This is all new to me!

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8/16/2010 11:45am
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Replies: 8

Hi,

This is all new to me.  I just went to my doctor and had a spot on my neck removed.  After the biopsy they said it was in fact Melanoma and I go on the 25th to have a wider area excised.  They said the Breslow level is 1.27mm with margins or markers up to 1.5mm and a Clark's level III.  What I am wondering is should I be worried??  My dermatologist referred me to an oncologist and I am now waiting on that appointment.  I know nothing about all of this except what I have researched online and that can lead me to think everything is okay at the same time lead me to think everything in not okay.  If anyone could offer some advice I would greatly appreciate it.

Thanks in advance!

Janner - (8/16/2010 - 12:04pm)

Please make sure you see the oncologist BEFORE you have the wide excision.  THIS IS VERY IMPORTANT.  You need to have a Sentinel Lymph Node Biopsy (SNB) PRIOR to the wide excision.  The SNB checks the first lymph node in the drainage path to see if any melanoma cells have traveled there.  If you have the wide excision first, the extra tissue removal may alter the lymph drainage path and the SNB could be compromised.  Right now, you are in limbo in terms of staging.  You need the SNB and the wide excision to see what's next.  It's hard to say that "everything is okay".  It may be.  It may not be.  Much depends on the results of the surgical procedures and staging.   In fact, if your dermatologist is scheduled to do the wide excision, I'd probably just cancel that.  You want a surgeon to do the SNB.  You will be put under general anesthetic at the time.  They do the SNB first, and then will do the wide excision after the SNB while you are asleep.  Two birds with one general anesthetic.   It would also be good if the oncologist you are seeing is a melanoma specialist instead of just a general oncologist. 

Hang in there, but talk to an oncologist FIRST!

Best wishes,

Janner

fonteman - (8/16/2010 - 12:22pm)

Unfortunately because I have no insurance and am forced to go to a State Hospital I am kinda at their mercy.  :(  I just went to the derm this past Wednesday and the surgical appt for Aug. 25th is going to be done by a surgeon but they still have not sent me an appt for the oncologist.  I have been calling everyday to help "speed" things up but to no avail.   What do you mean by, “If you have the wide excision first, the extra tissue removal may alter the lymph drainage path and the SNB could be compromised.”  Sorry, like I am learning more than I thought I ever would.  Thanks again.

Janner - (8/16/2010 - 4:42pm)

The concept behind the Sentinel lymph node biopsy is this:  they inject radioactive tracer in the center of where your mole was removed.  That tracer follows the natural lymph drainage paths to the first lymph node.  This is the Sentinel Node.  (Sometime, there is more than one sentinel node).  When you start cutting out large chunks of skin, you may change the drainage paths.  So if you do the Sentinel Lymph node biopsy AFTER the wide excision, the drainage path may not be the same path as before the wide excision.  Since you want to test the sentinel lymph node to see if any melanoma is there, you don't want to have any change in the drainage paths.  That basically means a sentinel node biopsy done after the wide excision may be useless.  No one can guarantee that the same sentinel node would be taken.

So, I suggest you call the dermatologist again and ask why he hasn't scheduled you for a SNB.  The general cutoff for having a SNB is 1.00mm.  You are well beyond that.  Yes, you don't have to have one.  Yes, it is mostly done as a diagnostic tool.  If you have melanoma in the lymph node, they typically remove all those nodes and possibly offer you treatment or clinical trial or observation.  If you don't have the SNB, you would want to be monitored very closely. 

Please continue to research and talk to your dermatologist about the sentinel node biopsy.  It's possible they didn't schedule it because of insurance.... but they should give you all the costs and pros and cons and let you decide.

