Need advice for Stage IIA follow up

I too am stage IIA. I think my Dr.plans to keep me on annual xray and bloodwork forever. I could be wrong since I'm only in year 6. I've heard 10 years is the magic number. I also think follow-up for each stage is highly controversial. I've seen and heard quite a wide range of follow-up. After 5 years, my Dr. said I only had a 2%-3% chance of having a recurrence. So it is true, you are likely to never see it again. If it were me, I'd probably really push for the annual xray and bloodwork. I don't think your Dr. is necessarily wrong. I've seen higher stages do no follow-up after 10 years. But I plan to do annual forever. jmho. Best of luck to you.

I too am stage IIA. I think my Dr.plans to keep me on annual xray and bloodwork forever. I could be wrong since I'm only in year 6. I've heard 10 years is the magic number. I also think follow-up for each stage is highly controversial. I've seen and heard quite a wide range of follow-up. After 5 years, my Dr. said I only had a 2%-3% chance of having a recurrence. So it is true, you are likely to never see it again. If it were me, I'd probably really push for the annual xray and bloodwork. I don't think your Dr. is necessarily wrong. I've seen higher stages do no follow-up after 10 years. But I plan to do annual forever. jmho. Best of luck to you.

Hey I was a stage 1B and just spoke to an Oncology nurse that has been doing this for years…( I am an RN, but didn't know anything about Oncology until this June  : (   ….)

Anyway, when I told her my story and asked if i should be followed at all, She was 100% sure I should be for the rest of my life. She said that there are many cases that show up decades later… not what i wanted to hear, but an annual follow up to be sure sounds like a good plan….

congrats to you tho!

Hey I was a stage 1B and just spoke to an Oncology nurse that has been doing this for years…( I am an RN, but didn't know anything about Oncology until this June  : (   ….)

Anyway, when I told her my story and asked if i should be followed at all, She was 100% sure I should be for the rest of my life. She said that there are many cases that show up decades later… not what i wanted to hear, but an annual follow up to be sure sounds like a good plan….

congrats to you tho!

Jenner! How nice to see you. I can't really speak to your question.You may remember I was stage I for 20 yrs before I advanced to stage III. I never had an oncologist back then, and no one would have even suggested it.

I was the one who found my own recurrence and my derm ignored my concerns for a full year before doing a biopsy.

I think if you have a good working relationship with your derm, and s/he listens to your concerns and would immediately refer you if something came up, then you sould be fine!

Of course you can never really let down your guard, but maybe you will find ways through your primary care doctor to have periodic chest Xrays for cause (like, doc I have this wheezy cough and it worries me with my history) and include appropriate blood work.

Of course it IS highly  unlikely it will ever come back at this point, but I am a perfect example of the exception to the rules. However..I don't believe that having an onc all those years would have changed things much.

Besides the occasional test, what else has your oncologist done for you lately..over all these NED years. I try to see mine less and less <g>

Great to see you here and doing so well! congratulations.

dian in spokane

Jenner! How nice to see you. I can't really speak to your question.You may remember I was stage I for 20 yrs before I advanced to stage III. I never had an oncologist back then, and no one would have even suggested it.

I was the one who found my own recurrence and my derm ignored my concerns for a full year before doing a biopsy.

I think if you have a good working relationship with your derm, and s/he listens to your concerns and would immediately refer you if something came up, then you sould be fine!

Of course you can never really let down your guard, but maybe you will find ways through your primary care doctor to have periodic chest Xrays for cause (like, doc I have this wheezy cough and it worries me with my history) and include appropriate blood work.

Of course it IS highly  unlikely it will ever come back at this point, but I am a perfect example of the exception to the rules. However..I don't believe that having an onc all those years would have changed things much.

Besides the occasional test, what else has your oncologist done for you lately..over all these NED years. I try to see mine less and less <g>

Great to see you here and doing so well! congratulations.

dian in spokane

Hi Jennifer – I too went from Stage 1 to stage 3 at it happened at exactly the 10 year mark.  Lucky Me!!!  Which I would have bought a lottery ticket.  I too did not have an oncologist and was only doing check backs with the dermatologist.  You could have knocked me over with a feather when I was told the golf ball size lump under my arm was Melanoma.  The radiologist told me he was sure that's what it was before the biopsy results came back.  I had convinced myself he was wrong by the time I finally got them 5 days later.  But sigh he was wrong.

I think vigilance is probably the best advice.  Hopefully this is it for you and you will never have to deal with this crap again.

Tracy

Stage 3

Hi Jennifer – I too went from Stage 1 to stage 3 at it happened at exactly the 10 year mark.  Lucky Me!!!  Which I would have bought a lottery ticket.  I too did not have an oncologist and was only doing check backs with the dermatologist.  You could have knocked me over with a feather when I was told the golf ball size lump under my arm was Melanoma.  The radiologist told me he was sure that's what it was before the biopsy results came back.  I had convinced myself he was wrong by the time I finally got them 5 days later.  But sigh he was wrong.

I think vigilance is probably the best advice.  Hopefully this is it for you and you will never have to deal with this crap again.

Tracy

Stage 3

Hi Jennifer – I too went from Stage 1 to stage 3 at it happened at exactly the 10 year mark.  Lucky Me!!!  Which I would have bought a lottery ticket.  I too did not have an oncologist and was only doing check backs with the dermatologist.  You could have knocked me over with a feather when I was told the golf ball size lump under my arm was Melanoma.  The radiologist told me he was sure that's what it was before the biopsy results came back.  I had convinced myself he was wrong by the time I finally got them 5 days later.  But sigh he was wrong.

