Am I over reacting or under reacting ?

i had the same problem ur having. i had a mole on upper forearm removed along with 1 positive node. i felt just like u when this all began for me.i am now in a trial just like u r where i was chosen to "watch and wait". i saw 4 different oncologist who all said the same thing. i researched stage 3a melanoma and there are not many treatment for it. i have learned that if u r doing monthly body check and seeing ur clinical trial doctors u will know if it rears its head. the drs r here to help us. i know i c my pcp, oncolist, clinical trial drs, and a dermatologist faithfully…..yeah i know it may seem extreme but like u im scared! with my body checks i have my best friend help me so where i cant c she can. in the end u will need to make ur own chose….but just remember that being in a clinical trial u will b watch alot more then if u were not in one! good luck and i wish the best for u!

i had the same problem ur having. i had a mole on upper forearm removed along with 1 positive node. i felt just like u when this all began for me.i am now in a trial just like u r where i was chosen to "watch and wait". i saw 4 different oncologist who all said the same thing. i researched stage 3a melanoma and there are not many treatment for it. i have learned that if u r doing monthly body check and seeing ur clinical trial doctors u will know if it rears its head. the drs r here to help us. i know i c my pcp, oncolist, clinical trial drs, and a dermatologist faithfully…..yeah i know it may seem extreme but like u im scared! with my body checks i have my best friend help me so where i cant c she can. in the end u will need to make ur own chose….but just remember that being in a clinical trial u will b watch alot more then if u were not in one! good luck and i wish the best for u!

i had the same problem ur having. i had a mole on upper forearm removed along with 1 positive node. i felt just like u when this all began for me.i am now in a trial just like u r where i was chosen to "watch and wait". i saw 4 different oncologist who all said the same thing. i researched stage 3a melanoma and there are not many treatment for it. i have learned that if u r doing monthly body check and seeing ur clinical trial doctors u will know if it rears its head. the drs r here to help us. i know i c my pcp, oncolist, clinical trial drs, and a dermatologist faithfully…..yeah i know it may seem extreme but like u im scared! with my body checks i have my best friend help me so where i cant c she can. in the end u will need to make ur own chose….but just remember that being in a clinical trial u will b watch alot more then if u were not in one! good luck and i wish the best for u!

Melissa,

   It would be easier to understand why the melanoma specialist says your case is "low risk" at IIIB if we had the details of your pathology report. How big/deep was it? Did they talk about mitotic rate? If you can provide more details perhaps we could be more reassuring about.

   Please keep in touch!

~Hazel

Melissa,

   It would be easier to understand why the melanoma specialist says your case is "low risk" at IIIB if we had the details of your pathology report. How big/deep was it? Did they talk about mitotic rate? If you can provide more details perhaps we could be more reassuring about.

   Please keep in touch!

~Hazel

Melissa,

   It would be easier to understand why the melanoma specialist says your case is "low risk" at IIIB if we had the details of your pathology report. How big/deep was it? Did they talk about mitotic rate? If you can provide more details perhaps we could be more reassuring about.

   Please keep in touch!

~Hazel

Hi, 

My story was quite similar to yours (although my name is not Melissa). I was just over 30 years old and my primary tumor was on my right upper back (over my shoulder blade). I also had only 1 lymph node positive and the path report was very similar to yours except I had a greater Breslow thickness and a few more mitotic figures in focal areas of the tumor (not evenly spread thoughout, but in pockets here and there). I had the complete lymph node resection of my right axilla area and was staged at IIIa. The axillary resection was painful and it took a long time for me to regain my full range of motion/strength, but I did. I had a good surgeon and did not loose any sensation in my arm or hand and do not have any problems with lymphedema (poor fluid drainage that causes often painful swelling of limbs after lymph node removal). 

