38yo Husband Just Diagnosed with (probably) Stage IV Melanoma… PLEASE HELP

HOLD YOUR HORSES HERE!!!!

Let me ask you a few questions.  Has he just had a biopsy on the skin?  That's the only testing done so far?  If so, he is NOT stage IV and not dying any time soon.  He is most likely CLARK'S LEVEL IV.  This just described the layer of skin the lesion has invaded.  Clark's Level is not the most prognostic factor, however.  To be able to help you more, we'd need the Breslow depth.  This is the depth in millimeters that the lesion has invaded.  This is, to date, the best prognostic indicator for melanoma.  I'd suggest you get a copy of your pathology report.  If you post it here, we can help you figure out the important bits.  But please don't put your husband in a grave yet, it's unlikely he is stage IV.  If you go to my website (linked below in my signature), choose the Newly Diagnosed button.  Scroll to the bottom of the screen and I include a description of Clark's Level versus Stage.  It is often confused in the newly diagnosed since both use Roman numerals.  Take a deep breath….

Best wishes,

Janner

HOLD YOUR HORSES HERE!!!!

Let me ask you a few questions.  Has he just had a biopsy on the skin?  That's the only testing done so far?  If so, he is NOT stage IV and not dying any time soon.  He is most likely CLARK'S LEVEL IV.  This just described the layer of skin the lesion has invaded.  Clark's Level is not the most prognostic factor, however.  To be able to help you more, we'd need the Breslow depth.  This is the depth in millimeters that the lesion has invaded.  This is, to date, the best prognostic indicator for melanoma.  I'd suggest you get a copy of your pathology report.  If you post it here, we can help you figure out the important bits.  But please don't put your husband in a grave yet, it's unlikely he is stage IV.  If you go to my website (linked below in my signature), choose the Newly Diagnosed button.  Scroll to the bottom of the screen and I include a description of Clark's Level versus Stage.  It is often confused in the newly diagnosed since both use Roman numerals.  Take a deep breath….

Best wishes,

Janner

Hi Friend,

First, you need some good information. Don't address "dying" right now, OK? You haven't even seen anybody yet, you really, at this point don't know exactly what you're dealing with. 

For now, you need to make sure, sure, that this surgical onc is a melanoma specialist.  That is vital!   "Surgical Onc" who's one of the best in the area, doesn't clear up for me if they're talking about your geographical area or the area of melanoma.  My guess is "geographical."  If that's the case, ask and make sure it's also melanoma…if not, please get a referral to a melanoma specialist and make sure that all oncs and derms you deal with from this point on are specialists…that will make a crucial difference for your husband!

While writing this I saw Janner has posted. She'll give you great advice! I'll also refer you to the Melanoma Prayer Center I write and administrate on Facebook though you can read it (notes too) and play the music videos without being on Fb, just click link to it after my name.

Get yourself together for now and for your children.

Lord, in Your mercy, calm our friend here and open the doors for her husband that need opening so that he can get the best treatment possible for whatever he is actually dealing with. See them through this time. Amen.

Grace and peace,

Carol

Hi Friend,

First, you need some good information. Don't address "dying" right now, OK? You haven't even seen anybody yet, you really, at this point don't know exactly what you're dealing with. 

For now, you need to make sure, sure, that this surgical onc is a melanoma specialist.  That is vital!   "Surgical Onc" who's one of the best in the area, doesn't clear up for me if they're talking about your geographical area or the area of melanoma.  My guess is "geographical."  If that's the case, ask and make sure it's also melanoma…if not, please get a referral to a melanoma specialist and make sure that all oncs and derms you deal with from this point on are specialists…that will make a crucial difference for your husband!

While writing this I saw Janner has posted. She'll give you great advice! I'll also refer you to the Melanoma Prayer Center I write and administrate on Facebook though you can read it (notes too) and play the music videos without being on Fb, just click link to it after my name.

Get yourself together for now and for your children.

