I have just been diagnosed (3 days ago) with Malignant Melonoma approximately 0.25 mm in thickness. There is an associated melanocytic nevus. No evidence of ulceration, regression, intro-vascular involvement or satellite metastasis. The lesion extends to lateral margins. I was told to go to a surgeon and to an oncologist. I need to be informed. Do I have time to pick my doctors or should I just go with the ones my Dermatologist sent me too? What steps should I be taking and how quickly should I be taking them? It is my understanding by what little information I have been reading on the internet that level II can be cured...is this true...Also, I love the outdoors...does this mean no outdoors or just putting block out before I go outdoors...Any guidance and/or information you can send my way would be appreciated. Thank you. :-)
Let me begin by saying that I am sorry that you are having to deal with this. I also would like to point out that I do not think that you are "stage" II - you are a Clarks "Level" II which is often confused with stage.
With your breslow and the non-involvement of the other areas, you are probably a stage I. This is a much better place to be if you have melanoma.
I would think that there is time for you to see a doctor that you want to see, but ideally they should have melanoma experience. With your breslow, you are typically looking at an excision and regular skin checks. It is a very good idea to take measures to protect yourself from peak sun exposure from now on.
I wish you all the best and please keep us posted.
I would concur with Mahnee. At a thickness of .25, you are probably not Stage II, but will probably staged at level I.
Just a note of clarification: there is no "cure" for melanoma - there is only treatment. In your case, if the numbers bear out, it seems as if you've caught this very early and the prognosis looks very, very good. As Mahnee stated, treatment will most likely involve wide excision and then regular skin checks for 5 years. However, you will need to be diligent for the remainder of your life.
At this stage you do have some time to search out the doctor of your choice. I wished I'd have known that when I was first diagnosed. I wouldn't wait overly long, however. Melanoma can be aggressive and fast growing, so I would definitely get to a doctor within a month. The earlier you catch this beast, the better off you are. And do go to a doctor that specializes in melanoma. It is worth it.
As far as being out of doors, no, you will not have to live like a mole. But you will have to take precautions. Keep in mind that even on cloudy days UVA/UVB rays are still bouncing around, and the sun's rays can bounce off of things such as concrete and the ground. Know the proper way to sunblock, and use it often. Protect your eyes, and wear a hat. Realize that you are more at risk than most people, and this applies to any children you might have. Incorporating sun safety for yourself and your family will enable you to enjoy the outdoors as much as you ever did before. Oh, and avoid tanning beds.
Good luck to you, but I think all will be well for you!
Mahnee...that you for you concern...I hope your right about the Stage being I, but on my pathology report it states Level II...what is breslow? If they do chemo or radiation, what am I to expect? Also will I still be able to go to the beach or spend a day in the yard if I have block out on? I checked out the surgeon and oncologist that my dermatologist had recommended...both are affiliated with Jefferson Hospital which is a very, very good hospital. Also my oncologist is a director of a melonoma center which is also affiliated with Jefferson Hosiptal. I was told to get a second opinion regarding my biopsy by another radiologist. I was told that the pathology report is only good as the person reading it. Any suggestions or comments?
I just want to clarify some things for you, if I may.
With a melanoma diagnosis, there are 2 staging procedures. I've no idea why the medical community keeps both, as it causes more confusion. Let me see if I might be able to explain this for you. Historically, doctors used what is called the Clark's Level of Invasion to stage melanoma. This consists of 5 stages. I've tried to figure this system out, but it consists of depth of skin levels and seems so complicated to those not involved in the medical field. Even those involved in staging admit this method is not the best for staging, yet the Clark's Level is still used on pathology reports. For example, my Clark's Level was IV, which had me pretty frightened!
