New to Melanoma and SCARED

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9/7/2011 9:22am
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Replies: 24

Hi everyone - I was just diagnosed with Melanoma in August. It all happened pretty fast. I finally drug my butt to the dermatologist.. even though I had the mole and it didn't look right for a while. My initial appointment was August 17th, I got a call on August 23rd saying it was a 1mm melanoma.. and on August 31st (last wed), I had a big chunk of back removed and a lymph node taken out to be... tested. I seriously have been a mess. I have cried everyday and have been scaring myself looking at stuff on the net. I have my post-op appointment on Thursday and am hoping for the best but scared of the worst (especially since the surgeon freaked me out and said it was a little swollen). I will tell you one thing, it really opened my eyes to being smart in the sun. I guess I just need to talk to other people going through it at this point because as supportive as my hubby, family and friends have been... I still feel kinda alone with this one. So that's all.. nice to reach out to you all.

I am sorry to hear about your diagnosis.  I know it is impossible to do this, but try not to panic.  Most melanomas are earlier stage, and are dealt with largely through surgery..  at 1 mm you may be Stage I or early Stage II.  If the lymph node comes back with tumor cells that will change things, of course, but the odds are still in your favor.

Melanoma is a stubborn, nasty cancer that doesn't fight fair.  Still, most people in the early stages beat it, and a lot of people in the laters stages do very well.  The treatment landscape for advanced melanoma is changing very quickly.  Untill this year, no new drug had been approved for advanced melanoma in 13 years.  Now we have had two new drugs approved in this year alone, and at least one more is likely to be approved next year.

So, try to take a deep breath and work through this anxiety.  If you find that the lymph node is involved you will have a lot of new decisions to make.  If that happens I recommend that you be sure you are being treated by a team that sees a lot of melanoma and is aware of the latest developments in treatment.  And post here again so you can benefit from the insight of patients who have been through this before.

Tim--MRF

Thanks Tim.. that really does make me feel better.  I know this sounds horrible but I pretty much have treated this like a death sentence.. it just scares me because I am 31, I just got married...  I feel like everything I was looking forward to is on hold and is questionable.  I find out about the lymph nodes tomorrow morning..  and then after that, depending on the outcome, might take my case to a Cancer Center (since I live near big hospitals in Philadelphia).  But, this last week has been the worst.. I never had surgery of any kind so i was a nervous wreck leading up to the surgery (even though it was outpatient and not as bad as I made it out to be), and now I am even more of a nervous wreck waiting for the results.  Thanks so much again for your thoughts and advice!

lhaley - (9/7/2011 - 9:50am)

Welcome to the board.  Hopefully you can get some information that you need, but unfortunately this site can also scare the h out of you.  There are many success stories but many of those people tend to drift off and are out living life.

Untill you know the results you can't plan on your next step. If the node comes back clean then your done. You will continue to watch for change in your body. Have your Dr show you the proper way to check for enlarged lymph nodes in the future. However, even an enlarged lymph node does not have to mean cancer. The node can be inflamed for different reasons and it could be as simple as an infection.  You should now be on a regular schedule to see the dermatologist. 

If the node comes back positive, step back and find a Dr that specializes in melanoma. It doesn't hurt to get more than 1 opinion.

Fear is normal when diagnosed, especially since your still in limbo. It will still take some time to get used to the new "normal" but your fears will subside.  When plans are in place it also helps emotionally.

I hope you have a good support system. Take someone else with you to Dr appointments. Always have a written list of questions ( you will appreciate it and your Dr will also).  Ask for a copy of all written pathology tests and keep them in a folder. If they suggest you do any scans make sure to tell the hospital to give you a DVD or CD of the scan.  One more thing, when you read the pathology from the original report do not mix up the Clark scale with staging! That is often a mistake and really upsets peope when they don't realize there is a difference.

Let us know how it turns out! 

Linda

Stage IV since 06, presently NED (no evidence of disease)

Thanks Linda,

Again, all stuff to think about and put my fears at ease (as much as I can).  I don't completely understand all of the scale stuff yet - but will.  It has made me sooo much more aware already of the dangers of the sun.  I am fair skinned, used a tanning booth (sad to say) a handfull of times a few years ago and have gotten some nasty sunburns.. but I was naive.  I always thought if something did pop up I would have it cut off and that's the end of that.  Even if the nodes come back negative tomorrow, and I am praying they do, I have a whole new mind set and will do my best to use this experience to educate others.  I watched the group on Jersey Shore over the weekend and just thought about how horrible the "T" in GTL really is.. lol.  Anyway - I will be sure to let you all know how I make out and will come for continued support.

