Too soon to stop check ups?

Is she being seen by a melanoma specialist?  I would get her in for an appointment.  Get copies of all her records, scans and test results and keep them.  If you ever need to see another doctor you will have a copy of what was found and what was done.

You don't mention your mothers age.

Is she being seen by a melanoma specialist?  I would get her in for an appointment.  Get copies of all her records, scans and test results and keep them.  If you ever need to see another doctor you will have a copy of what was found and what was done.

You don't mention your mothers age.

Is she being seen by a melanoma specialist?  I would get her in for an appointment.  Get copies of all her records, scans and test results and keep them.  If you ever need to see another doctor you will have a copy of what was found and what was done.

You don't mention your mothers age.

It sounds like your mother had something similiar to me.  I had nodular melanoma removed from my upper right back (near the middle of the back).  It was 4.5mm w/ulceration.  They did perform a sentinel lymph node biopsy and it came back positive for melanoma.  Brain MRI and CT/PET scan was clear at the time.  They removed the rest of my lymph nodes and all were clear.  Stage 3 at the time.  I tried to get in a clinical trial and couldn't.  3 months later I did have nodules show up on my lungs.  VATS procedure confirmed melanoma.  Tried for another clinical trial and coudln't qualify becuase everything went away on their own!  

Decided on watch and wait.  I went 1 year 2 months with clean scans before a met appeared in my small intestine.  The point of this is – I think 9 months is too short of time to stop watching and checking.  Did htey want to move her to a 6 month schedule?   Not to scare you, but melanoma is tricky and having doctors keep a close eye on you is a smart thing to do.  

Best of luck!!  

Erin

It sounds like your mother had something similiar to me.  I had nodular melanoma removed from my upper right back (near the middle of the back).  It was 4.5mm w/ulceration.  They did perform a sentinel lymph node biopsy and it came back positive for melanoma.  Brain MRI and CT/PET scan was clear at the time.  They removed the rest of my lymph nodes and all were clear.  Stage 3 at the time.  I tried to get in a clinical trial and couldn't.  3 months later I did have nodules show up on my lungs.  VATS procedure confirmed melanoma.  Tried for another clinical trial and coudln't qualify becuase everything went away on their own!  

Decided on watch and wait.  I went 1 year 2 months with clean scans before a met appeared in my small intestine.  The point of this is – I think 9 months is too short of time to stop watching and checking.  Did htey want to move her to a 6 month schedule?   Not to scare you, but melanoma is tricky and having doctors keep a close eye on you is a smart thing to do.  

Best of luck!!  

Erin

It sounds like your mother had something similiar to me.  I had nodular melanoma removed from my upper right back (near the middle of the back).  It was 4.5mm w/ulceration.  They did perform a sentinel lymph node biopsy and it came back positive for melanoma.  Brain MRI and CT/PET scan was clear at the time.  They removed the rest of my lymph nodes and all were clear.  Stage 3 at the time.  I tried to get in a clinical trial and couldn't.  3 months later I did have nodules show up on my lungs.  VATS procedure confirmed melanoma.  Tried for another clinical trial and coudln't qualify becuase everything went away on their own!  

Decided on watch and wait.  I went 1 year 2 months with clean scans before a met appeared in my small intestine.  The point of this is – I think 9 months is too short of time to stop watching and checking.  Did htey want to move her to a 6 month schedule?   Not to scare you, but melanoma is tricky and having doctors keep a close eye on you is a smart thing to do.  

Best of luck!!  

Erin

Seems to be to early to stop watching and waiting for one that deep.   I
 would expect that they would do CT's of the Neck through at least the lungs for a yeaar or two. certinly not over 6 months apart.

Seems to be to early to stop watching and waiting for one that deep.   I
 would expect that they would do CT's of the Neck through at least the lungs for a yeaar or two. certinly not over 6 months apart.

Seems to be to early to stop watching and waiting for one that deep.   I
 would expect that they would do CT's of the Neck through at least the lungs for a yeaar or two. certinly not over 6 months apart.

