New here...age 25 with Clarks Level 4 Melanoma

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7/27/2011 12:55am
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Can anyone tell me if there is a stage that goes along with clarks level? or how i find it out.

I was diagnosed with melanoma on my upper left shoulder blade in April of 2011.  I had had it removed by my PCP two weeks before. when the results came back I was told the margins were clear and that i just needed to see a dermatologist every 6 months from here on out. But now I'm seeing surgeons for more biopsies and to have MORE skin taken from around my original incision. WHY THE HECK DO I NEED MORE TAKEN IF THE MARGINS ARE CLEAR?

They told me today when I had my consult with the surgeon that not only do i need more skin taken from the original site but that i have to have my lymph nodes biopsied in my neck and/or armpit. Hmmmmmm. That sounds like a total joy!....NOT!

They also told me that my spot was .99mm thick boarderline for hardcore treatment. so they are playing it safe since I'm so young and going the more hardcore route.

The Dr. says I grow Melanoma. It doesn't just start as a mole like most people.....and just grow a spot of melanoma. How awesome! I'm a petree (sp?) dish for this crap! WTH?!?!

Any input would be great! THX!

Kim

Morenci, AZ

Anonymous - (7/27/2011 - 1:11am)

Kim,

Standard protocal is to take a wide excision. 1mm requires a sentinal node biopsy. This is to be sure that it hasn't passed on to your lymph node.  You didn't say if you had any miotic rate or ulceration. This is needed for proper staging. 

Why has it taken since April for them to recommend the  wide excision?  I don't understand the Doctors comment of you grow melanoma. There are some people on this board that don't have a known primary but that isn't your case. 

 

I wish i could understand enough of what i have been told to explain better.

But this is what the lab results say. maybe you can make sence of it....

 

Diagnosis: Malignant melanoma, nodular type, Clark's level IV, Thickness 0.99mm, epithelioid cell type.

 

Ulceration: Absent

Vertical growth phase: Present

Radial Growth phase: present

Mitotic rate: 2/sq mm

Lymphatic space invasion: Absent

Neurotropism: absent

Regression: not identified

Lymphotic host response: Present, brisk

Margins: the deep and lateral margins are clear. tumor is approx 1mmfrom the nearest lateral margin.

 

Dr. Comments: Features consistant with malignant melanoma include the following:

Diffuse cytologic atypia

mitotic activity within the bottom portion of the lesion

thin rather than hyperplastic epidermis without well formed Kamino bodies

Brisk lymphocytic host response at the base of the tumor

immunohistochemical positivity for HMB45 at all levels of the tumor

Elevated Ki67 proliferative index at all levels of the tumor.

 

 

Hi Kim,

I too had nodular melanoma.  It's a more agressive type tumor that invades into our bodies deeper than most melanomas.  I think the reason your getting more skin removed is because the original incision didn't have enough margins.  Even though it says the deep and lateral margins were clear, it says the tumor is approx 1mm from the nearest lateral margin.  It's standard to acheive 2cm all around the tumor.  So I'm assuming that there wasn't enough of a clear margin.   My tumor was 14mm breslow depth, clarks level V, and ulcerated.  They're being very careful with me as well.  Cells could have passed through your blood or lymphatic vessels.  Plus this didn't originate from a mole.  It's better to stay proactive and agressive!! 

I just have mine removed the first of June so I'm only going by what I've learned so far. :)

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

Just a quick note - only 1 cm margins are taken for a lesion less than 2mm deep.  Lesions over 2mm use 2cm margins as the standard.

Oh Ok, I was just going by what my doc told me, he said it was 2cm before he knew my depth!  But it must have been obvious mine was deep.  Anyway thanks for the info.  I've learned more about Melanoma than I ever care to!  :)  

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

they said that i "grow" it bc it didnt start out as a mole.....just aspot of melanoma.... does thast make sense?

You have nodular melanoma which can grow anywhere on the skin very quickly.

Steve

Kim, I'm Stage IIA and had my primary tumor on the bottom of my left foot's 2nd toe, adjacent to the Great Toe.  They had to amputate that toe and they also did a Sentinel Node Biopsy (SNB), which is what your Surgical Doc is saying to you too...

And they are right......

Unfortunately, melanoma -- like most if not all other cancers -- can manifest sub-microscopic cells which defy the ability of current medical technolgy to detect.  They will cut out more tissue -- in a procedure called a Wide Local Excision (WLE) -- to improve the odds of removing any residual, sub-microscopic disease -- and the potential for something called Melanoma Field Cells which researchers conducting melanoma investigational studies have discovered.....

At .99 mm Breslow depth, you meet the standard protocol for a Sentinel Node Biopsy (the standard protocol is 1.00 mm for melanomas which are not ulcerated and .75mm for melanomas which are ulcerated).... The fact that the biopsy performed by your PCP states "clean margins" is, quite frankly, irrelevant to the medical problem at hand....

