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New Diagnosis in Canada

Forums General Melanoma Community New Diagnosis in Canada

  • Post
    jimjoeb
    Participant

    On Friday I joined your ranks. Last summer, I noticed a mole that had grown up, like a skin tag. I didn't like it but waited until my annual physical to ask my family doctor who thought it was nothing. I was seeing a dermatologist for other skin issues so I asked my dermatologist. She didn't think it was anything. When I was back for another treatment of the other skin issue I asked to have it removed for cosmetic reasons which happened on March 25th. Mar 31 I get called backed. The pathologist grapped my dermatologist in the hall to say that the benign lesion was melanoma.

    On Friday I joined your ranks. Last summer, I noticed a mole that had grown up, like a skin tag. I didn't like it but waited until my annual physical to ask my family doctor who thought it was nothing. I was seeing a dermatologist for other skin issues so I asked my dermatologist. She didn't think it was anything. When I was back for another treatment of the other skin issue I asked to have it removed for cosmetic reasons which happened on March 25th. Mar 31 I get called backed. The pathologist grapped my dermatologist in the hall to say that the benign lesion was melanoma. I met with my dermatologist on Apr 1. She didn't have the pathology report yet but told me that it was 1.45 mm and level iv. She had already requested blood work (for LDH), CT-scan and SNIB. Meeting with surgeon is tomorrow and CT is Thursday evening.

    Like many who are newly diagnosed, I'm scared but I'm trying to manage my emotions until the facts are in. Anyone in Ottawa with melanoma treatment experience?

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  • Replies
      Carol Taylor
      Participant

      I'm sorry to learn of your diagnosis.  Is your surgeon a melanoma specialist? It will be to your advantage to be dealing with a specialist…and a dermatologist who specializes in melanoma.  I'm not from Canada, know nothing about your system, but I can offer that much advice.

      Hang in there, please don't make any huge decisions until you meet with a melanoma specialist/surgeon.  But see how fast that can be arranged.

      It's a scary time and right now there's a lot you don't know and that can compound fears; have a good cry if need be and clear that out, but do continue to keep those fears from running wild.  You need to maintain a clear head.

      Take someone close to you with you on these appointments and make sure they go with you everywhere you go.  When you're with a doctor, they're with you. Two sets of ears and support.

      http://www.facebook.com/pages/Melanoma-Prayer-Center/136617429740982

      Go there if you want, you don't have to belong to facebook to read what's there.

      Grace and peace,

      Carol

      stage 3b

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      Carol Taylor
      Participant

      I'm sorry to learn of your diagnosis.  Is your surgeon a melanoma specialist? It will be to your advantage to be dealing with a specialist…and a dermatologist who specializes in melanoma.  I'm not from Canada, know nothing about your system, but I can offer that much advice.

      Hang in there, please don't make any huge decisions until you meet with a melanoma specialist/surgeon.  But see how fast that can be arranged.

      It's a scary time and right now there's a lot you don't know and that can compound fears; have a good cry if need be and clear that out, but do continue to keep those fears from running wild.  You need to maintain a clear head.

      Take someone close to you with you on these appointments and make sure they go with you everywhere you go.  When you're with a doctor, they're with you. Two sets of ears and support.

      http://www.facebook.com/pages/Melanoma-Prayer-Center/136617429740982

      Go there if you want, you don't have to belong to facebook to read what's there.

      Grace and peace,

      Carol

      stage 3b

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      jimjoeb
      Participant

      Thanks so much for the fast reply. I think that my surgeon for the SNB is a general surgeon but I'm not sure. I'll know more tomorrow.

      At this point, I'm feeling supported. My dermatologist used her personal influence to accelerate the appointment with the surgeon and I just got a call from my family doctor to check in. She hasn't seen any of the facts yet but promised to let me know each time she received something new.

       

      My anxieties are from two directions. One, the length of time since I first noticed it to when it was removed (at least 7 months). Also, I am closely monitored for abnormalities in both breasts. No cancer yet. I read one internet article that said that there might be a connection.

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        Carol Taylor
        Participant

        OK, a few things here. Yes, you need support and I don't want to knock your derm and general surgeon, but they will not have the expertise a melanoma specialist will. I can't stress enough the importance of having someone who is up on this beast.

        Also, since I don't know what you read on the Internet, remember to take what you read with a grain of salt, it may or may not be accurate.  Remember that we are all different even if you did read an accurate article.  Remember "might" is not "is." Don't go down that road and attach "definite" to every "maybe" out there…another reason you need a melanoma specialist!  Notice I'm really serious about this.