Cindy

CarolA - (9/7/2011 - 10:44am)

Tim and Linda have really put the proper perspective on this, so read, and re-read their messages.   I am just chiming in to tell you that this initial shock and fear is so very normal.   I cried every single day after I got "the call" from the dermatologist.   And then when I researched on the internet, well, that didn't help me feel any better at all!   I tend to be over emotional anyways, so I really jumped into the hole melanoma put in front of me.   I ended up asking for something, and was Rx'd xanax, which I only used on the day of appointments, so I could have myself collected and not cry.   Really.   Just one .25 dosage would make me less anxious, less emotional and allow me to go the appointments with my head on straight!  

Know what?   I haven't jumped into that hole in a while!   It's been over six years since my original diagnosis of Stage III, two nodes mini involved, no interferon, just watch and wait, and operate.   Lots of appointments, plenty of scanxiety.  

Again, I want to emphasize the normalcy of your fear.   I didn't listen to the advice to stop researching about melanoma before I knew all the facts about my diagnosis (like I was Clarks Level IV, NOT stage IV like I thought) 

Those of us who are living with it,  we go to our routine appointments, have scanxiety when that time comes.   For me:   hindsight is 20/20.   I became angry that I was giving melanoma SO much of my thought time (and I do mean a lot), wondering and imagining---it was better to push myself out of the funk and fear and live and enjoy, regardless if my next scan was just two days away.  I'm fortunate that practice made perfect, sort of, on that for me.   Six years seems like a very long time now.   I want you to know that it can get easier.   I hope and pray that tomorrow will feel like a load off your back when you see your doctor.   Good luck.

CarolA~Amherst NY

Stage III, NED since May 2008        

CarolA

Erinmay22 - (9/7/2011 - 12:31pm)

Sorry to 'meet' you this way but know you are not alone!  I had a mole on my back removed Oct 2010.  So I am coming up on my 1 year since diagnosis.  Mine was 4.5 (upper right back) with ulceration and nodular.  At the time in my dermatologists office I had no idea what any of that really meant.  She just kept looking at me saying 'it's nodular...  it's nodular..."  

I can tell you that researching things will scare you - but let's be honest... you can't help yourself!  I always tell my docs - plan for the worst but hope for the best!  I can also tell you that it gets easier.  I was crying every day, several times a day.  I still have my days - but they aren't as bad.  Hang in there!  There is a great group of folks that can help answer your questions.  Family and friends are great but talking with someone who actually really knows what you're going thru is different.

Positive thoughts/prayers your way!

Erin

www.melanomaandthecity.blogspot.com

"people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

Hi Erin...

Yes, what a way to meet, huh? LOL..  but it really is helping today that I am talking to all of you guys.. I have never cried so much in my life as I have been since last week.  I cried before the WLE and SLN.. I cried in the recovery.. I cry at home.. I cry at work.. I cry in the car..  and the paranoia.. now I think everything is Cancer.  My husband, friends and family have all been great but I keep getting "Everything will be alright".. and maybe I shouldn't be thinking this way but I keep thinking "Well what is everything is not alright".. it's so crazy.. def. didn't think at the beginning of the summer that I would be ending the summer like this.  I would love to talk to you more and thanks again for writing. 

Cindy

Cindy -

Yeah it totally sucks to meet folks this way - but I've met some awesome folks along the way so far!  and don't worry about the crying - I was crying ALL the time...  little thing would set it off.  it still does every now and then.  I didn't cry at my derm's office but I remember her looking at me when I was walking out saying ' breath Erin..." 

I got home, took my dogs to the dog park and then had my first hyperventilating cry in the car.  It was like I just needed to get it out.  It wasn't fair - a week earlier I sat in her office and she told me over and over again it was nothing, in 2 weeks I'd get a pathology report in the mail... 

I had also resigned from my current job in North Carolina the same week...  what would happen if my new company wouldn't take me (they still did)...  I wouldn't talk to family on the phone because you could tell they were crying as they kept saying 'it will all be ok". 

But like I said it gets easier...  and yes paranoia!  scanxiety, etc - don't think those ever go away!  :)  but feel free to email me if you have ?'s or just want to vent!  That's ok to do too! (erinmay22@hotmail.com). 

Hang in there!

Erin

www.melanomaandthecity.blogspot.com

"people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

Hi Erin...

Yes, what a way to meet, huh? LOL..  but it really is helping today that I am talking to all of you guys.. I have never cried so much in my life as I have been since last week.  I cried before the WLE and SLN.. I cried in the recovery.. I cry at home.. I cry at work.. I cry in the car..  and the paranoia.. now I think everything is Cancer.  My husband, friends and family have all been great but I keep getting "Everything will be alright".. and maybe I shouldn't be thinking this way but I keep thinking "Well what is everything is not alright".. it's so crazy.. def. didn't think at the beginning of the summer that I would be ending the summer like this.  I would love to talk to you more and thanks again for writing. 

