Malignant Melanoma in Ear canal

Hi,

Sorry you joined the club. I haven't heard of anyone with melanoma in the ear canal and can't offer anything in that respect, but can in others…

I hope you are seeing a melanoma specialist. If not, please get seek a second opinion. They may say the same thing, but they also may not. In any event you have a different perspective, learn more and be able to make a better decision.

You haven't said much, but I am assuming that you've had a brain MRI and discussed immunotherapies too. My Mom had gamma knife radiation and I am assuming this is what you are talking about radiation.  If so, talk to your doctor about adding a second treatment. There is something called the abscopal effect that can really help your immune system fight the cancer.

Good luck!

Hi,

Sorry you joined the club. I haven't heard of anyone with melanoma in the ear canal and can't offer anything in that respect, but can in others…

I hope you are seeing a melanoma specialist. If not, please get seek a second opinion. They may say the same thing, but they also may not. In any event you have a different perspective, learn more and be able to make a better decision.

You haven't said much, but I am assuming that you've had a brain MRI and discussed immunotherapies too. My Mom had gamma knife radiation and I am assuming this is what you are talking about radiation.  If so, talk to your doctor about adding a second treatment. There is something called the abscopal effect that can really help your immune system fight the cancer.

Good luck!

Hi,

Sorry you joined the club. I haven't heard of anyone with melanoma in the ear canal and can't offer anything in that respect, but can in others…

I hope you are seeing a melanoma specialist. If not, please get seek a second opinion. They may say the same thing, but they also may not. In any event you have a different perspective, learn more and be able to make a better decision.

You haven't said much, but I am assuming that you've had a brain MRI and discussed immunotherapies too. My Mom had gamma knife radiation and I am assuming this is what you are talking about radiation.  If so, talk to your doctor about adding a second treatment. There is something called the abscopal effect that can really help your immune system fight the cancer.

Good luck!

What an odd presentation – another sneaky way for melanoma to creep in. I can't think of anyone on the boards with this particular presentaiton of melanoma. Were you given a Breslow depth for the melanoma? Depth is really important and can govern future decisions like scans, node biopsies or immunotherapies. If you don't have it, you really need to get it. Was any bone removed during your surgery?  I would have thought you'd need fairly radical surgery. TBH, I don't mean to scare you, but I think a melanoma in such a hidden location so close to very important structures is pretty serious stuff.  Honestly, you really need a melanoma specialist centre. I think this is really, really important in your case.  It's such a rare occurrence that only a real specialist centre would have ever encountered it. From the few things I've read, you have a much higher risk of one day being confronted with systemic disease – that is, melanoma metastised to places like the lung – than your typical patient with a thin melanoma of the skin. It's got to be one of the more dangerous presentations because of proximity to very important things. Please, seek out expert help as soon as you can – melanoma specialist level,not normal oncologists or ear/nose/throat docs.

What an odd presentation – another sneaky way for melanoma to creep in. I can't think of anyone on the boards with this particular presentaiton of melanoma. Were you given a Breslow depth for the melanoma? Depth is really important and can govern future decisions like scans, node biopsies or immunotherapies. If you don't have it, you really need to get it. Was any bone removed during your surgery?  I would have thought you'd need fairly radical surgery. TBH, I don't mean to scare you, but I think a melanoma in such a hidden location so close to very important structures is pretty serious stuff.  Honestly, you really need a melanoma specialist centre. I think this is really, really important in your case.  It's such a rare occurrence that only a real specialist centre would have ever encountered it. From the few things I've read, you have a much higher risk of one day being confronted with systemic disease – that is, melanoma metastised to places like the lung – than your typical patient with a thin melanoma of the skin. It's got to be one of the more dangerous presentations because of proximity to very important things. Please, seek out expert help as soon as you can – melanoma specialist level,not normal oncologists or ear/nose/throat docs.

