The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Stage 1b question on treatment

Forums Ocular Melanoma Community Stage 1b question on treatment

  • Post
    PFritz
    Participant

      I am a 35 year old mother of two boys and this year my world was rocked my on Spring Break when I received the news that I had Melanoma. It has been a whirlwind since April. I had a T1b due to thickness of .55, Clark III, no ulceration, and mitotic 2 on my left shoulder. I had a melanoma in situ on my left ear. I had two wide excisions and now confused on next steps. Also I am a type 1 diabetic on an insulin pump and a huge family history of cancer (brother passed away from lymphoma and my dad had an ocular melanoma).

      After my two wide excisions in May (and multiple other moles removed while under that weren't melanoma just suspicious that dr wanted removed) I've had a few other dermatology follow ups which was just the watch and wait attitude. I'm not that kind of person given history so we are down at MD Anderson right now. Pathology here was completed and they changed me from a mitotic rate of 2 to 3, is this concerning because it freaked me out?! The dr had said it could be because each pathology looks at different slices and also because their pathology is so good at finding outliers.  In my original treatment the dr said no to a Sentinel Node Biopsy due to risk of surgery (was already going to be a 3 hour surgery and being a diabetic for healing) and he didn't see the benefit of it. At MD Anderson the dr said basically he can't do anything for me unless I have the Sentinel Node Biopsy so what are the thoughts on doing this well after the wide excision, with being 1b? Are there pros, cons, thoughts? We are just very confused with some may differing views on treatment and whether this mole or that mole should go in a jar.

      Thanks!

    Viewing 11 reply threads
    • Replies
        btcedarr
        Participant

          I was diagnosed 1b last October. .54mm, no ulceration, mitotic rate of 3. My oncolcogy surgeon recommended the SLNB at the time of the WLE due to my mitotic rate and that it could not be done afterwards. BUT, he said it was my decision for peace of mind. I now do only 3 month checks with my derm and have had one mild to moderate atypical mole removed. 

          btcedarr
          Participant

            I was diagnosed 1b last October. .54mm, no ulceration, mitotic rate of 3. My oncolcogy surgeon recommended the SLNB at the time of the WLE due to my mitotic rate and that it could not be done afterwards. BUT, he said it was my decision for peace of mind. I now do only 3 month checks with my derm and have had one mild to moderate atypical mole removed. 

              PFritz
              Participant

                Did you then have the SLNB done? The surgical oncologist at md Anderson said I could have it done now even thought I've already had the WLE. My WLE was done my a melanoma plastic surgeon at IU health cancer center so today was first time I've seen any type of oncologist.

                btcedarr
                Participant

                  The SLNB was done before the WLE, but during the same surgery. My understanding is if it is done after, the paths are altered and will not be accurate. My surgeon was a melanoma surgeon, part of an oncology office. Not a plastic surgeon. 

                  btcedarr
                  Participant

                    The SLNB was done before the WLE, but during the same surgery. My understanding is if it is done after, the paths are altered and will not be accurate. My surgeon was a melanoma surgeon, part of an oncology office. Not a plastic surgeon. 

                    btcedarr
                    Participant

                      The SLNB was done before the WLE, but during the same surgery. My understanding is if it is done after, the paths are altered and will not be accurate. My surgeon was a melanoma surgeon, part of an oncology office. Not a plastic surgeon. 

                      PFritz
                      Participant

                        Did you then have the SLNB done? The surgical oncologist at md Anderson said I could have it done now even thought I've already had the WLE. My WLE was done my a melanoma plastic surgeon at IU health cancer center so today was first time I've seen any type of oncologist.

                        PFritz
                        Participant

                          Did you then have the SLNB done? The surgical oncologist at md Anderson said I could have it done now even thought I've already had the WLE. My WLE was done my a melanoma plastic surgeon at IU health cancer center so today was first time I've seen any type of oncologist.

                        btcedarr
                        Participant

                          I was diagnosed 1b last October. .54mm, no ulceration, mitotic rate of 3. My oncolcogy surgeon recommended the SLNB at the time of the WLE due to my mitotic rate and that it could not be done afterwards. BUT, he said it was my decision for peace of mind. I now do only 3 month checks with my derm and have had one mild to moderate atypical mole removed. 

                          debwray
                          Participant

                            this is from the uk nice guidelines  and sets out pros and cons.

                            Doing it after the removal makes it harder to determine the sentinel node accurately- but you should get the picture – also some of the drug trials make this a requirement…

                            Deb

                            Completion lymphadenectomy

                            See implementation: getting started for information about putting recommendation 1.7.1 into practice.

                            1.7.1Consider completion lymphadenectomy for people whose sentinel lymph node biopsy shows micro‑metastases and give them detailed verbal and written information about the possible advantages and disadvantages, using the table below.

