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  • Post
    JoshF
    Participant

      HI All-

      So my surgical oncologist from Northwestern Memorial Hosp called me this morning with results of CT Scan on chest that was ordered due to hyper metabolic activity in mid lobe of right lung found on PET scan. He cancelled surgery as wants a biopsy of nodule in lung which measured 9mm. He said he would be remiss to do surgery as I would immeadiately start some type of systemic treatment if biopsy comes back positive for mel. I got impression that's what he is thinking. He said you could have some type of infection which made PET light up and so on. That being said I've had numerous CT Scans which show nothing with the latest being from March. So in 6 months something grew to 9mm in my lung. I did smoke for 20+ years but I'm a realist. I'd put money on this being MM and gladly lose it if biopsy comes back neg.

      SO my confusion here is I always thought surgery was best way to treat melanoma then followed with treatment. Something I'm missing? Maybe I should stop trying to understand this awful disease… Thanks for listening and to the many that have replied…I feel like this is best place to go for information and advice…

       

      Josh

    Viewing 17 reply threads
    • Replies
        Rebecca and Bob
        Participant

          Hey Josh,

          This sucks (the not knowing). I hope it is an infection. We have had our turn with things turning out to be melanoma or not to be melanoma.  I will give you an example though of not knowing and something ending up being nothing because you have to have hope. Our most recent visit. Pet lit up on my husband's back, he is stage IV so when something lights up then we and the doctors immediately believe it's melanoma. Then we were sent for a closer look with an MRI of his lumbar. They found that it was inflammation so that was great.

          Another example, a long time ago after he did IL-2 and surgery on his lung to remove a necrotic tumor after treatment. The scans showed something suspicious in his lung, it ended up being something to do with an infection after a cold he had recently gotten over. 

          Anyway, I told my husband this time around when there was the unknown that we shouldn't worry until we have all the information because we can't do anything yet. Of course that is easy to say when it's not you. I'm sorry you are going through this because we know how it feels but try to just know your next steps just in case but also try to be positive.

          Hug those kids! Our kids are the same age so I know your main goal is to be there for them. Hang in there and we are praying for you for the best outcome. They have a lot more treatments now then we started down this road 7 years ago.

          Rebecca

          Rebecca and Bob
          Participant

            Hey Josh,

            This sucks (the not knowing). I hope it is an infection. We have had our turn with things turning out to be melanoma or not to be melanoma.  I will give you an example though of not knowing and something ending up being nothing because you have to have hope. Our most recent visit. Pet lit up on my husband's back, he is stage IV so when something lights up then we and the doctors immediately believe it's melanoma. Then we were sent for a closer look with an MRI of his lumbar. They found that it was inflammation so that was great.

            Another example, a long time ago after he did IL-2 and surgery on his lung to remove a necrotic tumor after treatment. The scans showed something suspicious in his lung, it ended up being something to do with an infection after a cold he had recently gotten over. 

            Anyway, I told my husband this time around when there was the unknown that we shouldn't worry until we have all the information because we can't do anything yet. Of course that is easy to say when it's not you. I'm sorry you are going through this because we know how it feels but try to just know your next steps just in case but also try to be positive.

            Hug those kids! Our kids are the same age so I know your main goal is to be there for them. Hang in there and we are praying for you for the best outcome. They have a lot more treatments now then we started down this road 7 years ago.

            Rebecca

              Rebecca and Bob
              Participant

                I wanted to answer your question about surgery. When my husband went from Stage III to IV they found two lung nodules. They immediately put him in for IL-2. It made one tumor disappear and the other sat there for a year. They finally removed it with surgery as stated above it was dead. We thought why not surgery when we found the two originally, but surgery wasn't and option for us. There was also the thought from our doctor that if one is showing up, more will follow and you want to knock it out with a systematic treatment before that happens. Hoping you don't have to deal with any of it.

                Rebecca

                doro
                Participant

                  My dad's oncologist also gave this explanation for why he might not recommend surgery for metastatic growths when he first started treating my dad (who has not had a metastatis at this point and was just asking a "what if" question).

                  Basically, if there is a metastatic growth, it means the cancer is already moving around the body. Systemic treatment will attack all of the existing cancer cells in the body and can help prevent additional metastases, while surgery will only get at the main growth. Yes, you could possibly do surgery and then start systemic treatment but the surgery and recovery will likely delay the start of systemic treatment. The oncologist also pointed out that metastatic growths can serve as measurement markers to determine if a treatment is effective (e.g., the growth shrinks or does not grow). However, he also said that if the metastatic growth is painful or causing harm (besides simply being there) that surgery may be possible/recommended.