What an odd presentation – another sneaky way for melanoma to creep in. I can't think of anyone on the boards with this particular presentaiton of melanoma. Were you given a Breslow depth for the melanoma? Depth is really important and can govern future decisions like scans, node biopsies or immunotherapies. If you don't have it, you really need to get it. Was any bone removed during your surgery?  I would have thought you'd need fairly radical surgery. TBH, I don't mean to scare you, but I think a melanoma in such a hidden location so close to very important structures is pretty serious stuff.  Honestly, you really need a melanoma specialist centre. I think this is really, really important in your case.  It's such a rare occurrence that only a real specialist centre would have ever encountered it. From the few things I've read, you have a much higher risk of one day being confronted with systemic disease – that is, melanoma metastised to places like the lung – than your typical patient with a thin melanoma of the skin. It's got to be one of the more dangerous presentations because of proximity to very important things. Please, seek out expert help as soon as you can – melanoma specialist level,not normal oncologists or ear/nose/throat docs.

Get copies of all you pathology reports and scan information and keep in a folder just for the melanoma.  If you ever seek a second opinion then you have copies and won't have to wait to get it or if you move you have your copies.

If you have other questions sometimes we can help more by the information on the pathology report.

A melanoma specialist is more up to date on everything melanoma rather than just a general oncologist.

Get copies of all you pathology reports and scan information and keep in a folder just for the melanoma.  If you ever seek a second opinion then you have copies and won't have to wait to get it or if you move you have your copies.

If you have other questions sometimes we can help more by the information on the pathology report.

A melanoma specialist is more up to date on everything melanoma rather than just a general oncologist.

Get copies of all you pathology reports and scan information and keep in a folder just for the melanoma.  If you ever seek a second opinion then you have copies and won't have to wait to get it or if you move you have your copies.

If you have other questions sometimes we can help more by the information on the pathology report.

A melanoma specialist is more up to date on everything melanoma rather than just a general oncologist.

Wow.. Does sound like a really unusual presentation but not unheard of.

Radiation quickly followed by immunotherapy might be the way to go as the radiation seems to increase the ability of the immunotherapy drugs to seek and destroy cells we all want to be rid of.

And yes…with this I would certainly try and find a specialist melanoma team as the others have already said as your presentation is so unusual that the experience and expertise you need is likely to be found there. There are others on the boards who have primaries on the face nose etc

Have you had scans or slnb done ? Getting the staging right makes out easier for you to get the right treatment at the right time. 

Good luck with your treatment …..

Deb

Wow.. Does sound like a really unusual presentation but not unheard of.

Radiation quickly followed by immunotherapy might be the way to go as the radiation seems to increase the ability of the immunotherapy drugs to seek and destroy cells we all want to be rid of.

And yes…with this I would certainly try and find a specialist melanoma team as the others have already said as your presentation is so unusual that the experience and expertise you need is likely to be found there. There are others on the boards who have primaries on the face nose etc

Have you had scans or slnb done ? Getting the staging right makes out easier for you to get the right treatment at the right time. 

Good luck with your treatment …..

Deb

Wow.. Does sound like a really unusual presentation but not unheard of.

Radiation quickly followed by immunotherapy might be the way to go as the radiation seems to increase the ability of the immunotherapy drugs to seek and destroy cells we all want to be rid of.

And yes…with this I would certainly try and find a specialist melanoma team as the others have already said as your presentation is so unusual that the experience and expertise you need is likely to be found there. There are others on the boards who have primaries on the face nose etc

Have you had scans or slnb done ? Getting the staging right makes out easier for you to get the right treatment at the right time. 

Good luck with your treatment …..

Deb

Hi,

If you don't have a specialist and need to find one or you want a second opinion post your location here and ask for recommendations. – It can be very helpful.

I would also like to recommend that when you are looking for a radiation oncologist that you find someone with years and years of experience and who had plenty of surgeries under their belt. When my Mom was diagnosed with brain mets we went to the doctor we were referred to. That was a mistake for us. He missed a brain met and even though other radiologist noted a brain met he still thought it was a blood vessel and told us it wasn't a brain met. My Mom ended up with a second opinion a few months later and we found out about that brain met and that she had 16 new mets. Very scary and it highly doubt that anything like this would have ever happened with her new radiation oncologist and neuro-oncologist. They are just to experienced and thorough.