        My mole started changing March 2008, was removed at an urgent care in July 2008…4 months…at the time it was removed I actually had a September 2008 appt to have a derm remove it (story in a link in the blog link in my signature), which would have been 6 months had I gone.  My melanoma spec. surgeon told me that wouldn't have made a difference, the cancer still would have been only in the first sentinel…it may have been bigger, but it wouldn't have spread to a second node in that time frame.  Because we're all different, I can't tell you that would apply to you, but I can tell you that you can't go back and redo this time of your life.  You've got to move forward from where you are right now and you should move forward with a melanoma specialist by your side.

        You've learned, like the rest of us, the importance of keeping a vigilant check and having suspicious things removed, even insisting on it when your derm doesn't see the necessity…that insistance on your part will save your life.  Get a specialist!  And a dermatologist that specializes in melanoma.  They exist!

        Place your anxieties where it will do some good, and that's in gathering facts and making wise decisions.  You've got tests coming up where you'll need to keep your wits.  Focus your fears in a positive direction.  And, in case I forgot to mention: get a melanoma specialist for your surgeon and one for your dermatologist.  Your regular will understand and if he or she doesnt' insist on it then you know you really need a specialist!

        All the best.

        Carol

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        Carol Taylor
        Participant

        OK, a few things here. Yes, you need support and I don't want to knock your derm and general surgeon, but they will not have the expertise a melanoma specialist will. I can't stress enough the importance of having someone who is up on this beast.

        Also, since I don't know what you read on the Internet, remember to take what you read with a grain of salt, it may or may not be accurate.  Remember that we are all different even if you did read an accurate article.  Remember "might" is not "is." Don't go down that road and attach "definite" to every "maybe" out there…another reason you need a melanoma specialist!  Notice I'm really serious about this.

        My mole started changing March 2008, was removed at an urgent care in July 2008…4 months…at the time it was removed I actually had a September 2008 appt to have a derm remove it (story in a link in the blog link in my signature), which would have been 6 months had I gone.  My melanoma spec. surgeon told me that wouldn't have made a difference, the cancer still would have been only in the first sentinel…it may have been bigger, but it wouldn't have spread to a second node in that time frame.  Because we're all different, I can't tell you that would apply to you, but I can tell you that you can't go back and redo this time of your life.  You've got to move forward from where you are right now and you should move forward with a melanoma specialist by your side.

        You've learned, like the rest of us, the importance of keeping a vigilant check and having suspicious things removed, even insisting on it when your derm doesn't see the necessity…that insistance on your part will save your life.  Get a specialist!  And a dermatologist that specializes in melanoma.  They exist!

        Place your anxieties where it will do some good, and that's in gathering facts and making wise decisions.  You've got tests coming up where you'll need to keep your wits.  Focus your fears in a positive direction.  And, in case I forgot to mention: get a melanoma specialist for your surgeon and one for your dermatologist.  Your regular will understand and if he or she doesnt' insist on it then you know you really need a specialist!

        All the best.

        Carol

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      jimjoeb
      Participant

      Thanks so much for the fast reply. I think that my surgeon for the SNB is a general surgeon but I'm not sure. I'll know more tomorrow.

      At this point, I'm feeling supported. My dermatologist used her personal influence to accelerate the appointment with the surgeon and I just got a call from my family doctor to check in. She hasn't seen any of the facts yet but promised to let me know each time she received something new.

       

      My anxieties are from two directions. One, the length of time since I first noticed it to when it was removed (at least 7 months). Also, I am closely monitored for abnormalities in both breasts. No cancer yet. I read one internet article that said that there might be a connection.

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      jimjoeb
      Participant

      Important advice. I'll listen to it!

       

      I'll keep posting my story here. It does help. :-)

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        Carol Taylor
        Participant

        Smart. On both counts!  :)

        Keep us up on what happens and this is a good place for venting, empathy, and a kick in the butt if needed (though not too swift a kick).  There's a vast amount of knowledge here, there are some who are extremely good at the medical stuff and can help ou understand reports when those start coming in…I'm not one of them.

        Grace and peace and get some rest.

        Carol

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        Carol Taylor
        Participant

        Smart. On both counts!  :)

        Keep us up on what happens and this is a good place for venting, empathy, and a kick in the butt if needed (though not too swift a kick).  There's a vast amount of knowledge here, there are some who are extremely good at the medical stuff and can help ou understand reports when those start coming in…I'm not one of them.

        Grace and peace and get some rest.

        Carol

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      jimjoeb
      Participant

      Important advice. I'll listen to it!

