newly diagnosed- extensive regression

I see you are working within the Canadian Medical system.  Waiting weeks (Nov 12) to have anything done is a major mistake.  In the USA. I went to see my Dermatologist, had a biopsy and had my pathology report in 3 working days.  The same day I met with my Dermo and he referred me to a Onc Surgeon. The Onc saw me in 2 days. He told me he needed to cut it out and have a SLND and scheduled the surgery for the following week.  I had the path report in one week and had a positive node so then I had scheduled a CLND in 1.5 weeks because first I had a PET scan. The day after (Thursday) my ONC told me I had a spot on my liver so he set up a MRI of my brain and liver (Had the brain scan on a Sat and liver on Monday). Monday evening my DR called me at home and said I had a tumor on my liver but he did not believe it so Tuesday morning I had an ultra sound. 45 mins after leaving the hospital I was called on my cell and told to come back the next day (Wed) for a Liver Biopsy. I had the path the next day as benign and I had my surgery CLND that Friday.

I started my treatment on Yervoy and Opdivo as soon as I was healed and healthy for the infusions. My path was fast and still took a month or surgeries and then a month to recover before treatment. 

My point is my Dr worked as fast as possible as he knows this is a killer illness and the faster your work to get it cut out and treated the better off you will be.  You need to push for a faster response from your medical team. I am told this is the difference between the Canadian system and the American system. I hope you can get them to work faster.

Tom

I see you are working within the Canadian Medical system.  Waiting weeks (Nov 12) to have anything done is a major mistake.  In the USA. I went to see my Dermatologist, had a biopsy and had my pathology report in 3 working days.  The same day I met with my Dermo and he referred me to a Onc Surgeon. The Onc saw me in 2 days. He told me he needed to cut it out and have a SLND and scheduled the surgery for the following week.  I had the path report in one week and had a positive node so then I had scheduled a CLND in 1.5 weeks because first I had a PET scan. The day after (Thursday) my ONC told me I had a spot on my liver so he set up a MRI of my brain and liver (Had the brain scan on a Sat and liver on Monday). Monday evening my DR called me at home and said I had a tumor on my liver but he did not believe it so Tuesday morning I had an ultra sound. 45 mins after leaving the hospital I was called on my cell and told to come back the next day (Wed) for a Liver Biopsy. I had the path the next day as benign and I had my surgery CLND that Friday.

I started my treatment on Yervoy and Opdivo as soon as I was healed and healthy for the infusions. My path was fast and still took a month or surgeries and then a month to recover before treatment. 

My point is my Dr worked as fast as possible as he knows this is a killer illness and the faster your work to get it cut out and treated the better off you will be.  You need to push for a faster response from your medical team. I am told this is the difference between the Canadian system and the American system. I hope you can get them to work faster.

Tom

I see you are working within the Canadian Medical system.  Waiting weeks (Nov 12) to have anything done is a major mistake.  In the USA. I went to see my Dermatologist, had a biopsy and had my pathology report in 3 working days.  The same day I met with my Dermo and he referred me to a Onc Surgeon. The Onc saw me in 2 days. He told me he needed to cut it out and have a SLND and scheduled the surgery for the following week.  I had the path report in one week and had a positive node so then I had scheduled a CLND in 1.5 weeks because first I had a PET scan. The day after (Thursday) my ONC told me I had a spot on my liver so he set up a MRI of my brain and liver (Had the brain scan on a Sat and liver on Monday). Monday evening my DR called me at home and said I had a tumor on my liver but he did not believe it so Tuesday morning I had an ultra sound. 45 mins after leaving the hospital I was called on my cell and told to come back the next day (Wed) for a Liver Biopsy. I had the path the next day as benign and I had my surgery CLND that Friday.

I started my treatment on Yervoy and Opdivo as soon as I was healed and healthy for the infusions. My path was fast and still took a month or surgeries and then a month to recover before treatment. 

My point is my Dr worked as fast as possible as he knows this is a killer illness and the faster your work to get it cut out and treated the better off you will be.  You need to push for a faster response from your medical team. I am told this is the difference between the Canadian system and the American system. I hope you can get them to work faster.

