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Biopsies inconclusive…Is it wrong to hope for best??
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Biopsies inconclusive…Is it wrong to hope for best??

› Forums › General Melanoma Community › Biopsies inconclusive…Is it wrong to hope for best??

  • Post
    • September 19, 2012 at 9:23 pm
    KMT2003
    Participant
      This last month has been incredibly frustrating and stressful…I was dx stage 3 in June when melanoma was found in a lymph node in my neck with extra capsular extension. I then did radiation for 4 weeks 5 days a week. In August I went for prescreening tests since I was going to start the interferon/ipilimumab clinical trial. After all the tests, I met with my doctor who told me I could no longer be considered for the trial…they found areas of concern in my bones. Talk about a shock! We weren’t expecting that news at all. I was scheduled to do a biopsy of my lumbar area in my back.

      This last month has been incredibly frustrating and stressful…I was dx stage 3 in June when melanoma was found in a lymph node in my neck with extra capsular extension. I then did radiation for 4 weeks 5 days a week. In August I went for prescreening tests since I was going to start the interferon/ipilimumab clinical trial. After all the tests, I met with my doctor who told me I could no longer be considered for the trial…they found areas of concern in my bones. Talk about a shock! We weren’t expecting that news at all. I was scheduled to do a biopsy of my lumbar area in my back. FNA was done, waited for results, was told it showed a cluster of atypical cells with some maligmancy. However, it was inconclusive for melanoma. I had to go back and redo the biopsy to get more sample. I went back last week for the second biopsy and had to wait again for results. Today we went back to Moffitt to get results… Once again biopsy was inconclusive for melamona and didn’t have any atypical cells. Now I have to go and do an open bone biopsy so they can get a good look at the bone itself. However, in the last 2 weeks I have felt a small area of concern in my left breast get bigger. Doctor checked it today and could also tell it has grown so now we are going to biopsy that first instead of the open bone biopsy. He feels it will be much easier than the other procedure. If that comes back positive, we won’t have to do the bone biopsy. I am also B RAF positive. Is it wishful thinking that since both biopsies have come back inconclusive that maybe its not related to melanoma??? Maybe I will get to stay at stage 3 instead of progressing to stage 4? I’m trying to stay positive and not let this disease control me. Is it wrong to be hoping for the best??

      Kelly

    Viewing 8 reply threads
    • Replies
        • September 19, 2012 at 10:44 pm
        aldakota22
        Participant

          No Kelly it is not wrong to hope for the best.We all need hope thru this mess we face.Hope is what keeps me going as a stage 4 survivor.Right now you do not have any definitive answers.Like you I will both pray and hope that any news you get will only be good news.From one identical twin to another stay as positive as possible. Beat the Beast.   Al

          • September 19, 2012 at 10:44 pm
          aldakota22
          Participant

            No Kelly it is not wrong to hope for the best.We all need hope thru this mess we face.Hope is what keeps me going as a stage 4 survivor.Right now you do not have any definitive answers.Like you I will both pray and hope that any news you get will only be good news.From one identical twin to another stay as positive as possible. Beat the Beast.   Al

            • September 19, 2012 at 10:44 pm
            aldakota22
            Participant

              No Kelly it is not wrong to hope for the best.We all need hope thru this mess we face.Hope is what keeps me going as a stage 4 survivor.Right now you do not have any definitive answers.Like you I will both pray and hope that any news you get will only be good news.From one identical twin to another stay as positive as possible. Beat the Beast.   Al

              • September 19, 2012 at 10:54 pm
              Harry in Fair Oaks
              Participant

                From personal experience, I know that it's hard to get satisfactory specimens from the bone.  The soft tissue biopsy will likely be definitive.  There is nothing wrong with "wishful thinking" (also known as "hope") – as long as you also mentally prepare yourself for the other possibility.

                I am now more than 16 months into the GSK BRAF/MEK trial.  I had multiple bone and soft tissue mets diagnosed in 2011.  Just about everything is gone per my last scans.  If the biopsy result does not go your way, please look into this trial, as you state you are BRAF +.

                Best wishes,

                Harry

                • September 19, 2012 at 10:54 pm
                Harry in Fair Oaks
                Participant

                  From personal experience, I know that it's hard to get satisfactory specimens from the bone.  The soft tissue biopsy will likely be definitive.  There is nothing wrong with "wishful thinking" (also known as "hope") – as long as you also mentally prepare yourself for the other possibility.

                  I am now more than 16 months into the GSK BRAF/MEK trial.  I had multiple bone and soft tissue mets diagnosed in 2011.  Just about everything is gone per my last scans.  If the biopsy result does not go your way, please look into this trial, as you state you are BRAF +.

                  Best wishes,

                  Harry

                  • September 19, 2012 at 10:54 pm
                  Harry in Fair Oaks
                  Participant

                    From personal experience, I know that it's hard to get satisfactory specimens from the bone.  The soft tissue biopsy will likely be definitive.  There is nothing wrong with "wishful thinking" (also known as "hope") – as long as you also mentally prepare yourself for the other possibility.

                    I am now more than 16 months into the GSK BRAF/MEK trial.  I had multiple bone and soft tissue mets diagnosed in 2011.  Just about everything is gone per my last scans.  If the biopsy result does not go your way, please look into this trial, as you state you are BRAF +.

