Calling All Melanoma Survivors!

Attention, melanoma survivors: A reader needs your help.

Cory, a young woman who had a melanoma removed four years ago, writes that she lives in constant fear of a recurrence, even though she is doing everything she can to make sure that doesn't happen. She writes, "... there is a not a day that doesn't go by that I don't fear melanoma is somewhere in my body undetected."

Cory also wrote that a doctor told her that melanoma doesn't always show up as a mole, but can be internal, too. And she asks, "How do you detect that?"

Cory, I'm going to answer this one. The answer is, you need to ask your doctor that question. And you might want to ask how likely that is to happen to a woman like you who has had one melanoma removed and no recurrence in four years. I think he will tell you the chances are slim, but you'll feel better if you know.

And here is Cory's request:
"A person blogged on here that you never hear of people that have survived a melanoma and lived a long life talk about it...those are the people I want to find. Where are you?!?!?

Step up and tell your story to others that still struggle."

So, please, if you have had melanoma, and can give Cory some reassurance, please leave a comment below or shoot me an e-mail and I will forward it.

jeanne.sather@gmail.com

Comments

[carver]

Hi Jeanne,

I'm happy to step up and answer this one. I'll answer here in case there are other melanoma survivors that are interested but Cory can also email me if she wants to.

I am a node positive melanoma survivor (stage III) with a very deep primary, plus lymph node involvement and I have not had a recurrence since my last surgery in March 2005. I know stage IV melanoma survivors (a friend who had it in lungs, bones, liver and nodes) and she has been disease free now for over a year after treatment. I know another woman who had melanoma metastasize to her brains and lungs and has been disease free 6 years after surgery. I know a 20 year stage III survivor and many stage I and II long term survivors (one 30 years out). The odds are great with stage I.

In terms of people with melanoma that starts in the skin, the risk factors depend on depth. Below is a link to a site which has a lot of information about melanoma.
That is just a resource with links to all sorts of resources.
http://melanomaresources.info/

Then the link below is a bulletin board where many melanoma survivors post. I think it can be a little scary for lower stage patients which is why some end up joining a listerserv for stage 0 and stage 1 patients. http://www.mpip.org/bb/bbindex.html
is the link and if Cory is stage 0 or 1 she can post and say she's interested in information about Janner's stage 1 listerserv.

Cory can feel free to email me if she likes. My email is on the profile page of my blog. Here's the link to the melanoma part of my blog although most of my posts are a mixture. http://carverblog.blogspot.com/search/label/melanoma%20and%20more

In terms of melanoma that starts in a mucosal or organ site, that is very rare. It is even more rare for someone who has a cutaneous (skin) primary to also have a mucosal or other type of primary. The depth of a skin primary has a lot to do with risk factors for spreading elsewhere but with a fairly thin primary the prognosis is good. I gave the examples of people with poor prognosis to show there are survivors from every stage. I agree with you that she needs to ask her doctor. I wasn't sure if her question was about melanoma which spread to other sites or of a new primary which began somewhere other than the skin. My point is that in terms of the primary, if someone has a cutaneous primary, they are very unlikely to have a mucosal primary. If it starts in the skin and is very thin (breslow depth) the risk is low that it will metastasize. If it's deep there is a higher risk but if she's 4 years out from prognosis, that sounds very good. Even so, it can be scary, and I understand that. Sorry this is so long.

Best wishes, Carver

[Amorette]

Hi, Cory :) I'm a long-termer...not of melanoma, but I was born with cancer and I'm 30 now, so I know the constant fear. I've felt long-term effects of cancer treatment, I know how we're treated differently from active patients, and if you ever need to talk, just let me know :) You have my email.

[jeanne]

Carver--THANK YOU! I will send Cory your e-mail address. Jeanne

[Cory]

Thank you, all that have responded. I feel so light hearted as if I have been living in the dark...I am not alone. It feels good.

Jeanne, I don't know you but you rock! I asked for help and you more then tried to answer the call.

Carver,I so appreciate your response. My melanoma was stage 2, 1.2mm thick with a Clark's Level IV, with positive tumor regression and positive lyphatic invasion. Although they checked my nodes and removed everything and gave me the thumbs up....as you know...fear strikes everyday. My greatest fear is not being around for my children and my husband, I don't want to be taken from that.

The doctor that told me about internal melanoma freaked me out....he wasn't what I call "human-friendly"...he spoke like a robot and pushed fear into me instead of reassurance like I was seeking. I don't see him anymore but am still looking for that doctor that "has it all." I want that question reanswered by another doctor. That is what really scares me the most, the internal cancer that I can not detect. I am all over my skin and my moles. I know better then my derm docs what needs to go and what needs to stay, it is like a radar sense that I have developed....I will check out your sites you posted...so grateful. I'll be in touch!