       

      I'll keep posting my story here. It does help. :-)

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      Carmon in NM
      Participant

      Hello and as others have said, I'm so sorry you have reason to join us here. Getting that diagnosis of melanoma is a primal fear response that we all have experienced and that is difficult for anyone else to understand. You will get through it though and at some point reach a place where you are back living life with hope and joy. That may seem impossible now but it really does happen!

      The lesion I was diagnosed from was on my upper left arm and in photos taken 11 years ago it was already there. I even had it biopsied five years before I was diagnosed and was told to 'just watch it'. When it became ulcerated I had my primary care doctor remove it with a large margin in September 2008. He was certain it was basil cell so we were both in shock that it was melanoma after being there for so long without changes and having had a biopsy.

      I share that with you in hopes of giving you some calm that in my case, the lesion was there at least six years before it showed changes. I did have one sentinel node positive for micro metastasis of 2-3 cells each which put me at stage 3b in September 2008.

      Just breathe and as others have said, learn as much as you can even though it is scarey and don't let yourself get caught up in statistics! A wole lot of us here have outlived the statistics that came with our diagnosis and we all intend to keep doing so!

      Carmon in NM

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      Carmon in NM
      Participant

      Hello and as others have said, I'm so sorry you have reason to join us here. Getting that diagnosis of melanoma is a primal fear response that we all have experienced and that is difficult for anyone else to understand. You will get through it though and at some point reach a place where you are back living life with hope and joy. That may seem impossible now but it really does happen!

      The lesion I was diagnosed from was on my upper left arm and in photos taken 11 years ago it was already there. I even had it biopsied five years before I was diagnosed and was told to 'just watch it'. When it became ulcerated I had my primary care doctor remove it with a large margin in September 2008. He was certain it was basil cell so we were both in shock that it was melanoma after being there for so long without changes and having had a biopsy.

      I share that with you in hopes of giving you some calm that in my case, the lesion was there at least six years before it showed changes. I did have one sentinel node positive for micro metastasis of 2-3 cells each which put me at stage 3b in September 2008.

      Just breathe and as others have said, learn as much as you can even though it is scarey and don't let yourself get caught up in statistics! A wole lot of us here have outlived the statistics that came with our diagnosis and we all intend to keep doing so!

      Carmon in NM

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      Lisa13
      Participant

      I'm from Toronto and was recently diagnosed with Stage 3c melanoma.  My surgery was performed by a surgical oncologist who specializes in melanoma and my oncologist specializes in melanoma, so I think it's VERY important to be treated by people who know what they're dealing with.

      It's hard not to be scared, but hang in there until you know the results from all the tests.   The important thing now is that you're moving through the system very quickly as I was as well.   Once the surgery is done and other tests, you can move forward with treatment.  As a fellow Canadian, I'm here if you have any questions about how they do things in Canada.  I never had a Sentinel Node Biopsy – a PETscan confirmed melanoma in my lymph nodes, so the day my melanoma was removed, so were all my groin lymph nodes. 

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        Terra
        Participant

        Hi, I am from Belleville, my husband has been dealing with melanoma since 2001, he is now stage 4 and on a trial at PMH in TO.  Sorry, I don't have a chance to say much right now or to read all the posts you have received but feel free to email me and also contact/search the Melanoma Network of Canada, Annette Cyr is the chair, an excellent organization that will answer all your questions about treatment in Canada and keep posting here for info and inspriation.

        Terra

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        jimjoeb
        Participant

        I can't begin to tell you important all this support it is. I'm particularly grateful to hear from Canadians who may be able to help me connect with the right resources.

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        jimjoeb
        Participant

        I can't begin to tell you important all this support it is. I'm particularly grateful to hear from Canadians who may be able to help me connect with the right resources.

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        Terra
        Participant

        Hi, I am from Belleville, my husband has been dealing with melanoma since 2001, he is now stage 4 and on a trial at PMH in TO.  Sorry, I don't have a chance to say much right now or to read all the posts you have received but feel free to email me and also contact/search the Melanoma Network of Canada, Annette Cyr is the chair, an excellent organization that will answer all your questions about treatment in Canada and keep posting here for info and inspriation.

        Terra

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      Lisa13
      Participant

      I'm from Toronto and was recently diagnosed with Stage 3c melanoma.  My surgery was performed by a surgical oncologist who specializes in melanoma and my oncologist specializes in melanoma, so I think it's VERY important to be treated by people who know what they're dealing with.

      It's hard not to be scared, but hang in there until you know the results from all the tests.   The important thing now is that you're moving through the system very quickly as I was as well.   Once the surgery is done and other tests, you can move forward with treatment.  As a fellow Canadian, I'm here if you have any questions about how they do things in Canada.  I never had a Sentinel Node Biopsy – a PETscan confirmed melanoma in my lymph nodes, so the day my melanoma was removed, so were all my groin lymph nodes. 

