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Newbie – Stage III-C after Surgery – Looking for your thoughts

Forums General Melanoma Community Newbie – Stage III-C after Surgery – Looking for your thoughts

  • Post
    JohnHen
    Participant

     

    I am a new member of this exclusive club and I am searching for some thoughts on a few questions. On Tuesday, November 16, I had a sentinel lymph node mapping and a wide excision on my back left shoulder for an ulcerated tumor that was first noticed mid August as a tiny bump,and initially removed about 4 weeks ago. The pathology after surgery came back as: 

    Breslow thickness: 7 mm; Clark level: 5; mitoses: 15/mm2; ulserated

    13 lymph nodes were removed with two positive for macroscopic cell growth both inside and outside of the two nodes

     

    I am a new member of this exclusive club and I am searching for some thoughts on a few questions. On Tuesday, November 16, I had a sentinel lymph node mapping and a wide excision on my back left shoulder for an ulcerated tumor that was first noticed mid August as a tiny bump,and initially removed about 4 weeks ago. The pathology after surgery came back as: 

    Breslow thickness: 7 mm; Clark level: 5; mitoses: 15/mm2; ulserated

    13 lymph nodes were removed with two positive for macroscopic cell growth both inside and outside of the two nodes

    Clear margins were achieved except for the bottom where only 1mm clear tissue could be achieved before hitting muscle

    Presently, I have no symptoms or indications of any other tumors.

    I have been doing a lot of reading so I have a pretty good idea of where I stand statistically. My questions today are:

    1. How long should I wait after surgery for the PET scan in order to avoid false positives?

    2. Living in Southern California, what would be the best center(s) for melanoma treatment? As of Jan 1, I will have a PPO that includes City of Hope, Ronald Reagan UCLA Medical Center, UCSF Medical Center, and I believe Univ. of Stanford Medical Center. Possible others but I have seen these rated high as overall cancer centers. My current HMO will allow a second opinion after my PET scan so I should be able to at least pick the center to get started.

    3. Depending on which stage i am at after PET scan, can you suggest the most beneficial treatment to pursue. I am open to clinical studies.

    Heck of a way to begin our retirement as of July 1, but we will do all that we can do and hope that I can survive until a true cure becomes available. I appreciate your thoughts in advance.

    John, 58, healthy and hopeful!

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  • Replies
      Julie in SoCal
      Participant

      Hi John,

      Sorry to have welcome you to this group, but glad you've found it.  It's a wonderful group for support and informattion.

      I can't answer your first and last question about treatments, but I can help with the second.  I am also in So Cal (Huntington Beach).  I go to the Angeles Clinic in Santa Monica.  It's  abit of a hike for me, but it's been well worth the drive.   Dr. O'Day is my dr. and and his staff are wonderful.  I also hear that St. John's Hospital and the John Wayne Cancer center has a good mel program. 

      Here's the info for the Angeles Clinic (http://www.theangelesclinic.org/Home/SpecialtyCenters/MelanomaSkinCancer/tabid/19288/Default.aspx)

      Blessings,

      Julie

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      Julie in SoCal
      Participant

      Hi John,

      Sorry to have welcome you to this group, but glad you've found it.  It's a wonderful group for support and informattion.

      I can't answer your first and last question about treatments, but I can help with the second.  I am also in So Cal (Huntington Beach).  I go to the Angeles Clinic in Santa Monica.  It's  abit of a hike for me, but it's been well worth the drive.   Dr. O'Day is my dr. and and his staff are wonderful.  I also hear that St. John's Hospital and the John Wayne Cancer center has a good mel program. 

      Here's the info for the Angeles Clinic (http://www.theangelesclinic.org/Home/SpecialtyCenters/MelanomaSkinCancer/tabid/19288/Default.aspx)

      Blessings,

      Julie

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        JohnHen
        Participant

        Thank you for the information Julie. I will add Angeles Clinic to my list of possibles. It looks like Dr. O'Day has presented at some significant events concerning the Ipi trials. That is what seems to be one of the most promising treatments.

        Thanks again,

        John

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        JohnHen
        Participant

        Thank you for the information Julie. I will add Angeles Clinic to my list of possibles. It looks like Dr. O'Day has presented at some significant events concerning the Ipi trials. That is what seems to be one of the most promising treatments.