I too was told I had a very good chance of being totally fine after the surgeries but was offered the only FDA approved therapy for stage III- Interferon. I decided that even though it may not do anything I would rather try than kick myself later so we went for it. It's doable for sure but not very fun- it really is like having the flu for an entire year. Literally at the end of that year (less than a month before I finished interferon) and roughly a year and a half after initial diagnosis I found a growing mass in/around the scar tissue from my lymph node surgeries. CT and MRI clean, we did surgery thinking it was a lymph node that got left behind. At the same time they fished around for any other lymph tissue that might have been left behind (there wasn't any) and I had more physical therapy, etc to recover my range of motion again. When the path report came back they couldn't tell if it used to be a lymph node or not (if it was the tumor cells had completely taken over) or an "in transit met". Either way it pushed me into a IIIC. Up until this point I had only been working with my local oncologist so he had me do a PET scan (to go along with my other images) and sent me to a specialist (the nearest one is over 3 hours away) to discuss my case and the possibility of a clinical trial. At that appointment the specialist told me he would not have managed my case any differently if I had seen him from the beginning since it appeared when I was a IIIa that things would likely be fine. Even as a IIIc he thought I'd likely be fine. At the time I was going to enroll in a vaccine trial, but did not have the required mutation in my tumor so we went back to watching and waiting.

In November of last year (3 months after the surgery for the new axilla mass, and just under 2 years from initial diagnosis) I found a very small irritated swelling on my lower abdomen. It almost looked like an ingrown hair so it took me a a couple of weeks to get it biopsied, but it came back as Melanoma and that pushed me into stage IV. Then the panic began- how many other mets are there, where are they, what am I going to do now, etc? We decided to go with IL2 since it's got the best long term results of any of the FDA approved drugs, even though there's a low percentage of people who get a response. I appeared to be a responder (with nearly all of my tumors gone and the ones that weren't (including in my lung and spine) shrinking. I finished my last round of IL2 3 weeks ago and within 1 week of being home from the hospital I started finding masses again under my skin. 3 weeks out and I can count 14 new tumors under my skin. I had a CT a week ago and fortunately they're only under my skin right now but I still have 2 small lung masses and a shrinking spinal mass left over from before the IL2. We're now in the process of figureing out what the best next step is- try another FDA approved therapy (also low chance of responding and/or shorter duration of efficacy) or clinical trial. The only trial that's open with the specialist I had been seeing I'm not interested in so my local oncologist has set me up with another specialist at a different hospital (6 hrs away) to get another opinion and discuss trials. 

I know this has been long, and I'm really not trying to scare you (promise), but I thought that you should hear my story since it really started out similar to yours. I also wanted to make the point that it's your life and your body and if you are worried that you might not have gotten the best second opinion, get a third. No doctor worth his/her salt will be offended by this and you should be searching for the place/people where you feel the most confident about getting the best care and advice. You may get a third opinion and find it's exactly the same as the first 2 and that in itself may give you peace of mind. I love both my local and specialist oncologist I've been seeing- I feel they have been very proactive and based on my research (I have a medical background) I feel the approaches have been very much on track with the way I would have handled my case had I been the doctor instead of the patient, but right now they don't have what I need so I'm getting another opinion. There's nothing wrong with that, and they're completely on board with me investigating other options. Don't feel like you have an obligation of loyalty to this specialist- I would explore your options then consider what's best for you. Just because you get another opinion from someone doesn't mean you have to keep going to that person or can't go back to the first specialist. Also, I don't know where you live or what kind of travel comittment going to the Mayo clinic is, but you might be able to "split the difference" as they say if there's another closer specialist center. Mayo's excellent, but so are many other cancer centers if you're concerned about travel/cost, etc. Depending on what I hear in my upcoming appointment at the new center I'm going to I may opt to visit a 3rd specialist (or 4th) depending on what it appears are open for clinical trials for me and what I and my husband feel is the best option (trial or try other approved therapies). Good luck to you!

Hi, 

My story was quite similar to yours (although my name is not Melissa). I was just over 30 years old and my primary tumor was on my right upper back (over my shoulder blade). I also had only 1 lymph node positive and the path report was very similar to yours except I had a greater Breslow thickness and a few more mitotic figures in focal areas of the tumor (not evenly spread thoughout, but in pockets here and there). I had the complete lymph node resection of my right axilla area and was staged at IIIa. The axillary resection was painful and it took a long time for me to regain my full range of motion/strength, but I did. I had a good surgeon and did not loose any sensation in my arm or hand and do not have any problems with lymphedema (poor fluid drainage that causes often painful swelling of limbs after lymph node removal). 

