› Forums › Cutaneous Melanoma Community › Dermatologist Lied or Mislead Me and I’m Bitter– Help Me See the Light
- This topic has 14 replies, 7 voices, and was last updated 7 years, 5 months ago by
hellokitty1.
- Post
-
- October 24, 2017 at 2:26 pm
A year ago, at age 35, I get a call from my dermatologist. He had finally agreed to remove a mole from my upper arm that I'd had since childhood but that had always looked horrible to me. He said, "I don't want you to freak out. You DO NOT have melanoma. But the mole on your arm is severly atypical."
A week later, I talk to the surgeon, wondering how much skin he'll have to remove because it's severly atypical and that sound serious to me. He looks at the report and says, "It's only moderately severe. This is nothing to worry about." He removes the same margin as he does for a moderate mole he's removing at the same time.
A week later, I ask for my report. It says:
"Atypical Intraepidermal Melanocytic Proliferation
Multiple step levels sections are examined and demonstrate an atypical intraepidermal melanocytic proliferation. Within the epidermis, there are moderately to severely atypical melanocytes scattered along the dermal-epidermal junction. Mart-1 staining highlights these melanocytes, as well as focal crowding. The differential diagnosis for these findings include an atypical lentigo or evolving aytpical junctional nevus. This process extends close to the margins of the sections examinned, and re-excision is recommended. This case has been reviewed by the Dematophatholgy Consensus Conference."
I google the term atypical intraepidermal melanocytic proliferation and am surprised to see it come up a melanoma in situ.
I call the dermatologist. Is he sure this isn't a malanoma in situ? Because I read this is a term used when they aren't sure, or want to give the patient the benefit of doubt because of young age.
Dermatologist says, "No, no, absolutely not. I know what terms the pathologists use when they're borderline or trying to decide, and I didn't see any of that. This is not a melanoma in situ. It wasn't even a close call."
A year later I switch to a new dermatologist. He says it's a melanoma in situ. Says nothing can be done about removal done a year ago.
I broke down in his office and haven't stopped crying. If I knew it was melanoma, I would stopped bc pills right away because of the estrogen instead of taking them for a full extra year! If I knew it was melanoma, I wouldn't have planned to try for a baby this last July! If I knew it was melanoma, I would have suggested I come in more than the once a year my old derm recommended! If I knew it was melanoma, I would have been less loosy goosy with sun care!
I was told it was moderately severe. Nothing to worry about. We don't know which abnormal moles turn to melanoma and which don't, so we remove them to be safe. That's all it is. Don't worry. Don't question. You've never had melanoma.
I am PISSED.
- Replies
-
-
- October 24, 2017 at 2:49 pm
That's unacceptable. I'm not a fan of legal stuff, but some of these doctors need to put their attitude in check, if only to stop them from being so flippant in the future. We pay a lot for their expertise, and should expect results. I would think about getting a lawyer.
-
- October 24, 2017 at 2:57 pm
My only goal in life has been to live long and happy with my husband (13 years so far!). If I can't have that, nothing else is really going to make me feel better. It's not worth it to sue.
-
- October 24, 2017 at 4:22 pm
Sorry this happened anonymous. Not sure going legal would do much anyways other than cost you money. Even IF and it's a big and unlikely IF you progressed you'd have a hard time proving it was from his negligent actions. You might however be inclined to summarize your case and send it to the state medical board so they can determine if he fulfilled his duties as a medical provider. Sounds like to me he didn't.
I'm hoping you are able to vent and put this behind you so you can get back to your goal in life.
-
- October 24, 2017 at 5:45 pm
Question. Did the new dermatologist just read the report or did you have the slides sent to him and he reread the slides? The terminology in the report says atypical, not melanoma in situ. Intraepidermal does apply to insitu but it also applies to atypical moles too! Melanocytes in the epidermis. That applies to most every mole. So by itself, it doesn't mean anything. The degree of atypia is where you are going to start differentiating in situ from atypical. So how is this new derm just saying it is in situ? I think you are getting things out of order here. Your previous derm and pathologist said atypical. So the new derm just intuitively says in situ? I'm not following this at all.