                  Best of luck, keep us posted!

                  doro
                  Participant

                    My dad's oncologist also gave this explanation for why he might not recommend surgery for metastatic growths when he first started treating my dad (who has not had a metastatis at this point and was just asking a "what if" question).

                    Basically, if there is a metastatic growth, it means the cancer is already moving around the body. Systemic treatment will attack all of the existing cancer cells in the body and can help prevent additional metastases, while surgery will only get at the main growth. Yes, you could possibly do surgery and then start systemic treatment but the surgery and recovery will likely delay the start of systemic treatment. The oncologist also pointed out that metastatic growths can serve as measurement markers to determine if a treatment is effective (e.g., the growth shrinks or does not grow). However, he also said that if the metastatic growth is painful or causing harm (besides simply being there) that surgery may be possible/recommended.

                    Best of luck, keep us posted!

                    doro
                    Participant

                      My dad's oncologist also gave this explanation for why he might not recommend surgery for metastatic growths when he first started treating my dad (who has not had a metastatis at this point and was just asking a "what if" question).

                      Basically, if there is a metastatic growth, it means the cancer is already moving around the body. Systemic treatment will attack all of the existing cancer cells in the body and can help prevent additional metastases, while surgery will only get at the main growth. Yes, you could possibly do surgery and then start systemic treatment but the surgery and recovery will likely delay the start of systemic treatment. The oncologist also pointed out that metastatic growths can serve as measurement markers to determine if a treatment is effective (e.g., the growth shrinks or does not grow). However, he also said that if the metastatic growth is painful or causing harm (besides simply being there) that surgery may be possible/recommended.

                      Best of luck, keep us posted!

                      Rebecca and Bob
                      Participant

                        I wanted to answer your question about surgery. When my husband went from Stage III to IV they found two lung nodules. They immediately put him in for IL-2. It made one tumor disappear and the other sat there for a year. They finally removed it with surgery as stated above it was dead. We thought why not surgery when we found the two originally, but surgery wasn't and option for us. There was also the thought from our doctor that if one is showing up, more will follow and you want to knock it out with a systematic treatment before that happens. Hoping you don't have to deal with any of it.

                        Rebecca

                        Rebecca and Bob
                        Participant

                          I wanted to answer your question about surgery. When my husband went from Stage III to IV they found two lung nodules. They immediately put him in for IL-2. It made one tumor disappear and the other sat there for a year. They finally removed it with surgery as stated above it was dead. We thought why not surgery when we found the two originally, but surgery wasn't and option for us. There was also the thought from our doctor that if one is showing up, more will follow and you want to knock it out with a systematic treatment before that happens. Hoping you don't have to deal with any of it.

                          Rebecca

                        Rebecca and Bob
                        Participant

                          Hey Josh,

                          This sucks (the not knowing). I hope it is an infection. We have had our turn with things turning out to be melanoma or not to be melanoma.  I will give you an example though of not knowing and something ending up being nothing because you have to have hope. Our most recent visit. Pet lit up on my husband's back, he is stage IV so when something lights up then we and the doctors immediately believe it's melanoma. Then we were sent for a closer look with an MRI of his lumbar. They found that it was inflammation so that was great.

                          Another example, a long time ago after he did IL-2 and surgery on his lung to remove a necrotic tumor after treatment. The scans showed something suspicious in his lung, it ended up being something to do with an infection after a cold he had recently gotten over. 

                          Anyway, I told my husband this time around when there was the unknown that we shouldn't worry until we have all the information because we can't do anything yet. Of course that is easy to say when it's not you. I'm sorry you are going through this because we know how it feels but try to just know your next steps just in case but also try to be positive.

                          Hug those kids! Our kids are the same age so I know your main goal is to be there for them. Hang in there and we are praying for you for the best outcome. They have a lot more treatments now then we started down this road 7 years ago.

                          Rebecca

                          POW
                          Participant

                            Hi, Josh-

                            Once again, as always, it's the waiting and the not knowing that is the hardest! I'm sorry you have to go through this. 

                            As for biopsy vs surgery, I have read about some people here having VATS surgery to remove one lobe of the lung and then being NED. However, first you have to know what the lesion is– melanoma, lung cancer, old scar tissue, or whatever. Each of these would require a different surgical approach or perhaps, as your doctor said, systemic treatment rather than surgery. Actually, I am surprised that they even scheduled surgery without doing a biopsy first. So while I understand your confusion, frustration and impatience, I think a biopsy is the smartest route to go. 

                            POW
                            Participant

                              Hi, Josh-

                              Once again, as always, it's the waiting and the not knowing that is the hardest! I'm sorry you have to go through this. 