Tom

Hi Scottr, I don't think it's that unusual for the primary not to do a complete skin exam or check nodes.  At least, that is what happened to me too.  My GYN said, "That looks a bit like melanoma" (understatement of the year, in hindsight), and referred me to a oncologist/surgeon who actually did my biopsy and then scheduled my WLE and SLNBs.  As far as regression, some studies seem to have found it is a good prognostic indicator, some not.  I also had greater than 75% regression on my biopsy, and the surgeon/onc told me he would treat the melanoma as more advanced, with wider margins and SLNBs,  just to be on the safe side.   Basically the regression makes it impossible to know how deep your melanoma may have gotten before you discovered it, as your body fought it back.  So in your case, where a SLNB might not normally be indicated for a thinner melanoma (i.e. Breslow less than 1 mm), you may be offered this because the regression calls that depth in question.  Evidently, the fact that your body has been able to fight it back can be seen as a positive factor over the long-term by some.  Controversial.  After my surgery and SLNB, I was then referred to a dermatologist for a whole body skin check and a PET scan was ordered.  Normally for a thinner melanoma, or melanoma excised with clear lymph nodes, a PET scan would not even be done, but my melanoma was vulvar/mucosal, which is aggressive.  In the future you will need regular whole body skin checks as you would for any depth of melanoma, however thin.

You are right, your pathology report is not bad, your melanoma is on the thin side, and there is really no reason to panic.  As I said, there are mixed opinions on regression, but to me it would indicate a melanoma to be taken more seriously as that is how my own surgeon reacted.  Keep in mind I am not a medical professional.  And lymph nodes can be enlarged for lots of benign reasons, too. 

As far as the speed in which you are seen, that is NOT always a reflection of how fast you SHOULD be seen.  It is a problem with the whole referral system sometimes, here in the US anyway.  SOMETIMES it is because the lesion is thinner, other times it is just because everyone involved in scheduling is not really focused on the details of your case the way you are, and/or the provider is just scheduled out that far.  It does sometimes pay to be the squeaky wheel.  You can never assume that anyone will advocate for you the way you would advocate for yourself.  If it's possible to get in to be seen by another oncologist or dermatologist sooner, it might be worth a phonecall.

Good luck!

Hi Scottr, I don't think it's that unusual for the primary not to do a complete skin exam or check nodes.  At least, that is what happened to me too.  My GYN said, "That looks a bit like melanoma" (understatement of the year, in hindsight), and referred me to a oncologist/surgeon who actually did my biopsy and then scheduled my WLE and SLNBs.  As far as regression, some studies seem to have found it is a good prognostic indicator, some not.  I also had greater than 75% regression on my biopsy, and the surgeon/onc told me he would treat the melanoma as more advanced, with wider margins and SLNBs,  just to be on the safe side.   Basically the regression makes it impossible to know how deep your melanoma may have gotten before you discovered it, as your body fought it back.  So in your case, where a SLNB might not normally be indicated for a thinner melanoma (i.e. Breslow less than 1 mm), you may be offered this because the regression calls that depth in question.  Evidently, the fact that your body has been able to fight it back can be seen as a positive factor over the long-term by some.  Controversial.  After my surgery and SLNB, I was then referred to a dermatologist for a whole body skin check and a PET scan was ordered.  Normally for a thinner melanoma, or melanoma excised with clear lymph nodes, a PET scan would not even be done, but my melanoma was vulvar/mucosal, which is aggressive.  In the future you will need regular whole body skin checks as you would for any depth of melanoma, however thin.

You are right, your pathology report is not bad, your melanoma is on the thin side, and there is really no reason to panic.  As I said, there are mixed opinions on regression, but to me it would indicate a melanoma to be taken more seriously as that is how my own surgeon reacted.  Keep in mind I am not a medical professional.  And lymph nodes can be enlarged for lots of benign reasons, too. 

As far as the speed in which you are seen, that is NOT always a reflection of how fast you SHOULD be seen.  It is a problem with the whole referral system sometimes, here in the US anyway.  SOMETIMES it is because the lesion is thinner, other times it is just because everyone involved in scheduling is not really focused on the details of your case the way you are, and/or the provider is just scheduled out that far.  It does sometimes pay to be the squeaky wheel.  You can never assume that anyone will advocate for you the way you would advocate for yourself.  If it's possible to get in to be seen by another oncologist or dermatologist sooner, it might be worth a phonecall.

Good luck!