Your mom and I (and Erin) have almost the same history.  I, too, was diagnosed late (10/10) because the primary  on left upper back was nodular and without color at 4.35 mm, mitotic rate 9+, one sentinel node positive, clear PET and CT, so stage IIIa.  I chose watch and wait with scans every 6 months.  The next scans read all clear, but in actuality, there were both an intransit axillary met and a lung met growing, too small to be seen.  Because I found the intransit met, a re-staging PET was done 3 months later instead of 6 months,  and the lung met was found.  That was removed by VATS in November 2012, and I have been NED since, with scans every 3 months. When I get to a year NED, then scans go back to every 6 months.  The scanning schedule was determined by Dr. Jedd Wolchok at Sloan-Kettering – quite the melanoma expert and a wonderful man – I trust him implicitly!  So…I agree with Jerry and Erin – every 6 months at least.  

I'll be thinking of your mom.  Please keep us posted!

Lear

With all due respect, you didn't recieve the standard of care.

1.  A sentinel node biopsy is not too dangerous unless there are other complicating factors, and yes several nodes may light up.  ALL those nodes are removed and examined.  If the patient is otherwise healthy, operating on several nodal basins is not risky at all compared to not diagnosing stage III disease.  Any complications are usually minor.  Sounds to me from what you have said here that they weren't comfortable using the proceedure at all.

2.  With that deep of a lesion she is at high risk for recurrance or metastasis.  9 months follow up is ludicrious!  With my initial stage 2A diagnosis of a 2.06mm superficial spreading mel AND a negative SNB, I had 3 month checks for the first 2 years, then 4 months for year 3, and then every 6 months thereafter.  I had annual bloodwork and a chest x-ray.

8 years later I was diagnosed with stage IV disease!  An x-ray for other reasons was done which diagnosed my lung tumor.  I also had a small tumor in my chest wall muscle diagnosed by a follow-up PET/CT.

After the first 3 years I moved home and didn't follow up with an oncologist.  That mistake almost cost me my life.  In 2010 I underwent VATS lung wedge resection followed by HD-IL2.  I was and still am a complete responder – 3 years out NED.

Please get a second opinion from a melanoma center.  From what you describe as far as lack of diagnosis (she is at risk for being stage III and not knowing it because it was never followed up on).  Microscopic disease doesn't show up on scans or bloodwork.

In light of no SNB and the depth of her tumor, I would very cautiously err on some sort of follow up for at least the next 5 years.  The kinds of scans to be determined based on risk / benefit and the fact she wasn't fully staged.

IMHO

Glad you found this site, you have every reason to question her care and lack of follow up.

With all due respect, you didn't recieve the standard of care.

1.  A sentinel node biopsy is not too dangerous unless there are other complicating factors, and yes several nodes may light up.  ALL those nodes are removed and examined.  If the patient is otherwise healthy, operating on several nodal basins is not risky at all compared to not diagnosing stage III disease.  Any complications are usually minor.  Sounds to me from what you have said here that they weren't comfortable using the proceedure at all.

2.  With that deep of a lesion she is at high risk for recurrance or metastasis.  9 months follow up is ludicrious!  With my initial stage 2A diagnosis of a 2.06mm superficial spreading mel AND a negative SNB, I had 3 month checks for the first 2 years, then 4 months for year 3, and then every 6 months thereafter.  I had annual bloodwork and a chest x-ray.

8 years later I was diagnosed with stage IV disease!  An x-ray for other reasons was done which diagnosed my lung tumor.  I also had a small tumor in my chest wall muscle diagnosed by a follow-up PET/CT.

After the first 3 years I moved home and didn't follow up with an oncologist.  That mistake almost cost me my life.  In 2010 I underwent VATS lung wedge resection followed by HD-IL2.  I was and still am a complete responder – 3 years out NED.

Please get a second opinion from a melanoma center.  From what you describe as far as lack of diagnosis (she is at risk for being stage III and not knowing it because it was never followed up on).  Microscopic disease doesn't show up on scans or bloodwork.

In light of no SNB and the depth of her tumor, I would very cautiously err on some sort of follow up for at least the next 5 years.  The kinds of scans to be determined based on risk / benefit and the fact she wasn't fully staged.

IMHO

Glad you found this site, you have every reason to question her care and lack of follow up.

With all due respect, you didn't recieve the standard of care.