                            Possible advantages of completion lymphadenectomy

                            Possible disadvantages of completion lymphadenectomy

                            Removing the rest of the lymph nodes before cancer develops in them reduces the chance of the cancer returning in the same part of the body.

                            Lymphoedema (long‑term swelling) may develop, and is most likely if the operation is in the groin and least likely in the head and neck.

                            The operation is less complicated and safer than waiting until cancer develops in the remaining lymph nodes and then removing them.

                            In 4 out of 5 people, cancer will not develop in the remaining lymph nodes, so there is a chance that the operation will have been done unnecessarily.

                            People who have had the operation may be able to take part in clinical trials of new treatments to prevent future melanoma. These trials often cannot accept people who have not had this operation.

                            There is no evidence that people who have this operation live longer than people who do not have it.

                             

                            Having any operation can cause complications.

                            Lymph node dissection

                            1.7.2Offer therapeutic lymph node dissection to people with palpable stage IIIB–IIIC melanoma or nodal disease detected by imaging.

                            Adjuvant radiotherapy

                            1.7.3Do not offer adjuvant radiotherapy to people with stage IIIA melanoma.

                            1.7.4Do not offer adjuvant radiotherapy to people with stage IIIB or IIIC melanoma unless a reduction in the risk of local recurrence is estimated to outweigh the risk of significant adverse effects.

                            https://www.nice.org.uk/guidance/ng14/chapter/1-Recommendations#managing-stages-0ii-melanoma

                             

                            debwray
                            Participant

                              this is from the uk nice guidelines  and sets out pros and cons.

                              Doing it after the removal makes it harder to determine the sentinel node accurately- but you should get the picture – also some of the drug trials make this a requirement…

                              Deb

                              Completion lymphadenectomy

                              See implementation: getting started for information about putting recommendation 1.7.1 into practice.

                              1.7.1Consider completion lymphadenectomy for people whose sentinel lymph node biopsy shows micro‑metastases and give them detailed verbal and written information about the possible advantages and disadvantages, using the table below.

                              Possible advantages of completion lymphadenectomy

                              Possible disadvantages of completion lymphadenectomy

                              Removing the rest of the lymph nodes before cancer develops in them reduces the chance of the cancer returning in the same part of the body.

                              Lymphoedema (long‑term swelling) may develop, and is most likely if the operation is in the groin and least likely in the head and neck.

                              The operation is less complicated and safer than waiting until cancer develops in the remaining lymph nodes and then removing them.

                              In 4 out of 5 people, cancer will not develop in the remaining lymph nodes, so there is a chance that the operation will have been done unnecessarily.

                              People who have had the operation may be able to take part in clinical trials of new treatments to prevent future melanoma. These trials often cannot accept people who have not had this operation.

                              There is no evidence that people who have this operation live longer than people who do not have it.

                               

                              Having any operation can cause complications.

                              Lymph node dissection

                              1.7.2Offer therapeutic lymph node dissection to people with palpable stage IIIB–IIIC melanoma or nodal disease detected by imaging.

                              Adjuvant radiotherapy

                              1.7.3Do not offer adjuvant radiotherapy to people with stage IIIA melanoma.

                              1.7.4Do not offer adjuvant radiotherapy to people with stage IIIB or IIIC melanoma unless a reduction in the risk of local recurrence is estimated to outweigh the risk of significant adverse effects.

                              https://www.nice.org.uk/guidance/ng14/chapter/1-Recommendations#managing-stages-0ii-melanoma

                               

                              debwray
                              Participant

                                this is from the uk nice guidelines  and sets out pros and cons.

                                Doing it after the removal makes it harder to determine the sentinel node accurately- but you should get the picture – also some of the drug trials make this a requirement…

                                Deb

                                Completion lymphadenectomy

                                See implementation: getting started for information about putting recommendation 1.7.1 into practice.

                                1.7.1Consider completion lymphadenectomy for people whose sentinel lymph node biopsy shows micro‑metastases and give them detailed verbal and written information about the possible advantages and disadvantages, using the table below.

                                Possible advantages of completion lymphadenectomy

                                Possible disadvantages of completion lymphadenectomy

                                Removing the rest of the lymph nodes before cancer develops in them reduces the chance of the cancer returning in the same part of the body.

                                Lymphoedema (long‑term swelling) may develop, and is most likely if the operation is in the groin and least likely in the head and neck.

                                The operation is less complicated and safer than waiting until cancer develops in the remaining lymph nodes and then removing them.

                                In 4 out of 5 people, cancer will not develop in the remaining lymph nodes, so there is a chance that the operation will have been done unnecessarily.

                                People who have had the operation may be able to take part in clinical trials of new treatments to prevent future melanoma. These trials often cannot accept people who have not had this operation.

                                There is no evidence that people who have this operation live longer than people who do not have it.

                                 

                                Having any operation can cause complications.