        Thanks again,

        John

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      Jenjen
      Participant

      Hi John,

       

      Sorry to hear about your diagnosis. I am stage 3a and am in San Diego. I go to local doctors for check ups and pet/ct scans but my main doctors are at UCSF . They are amazing ..Dr. Daud is great and up until a couple months ago Dr. Bastian Balch (a well know researcher) was working there too. I have complete faith in them and they have helped me get through my diagnosis. Stage 3a (originally diagnosed at 26. I am now 27 ..almost 28.

      I just finished a year long treatment of interferon and have my next PET/CT in January. I know interferon is a personal choice but it was right for me. Have you looked into getting your genetic testing done? To see if you are braf positive or have ckit? etc? Keep us posted!

       

      Jenjen 3a

      NED 15 months and praying it holds

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      Jenjen
      Participant

      Hi John,

       

      Sorry to hear about your diagnosis. I am stage 3a and am in San Diego. I go to local doctors for check ups and pet/ct scans but my main doctors are at UCSF . They are amazing ..Dr. Daud is great and up until a couple months ago Dr. Bastian Balch (a well know researcher) was working there too. I have complete faith in them and they have helped me get through my diagnosis. Stage 3a (originally diagnosed at 26. I am now 27 ..almost 28.

      I just finished a year long treatment of interferon and have my next PET/CT in January. I know interferon is a personal choice but it was right for me. Have you looked into getting your genetic testing done? To see if you are braf positive or have ckit? etc? Keep us posted!

       

      Jenjen 3a

      NED 15 months and praying it holds

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        JohnHen
        Participant

        Thanks for the feedback. I am very new at this so right now I am just focusing on getting connected with the right facility and doctors. I have been reading a lot about the newest breakthroughs and hope to get into an Ipi trial. At this time, I don't know if I have any active tumor in remote sites and it looks like you need an active tumor for the Braf trials.

        UCSF is definitely on my list of possible programs so I will keep Dr. Daud's name in mind.

        Thanks

        John

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        JohnHen
        Participant

        Thanks for the feedback. I am very new at this so right now I am just focusing on getting connected with the right facility and doctors. I have been reading a lot about the newest breakthroughs and hope to get into an Ipi trial. At this time, I don't know if I have any active tumor in remote sites and it looks like you need an active tumor for the Braf trials.

        UCSF is definitely on my list of possible programs so I will keep Dr. Daud's name in mind.

        Thanks

        John

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      Fen
      Participant

       

      John- my surgeon waited a month post surgery before the pet scan.  The logic was that the uptake would be focused on the incision and it would be difficult to tell what was really going on.

      I did 6 months of interferon, but that was 5 years ago and there are better options out there now.

      Best of luck to you and please keep us posted.

      Fen

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      Fen
      Participant

       

      John- my surgeon waited a month post surgery before the pet scan.  The logic was that the uptake would be focused on the incision and it would be difficult to tell what was really going on.

      I did 6 months of interferon, but that was 5 years ago and there are better options out there now.

      Best of luck to you and please keep us posted.

      Fen

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        JohnHen
        Participant

        Thanks Fen,

        The month waiting period sounds reasonable. I am considering the Interferon unless I am eligible to enter a trial of Ipi or other more promising drugs. Until I do my PET scan, I really don't know exactly where I stand concerning distant tumors. I am hoping of a clear scan but I will work with what I get.

        John

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        JohnHen
        Participant

        Thanks Fen,

        The month waiting period sounds reasonable. I am considering the Interferon unless I am eligible to enter a trial of Ipi or other more promising drugs. Until I do my PET scan, I really don't know exactly where I stand concerning distant tumors. I am hoping of a clear scan but I will work with what I get.

