› Forums › General Melanoma Community › Experience with Conflicting/Downgraded Biopsy?
- This topic has 12 replies, 3 voices, and was last updated 6 years, 4 months ago by
Grateful77.
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- August 27, 2019 at 1:08 am
I had a suspicious lesion removed at the end of July (shave biopsy).The initial pathology report came back as invasive melanoma Breslow Depth at least 0.8 without ulceration (Stage 1(b)). I was preparing for a WLE and SLNB at the end of this week with a team of melanoma specialists. These melanoma specialists have their own dermapathologists review all slides before surgery to confirm the diagnosis.
To my surprise, the second opinion from these dermapathologists came back Melanoma in Situ– NOT invasive melanoma.
I’m at THRILLED that this could actually be melanoma in situ but also pretty flummoxed as to how one pathologist can see invasive melanoma at 0.8 and another melanoma in situ.
Does anyone have experience with the “downgrading” of a diagnosis to this degree? Do I need a third opinion on the biopsy slides?
Thank you in advance for your thoughts.
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- August 27, 2019 at 1:26 am
In general, discordance rate among pathologists is surprisingly high, if I recall correctly something 10-15% of cases. If it were me, I would have asked about this from the melanoma specialists themselves. I am sure they have experience with this and that is why they review slides. Frankly, with them being melanoma specialists, the odds are that their pathologist is probably more accurate than some general pathologist. I guess it boils down whether you trust them or not. Do you think that there is somebody even better within your reach to treat melanoma? If so you may go to them. But I wouldn’t go from a melanoma specialist to a general oncologist or a dermatologist.-
- August 27, 2019 at 1:37 am
Ellie– I appreciate your reply. If I asked for a third opinion, it would definitely be from another melanoma specialist in the region (not from a generalist).
Also, I *did* ask the melanoma specialists about the results. They told be biopsy results change in 1 in 5 cases when their dermapathologists review them. He did not/could not opine as to how often they’re downgraded rather than upgraded. I guess I was just hoping someone on this forum may have had a similar experience and sought more than two opinions on original biopsy slides. -
- August 27, 2019 at 2:31 am
Grateful, I did not have that but i think that it is up to you. If this is something you would like to pursue, I think that you should go for it. But have a plan in place of what you would do if the third place gets you the third diagnosis 😉
Check this out: https://www.google.com/amp/s/medicalxpress.com/news/2017-06-accuracy-melanoma.amp
It says that accuracy of pathology diagnosis of early stage melanoma my be less than 50%, as well as on the population level, 8% of cases would have been over interpreted and 9% underinterpreted.
Sad stats, indeed. If you feel strongly about it, I guess there is no harm in sending it for a 3rd opinion from another mel specialist. At least if this comes back as in situ, you will probably be very much relieved. -
- August 27, 2019 at 10:36 am
Ellie- I really appreciate you taking the time to reply– and the article you posted is so helpful. Thank you!I’m an organ transplant recipient, and that complicates matters a bit because I’m ineligible for immunotherapy and because my body doesn’t “fight” cancer the way it’s supposed to. The drugs I take for my transplant likely caused this melanoma in the first place.
Bottom line: I’d hate to forgo the SLNB based on the in situ diagnosis only to find out later that the melanoma WAS invasive. I’m very lucky to live in DC near many strong melanoma centers, and I guess there’s no harm in having another team look at the slides. I’ll keep you posted on how it goes.
Also, I’ve been “creeping” around this board ever since my diagnosis. I’m so inspired by the stories here and by this sense of community. Thanks especially to all of you who take time to comfort the newly diagnosed. I’m keeping you all close in my heart and wishing you many healthy days.
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- August 27, 2019 at 4:14 pm
Grateful, in this case I think that you definitely need to seek 3rd opinion. Especially since 0.8mm invasive melanoma and melanoma in situ are pretty far apart on the spectrum. Not that far of course, but not negligible. On the downside, that would delay your surgery. Can you have a surgery while you wait on the 3rd opinion, and have SLND later on if needed? If you do have a surgery, I would have wanted them to take 1cm margins in any case, not 0.5cm as they do for in situ. But that shouldn’t be a big deal unless your melanoma is in a cosmetically sensitive area.Wishing you the best and keep us posted!
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- August 27, 2019 at 4:50 pm
Having wide margin done without SLND is not the recommended way to proceed if third set of eyes (referral to another pathologist) agreed with first set of eyes as to pathology evaluation. Now, if the second reading is correct and it is “in situ ” then margins are all you need done. Did they give any explanation for the big difference in pathology evaluation??? -
- August 28, 2019 at 2:40 pm
Just by way of update, my slides are being sent to Northwestern for FISH. I think the results of that will provide some clarity/comfort about “what lies beneath.”
We’re definitely looking at Melanoma in Situ, but there’s disagreement among the pathologists about the deep margins (Pathology 1 said invasive melanoma, Pathology 2 said MELTUMP likely benign).Just for context the lesion itself was amelanotic and didn’t present at all like melanoma. I had two derms decline to biopsy it, but I insisted on biopsy when my spidey sense kept tingling.
And I’m so glad I did.Thanks again to Ed & Ellie for weighing in here. I’ll let you know how it turns out.
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- September 7, 2019 at 12:36 pm
Ed & Ellie,Just wanted to circle back here–
I had a WLE with 0.5 cm margins last week– pathology came back with clear margins and no evidence of invasive melanoma. (Obviously good news).In the meantime, however, Northwestern agreed with the original invasive melanoma diagnosis so I need to go back for another WLE. Wishing this information had come sooner and/or we’d taken 1 cm margins in the first instance. But I’m glad to have some clarity about the diagnosis.
Thanks again for your guidance.
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- September 7, 2019 at 6:26 pm
Now, I am confused!!! You now have a second independent pathology report of 0.8 mm depth for original biopsy so no longer considered in situ, is that correct??? -
- September 7, 2019 at 6:54 pm
Have they at least come to some agreement on total depth??? Your first post said stage 1b and waiting on WLE and SLND, why would they do WLE before third pathology report was completed??? What stage have they given you??? -
- September 7, 2019 at 8:56 pm
So many question marks 😉The third pathology was supposed to take several weeks, and the consensus was the lesion shouldn’t stay on that long (I’d had a shave biopsy) and should be excised with conservative “in situ” margins.
The second pathology came from a very reputable melanoma center, and he was 90% confident it was in situ, so I was comfortable moving forward with that suggestion.The “agreement” now on total depth is Maximum 0.8. (b/c no residual invasive melanoma in WLE).
The first pathology staged me as 1b, the second in situ, and the third 1a.It’s all ok– I’m obviously not thrilled about needing a second excision, but these things happen. Doctors are only human, and we make the best decision we can with the information we have.
I think if we’d known the third pathology would come in less than a week after the WLE, we all would have made different decisions.
But here we are. -
- September 7, 2019 at 9:12 pm
(Also, I’m teasing about the question marks. I appreciate you checking in on me :))
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