BUT! The Breslow Level of Invasion is slightly newer and has proved to be a more reliable method of staging melanoma. Very simply stated, the Breslow method uses the thickness of the melanoma to assist in staging the melanoma. When comparing Breslow to Clark's the numbers can seem badly skewed. The thickness of my melanoma was .7mm. For Breslow, that is an extremely thin melanoma, yet somehow with Clark's, I was a level IV. Go figure.
Now, many other factors come into play when staging melanoma: ulceration, slow growth vs fast growth, surface vs depth, nodule, etc. When staging melanoma the entire melanoma must be looked at, and that is often why melanoma patients are not officially "staged" until after surgery, when the doctors have all the information they need. I wasn't offically staged at IB until after my WLE, though it was a good guess that I was stage I. So see? It's a little more complicated, but there is a difference between Clark's Level and staging.
For a melanoma that .25 in thickness, I strongly doubt you will be doing ANY radiation or chemo. Radiation and chemo has shown to have little effect against melanoma anyway, and, if used at all, is brought in during stage IV. I'm quite surprised you are being directed to see an Oncologist! Wow! What will s/he do? Your melanoma is so small, and it should be such a simple procedure to treat, but perhaps your doc wants to bring in an onc just to be sure?
As far as a second opinion? It can't do any harm, I guess. If it will make you feel better and give your mind ease. But, keep this in mind: your melanoma is extremely thin and small RIGHT NOW. It may be slow growing, it may be fast growing. The doctor may have removed all of it with the biopsy. You don't know. Melanoma can be very aggressive. If you are going to get a second opinion, work on doing that now. You do have time, but I wouldn't let this go.
As far as being out in the sun? Why certainly! You will have to understand that you are now at higher risk than the average person. You will need to compare sun block (they are NOT the same), and find one that works for you. You will need to learn how to apply it - most people do not use enough, or reapply as often as they should. You will also need to learn sun safety: when UV rays are strongest, covering up, wearing a hat, sun block. And learn to protect any children you may have - they, too, are at greater risk now.
Your life is not ending! By everything you have posted here, you have caught this really, really early. And with melanoma, the earlier you can diagnos this, the better the prognosis!
Chele60...Thank you for sharing your valuable information...which, I'm sure, came from alot of your own research...it was very much welcomed and appreciated...I also that you sooooo much for the optimism :-) I do have another question and I know it would depend upon many different factors and that is why I am asked how I feel...should it be and will it affect my health in the early stages? Also, if you don't mind me asking, when were you diagnosed, what treatment do you have, and how are you doing? Lori
In general, my philosophy is that a positive outlook is simply better to help the mind assist with dealing with stress, as well as assist the body through illness. Does this mean that I believe serious illness, such as cancer, can be cured with laughs and giggles? Absolutely not! But stress, worry, and a downbeat attitude can sometimes place undo pressure on the body which already attempting to heal itself. However, all people are individual and must be in their own place at their own time. No one can be critical of another's journey, especially as relates a very serious illness. It really is very uniquely individual.
When I was first diagnosed with melanoma, I went directly against my doctor's suggestion and began doing searches on the internet. What I found there truly scared me. I came to a point where I had to take some serious steps back and truly do some serious research and not just read stories. I did eventually come to a place where I understood, mostly, melanoma as it affected me, and - most importantly - how to wage battle against it. That made me feel more powerful and more in control. As you are probably aware, receiving that initial diagnosis of "cancer" makes you feel completely vulnerable and powerless, and that is truly the scary part. Or so I discovered for me.
I was diagnosed with melanoma in 2007. I noticed what I thought was a mole growing on my left in November 2006. It had none of the characteristerics of melanoma (the "ABCDE's"), so I just figured it was another mole. However, it grew faster than any other mole I'd had, and it seemed darker. In Dec '07 it actually sort of "popped up" which was a little wierd. What I hadn't realized at the time was the center was slightly blue with a faintly white center. I hadn't realized this was a symptom of melanoma at the time, and I wasn't even certain I was seeing it.