Some National Cancer Institute Centers of Excellence will perform an SNB for lesions .75mm and NOT ulcerated.... You may want to ask your Doc or check your pathology report for your mitotic rate ... If it is greater than 0, then it is a slam dunk that you need an SNB -- the Docs would probably be opening themselves up for a medical malpractice suit if they didn't perform one and you later relapse and have a recurrence....

I know that women, particularly young women, are concerned about the potential for visible cosmetic scarring moreso than most men (particularly middle age dudes like me)....... I don't want to scare you since I know from first hand experience what it is like to be "newly diagnosed" .... but you HAVE to bear in mind that melanoma is the biggest cancer killer of women in the 20 - 29 year old age cohort ....

This is serious business and the #1 medical priority and consideration -- before all other considerations - has to be putting YOU in the best possible medical posture after curative surgery ......

As for your stage, they can't determine it based on Clarke's Level alone which really went out the windown with the advent of the 2009 American Joint Cancer Committee (AJCC) Staging Guide for Melanoma, which is the worldwide standard .... They use Breslow Depth (.99mm), the status of the regional lymph node basin (hence the SNB) and the presence or absence of distant metastasis (which is unlikely in your case).... Mitotic rate -- the rate of malignant melanoma cellular division -- is also a factor for differentiating Stage IA and Stage IB disease.....

Assuming that the SNB finds that your regional lymph node basin is clear of any melanoma cells, and depending on what your mitotic rate is, you will most likely be either Stage IA or Stage IB.... which are good places to sit if one has to have melanoma ......

Hang in there, Aloha

Hawaii Bob

Stage IIA, NED 3 years on 21 August 2011 ...... but waiting on the results of yet another punch biopsy of a lesion on my left leg (probably not an in-transit met -- KNOCK ON WOOD -- but couldn't assume it away).

Mitotic rate: 2/sq mm is that a good rate or bad one?

Bob, not worried about the scar AT ALL. just don't understand anything about this stuff. Don't know anyone that has ever had it and it doesnt run in my family. soooooo im kinda going at this blindly.

Kim, I STRONGLY recommend that you download and read this Melanoma Patient Guide from the National Comprehensive Cancer Network.... It is a very easy read and will explain everything you need to know about your melanoma in non-technical terms which we patients can readily understand ...... It was published in 2010 and is up to date ...

It will walk you through everything ...... I wish to hell I had this when I was newly diagnosed in 2008

 

Aloha, Bob

 

PDF File at the link ....

http://www.nccn.com/images/patient-guidelines/pdf/melanoma.pdf 

 

Kim,

Don't worry about Clarks Level. That is no longer used for staging melanoma. Your .99mm depth should put you at Stage 1, which has a good prognosis. I'm confused about whether they have done the WLE yet and if not, why not.

The way your case is being handled sounds unusual. Yes, why do they need to take more skin if the margins were clear? That's a good question for your doctor. Please ask him. Don't let yourself be led along blindly. Melanoma is VERY dangerous. You shouldn't have to go on the Internet to get such basic questions about your case answered. Take charge of your situation. Demand answers and accountability from your doctors.

Best Regards, Steve

  

Steve,

 They have not done the WLE yet. not sure when they plan to do it either.

OK, I read your pathology report and I think I understand better what has happened so far. Sounds like they did an excision biopsy and the excision removed the entire tumor with clear (but narrow) margins all around the sample. 

BUT... why has so much time been allowed to pass with still no WLE being performed?You want them to do a WLE. You NEED them to do a WLE. The Sentinel Node Biopsy is necessary, too. Your mitotic rate of 2 shows that the tumor was pretty aggressive. That means there's more of a chance that it has spread to your lymph nodes. I think your doctors are right that they need to find out if it has spread to your lymph nodes. I think the odds are still pretty low that it has spread, but not as low as if your mitotic rate was zero, for example.

Make sure you have a good and respected surgeon doing the WLE and SNB and I think they should be done ASAP. 

Best Regards, Steve

if clarks level is no longer used then why the heck is my dr using it? hmmmmm. maybe i need a new dr.!!!

It still gets reported because it was used for a long time and old habits linger. But it is now understood that Breslow depth is much more important for staging.

Actually, I'm not completely right. Clarks Level still does play a role with Stage I lesions. It could help detrmine if you are Stage 1a or 1b.

Not diagnosed in April 2011, sorry. was diagnosed June 1st, 2011

Kim, I STRONGLY recommend that you download and read this Melanoma Patient Guide from the National Comprehensive Cancer Network.... It is a very easy read and will explain everything you need to know about your melanoma in non-technical terms which we patients can readily understand ...... It was published in 2010 and is up to date ...

It will walk you through everything ...... I wish to hell I had this when I was newly diagnosed in 2008.....