                                Lymph node dissection

                                1.7.2Offer therapeutic lymph node dissection to people with palpable stage IIIB–IIIC melanoma or nodal disease detected by imaging.

                                Adjuvant radiotherapy

                                1.7.3Do not offer adjuvant radiotherapy to people with stage IIIA melanoma.

                                1.7.4Do not offer adjuvant radiotherapy to people with stage IIIB or IIIC melanoma unless a reduction in the risk of local recurrence is estimated to outweigh the risk of significant adverse effects.

                                https://www.nice.org.uk/guidance/ng14/chapter/1-Recommendations#managing-stages-0ii-melanoma

                                 

                                anp21
                                Participant

                                  I'm not sure if this will be helpful or not but our situations are similar. I am 31, and was just diagnosed with melanoma in July that  was .59mm, mitotic rate 1, Clarks level III. I was seen by a surgical oncologist and a regular oncologist. My surgeon only recommended WLE, the oncologist recommended SLNB. After much research and a discussion with my surgeon, I decided to skip the SLNB at this point. He told me I could do it at a later date if I wanted but he really felt like it was more than actually necessary. I had a PET scan done and it came back negative so that makes me feel better, but I truly feel like I made the right decision. At this point, for me, less is best. Also, if my node biopsy would've came back positive, they would've suggested removing all of the nodes and my surgeon felt very STRONGLY that removal of all nodes would not be a good idea. I hope this helps you. Take care. 

                                  anp21
                                  Participant

                                    I'm not sure if this will be helpful or not but our situations are similar. I am 31, and was just diagnosed with melanoma in July that  was .59mm, mitotic rate 1, Clarks level III. I was seen by a surgical oncologist and a regular oncologist. My surgeon only recommended WLE, the oncologist recommended SLNB. After much research and a discussion with my surgeon, I decided to skip the SLNB at this point. He told me I could do it at a later date if I wanted but he really felt like it was more than actually necessary. I had a PET scan done and it came back negative so that makes me feel better, but I truly feel like I made the right decision. At this point, for me, less is best. Also, if my node biopsy would've came back positive, they would've suggested removing all of the nodes and my surgeon felt very STRONGLY that removal of all nodes would not be a good idea. I hope this helps you. Take care. 

                                    anp21
                                    Participant

                                      I'm not sure if this will be helpful or not but our situations are similar. I am 31, and was just diagnosed with melanoma in July that  was .59mm, mitotic rate 1, Clarks level III. I was seen by a surgical oncologist and a regular oncologist. My surgeon only recommended WLE, the oncologist recommended SLNB. After much research and a discussion with my surgeon, I decided to skip the SLNB at this point. He told me I could do it at a later date if I wanted but he really felt like it was more than actually necessary. I had a PET scan done and it came back negative so that makes me feel better, but I truly feel like I made the right decision. At this point, for me, less is best. Also, if my node biopsy would've came back positive, they would've suggested removing all of the nodes and my surgeon felt very STRONGLY that removal of all nodes would not be a good idea. I hope this helps you. Take care. 

                                      Chendo82
                                      Participant

                                        I was diagnosed stage 1b in the beginning of July. My mole was .46mm, Clarks level 3, no ulceration and a mitotic rate of 1. My oncologist just recommended the Wle but when I seen the plastic surgeon he basically said he wasn't giving me a choice on the snlb. He said it would give me and him peace. He didn't feel right just sending me off. I just had it done a week ago. The most painful thing was when they injected the dye. I got my results today and they were clear. I don't regret that he made me do it even though it was clear and I didn't need it. Now I can relax and not have to worry about the what-ifs. 

                                        Chendo82
                                        Participant

                                          I was diagnosed stage 1b in the beginning of July. My mole was .46mm, Clarks level 3, no ulceration and a mitotic rate of 1. My oncologist just recommended the Wle but when I seen the plastic surgeon he basically said he wasn't giving me a choice on the snlb. He said it would give me and him peace. He didn't feel right just sending me off. I just had it done a week ago. The most painful thing was when they injected the dye. I got my results today and they were clear. I don't regret that he made me do it even though it was clear and I didn't need it. Now I can relax and not have to worry about the what-ifs. 

                                          Chendo82
                                          Participant

                                            I was diagnosed stage 1b in the beginning of July. My mole was .46mm, Clarks level 3, no ulceration and a mitotic rate of 1. My oncologist just recommended the Wle but when I seen the plastic surgeon he basically said he wasn't giving me a choice on the snlb. He said it would give me and him peace. He didn't feel right just sending me off. I just had it done a week ago. The most painful thing was when they injected the dye. I got my results today and they were clear. I don't regret that he made me do it even though it was clear and I didn't need it. Now I can relax and not have to worry about the what-ifs. 

                                        Viewing 11 reply threads
                                        • You must be logged in to reply to this topic.
                                        About the MRF Patient Forum

                                        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.

                                        The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                        Popular Topics