Just Diagnosed... Little Scared

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2/19/2011 6:27pm
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Replies: 19

I am 37, the father of three young boys, and the sole provider for my family. I was just diagnosed with melanoma on Friday (2/18/2011) and am wading through all this new information. It is intimidating and frightening. I had a growth on my forarm... was large and unsightly but the doctor was not concerned. Initial diagnosis was keratoacanthoma. Now I get this report on a malignant melanoma... Breslow thickness >8mm, Clark level V, ulceration present, mitotic rate of 7. All Greek until I start doing some reading. Now I am almost wishing I had not read anything. Still a little shocked and scared. I am scheduled for a sentinal lymph node biopsy in a week on my birthday of all days. Hoping for the best present ever which would be a negative result.

Happy to have found this forum in my reading. Wish me luck.

Kevin

Anonymous - (2/19/2011 - 6:36pm)

Hi Kevin,

You came to the right place for supprt and information. You will be staged after the SNB (sentinel node biopsy). It is IMPERATIVE that you seek care from a MELANOMA ONCOLOGIST. Other oncologists do not know this disease as well. All of us have been where you are....newly discovered to have melanoma, getting staged, asking questions, wondering about treatments, prognosis and if we are going to make it. You will see that even with melanoma you can live your life, its just going to be different now, lots more doctor appointments, skin checks, possible treatment, etc. Just live each day to your fullest, make a list of questions, dont get too bogged down in STATISTICS, as we all here can blwo those statistics to pieces!

Good luck, keep coming back here,

Vermont_Donna, stage 3a,stable after 4 infusions of Ipi (and many other previous treatments)

oops, didnt mean to post as anonymous....the above post is by Vermont_Donna

Hi Kevin, 

You have found a great place to be.  There are many people here who are going through what you are and we all felt the same way.  We are here to help in anyway we can.,  Ask questions and be a part of your treatment decisions.  Read and learn as much as you can and don't forget we have all been where you are.  There are so many more treatment optionst than there was a few years ago.  So heres wishing and hoping for a good result on the next test.

 

Sharmon.

Hi Kevin, 

You have found a great place to be.  There are many people here who are going through what you are and we all felt the same way.  We are here to help in anyway we can.,  Ask questions and be a part of your treatment decisions.  Read and learn as much as you can and don't forget we have all been where you are.  There are so many more treatment optionst than there was a few years ago.  So heres wishing and hoping for a good result on the next test.

 

Sharmon.

TAC - (2/19/2011 - 6:45pm)

You have come to the right place so.....let us help you!!! There is a wealth of experiences here so ask your questions and if you don't know the questions to ask, we'll help. The first advice is great...get to a melanoma specialist...not every oncologist is specialized in melanoma. Tell us where you live...what the next steps are that have been proposed for you....etc. There are many major melanoma centers around the US that you can contact....where you live will help us to direct you to one of them. Google Sentinel Node Biopsy and read and become informed...It is a diagnostic tool to determine next steps for you...maybe surgery followed by clinical trials , etc. Breathe deeply, you have arrived at a special place with so many who have walked in your shoes....we'll be here, always..so let us help.

Hi, and welcome to the forum no one wants to be a member of by choice. Sorry you have to be here, but this is a good place to be to ask questions.

If you do not mind me asking, where are you being seen? Is it a melanoma center of excellence? Due to the Breslow depth and some other pathology factors you mention, a melanoma center should be considered.

You also say you are scheduled for a SNB (sentinel node biopsy) soon. Is it safe to say that a WLE (wide local excision)will be performed right after the SNB as well? A SNB should be performed before a WLE as to not disturb the lymph node drainage path.

Michael stage 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.

Thanks for all the immediate support. I am located in upstate NY in the Albany area (Niskayuna, NY to be exact). So far, I have only seen my primary care physician and a plastic surgeon who was going to perform the wide local excision. It was the plastic surgeon who immediately referred me for the sentinel node biopsy as he indicated this should be done prior to the wider excision. The followup for the SNB is at Albany Medical Center with a Dr. Ankesh Nigam. It looks like he is in the general surgery group but his specialy is surgical oncology... not specific to melanoma though.