Cindy

Carol,

Thanks so much for replying...  Glad to hear that you are doing well since your diagnosis!  Yeah, I am beating myself up for ever tanning, for ever not using sunscreen, etc. etc.. but you are right hindsight is 20/20 and I am trying to look forward and realize this is not a "death sentence"...  This has just been a VERY rough week.. scariest week in my life actually.. if that makes sense.

Thanks again!

Cindy

RMcLegal - (9/7/2011 - 12:29pm)

Sorry to hear you've become a guest of the Hotel Melanoma.  You can't help but be scared at a time when you're awaiting results on the lymph node, but do your best to turn your fear into positive actions-- like informing yourself about melanoma so you can be your own advocate in getting the best available care.  I was diagnosed at Stage IIIC (14 malignant nodes) in 2003, underwent biochemotherapy treatments, and I'm still here and healthy.  There are lots of folks out there like me.  Best wishes to you.

Rich

www.hotelmelanoma.blogspot.com

Hotel Melanoma..  hehe... def. not my first choice check in.. but I am here lol.  Thanks..  Hearing that you are here and healthy makes me feel much better and give me hope!  I def. don't feel alone after visiting here today.  I guess I have to take things as they come - but just the fact that I had to visit an Oncologists has just turned my world upside down...  Nice to meet ya!

Cindy

Hotel Melanoma..  hehe... def. not my first choice check in.. but I am here lol.  Thanks..  Hearing that you are here and healthy makes me feel much better and give me hope!  I def. don't feel alone after visiting here today.  I guess I have to take things as they come - but just the fact that I had to visit an Oncologists has just turned my world upside down...  Nice to meet ya!

Cindy

Hi there - your situation sounds so similar to mine!!  I was diagnosed last fall, mine was 1.21mm nodular melanoma.  I also had a '"chunk" of my back removed, along with 5 lymph nodes that were tested (one of which was quite enlarged per my doctor) and came back negative.  I understand completely how you are feeling.  I was scared and worried out of my mind, and did so much research!  A lot of the information I found just worried me more, but I feel much better now about what I know - knowledge is power!!  I have a great support system, and they have listened to me "obsess" over my diagnosis for the last 10 months, and I'm finally starting to ease up some and not worry quite so much.  What I've found is the more positive I am about my future, the less I worry and the more thankful I am every day just to be here and to have the family & friends I'm blessed with.  I wish you the best and am thinking positive about your test results!!!  Please let us know what you find out, and try not to worry.  It sounds as though it was caught early, and all should be okay!!!  And above all else, no matter what, you are not alone!!!!

Shelley, Stage 1b

Just keep swimming...Just keep swimming!!!!

Hi Shelley,

Wow - our situation does sound similar!  Yeah.. my back scar is about that size...  but the brusing from the SLN is even worse I think lol..  I wish he never would have said anything about the lymphnode.. because now I am thinking the worst, as you can imagine.  It could have been something as simple as shaving my arms the night before, ya know?  I am trying to be hopeful.  The first thing my friend, who went through the same situation, said was "Don't look on the internet".. so what do you think the first thing I did was lol?  Thanks so much Shelley and I will let you all know how I make out and won't disappear even if it's negative.  This has just opened my eyes up to how serious Melanoma really is!

Cindy

Hi Shelley,

Wow - our situation does sound similar!  Yeah.. my back scar is about that size...  but the brusing from the SLN is even worse I think lol..  I wish he never would have said anything about the lymphnode.. because now I am thinking the worst, as you can imagine.  It could have been something as simple as shaving my arms the night before, ya know?  I am trying to be hopeful.  The first thing my friend, who went through the same situation, said was "Don't look on the internet".. so what do you think the first thing I did was lol?  Thanks so much Shelley and I will let you all know how I make out and won't disappear even if it's negative.  This has just opened my eyes up to how serious Melanoma really is!

Cindy

Take care and God Bless - hope to hear good news from you soon!!!

Shelley

Just keep swimming...Just keep swimming!!!!

Hi Shelley,

Wow - our situation does sound similar!  Yeah.. my back scar is about that size...  but the brusing from the SLN is even worse I think lol..  I wish he never would have said anything about the lymphnode.. because now I am thinking the worst, as you can imagine.  It could have been something as simple as shaving my arms the night before, ya know?  I am trying to be hopeful.  The first thing my friend, who went through the same situation, said was "Don't look on the internet".. so what do you think the first thing I did was lol?  Thanks so much Shelley and I will let you all know how I make out and won't disappear even if it's negative.  This has just opened my eyes up to how serious Melanoma really is!

