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I could REALLY use some advice/encouragement

Forums General Melanoma Community I could REALLY use some advice/encouragement

  • Post
    pam from jersey
    Participant

    Hi All,

    I've just been diagnosed with Stage IIIa from Sloan Kettering in NYC – I had a mole on my upper left back that came back 1.25mm – they did a wide excision surgery and a sentinal lymph node biopsy. 

     

    Here's my path results:

     

    DIAGNOSIS:

     

    1.  Left upper back wide excision

    – cicatrix

    -no melanoma seen

     

    2.  left axillary sentinel lymph node #1:

    – metastatic melanoma in one lymph node

    Note:  No extension into extranodal soft tissue is seen

    Hi All,

    I've just been diagnosed with Stage IIIa from Sloan Kettering in NYC – I had a mole on my upper left back that came back 1.25mm – they did a wide excision surgery and a sentinal lymph node biopsy. 

     

    Here's my path results:

     

    DIAGNOSIS:

     

    1.  Left upper back wide excision

    – cicatrix

    -no melanoma seen

     

    2.  left axillary sentinel lymph node #1:

    – metastatic melanoma in one lymph node

    Note:  No extension into extranodal soft tissue is seen

     

    3.  sentinel node #2 left axilla

    one lymph node, negative for melanoma on levels and immunostains for s100p and melan – a

     

    I met with Oncologist who said he will see me on September 27th – he recommended a CT scan which I had this past Saturday and I meet with the surgeon tomorrow to go over the results and to have pre-admission testing done  – He said he will see me back on the 27th of September to discuss further options (wait and see approach, participating in some type of protocol prophylactically (sp?)

    I don't know….. everyone I talk to is wondering why am I not put on some type of chemo, or intereferon, or WHATEVER  –  Is it because the 2nd node was clean that it's not a priority???   I just don't know what to think – it's so depressing some things you read on the internet  –  

    Can I sleep good tonight before getting my CT results?   HELP!!!   

    p.s.  I'm 45 and in great health otherwise

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  • Replies
      glewis923
      Participant

      Hey pam from jersey-

       

      Also diagnosed with upper lft. back 2.2 mm with ulceration; 2 sentinal nodes (twins??) with small mel. spots.  I was a 46 yr. old healthy male.  Did complete nodal basin removal with very little "lymphoma?" problems.  Also just got thru wth. 1 yr. of I-feron.  Not fun at all…..BUT….. I personally say cut out anything possible that may have residual cancer cells and suffer the Interferon treatments.  I'm no expert, but being III-A makes your 5 yr. survival odds around 55-60%…..add to that the 10 to 20% increase in "odds" and your survival looks pretty good- around 70% or better.

       

      It's all just #'s i know, but may as well stack the deck as much as possible on your side.  I was diagnosed in 4-2009 and still here after being a stage III-B/C  (depending on who's opinion of what a "micro-met " is!!!), 6 CT scans, 1 false PET scan, and so on.   Hopefully you will fair well and will be hoping for the best for ALL of us.

       

      Luv-  Shady-Grady from Low swamps of GA.

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      Charlie S
      Participant

      Yes, get some quality sleep tonight; no dark shadowy figure with a swath in hand is going to whisk you away right now.

      Here is the good stuff:  It is good your doc did the SNB.  It is good there were no extra-nodal extensions,  It is good you are generallly in good health.

      Here is the questionable stuff:  Did the path report from surgery mention any "matting" of the node?   Did the path report mention the type of melanoma  e.g. Superficial Spreading or  Nodular?  The prophalactic(sp) approach you mention is indeed an Elective Lymph Node Dissection which is precautionary surgery, however, as with any surgery there are potential trade-offs and as always….risks. 

      One trade-off is the risk of lymphadema, where because all the chained lymph nodes are removed the lymph fluid has no place to go and one ends up swelling up like a dead hog lying in the hot sun.  This can be mitigated somewhat by leaving the post surgery JP drains in place until the flow of lymph is minimal…………………….that minimal flow means the lymph fluid will have time to find another route rather than pooling.  Another trade off in thinking is that by removing healthy parts of the immune system (lymph nodes), it diminishes the possibility of the natural defence against melanoma.  Both ways of thinking can be disputed, so the decision making process becomes one of which makes sense to you as an individual and not based upon "group thinking".

       

      SK is a leader in innovation with regards to melanoma diagnosis and treatment, but just because they are is no reason for a patient to be passive and simply say "yes, doctor", second opinions are important in the decision making process as well as your own gut feelings.