In Jan '07 I went in my annual physical, and I brought it to my doctor's attention. We arranged for me to come back in Feb to have it removed. Neither of us were concerned. She was going to remove just as a precaution. I had a shave biopsy on Feb 21, and my doctor contacted me on Feb 23 with the news that the biopsy had tested positive for melanoma. I remember that hit me like a ton of bricks!
On Mar 5, I was consulting with a surgeon, and on Mar 27 I was in surgery for my wide excision. I was officially staged at IB, Breslow level .7. It has been almost 2 years, and I'm NED (no evidence of disease). I see my dermatologist every 3 months for a skin check, in addition to doing my own monthly skin checks. (Most melanomas are self-discovered, BTW) I take sun safety very seriously - I've learned a LOT about sun screens (I keep them EVERYWHERE!), and have quite the collection of hats. My 5 year rate of survival is in the mid- 90 percentile, and my 10 year rate of survival is 87% - and I intend on being in that 87%! I veiw my diagnosis as a sort of wake up call, as do many who have been diagnosed with cancer. Through internet blogs I have "met" far too many individuals who have lost their battle with melanoma. They were far too young, and left young children without moms and dads. I am determined now to live and enjoy life - it far too precious and far too short, and I am just so thankful that, for whatever reason, I was spared a much more serious diagnosis than some.
I realize I'm babbling now, and I do apologize for that! But, in so many ways, life is just so much more beautiful now!
Hi Chele60...thank you for sharing your experience and knowledge with me...it is very much appreciated...And yes I agree life is precious...I have always known that...and yet with a diagnosis of melanoma it has become even more precious...it all seems so surreal...Chele60, I will keep you in my prayers...Were you a sun bather? You mentioned you have done your homework on the different sunscreens...can you pass some of that on to me? I, too, plan on being a 5 year survivor...you had mentioned you knew others that had lost their battle...were there any that were in our early stages? Also, I have read about diet and how it plays a role with cancer...such as refined sugar feed cancer...have you any information on that? Also, that cancer feeds on a high acidic body...What I do know is that the cancer has to be cut out...I have to use sun block and clothing and hats to protect myself...watch my diet...reduce stress...I also read that cancer thrives in a person with a compromised immune system...I myself have a compromised immune system and a very high acidic body...I have been working a lifetime to correct both...I hope it is enough...Chele60 have you found any cancer organization that is good for support? You mentioned going the dermatologist to be checked...does your insurance cover? I hope to hear from you soon.
Both Chele and Oleander were such great help to me when my melanoma was first discovered on Dec 26th of 2008, Merry Christmas to me!
I had no idea what melanoma was! I was staged at what my surgeon called a 'T1" i believe. I'm not looking forward to having to see a dermatologist to look for more of these ugly moles, and I've yet to fill out all of the paperwork, so I come to this board to remind myself that this IS serious, and I need to take this seriously.
No. I was never a sun worshipper. I HATE the sun. But I have VERY fair skin, (I'm Irish) and burn easily. I received all of my burns either swimming, or some event outside. I've been covering myself up the last couple of years, so I'm still amazed that I got this type of cancer. Please stay in touch on this board because I need to chat with you and everyone else who understands what we are going through.
I am an Irish girl too......do not forget there are many ways to get skin cancers....Mine is where the sun don't shine!!
You must go and be checked. Even with seeing my Oncologist Gyne on 3/4 my Dermatologist says I must come in every 3 months for a head to toe skin check up from him since I have 2 blood relatives with melanoma. I know my dad and brother both did so well because all of theirs were caught early.
By the way my dad's Melanoma's were never a mole, always a lavender color and itched.
My brother's was a mole he had all of his life. It really never changed. Small, flat and dark. A very Smart doctor did not like the way it looked and wanted it off.
I also had something come up suddenly on my rt thigh last year. Came up overnight almost... light grey and it got big fast so I asked to have it off. It was pretty deep and it came back a Stucco Keratosis..path said normally found in elderly men.. I am neither elderly or male. I was like HUH?"