I too was told I had a very good chance of being totally fine after the surgeries but was offered the only FDA approved therapy for stage III- Interferon. I decided that even though it may not do anything I would rather try than kick myself later so we went for it. It's doable for sure but not very fun- it really is like having the flu for an entire year. Literally at the end of that year (less than a month before I finished interferon) and roughly a year and a half after initial diagnosis I found a growing mass in/around the scar tissue from my lymph node surgeries. CT and MRI clean, we did surgery thinking it was a lymph node that got left behind. At the same time they fished around for any other lymph tissue that might have been left behind (there wasn't any) and I had more physical therapy, etc to recover my range of motion again. When the path report came back they couldn't tell if it used to be a lymph node or not (if it was the tumor cells had completely taken over) or an "in transit met". Either way it pushed me into a IIIC. Up until this point I had only been working with my local oncologist so he had me do a PET scan (to go along with my other images) and sent me to a specialist (the nearest one is over 3 hours away) to discuss my case and the possibility of a clinical trial. At that appointment the specialist told me he would not have managed my case any differently if I had seen him from the beginning since it appeared when I was a IIIa that things would likely be fine. Even as a IIIc he thought I'd likely be fine. At the time I was going to enroll in a vaccine trial, but did not have the required mutation in my tumor so we went back to watching and waiting.

In November of last year (3 months after the surgery for the new axilla mass, and just under 2 years from initial diagnosis) I found a very small irritated swelling on my lower abdomen. It almost looked like an ingrown hair so it took me a a couple of weeks to get it biopsied, but it came back as Melanoma and that pushed me into stage IV. Then the panic began- how many other mets are there, where are they, what am I going to do now, etc? We decided to go with IL2 since it's got the best long term results of any of the FDA approved drugs, even though there's a low percentage of people who get a response. I appeared to be a responder (with nearly all of my tumors gone and the ones that weren't (including in my lung and spine) shrinking. I finished my last round of IL2 3 weeks ago and within 1 week of being home from the hospital I started finding masses again under my skin. 3 weeks out and I can count 14 new tumors under my skin. I had a CT a week ago and fortunately they're only under my skin right now but I still have 2 small lung masses and a shrinking spinal mass left over from before the IL2. We're now in the process of figureing out what the best next step is- try another FDA approved therapy (also low chance of responding and/or shorter duration of efficacy) or clinical trial. The only trial that's open with the specialist I had been seeing I'm not interested in so my local oncologist has set me up with another specialist at a different hospital (6 hrs away) to get another opinion and discuss trials. 

I know this has been long, and I'm really not trying to scare you (promise), but I thought that you should hear my story since it really started out similar to yours. I also wanted to make the point that it's your life and your body and if you are worried that you might not have gotten the best second opinion, get a third. No doctor worth his/her salt will be offended by this and you should be searching for the place/people where you feel the most confident about getting the best care and advice. You may get a third opinion and find it's exactly the same as the first 2 and that in itself may give you peace of mind. I love both my local and specialist oncologist I've been seeing- I feel they have been very proactive and based on my research (I have a medical background) I feel the approaches have been very much on track with the way I would have handled my case had I been the doctor instead of the patient, but right now they don't have what I need so I'm getting another opinion. There's nothing wrong with that, and they're completely on board with me investigating other options. Don't feel like you have an obligation of loyalty to this specialist- I would explore your options then consider what's best for you. Just because you get another opinion from someone doesn't mean you have to keep going to that person or can't go back to the first specialist. Also, I don't know where you live or what kind of travel comittment going to the Mayo clinic is, but you might be able to "split the difference" as they say if there's another closer specialist center. Mayo's excellent, but so are many other cancer centers if you're concerned about travel/cost, etc. Depending on what I hear in my upcoming appointment at the new center I'm going to I may opt to visit a 3rd specialist (or 4th) depending on what it appears are open for clinical trials for me and what I and my husband feel is the best option (trial or try other approved therapies). Good luck to you!

Hi, 

My story was quite similar to yours (although my name is not Melissa). I was just over 30 years old and my primary tumor was on my right upper back (over my shoulder blade). I also had only 1 lymph node positive and the path report was very similar to yours except I had a greater Breslow thickness and a few more mitotic figures in focal areas of the tumor (not evenly spread thoughout, but in pockets here and there). I had the complete lymph node resection of my right axilla area and was staged at IIIa. The axillary resection was painful and it took a long time for me to regain my full range of motion/strength, but I did. I had a good surgeon and did not loose any sensation in my arm or hand and do not have any problems with lymphedema (poor fluid drainage that causes often painful swelling of limbs after lymph node removal). 

