February 20, 2014

Folks, Get Your Second or Third Opinions

About a year and a half ago, my dermatologist who originally diagnosed my suspected "melanoma in situ" said to me that we probably treated this "more aggressively than we needed to."  Meaning that the skin they removed from my cheek was not actually melanoma in situ, though those cells could've had the potential to turn into that in the future. And a skin graft probably was not necessary (though she didn't use those words--she insinuated). I felt a sinking feeling, a regretful sensation.

Since my dermatologist had sent my biopsy to her colleague in 2009 for a second opinion, the confirmation from a second source was enough to help me make the decision to go ahead with the skin graft that I'd been strongly advised by my highly trained, well-schooled dermatologist to undergo. But everything surrounding that diagnosis felt uncertain to me, which is why I researched the types of stains that the pathology labs use and found that some read differently and it's not always a "sure thing" that it's a melanoma cell. I never felt that I could get enough information prior to my graft surgery. I couldn't find what I needed to be certain. I was searching for information and felt extremely under-educated about it, so I went blindly into the skin graft because I had been advised this was what I needed because the doctor sincerely expressed how serious (and deadly) melanoma can be. Scared the heck out of me.

I sat quietly on this for more than a year and didn't mention it here because I'll never know exactly why they went ahead and decided to cut so much of skin away if they weren't absolutely sure. I don't know why I didn't press further to be absolutely certain I needed it done. The doctor said to me that these cells weren't melanoma in situ "yet" but could potentially turn into that in ten years. This doctor seems like a very sincere, nice human being. Regrettably, I now have a big scar that probably wasn't needed, and if the brown spot on my face had been removed without taking such a large surrounding margin, I'd still have a scar but wouldn't have to be concerned about the spot any more (nor its potential to become cancer cells). In other words, I probably would have had it removed, but not with all the good, healthy skin surrounding the spot. The remaining scar would have been much smaller and I wouldn't have gone through such an emotional ordeal.

I didn't want to write about it here because I thought it may deter people from going to their dermatologists. That could cause some very serious cancers to be missed! 

But I have to write about it today because I recently heard from one of my blog readers who has kept in touch with me via email since 2010. Unbelievably, she too has learned that a similar strange scenario occurred in her situation. Her new dermatologist reviewed the paperwork in her case and said she had not had melanoma in situ either! But she underwent the graft surgery thinking it was necessary at the time, just like I did.

So some diaganoses of "skin cancers" are not that at all, and apparently some people have had skin grafts unnecessarily. I only know of myself and one other person, so I don't know how widespread this is.

In hindsight, I think MOHS surgery would have been better in my case. Since my original spot was continuing to get larger with time, it is certainly something that should have been removed. I would not have just left it there to grow and worsen.  

Nevertheless, I still went through it and I still have a scar. So I'm leaving the blog as it was written. I was led to believe I had melanoma in situ, so the emotions I experienced in 2009 still apply to those people who have it. And all the photos I've posted show how a skin graft looks, for those who unfortunately have to go to that extreme to remove abnormal cells. Cells, which I hope, have been accurately confirmed by more than one opinion.

Thanks for letting me vent.



38 comments:

  1. My dear… I have followed you on and off since my first experience with skin cancer in 2011. I just Googled to get more information on this beast, as I was completely in the dark, and your blog popped up. I am reaching out now because of this particular post. If you ever need someone to talk to, I am here. Although my skin cancer did not require a skin graft, it changed my life forever. If you have an e-mail address I can write you there. This is, of course, if you would like to communicate. If not, I would totally understand. I wish you peace and harmony and remember… no regrets. Yes, knowledge is power but sometimes we make choices because of fear and trust. I believe that is exactly what you did. Thanks for listening. Be well.

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    1. Thanks very much Cynthia. You're exactly right, did it because of fear and trust.