This is what you can do. You can ask for the slides from the previous pathology lab and have them sent to a different lab and reread. You need someone to reread the actual pathology slides, not just reinterpret the report. Otherwise, the new derms opinion is just speculation. He can't know more than the original pathologist who wrote the report. I honestly think you (and the new derm) are jumping to conclusions unless he truly had the slides reread.
As for BC and having a child, even an in situ shouldn't/wouldn't stop you from having children. As for sun safety, if you aren't careful even after having an atypical moles, then that's a problem. You should ALWAYS be careful, not just after the horse it out of the barn. More important to be careful BEFORE you are diagnosed, not after.
-
- October 24, 2017 at 7:04 pm
No one outside the UPENN pathology lab has looked at the slides. All decisions have been made on the pathology report alone. My new derm is requesting all my slides to have on hand, but I'm not sure if he's going to reevaluate the one in question because he sees it as a closed issue. This mole was biopsied a year ago and extracted. What could even be done now? My understanding is I have to live with the margins taken by the original surgeon.
The words focal crowding were significant to my new derm. He says that means insitu. He's a pathologist himself and was trained by his father, an instructor of dermatology at UPENN, so I do trust his judgement.
I do practice sun safety. But hats and long sleeves are uncomfortable in the summer, and it's hard to avoid being outside from 10-4 when you live in the middle of nowhere and every errand run takes hours, and, yeah, I'm going to be more vigilant now.
I'm not going to report this doctor. I think that's extreme, especially because I haven't had the chance to talk to him yet. Mistakes can happen and doctors can disagree.
-
- October 24, 2017 at 10:17 pm
So here is my take. UPENN has an outstanding melanoma program along with outstanding pathologists. They deal in melanoma A LOT. And if their pathologist doesn't think it is in situ, I personally would be going along with them. Almost all pathology is reviewed by at least one other pathologist when you get to bigger institutions. Even with the additional term (which I haven't actually seen on many in situ reports and I've read a lot of them) – I think your derm is still reading into it when he isn't looking at the slides and is contracticting the diagnosis by trained dermatopathologists at a major melanoma center. If he thinks it is that big a deal, there is no reason he couldn't go in and take additional margins now. But if you haven't had any regrowth, there really isn't a need. Pathology is an art as well as a science and reading slides does imply some interpretation. But your current derm is not reading the slides but only interpreting text and that raises a red flag to me. I don't know how you can contradict a diagnosis based on what you interpret from someone elses writeup. Have the slides re-read at another MAJOR melanoma center and then you'll have a better idea. I think it is irresponsible of your derm to contradict the diagnosis without actually seeing the slides. That's my take. Your mileage may vary.
-
- October 24, 2017 at 11:05 pm
My new derm says "Atypical Intraepidermal Melanocytic Proliferation" IS an insitu grading. So there's no need to say insitu on the report because that's what the term Atypical Intraepidermal Melanocytic Proliferation means.
I'm having a hard time now trusting what I'm being told. That mole was regressing. Not growing at all in size, but instead it started to look like it was molting. That's not indicated in the report at all. Now I start to wonder if it was actually a 1A melanoma and the regression was just missed. It says there was a dispute between lentigo (it sort of looked like an inkspot lentigo) and evolving junctional nevus. Well, the only way it was evolving was regressing, and I think they missed it.
I'm going to talk about having the slide rechecked. Thank you.
-
- October 24, 2017 at 7:00 pm
I can understand your anger, I was misdiagnosed and, well, that didn’t work out so well for me. BUT, everything Janner said is true and I wouldn’t jump to conclusions and get angry quite yet. Say that you did have in situ, and had it removed, that would still never be any reason to stop you from taking BC or getting pregnant. In situ melanomas have no access to blood and lymphatic channels so they have no way of spreading. I have never stopped taking BC through my melanoma journey, my oncologist definitley wants me to stay on it through treatment, and I plan on having kids in a few years.-
- October 24, 2017 at 7:19 pm
The kids thing turned out to be moot because it turns out I have other problems I didn't know about at the time. I got news about that hours before this new derm told me it was insitu, so lots of tough emotions in the last 24 hours! I'm definitely rooting for you, though! I don't know the limitations on adoption for health problems. My new derm said they avoid calling insitus institus so you won't get denied life insurance. That seems… odd… to me.
It is encouraging that your oncologist has no problems with the BC because now I have to stay on them for ovarian cysts.
