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Procedure question

Procedure question

Posted By
Rdcpt28
9/8/2019 7:59am
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Replies: 14

Hi everyone! Brand new here, and this might be a bit of a lengthy post.

I went to the derm Aug 27 for a strange looking mole to get checked out. The PA did a shave biopsy (it’s on my upper abdomen) and found another suspicious one on my upper back so took that one too.

I got a call back one week later saying that the one on my abdomen was fine but I had to come back in to get the one one my back removed. I didn’t ask questions because she seemed really unsure (kept putting me on hold to decipher the report) and I didn’t really understand the terminology she was using. She scheduled my excision for October 18th so I was assuming this wasn’t a big deal since I could wait so long to come in.

She calls me back an hour later asking me to come in earlier but I declined because it was on a day I had a work event. I made sure that it was okay that I waited and she replied YES!! You’re fine!

She called me back the next day saying I needed to come in the following day to get this done so I agreed now slightly freaking out.

I go in my for excision and the Doc explains the spot is severely dysplastic and the next step would cancer so they need to take it out and get it to the lab and I may need to come back so they can take more out.

when I checked out I had received a copy of my procedure and it read that I had an excision of a malignant lesion done. I don’t have a copy of my path report but if they can code malignant lesion for the procedure doesn’t there have to be mention of actual cancer in the pathology report? If it was only dysplastic wouldn’t it be benign?

Now I’m nervous that the doc didn’t really give me all the info- should I be scared? Will I get some different news once the excision results come in?
I just need some reassurance because I think I’m panicking for no reason!

Thanks to all who took time to read this’

Hopeful19 - (9/8/2019 - 12:50pm)

I have been through this anxiety recently so I hope my experience will help you. I don’t know where you live but most states allow you to get your medical records. That being said, you may have to sign some papers to get them released but it’s worth the effort to do so. In my case, my second doctor released the pathology report to me in my online medical chart. I went to a more cosmetic dermatologist first and when I saw the pathology summary from them, I went to get a second opinion. at a dermatologist connected with a medical school. I don’t know if that is a possibility for you. You probably got a medical summary from your doctor. . Mine said. MALIGNANT MELANOMA in huge block letters then insitu which means it wasn’t invasive yet. So I thought I had plenty of time. The final biopsy result showed the snarky melanocytes were showing pagetoid movement and were very close to crossing the dermis. I had my surgery August 28. In conclusion, you do have a right to your records but you might have to push to get them. Make sure you are seeing a dermatologist surgeon who does
surgeries a lot and is current on any new treatments. I also know that I am not a histopathologist and I couldn’t truly understand the pathology report even with Wikipedia’s help! Also there is discussion about punch vs. shave biopsy so you may ask about that. I am still recovering but I am glad that I got a second opinion, went ahead with a bilobed Mohs surgery on my nose and I am recovering fairly well. I am glad I went with more of a true medical system so that if I needed more treatments tha I was already into the medical system.
I hope this helps. Good luck to you!

moving in that direction.

MelanomaMike - (9/8/2019 - 9:01pm)

Hello RDCPT28, Wow! Big scare for you outta left field huh?!! Can i ask, what did you mean to say here, i cut & pasted your actual sentense: "spot is severely dysplastic and the next step would cancer so they need to take it out""....unquote..I dont understand the "Next Step Would Cancer"? Sorry, just curious, did they say Melanoma at all? Just because your paperwork reads "Malignant" doesnt mean its Melanoma nesessarilly, malignant means Infectious, has "traveled" from one spot to another...
Hate to be blunt with ya, from HERE ON OUT please ASK QUESTIONS! dont get any surgerys, biopsys till you have a CLEARER picture of whats going on, dont get me wrong, oncologist, doctors & pathologists etc. can get "stumped" & scratch their heads like the rest of us but, now its up to us to really find
outt whats going on before a procedure, dont be afraid to ask questions, its your body...im hoping the pathology report from your surgery is ok, and to me, if it was a BIG DEAL, i think they would have done a WLE in the first place, your saying that "Their" saying, you might have to come back again to do another surgery for the rest of it? Thats fishy, but im no doctor! Please update us ok? Take care, and keep calm, it pays to stay calm...

Melanoma Will Not Beat Me or my MRF Family!
www.wespark.org
www.covvha.net

Rdcpt28 - (9/8/2019 - 9:20pm)

A little typo on my part! He said the next step after severely dysplastic would BE cancer. So I guess he meant if I let it go it would evolve in to cancer? He never brought up the word melanoma at all. I know I should have asked more but I figured if it was something serious to worry about I would have been told on the spot. I guess now comes the waiting game for the call but regardless of what the result is I will be asking for a copy of the full report!

