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Newly diagnosed, confused and scared

4215Garden
Posts: 11
Joined: Dec 2017

I am 66 years old and just received a diagnosis of melanoma in situ. I was pretty shocked. I only went to a dermatologist because a friend of mine told me that her son-in-law had recently died of melanoma. She strongly urged me to get a “base line” body scan because I’ve never had one. Little did I ever suspect that the doctor would find a small mole she didn’t like and decide to do a biopsy. The results came back stating that I have an “atypical intraepidermal melanocytic proliferation with features of regression, consistent with early melanoma in situ extending to the peripheral tissue edge.” It further stated that “although the changes are subtle, the degree of atypia is most consistent with early melanoma in situ. Pathologic stage: pTis. The report described an off-center brown lesion measuring 0.3 x 0.3cm. Does anyone actually know what this report is actually saying?

The doctor assured me that this melanoma was at an early stage, but she didn’t give me any more specific information and she’s leaving for the holidays. She told me to find a surgeon to remove a larger swath of skin but again, because of the holidays, I can’t get in to see anyone. I’m feeling rather helpless and anxious. I also feel worried that it doesn't look as though I'll be able to get this surgery as soon as I should because of this waiting time.

If anyone understands this report better than I do I’d very much appreciate hearing your thoughts. This is a hard way to go into the next holiday week. I’ve decided not to discuss this with anyone until I have a better handle on what it means.

 

Thanks so much.

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Hi,

   I can only offer up a little of my experience recently.  I too went for an annual derm appt.  I had a few new freckles that popped up and noticed one of them, which was very tiny, was multi-colored, and asymmetrical.  When I brought it to the doctors attention he said it needs to be biopsied. It took 2 1/2 weeks to get path report back as I live in a rural area. When it did come in, the doctor called me and said the pathology showed dyplastic nevus with severe atypia and was well on its way to a melanoma-thus needed to be re-excised.  He was leaving town on vacation for the next three weeks, so he scheduled me for surgery three weeks later.  I too was not happy that I had to wait to get this off my leg, but he assured me a couple of weeks would not make a difference. 

     You may wanna do some research and find a local dermatologist that specializes in melanoma.  Your doc should be able to recommend someone.

I hope all goes well for you and that others will chime in to assist you more.  Best of luck to you. 

4215Garden
Posts: 11
Joined: Dec 2017

Thank you so much for your reply. I now have a surgeon lined up but she can't book anything for a few weeks. Yes, the waiting is frustrating - you want this thing out! I'm impressed that you go for a yearly exam - very smart. This was my first ever so I have no idea how long this mole or as I guess it's called this "dyplastic nevus" was there. Hopefully, your diligence will pay off with a clean bill of health after your surgery. I did read that these melanoma in situ are slow growing on the surface - hopefully that will be positive for both of us. Keep me posted and again, thank you.

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Garden,

    I lost a cousin at a very young age from melanoma that she didn’t see on the back of her calf.  Sounds like yours may have been caught at a good time.  I’ll have to do some research on the in situ melanoma.  I started having annual checks about 4 years ago.  I am trying to be proactive and use sunscreen daily.  However, from what my dermatologist said, these areas popping up now are probably from years of sun exposure without use if sunscreen as a child. Because of this, I really press my son to keep sunscreen on my grandson.  I sure hope all goes well for you, and I’m glad you found a surgeon.  Hang in there, the wait is agonizing, but you’re at least under way now.  Prayers and well wishes :0)

4215Garden
Posts: 11
Joined: Dec 2017

It's so frustrating when I think back to my teen years when we used to do what we could do get a tan - even using reflectors to concentrate the rays! I wasn't a sun worshipper but I certainly remember peeling suntans and painful backs. For many years now I've avoided the sun but I have done my share of gardening, etc. The bottom line is that we'll never know exactly why this happened and if our particular melanoma's had to do with the sun.

Let's hope we're both in good shape and are able to put this behind us so that all that remains is more wisdom and good care of our skin. Hope you're enjoying the holidays and I look forward to hearing how you're doing. We'll both have to just hang tight until we get these damned things removed! 

Diana

PS Someone just told me about a relatively new technique for removing early melanomas using photodynamic therapy (PDT). We both have to ask our doctors about it.

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Garden,

    I must have been confusing in my original post.  I had to wait to get my dyplastic Nevis removed because doc was leaving for vacation, but I have already had it re-excised. Sorry for the confusion. I can hardly see the scar and it was done late October.  I have another area of concern but am dealing with breast biopsy first followed by colonoscopy for GI issues I am having.  My dermatologist asked that I return in six months for a recheck but sooner if anything new arises.  Which, of course it has.  I was surprised when he told me that once he removes one of these there‘s a good chance within six months there will be another of some sort.   I guess it’s all the sun damage or genetics catching up to us.  

