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ANGRY! Second opinion?

ANGRY! Second opinion?

Posted By
slholmdahl
7/9/2019 8:20pm
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Replies: 8

I realize my problem is small in comparison to most of you, but I would appreciate some thoughts from anyone who wishes to comment.

Three years ago, I was diagnosed with a thin melanoma on my right anterior shoulder.  I was told by the doctor who did the biopsy that it was 0.20 mm deep, with a zero rate.  I was never given a copy of the  pathology report,.

After the WLE I was told the margins were clear, again never given a copy of the pathology.

I finally demanded that they give me copies of all pathology reports.  I am an attorney and it took lots of pushing to get them to respond and give me the pathology reports.

Diagnosis was  noted as thin melanoma 0.22 AT LEAST,  on the original pathology report.  The doctor did a shave biopsy and pathology noted it was transected at the base and peripherally.  Obviously the doctor made a big mistake!

The pathology after the Wide level excision, gave the diagnosis as Melanoma in Situ, I assuming the transected peripheral margin?  It does not clearly state that, a special note by the pathologist said no invasive melanoma was found.  Only atypical cells in the epidermis.
Also stated clear margins, and no melanoma found in deeper layers.

Would you get a second opinion?  I realize I'll never know the actual depth, but the WLE pathology said no invasive melanoma found, so it implies the base was transected probably at the margin of the original melanoma.

I'm angry, but I also want to be proactive. if there may be useful information gained.   SECOND OPINION?

The lawyer in me wants to go after this doctor, so she does not do anything like this to some one else.

I never went back to her and have a new dermatologist.  All has been fine the last three years.

I don't think about this much and I have continued living my life to the fullest.

Any thoughts you have are appreciated!

Bubbles - (7/10/2019 - 10:26am)

The horse is out of the barn. 3 years have passed. You are well. Your wide local excisions seems to report that the margins were clear of melanoma. The depth of your lesion would not have warranted additional care (like sentinel node biopsy) even if it had been completed and reported appropriately. Lessons learned - NEVER get a shave biopsy. ALWAYS get a copy of any reports and doctor visits. That is the legal right of every patient. Be vigilant with skin checks at a derm you trust. If you want to "go after this doc", work to make sure this DOESN'T happen to anyone else. Educate yourself and others about melanoma. Make sure that local schools in your area have and apply sunscreen to children. Help ban tanning beds. Set up a run to benefit melanoma patients at your local hospital. Bring sandwiches to cancer patients while they are getting therapy. Make an appointment with this doc and share your concerns that developed given your experience under their care...specifically in regard to failing to provide path reports and a punch or excisional biopsy....without the patient having to struggle to attain them. Bring data to them to support your case and basic standards of care. (There is PLENTY of it out there!) And, if you feel it is appropriate, you can always report the docs performance to your state medical board. Most of all - live, many melanoma patients can't. Teach - keep others from facing the things your have. Advocate - for the rights of patients everywhere - for access to appropriate health care and records of that care. I wish you my best. Celeste

slholmdahl - (7/10/2019 - 7:39pm)

Agreed, thank you for your response.

I have been asking for a copy of the  pathology report since it was verbally reported to me on July 7, 2016.

It took the threat of a subpoena and a law suit to get them,  The California Skin Institute claimed they only had physician summaries but not the pathology reports.

I guess what I was looking for was someone else to read the pathology reports and confirm my conclusions from them,
In my view they are a bit incomplete.  I did post them in their entirety in my previous post on on July 6, 2019.

I also have an autoimmune disease called psoriasis.  Treatment for psoriasis can be in conflict with those who have had melanoma because of the immunosuppression that occurs with these treatments.

Melanoma exists on a spectrum, in pathology it is almost always a judgment call.  The microscopic portion of the two pathology reports reads just like a pathology for atypical nevi.  I was looking for confirmation that perhaps a second opinion was in order given the reports.

I will of course follow up with my current dermatologist.  However, he is gone for three months, and after three years I am impatient to start the process if it is necessary.  Hence, the above request.

I will follow up with the California Skin Institute with all the resources in my  power to assure each of their biopsy patients is automatically sent a copy of their pathology reports.  

I did try to talk to  the original dermatologist.  Her legal counsel won't let her talk to me,  I have filed a complaint with the California Medical Board.

I live my life to fullest, and appreciate each day!