        John

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        melanomafighter
        Participant

        hi John and welcome, I am still fairly new, you can look at my profile for the details but I have been on here since April of this year.  May I had 28 nodes removed and did the interferron for about 6 weeks and went back to work. I am going for my first pet scan for follow up since my original one in April.  That one was negative but its standard to take nodes out anyway and all were negative so I am hoping for the same on this scan, won't know til Friday.  To answer how long to wait, my last surgery was in May, so my dr says once a year every year and a brain scan to go with it.  Its bee 8 months since I first found out but he decided against the brain scan for this first time as I had one in May before my surgery?  I have heard of false negatives but not sure what its caused from and I hope I dont have any of those either.  Good luck to you and keep in touch….Teresa in Indiana

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        melanomafighter
        Participant

        hi John and welcome, I am still fairly new, you can look at my profile for the details but I have been on here since April of this year.  May I had 28 nodes removed and did the interferron for about 6 weeks and went back to work. I am going for my first pet scan for follow up since my original one in April.  That one was negative but its standard to take nodes out anyway and all were negative so I am hoping for the same on this scan, won't know til Friday.  To answer how long to wait, my last surgery was in May, so my dr says once a year every year and a brain scan to go with it.  Its bee 8 months since I first found out but he decided against the brain scan for this first time as I had one in May before my surgery?  I have heard of false negatives but not sure what its caused from and I hope I dont have any of those either.  Good luck to you and keep in touch….Teresa in Indiana

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        JohnHen
        Participant

        Hi Teresa,

        Thanks for sharing your experience with me. The more I hear, the better. I am hoping to schedule my PET/CT for next week so I should know where I stand soon and then be able to plan a treatment strategy. I am hoping to get into one of the current studies that is using IPI. That seems to be the most promising. If I have remote tumors, then I will possible be a candidate for a BRAF trial. If I can get into either of these trials, I will probably forgo the Interferon. At least there are some promising new approaches to treating melanoma that we will have access to. Hopefully, the momentum will continue to build and a cure will be discovered in our lifetimes.

        John

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        JohnHen
        Participant

        Hi Teresa,

        Thanks for sharing your experience with me. The more I hear, the better. I am hoping to schedule my PET/CT for next week so I should know where I stand soon and then be able to plan a treatment strategy. I am hoping to get into one of the current studies that is using IPI. That seems to be the most promising. If I have remote tumors, then I will possible be a candidate for a BRAF trial. If I can get into either of these trials, I will probably forgo the Interferon. At least there are some promising new approaches to treating melanoma that we will have access to. Hopefully, the momentum will continue to build and a cure will be discovered in our lifetimes.

        John

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        melanomafighter
        Participant

        hi John and welcome, I am still fairly new, you can look at my profile for the details but I have been on here since April of this year.  May I had 28 nodes removed and did the interferron for about 6 weeks and went back to work. I am going for my first pet scan for follow up since my original one in April.  That one was negative but its standard to take nodes out anyway and all were negative so I am hoping for the same on this scan, won't know til Friday.  To answer how long to wait, my last surgery was in May, so my dr says once a year every year and a brain scan to go with it.  Its bee 8 months since I first found out but he decided against the brain scan for this first time as I had one in May before my surgery?  I have heard of false negatives but not sure what its caused from and I hope I dont have any of those either.  Good luck to you and keep in touch….Teresa in Indiana

        Loading spinner
        melanomafighter
        Participant

        hi John and welcome, I am still fairly new, you can look at my profile for the details but I have been on here since April of this year.  May I had 28 nodes removed and did the interferron for about 6 weeks and went back to work. I am going for my first pet scan for follow up since my original one in April.  That one was negative but its standard to take nodes out anyway and all were negative so I am hoping for the same on this scan, won't know til Friday.  To answer how long to wait, my last surgery was in May, so my dr says once a year every year and a brain scan to go with it.  Its bee 8 months since I first found out but he decided against the brain scan for this first time as I had one in May before my surgery?  I have heard of false negatives but not sure what its caused from and I hope I dont have any of those either.  Good luck to you and keep in touch….Teresa in Indiana

        Loading spinner
        melanomafighter
        Participant

        hi John and welcome, I am still fairly new, you can look at my profile for the details but I have been on here since April of this year.  May I had 28 nodes removed and did the interferron for about 6 weeks and went back to work. I am going for my first pet scan for follow up since my original one in April.  That one was negative but its standard to take nodes out anyway and all were negative so I am hoping for the same on this scan, won't know til Friday.  To answer how long to wait, my last surgery was in May, so my dr says once a year every year and a brain scan to go with it.  Its bee 8 months since I first found out but he decided against the brain scan for this first time as I had one in May before my surgery?  I have heard of false negatives but not sure what its caused from and I hope I dont have any of those either.  Good luck to you and keep in touch….Teresa in Indiana