Hi Scottr, I don't think it's that unusual for the primary not to do a complete skin exam or check nodes.  At least, that is what happened to me too.  My GYN said, "That looks a bit like melanoma" (understatement of the year, in hindsight), and referred me to a oncologist/surgeon who actually did my biopsy and then scheduled my WLE and SLNBs.  As far as regression, some studies seem to have found it is a good prognostic indicator, some not.  I also had greater than 75% regression on my biopsy, and the surgeon/onc told me he would treat the melanoma as more advanced, with wider margins and SLNBs,  just to be on the safe side.   Basically the regression makes it impossible to know how deep your melanoma may have gotten before you discovered it, as your body fought it back.  So in your case, where a SLNB might not normally be indicated for a thinner melanoma (i.e. Breslow less than 1 mm), you may be offered this because the regression calls that depth in question.  Evidently, the fact that your body has been able to fight it back can be seen as a positive factor over the long-term by some.  Controversial.  After my surgery and SLNB, I was then referred to a dermatologist for a whole body skin check and a PET scan was ordered.  Normally for a thinner melanoma, or melanoma excised with clear lymph nodes, a PET scan would not even be done, but my melanoma was vulvar/mucosal, which is aggressive.  In the future you will need regular whole body skin checks as you would for any depth of melanoma, however thin.

You are right, your pathology report is not bad, your melanoma is on the thin side, and there is really no reason to panic.  As I said, there are mixed opinions on regression, but to me it would indicate a melanoma to be taken more seriously as that is how my own surgeon reacted.  Keep in mind I am not a medical professional.  And lymph nodes can be enlarged for lots of benign reasons, too. 

As far as the speed in which you are seen, that is NOT always a reflection of how fast you SHOULD be seen.  It is a problem with the whole referral system sometimes, here in the US anyway.  SOMETIMES it is because the lesion is thinner, other times it is just because everyone involved in scheduling is not really focused on the details of your case the way you are, and/or the provider is just scheduled out that far.  It does sometimes pay to be the squeaky wheel.  You can never assume that anyone will advocate for you the way you would advocate for yourself.  If it's possible to get in to be seen by another oncologist or dermatologist sooner, it might be worth a phonecall.

Good luck!

You need to fill in the profile page.

Where on your body was the mole removed?  For instance if it was on your leg a lymph node in your neck would not necessarily mean anything to the melanoma.

Some SNB come back negative but that does not mean you are out of the woods because it can travel through the blood and never go to the lymph nodes.

Is you oncologist a melanoma specialist?

A lump in your neck could be caused from a infection somewhere in the ears, nose or throat.

You need to fill in the profile page.

Where on your body was the mole removed?  For instance if it was on your leg a lymph node in your neck would not necessarily mean anything to the melanoma.

Some SNB come back negative but that does not mean you are out of the woods because it can travel through the blood and never go to the lymph nodes.

Is you oncologist a melanoma specialist?

A lump in your neck could be caused from a infection somewhere in the ears, nose or throat.

You need to fill in the profile page.

Where on your body was the mole removed?  For instance if it was on your leg a lymph node in your neck would not necessarily mean anything to the melanoma.

Some SNB come back negative but that does not mean you are out of the woods because it can travel through the blood and never go to the lymph nodes.

Is you oncologist a melanoma specialist?

A lump in your neck could be caused from a infection somewhere in the ears, nose or throat.

Hi Scott

try not to panic. I remember when I was first diagnosed, I did a whole lot of reading and the view on regression being a bad thing seems to have not been borne out by evidence. Take a look at this:

http://www.cancernetwork.com/melanoma/regression-melanoma-not-linked-sentinel-node-positivity

its a shock getting diagnosed, but you have a very thin mealanoma with an excellent prognosis. Get the neck lump checked out, but don't assume the two are linked because that's unlikely.

Hi Scott

try not to panic. I remember when I was first diagnosed, I did a whole lot of reading and the view on regression being a bad thing seems to have not been borne out by evidence. Take a look at this:

http://www.cancernetwork.com/melanoma/regression-melanoma-not-linked-sentinel-node-positivity

its a shock getting diagnosed, but you have a very thin mealanoma with an excellent prognosis. Get the neck lump checked out, but don't assume the two are linked because that's unlikely.

Hi Scott

try not to panic. I remember when I was first diagnosed, I did a whole lot of reading and the view on regression being a bad thing seems to have not been borne out by evidence. Take a look at this:

http://www.cancernetwork.com/melanoma/regression-melanoma-not-linked-sentinel-node-positivity

its a shock getting diagnosed, but you have a very thin mealanoma with an excellent prognosis. Get the neck lump checked out, but don't assume the two are linked because that's unlikely.