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  2. Six months after my Moh's surgery for a squamos cell carcinoma on my nose, I visited my derm for another spot slightly above my original growth. The doctor said she was almost certain it was not skin cancer but removed it with a simple office procedure (no stitches needed) and had it biopsied anyway. Two weeks later, I got a call from the office to schedule another Moh's surgery. I asked if it was a basal cell or squamos cell carcinoma and got a vague answer. I almost scheduled the surgery but asked instead to come back in to talk to the doctor. She was honest with me and said that I didn't need surgery - that it wasn't skin cancer just something "atypical" and that she was perfectly comfortable "watching it." I was furious that I had been called to schedule Moh's unnecessarily but was so relieved that I didn't say anything to the doctor. While I believe my derm will always be honest with me, I feel that the doctor who owns the practice has turned it into a "Moh's Factory." So, yes, always get a second opinion and ask to see exactly what the biopsy results say. By the way, it is 2 1/2 years later and my "atypical" growth has not returned.

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    1. Very interesting! Thank you Kathy. I'm glad you asked to talk to the doctor about it first. In hindsight, I should have done that. One thing I've learned is that I will always proceed more carefully from now on with any diagnosis from a medical practice.

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  3. Good morning. I appreciate your blog! My story is just beginning to unfold and I hope to be able to put your wisdom into use. I will meet with a surgeon soon to consult about an in situ stage 0 melanoma on my cheek. I'd like to follow your advice about second/third opinions. Is a phone call to my dermatologist to request the report be sent for a second opinion the first thing that you suggest doing? And to confirm that my spot isn't "suspected melanoma" but is indeed melanoma? Thanks again for this blog. It is the most information I've been able to find online.

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    1. Hi Jennie,
      Thank you for writing. Having your dermatologist request that your actual skin biopsy sample get checked by a different pathology lab would be a good idea. And if you really wanted to be thorough (which would incur more expense due to another office visit and possible second biopsy), seeing a completely different dermatologist yourself for a different opinion/perspective is what I wished I'd done. I think many people don't do that, understandably, because of the expense and inconvenience. And I remember thinking, "well if I get a conflicting opinion from a second doctor would I get yet another different opinion from a third?" So it's hard to know whose opinion to trust. Unless, of course, all were in agreement.

      Sorry you're going through this. Glad my blog has been informative.

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  4. Just found your blog. First of all, I hope you know how beautiful you are - really. It's the kindness in your eyes and your sweet smile. Secondly, thank you for your bravery in sharing your healing results and your compassion in wanting to educate others.

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    1. Marcia,
      Thank you for your kind note. I appreciate it!

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  5. I'm so glad to discover your blog - I have a large freckle on my cheek and a nearby 'echo' freckle - so atypical for me and I'm wanting to see a doctor to get it assessed. If I do go to a dermatologist who orders a biopsy of sorts how do I know that sample can be seen by more than one clinic? don't they send medical samples for bio-hazard disposal afterwards? I want to walk into this informed and I know there are many practices who see dollar signs when someone walks in with something vague. Thanks!

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    1. The biopsies taken by my dermatologist are frozen and retained in some sort of filing system for a period of time so they can be looked at by more than one lab.

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  6. Hi, I have a skingraft scar on my face, and three years on it is looking better
    but the white skin is hard to cover. I was wondering if anyone had found
    a good waterproof concealer to hide their scars.
    Thank you Ann

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    1. I haven't used waterproof concealer so I'm sorry I can't recommend anything. Maybe someone else will see your comment and will have a suggestion. I usually wear foundation with sunscreen in it though. Sometimes I apply this on my graft scar when I'm at the beach: Neutrogena Healthy Skin Compact Makeup with Helioplex SPF 55 (broad spectrum sunscreen). It stays on when I go in the water. Thank you for writing.