Lord, in Your mercy, calm our friend here and open the doors for her husband that need opening so that he can get the best treatment possible for whatever he is actually dealing with. See them through this time. Amen.

Grace and peace,

Carol

YOU CANNOT DETERMINE STAGE IV FROM A SKIN BIOPSY ALONE.  I can almost garuantee that the derm is saying stage when they really mean Clark level 4.  THEY ARE NOT THE SAME THING.  I am not yelling but bolding so you can rest assured.

I am a veterinarian and was told the same thing so many years ago.  I also freaked and asked how do they know I am a stage IV just from a biopsy?!  They don't.  Period.

The Clark level only tells you the level of invasion into the skin layers, not if it has spread.  Your husband will need to be further staged most likely by having a sentinal node biopsy done.  You can google the proceedure and look it up on the archives here.

I promise you will get past the deer in the headlights stage, albeit longer for your husband.  This is by far the best site for information and support.

Whatever happens, don't let anyone do a wide excision prior to the sentinal node biopsy.  The time waiting will not make that much difference at this point. (other than making you feel better to get any remaining junk outta there).  A few weeks won't make much difference at this point.

Lastly,  get a copy of your pathology report and post it here word for word.  We will make sense of it for you, the info will be accurate.  NOT ALL Dr.s do the right thing when dealing with mel.  You need to make sure your doctor is well versed as this is no basal cell carcinoma…. My derm did a wide excision and did not even mention a sentinal node biopsy which he should have.  Then sent me to a medical onc instead of a surgical one.  This was at a skin cancer derm's office.  Youdda think derms would be well versed in one of the few deadly skin diseases and not botch the job.  This guy should have retiered long ago.  He also did a piss poor skin exam.

Fortunately since that experience (and after the shock wore off), I have become my best advocate and very versed in this disease.  Almost 8 years after my  diagnosis at 2A, I progressed to stage IV.  Because of my years on this site and knowlege I gained, I was invited to my own tumor board discussion, a first ever for my hospital.

I am currently NED (disease free – as we are "never cured") as of July '10.  I am 42 and a single mom of a 3 & 5 y/o.  This disease scares the living $hit out of you.  Again I promise it will get better with time.  It really does.

Sorry you had to join us, glad you found us.

Sending cyber hugs and support from Hawaii,

Kim

YOU CANNOT DETERMINE STAGE IV FROM A SKIN BIOPSY ALONE.  I can almost garuantee that the derm is saying stage when they really mean Clark level 4.  THEY ARE NOT THE SAME THING.  I am not yelling but bolding so you can rest assured.

I am a veterinarian and was told the same thing so many years ago.  I also freaked and asked how do they know I am a stage IV just from a biopsy?!  They don't.  Period.

The Clark level only tells you the level of invasion into the skin layers, not if it has spread.  Your husband will need to be further staged most likely by having a sentinal node biopsy done.  You can google the proceedure and look it up on the archives here.

I promise you will get past the deer in the headlights stage, albeit longer for your husband.  This is by far the best site for information and support.

Whatever happens, don't let anyone do a wide excision prior to the sentinal node biopsy.  The time waiting will not make that much difference at this point. (other than making you feel better to get any remaining junk outta there).  A few weeks won't make much difference at this point.

Lastly,  get a copy of your pathology report and post it here word for word.  We will make sense of it for you, the info will be accurate.  NOT ALL Dr.s do the right thing when dealing with mel.  You need to make sure your doctor is well versed as this is no basal cell carcinoma…. My derm did a wide excision and did not even mention a sentinal node biopsy which he should have.  Then sent me to a medical onc instead of a surgical one.  This was at a skin cancer derm's office.  Youdda think derms would be well versed in one of the few deadly skin diseases and not botch the job.  This guy should have retiered long ago.  He also did a piss poor skin exam.

Fortunately since that experience (and after the shock wore off), I have become my best advocate and very versed in this disease.  Almost 8 years after my  diagnosis at 2A, I progressed to stage IV.  Because of my years on this site and knowlege I gained, I was invited to my own tumor board discussion, a first ever for my hospital.