Cindy

Janner - (9/7/2011 - 2:40pm)

Hang in there. The waiting never gets easy, it's just something we have to work through.

I was diagnosed stage I 19 years ago (.58mm) at age 29.  There wasn't even an internet then to research.  All the info I found (medical books in the university library) basically gave me a death sentence.  Fast forward 19 years.  I'm still here, and still stage I.  I did happen to have two more melanomas - independent of the first one.  (Only about 8% of the melanoma population have more than one).  The last one was .88mm and was 10 years ago.  Still here.

Don't pay too much attention to the "enlarged" lymph node.  Something as simple as the biopsy could cause it to react.  Now if the doctor had said it was "black", I'd be much more worried.  But even if the node comes back positive, this isn't a death sentence.  Just take this one step at a time.  As much as you want to "research", until you know the results of the SNB, you'll just end up scaring yorself.  Give yourself a break and research when you KNOW what you're dealing with.  And remember, if you need a little "help" like an anxiety reliever or an anti-depressant, it's pretty normal.  You've gone through a shock and sometimes we need a little help to get us over the hump.

Best wishes,

Janner

Thanks Janner.. wow, so good to hear your successful experience with Melanoma..  hearing stories and advice like this makes me feel so much better and hopeful.  I just might need to talk to a doc about the "anxiety help".. I am an anxious person to begin with so this just has put me above and beyond... 

Thanks again!  Cindy

I found out I had melanoma June 2, 2010 after having a mole removed off my right shoulder.  I dont know the depth as I never asked my derm.  I have not been back to him.  I am stage 3 with 3 positive lymph nodes.  I did not find this out until July 19, 2010 when I had my SLB.  I agree with everyone else on the board that stress is the worst of all.  I also cried and cried.  I thought it was a death sentence.  I am not sure if this ever really gets better except with time.  I have not had any scans since June of 2010 and I have been on Interferon for 10 months.  I have a lot of information out there about my experiences.  I am scheduled for CT scan October 3 and wont get the resaults until Oct 20 at my appt with Onc.  This whole experience has changed my life forever.  I lost my job after 11 years.  There was just a lot of stress over the last year.  I am on anxiety medication which really helps.  Here I am a year later and still somewhat stressed.  I worry about the future as I am 36.  I pray for the best at this point.  I believe I will feel better once I have my scans back.  Hopefully that will mean this is over for a while anyway.  Good luck to you!

Don't sweat the small stuff. There are bigger fish to fry!

Hi, Cindy.  I found out about my melanoma the first of July. Mine was on my foot, I had to have skin graft surgery and my sentinel node came back positive for microscopic cells, so then i had a groin dissection about four and a half weeks ago. When all this happened, i have never been so scared in my life. I would cry a lot, too.  i would have a good day then cry all day the next.  Do follow everyones advice about reading too much on the internet. Educate yourself on reliable sites, but don't pay attention to all the studies and statistics. Those are based on a population, everyone's case is individual. I worked my myself into a very fearful state reading the internet so much. It took my doctor really fussing at me to make me stop. Remember even if your node is positive, your lesion was small. Mine was a 1.57, no ulceration, but a pretty high mitotic rate. That's how my doctor thinks it got to the node. With time, you will start to think more clearly and rationally. My oncologist was very highly recommended, and he thinks with all my factors, I only have about a 10 percent chance of a recurrence. He feels i most likely am cured. Just listen to your doctors, not the internet. Best of luck to you!

Hi there,

I'm very sorry about your diagnosis. I am a Stage IV survivor diagnosed in 2005 and I'm NED as of Dec 2010. I had the TIL therapy at NIH in 2006. I want you to know that there is a melanoma patient support group here in Cincinnati and we are having a happy hour at the Blind Lemon in Mt. Adams tomorrow evening at 7:30pm. My name is Lisa Russell and if you choose to come, I will have a white baseball cap on.

I am a member of a local non-profit, Melanoma Know More. This is a very good discussion site but if you want to meet, visit our website melanomaknowmore.com and you will find ways to connect to the group in this area.

I hope to meet you tomorrow. Stay healthy!

CKasper - (9/9/2011 - 3:47pm)

Hello,

 

Don't be scared be mad!!!   I have been dealing with Melanoma since 1984.  The first time I was scared, the second recurrence I was mad and I still am mad and I think that's why I'm still here.  Fight Fight Fight.

Good luck to you and know that everyone here pretty much knows what your going through.

 

Best Wishes,

 

CKasper