I think the intent was to do it very quickly, but this particular doctor was out of town this coming week and they believed it could wait until the following week. If anyone knows of a melanoma center of excellence in this area, I would be very interested. At this point, I have a much better idea of where to take my car if it has a problem vs where to take myself .

Thanks,

Kevin

Here are the melanoma centers in NEW YORK:

Cancer Research Center
Albert Einstein College of Medicine
Chanin Building, Room 209
1300 Morris Park Avenue
Bronx, New York 10461
(718) 430-2302
David Goldman, M.D., Director

Roswell Park Cancer Institute
Elm & Carlton Streets
Buffalo, New York 14263-0001
(716) 845-5772
David C. Hohn, M.D., President & CEO
Nathalie Zeitouni, MD (Dermatology)

Cold Spring Harbor Laboratory
P.O. Box 100
Cold Spring Harbor, New York 11724
(516) 367-8383
Bruce W. Stillman, Ph.D., Director

NYU Cancer Institute
New York University Medical Center
550 First Avenue
New York, New York 10016
(212) 263-8950
Steven J. Burakoff, M.D., Director

Memorial Sloan-Kettering Cancer Center
1275 York Avenue
New York, New York 10021
(212) 639-2000 or (800) 525-2225
Harold E. Varmus, M.D., President & CEO
Allan Halpern, MD, Chief, Dermatology

Herbert Irving Comprehensive Cancer Center
Columbia University Medical Center
1130 St. Nicholas Avenue
11Suite 201
New York, New York 10032
(212) 851-4680
Riccardo Dalla-Favera, M.D., Director

James P. Wilmot Cancer Center
University of Rochester Medical Center
601 Elmwood Ave. Box 704
Rochester NY 14642
(866) 4-WILMOT
(585) 275-5830

Herbert Irving Comprehensive Cancer Center
New York-Presbyterian Hospital
161 Fort Washington Avenue
11th Floor, Room 1153, New York, NY 10032
(877) 697-9355 (1-877-NYP-WELL)
(800) 227-2762 (Physician Referral)

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.

Kevin,

I'm sorry you've had to join us.  I agree with all that has been said about getting to a melanoma specialist.  Since you live in Albany you might also want to consider going to the Boston area.  We have another poster that goes to Beth Israel which is part of Harvard's medical system.  Also Boston Mass has a very well known melanoma program. 

You are in the scariest part of the journey. Gathering knowledge, and the waiting.  Second opinions is the norm in melanoma world. Your Doctors not only will expect it but many will suggest it!  I personally have had all of my pathology read at more than one institution.  I travel to my melanoma specialist but have a local oncologist also.

Let us know how the SNB goes, wish it wasn't on your birthday!! 

Linda

Stage IV since 06 

 

 

Kevin,

Just to let you know, I am from Upstate NY (Rochester),

Your best bet for Melanoma Specialist would be Sloan Kettering.

 

Jedd D. Wolchok, MD, PhD
Director, Immunotherapy Clinical Trials, Dept of Medicine
 

Associate Attending Physician, Melanoma-Sarcoma Service
Associate Director, LudwigCenterfor Cancer Immunotherapy
Memorial Sloan-Kettering Cancer Center
1275 York Avenue, Room Z-1462
New York, NY 10021
Phone: +1 646 888 2395
e-mail: wolchokj@mskcc.org

If you need someone to help you through the Melanoma Maze just contact me  through facebook or

Melanoma Missionary

http://melanomamissionary.blogspot.com/

Just Diagnosed

http://www.box.net/shared/c8yuko9a28

Kevin     You have been given some great advice here and good references for melanoma doctors.  We also live in upstate NY (not too far from you, in Ballston Lake) and my husband who was diagnosed last Jan. 2010, goes to Dana Farber in Boston and see Dr Hodi and Dr Russell there. We have heard wonderful things about Sloan Kettering, but Boston was a better match for us.  My husband had his initial surgery at Abany Medical Center and we have a great local doctor in Saratoga, but we really wanted to be followed by a melanoma specialist.  This is a difficult time for you, adjusting to your diagnosis, and awaiting the next step, and then waiting the biopsy report.  But things will all calm down soon, and you will feel better about your situation after you have lined up a melanoma doctor.  Take Care!!