        Loading spinner
        melanomafighter
        Participant

        hi John and welcome, I am still fairly new, you can look at my profile for the details but I have been on here since April of this year.  May I had 28 nodes removed and did the interferron for about 6 weeks and went back to work. I am going for my first pet scan for follow up since my original one in April.  That one was negative but its standard to take nodes out anyway and all were negative so I am hoping for the same on this scan, won't know til Friday.  To answer how long to wait, my last surgery was in May, so my dr says once a year every year and a brain scan to go with it.  Its bee 8 months since I first found out but he decided against the brain scan for this first time as I had one in May before my surgery?  I have heard of false negatives but not sure what its caused from and I hope I dont have any of those either.  Good luck to you and keep in touch….Teresa in Indiana

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        melanomafighter
        Participant

        wow sorry mine posted three times, computer was slow and didn't let me know it was sent…lol I just keep clicking on it

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        melanomafighter
        Participant

        wow sorry mine posted three times, computer was slow and didn't let me know it was sent…lol I just keep clicking on it

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      dian in spokane
      Participant

      Hello John,

      Sorry you have to join us. I would think that you would have a PET or maybe a PET/CT relatively soon to check for organ spread and to finalize your staging.

      Assuming that there is no further spread, you are most likely looking at surgical removal of the rest of the nodes in the lymph node basin where your sentinal node biopsy was done (your armpit I assume) And almost always, this is followed by a recommendation of high dose interferon administered by intraveneous infusion for the five days a week for 5 weeks, followed by lower dose self injections 3 times a week for 11 months. Interferon is generally started within 58 days of the LND (Lymph Node Dissection)

      As you have mentioned, clinical trials are also an option, and you should be looking into them. (go to clinicaltrials.gov) But realistically, knowing your stage is essential before considering treatment or trials. If things stand as they are, you are stage 3C, and you can look at trials for which you would be eligible, but if you have metastes in any organs, that would change everything.

      You are, arguably, at the most stressful part of your diagnosis, having to wait to find out your real stage. All you can do right now is research and wait, and it can drive you nuts. Researching without having all your details can just raise your stress level to the max.

      If you are stage IV, then IPI might be the best bet at this point..unless it's something that could be surgically resected. Surgery is the best friend of melanoma patients in my opinion. But it's not always an option.

      I could be wrong, but I think that the only Ipi trials open to stage 3 patients have a placebo arm, and if I were in your position I would not want to go with ANY trial that has a placebo arm.

      Does anyone know if there's an Ipi trial out there that compares Ipi and interferon?? I haven't heard of it if it's there. Because mainly interferon is for stage 3 and Ipi has been mostly limited to stage 4.

      I saw that a previous poster mentioned a month as a time frame, but I think that when I advanced to stage 3B, my PET scan was done right around the same time as my Wide Excision. I was fortunate enough not to have to have a LND. But I don't think they waited a month to do my PET. They weren't worried about the surgical site being reactive. They were looking for tumors in my lungs and liver.

      Finally, I'd like to say that there are many people here at both stage 3 and 4 who are thriving, some without signs of disease (we call that NED..no evidence of disease, and others who are actively fighting disease, either stable or in treatment. This is a good place you've found, with people who will understand every step you have to take.

      Good luck,

      dian

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      dian in spokane
      Participant

      Hello John,

      Sorry you have to join us. I would think that you would have a PET or maybe a PET/CT relatively soon to check for organ spread and to finalize your staging.

      Assuming that there is no further spread, you are most likely looking at surgical removal of the rest of the nodes in the lymph node basin where your sentinal node biopsy was done (your armpit I assume) And almost always, this is followed by a recommendation of high dose interferon administered by intraveneous infusion for the five days a week for 5 weeks, followed by lower dose self injections 3 times a week for 11 months. Interferon is generally started within 58 days of the LND (Lymph Node Dissection)

      As you have mentioned, clinical trials are also an option, and you should be looking into them. (go to clinicaltrials.gov) But realistically, knowing your stage is essential before considering treatment or trials. If things stand as they are, you are stage 3C, and you can look at trials for which you would be eligible, but if you have metastes in any organs, that would change everything.

