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Sentinel node came back positive–need help
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Sentinel node came back positive–need help

› Forums › General Melanoma Community › Sentinel node came back positive–need help

  • Post
    • June 22, 2011 at 5:03 pm
    mother-to-be
    Participant

      Hi, I was recently diagnosed with superficial spreading melanoma on my upper left arm.  Breslow 1.1m, with ulceration and a high mitotic rate.  Last Friday, I did the SNP which initially came back negative.  The pathology report came back yesterday with 2 nests of activity, the largest one is .25mm, so it's very small.  I'm seeing an oncologist today and the cancer board meets on Friday to discuss the report and treatment options. I'm 40 years old and 7 (30 weeks) months pregnant with my first child.  

      Hi, I was recently diagnosed with superficial spreading melanoma on my upper left arm.  Breslow 1.1m, with ulceration and a high mitotic rate.  Last Friday, I did the SNP which initially came back negative.  The pathology report came back yesterday with 2 nests of activity, the largest one is .25mm, so it's very small.  I'm seeing an oncologist today and the cancer board meets on Friday to discuss the report and treatment options. I'm 40 years old and 7 (30 weeks) months pregnant with my first child.  

      What does this mean for me?  I don't have a stage yet but from what I'm reading on the internet it may be a stage III.  Please share your knowledge and advice.  Thank you in advance.  Michelle

    Viewing 19 reply threads
    • Replies
        • June 22, 2011 at 5:10 pm
        TracyLee
        Participant

          Please don't panic. I know you must be scared spitless, but take a deep breath.

          When do you see your doctor? If you are not comfortable with your current doctor, or want a second opinion, change doctors or ask for a referral.

          I would get a notebook, and write down questions as they occur to you. Take it to your appointments, every time. Have someone else go with you if at all possible. Even noting what the doctor tells me, I forget and often have to say "what did he/she say about…" to my friend/kid/husband. (This drives me nuts, as I'm NOT forgetful or disorganized).

          Relax as much as it is possible, being 7 months pregnant.

          Don't spend a lot of time on the Internet trying to research all of this stuff. It will merely scare you to death, confuse you, or worse. That is not helpful for you right now.

          There are many loving, kind, helpful people on this board. I'm sure they will chime in shortly. 

          Take care of yourself, you can and will get through this!

          TracyLee

          • June 22, 2011 at 5:10 pm
          TracyLee
          Participant

            Please don't panic. I know you must be scared spitless, but take a deep breath.

            When do you see your doctor? If you are not comfortable with your current doctor, or want a second opinion, change doctors or ask for a referral.

            I would get a notebook, and write down questions as they occur to you. Take it to your appointments, every time. Have someone else go with you if at all possible. Even noting what the doctor tells me, I forget and often have to say "what did he/she say about…" to my friend/kid/husband. (This drives me nuts, as I'm NOT forgetful or disorganized).

            Relax as much as it is possible, being 7 months pregnant.

            Don't spend a lot of time on the Internet trying to research all of this stuff. It will merely scare you to death, confuse you, or worse. That is not helpful for you right now.

            There are many loving, kind, helpful people on this board. I'm sure they will chime in shortly. 

            Take care of yourself, you can and will get through this!

            TracyLee

            • June 22, 2011 at 5:23 pm
            washoegal
            Participant

              You are at a very scary point for anyone.  I am sure it must be 1,000 times worse being pregnant but try the best you can not to worry for you and the baby.  I had 2 microscopic nodes come back positive.  I chose to have the remainder of my lymph nodes removed.  This is the hardest surgery and I'm not sure if it would be what you'd want to do when you are 7 months pregnant, it can wait until after you have the baby.  In fact, you don't necessarily have to have the surgery, you can "wait and watch" …. monitor the lymph nodes with a sonogram.  However, if you have someone to help, I would be all for getting the lymph nodes removed as soon as you are ready.

              If the remaining lymph nodes are clear you will be given more choices.  Nothing with Mel is Black and White, and the doctors never seem to recommend, they just give options. 

               

              But here's there good news.  I had my lymph nodes removed March of 2010 and as of my last scan in May I was clear.  I had no other treatment other than surgery.  You can do this, one step at a time.