                              As for biopsy vs surgery, I have read about some people here having VATS surgery to remove one lobe of the lung and then being NED. However, first you have to know what the lesion is– melanoma, lung cancer, old scar tissue, or whatever. Each of these would require a different surgical approach or perhaps, as your doctor said, systemic treatment rather than surgery. Actually, I am surprised that they even scheduled surgery without doing a biopsy first. So while I understand your confusion, frustration and impatience, I think a biopsy is the smartest route to go. 

                              POW
                              Participant

                                Hi, Josh-

                                Once again, as always, it's the waiting and the not knowing that is the hardest! I'm sorry you have to go through this. 

                                As for biopsy vs surgery, I have read about some people here having VATS surgery to remove one lobe of the lung and then being NED. However, first you have to know what the lesion is– melanoma, lung cancer, old scar tissue, or whatever. Each of these would require a different surgical approach or perhaps, as your doctor said, systemic treatment rather than surgery. Actually, I am surprised that they even scheduled surgery without doing a biopsy first. So while I understand your confusion, frustration and impatience, I think a biopsy is the smartest route to go. 

                                MaryD
                                Participant

                                  Hi Josh,

                                  There seem to be different schools of thoughts but when I had a 8mm lung nodule found during a routine Pet/CT,  my doctors and I all agreed we wanted it out.   Apparently it was so small in the previous scan that they didn't remark on it in the report.   However, in the next scan, it was noted that it had grown from 3mm to 8mm.   I had the option of doing a biopsy first but decided to just get the surgery done as it seemed pretty clear in my case, it was probably mel.

                                  I had VATs surgery (video assisted thoracic surgery) to remove it and was out of the hospital in 2 days.  This was in 2007 and I subsequently enrolled in an Ipilumimab trial for resected melanoma.

                                  My strategy over the years was to get tumors out and then follow up with some kind of adjuvant treatment.  Of course if there is a larger number of tumors involved, this sometimes precludes surgery and you have to rely on systemic treatment.

                                  You may want to seek a second opinion on this issue so that you can weigh your options and make an informed decision from there.    No easy answers unfortunately – just decisions that feel right to you.

                                  Hope this helps,

                                  Mary

                                   

                                  MaryD
                                  Participant

                                    Hi Josh,

                                    There seem to be different schools of thoughts but when I had a 8mm lung nodule found during a routine Pet/CT,  my doctors and I all agreed we wanted it out.   Apparently it was so small in the previous scan that they didn't remark on it in the report.   However, in the next scan, it was noted that it had grown from 3mm to 8mm.   I had the option of doing a biopsy first but decided to just get the surgery done as it seemed pretty clear in my case, it was probably mel.

                                    I had VATs surgery (video assisted thoracic surgery) to remove it and was out of the hospital in 2 days.  This was in 2007 and I subsequently enrolled in an Ipilumimab trial for resected melanoma.

                                    My strategy over the years was to get tumors out and then follow up with some kind of adjuvant treatment.  Of course if there is a larger number of tumors involved, this sometimes precludes surgery and you have to rely on systemic treatment.

                                    You may want to seek a second opinion on this issue so that you can weigh your options and make an informed decision from there.    No easy answers unfortunately – just decisions that feel right to you.

                                    Hope this helps,

                                    Mary

                                     

                                    MaryD
                                    Participant

                                      Hi Josh,

                                      There seem to be different schools of thoughts but when I had a 8mm lung nodule found during a routine Pet/CT,  my doctors and I all agreed we wanted it out.   Apparently it was so small in the previous scan that they didn't remark on it in the report.   However, in the next scan, it was noted that it had grown from 3mm to 8mm.   I had the option of doing a biopsy first but decided to just get the surgery done as it seemed pretty clear in my case, it was probably mel.

                                      I had VATs surgery (video assisted thoracic surgery) to remove it and was out of the hospital in 2 days.  This was in 2007 and I subsequently enrolled in an Ipilumimab trial for resected melanoma.

                                      My strategy over the years was to get tumors out and then follow up with some kind of adjuvant treatment.  Of course if there is a larger number of tumors involved, this sometimes precludes surgery and you have to rely on systemic treatment.

                                      You may want to seek a second opinion on this issue so that you can weigh your options and make an informed decision from there.    No easy answers unfortunately – just decisions that feel right to you.

                                      Hope this helps,

                                      Mary

                                       

                                      MattF
                                      Participant

                                        Hey Josh

                                        I'm 6 days out of my surgery.