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    2. I do not use a concealer, but my every day, go-to-work sunscreen does help with the appearance of the graft scar. EltaMD Physical UV Broad Spectrum 41 is lightly tinted. It is easy to apply, helps with the appearance of the scar area, 40 min water protection and has no harsh chemicals. http://eltamd.com/product/uv-physicalbroad-spectrum-spf-41/

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  7. About three years ago I went to my Dermatologist and had them look at a dark freckle on my face. He told me to watch it and come back if it changed. A month ago I went back and they did a biopsy. I really just let time slip away and did not realize it had been 3 years, and it really had not changed much. I had lot's of red on my cheek but I put that off as rosacea. Well I had invasive melanoma. My dermatologist referred me to a plastic surgeon who specialized in melanoma and he did a thorough exam and I just felt like two doctors had told me I needed to get it done. Mohs was not an option because of the depth. I found your site while doing research just a few days before my surgery. My skin graft is in the exact same place as yours. It is about the size of a silver dollar. I had the same flower thing that the Dr. had to sew to my face, but mine looked like one of those old pink rollers. It was there for 12 days. After they sent what they took off my face to have it tested, it came back with margins of in-situ. So now I have been referred to a skin cancer specialist to get the rest taken off. It has been very stressful. Everything happened so fast. Your site really helped me feel better about everything that was going on. I know how you felt at the time, you just leave it to the professionals and trust that they are doing the right thing. I just wish it was not on my face. When I look at your picture it makes me feel a little better knowing that it will not always look as bad as it does today. Thank you for sharing your story. It did give me comfort when I needed it.

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    1. You are going through a lot and I'm sorry to hear you have to get more taken off. Yes even a little freckle can be something worrisome, and I wish more people were aware of their skin changes and how serious they can be. Many times I had the same thought -- somehow it would be easier if it weren't on the face. I am glad you took the time to share what you're going through and I'm pleased that my blog offered you some comfort! Thank you and best of luck.

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  8. Hello,

    I wish you the best and hopefully it all goes away and you feel the best you can...

    I just wanted to share something I will be doing soon called "Enerjet" for a different kind of scarring. Just though that sharing wont hurt. Look into it if it can help with the appearance so you would feel even better.

    Bless you

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  9. You have been such an inspiration for me throughout my process of having skin cancer removed from my face and a skin graft as well. Your blog is the only day by day realistic "what to expect" of the situation. I have gone through the same emotions as you and I'm glad to know that I'm not as vain as I feel some days. I know, after reading your blog, that this too shall pass and scars will heal. Thank you!!!!

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  10. I am just starting the whole process of what you went through, except the Plastic surgeon and myself decided to go with the flap instead of the graft. I have been diagnosed with Invasive Malignant Melanoma. I am taking daily photos to check the progress and because of your bravery posting your photos, I may do the same too. It's difficult to find online anything about anyone giving an honest story about what happened to them and actually showing. I am sorry that you went through what turned out to be "unnecessary" surgery...I know what it feels like - at the time you just want "it" out and so many times I was tempted to just take a box cutter and cut it out myself. I couldn't get it out fast enough. In those moments, it feels like one has to move faster than the cancer....and because one doesn't know how fast it's moving....there doesn't seem the time to check with another professional. Thanks for your story and I have referred my readers back to you. Thanks so much.

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    1. I appreciate this very much. Well stated.

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  11. I am walking this road right. I am on day 2 post cosmetic surgery with skin graft. I went in for MOHS surgery to remove a place on my nose that was the size of a pencil eraser. The doctor insured me that he would be conservative until he checked to see if there were abnormal cells. His initial cut was the size of a quarter. I just laid there, tears streaming down my face, it was completely unnecessary for him to do that, he was much too aggressive. The pathology report came back and it was a cyst at the bottom of a pore. I am concerned with my skin graft, I bumped it pretty hard the first night during my sleep. I have very little pain and this is disconcerting to me for some reason it makes me concerned that maybe the graft site has been damaged. I called the surgeons office but they are not liberal with information, you have to pull it out of them. Were you ever concerned about the graft not taking? Did you have pain in your graft site? The donor site is painful. I see the surgeon in 4 days to have the bolster removed. His instructions to me were to take a pain pill before I got there. Do you remember if there was much pain removing the bolster? Thank you for allowing us into your life that we might benefit.