Valerie (Phil's wife)

Hi Kevin -  Obviously you can see you are not alone.  I just had wide excision and sentinal lymph node biopsy a week ago Thursday.  My "melanoma madness" started the first week of January.  I know how you are feeling.  I have three kids myself and 42 yrs old.  This is a scary time for you but do know you are getting all of this VERY IMPORTANT information right from here.  The people you are hearing from do know their stuff, they are goin' thru it. 

Take all the advise you can get from here.  My next stop is either University of Penn or Sloan in NY. I am in New Jersey (and that is happening whether the results are fabulous or not so fabulous.  I want to try to be a step ahead if I can!

God Bless and hoping for good news from you.

Kathy (stage who knows as of yet?) :)

Thanks for all the great information and support. It definitely helps to know I am not alone in dealing with this.

Kevin

Anonymous - (3/9/2011 - 11:22am)

I was diagnosed with Stage IV Melanoma in January 2011. This is all so overwhelming. I am currently on Temodar and just found out I tested positive for the B-RAF mutation.

Anyway, hope you had a nice birthday and your biopsy went well!

Kevin, you've received some great advice in prior posts and all I can add is this.  I was diagnosed at Stage IIIc (14 malignant nodes) in 2003, received biochemotherapy treatments at the University of Colorado Cancer Center, and today am healthy with no evident disease.  Hang in there and keep the faith that you too will blow away any statistics you may have read.  I've blogged about the lighter side of the journey at www.hotelmelanoma.blogspot.com and it might provide some smiles and encouragement.  Take care.

Great Advice - all around.  I only have a few things to add. 

1.  DON'T spend too much time on the Internet - not this early.  There are sites out there and statistics that will scare the crap out of you - and that's not good at this stage.  You'll hear from doctors and oncologists that nothing has proven to be effective in fighting this type of cancer.  But, they're NOT on the cutting edge and they won't be able to give you the best advice or outline the best treatment options. 

2.  DO make sure you see a Melanoma Oncologist as soon as you can - even before surgery (I know that seems not intuitive).  Just keep asking for referrals until you end up at a Melanoma Center with a Melanoma Onc.  For example, even being referred to the Mayo Clinic...and driving 12 hours there TWICE...I wasn't seeing a Melanoma Specialist.  I had assumed that since I was at Mayo, I was seeing the best. 

...what else do i wish people had told me when i was just starting out?...

3.  Believe that this IS the hardest part.  You will become more comfortable living with the idea that you have this.  Honestly.  But, early on, just LIVE and try not to think too much about it.  But, don't put off moving forward to get medical attention. 

4.  Take somebody with you on every single consultation.  You WILL hear different things and its VERY helpful to compare those messages. 

Good Luck on the Sentinal Node test and please keep posting.  - Shari

Turned out the biopsy was not on my birthday afterall... but I did go through it yesterday. Long day at the hospital, but glad it is over with. I am left handed and my left arm is in a cast due to the wide excision and the need for a skin graft taken from the same arm. Under the arm is a little sore but not too bad. The tentative good news is that the surgeon said the lymph nodes were small and looked very normal. Still need to wait on the results from the biopsy, but I am hopeful for the moment. I will hopefully have the results by the time I return to work this coming Monday. Thanks again for all the support and information.

Kevin

Good news to report. Got the biopsy results yesterday... everything was clean. Lymph nodes were clear as well as all the flesh taken from my forearm. My arm looks like it was attacked by a small shark, but this I can live with. They still want to do a PET scan in coming weeks to make sure nothing was missed, but they appear confident that it is gone.

Thought I would share the good news.

Kevin

Great news Kevin!!  I'm glad they are doing follow up with a PET. Better to be proactive then reactive.  Ask them what the future follow up will consist of.

Enjoy your family today with the stress off of you!

Linda