It was not really painful just the pinch of the needle for numbing purposes.  It burned a tad after that wore off.  He did tell me to use auquphor on it - which I did several times a day.   I can tell you that was the least painful suture removal I’ve ever had, and I think it was due to keeping it very moisturized with the auquaphor.  I also think this helped with the scarring.  Check with your doc about this for their advice in your situation though.  Best of luck and I look forward to hearing how it goes.

Hope you have a blessed holiday :0)

4215Garden
Posts: 11
Joined: Dec 2017

Thank you so much for your very specific advice regarding the surgery. I will definitely keep it in mind. I'm still waiting to get an appointment because the recommended surgeon is away for the holidays. Just for your information, my dermatologist has told me that I need to come in every three months for the next two years. I'm wondering about your comment that more areas of concern will start showing up now that we've found one. Does your doctor feels that one site has nothing to do with another? When I think about getting more of the "melanoma in situ" it makes me feel there's some connection between them beyond that they all originated at the same time - in other words some kind of "spreading". It's more comforting to think that maybe those teen years of basking in the sun are all coming home to roost.

I was away for a few days for the holidays which was very nice. Hope you had a good holiday and let's hope we both have a good New Year with less health stress!

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Oh my gosh.  I sat and wrote a big response and the site tossed it before it posted.  

Well I will have to write it again lol.  I had a very peaceful Christmas.  Glad to hear yours was good as well.  I was lucky and found a dermatologist that happens to specialize in skin cancer, so anything that turns up abnormal can be handled by the same doc-which I really like. This also saves me from paying crazy copays, as he is in network with my insurance co, which is a double bonus :0)

    I have always heard that stressful events can trigger cancer in the body, and I certainly had a large dose of that in the months leading to my dermal findings; howeve, I grew up in Daytona Beach.   In those days we were all trying to outdo one another as far as tans, and slathering on Hawaian Tropic oil to bake under the rays.   I was never warned about the possible dangers involved.   I guess we will never really know.   

As far as me being on an every six months and you every three, that’s probably because you have melanoma in situ and I am only dyplastic Nevis with severe atypia.   

I hope you get your off real soon and have clear margins.   I know you will rest easier knowing it’s gone.

keep me posted and I will be praying for a quick resolution for you.  

God Bless

 

4215Garden
Posts: 11
Joined: Dec 2017

So glad you found a doctor that you can have confidence in - it sounds like you've found the best for your situation. As for stress, I've always been a little skeptical about the role of stress in disease. So many people have huge amounts of stress and are just fine. And in any case, I'm not sure you can do very much about it. 

It sounds like you have something very, very treatable. But what did you mean when you said the doctor told you to come in if you noticed something else and "of course you did". Did you have to have another biopsy? Now that can be stressful. 

We are in a unique club. Once you get this thing - even if it's supposedly minor - I suspect you will forever have it on your mind. At least I'm sure I will. But it is also very humanizing. And it certainly wakes you up to the preciousness of life if you've been taking your health for granted.

Enjoy the rest of the holiday season with lots of good cheer and especially good health!

God bless....

 

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Garden,

   I meant that I found another area of concern, but I haven’t addressed it yet because it’s on my left breast and I am going through some problems in that area too.   As soon as I get to the bottom of the breast issues I will go back in to dermatologist.  I am scheduled to go back in April anyway, so hopefully all will be settled before then.  The new area showed up out of nowhere and is irregular and multi colored.  It’s very tiny, yet wider in diameter then the dyplastic nevis was.  If it gets any larger before I get through the testing for breast I will go back to derm sooner than April.

   Yes, life is truly precious and I try to make the most of it each day.  

Blessings,

Fab

4215Garden
Posts: 11
Joined: Dec 2017

Sounds like you're on top of things. Best of luck with whatever's going on with your left breast. Take good care of yourself and let me know how you're doing.

I'm still anxiously awaiting a second slide analysis before I can have my surgery. Perhaps it will come in tomorrow. This particular cancer center (Sloane Kettering) won't let their doctors do any surgery until the center pathologists do their own analysis. Nerve-racking!

Best to you...

 

 

Shiraz61
Posts: 15
Joined: Dec 2017

Hi 4215Garden,

I had the same diagnosis of Melanoma in Situ November 9, on my left back shoulder.  It's the "best" Melanoma you can have, I've been told by a few doctors, as it means the Melanoma is contained all within the biopsied area, usually the top layer, no ulceration or any other indications of spread.  I was still terrified though and felt dread for the next several weeks as I waited for referrals and treatment.  I found it myself when I noticed a mole that was darker than usual and had an irregular border. I asked my doctor about it and she agreed it was worth checking out so she did a biopsy in her office. The report came back a week later as Melanoma, which was terrible news for me.  The worst was all the waiting for appointments and referrals.  Even though I got to see an Oncologist within 10 days and the Dermatologist a little over a week later, it felt like way too long and I was so worried that the wait would negatively effect my outcome.  My Oncologist was very positive and insisted I didn't need to panic but I still had doubts and worried. I think that's natural as it's still cancer and that's always terrifying. 