                    Best wishes,

                    Harry

                    • September 20, 2012 at 3:08 am
                    King
                    Participant

                      Hi Kellly,

                      Ever since I received your email this morning I've been thinking about you and wondering what you found out.   Big sigh…it has to be so frustrating.  You are getting lots of lessons in patience.  I didn't realize they were doing FNAs to obtain a sample for the bone biopsy.  I'm sorry to hear that you have an area of concern on your breast but it does make sense that a biopsy from the breast would be much easier to obtain.

                      I'm so sorry that you still have no answers.  I remember one time that someone told me that you have to face reality while maintaining hope.  There is no answer yet to know if it is wishful thinking or if it is fact.  But, also, please remember…Stage IV is not an automatic death sentence.  I've been Stage IV for 7 years now.

                      Do you know when the breast biopsy will be?  I hope you got some questions answered today even though you didn't have conclusive biopsy results.

                      Remember, I will be at Moffitt next Wednesday (26) to meet with Dr. Sondak.  He also is in the cutaneous clinic.

                      Being BRAF positive is good.  It will give you more options in the future if needed.

                      I'm guessing that you are going back to work tomorrow.  You are amazing.

                      Stay Strong
                      Kathie

                        • September 21, 2012 at 1:14 am
                        KMT2003
                        Participant
                          Biopsy is scheduled for Tuesday. Let’s hope it goes well. Yes I am still working…some days I wonder but for now it helps take my mind off things. Nothing like 19 5-6 yr olds to keep me busy. I do have my good days working while other days I am more tired and/or sore. Until we get results I probably will keep working. However, things could change once we finally get some answers. Thanks again Kathie for your support…your encouragement helps keep me positive! Hope all is well with you!

                          Kelly

                          • September 21, 2012 at 1:14 am
                          KMT2003
                          Participant
                            Biopsy is scheduled for Tuesday. Let’s hope it goes well. Yes I am still working…some days I wonder but for now it helps take my mind off things. Nothing like 19 5-6 yr olds to keep me busy. I do have my good days working while other days I am more tired and/or sore. Until we get results I probably will keep working. However, things could change once we finally get some answers. Thanks again Kathie for your support…your encouragement helps keep me positive! Hope all is well with you!

                            Kelly

                            • September 21, 2012 at 1:14 am
                            KMT2003
                            Participant
                              Biopsy is scheduled for Tuesday. Let’s hope it goes well. Yes I am still working…some days I wonder but for now it helps take my mind off things. Nothing like 19 5-6 yr olds to keep me busy. I do have my good days working while other days I am more tired and/or sore. Until we get results I probably will keep working. However, things could change once we finally get some answers. Thanks again Kathie for your support…your encouragement helps keep me positive! Hope all is well with you!

                              Kelly

                            • September 20, 2012 at 3:08 am
                            King
                            Participant

                              Hi Kellly,

                              Ever since I received your email this morning I've been thinking about you and wondering what you found out.   Big sigh…it has to be so frustrating.  You are getting lots of lessons in patience.  I didn't realize they were doing FNAs to obtain a sample for the bone biopsy.  I'm sorry to hear that you have an area of concern on your breast but it does make sense that a biopsy from the breast would be much easier to obtain.

                              I'm so sorry that you still have no answers.  I remember one time that someone told me that you have to face reality while maintaining hope.  There is no answer yet to know if it is wishful thinking or if it is fact.  But, also, please remember…Stage IV is not an automatic death sentence.  I've been Stage IV for 7 years now.

                              Do you know when the breast biopsy will be?  I hope you got some questions answered today even though you didn't have conclusive biopsy results.

                              Remember, I will be at Moffitt next Wednesday (26) to meet with Dr. Sondak.  He also is in the cutaneous clinic.

                              Being BRAF positive is good.  It will give you more options in the future if needed.

                              I'm guessing that you are going back to work tomorrow.  You are amazing.

                              Stay Strong
                              Kathie

                              • September 20, 2012 at 3:08 am
                              King
                              Participant

                                Hi Kellly,

                                Ever since I received your email this morning I've been thinking about you and wondering what you found out.   Big sigh…it has to be so frustrating.  You are getting lots of lessons in patience.  I didn't realize they were doing FNAs to obtain a sample for the bone biopsy.  I'm sorry to hear that you have an area of concern on your breast but it does make sense that a biopsy from the breast would be much easier to obtain.

                                I'm so sorry that you still have no answers.  I remember one time that someone told me that you have to face reality while maintaining hope.  There is no answer yet to know if it is wishful thinking or if it is fact.  But, also, please remember…Stage IV is not an automatic death sentence.  I've been Stage IV for 7 years now.

                                Do you know when the breast biopsy will be?  I hope you got some questions answered today even though you didn't have conclusive biopsy results.

                                Remember, I will be at Moffitt next Wednesday (26) to meet with Dr. Sondak.  He also is in the cutaneous clinic.

                                Being BRAF positive is good.  It will give you more options in the future if needed.

                                I'm guessing that you are going back to work tomorrow.  You are amazing.

                                Stay Strong
                                Kathie

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