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      jimjoeb
      Participant

      Some good news! I just met with my surgeon who is a specialist in melanoma. She had the pathology report and provided me with an explanation and a copy.

      The peripheral margins are uninvolved by invasive melanoma. The distance of the melanoma from closest peripheral margin is 1.5mm and deep margin is 1 mm.  The mitotic index is 5 mitoses/mm2. The pathologic stagin is PT2A. She didn't explain what that was. Anyone can help me?

      She explained that the pathology implies that they got it all but we are still going to proceed with the original plan.

      She will proceed with the surgery to increase the margin. She will also do a SNB. Because of the location she will do it in two phases. I will first have a procedure to identify the sentinal nodes and then the surgery to increase the margin and remove the node(s). She will debrief me when the results are back and automatically refer me to a melanoma oncologist, irrespective of the results.

      I feel that there is some room for optimism. I'm still proceeding with the CT-scan tomorrow night.

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      jimjoeb
      Participant

      Some good news! I just met with my surgeon who is a specialist in melanoma. She had the pathology report and provided me with an explanation and a copy.

      The peripheral margins are uninvolved by invasive melanoma. The distance of the melanoma from closest peripheral margin is 1.5mm and deep margin is 1 mm.  The mitotic index is 5 mitoses/mm2. The pathologic stagin is PT2A. She didn't explain what that was. Anyone can help me?

      She explained that the pathology implies that they got it all but we are still going to proceed with the original plan.

      She will proceed with the surgery to increase the margin. She will also do a SNB. Because of the location she will do it in two phases. I will first have a procedure to identify the sentinal nodes and then the surgery to increase the margin and remove the node(s). She will debrief me when the results are back and automatically refer me to a melanoma oncologist, irrespective of the results.

      I feel that there is some room for optimism. I'm still proceeding with the CT-scan tomorrow night.

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        washoegal
        Participant

        It sounds like you have a really good handle on things and I am so happy to hear you sound optimistic.  Everything seems to be happening exactly the way it should be.  You have a relatively low mitotic rate (rate of spread) and your tumor was not very deep so I agree you should be optimistic.  Hopefully your SNB will be all clear (I suspect it will be) and you can give a big sigh of relief!  You will find that the SNB is s fairly easy surgery but you'll be surprised at how big the margins/scar is from the original tumor. 

        Another word of warning, folks get really hung up on little blips on CT sans.  Ct scans often show false positives and other irregularities, don't try to interpret anything yourself.  Talk to your doctor.

         

        Good Luck,

        Mary

        Stage 3

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        washoegal
        Participant

        It sounds like you have a really good handle on things and I am so happy to hear you sound optimistic.  Everything seems to be happening exactly the way it should be.  You have a relatively low mitotic rate (rate of spread) and your tumor was not very deep so I agree you should be optimistic.  Hopefully your SNB will be all clear (I suspect it will be) and you can give a big sigh of relief!  You will find that the SNB is s fairly easy surgery but you'll be surprised at how big the margins/scar is from the original tumor. 

        Another word of warning, folks get really hung up on little blips on CT sans.  Ct scans often show false positives and other irregularities, don't try to interpret anything yourself.  Talk to your doctor.

         

        Good Luck,

        Mary

        Stage 3

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        Carol Taylor
        Participant

        Friend,

        There's ALWAYS room for optimism and hope! Glad you got some good news and you're moving in a way you're comfortable with.

        All the best!

        Carol

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        Carol Taylor
        Participant

        Friend,

        There's ALWAYS room for optimism and hope! Glad you got some good news and you're moving in a way you're comfortable with.

        All the best!

        Carol

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      jimjoeb
      Participant

      Thanks Mary!

      The surgeon said that she would take 1-2 cm, probably closer to the 2 to be sure. She gave me a heads up about the scar but I'm not concerned. Even if it was on a visible part of my anatomy, which it's not, I wouldn't care. I'm all about survival! I'm not sure how much of a scar there will be for the SNB because she doesn't know exactly where or how many. I'll have to wait and see. I may now more after the procedure with the radiologist. In the meantime, I'll sleep a bit better tonight.

      Take care yourself!!

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      jimjoeb
      Participant

      Thanks Mary!

      The surgeon said that she would take 1-2 cm, probably closer to the 2 to be sure. She gave me a heads up about the scar but I'm not concerned. Even if it was on a visible part of my anatomy, which it's not, I wouldn't care. I'm all about survival! I'm not sure how much of a scar there will be for the SNB because she doesn't know exactly where or how many. I'll have to wait and see. I may now more after the procedure with the radiologist. In the meantime, I'll sleep a bit better tonight.