      You are, arguably, at the most stressful part of your diagnosis, having to wait to find out your real stage. All you can do right now is research and wait, and it can drive you nuts. Researching without having all your details can just raise your stress level to the max.

      If you are stage IV, then IPI might be the best bet at this point..unless it's something that could be surgically resected. Surgery is the best friend of melanoma patients in my opinion. But it's not always an option.

      I could be wrong, but I think that the only Ipi trials open to stage 3 patients have a placebo arm, and if I were in your position I would not want to go with ANY trial that has a placebo arm.

      Does anyone know if there's an Ipi trial out there that compares Ipi and interferon?? I haven't heard of it if it's there. Because mainly interferon is for stage 3 and Ipi has been mostly limited to stage 4.

      I saw that a previous poster mentioned a month as a time frame, but I think that when I advanced to stage 3B, my PET scan was done right around the same time as my Wide Excision. I was fortunate enough not to have to have a LND. But I don't think they waited a month to do my PET. They weren't worried about the surgical site being reactive. They were looking for tumors in my lungs and liver.

      Finally, I'd like to say that there are many people here at both stage 3 and 4 who are thriving, some without signs of disease (we call that NED..no evidence of disease, and others who are actively fighting disease, either stable or in treatment. This is a good place you've found, with people who will understand every step you have to take.

      Good luck,

      dian

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        JohnHen
        Participant

        Hi Dian,

        I hope to get my PET/CT next week. I still have a drain tube from surgery and my surgery was only a couple of weeks ago. Depending on the outcome of the scans, that will put me in either stage III-C or stage IV. I prefer smaller numbers! Based on this determination, I will learn what options are open for treatment. I am leaning toward IPI or BRAF studies as they seem to have the most promising outcomes to date but I well wait to see what the doctors recommend. Thanks for sharing your thoughts and yes, surgery will also become my friend over time.

        John

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        JohnHen
        Participant

        Hi Dian,

        I hope to get my PET/CT next week. I still have a drain tube from surgery and my surgery was only a couple of weeks ago. Depending on the outcome of the scans, that will put me in either stage III-C or stage IV. I prefer smaller numbers! Based on this determination, I will learn what options are open for treatment. I am leaning toward IPI or BRAF studies as they seem to have the most promising outcomes to date but I well wait to see what the doctors recommend. Thanks for sharing your thoughts and yes, surgery will also become my friend over time.

        John

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      vivian
      Participant

      Hello John,

      This is very strange, but you and I had our surgery on the same day, November 16, following much the same diagnosis.  I had nodular melanoma, left back, Breslow 4.35, mitotic rate 9, Clark level V.  The wide excision results were clear, but the SNB came back one of two nodes positive.  I will have the lymph node dissection on December 17.  I did have a PET/CT scan on November 22, less than two weeks after the excision.  I was concerned as well about whether the recent surgery would taint the scans, but they assured me they could tell the difference.  My scans were clear, so that is good, but of course, they cannot detect microscopic spread.  This is my second fight with a crummy and hard to treat cancer, as I am 8 years post (very successful) stem cell transplant for  bone marrow failure.  I am currently staged IIIa with this melanoma.  I know I will not do interferon and don't know what my past history does to my chances for the other options out there.  Right now I choose watch and wait, I think.  By the way, I love your signature!  I will be 60 next week, and I am "healthy and hopeful" too.

      Vivian in Delaware

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      vivian
      Participant

      Hello John,

      This is very strange, but you and I had our surgery on the same day, November 16, following much the same diagnosis.  I had nodular melanoma, left back, Breslow 4.35, mitotic rate 9, Clark level V.  The wide excision results were clear, but the SNB came back one of two nodes positive.  I will have the lymph node dissection on December 17.  I did have a PET/CT scan on November 22, less than two weeks after the excision.  I was concerned as well about whether the recent surgery would taint the scans, but they assured me they could tell the difference.  My scans were clear, so that is good, but of course, they cannot detect microscopic spread.  This is my second fight with a crummy and hard to treat cancer, as I am 8 years post (very successful) stem cell transplant for  bone marrow failure.  I am currently staged IIIa with this melanoma.  I know I will not do interferon and don't know what my past history does to my chances for the other options out there.  Right now I choose watch and wait, I think.  By the way, I love your signature!  I will be 60 next week, and I am "healthy and hopeful" too.