              Good Luck,

              Mary

              Stage 3

              • June 22, 2011 at 5:23 pm
              washoegal
              Participant

                You are at a very scary point for anyone.  I am sure it must be 1,000 times worse being pregnant but try the best you can not to worry for you and the baby.  I had 2 microscopic nodes come back positive.  I chose to have the remainder of my lymph nodes removed.  This is the hardest surgery and I'm not sure if it would be what you'd want to do when you are 7 months pregnant, it can wait until after you have the baby.  In fact, you don't necessarily have to have the surgery, you can "wait and watch" …. monitor the lymph nodes with a sonogram.  However, if you have someone to help, I would be all for getting the lymph nodes removed as soon as you are ready.

                If the remaining lymph nodes are clear you will be given more choices.  Nothing with Mel is Black and White, and the doctors never seem to recommend, they just give options. 

                 

                But here's there good news.  I had my lymph nodes removed March of 2010 and as of my last scan in May I was clear.  I had no other treatment other than surgery.  You can do this, one step at a time.

                Good Luck,

                Mary

                Stage 3

                • June 22, 2011 at 6:27 pm
                mother-to-be
                Participant

                  TracyLee, Mary, thank you for your quick replies to my post.  I'm so appreciative; I can't express it well enough.  

                  Mary: can you tell me a bit more about the recovery for removing the lymph nodes?  I suspect that's where I'm headed first.  Also, I'm thinking they'll want to do a scan of some sort to determine whether there are any other sites in the body but the scans may not be safe for the baby. 

                  • June 22, 2011 at 6:27 pm
                  mother-to-be
                  Participant

                    TracyLee, Mary, thank you for your quick replies to my post.  I'm so appreciative; I can't express it well enough.  

                    Mary: can you tell me a bit more about the recovery for removing the lymph nodes?  I suspect that's where I'm headed first.  Also, I'm thinking they'll want to do a scan of some sort to determine whether there are any other sites in the body but the scans may not be safe for the baby. 

                      • June 22, 2011 at 7:22 pm
                      washoegal
                      Participant

                        I am  assuming your nodes are under arm as mine were.  If you did not have a hard time recovering from  your last surgeries than a complete lymph node dissection is not terrible.  You will be in the hospital over night.  The next day I was up walking around and feeling OK.  The uncomfortable part is the drain tube which stays in 2 weeks plus.  I was unlucky and would not stop draining, so after 25 days the surgeon finally pulled it out anyway for fear of infection. 

                         

                        What I would be more concerned about in your case is, if you have your lymph nodes removed now and you get any amount of lymphedema while you are nursing or your glands began to swell with milk you run the risk of getting mastitis.  I got it, and was I shocked…I have never had kids so it was something new to me.  My girlfriend laughed and said she got mastitis with each of her babies.  But if that's the worst of it, I suppose you'll be OK.

                         

                        I didn't get a CT/PET scan until about 3 months after all my surgeries were done.  And yes, I would worry about the baby, but I am sure the radiologist wouldn't do a procedure to risk the baby.

                         

                        Keep us posted.

                        Mary

                        • June 22, 2011 at 7:22 pm
                        washoegal
                        Participant

                          I am  assuming your nodes are under arm as mine were.  If you did not have a hard time recovering from  your last surgeries than a complete lymph node dissection is not terrible.  You will be in the hospital over night.  The next day I was up walking around and feeling OK.  The uncomfortable part is the drain tube which stays in 2 weeks plus.  I was unlucky and would not stop draining, so after 25 days the surgeon finally pulled it out anyway for fear of infection. 

                           

                          What I would be more concerned about in your case is, if you have your lymph nodes removed now and you get any amount of lymphedema while you are nursing or your glands began to swell with milk you run the risk of getting mastitis.  I got it, and was I shocked…I have never had kids so it was something new to me.  My girlfriend laughed and said she got mastitis with each of her babies.  But if that's the worst of it, I suppose you'll be OK.

                           

                          I didn't get a CT/PET scan until about 3 months after all my surgeries were done.  And yes, I would worry about the baby, but I am sure the radiologist wouldn't do a procedure to risk the baby.

                           

                          Keep us posted.