      Take care yourself!!

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      Sharyn
      Participant

      Hi Jimjoeb,

      I don't have much more to add to what everyone else has already said, except that I agree with them all. I also wanted to reiterate what Terra said — Google the Melanoma Network of Canada and get on board. I am from Mount Pearl, NL (adjacent to St. John's), and I frequent both the MRF and the MNC sites. Both are quite good. I have been dealing with this for over 5 years, and I credit these sites as being my passport to treatment not available here in Nfld. Right now, I'm involved in a clinical trial with ipilimumab in Montreal.  Hang in there, buddy! You'll be fine!

      Hugs

      Sharyn, Stage IV

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      Sharyn
      Participant

      Hi Jimjoeb,

      I don't have much more to add to what everyone else has already said, except that I agree with them all. I also wanted to reiterate what Terra said — Google the Melanoma Network of Canada and get on board. I am from Mount Pearl, NL (adjacent to St. John's), and I frequent both the MRF and the MNC sites. Both are quite good. I have been dealing with this for over 5 years, and I credit these sites as being my passport to treatment not available here in Nfld. Right now, I'm involved in a clinical trial with ipilimumab in Montreal.  Hang in there, buddy! You'll be fine!

      Hugs

      Sharyn, Stage IV

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      jimjoeb
      Participant

      Thanks so much Sharyn. I have registered on the site. There is a lot of information but not as much activity on the discussion area. That site and this one have been important sources of reliable information as the different pieces of information emerge for my own case. It helps me to understand what I am learning and to ask the right questions. It will also help me to choose the treatment options when I get to that point.

      One thing that I'm going to follow up right away is to track down the names of melanoma oncologists in Ottawa. I definitely want to be sure to be referred to one of them after my surgery.

      You look after yourself. You are experiencing some frightening things yourself. The courage of people like yourself is extraordinary and a wonderful example for newly diagnosed people like me.

      All the very best with you current treatment!

      Joslyn

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      jimjoeb
      Participant

      Thanks so much Sharyn. I have registered on the site. There is a lot of information but not as much activity on the discussion area. That site and this one have been important sources of reliable information as the different pieces of information emerge for my own case. It helps me to understand what I am learning and to ask the right questions. It will also help me to choose the treatment options when I get to that point.

      One thing that I'm going to follow up right away is to track down the names of melanoma oncologists in Ottawa. I definitely want to be sure to be referred to one of them after my surgery.

      You look after yourself. You are experiencing some frightening things yourself. The courage of people like yourself is extraordinary and a wonderful example for newly diagnosed people like me.

      All the very best with you current treatment!

      Joslyn

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      jimjoeb
      Participant

      I received my date for surgery today: May 3. That will be for the wide incisions and to remove the LN(s). I have a separate appointment this Friday with the radiologist to map the SN(s) before the surgery. The radiologist has told me that she will use 4 injections and the procedure will take an hour to an hour and a half. Has anyone done the two step process before? Anything else that I should expect for step 1. Will I be told how many nodes and where they are?

       

      Also, I had my CT-scan last Thursday evening. I expect the results before the end of the week. I think I'm more concerned that sometihng will show related to my breasts that are being monitored rather than something related to the melanoma. How much information can I expect from a CT-Scan.

      Joslyn in Ottawa

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        ValinMtl
        Participant

        Hi Joslyn.  Glad to hear that your surgery is booked!   I can only reiterate what others have said…keep abreast of everything and most importantly ask for copies of all your pathology reports etc….you are entitled to to them and I always ask for mine.  A CT-scan is good but depending on your results, if necessary, you might consider a Pet scan as well.  I believe in Ontario, they will only do them under certain guidelines but that is something you can check out with the Melanoma Network of Canada.  I do not know what clinical trials there are in Ottawa but definitely some at Princess Margaret in Toronto and Royal Victoria in Montreal.  Actually, I am on the same trial as my friend Sharyn from Newfoundland…I go for 2nd treatment of 2nd round of iplimumab/yervoy on Thursday.  Sharyn comes in from Newfoundland and I did meet another gentleman waiting for a CT scan who came from Ottawa for the clinical trial that he was on for his type of cancer.

