Scalp Melanoma

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12/29/2010 6:57pm
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Replies: 2

I was just given this site by the Regional Cancer Center of Hunterdon County. I was glad to find the site for Melanoma Research. It's nice to know that other people are fighting this type of cancer. I never thought I would be a patient, but I am. I just went through breast cancer with my mom who is 85 and never once complained about her situation. God bless her, she has to care for my soon to be 90 year old dad who is losing is memory. I've lived and helped them with their daily lives for some 5 years now. Now I'm the one my mom and dad are concerned about. I went through a rough patch with this cancer on my head and those women around me in work and personal life can't believe that a woman can get this type of cancer.....There remarks were, "How did you get that on your head, you have all that hair...doesn't that happen to bald men or men who have little hair. They just can't believe that women are just as much prone to this then men are. I'm living proof that you don't mess with this and you get it checked out when you notice it. I was too involved with my work to take the time to go see a doctor. Worse yet, I work in Pharmacy and watch people come in everyday to my work to buy over the counter drugs and RX drugs to make themselves feel better.  Now I'm left with a spot the size of a baseball that has no hair and will never grow any and a rather sizable dent from the depth they had to go to remove the cancer. I have no feeling in this area at all and little behind my left ear and neck where they took the nodes. And this is all due to the fact  I ignored the SIGNS....Now the question for anyone that can help me is what can be done at all too my head. Am I destined to wear a wig for the rest of my life....or is there some procedure I can have to cover this huge spot....My doc came up with tissue expansion under my scalp. This sounds and feels painful.... IS THERE ANY OTHER OPTION FOR ME AND OTHERS LIKE ME....I'M HOPING I CAN GET SOME INSITE TO THESE....

Dynasysman - (12/29/2010 - 9:23pm)

HI there. I'm in New Hope; where in Hunterdon Country are you?  And who treated your scalp melanoma?  Which surgeon? Which oncologist?

My experience is a little different than yours in some ways, similar in others.  I found a lump in my neck; had it removed by a local ENT.  The local physician is a good guy, but he left a large scar and didn't dot all the "i's" and cross the "t's".  In my case, the issue wasn't a scalp problem, but the possibility that he missed something more serious that might led to systemic disease.  I then took my case to the University of Pennsylvania, where they have world-class care and doctors who have done amazing things for me.

My suggestion:  get to a first-class oncology center ASAP, and work with them.  Memorial Sloan Kettering in New York (one of the best in the country) has a satellite somewhere in Somerset County.  I believe that University of Pennsylvania had a satellite up this way (maybe Trenton?)  Either of those would be excellent choices -- not that the Regional Center in Hunterdon is a poor place (it's not!), but the people with more experience will have more and better solutions.

Good luck in your search and fight, and you'll find that this board is filled with wonderful, caring, well-informed people who can help you.

Roger

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill
It ain't over 'til it's over. Yogi Berra
My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

nicoli - (12/29/2010 - 10:17pm)

Hi truwill, we could be twins!

I am a 55 year old woman with a baseball sized bald spot on my head and numbness from my head down to my shoulder from  a skin graft on the head and a neck dissection. They took 23 nodes from my neck and 2 had melanoma. Yes, the bald spot is sunken in, I call it may moon crater. My grandkids laugh and ask me to "moon them" and I lift my hair and they scream and run. I am able to cover the spot somewhat by growing my remaining hair longer and combing it just right.

I will have even less hair when I finish biochemo and radiation. The hair will grow back after chemo but not after radiation. My scalp will then have a permanent bald spot twice what I (and you) have now. I can get a free wig but may just stick to hats and scarves.

All the doctors say it is very unusual for a woman who never went in the sun much, with plenty of hair, to get scalp melanoma. Guess we are just special.

I am so happy to be alive, I really don't care about the hair. I have stage 3 nodular melanoma, very high mitotic index (16). And today is my 1 year survival anniversary! Some measure survival after 5 years, we cool ones measure it from the date of diagnosis, I was diagnosed one year ago today.  

I have known 3 people who have died of cancer in the past 4 years so I was blessed to be able to spend Christmas with my kids and grandchildren. And Saturday is my grandson's 5th birthday party and he and I will pary hard. So I don't have much time to think about hair.

At the risk of sounding mean, you need to shift perspective. Yes, hair is nice but melanoma is a deadly monster that kills. And unless you have stage 1 or 2, you may be in for the fight of your life, literally. Hair is just hair.

Nicki, stage 3b, dx 12/29/2009, local recurrence 10/2010

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24