                          Mary

                        • June 22, 2011 at 6:33 pm
                        Carol Taylor
                        Participant

                          You've gotten good advice so I just want to be a supportive voice and back these two ladies up. I've been 3b since being diagnosed in late 2008, had 1 sentinel node that had mel in it, chose to have all removed in two surgeries and that's "all" I've done and have been ned since. I'd opt to have them removed as soon as you're on your feet and able after having your baby.

                          Take care of yourself, enjoy your remaining two months of pregnancy. Focus on baby and not on melanoma! Which, I'm aware will be easier said than done, but that little tyke ought to be kicking the mess out of you by now and will continue to and rolling around and/or whatever else yours is doing, so it may be pretty easy after all to focus on baby…baby may not give you much choice…which, right now, will be a blessing!

                          Take care and get the nodes removed and then you'll have less to worry about. It's probably the most agressive approach and that's what you want.

                          Lord, in Your mercy, be with our mom-to-be friend and her child through this season. Then, open the doors she needs opening and close those that need closing. Thank You. Amen.

                          Grace and peace,

                          Carol

                          • June 22, 2011 at 6:33 pm
                          Carol Taylor
                          Participant

                            You've gotten good advice so I just want to be a supportive voice and back these two ladies up. I've been 3b since being diagnosed in late 2008, had 1 sentinel node that had mel in it, chose to have all removed in two surgeries and that's "all" I've done and have been ned since. I'd opt to have them removed as soon as you're on your feet and able after having your baby.

                            Take care of yourself, enjoy your remaining two months of pregnancy. Focus on baby and not on melanoma! Which, I'm aware will be easier said than done, but that little tyke ought to be kicking the mess out of you by now and will continue to and rolling around and/or whatever else yours is doing, so it may be pretty easy after all to focus on baby…baby may not give you much choice…which, right now, will be a blessing!

                            Take care and get the nodes removed and then you'll have less to worry about. It's probably the most agressive approach and that's what you want.

                            Lord, in Your mercy, be with our mom-to-be friend and her child through this season. Then, open the doors she needs opening and close those that need closing. Thank You. Amen.

                            Grace and peace,

                            Carol

                            • June 22, 2011 at 9:50 pm
                            lhaley
                            Participant

                              I'm sorry you've had to join us. Your going through such a stress during what should be such a wonderful time in your life.

                              I'm giving you the profile name of a young women whose twin sister was 5 months pregnant when they discovered she was stage 3.  If you do a search on her and then put the curser over her name you will go to her profile. From there you can send her an e-mail.  She just posted to someone the other day.   I'm sure she will be able to tell you in more detail what her sister did.  

                              jtheisen29

                              I know in the past we have had other women in the same situation, I just can't remember their name and can't find them when I did a search. Hopefully someone else will come up with a name for you.

                              Wishing you the best in both the pregnancy and stopping mel in it's track.  In 2 weeks I will reach my 5th year anniversary as a stage IV survivor.   Let us know what the Dr suggests.

                              Linda

                              • June 22, 2011 at 9:50 pm
                              lhaley
                              Participant

                                I'm sorry you've had to join us. Your going through such a stress during what should be such a wonderful time in your life.

                                I'm giving you the profile name of a young women whose twin sister was 5 months pregnant when they discovered she was stage 3.  If you do a search on her and then put the curser over her name you will go to her profile. From there you can send her an e-mail.  She just posted to someone the other day.   I'm sure she will be able to tell you in more detail what her sister did.  

                                jtheisen29

                                I know in the past we have had other women in the same situation, I just can't remember their name and can't find them when I did a search. Hopefully someone else will come up with a name for you.

                                Wishing you the best in both the pregnancy and stopping mel in it's track.  In 2 weeks I will reach my 5th year anniversary as a stage IV survivor.   Let us know what the Dr suggests.