        Thinking of you during this stressful time, please keep us posted.  Val in Montreal (stage IV)

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        ValinMtl
        Participant

        Hi Joslyn.  Glad to hear that your surgery is booked!   I can only reiterate what others have said…keep abreast of everything and most importantly ask for copies of all your pathology reports etc….you are entitled to to them and I always ask for mine.  A CT-scan is good but depending on your results, if necessary, you might consider a Pet scan as well.  I believe in Ontario, they will only do them under certain guidelines but that is something you can check out with the Melanoma Network of Canada.  I do not know what clinical trials there are in Ottawa but definitely some at Princess Margaret in Toronto and Royal Victoria in Montreal.  Actually, I am on the same trial as my friend Sharyn from Newfoundland…I go for 2nd treatment of 2nd round of iplimumab/yervoy on Thursday.  Sharyn comes in from Newfoundland and I did meet another gentleman waiting for a CT scan who came from Ottawa for the clinical trial that he was on for his type of cancer.

        Thinking of you during this stressful time, please keep us posted.  Val in Montreal (stage IV)

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        kbc123
        Participant

        Hi Joslyn –

        I just recently had the two part SNB.(January and Feburary)   For me, they did that because my mole/melanoma was directly on the middle of my back so to know which way to look for your sentinal node is basically impossible.  My doctor told me they do mapping first to get a clue as to where the dye will go (under one arm, both arms, groin etc…) Fortunately my dye went to just one arm.  You will get four injections at the site on Friday (that was a 1 1/2 to 2 hr appt) and then four more injections on surgery day.  Just to give you the facts, the test is a bit uncomfortable, but the injections are quick and there is no use worrying or complaining about it, because in our case, it is what it is !  You have to get through it to move on with the process. 

        I hope all goes well for you.  I am in my second opinion stage right now. It's so funny how you can get so many opinions from just a few doctors on what to do next.

        Keep us posted and good luck with it all..

        Kathy

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        kbc123
        Participant

        Hi Joslyn –

        I just recently had the two part SNB.(January and Feburary)   For me, they did that because my mole/melanoma was directly on the middle of my back so to know which way to look for your sentinal node is basically impossible.  My doctor told me they do mapping first to get a clue as to where the dye will go (under one arm, both arms, groin etc…) Fortunately my dye went to just one arm.  You will get four injections at the site on Friday (that was a 1 1/2 to 2 hr appt) and then four more injections on surgery day.  Just to give you the facts, the test is a bit uncomfortable, but the injections are quick and there is no use worrying or complaining about it, because in our case, it is what it is !  You have to get through it to move on with the process. 

        I hope all goes well for you.  I am in my second opinion stage right now. It's so funny how you can get so many opinions from just a few doctors on what to do next.

        Keep us posted and good luck with it all..

        Kathy

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      jimjoeb
      Participant

      I received my date for surgery today: May 3. That will be for the wide incisions and to remove the LN(s). I have a separate appointment this Friday with the radiologist to map the SN(s) before the surgery. The radiologist has told me that she will use 4 injections and the procedure will take an hour to an hour and a half. Has anyone done the two step process before? Anything else that I should expect for step 1. Will I be told how many nodes and where they are?

       

      Also, I had my CT-scan last Thursday evening. I expect the results before the end of the week. I think I'm more concerned that sometihng will show related to my breasts that are being monitored rather than something related to the melanoma. How much information can I expect from a CT-Scan.

      Joslyn in Ottawa

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      jimjoeb
      Participant

      Thanks for this Kathy! Every bit of info helps fill in the gap of knowledge and makes the overall less stressful.

      My site is in the groin area and very close to lymph nodes. My surgeon doesn't want to risk not getting a proper map by doing it the day of the surgery and to make sure that she has schedule enough time for the procedure. On Friday it wil be the radioactive substance. On surgery day, the infamous blue dye.

      I'm in your camp reference the possible discomfort. So what! I'll tolerate almost anything to be sure to get a good test and accurate results. One question that I will be sure to ask is if they will check to see if the radioactive substance wen to any node in my body, even though the likelihood is lymph nodes in the groin.

      Did they tell you right away which node(s) the radioactive substance went to?

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        kbc123
        Participant

        I felt the same way.  You have to do what you have to do.  Period.  No use complaining about it or worrying about it.  You will get thru the test just fine.

        When I had the mapping done, they gave me x-ray films of the mapping which showed it as well but the radiologist told me on the table that it was all going to the left arm. 

        On the day of my surgery, they told me that I was having both left and right arms done?  I questioned them and questioned them.  Finally my surgeon came in and told them NO just the left.  And that was that.  When I had the surgery, he took out the sentinal node as well as one other that had a tinge of the blue dye.  Unfortunately (or fortunately – it is better than having full node invasion)  they did find something on the pathology, with that immunostaining that they do.  Which this is making life more complicated for me because now I have to decide whether to have all of the nodes out or not.  I went to New York and am being evaluated by a melanoma specialist there as well as a surgeon.  He is doing more extensive pathology (measurements and all biological stuff) with the sentinal nodes to give me a better idea as to what to do now.  Its a crazy, crazy time right now and I wish I could get a better mental hold on all of this…Scary stuff.