Amorette, I am so encouraged by your story and in awe. I would love to connect with you and talk.

Thanks again to all for helping with the monkey on my back!

[Sara]

I've had metastatic malignant melanoma for 28 years. I do not give advice about it; I just do my own research and make my own choices and, when I recommend anything, recommend that others do the same.

Meanwhile, even with it in my body, in my lymph system, I live and live pretty well. It is possible. Hang in there.

[Desertpanz]

I am a 50 year old male who was diagnosed with malignent melanoma in December 2006. The site was on my right calf, an inch or so below the knee crease. The results put me at stage IIIB. Lymphendectomy performed in April. So far, I am in full remission. However, I am fully aware that the melanoma can strike again at any time. A man I met during treatment is facing his first recurrence. His initial bout was in 1987. My point is that I do not worry about it recurring in my body because I have no direct control of the disease. I maintain a positive attitude; I live in the moment; I eat a healthful diet; I try to be the best husband/father and friend possible; and my mantra for fighting this disease, from the get go has been "IT WILL NOT DEFINE ME OR MY LIFE". Once it possesses your emotions and mental well being, possession of the body is not far behind. Good luck and I'll say some prayers for you.

[Robin]

Hi Jeanne and Cory...I hope this isn't too late but I wanted to post. I was diagnosed in 1983 with Stage IB, Level IV. My tumor was .88mm. I have been NED for 24 years!! I have the occasional nonmelanoma cancers, AK's, and dysplastic nevi but no MM.
As the years pass you'll find it never leaves the back of your mind (and something suddenly can bring it forward very fast) but it does stop being the focus of your life every day and you can move on.
I had the worst scare in 24 years just a few months ago...it was a mole, had dark sections, bleeding, crusty...turned out to be an irritated actinic keratosis. Talk about relief!! So things like that happen.
Good luck to you!!

[Camille]

Hi Cory, Jane and everyone.

I find this a very inspiring story. I was in touch with David when I was first diagnosed and he is a very kind person. he replied to my mail and made me feel better.

David, holding grandson Cooper, is pictured here with his wife Sharon of 35-years and grandson Caleb. David believes family has been an inspiration in keeping a positive outlook during his cancer experience. A battle with recurrenceIn 1983 David was initially diagnosed with melanoma, an abnormal mole his first warning sign. The melanoma was surgically removed, and

David was cancer-free for eighteen years, maintaining quarterly appointments with his physician to undergo routine screenings.

In 2001, David found out his melanoma had returned in a lymph node in his right arm pit. After surgery, David asked his doctor in Anderson for a second opinion, at which time he was referred to Dr. Theodore Logan and the Indiana University Cancer Center. At Dr. Logan’s recommendation, David entered the one-year interferon program, administering himself shots after 20-days of infusion. Interferon is a type of biological therapy that can improve the body’s natural response to infections and other diseases.

In late 2003 and early 2004, tumors were found in David’s neck, knees and finally in his lungs in February 2004. In April 2004, David was enrolled for treatment in a clinical trial using high dose interleukin-2, another type of biological therapy used to treat skin cancer that has spread to other parts of the body as well as kidney cancer. After only one month of interleukin-2 therapy, scans indicated that David’s tumors were not growing. David did a second and final series of interleukin-2 in August 2004 and his scans have been clear ever since.

All a mental state of mind
After surviving melanoma with multiple bouts of recurrence, David recommends keeping an even keel. When David’s scans were clear, he never got his hopes up; and when his scans revealed a tumor, he never got too down about the situation.

“The better mentally you can stay with it, the better chance you have at battling cancer,” says David. “I just live day-to-day and set short-range goals.”

David feels that his family and work colleagues have been a great source of support throughout his battle. Teachers from Southside Middle School organized a blood drive which resulted in 125 people donating blood in his honor. He also very much appreciates the IU Cancer Center and Dr. Logan’s care, identifying Kristen Crowder, RN, melanoma nurse coordinator, as one of his biggest cheerleaders.

Although David’s health challenges prompted some life changes, David is very much enjoying life. He has become very active in the Anderson Chapter of Relay for Life and serves as chairperson for “Bowling for Cancer,” a fundraising event that supports the signature overnight relay event of the American Cancer Society (ACS) that celebrates survivorship and raises money for ACS programs. He enjoys opportunities to spend time with kids, either with his own grandsons or when serving as substitute principal at his former middle school. David also finds time to work part-time at a school sign business. But David makes sure he schedules in his share of leisure time, recently taking a fishing trip to Florida and a cruise.

David has begun to help others battling cancer by speaking at support groups. David is happy to speak to anyone regarding his experience with melanoma and any of the treatment programs in which he has participated, and welcomes any emails or phone calls. Email David at david.wood@insightbb.com or give him a call at 765-649-2999.