                                        I can tell you the one thing they told me before the surgery…..they will do a PETCT and if they find any other active sites in chest abdomen or head beyond the hot lump which was already biopsied in my neck then they would cancel the surgery.

                                        I didnt understand at first then he explained it….if Melanoma has travaled to lungs or liver etc then there is no reason to try and take out lymph nodes in the neck to stop the spread….so if it had already spread then cutting out lump and nodes would be pointless.

                                         

                                        Hope that makes sense.

                                        Hope you are doing well.

                                         

                                        I have a few weeks of healing…nice scar from my temple down and around to my chin.

                                        I will be on soft food for a while and will meet with radiation onc and mel onc later in Oct.

                                        Kepp us posted.

                                        MattF
                                        Participant

                                          Hey Josh

                                          I'm 6 days out of my surgery.

                                          I can tell you the one thing they told me before the surgery…..they will do a PETCT and if they find any other active sites in chest abdomen or head beyond the hot lump which was already biopsied in my neck then they would cancel the surgery.

                                          I didnt understand at first then he explained it….if Melanoma has travaled to lungs or liver etc then there is no reason to try and take out lymph nodes in the neck to stop the spread….so if it had already spread then cutting out lump and nodes would be pointless.

                                           

                                          Hope that makes sense.

                                          Hope you are doing well.

                                           

                                          I have a few weeks of healing…nice scar from my temple down and around to my chin.

                                          I will be on soft food for a while and will meet with radiation onc and mel onc later in Oct.

                                          Kepp us posted.

                                          MattF
                                          Participant

                                            Hey Josh

                                            I'm 6 days out of my surgery.

                                            I can tell you the one thing they told me before the surgery…..they will do a PETCT and if they find any other active sites in chest abdomen or head beyond the hot lump which was already biopsied in my neck then they would cancel the surgery.

                                            I didnt understand at first then he explained it….if Melanoma has travaled to lungs or liver etc then there is no reason to try and take out lymph nodes in the neck to stop the spread….so if it had already spread then cutting out lump and nodes would be pointless.

                                             

                                            Hope that makes sense.

                                            Hope you are doing well.

                                             

                                            I have a few weeks of healing…nice scar from my temple down and around to my chin.

                                            I will be on soft food for a while and will meet with radiation onc and mel onc later in Oct.

                                            Kepp us posted.

                                            sharon0803
                                            Participant

                                              Hi Josh,

                                               

                                              I have been following your post.  I noticed we have the same Dr., Jon Richards.  I followed your post because it was similar to my situation.  

                                               

                                              Any updates?

                                              sharon0803
                                              Participant

                                                Hi Josh,

                                                 

                                                I have been following your post.  I noticed we have the same Dr., Jon Richards.  I followed your post because it was similar to my situation.  

                                                 

                                                Any updates?

                                                sharon0803
                                                Participant

                                                  Hi Josh,

                                                   

                                                  I have been following your post.  I noticed we have the same Dr., Jon Richards.  I followed your post because it was similar to my situation.  

                                                   

                                                  Any updates?

                                                  JerryfromFauq
                                                  Participant

                                                    If the doctor believes that there may be only one nodule, then surgery is a great way to go.  If  the doctor believes there is most likely additional small tumors, then systemic treatment is more likely to stop the growths and spread.  Many times surgeons will schedule an operation as a precaution, so that they have access to the OR, if they decide the operation should be done, they won't have to wait.  I like that they would set it up to move fast, and then have the possibility of not operationg rather than deciding it is needed, but delay due to the OR not being available.

                                                       Waiting with you for the Biopsy report!

                                                    JerryfromFauq
                                                    Participant

                                                      If the doctor believes that there may be only one nodule, then surgery is a great way to go.  If  the doctor believes there is most likely additional small tumors, then systemic treatment is more likely to stop the growths and spread.  Many times surgeons will schedule an operation as a precaution, so that they have access to the OR, if they decide the operation should be done, they won't have to wait.  I like that they would set it up to move fast, and then have the possibility of not operationg rather than deciding it is needed, but delay due to the OR not being available.

                                                         Waiting with you for the Biopsy report!

                                                      JerryfromFauq
                                                      Participant

                                                        If the doctor believes that there may be only one nodule, then surgery is a great way to go.  If  the doctor believes there is most likely additional small tumors, then systemic treatment is more likely to stop the growths and spread.  Many times surgeons will schedule an operation as a precaution, so that they have access to the OR, if they decide the operation should be done, they won't have to wait.  I like that they would set it up to move fast, and then have the possibility of not operationg rather than deciding it is needed, but delay due to the OR not being available.

                                                           Waiting with you for the Biopsy report!

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