I am currently NED (disease free – as we are "never cured") as of July '10.  I am 42 and a single mom of a 3 & 5 y/o.  This disease scares the living $hit out of you.  Again I promise it will get better with time.  It really does.

Sorry you had to join us, glad you found us.

Sending cyber hugs and support from Hawaii,

Kim

Oh, yes, take a deep breath, exhale…take another one, exhale.    And, also, quit reading about melanoma and scaring yourself.    Know why I take liberty of saying that?   I did the same thing six years ago—-I heard "IV" (it was Clarks Level IV) and accepted the shovel that (I thought) came with it, certain it was Stage IV.    Oh how I remember those two weeks before I saw the surgeon, the panic, the crying, the unknown that I feared so much, the awful stories I read, the inability to truly comprehend melanoma staging.   I'm so sorry that you are in this position now, young, a young child—I would suggest that you shouldn't involve the older children in this until you have the medical plan in motion.   The word cancer is SO frightening (I dont' have to tell you that).    Once a definite plan is made, appointment, time, procedure, then you will have to formulate the proper words to inform the teenagers because there will be a wait after those for the actual diagnosis and plan.   And don't let those words scare you, because there will be a diagnosis and a plan (which could be as simple as very low staging with monitoring through semi-annual md appts).  

Go to Janner's site, and read, and re-read Newly Diagnosed first.    Know that the pathology report is not that hard to secure from the doctor (I thought it was questioning his work or something).    It is not a big deal to secure it.    Post it here.   people here are not doctors, but, after six years, I know how experienced some are in explaining path reports.   The Breslow depth will determine a lot of what is to come next for your husband.   But the you can step out of the complete panic you are in now.   Really, you can.   He is NOT Stage IV.    There is much ahead medically:    tests, blood work, appointments—that much I think we will all agree is in his future.    One step at a time.  Try to get that path report for your sanity and his. 

Yep, you've come through the doors to a pretty crappy cancer:  melanoma.    But you are in a good place here.    We've all experienced this first-hand.    I am still Stage III after six  years.   There are probably many, and MANY that do not participate on this board (they probably dont' know of it!!), but many that DO and are managing, surviving and who went through the frightening first days that you and your husband are travelling.    Hang in there. you can do this, he will do this, and once the plan is made, you will feel more in control. 

CarolA – Stage III

Amherst, NY  

Oh, yes, take a deep breath, exhale…take another one, exhale.    And, also, quit reading about melanoma and scaring yourself.    Know why I take liberty of saying that?   I did the same thing six years ago—-I heard "IV" (it was Clarks Level IV) and accepted the shovel that (I thought) came with it, certain it was Stage IV.    Oh how I remember those two weeks before I saw the surgeon, the panic, the crying, the unknown that I feared so much, the awful stories I read, the inability to truly comprehend melanoma staging.   I'm so sorry that you are in this position now, young, a young child—I would suggest that you shouldn't involve the older children in this until you have the medical plan in motion.   The word cancer is SO frightening (I dont' have to tell you that).    Once a definite plan is made, appointment, time, procedure, then you will have to formulate the proper words to inform the teenagers because there will be a wait after those for the actual diagnosis and plan.   And don't let those words scare you, because there will be a diagnosis and a plan (which could be as simple as very low staging with monitoring through semi-annual md appts).  

Go to Janner's site, and read, and re-read Newly Diagnosed first.    Know that the pathology report is not that hard to secure from the doctor (I thought it was questioning his work or something).    It is not a big deal to secure it.    Post it here.   people here are not doctors, but, after six years, I know how experienced some are in explaining path reports.   The Breslow depth will determine a lot of what is to come next for your husband.   But the you can step out of the complete panic you are in now.   Really, you can.   He is NOT Stage IV.    There is much ahead medically:    tests, blood work, appointments—that much I think we will all agree is in his future.    One step at a time.  Try to get that path report for your sanity and his. 