        So that is my story.  Ask away if you are wondering about anything else. 

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        kbc123
        Participant

        I felt the same way.  You have to do what you have to do.  Period.  No use complaining about it or worrying about it.  You will get thru the test just fine.

        When I had the mapping done, they gave me x-ray films of the mapping which showed it as well but the radiologist told me on the table that it was all going to the left arm. 

        On the day of my surgery, they told me that I was having both left and right arms done?  I questioned them and questioned them.  Finally my surgeon came in and told them NO just the left.  And that was that.  When I had the surgery, he took out the sentinal node as well as one other that had a tinge of the blue dye.  Unfortunately (or fortunately – it is better than having full node invasion)  they did find something on the pathology, with that immunostaining that they do.  Which this is making life more complicated for me because now I have to decide whether to have all of the nodes out or not.  I went to New York and am being evaluated by a melanoma specialist there as well as a surgeon.  He is doing more extensive pathology (measurements and all biological stuff) with the sentinal nodes to give me a better idea as to what to do now.  Its a crazy, crazy time right now and I wish I could get a better mental hold on all of this…Scary stuff.

        So that is my story.  Ask away if you are wondering about anything else. 

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      jimjoeb
      Participant

      Thanks for this Kathy! Every bit of info helps fill in the gap of knowledge and makes the overall less stressful.

      My site is in the groin area and very close to lymph nodes. My surgeon doesn't want to risk not getting a proper map by doing it the day of the surgery and to make sure that she has schedule enough time for the procedure. On Friday it wil be the radioactive substance. On surgery day, the infamous blue dye.

      I'm in your camp reference the possible discomfort. So what! I'll tolerate almost anything to be sure to get a good test and accurate results. One question that I will be sure to ask is if they will check to see if the radioactive substance wen to any node in my body, even though the likelihood is lymph nodes in the groin.

      Did they tell you right away which node(s) the radioactive substance went to?

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      jimjoeb
      Participant

      It's all very scary isn't it. You're right, I'll do what I need to do and I will get the very best advice that I can access.

      It is a crazy, anxious filled time. Be courageous and as level headed as you can. Do you have someone you trust who can support you emotionally and with whom you can have the discussions about which way to go? Just having the ability to speak to my husband openly is extremely important to my state of mind as I move carefully from one day and one decision at a time.

      This discussion group is also now an important part of my support. The chance to link with others, to hear your story and see the courage and humour shown by others helps to ground me.

      Take heart! I hope the specialist in New York provides you with an options that make sense to you.

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      jimjoeb
      Participant

      It's all very scary isn't it. You're right, I'll do what I need to do and I will get the very best advice that I can access.

      It is a crazy, anxious filled time. Be courageous and as level headed as you can. Do you have someone you trust who can support you emotionally and with whom you can have the discussions about which way to go? Just having the ability to speak to my husband openly is extremely important to my state of mind as I move carefully from one day and one decision at a time.

      This discussion group is also now an important part of my support. The chance to link with others, to hear your story and see the courage and humour shown by others helps to ground me.

      Take heart! I hope the specialist in New York provides you with an options that make sense to you.

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      jimjoeb
      Participant

      Just got off the phone from my dermatologist who called with the CT-scan and blood test results. Everything is negative. Yeah!!!. I'm still proceeding with the wide excision surgery and the SLNB.

      I've also made arrangements to have shave biopsys of some other moles that I don't like in the same general area as the primary mole that started all of this.

      Also, she is referring me to a melanoma oncologist at the Ottawa Regional Cancer Centre.

      I'm feeling about as good as one can. I don't expect more results for another month, after the surgery.

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        Carol Taylor
        Participant

        Hallelujah for your good news!  Hallelujah for your good common sense!  Stay smart and on top of things.

        Grace and peace,

        Carol

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        Carol Taylor
        Participant

        Hallelujah for your good news!  Hallelujah for your good common sense!  Stay smart and on top of things.

        Grace and peace,

        Carol

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        kbc123
        Participant

        All Clear ! TERRIFIC…That is wonderful news.  Keep us posted.,!

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        jimjoeb
        Participant

        Does this mean that I am not Stage IV?

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        ShariC
        Participant

        Hi – I don't know if I have much to add medically, but I wanted to comment on the emotional roller coaster.  I got this advice early on in my diagnosis:  'This first part (the diagnosis) is the HARDEST part.'.  Its true.  Even if I do ever progress to Stage IV and the prognosis gets worse, I now know from perspective, that the first few months is a nightmare.  So, just please try to do the best you can, and KNOW that it gets better.  We adjust, we learn, and soon you'll be able to "LIVE" with this disease being a part of your life every day, or your history (and potentially your future).  Do the best you can – take people with you to appointments (you won't be able to process all of the information at once). 

