and yes that story was inspiring!

    I am exercising, getting top notch scape with supplements, trying to get my immune system in really good shape-

    Not long now:)

    Ready to get it done- over the nervousness, moving FORWARD now:)

    Just looking for helpful tips!

    Thanks

    Gayla

    #55960
    Catherine Poole
    Keymaster

    Yes, Sam is an inspiration. I interviewed him twice for my book on melanoma. He had a positive node that was misdiagnosed at first. He declined to do interferon and had the full node dissection. He is very knowledgable about melanoma and it is great he’s had no further problems. He also is a believer in the red wine adjuvant therapy. :)

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