                                Linda

                                • June 23, 2011 at 12:56 am
                                Erin D
                                Participant
                                  I’m so sorry that you are going through this right now. I know how scared and uncertain you must be feeling. I was 32 weeks pregnant when I found out I was stage 3. A week later I had a c-section, and shortly after had lymph node dissection (right groin). My daughter is now 5 which means I’ve been cancer free for 5 years! I would be happy to talk to you if you want. Please know that you are in my thoughts and prayers~Erin
                                  [email protected]
                                  • June 23, 2011 at 12:56 am
                                  Erin D
                                  Participant
                                    I’m so sorry that you are going through this right now. I know how scared and uncertain you must be feeling. I was 32 weeks pregnant when I found out I was stage 3. A week later I had a c-section, and shortly after had lymph node dissection (right groin). My daughter is now 5 which means I’ve been cancer free for 5 years! I would be happy to talk to you if you want. Please know that you are in my thoughts and prayers~Erin
                                    [email protected]
                                    • June 23, 2011 at 11:28 pm
                                    mother-to-be
                                    Participant

                                      UPDATE….it's  been 24 hours of meeting with doctors.  My oncologist recommends delivering the baby early and beginning interferon, 20 days of high doses followed by a year of shots 3x a week.  I'm almost 30 weeks and my OB wants to hold off delivering the baby until 36 weeks.  Tomorrow the cancer boards meets to discuss and provide their recommendations.  I've also gotten a referral to a melanoma specialist but don't have an appt date yet.

                                      So, the doctors explain that the cancer found in the sentinel node is microscopic.  In the not so recent past, they would not have been able to detect the cells in the path.  it looks like my options include 1) watch and wait, 2) remove more lymph nodes (although the doctors say that the cells could have gone anywhere, not necessarily the closest nodes) and/or 3) do interferon. 

                                      I've done some reading on interferon and it sounds horrible, especially with a new born.  However, I want my baby to know me so I'm willing to do anything to make that happen.

                                      Your experience, insights are so appreciated.  

                                      Erin–I will reach out to you.  Thank you for the offer.

                                      Michelle

                                      • June 23, 2011 at 11:28 pm
                                      mother-to-be
                                      Participant

                                        UPDATE….it's  been 24 hours of meeting with doctors.  My oncologist recommends delivering the baby early and beginning interferon, 20 days of high doses followed by a year of shots 3x a week.  I'm almost 30 weeks and my OB wants to hold off delivering the baby until 36 weeks.  Tomorrow the cancer boards meets to discuss and provide their recommendations.  I've also gotten a referral to a melanoma specialist but don't have an appt date yet.

                                        So, the doctors explain that the cancer found in the sentinel node is microscopic.  In the not so recent past, they would not have been able to detect the cells in the path.  it looks like my options include 1) watch and wait, 2) remove more lymph nodes (although the doctors say that the cells could have gone anywhere, not necessarily the closest nodes) and/or 3) do interferon. 

                                        I've done some reading on interferon and it sounds horrible, especially with a new born.  However, I want my baby to know me so I'm willing to do anything to make that happen.

                                        Your experience, insights are so appreciated.  

                                        Erin–I will reach out to you.  Thank you for the offer.

                                        Michelle

                                          • June 23, 2011 at 11:43 pm
                                          Carol Taylor
                                          Participant

                                            Michelle,

                                            One, no matter what you choose, nothing in life is guaranteed and that includes treatment options.

                                            Two, please don't make any decisions until you tak with that melanoma specialist! Call tomorrow, explain your situation and get an appt asap.

                                            Three, after you've talked with a specialist, discuss what's said with your ob/gyn and get his/her input about what's best for your baby. Be sure to bring your ob into the discussion, and then, if you opt for any chemical treatment, bring your pediatrician to the table if you want to nurse.

                                            Be as fully informed as you can. Calm down. After you're more fully informed then you and your husband can weigh pros and cons and make as wise a decision as possible.

                                            Frankly, I'm 3b, have been since diagnosis late 2008 and have been ned with "only" two surgeries. I opted not to do Interferon and have never regretted it. That's me though. There are no guarantees no matter what you decide, but then again, there are no guarantees at all in life.

                                            Praying for wisdom and guidance and your baby's health as well as yours.

                                            Lord, in Your mercy, grant Your wisdom and guidance indeed to Your daughter. Thank You. Amen and Amen!

                                            Grace and peace,

                                            Carol

                                            • June 23, 2011 at 11:43 pm
                                            Carol Taylor
                                            Participant

                                              Michelle,

                                              One, no matter what you choose, nothing in life is guaranteed and that includes treatment options.

                                              Two, please don't make any decisions until you tak with that melanoma specialist! Call tomorrow, explain your situation and get an appt asap.

                                              Three, after you've talked with a specialist, discuss what's said with your ob/gyn and get his/her input about what's best for your baby. Be sure to bring your ob into the discussion, and then, if you opt for any chemical treatment, bring your pediatrician to the table if you want to nurse.