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    1. How upsetting. I thought the goal of MOHS was to take conservative amounts of tissue and check for abnormal cells before taking more tissue. Definitely would NOT have expected a quarter size to be taken. I'm sorry!

      I was concerned about the graft not taking because the edges didn't seem to be healing correctly, but everything turned out ok with time. I didn't feel any pain at the graft site, nor the donor site. I was surprised at that also, as I expected pain. I never took the pain pills. Removing the bolster wasn't bad--it was a relief actually, but removing sutures did hurt/pinch. So generally, not really a painful experience except emotionally.

      I never bumped mine, but I did laugh at a joke while I still had the bolster on, and I think that pulled some of the graft in a direction it shouldn't have gone. That side of the graft didn't heal as well.

      Thank you for sharing your story too.

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    2. Thank you for answering me. I haven't seen my bolster, he instructed me not to touch it until I see him next week. I will have had the bolster for 6 days at that point. I was under the impression he was going to remove it then. Did you keep yours longer than a week?

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    3. My bolster was in place for 8 days and I didn't touch it, though I did look at it (and took photos of it - see January 2010 http://quietchi.blogspot.com/2010_01_01_archive.html). The day the doctor removed the bolster, I was so relieved to have it finally taken off. The remaining sutures were removed at the doctor's office about two days after the bolster was removed.

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  12. 2 and a half weeks out from my facial skin graft.... has been an experience!! They took skin from behind my ear...which has made it pin back slightly which was not pleasant..but it has stopped paining now...lol... I was googling makeup and skin grafts...and you were the first I clicked on....you are looking beautiful...I do feel going out in public at this stage I little bit daunting....but I did for the first time yesterday...being on the face you cant hide...but there are worse things....so onwards towards healing....

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    1. Thank you. Originally they were going to take skin from behind my ear as well, but for some reason he changed his mind the morning of surgery. Definitely will get easier to go out in public as time progresses. Best to you as you heal.

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  13. Hi, me again (from 20.6.12 and 21.12.12). I too have now been told neither of my procedures were necessary (one skin graft and one flap, both on my face) and the areas in question were not cancerous just inflamed!! Devastated doesn't adequately describe how I felt when i was told, but then came the anger, which I am still dealing with. My trust in doctors has completely evaporated and I am reminded of their screw up every day when I look in the mirror. I don't feel I can ever forgive them, despite their numerous apologies :(

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    1. Wow. Awful! I'm so sorry! This truly concerns me. My husband just said "there's a lawsuit there." It brings up my anger again reading what you wrote.

      I, too, distrust doctors now. Paranoid about their intentions -- are they making these "errors" to make money, meet their quota?

      I haven't returned to a dermatologist in over a year. Basically because I'm afraid to.

      Thank you for writing. It's disturbing to know that other people have been misdiagnosed and now live with scars on their faces because of human error..

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  14. Many thanks for your willingness to share your experiences, thoughts and photos. Your calm nature is impressive. The questions you've raised are worth serious consideration.

    I have had several basal and squamous cell carcinomas removed. They were bothersome spots, and I was happy to be rid of them. At my last derm appointment I had a biopsy of a problem area we've been watching for a few years, because it felt like it was going into my eye. It was another bcc and I was referred to a MOHs surgeon. Everything that I read about MOHs sounded pretty positive, and a friend who'd had it recently was healing well, so I wasn't too worried. Expected stitches, some bruising and a bandaid. Well, I was totally unprepared. The surgeon immediately told me that I'd probably need a skin graft. She also decided that a nearby spot, which had never concerned me, should be removed (it turned out to be another scc). After a long day with four gruesome rounds of cuts to remove the bcc, she sent me for blood work and an ekg, and set me up with an ocular surgeon to reconstruct everything the next day.