MelanomaMike - (9/9/2019 - 1:11pm)

Hi RDCPT28, please let me clarify, my earlier post is out of love & caringness, the "Blunt" part, in my Melanoma "Journey" over the years, iv asked questions to my Oncologists, Derm Doc, and Onco Surgeon so i know whats going on with me and each procedure being performed on me, yes, mild "hick ups" will occure along the way, especially during Pathology reading (final determination) i even had an actual Melanoma tumor come back as something else!! Forget the name they called it, Non Cancerous skin Blobersaurus will call it haha.. it was an Ulcerated type, broke through my skin (right shin) they retested (another Shave Biopsy) it grew back again in 2 months!! This time Melanoma. So, i see how Hick ups can occure with pathology & for a doc not being able to give you the real scoop in certain situations, always stay on top of it!! Ok? And when they dont make sense or fail to "Dumb It Down" a bit so we can understand, theres a lot of help here at MRF!! We have a lot of experiance plus folks will find & load up a Web Links (of accurate news) that pertains to your situation...just lookin after ya, thats all...PLEASE keepvus posted!!.

Melanoma Will Not Beat Me or my MRF Family!
www.wespark.org
www.covvha.net

BillMFl - (9/8/2019 - 9:09pm)

I hate this whole situation for you. Your Derm said said you had a severely dysplastic lession but did not define what type? If it truely a melanoma the report should have stated so. Dysplastic is not benign. That term is often used to describe a lesion that has substantially abnormal cells that are not yet a clear stage of melanoma, basil cell or squamous cell cancer. A severely dysplastic lesion should be removed promptly. I am guessing that she took a second look at your path report and thought it would be best to get it out promptly. This is a resonable decision that is in your best interest. I am sure the path report described detail about the size, type and general appearance of the cells and their nuculie. Based on the limited info you have shared I think it would be wise to go back to her ASP but not to worry about being at great risk. Most Derms I know will freely give me a copy of my dx path report. It is your right as a patient under the freedom of information act. Ask for a copy when you back in and lots of us can help you understand the terminology.

Ellie_82 - (9/8/2019 - 10:31pm)

BillMFI, I want to respectfully disagree with your statement that "dysplastic is not benign". The most recent research does not support an association between cancer and dysplastic moles. Most dysplastic moles are indeed benign and will never progress to cancer. Of course if its severe dysplasia with some worrisome histologic features then it may progress to melanoma, but until it does, it is technically still benign. I just didnt want people who had dysplastic moles to read this and freak out for no reason, because most dysplastic nevi are benign.

BillMFl - (9/9/2019 - 10:18am)

You should review the definition of severe dysplasia. Benign tumor cells are almost always well differentiated and resemble their normal cells of origin. Severe dysplasia usually refers to cells that are abnormal in size, shape and odd and sometimes multiple nuclei. Not yet defined as a specific type of cancer but a severe dx usually calls for removal. Mild dysplasia often requires reasonably frequent checks by a Derm. Every six months in my case because of frequent progression to malignancy. Since this patient was unsure of the dx but the Derm wanted immediate excision, it seems reasonable that the Derm has a high concern about the results. No need to nit pick about the relatively wide range of dysplasia, but if Derm is pressing for immediate removal it is likely this lesion is not benign but possibly wildly undifferentiated (anaplastic). In my experience it is unusual for a Derm to make multiple requests for a patient to come back in immediately unless there is cause for concern. In this case, for this patient, they should follow their docs advice! As to the folks with more indolent dysplasia, frequent monitoring may be all that is required. No one can make an accurate definition of this patients condition with the little info provided. But the Derms sense of urgency speaks for itself. But thank you for pointing out that there is a wide variation between mild atypia and severe dysplasia. The former may never become malignant, while the later may be in the early stage of malignancy. My personal motto has always been when in doubt, have it out (2mms, close to 40 sqs and basil cell for me). Fortunately, at 77, my skin seems to have slowed way down just like the rest of my body, haha. I don't make any claim to technical expertise other than my own personal experience with multiple types of skin cancer, my surgery for prostate cancer, and my wifes double mastectemy for breast cancer (she is a surgical nurse who has seen just about everything over the years). Thank you for respectfully disagreeing with me. Mutual support is the primary purpose I try to focus on. There is plenty of room for debate over technical issues and should be handled gently on this board. I am after all just offering my own opinions which are only as good as my aging brain is performing on any given day. :)

Ellie_82 - (9/9/2019 - 4:15pm)

Hi Bill, I absolutely agree with you that if in doubt, cut it out. That is why I had my moderately atypical mole removed with 5mm margins when it came back (derm didn't recommend it but I insisted). I too absolutely agree that this patient should follow his docs advice and have it removed - the sooner, the better. I also agree that the diagnosis of dysplasia is so wide, as almost to the point of being meaningless. Most likely in this case, yes, there is enough suspicion for developing melanoma to treat it as a melanoma in situ. But in general, the "usual" dysplastic nevus (that most people have in mind when they mention dysplasia) is benign.