        One of the best things I did was "assign" my best friend the task of doing the Internet research for me.  I knew I couldn't handle the myriad of sites I would run across or the things I was reading.  So, she did the hard part…filtering through the information that is out there (some of it really scary) and presenting me with the stuff she thought was the most important for me to know.  But, sometimes she waited to talk to me about it until the timing was right.  One of the best gifts of support I could have gotten. 

        Do the best you can, but realize that in a couple of months, you'll be able to think much more clearly.

        Medically – You won't really know much about your treatment options and prognosis (although, we don't use that word much with melanoma because it can be so variable and random), until the pathology report is back from your surgery.  That report is KEY.  It will tell you if and to what extent lymph nodes are involved and they'll stage your primary.  Also…they won't be able to tell you ahead of time how many nodes they'll take out…my surgeon took all that she could find from my armpit – 22…but, that wasn't all of them, and that's ok.  Be best thing is to have your melanoma oncologist (specialist) interpret that report for you.  I had my surgeon read through it…and we really didn't know what it meant, treatment wise. 

        I've gone on and on…sorry!  My Best – Shari

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        ShariC
        Participant

        Hi – I don't know if I have much to add medically, but I wanted to comment on the emotional roller coaster.  I got this advice early on in my diagnosis:  'This first part (the diagnosis) is the HARDEST part.'.  Its true.  Even if I do ever progress to Stage IV and the prognosis gets worse, I now know from perspective, that the first few months is a nightmare.  So, just please try to do the best you can, and KNOW that it gets better.  We adjust, we learn, and soon you'll be able to "LIVE" with this disease being a part of your life every day, or your history (and potentially your future).  Do the best you can – take people with you to appointments (you won't be able to process all of the information at once). 

        One of the best things I did was "assign" my best friend the task of doing the Internet research for me.  I knew I couldn't handle the myriad of sites I would run across or the things I was reading.  So, she did the hard part…filtering through the information that is out there (some of it really scary) and presenting me with the stuff she thought was the most important for me to know.  But, sometimes she waited to talk to me about it until the timing was right.  One of the best gifts of support I could have gotten. 

        Do the best you can, but realize that in a couple of months, you'll be able to think much more clearly.

        Medically – You won't really know much about your treatment options and prognosis (although, we don't use that word much with melanoma because it can be so variable and random), until the pathology report is back from your surgery.  That report is KEY.  It will tell you if and to what extent lymph nodes are involved and they'll stage your primary.  Also…they won't be able to tell you ahead of time how many nodes they'll take out…my surgeon took all that she could find from my armpit – 22…but, that wasn't all of them, and that's ok.  Be best thing is to have your melanoma oncologist (specialist) interpret that report for you.  I had my surgeon read through it…and we really didn't know what it meant, treatment wise. 

        I've gone on and on…sorry!  My Best – Shari

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        jimjoeb
        Participant

        Does this mean that I am not Stage IV?

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        kbc123
        Participant

        All Clear ! TERRIFIC…That is wonderful news.  Keep us posted.,!

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      jimjoeb
      Participant

      Just got off the phone from my dermatologist who called with the CT-scan and blood test results. Everything is negative. Yeah!!!. I'm still proceeding with the wide excision surgery and the SLNB.

      I've also made arrangements to have shave biopsys of some other moles that I don't like in the same general area as the primary mole that started all of this.

      Also, she is referring me to a melanoma oncologist at the Ottawa Regional Cancer Centre.

      I'm feeling about as good as one can. I don't expect more results for another month, after the surgery.

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      jimjoeb
      Participant

      Thank you so much for your reply!

      That's very encouraging in terms of how I'm feeling. It also matches my instincts and experience. It's the not knowing that makes it hard. Once I have the results, whatever they are, I can focus on the next steps, whatever they might be.

      So they big day for me will be May 13th, 10 days after my surgery. I know that by then I will know the pathology from my surgery of May 3. I can make it to there.

      All of the best to you!

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      jimjoeb
      Participant

      Thank you so much for your reply!

      That's very encouraging in terms of how I'm feeling. It also matches my instincts and experience. It's the not knowing that makes it hard. Once I have the results, whatever they are, I can focus on the next steps, whatever they might be.

      So they big day for me will be May 13th, 10 days after my surgery. I know that by then I will know the pathology from my surgery of May 3. I can make it to there.

      All of the best to you!

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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.

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