BTW

Make sure your team of doctors work together and communicate. It is very important and make sure you know who you need to see when. Sometimes people get lost to follow up because they are under the impression that once the first treatment is done that that's all they need…

Highly recommend USC Norris Comprehensive Cancer Center, Los Angeles:

Dr. Eric Chang, Radiation Oncologist

Dr. James Hu, Oncologist

Hi,

If you don't have a specialist and need to find one or you want a second opinion post your location here and ask for recommendations. – It can be very helpful.

I would also like to recommend that when you are looking for a radiation oncologist that you find someone with years and years of experience and who had plenty of surgeries under their belt. When my Mom was diagnosed with brain mets we went to the doctor we were referred to. That was a mistake for us. He missed a brain met and even though other radiologist noted a brain met he still thought it was a blood vessel and told us it wasn't a brain met. My Mom ended up with a second opinion a few months later and we found out about that brain met and that she had 16 new mets. Very scary and it highly doubt that anything like this would have ever happened with her new radiation oncologist and neuro-oncologist. They are just to experienced and thorough.

BTW

Make sure your team of doctors work together and communicate. It is very important and make sure you know who you need to see when. Sometimes people get lost to follow up because they are under the impression that once the first treatment is done that that's all they need…

Highly recommend USC Norris Comprehensive Cancer Center, Los Angeles:

Dr. Eric Chang, Radiation Oncologist

Dr. James Hu, Oncologist

Hi,

If you don't have a specialist and need to find one or you want a second opinion post your location here and ask for recommendations. – It can be very helpful.

I would also like to recommend that when you are looking for a radiation oncologist that you find someone with years and years of experience and who had plenty of surgeries under their belt. When my Mom was diagnosed with brain mets we went to the doctor we were referred to. That was a mistake for us. He missed a brain met and even though other radiologist noted a brain met he still thought it was a blood vessel and told us it wasn't a brain met. My Mom ended up with a second opinion a few months later and we found out about that brain met and that she had 16 new mets. Very scary and it highly doubt that anything like this would have ever happened with her new radiation oncologist and neuro-oncologist. They are just to experienced and thorough.

BTW

Make sure your team of doctors work together and communicate. It is very important and make sure you know who you need to see when. Sometimes people get lost to follow up because they are under the impression that once the first treatment is done that that's all they need…

Highly recommend USC Norris Comprehensive Cancer Center, Los Angeles:

Dr. Eric Chang, Radiation Oncologist

Dr. James Hu, Oncologist

Although I have nothing meaningful to add, this situation is a reminder of my recent visit to my specialist.  In discussing my issues, which include a very unusual location for a large tumor, he reminded me that melanoma is a complete, and total wild-card.  He thinks nothing is surprising anymore, when battling this elusive beast.  The discovery of mel hits us all hard, but there are well-established steps, especially in the beginning to establish stage and severity, that leads to next steps in treatment.  The good news is there more treatments available now than ever before and many with very good response rates.  Best to you in the battle.

Gary

Although I have nothing meaningful to add, this situation is a reminder of my recent visit to my specialist.  In discussing my issues, which include a very unusual location for a large tumor, he reminded me that melanoma is a complete, and total wild-card.  He thinks nothing is surprising anymore, when battling this elusive beast.  The discovery of mel hits us all hard, but there are well-established steps, especially in the beginning to establish stage and severity, that leads to next steps in treatment.  The good news is there more treatments available now than ever before and many with very good response rates.  Best to you in the battle.

Gary

Although I have nothing meaningful to add, this situation is a reminder of my recent visit to my specialist.  In discussing my issues, which include a very unusual location for a large tumor, he reminded me that melanoma is a complete, and total wild-card.  He thinks nothing is surprising anymore, when battling this elusive beast.  The discovery of mel hits us all hard, but there are well-established steps, especially in the beginning to establish stage and severity, that leads to next steps in treatment.  The good news is there more treatments available now than ever before and many with very good response rates.  Best to you in the battle.

Gary