My dad was a red head and he was militant about staying out of the sun and using sunscreen, wore hats and long sleeves. He had a total of 6 melanomas, several Squamous cells and basal cells.......Now we know the Bowen's disease was probably cause. Envoirmental exposure of some type.
Forgive me if I repeat myself.....Please get checked out often.
I myself am doing as much natural food as possible...taking ESSIAC tea concentrate and Vit D 2000 IU's a day. Trying to let go of worries.......
Make sure to take care of yourself.....Do not let work or anyone interfere with your checkups........
Hi Orleander...Thank you for responding to my post...I do have so much to learn...I'm sorry that melanoma runs in your family...I'm not sure if it runs in my family only that my dad was told he had a cancerous mole and it was removed and my brother just last month was told he had basal and squamous cells on his head...he has yet to have them removed...And thank you for the encouragement about frequent check ups...I am not looking into a cancer diet...as I learn I will pass it on to you...I am not familiar with ESSIAC tea...please let me know how I can benefit from it....In rebard to the Vitamin D 2000...I take that all ready as much natural food as possible...taking ESSIAC tea concentrate and Vit D 2000...and I will remember you words not to worry...because I no stress can bring down your immune system. I am doing my best to take care of myself...but I am meeting with some difficulties getting off from work...I do not want to tell my employer at this time...with the economy as bad as it is...and the down sizing/lay offs...I didn't want to give them a reason to let me go...have any of you run into any problems with your work? Thanks again for you time, your kind words, and your friendship. :-)
Hi Rockford2! I agree both Chele and Oleander have been a great help to me since I was just diagnosed with Malignant Melonoma...I'm sorry you have melanoma and you are a newbee just like me...and I am sensing a little anger about this situation...and I am as well...I know finding out at Christmas time was disheartening...could it not be blessing that you found it and you caught it in time...I think the worse would be to find it too late...As much as I do not want to go through the checkups....I am looking at it as if all I need to do is go to the dermatologist every three months and I will be melanoma free...you bet I am going to do it...we both have been blessed that we are not far gone...And let us keep it that way Rockford 2...As I learn more about melanoma I will be glad to share it with you...do keep it touch...I too need all of your support at this time...And I do plan to take it serious because my life depends upon it. I want to thank all of you for here for me :-). Sparkle
I have been very worried about cut backs at work. I am the breadwinner in the family and have a huge overhead with 2 in college. Yes I worry. Would not want to start a new job with Doctor appts and perhaps treatments ahead of me. Not to mention loss of insurance. Will telling them put your head on the chopping block? Depends on what kind of company you work for. I work for a private company and they do exactly what they want. I went ahead and put it out there...I hope I did the right thing. Time will tell.
Do you tell them or do you not? It has been mentioned to me that if you tell them they really cannot let you go and have to provide time off for you for Doctor appointments. But I believe it depends on what State you live in maybe and what type of business you work for. Our HR Dept always does what is best for the Company not the employees.
You need to check your State's labor laws about it. Terrible that we even have to worry about this.....but we do......
I was diagnosed with melanoma 1.1mm thickness back in September 08. I was pretty scared once finding out but realized that even though it was past the 1.0mm thickness, I still had a small risk of it spreading to my lymph nodes.
I had surgery to remove the melanoma (leaving a pretty sweet scar) and they did a Sentinel Node Biopsy (SNB) taking out 4 lymph nodes which all came out clean. I've since had a sonogram followup with everything still checking out normal. .25mm thickness is still really early and should be nothing to worry about. Being overly cautious is never a bad thing but don't stress.
Hi Dallas and welcome! So even though most of us had this melanoma caught early, is this really something that we need to continue to worry about? If they cut out the cancer, then why do we need to continuously worry about this?
This is what I don't understand. What I keep thinking is that the surgeon, doctors, and specialists just don't want to be sued IF something should show up, so they constantly monitor us. I, for one, would not sue, but there are some people...