    The first thing the eye surgeon told me was that I would not look the way I did before the surgery. He was right about that. He pulled skin flaps and did a full thickness graft with skin from my collarbone to patch up my face. Catheters were inserted in the tear ducts to keep them from scarring over. Six weeks post op, the suture lines and graft are healing. Makeup helps a little. My eye does not (and most likely will never) open fully and there is still a lot of tearing. Though blurry, I can see. The catheters are annoying. They came loose after a week and had to be replaced under anesthetic. It is not clear how long they must remain. The surgeon mentioned a glass tube that may be required at some point, which I really hope I won't need. My face is asymmetrical. I call it Picasso-esque. Maybe it will improve with time. Never was a Picasso fan.

    All things considered, I am fortunate. I have a very supportive family and some understanding friends. I am retired, so I don't have to worry about my job, and we don't have financial worries. There are many bigger things: people at war, terrorism, violence, sick children, losing loved ones. Still, it is difficult. I believe that my doctors are skilled and did their jobs well, but the trauma has been physically and emotionally daunting. Isn't there a less extreme way to treat a bcc? I would carefully weigh every available opinion and option before going through this again.

    Best wishes to all who are living with these issues.

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    1. Thank you so much for writing. My chest actually tightened while I read it. Seems so extreme to go through this much trauma to remove a place on the skin...changing our faces. Your last paragraph sums it up so well.

      The doctors have no idea what it feels like to experience such a facial alteration and walk around like that for months/years afterward. I hope research is being done to find new ways to treat skin cancers on the face without leaving us so emotionally strained.

      Thanks again.

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    2. http://www.nytimes.com/2014/01/19/health/patients-costs-skyrocket-specialists-incomes-soar.html

      This hits home on many levels. It's not just about the money.
      Different doctors, different opinions. Even the pathology doesn't seem to be definite.
      Difficult to know when surgery, or even a biopsy, recommended for every little thing, is truly needed.
      I believe that the epidemic is twofold as suggested in the excerpt below.


      The specialists point to an epidemic, noting there are two million to four million skin cancers diagnosed in the United States each year, with a huge increase in basal cell carcinomas, the type Ms. Little had, which usually do not metastasize. (A small fraction of the cancers are melanomas, a far more serious condition.) But, said Dr. Cary Gross, a cancer epidemiologist at Yale University Medical School, “The real question is: Is there a true epidemic or is there an epidemic of biopsies and treatments that are not needed? I think the answer is both.”

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    3. Excellent article! This is exactly what I suspected. Thank you so much for sharing this with me. I am becoming more skeptical about some doctors. Even this paragraph from the article--case in point "not really needed:"
      "Critics say the robust revenues from doing procedures has led to overuse — colonoscopies by gastroenterologists, steroid injections by pain specialists and M.R.I. scans by orthopedists, to name a few. Dr. Thomas Balestreri, a recently retired anesthesiologist from Washington State, said in an interview that to increase revenue, some fellow specialists used an ultrasound to guide placement of a nerve block when it was not really needed."

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  15. I wish I had found your blog before I had Mohs surgery on my nose - it would have shown me what to expect. I was so frustrated at the lack of information that I, like you, took pictures every day (for 2 months) then every month for what is now almost 2 years. I figured I will post them when the scar has finally healed fully, without discolouration, but now I understand that this may never happen.
    I was never much of a sun-worshipper, and I don't burn easily, so this all came as quite a shock to me. The spot was definitely basal cell carcinoma, so it was correct to have it taken off, but having the scar right in the centre of my face feels so EXTREME. One consolation is seeing you and your scar, and noting that what I see first about you is your beautiful nose (so envious!) and your lovely eyes. To be honest, I hardly see your scar, but if you are like me, I'm sure it seems glaring to you. I can assure you that it is not, and I take comfort from that for my own continued healing.
    Thank you so much for your honesty and bravery in posting. All the best to you, Tara

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    1. Tara,
      Thank you so much for the compliments! I'm sorry you had to experience something similar, and I understand what you mean by EXTREME. To me, it absolutely seemed glaring for a few years, but finally after 5 years feels less so. Thank you for taking the time to write, and best to you as well.