I too was told I had a very good chance of being totally fine after the surgeries but was offered the only FDA approved therapy for stage III- Interferon. I decided that even though it may not do anything I would rather try than kick myself later so we went for it. It's doable for sure but not very fun- it really is like having the flu for an entire year. Literally at the end of that year (less than a month before I finished interferon) and roughly a year and a half after initial diagnosis I found a growing mass in/around the scar tissue from my lymph node surgeries. CT and MRI clean, we did surgery thinking it was a lymph node that got left behind. At the same time they fished around for any other lymph tissue that might have been left behind (there wasn't any) and I had more physical therapy, etc to recover my range of motion again. When the path report came back they couldn't tell if it used to be a lymph node or not (if it was the tumor cells had completely taken over) or an "in transit met". Either way it pushed me into a IIIC. Up until this point I had only been working with my local oncologist so he had me do a PET scan (to go along with my other images) and sent me to a specialist (the nearest one is over 3 hours away) to discuss my case and the possibility of a clinical trial. At that appointment the specialist told me he would not have managed my case any differently if I had seen him from the beginning since it appeared when I was a IIIa that things would likely be fine. Even as a IIIc he thought I'd likely be fine. At the time I was going to enroll in a vaccine trial, but did not have the required mutation in my tumor so we went back to watching and waiting.

In November of last year (3 months after the surgery for the new axilla mass, and just under 2 years from initial diagnosis) I found a very small irritated swelling on my lower abdomen. It almost looked like an ingrown hair so it took me a a couple of weeks to get it biopsied, but it came back as Melanoma and that pushed me into stage IV. Then the panic began- how many other mets are there, where are they, what am I going to do now, etc? We decided to go with IL2 since it's got the best long term results of any of the FDA approved drugs, even though there's a low percentage of people who get a response. I appeared to be a responder (with nearly all of my tumors gone and the ones that weren't (including in my lung and spine) shrinking. I finished my last round of IL2 3 weeks ago and within 1 week of being home from the hospital I started finding masses again under my skin. 3 weeks out and I can count 14 new tumors under my skin. I had a CT a week ago and fortunately they're only under my skin right now but I still have 2 small lung masses and a shrinking spinal mass left over from before the IL2. We're now in the process of figureing out what the best next step is- try another FDA approved therapy (also low chance of responding and/or shorter duration of efficacy) or clinical trial. The only trial that's open with the specialist I had been seeing I'm not interested in so my local oncologist has set me up with another specialist at a different hospital (6 hrs away) to get another opinion and discuss trials. 

I know this has been long, and I'm really not trying to scare you (promise), but I thought that you should hear my story since it really started out similar to yours. I also wanted to make the point that it's your life and your body and if you are worried that you might not have gotten the best second opinion, get a third. No doctor worth his/her salt will be offended by this and you should be searching for the place/people where you feel the most confident about getting the best care and advice. You may get a third opinion and find it's exactly the same as the first 2 and that in itself may give you peace of mind. I love both my local and specialist oncologist I've been seeing- I feel they have been very proactive and based on my research (I have a medical background) I feel the approaches have been very much on track with the way I would have handled my case had I been the doctor instead of the patient, but right now they don't have what I need so I'm getting another opinion. There's nothing wrong with that, and they're completely on board with me investigating other options. Don't feel like you have an obligation of loyalty to this specialist- I would explore your options then consider what's best for you. Just because you get another opinion from someone doesn't mean you have to keep going to that person or can't go back to the first specialist. Also, I don't know where you live or what kind of travel comittment going to the Mayo clinic is, but you might be able to "split the difference" as they say if there's another closer specialist center. Mayo's excellent, but so are many other cancer centers if you're concerned about travel/cost, etc. Depending on what I hear in my upcoming appointment at the new center I'm going to I may opt to visit a 3rd specialist (or 4th) depending on what it appears are open for clinical trials for me and what I and my husband feel is the best option (trial or try other approved therapies). Good luck to you!