Best wishes,

Janner

sorry you have to join us here, I just recently joined too and I am new also at the Melanoma.  I was dianosed April of this year.  I am 39 female and I have been diagnosed with stage 3B with no primary found.  Mine landed in a lympe node in my groin area, they call it, I call it upper right thigh.  Anyway, I had the surgery to get it out and it was the size of an egg!   they went in right away and took all the lympe nodes around it out.  28 of them!  They all tested negative thank god.  I have been taking, the interferon shots.  Those are no fun, I completed 3 weeks at high dose at the cancer center then I had some eye problems from that, blurry vision, lights are real real bright, cloudy rooms so they stopped it.  I was off that for about a month and went back on them this past week for the low dose home self injections.  I praise anyone who took these and worked.  No way....I am stopping the low dose end of the month and going back to work.  I have been told by several specialists including my surgeon that 30 days at high dose is just as good as doing the whole year.  I am going to combine my low and high, add a week and call it good.  I know how you feel if being new and confused and everyone using all these abbreviations for things.  My life has totally changed since being dianosed.  But I am not going to let it rule my life.  I am going back to work and going to live everyday to the fullest and hope the "beast" stays away.  I won't have a scan until December and then I am sure I will worry again.  Until then, at least I did some of the interferon.  Good luck to you and keep us posted....Teresa in Indianapolis

Remember what's important and make everyday count

jwb355 - (9/26/2010 - 8:43am)

Hi,Teresa

I have also found myself with stage 4 melanoma I am 51yrs old male.I ignored what started as a bump that after a year started changing color and finally went to a dermatologist. I had the biopsy done and found out it was stage 4 mel.and was sent to a surgeon,I had a wide exsion on my arm and all the lympnods removed under my arm since two tested positive for cancer. That was in Aug. this year,now I have had my first visit with a oncologist and they are going to do a PET scan and suggested I do interferon for a month.I really am in the dark about which way to go. The doctor says if I have it my chances are 11 percent better if I take it than not taking it. I am worried about the side effects but also worried about the cancer coming back.Thanks for your post and stay well..Jerry in Georgia

W. - (9/27/2010 - 4:27pm)

Hi Jerry,

it sounds like you could possibly be stage 3 instead of 4?

With only lymph node involvement and no distant metastases, you would be stage 3 and Interferon is a typical stage 3 treatment. Maybe you had a "Clarks Level 4" melanoma?

To get advice about the pros and cons of Interferon, I recommend to create a new topic on the board. In this way, many people who have experience with Interferon will see your message and can respond.

Kim K - (8/22/2010 - 3:12am)

I was in a similar situation where the derm DID the WLE prior to the SNB.  DO NOT DO THAT!  Janner explains it well.  The ONLY reason why I had the WLE prior to the SNB was because I was scared and only just found this site.  After having the WLE and going to the surgical onc. did I realize the advice given here was accurate.  Please promise me you see the surgical onc. first, your life depends on it.

As for me, I had a negative SNB and became stage IV 7 1/2 years later.  I had the WLE prior to the SNB so don't really know if we got the correct nodes.  My spread was via the bloodstream however which is more rare with mel.  On the positive side I am now NED after IL-2. 

My original tumor was 2.06 mm,  Clark IV with no ulceration or regression and a low mitotic rate.  There was a low chance of it spreading after my SNB was negative, but it did.  You are NOT out of the woods, please have the SNB first and then follow the advice of a good surgical oncologist and derm.  Sometimes I wonder if the derm did the WLE prior to get the insurance money and because he didn't stay current with his medicine.  How much is your life worth?  Just because you use a State hosp?!  They know the guidelines, print them off and show them to your derm.  I would let your surgical oncologist do the WLE at the same time as the SNB.

Trust me, WE are correct on the current recommendations.  You need the SNB first. 

Best of luck you are NED forever,

Kim K

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

fonteman - (8/25/2010 - 8:29pm)

Thanks everyone for your replies.  I have learned ALOT in the past weeks and appreciate everyones input.  I just went to the doctor today and was supposed to have the wide excision done.  The surgeon came in and said "no, we need to do an Cat Scan to see if it has spread to the lymph nodes before we do the wide excision and we will remove the lymph node(s)  if needed when we do the wide excision."  Thank you Jesus for answered prayers.  Since I have received so much good advice from you guys I am very thankful that God has His hand in all of this and it will be okay.  Thanks again for all the good advice and my prayers are with each of you.