Thanks again,

Susan L. Nelson-Holmdahl
Attorney At law

Bubbles - (7/10/2019 - 8:00pm)

You often have to acquire lab and path reports from the lab/pathologist who did the work - rather than the derm or surgeon who sent in the specimen. Yes, most of us on this forum are well aware of the disparate nature of melanoma and the difficulty of gaining an accurate and complete diagnosis. You have to do what you feel is best in regard to your care. Given your path report follow up with a derm and watching your skin carefully is all that is needed at this point. However, should you ever need to think about such care, the reality is that many who have a wide variety of pre-existing immune related diseases ARE able to tolerate immunotherapy. Here is a link to a report on that topic with multiple links within: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/03/toler...
Hope that helps. C

Ellie_82 - (7/12/2019 - 12:46pm)

Bubbles,

in regards to your comment "never get shave biopsy", I've had more than a dozen moles biopsied over the years, at 3 different dermatology practices, and ALL of these were shave biopsies. They have those tiny blades and they just shave them off. I think I mentioned at one practice if they can do a punch biopsy, and she responded something like, shave is normally all that we do. So how do you not get a shave biopsy if it seems that it's the only thing they do around here?

In regards to your comment that the doc not always has pathology report, do you know what it depends on if they have or not? So far I've always been provided with a copy of all pathology reports (on my request), so I assumed that's the standard practice - every biopsy gets back the biopsy report. I am awaiting on the biopsy results now and I am a little anxious. If they don't have a biopsy report, how do I acquire one? I have no idea who actually did the biopsy.

Bubbles - (7/12/2019 - 2:43pm)

My "never get a shave biopsy" was that definitive for Sue, because she is clearly upset with the result that was rendered. So, for her, I think absolutely the best plan is not to allow herself to be put in that position. Now....for general purposes - in a perfect world a shave biopsy is NOT the BEST option for evaluating a skin lesion. Why? Because it can confuse the evaluation of depth of the lesion and it can require the patient to suffer an additional excision for say, a small atypical lesion that needs to be removed, that could have simply been removed via excisional biopsy in the first place. So, that is why excisional or punch sampling of a lesion is best. But, you are correct - shave biopsies are very typical in dermatology offices. And, for the most part, esp if the lesion is not melanoma they are not particularly problematic. Even when the lesion IS melanoma, appropriate evaluation can still be rendered despite the problems that a shave biopsy might present. As patients we can refuse certain services and require others. Now, not all offices will necessarily honor our requests, though many will, some grudgingly and some happily, when you explain your reasons. So it is a personal decision if that is a hill you are willing to fight for. You would have to accept that you might have to go to a different dermatologist if the one you are seeing won't do it. However, I think most would agree to a punch or excisional biopsy if you explained why you wanted it.

As to attaining path reports. The docs who send a bit of you off to pathology SHOULD give you a full and complete copy of your path report when they get it. It is clear in the patient's bill of rights that it is yours to have. However, there are occasionally circumstances in which you have to get the report from the pathologist (doc who actually reads the slides)/lab itself. No, we usually don't have control over who that is....as it is most often dictated by your derm or surgeon's choice or insurance. Still, you can ask where your doc is sending it. Additionally, you will probably get a bill from both the lab and pathologist. I've never had one miss this step!!! But, if your coverage is such that you do not, that lab/pathology service will show up on your EOB (explanation of benefits) from your insurance company.

Hope that helps. I know this is a confusing mess. So ask more questions if I've just increased your confusion! Fingers crossed for good results on your upcoming report. celeste

Ellie_82 - (7/12/2019 - 9:13pm)

Thanks a lot for your response, Celeste. This helps a lot. I guess you are right, for someone who either already had problems due to a shave biopsy or had melanoma, perhaps shave biopsy is not the best choice.

Also thanks for the tip regarding the pathology reports. If the dermatologist doesn't give me one (so far they always did, albeit on my request), I will be sure to research and contact a pathologist directly. Also I wanted to thank Sue for posting this. I can imagine that with the stress of melanoma diagnosis, no matter how early stage, the first impulse is always to get it treated ASAP. But if I ever get diagnosed with melanoma, now I know better to NOT take any steps until I see a pathology report myself. Thankfully in Sue's case it appears that the treatment plan was not affected, but the attitude of the dermatologist and their refusal to provide pathology reports is appalling. I can see how this could have created problems down the road if her melanoma was a bit thicker. In such cases, an ounce of prevention appears to be worth a pound of curse, so to speak!

slholmdahl - (7/14/2019 - 9:18pm)

Hi Ellie, I hope everything works out well for you! You asked some good questions and I think others will benefit from them.

My diagnosis was three years ago and it was taken care of promptly. Making it worse I was diagnosed two weeks before I was to leave for Italy for my son't wedding. I was able to get the WLE excision done by a different doctor and I did make the wedding with only a scar. Again, I hope things turn out well for you. The waiting is the worst!

Sue

slholmdahl - (7/14/2019 - 8:41pm)

Thank you very much for the informative discussion and clarifications. My pathology was not sent out, it was done in-house and it took a long time for them to tell me who performed the pathological examination.. The whole pathology report thing was very confusing and a real mess.! The original doctor refuses to talk to me because her malpractice attorney has told her not to. This was upsetting because it has taken so long to get it resolved.

Thanks again!