The insitu or severe mole or whatever was removed, you're right. Thank the good Lord. But it wasn't re-extracted with 5mm margins, which would make me feel more comfortable. It was, however, removed completely in the biopsy and the extraction was just extra. I take comfort in that.
-
- October 25, 2017 at 8:09 am
Hi – first of all, calm down! Please, I know this is a shock but let's look at this rationally. Fortunately for you, this guy has:
https://www.ncbi.nlm.nih.gov/pubmed/27598440
So bottom line: your AIMP (Atypical Intraepidermal Melanocytic Proliferation) has a 4.2% chance of being diagnostically changed on review (as in, changed from AIMP to melanoma). Now, of that tiny 4.2%, the vast majority (85%) are melanoma in situ, stage 0, no potential to spread, no metastatic potential. So really, the highest of high likelihoods for you is:
– this is AIMP and not melanoma (95.8% chance of this)
-and, on the off chance it is a melanoma, it's the most benign kind with no metastatic potentail (85%)
I, personally, question your new doctor. You had an expert team diagnose AIMP. He and he alone is adamant that AIMP=melanoma, when the link above shows that is clearly not the case. The expert panel – who I would back if I were a betting person – say:
it's AIMP, and
on the off chance they are wrong, their differential (e.g. second preference) diagnosis is atypical lentigo or evolving aytpical junctional nevus
Either way, it's a wake up call to be careful with your skin and go for skin checks. But I personally am not 100% sure about your new derm.
-
- October 25, 2017 at 4:33 pm
Wow, thank you for taking the time to type that all out and explain it to me!
The second preference diagnosis. Is atypical lentigo or evolving atypical junctional nevus then melanoma? I don't know what either of those terms mean. I'm trying to figure out if "on the off chance they are wrong" means for me, are those things better or worse then the AIMP they ruled it as?
The new derm is a family friend. I hadn't been going to him up to this point because his office is an hour from my house. I do tend to trust him and he was very sure of his dagnosis.
I've had dozens of moles biopsied and 5 extracted, all but one on my head, all ruled moderate. I'm worried that some of those are AIMPs, but my old derm has never let me look at my other pathology reports and doesn't return my calls.
I just want to be ok and be sure everything was removed within standard care. I know I'm stressing, but I think that's understandable when you get somoene telling you "hey, it was cancer all along!"
-
- October 26, 2017 at 12:12 am
Hi Ano, im Mike & i have stage 4 Melanoma, diag in 2008 {was 3b up till recently, with 6 surgeries since} & now its in my lungs. I had a simular experience this past go round, last Nov 2016 i had a biopsy {a shave} to my shin area wich came back nothing to worry about, and id have to pull out my paperwork, it may have been what yours was called. He offered to perform a procedure to remove it & i was like no, im ok if its NOT gunna kill me, im tired of surgeries by this point!!…anyways, my "thingy" grew like a wart, crusty the whole shabang. After he shaved it & tested it, and after the good news, a few months or so went by & it grew back faster then ever! i was like what the hell? so i figured lets do that "procedure" he was talkin about, came in, he was amazed that it grew back the way it did, he shaved/biopsied "again", 3 days later he calls, and its Melanoma & its "NOT" related to any other past tumors that iv ever had to date. Another words, if i hadnt had my first diagnosis in 2008 with my 1st tumor, this particular one woud have been a 1st diagnosis 2017. I was pissed! so all this time passed since last year for the possibility of all that "Travel Time" it didnt set up in my lymphnodes this time "again" thank god, but, is this the "coprate" that is now in my Lungs? ill know here in a few days, im doing my CT Guided Biopsy in my lung tommorow matter of fact {10/26/17}. A miss diagnosis happens more then you think, just remember, our cancer is TRICKY! its like no other! it hides behind trees, it lurks behind walls! & even disquises itself as other abnormalities…good luck Ano!! were here for ya!..Melanoma Mike
-
- October 26, 2017 at 8:56 pm
I'm sorry to hear your story, MelanomaMike.
The original dermatologist stands by his original assessment 100% and sounded very displeased in his voicemail. My new derm does excisional biopsies and I'm much more comfortable with that. No more shaves for me. From here on out, I think I'm in good hands, but goodness only knows what will come of my past removals.
I'll keep you in my thoughts, Mike.
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.