I'm relieved to read that you were diagnosed last month and that the Doctors didn't screw up and NOT refer you for the WLE/SNB from back in April !! 

 

Aloha, Bob

 

PDF File at the link ....

http://www.nccn.com/images/patient-guidelines/pdf/melanoma.pdf  

Hi Kim -

I want to just say ( not scare - just being informative) that whatever they are speaking about doing, DO IT.   My melanoma Breslow 1.01, not ulcerated, 1 mitotic rate was a SURE THING to not be in my lymph nodes..I fall into the smallest percent that they did find a few micro cells thru (spelling/words are not coming to me right now --- immunostaining i think) IN the sentinal node.   My doctor and my second opinion doctor is not concerned and I am on the watch and wait program which SUCKS. 

Good Luck and FEEL free to get a second opinion as well if need be by another Melanoma Specialist...It never hurts!

Kathy

Hi Kim, and welcome to the forum no one wants to be a member of by choice.

I just wanted to make you aware that melanoma does not always start out in a mole. Although a nodular melanoma (which is what you have) can arise in a pre-existing mole, it is more common for one to develop spontaneously from normal skin. The colors of nodular melanomas are usually black, blue-black, dark brown, or brown-red. However, occasionally they are red, pink, grey, flesh-tone, or light to medium brown. Nodular melanomas are typically dome-shaped and lacking in the ABCD properties, making visual diagnosis more difficult than with other melanomas.

Nodular melanomas have their own mnemonic "EFG":

Elevated: the lesion is raised above the surrounding skin.

Firm: the nodule is solid to the touch.

Growing: the nodule is increasing in size.

 A WLE or wide local excision is also standard protocol when a mole is confirmed melanoma. It is done to help ensure clear margins all around. Both side and depth. Since you are at .99 Breslow depth, a SNB or sentinel node biopsy should be done as well. One is usually considered if the Breslow is .75 mm if ulcerated or 1.0 mm if not. As to not disrupt the drainage path of your nodes, the SNB should be performed at the same time as the WLE.

Hope this helps clear things up a little.

Best wishes, and keep us posted,

Michael 1B

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

Others have covered the basics.  At this point, you are stage IB.  This may change based on the results of the sentinel node biopsy.  Your melanoma did not arise from a mole - that is not uncommon.  However, it doesn't make you a petrie dish for melanoma.  It's uncommon to have more than one melanoma primary.  Only about 8% of the melanoma population do.  A mitotic rate of 2 shows the lesion is dividing.  That's probably a pretty low number for nodular melanoma which tends to be a very quick grower.  Ideally, you'd like to see "< 1".

It sounds like your PCP needs an update on the proper way to handle melanoma.  The biopsy was done, but 1mm margins is NEVER appropriate for any depth of melanoma.  Melanoma cells like to travel so the point of a WLE is to remove any cells that may have traveled away from the original tumor.  Surgery is the BEST thing you can do for yourself at this point as melanoma can be deadly if it spreads.  Different institutions use different values for doing the SNB.  Most use 1mm, though, so you are close enough to err on the side of caution and do the SNB.  Surgical removal at this point is your best option of "getting it all". 

You will need 1 cm margins around the entire lesion.  The WLE will take tissue down to the muscle fascia.  It will take 1cm on all sides of the lesion.  Taking 1cm margins means the removal will be a round hole.  In order to close that hole, they will make an elliptical incision  so they will be able to close the wound.  This will not be some tiny scar but will be inches long and some width.  Much depends on anatomy.  Please make sure you are seeing someone who is well versed in melanoma.  You want an expert doing the SNB.  If the area is in a visible spot, you will want a plastic surgeon to do the WLE.

AZ is an area where lots of melanoma is found.  Lots of sunny days and higher altitude make it a prime location.  (I'm your neighbor to the north (Utah) and we have the same problem).  Now's the time to revisit your ideas about sun exposure including tanning beds and laying out.  If you did either of those before melanoma, it's highly recommended that you stop.  Any tan or burn is damaging the skin.  Take a crash course in sunblock and UPF clothing (protects skin from the sun). 

Best wishes,

Janner

Just got the call from the hospital..... SNB and WLE are scheduled for August 5th, 2011

Good for you. Hopefully your SNB will be negative and you can be staged at 1b which I am as well.

Keep us posted.

Good luck,

Michael

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

Sounds like you arae in a fairly good place until you know more.  Hopefully the WLEm finds nothing more and the SNB is clear as well.  Keep us informed as to what is found.

 

Janner and Mike and Bob have given you much good  iinfo.

I'm me, not a statistic. Praying to not be one for years yet.

Blood work came back yesterday as well as chest x-ray. LDH and LFT are with-in normal ranges and my chest x_ray is too!!! :) :) :)

Awesome news!!  :)

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.