It is very likely that this patient has much more information in the pathology report than the doc has shared with him. As you've said, it is probably not a true dysplasia anymore, but rather a developing melanoma in situ caught early. Well, good for him to have caught it that early. Once it is removed with sufficient margins, he will likely never have to deal with this ever again!

Ellie_82 - (9/9/2019 - 4:34pm)

Here is an old post from this forum that I have found, that I think may describe a similar situation with the path report: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma...

In this case, it isn't just an atypia anymore and shouldn't be presented as such. I personally think that there should be a special term for such cases, maybe something like "developing melanoma in situ", or "pre-malignant melanoma in situ"? Otherwise this "atypical nevus" terminology gives unnecessary worry to folks who have nothing to worry about, and unjustified comfort to those who do. This is very confusing...

Ellie_82 - (9/8/2019 - 10:49pm)

Here is an article from a reputable journal to support my statement: https://www.aafp.org/afp/2015/0601/p762.html
The first sentence states that "atypical moles are benign pigmented lesions". Atypical is the same as dysplastic.

Ellie_82 - (9/8/2019 - 10:19pm)

Hi Rdcpt28, GET THE COPY OF YOUR PATHOLOGY REPORT. I put this in caps to emphasize how important it is. We can be speculating here all day long, but in the end, what is in your path report is the only thing that matters.

I've had abnormal moles removed. None of the reports stated melanoma or malignant. I do not know what they coded the procedure for and it doesn't matter. Your path report is the only thing that matters.

If I can speculate about your situation, I would say that sometimes pathologists cant really call it "melanoma", but they cant really be 100% sure that it isnt a developing melanoma, just very early. So they would say something like "severe dysplasia, melanoma cannot be excluded". Again, this would be clearly stated in your path report, so get a copy. Even if it's that, there is no reason to worry. Your doc probably is treating it as melanoma in situ, just to be on a safe side. As long as they get the appropriate margins, you should be good to go. Your odds for being cured are like 99+%. All the best to you my friend. If you do get that path report, please go back and share with us!

markmsn - (9/9/2019 - 2:16pm)

I was in your same situation about 8 months ago with my biopsy. They told me it was a benign atypical proliferation but the doctor that did the excision called it "melanoma in situ" The pathology states that "most consistent with an early/evolving melanoma in situ" Which you should know is NOT REPORTABLE to SEER cancer registry. So if truly severely atypical or evolving they should code it as ICD10 D48.x Which is benign and not needing to call it "cancer"

For cases diagnosed 2018 and later, early or evolving melanoma is not reportable.

Evolving melanoma (borderline evolving melanoma): Evolving melanoma are tumors of uncertain biologic behavior. Histological changes of borderline evolving melanoma are too subtle for a definitive diagnosis of melanoma in situ. The tumors may be described as "proliferation of atypical melanocytes confined to epidermal and adnexal epithelium," "atypical intraepidermal melanocytic proliferation, "atypical intraepidermal melanocytic hyperplasia"; or "severe melanocytic dysplasia." Not reportable.

Melanoma Solid Tumor Rules, 2018, page 3, https://seer.cancer.gov/tools/solidtumor/Melanoma_STM.pdf

BillMFl - (9/9/2019 - 6:40pm)

Haha. Pathologists have lots of fancy terminology. But the reality is a lot of suspicious lesions fall into a grey area and regardless of the technical distinctions most Derms take the practical decision to play it safe rather than to wait and see. Most of us know folks who had poor outcomes because of wait and see especially years ago when there was a casual attitude of " its only skin cancer". As a young adult in 1960 I had zero awareness of skin cancer, what it looked like, or that sun exposure was a risk factor. 20 years later there were enough chunks removed to make a mini me. There was little or no public info out there back when I was young and "invincible". Cheers to all the warriors out there who have it far worse than me!

Rdcpt28 - (9/11/2019 - 2:10pm)

Just wanted to update everyone!

Just got a call from the docs office and she informed me that the doctor wanted me know that the “Nevus was fully excised and no further treatment is needed”

I did not ask for a copy of anything and am choosing to let this go and trust the doc. These past few days have been extremely difficult for me -couldn’t eat or sleep or think about ANYTHING else! I am also a recovering alcoholic and this was definitely a test of my sobriety! I am at peace now knowing that anything harmful or potentially harmful is out of my body.

To everyone fighting this battle my thoughts and prayers are with you!!