                                              Be as fully informed as you can. Calm down. After you're more fully informed then you and your husband can weigh pros and cons and make as wise a decision as possible.

                                              Frankly, I'm 3b, have been since diagnosis late 2008 and have been ned with "only" two surgeries. I opted not to do Interferon and have never regretted it. That's me though. There are no guarantees no matter what you decide, but then again, there are no guarantees at all in life.

                                              Praying for wisdom and guidance and your baby's health as well as yours.

                                              Lord, in Your mercy, grant Your wisdom and guidance indeed to Your daughter. Thank You. Amen and Amen!

                                              Grace and peace,

                                              Carol

                                            • June 24, 2011 at 2:41 am
                                            bestday
                                            Participant

                                              Michelle,

                                              I am a melanoma survivor and although we each have our individual worries and loved ones to live for, your posting tugged at my heart. I have a positive feeling for you and your unborn child. If you do have to have an early birth, be reassured that NICU's have come a long way over the years — my first born was 29 weeks (28 years ago) — and her two daughters were born at 27 & 28 weeks — all healthy and we are blessed. I'd love to connect you with an amazing young mother friend that I'm proud to know … she was pregnant when she was diagnosed and is now stage IV but fighting strong and very knowledgeable! Visit her blog at: http://strongenough-christina.blogspot.com/

                                              Best of luck to you — we will be pulling for you during the coming months.

                                              Lisa

                                              • June 24, 2011 at 2:41 am
                                              bestday
                                              Participant

                                                Michelle,

                                                I am a melanoma survivor and although we each have our individual worries and loved ones to live for, your posting tugged at my heart. I have a positive feeling for you and your unborn child. If you do have to have an early birth, be reassured that NICU's have come a long way over the years — my first born was 29 weeks (28 years ago) — and her two daughters were born at 27 & 28 weeks — all healthy and we are blessed. I'd love to connect you with an amazing young mother friend that I'm proud to know … she was pregnant when she was diagnosed and is now stage IV but fighting strong and very knowledgeable! Visit her blog at: http://strongenough-christina.blogspot.com/

                                                Best of luck to you — we will be pulling for you during the coming months.

                                                Lisa

                                                • June 24, 2011 at 1:48 pm
                                                Ranisa
                                                Participant

                                                  Wow you have a lot going on.  I am also 30 weeks pregnant….but my scare was much earlier in my pregnancy.  I am doing well, and I hope that you will be doing so soon.  You will have some tuff choices to make, and I wish you the best.  I can't wait to follow your story and hear more about your journey.  Best of luck!!!

                                                  • June 24, 2011 at 1:48 pm
                                                  Ranisa
                                                  Participant

                                                    Wow you have a lot going on.  I am also 30 weeks pregnant….but my scare was much earlier in my pregnancy.  I am doing well, and I hope that you will be doing so soon.  You will have some tuff choices to make, and I wish you the best.  I can't wait to follow your story and hear more about your journey.  Best of luck!!!

                                                    • June 26, 2011 at 7:59 pm
                                                    mother-to-be
                                                    Participant

                                                      Thank you all for sharing your thoughts and your stories.  I appreciate it very much.  I met with the tumor board on Friday.  While there was consensus that I should forego additional lymph node removal, there was no consensus on whether to undergo the interferon treatment.  All the doctors agreed that I should see two melanoma specialists in California.  I have an appointment set with one for July 6 and I'm waiting to hear back from the other.  While I left Friday's meeting a bit more optimistic, I'm in limbo as to where my treatment is headed.  Thank you for your support.  Michelle

                                                      • June 26, 2011 at 7:59 pm
                                                      mother-to-be
                                                      Participant

                                                        Thank you all for sharing your thoughts and your stories.  I appreciate it very much.  I met with the tumor board on Friday.  While there was consensus that I should forego additional lymph node removal, there was no consensus on whether to undergo the interferon treatment.  All the doctors agreed that I should see two melanoma specialists in California.  I have an appointment set with one for July 6 and I'm waiting to hear back from the other.  While I left Friday's meeting a bit more optimistic, I'm in limbo as to where my treatment is headed.  Thank you for your support.  Michelle

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