Anyway, a month after diagnosis I had a wide incision of the area where the biopsided mole was and the results a week later came back all clear. A huge relief!  During the body scan, my Dermatologist found another "iffy" mole on my back, the results of which said was a benign mole.  But a Basal Cell Carcinoma was found by my right ear at the same time and I'm getting Mohs Surgery for that in just over a week.  So it's not over yet for me.

I spent the first week after diagnosis terrified of the sun, and living in Florida, that's a tough situation to be in.  Then I got real and decided I just needed to be careful from now on.  Bought myself a few hats with wide brims and that cover the back of my neck and I wear sunscreen ALL the time now, not just whenever I feel like it.  I shopped around and found sunscreens that were nice on the skin and didn't feel like Elmer's Glue, making it easier to use all the time.  Look for Broad Spectrum sunscreens as well.  I've also bought some light long-sleeved tops for when I exercise outside.  I haven't liked sunbathing for years so that's no big deal for me but I definitely have to be way more Sun Smart now.

All the best to you.  The waiting is the worst of it, I found, as it seems to be for you.  But the "in Situ" is a positive. It means you got lucky and got fair warning.  Good luck.

 

 

4215Garden
Posts: 11
Joined: Dec 2017

Thank you so much for your kind reply. Yes, the waiting is the worst. The other day I was put on hold while the doctor's assistant checked to see if the pathologist had looked at my slide. (This will be the second look at my slide because the medical center I'm at requires that the slide be seen by their own pathologists before I can have the surgery) As I was waiting for the answer I found myself writing "The waiting is excruciating." As you say, we've been told we don't have anything to worry about, but this has given  me such great empathy for those people who are awaiting news that they realize can be devastating. Your stomach turns into a tight ball and you can hardly breathe.

Like you, I will be carefully watching any exposure to the sun. I'm living in New Jersey where we are now having a record long cold wave so I have a good excuse to only stay indoors!

Best of luck to us all, and hope we enjoy a good year with a minimum of stress - particularly in the health department!

 

 

4215Garden
Posts: 11
Joined: Dec 2017

I hope both you and Fab are doing well. I finally had my wider excision yesterday. It really seemed to take forever but I'm so glad it's out. Now I have to wait for the result and as we all know - the waiting is the hard part....except until it's not. As I mentioned above I needed to get a second biopsy before I could have the surgery. I made a mistake by reading that 2nd biopsy without a doctor to comment. It was much more detailed than the first (made me think you should get second opinions!) but it also made me nervous, as it seemed to indicate a more serious situation. It took a doctor explaining to me today that it was, in fact, essentially the same as the first report. Amazing how easy it is to drive yourself crazy!

Thanks for all of your support.

Shiraz61
Posts: 15
Joined: Dec 2017

Hey 4215Garden, glad to hear you had your wide excision. I sincerely hope the result comes back all clear like mine did.  The wait is stressful, I hope it's not too long.

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Hi Garden,

    Praying you get an all clear from your excision path report.  It took several days to get mine, but I live in a more rural area too.  Best of luck :0) You’re in my thoughts.  

4215Garden
Posts: 11
Joined: Dec 2017

Hello Dear Fab and Shiraz,

   I am happy to say that the results of my larger excision were good - all clear. I now have to get checked every 3 months and already have my appointment. I feel very humble and still a little too nervous to completely exhale. Fab, how are you doing with the breast issue? I hope all is well and the melanoma issues are at rest. Shiraz, I hope you're getting good news and good reports.

  Best to you....

Shiraz61
Posts: 15
Joined: Dec 2017

So happy to hear your wide excision results came back all clear, 4215Garden! Great news indeed. Yes, I've got to do the same as you - get checked every 3 months.  My first one is at the end of March.  I managed to exhale in relief but I do worry a bit once in a while.  Whenever I'm outside in the sun, it reminds me of my Melanoma and I'm a bit nervous being out there, even if I am covered up and wearing my hat.  I suppose I'll never totally relax and believe I'm 100% cured.  I'll always wonder if perhaps one tiny cancer cell went off somewhere, for a wander, and will make its presence known sometime in the future.  I hope not.

I had the Basal Cell Carcinoma removed last month. It took 3 layers before the margins were clear.  It's a surprisingly long incision but it's only slightly visible.  I had the stitches out 10 days ago.  That incision wound doesn't hurt but my Melanoma incision wound does still hurt if I lift anything, or bend and stretch.  Other than that, everything is good.  Hope it is for you too.

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Hi Garden,

I am so happy that you are doing well.  I am waiting for more imaging to be done but will hopefully all go well.   Hope you continue to do well.  Hugs, Fab

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