So with thoughts like that, I keep thinking that if *I* should see something weird again, I'll just mention the mole to my regular doctor. I just know that by seeing a dermatoligist, she/he will have me worrying for every single mole I have on my body, and trust me, there is too many to count.
I can understand the need to question if those of us who have caught melanoma early the need for continuous followup by doctors and dermatologists. What is the need? If the entire cancer was removed, why the need to keep going back? Why not just go on with life? It would be so much easier, wouldn't it?
Well, allow me to share just one story with you? The name of this woman is Charli Wemkea Blue (yes, that is her real name!) When she was 17 years old melanoma was discovered on her left shoulder. She had a WLE (wide excision), and the doctors stated everything was removed. She continued with followup visits, but life gets busy, you know?
This young woman graduated from high school and attended college in northern California, where she eventually met her husband. They married in 2001, and ended up settling down in Seattle. They were young, newly married, just beginning, and so very happy. In 2006 they discovered Wemkea was pregnant - life was good, life was complete.
Wemekea gave birth to her daughter, Josslyn, in January 2007 - a healthy, beautiful girl. The parents were happy and proud! But, Wemkea told doctors she was experiencing pain in her lower back. The doctor determined it was probably a kidney infection, and placed her on antibiotics. The pain didn't ease up. There were other suggestions, other ideas, but the pain was consistent. Finally, in February, the doctors had Wemkea undergo an MRI. The news came back: Wemkea's lower back was riddled with tumors. It was eventually determined in March these tumors were melanoma - and inoperable. By the end of March/beginning of April doctors were telling Wemkea and her husband to take care of business, and they doubted she would be alive past May.
Charli Wemkea Blue died June 3, 2007. She was 27 years old. She left behind a grieving husband, and a 5 month old daughter. I never met this woman, I never corresponded with her. I've read her husband's word and felt the grief in his words. Her beauty shined through the web site he created in her memorium. I recall the heights of his happiness when she made past May, and the depths of his grief when she passed away.
On the web site he created, he speaks to seeking regular check ups with dermatologists and sun safety and education.
This woman's story is just one. It's heartbreaking - it had me in tears a year and a half ago. But there are others just like Wemkea - people diagnosed with melanoma in the earliest stages, who choose not to follow through with doctors. Life gets busy, they'll do it later, the cancer was all cut out already, excuse after excuse. I cannot tell you how many stories there are of people who are just like Wemkea!
The thing to keep in mind with melanoma? If it comes back, it doesn't always come back as another mole - that's the weird thing. I've talked to a lot of people who had early stage melanoma, and 10 years later melanoma showed up as stage III or IV. This why regular check ups are vital! Knowing and understanding one's body is so important! And sun safety is a key part of this.
I know when I make my appointments with my dermatologist, I'd rather be doing something else. And doing those monthly skin checks in the bathroom, well, those aren't exactly fun, either. But then I think of Wemkea (or Rebecca or Shannon or Marcus or ...) and I do these things if for not other reason, then for their memory and to not let melanoma win.
My Dad's 6 melanoma's were never moles......they were flat lavender itchy spots. His last one was a Stage 4 on his earlobe and it was a dark purple spot. His first age 58 and his last age 93.......so you see you can live a long healthy life. All caught early with the exception of the last one. I lost him last March.
My Dad had melanoma's, basal and Squamous Cell carcinoma and Bowen's disease. Now I have Bowens and Squamous Cell Carcinoma. It sucks.
My brother's melanoma was a mole he had all of his life that had that look....dark and irregular. Luckily all caught early. My brother is now in his 3rd year post melanoma. He has no insurance but never misses a 3 month check up.
Please get your checkups....... it is just an office visit. Not a difficult thing to do..... Please do it. I have been lax also about this but no more.
Hey I am not big on the Medical community either but I am big on these check ups now.........