      Your remarks about others thinking you should be on some adjunct therapy are rewarding,  When I was first diagnosed, people poo-pooed me with "it's only skin cancer.  So it is good your surrounds realize that melanoma is indeed a serious disease…………….which it is.

      You will also find that historically, melanoma has been resistant to treatment and the approaches are often controversial..  That includes your ELD, Interferon, Chemo, Bio-chemo, GMCSF, diet, clinical trials and scan protocols that involve CT(with and without contrast dye, the millimeter slices of the scanners, PET Scans, MRI usage as a baseline and followup and even simple things like the LDH levels derived from blood tests.

      For what it worth to you, I was diagnosed Stage III in 1987 and have been Stage IV since 1996 and have been a personal witness of the evolution of melanoma, not only in detection, but treatment and one thing I have learned that this disease is fundamentally confounding, lacks specific and sucessful treatment guidelines and has a sketchy and unpredictable outcome across the patient population treatment wise but can be a matter of disease management sans a cure.

      I wish you well and do hope this helps.

      Charlie S

      Serial Cancer Patient

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        pam from jersey
        Participant

        Wow, Charlie thank you for your insight – EXTREMELY helpful  –  I am most appreciative…..

         

        You asked about the path report – it says:

         

        Melanom left upper back 1.25 mm clark level

         

        1. Non-uclerated with a tumor mitotic

        2.  Rate of <1 MIT.MM2

        Mid back – compound melanocytic nevus

         

        I have no idea what that means, it just sounds UGLY

         

        I'm glad you took the time to share your thoughts and experience – thank you so much again!!

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      glewis923
      Participant

      P. S.   FYI:  I went to Mayo Clinic in JAX, FL. for surgeries, scans, and "master" oncologist.  Got CT scan results the SAME day which saved me a lot of insomnia.  I am also a chronic worrier/cynic/doubter/skeptic                  ;   I DO HOPE and PRAY for the best but always face the reality of what could be the worst.  DON'T be afraid to push for more immediate "attention" and get your local Dr. or Sloan-Kett. Dr. to give you Avitan or something like that to help you chill at nite.  If they can't grant you that little bit of compassion, then I would personally "fire" them.

      Shady-Grady.

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        pam from jersey
        Participant

        Shady Grady – Thank you for your comments – I think I found the right "place" to be FINALLY……  I think you're right – I will be taking a more aggressive approach with these doctors.  Wish I could have gotten my CT results right away as well – since I went on Saturday I haven't slept very well  – the surgeon prescribed Lorazepam which doesn't do much for me – is that the same as Avitan?  

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      Fen
      Participant

       

      Pam – I'm sorry you had to join us but this is a great place for information and support.  

       When you meet with your oncologist he/she will offer you some options of which immunotherapy (typically interferon) might be one.  Melanoma doesn't respond well to chemotherapy so many therapies work by revving up the immune system.  If you chose to do interferon you will have a month of daily infusions for a month followed by 11 months of self-injections 3 x week.  Some oncologists stick with just the monthly regime.  You might also be offered the "watch and wait" treatment or maybe  a clinical trial.

      In any case you are in one of the toughest times after diagnosis – you're still taking it in and you don't know what you're going to be doing for it.  Is there any way you can get into an oncologist sooner?  A month is a long time to wait for information….and sleep.

      Good luck, Pam, keep us posted

      Fen

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        pam from jersey
        Participant

        Hi Fen –

         

        You're right – I am "still taking it in and figuring out what the heck to do" –  I forgot to mention that I had a chest xray last month and a sonogram of my liver, kidneys, pancreas – and all were normal   So I should probably chill out with regards to getting my CT scan results tomorrow – but I CANT HELP WORRYING!  I'm sorry, but this SUCKS!

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        EmilyandMike
        Participant

        Hi Pam – worrying is normal and some just do it more than others (like me).  My husband is one of those people that doesnt worry that much – he is also your melanoma twin – 1.25 mm, low mitotic rate, lesion on the back, Stage 3a.  He turns 43 next week and was diagnosed one year ago.  Scan time is horrendous, but there is no way around it.  You will be doing scans for quite a while with a melanoma diagnosis (hey its one benefit of being stage 3, a silver lining). Perhaps something natural would be best for your stress?  Meditation? Hypnotherapy? Although Ativan/Lorezapam is what I take!  Mike refused interferon.  Chosing interferon or not is a personal choice and it requires you to be very informed.  If you want to chat, please let me know! 