I think vigilance is probably the best advice.  Hopefully this is it for you and you will never have to deal with this crap again.

Tracy

Stage 3

Hi Jennifer – I too went from Stage 1 to stage 3 at it happened at exactly the 10 year mark.  Lucky Me!!!  Which I would have bought a lottery ticket.  I too did not have an oncologist and was only doing check backs with the dermatologist.  You could have knocked me over with a feather when I was told the golf ball size lump under my arm was Melanoma.  The radiologist told me he was sure that's what it was before the biopsy results came back.  I had convinced myself he was wrong by the time I finally got them 5 days later.  But sigh he was wrong.

I think vigilance is probably the best advice.  Hopefully this is it for you and you will never have to deal with this crap again.

Tracy

Stage 3

Now there is a question for which we'd all like an answer!  What IS the proper follow-up once we've finally attained NED?  No two oncologists or melanoma/cancer centers have the same answer!  Some do PET scans, some do CT & MRI; and they all seem to have different standards as to which parts of the body are included in their scans. 

Not even the federal government (who always seem to have an answer to every question) has an answer to this one.  Who is a patient supposed to believe is right?  We can only hope that someday, someone will finally do a clinical study and provide us a definitive answer.  And here's hoping when they finally do, the results will be something we can live with and they won't be anything like the revised mammogram guidelines they published a couple of years ago that not even the ACS endorsed!

Anyway, melanoma is an evil, heartless, capricious bitch of a disease.  You'll find plenty of examples on this board of people who went 10 and even 20 years between their initial stage I or II diagnosis and their eventual stage III or IV recurrence.  Personally, I don't think you can ever fully relax your vigilance. 

I was initially diagnosed in 1992 (probably stage II).  At that time, follow-up instructions were "watch for suspicious moles".  Since part of my surgeon's treatment had included him "shaving" off every mole on my body he could find (30+), it was probably 10 years before I had any moles worth watching! 

My stage III recurrence was 17 years later in 2009.   No mole was involved – it went straight to a single lymph node under my right arm.  (The melanoma diagnosis came as a massive surprise, as the breast doctor and I were both expecting either breast cancer or possibly lymphoma. Wisely, she had included my previous melanoma history on the pathology lab slip.)

Follow-up this time is quite a bit different.  Because oncologist considers me at high risk for a recurrence, his schedule is quite aggressive (his words).  His follow-up clock didn't actually start until after I completed my interferon, 14 months after I became surgically NED.  Year 1:  PET scan every 3 months.  Years 2-3:  PET scans every 4 months.  Years 4-5: PET scan every 6 months.  I have an agreement with my dermatologist that my skin exams follow the same schedule.

After the first 5 years, he switches to annual scans.  For melanoma at least, he appears to follow-up for life.  For me personally, given my personal experience and the capricious nature of melanoma, I'm OK with that.

Personally, I don't think you can ever fully relax your vigilance.  Melanoma returns with a vengeance whenever it damn well pleases, when you least expect it.  The best you can do is keep a weather eye out.  In the end, I think the answer is:  What are your expectations, what is your comfort level, and what level of risk are you willing to assume?

That's my 2cents, for what they're worth – and with today's economy, that ain't much!

Now there is a question for which we'd all like an answer!  What IS the proper follow-up once we've finally attained NED?  No two oncologists or melanoma/cancer centers have the same answer!  Some do PET scans, some do CT & MRI; and they all seem to have different standards as to which parts of the body are included in their scans. 

Not even the federal government (who always seem to have an answer to every question) has an answer to this one.  Who is a patient supposed to believe is right?  We can only hope that someday, someone will finally do a clinical study and provide us a definitive answer.  And here's hoping when they finally do, the results will be something we can live with and they won't be anything like the revised mammogram guidelines they published a couple of years ago that not even the ACS endorsed!

Anyway, melanoma is an evil, heartless, capricious bitch of a disease.  You'll find plenty of examples on this board of people who went 10 and even 20 years between their initial stage I or II diagnosis and their eventual stage III or IV recurrence.  Personally, I don't think you can ever fully relax your vigilance. 

I was initially diagnosed in 1992 (probably stage II).  At that time, follow-up instructions were "watch for suspicious moles".  Since part of my surgeon's treatment had included him "shaving" off every mole on my body he could find (30+), it was probably 10 years before I had any moles worth watching! 

My stage III recurrence was 17 years later in 2009.   No mole was involved – it went straight to a single lymph node under my right arm.  (The melanoma diagnosis came as a massive surprise, as the breast doctor and I were both expecting either breast cancer or possibly lymphoma. Wisely, she had included my previous melanoma history on the pathology lab slip.)

Follow-up this time is quite a bit different.  Because oncologist considers me at high risk for a recurrence, his schedule is quite aggressive (his words).  His follow-up clock didn't actually start until after I completed my interferon, 14 months after I became surgically NED.  Year 1:  PET scan every 3 months.  Years 2-3:  PET scans every 4 months.  Years 4-5: PET scan every 6 months.  I have an agreement with my dermatologist that my skin exams follow the same schedule.

After the first 5 years, he switches to annual scans.  For melanoma at least, he appears to follow-up for life.  For me personally, given my personal experience and the capricious nature of melanoma, I'm OK with that.

Personally, I don't think you can ever fully relax your vigilance.  Melanoma returns with a vengeance whenever it damn well pleases, when you least expect it.  The best you can do is keep a weather eye out.  In the end, I think the answer is:  What are your expectations, what is your comfort level, and what level of risk are you willing to assume?

That's my 2cents, for what they're worth – and with today's economy, that ain't much!