Yep, you've come through the doors to a pretty crappy cancer:  melanoma.    But you are in a good place here.    We've all experienced this first-hand.    I am still Stage III after six  years.   There are probably many, and MANY that do not participate on this board (they probably dont' know of it!!), but many that DO and are managing, surviving and who went through the frightening first days that you and your husband are travelling.    Hang in there. you can do this, he will do this, and once the plan is made, you will feel more in control. 

CarolA – Stage III

Amherst, NY  

Slow down, talk to the Dr's, get informed.  There is light out there for us with Melanoma.  Everyday, new therapies are evolving and people are getting through this.  I too was recently diagnosed with Melanoma and freaked out and my wife would tell you I am the hypochondriac in our family as well.  I went through all the testing and mine had spread to my lungs, "oh crap" I thought….then….I started reading posts here and elsewhere of the advances in Melanoma therapies and of all the survivors and their stories.  I joined a cancer support group at my local hospital and everyday I put one foot in front of the other and move on.  I am scheduled for another PET/CT scan next week to see if anything has changed and to use as a baseline for treatment.  We are reviewing the various treatments out there to find the one that will be best for me. 

I will pray for you and your husband for strength, courage and hope as the waiting can bring needless worry. 

"trust in the Lord with your heart and lean not on your own understanding, In all your ways acknowledge him and he shall direct thy path"  Proverbs 3, 5-6

God Bless.

Robert

Slow down, talk to the Dr's, get informed.  There is light out there for us with Melanoma.  Everyday, new therapies are evolving and people are getting through this.  I too was recently diagnosed with Melanoma and freaked out and my wife would tell you I am the hypochondriac in our family as well.  I went through all the testing and mine had spread to my lungs, "oh crap" I thought….then….I started reading posts here and elsewhere of the advances in Melanoma therapies and of all the survivors and their stories.  I joined a cancer support group at my local hospital and everyday I put one foot in front of the other and move on.  I am scheduled for another PET/CT scan next week to see if anything has changed and to use as a baseline for treatment.  We are reviewing the various treatments out there to find the one that will be best for me. 

I will pray for you and your husband for strength, courage and hope as the waiting can bring needless worry. 

"trust in the Lord with your heart and lean not on your own understanding, In all your ways acknowledge him and he shall direct thy path"  Proverbs 3, 5-6

God Bless.

Robert

Thank you so much for posting this – and for all the wonderful responses.  (This entire thread calmed me down and helped me through the night).  We were also told that my husband, age 37, has stage 3 melanoma.  After reading your post and the replies, it made me wonder so I requested the path report. Can anyone please tell me what this means (in layman's terms):

Skin Biopsy, Upper Back
·        Malignant melanoma
·        Thickness – 0.75mm
·        Level of invasion – Level III
·        Ulceration – not identified
·        Mitotic Rate – <1/mm2
·        Pathologic Stage – T1a
·        Note:  Immunoperoxidase stain for Pan melanoma was performed.  The lesion extends to the peripheral and deep margins.  This lesion should be completely removed.

Thanks for the support (and the prayers helped too).  Sorry to be here, but glad that this site is availabe.

Thank you so much for posting this – and for all the wonderful responses.  (This entire thread calmed me down and helped me through the night).  We were also told that my husband, age 37, has stage 3 melanoma.  After reading your post and the replies, it made me wonder so I requested the path report. Can anyone please tell me what this means (in layman's terms):

Skin Biopsy, Upper Back
·        Malignant melanoma
·        Thickness – 0.75mm
·        Level of invasion – Level III
·        Ulceration – not identified
·        Mitotic Rate – <1/mm2
·        Pathologic Stage – T1a
·        Note:  Immunoperoxidase stain for Pan melanoma was performed.  The lesion extends to the peripheral and deep margins.  This lesion should be completely removed.

Thanks for the support (and the prayers helped too).  Sorry to be here, but glad that this site is availabe.