        Emily

        wife of Mike, stage 3a

        http://www.emandmichael.com

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        EmilyandMike
        Participant

        Pam – forgot to mention – not sure if you had a complete lymph node dissection or not.  If you do, you would be eligible for the ipilimumab trial as adjuvant therapy after surgery.  But you need to sign up within 8-12 weeks after surgery.  Mike would have done this trial but he didnt qualify due to the amount of cells in his sentinel node (too little),   BUT the trial is blind so you will not know for sure if you get the drug unless you get the side effects.  Ipi side effects seem to be way less than Interferon.

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      washoegal
      Participant

      I guess you are going to hear both side of the stories here.  I too am 3a, I chose the watch and wait approach.  I had a 3MM tumor on my waist, 2 microscopic amounts in 2 sentinel lymph nodes, I had all the other nodes removed under my arm – all clear.  I was offered interferon or watch and wait.  I was told I did not have enough cancer to qualify for any trials. 

      My reasoning is as follows:  According to my Onc. Interferon would only increase my survival rate 5-10% and by the way those that did benefit from interferon did not live any longer than those that received no benefit.  (I did find the study that showed this on the net).  It's a year long protocol, with some nasty side effects, so I chose to live my life for that year.

      Sorry I can't tell you if this was a good decision or not, my first set of scans post-surgery are in September.  Do what's right for you, just stay on top on you scans and be aware of changes in your body.  That, I think, is the best advice.

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      triciad
      Participant

      Hi Pam,

      I, too, am from NJ.  Last summer, I was diagnosed stage 3B at age 44.  I chose to do the Interferon because I felt someone has to be in the 10% it works for…why not me?

      I saw Dr. Wolchok at Sloan Kettering.  He was wonderful, but he wanted me to do a trial with Ipi.  Half of the people get the drug and the other half get the placebo.  I wasn't comfortable with a 50% chance of not getting the drug, and therefore, doing nothing.  Sloan doesn't even offer Interferon because of its low stats.  If you decide to go with Interferon, you will have to find another place to get it.  I'm at Hackensack.

      Bottom line, I've been on Interferon since October 2009.  I am looking forward to finishing my self inections in October of this year.  I'm tired but not dead.  I worked throughout the treatments.  Everyone responds differently.  Some people can't get off the couch; others can.   That's the most frustrating part of all of this…the uncertainty and vastly different opinions/reactions.  In the end, you have to go with what you feel is the right decision for YOU…and never look back because you made the right decision.  Most importantly, stay positive; attitude is everything!!!!

      Please feel free to email me if you have any other questions or need help.

      Good luck with everything!

      Tricia

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      ed_CT
      Participant

      Pam,

      I was Stage III when first diagnosed in 2004.  I went to Sloan to look into clinical trials since I didn't get any good information about the benefits of interferon.   I ended up in a vaccine trial at U of Penn and then went to Stage IV.  There I went on to a trial of Nexavar/Temodar and am now NED 5 years later.   My advice is to look for a clinical trial.  It can not hurt and at least keeps you involved with the latest in treatment options.   Look at Sloan, U Penn and other institutions that are on the cutting edge of Mel research.

      Best wishes

      Ed

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      mommyb4anything
      Participant

      I am 32 and also recently diagnosed.  Our situations are very similar.  I am also diagnosed as stage 3.  My tumor was on my right upper thigh.  I had 2 surgeries removing the tumor and removing all lymph nodes in my groin area.  My oncologist also didn't recommend interferon.  I may still choose to do it anyway.  I have a 2 1/2 year old son.  I have to know that I am doing something to fight this.  My doc did recommend a clinical trial.  You should know the trial is drug vs. placebo.  I'm not sure how you feel about that, but the drug is ipilimumab.  Good luck on your journey. 

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      mommyb4anything
      Participant

      I am 32 and also recently diagnosed.  Our situations are very similar.  I am also diagnosed as stage 3.  My tumor was on my right upper thigh.  I had 2 surgeries removing the tumor and removing all lymph nodes in my groin area.  My oncologist also didn't recommend interferon.  I may still choose to do it anyway.  I have a 2 1/2 year old son.  I have to know that I am doing something to fight this.  My doc did recommend a clinical trial.  You should know the trial is drug vs. placebo.  I'm not sure how you feel about that, but the drug is ipilimumab.  Good luck on your journey. 

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