      Vivian in Delaware

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        JohnHen
        Participant

        Hi Vivian,

        Sorry to hear that you have joined the party! For a second time! Thanks for sharing your story. Today I made my PET/CT scan appointment for next Friday, Dec. 10. I have a sense of peace about all of this, of course, I haven't had any real symptoms to deal with. I do, however, have confidence in my destiny so that helps tremendously. I hope all works out well for you.

        John

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        JohnHen
        Participant

        Hi Vivian,

        Sorry to hear that you have joined the party! For a second time! Thanks for sharing your story. Today I made my PET/CT scan appointment for next Friday, Dec. 10. I have a sense of peace about all of this, of course, I haven't had any real symptoms to deal with. I do, however, have confidence in my destiny so that helps tremendously. I hope all works out well for you.

        John

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      2atlascedars
      Participant
      Hi John,

      Sorry to hear of your dilemma. I didn’t see any mention of insurance in your posting. I just thought I would mention that if you are being treated under an insurance plan to make sure the hospital you are seen by is “in network” or equivalent.

      After my diagnosis, my dermatologist offered to refer me to either UCSF or Stanford, and I picked Stanford because it was closer to me. I was so freaked-out and solely concerned about my health, that I wasn’t even thinking about the financial implications of my decision at that moment. Fortunately, Stanford was in my plan’s network.

      I have nothing to compare them to, as this was my first visit to the cancer carnival, but I have been happy with Stanford up to this point. Feel free to email me if you want more details or a contact at Stanford.

      Best regards,
      Mark (Stage 2A) from (Northern) California

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      2atlascedars
      Participant
      Hi John,

      Sorry to hear of your dilemma. I didn’t see any mention of insurance in your posting. I just thought I would mention that if you are being treated under an insurance plan to make sure the hospital you are seen by is “in network” or equivalent.

      After my diagnosis, my dermatologist offered to refer me to either UCSF or Stanford, and I picked Stanford because it was closer to me. I was so freaked-out and solely concerned about my health, that I wasn’t even thinking about the financial implications of my decision at that moment. Fortunately, Stanford was in my plan’s network.

      I have nothing to compare them to, as this was my first visit to the cancer carnival, but I have been happy with Stanford up to this point. Feel free to email me if you want more details or a contact at Stanford.

      Best regards,
      Mark (Stage 2A) from (Northern) California

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        JohnHen
        Participant

        Hi Mark, may fellow Californian.

        Thanks for bringing up the insurance question. Fortunately, I have a good insurance plan that is switching to a PPO this January. Once I retired from the college that employed me, I selected the best plan available during open enrollment. I have been blessed with an employer who over the years created a self-funded medical fund that provides life-time fully paid health insurance for it's retires. That is rare these days so I am truly blessed. I will make sure that where ever I go for treatment that it is within the network. I can go outside of the network but I would have to pick up a substantial portion of the cost and there is no annual cap as is true in the network. Fortunately, most of he cancer centers in California are included in the network including Stanford but being in Southern California doesn't make that a practical choice except for possibly access to a unique trial. 

        Thanks for the input.

        John

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        JohnHen
        Participant

        Hi Mark, may fellow Californian.

        Thanks for bringing up the insurance question. Fortunately, I have a good insurance plan that is switching to a PPO this January. Once I retired from the college that employed me, I selected the best plan available during open enrollment. I have been blessed with an employer who over the years created a self-funded medical fund that provides life-time fully paid health insurance for it's retires. That is rare these days so I am truly blessed. I will make sure that where ever I go for treatment that it is within the network. I can go outside of the network but I would have to pick up a substantial portion of the cost and there is no annual cap as is true in the network. Fortunately, most of he cancer centers in California are included in the network including Stanford but being in Southern California doesn't make that a practical choice except for possibly access to a unique trial. 

        Thanks for the input.

        John

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