1.  A sentinel node biopsy is not too dangerous unless there are other complicating factors, and yes several nodes may light up.  ALL those nodes are removed and examined.  If the patient is otherwise healthy, operating on several nodal basins is not risky at all compared to not diagnosing stage III disease.  Any complications are usually minor.  Sounds to me from what you have said here that they weren't comfortable using the proceedure at all.

2.  With that deep of a lesion she is at high risk for recurrance or metastasis.  9 months follow up is ludicrious!  With my initial stage 2A diagnosis of a 2.06mm superficial spreading mel AND a negative SNB, I had 3 month checks for the first 2 years, then 4 months for year 3, and then every 6 months thereafter.  I had annual bloodwork and a chest x-ray.

8 years later I was diagnosed with stage IV disease!  An x-ray for other reasons was done which diagnosed my lung tumor.  I also had a small tumor in my chest wall muscle diagnosed by a follow-up PET/CT.

After the first 3 years I moved home and didn't follow up with an oncologist.  That mistake almost cost me my life.  In 2010 I underwent VATS lung wedge resection followed by HD-IL2.  I was and still am a complete responder – 3 years out NED.

Please get a second opinion from a melanoma center.  From what you describe as far as lack of diagnosis (she is at risk for being stage III and not knowing it because it was never followed up on).  Microscopic disease doesn't show up on scans or bloodwork.

In light of no SNB and the depth of her tumor, I would very cautiously err on some sort of follow up for at least the next 5 years.  The kinds of scans to be determined based on risk / benefit and the fact she wasn't fully staged.

IMHO

Glad you found this site, you have every reason to question her care and lack of follow up.

I have to agree with you that this seems quite a bit to soon to stop follow up appts. I would want to be having appts every 3-4 months for a while, and especially with a question about having spots in her liver. It just seems like she should be followed more closely. Is your Dr a mel specialist?

I do not think you are being an overprotective daughter at all!

Tina

I have to agree with you that this seems quite a bit to soon to stop follow up appts. I would want to be having appts every 3-4 months for a while, and especially with a question about having spots in her liver. It just seems like she should be followed more closely. Is your Dr a mel specialist?

I do not think you are being an overprotective daughter at all!

Tina

I have to agree with you that this seems quite a bit to soon to stop follow up appts. I would want to be having appts every 3-4 months for a while, and especially with a question about having spots in her liver. It just seems like she should be followed more closely. Is your Dr a mel specialist?

I do not think you are being an overprotective daughter at all!

Tina

Your mom and I (and Erin) have almost the same history.  I, too, was diagnosed late (10/10) because the primary  on left upper back was nodular and without color at 4.35 mm, mitotic rate 9+, one sentinel node positive, clear PET and CT, so stage IIIa.  I chose watch and wait with scans every 6 months.  The next scans read all clear, but in actuality, there were both an intransit axillary met and a lung met growing, too small to be seen.  Because I found the intransit met, a re-staging PET was done 3 months later instead of 6 months,  and the lung met was found.  That was removed by VATS in November 2012, and I have been NED since, with scans every 3 months. When I get to a year NED, then scans go back to every 6 months.  The scanning schedule was determined by Dr. Jedd Wolchok at Sloan-Kettering – quite the melanoma expert and a wonderful man – I trust him implicitly!  So…I agree with Jerry and Erin – every 6 months at least.  

I'll be thinking of your mom.  Please keep us posted!

Lear

Your mom and I (and Erin) have almost the same history.  I, too, was diagnosed late (10/10) because the primary  on left upper back was nodular and without color at 4.35 mm, mitotic rate 9+, one sentinel node positive, clear PET and CT, so stage IIIa.  I chose watch and wait with scans every 6 months.  The next scans read all clear, but in actuality, there were both an intransit axillary met and a lung met growing, too small to be seen.  Because I found the intransit met, a re-staging PET was done 3 months later instead of 6 months,  and the lung met was found.  That was removed by VATS in November 2012, and I have been NED since, with scans every 3 months. When I get to a year NED, then scans go back to every 6 months.  The scanning schedule was determined by Dr. Jedd Wolchok at Sloan-Kettering – quite the melanoma expert and a wonderful man – I trust him implicitly!  So…I agree with Jerry and Erin – every 6 months at least.  

I'll be thinking of your mom.  Please keep us posted!

Lear