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  16. I don't know if you still read the comments.. Anyway, I wanted to thank you for this blog.
    3 years ago, I got a scar infection that ruined my upper lip and the area between my eyebrows. To sum up, I wanted to be definitely shaved in both area so I went to see a doctor that burned me because the laser he used on me was too powerful. The following months were awful. I stoped loving my face, looking people in the eyes, I was afraid to meet people that didn't know what happen. It was always like: Oh my god! what did you do??? Even my brother told me that my face was ruined forever. I cried a lot, I felt lonely, I spent A LOT of money in creams, "miracle" products, doctors... I realised that there was only one solution after seing a famous surgeon : TIME. This is how I learn one thing I ignored: Patience. I also learned how to accept myself entirely. I guess this experience wasn't random. I see it as a kind of lesson from life and god, a way to become less superficial and to accept people how they are, myself first.

    And, through this long way to acceptance, I was reading your blog. And it gave me strenght. First, I was relieved not to be the only one to have scar on the face. Then, I understood it wasn't a shame and that I could show my face to the world, like you do.
    And the improvement of your scar in its size, texture and colour encouraged me. I also liked your little tips concerning sun protection ....Thanks to you I learned that I could still live, hang out with friends, meet new people, go to work even if I had big red scars and holes.

    Today my scars are really better. The upper lip one has now the colour of my skin, so you must be very close to see it. The one on the eyebrow is still a hole but a lot of people tell me that it gives me a little something special. Now they are part of me and I don't remember my face before, as if I had always had them. Yours is now very very discrete and I wouldn't have noticed it if I hadn't read the blog!

    Time makes his work. Lucky us!
    I just would like to say for those who are looking for solutions and answers: do not worry, time makes things better. You must practice a lot of massages on your scar, trying to "break" the fiber, moisturize it a lot. Essential oils are very good . I had a very good product called Kelocote for the scar that was like a red bump but I live in France, I don't know if you can find it abroad. You can also see a skin doctor, some lasers improve it but I haven't tested it. Finally, NEVER touch a wound and don't put anything on it.

    Thank you for this blog, hope you feel fine with the scar . the best to you! (excuse me for my english)

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  17. Yes I do still read comments and I am extremely touched by yours! Thank you so much for writing about your experience and for letting me know that my blog has been of help to you. This means so much to me, and I'm grateful you took the time to tell me. You've been through a tough time with your scars! I absolutely agree, TIME has been helpful in the acceptance process. Thank you for all your lovely compliments. I appreciate it very much. Best to you.

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  18. Thank you for this note and your blog. I am 8 months pregnant and was recently diagnosed with a potential melanoma in situ. The actual diagnosis from the pathologist was that "he could not diagnose an invasive melanoma but remains worried about a melanoma in situ". This diagnosis was confirmed by a well known UCSF lab and is currently being under review at Duke University.

    From my conversations with doctors at Duke it is a common thing to treat melanomas in situ more aggressively than sometimes necessary in order to cover all the bases, or as they say just in case. In my case I am not that concerned and I prefer this approach given that my mole was located in the first web space between my big toe and the next toe on my foot. But I can understand how going in aggressively on a face or other visible and sensitive areas can be worrisome.

    If Duke results in my case come back confirming potential melanoma in situ I have decided to go forward with the excision that will be performed by a surgical oncologist. The good thing is that it will be done under local anesthesia which will not have effects on the baby.

    I have seen your recent pictures and you look amazing, regardless that the scar is still somewhat visible. Thank you again!

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    1. Thank you so much Ana! Having to go through this during pregnancy must be quite stressful. Your information is very helpful to me, even 7 years after the fact, to hear that doctors at Duke also tend to treat melanoma in situ more aggressively.

      I thank you for the compliment - you made my day!

      Good luck with your results, and all the best with your pregnancy & delivery.

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