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Medical Forum / Diseases and Disorders / Cancer / May 2008Pursue second opinion after three lab results (one of which differs)?
**Summary at the bottom in case you don't want to read the whole thing. When my father was diagnosed with prostate cancer a few months back, we asked his PCP about getting a referral for a second opinion. His reaction was (translated) "That's not a very good thing to do... like you don't trust your doctor." That infuriated me. With the risk of infection, bleeding, etc. that comes with biopsies, the fear that another biopsy would eat away at valuable treatment time and the doctor's reluctance to provide another referral, my father went ahead with treatment. Luckily, his surgeon/doctor (not the PCP) was very experienced and when asked about a second opinion, he indicated that he would be providing that second opinion. My father is doing fine now, done with all treatments except for occasional check-ups. A few days ago, I was devastated again. A small, pea-sized lump under the skin of my girlfriend's forearm was biopsied. Previous doctors indicated it was likely a benign cyst, a jelly excreted by strained muscles, etc. Perhaps because of her age (she's has years before she turns 30), no one seemed to believe it was anything but a nuisance. The surgeon sent the sample to the lab. The result came back positive for malignancy. Surprised by the results, the doctor asked the lab to test it again. The results now came back negative. Unable to provide clear-cut answers, he asked the lab to test it a third time. It came back positive again. He believes it's a sweat gland cancer. I'm not sure what to do. The doctor indicated that, regardless of its malignancy, another surgery would need to take place to remove any remnants of the tumor. My question is, should we be going to another doctor to remove the remaining tumor and have it sent to the lab as a second opinion? Could the multiple lab results already be considered "second opinions"? The current doctor already scheduled a surgery for the end of next week. That seems somewhat fast since my father went through a series of MRIs, bone scans, etc. before he was treated. Is this unusual? There doesn't seem to be much data on sweat gland cancer and I don't think the doctor is familiar with it. I'd like her to see an expert in the field, but I don't know if one exists. **Summary: 1. Girlfriend's biopsy were analyzed by the lab 3 times. It came back as: malignant, not malignant, malignant 2. Surgery to remove remaining tumor scheduled for next week. 3. No MRIs, bone scans, etc. have been done yet. 4. Should we get a second opinion from another doctor? Any advice would be helpful. Thanks. Tom <k9boy@hotmail.com> fell face-first on the keyboard. This was the result: news:52c85443-3771-46a2-8ccd- c813a2d026ea@d1g2000hsg.googlegroups.com: > **Summary at the bottom in case you don't want to read the whole > thing. [quoted text clipped - 42 lines] > > Any advice would be helpful. Thanks. Personally, if it were me, I'd go with the surgery to remove the tumour: Benign or not, I wouldn't want it in me. Let them test the removed tissue as your second/third opinion.  SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > A few days ago, I was devastated again. A small, pea-sized lump under > the skin of my girlfriend's forearm was biopsied. Previous doctors [quoted text clipped - 27 lines] > > Any advice would be helpful. Thanks. Few people need to rush into treatment decisions. Can you get her to one of the places mentioned here? http://www.emedicine.com/derm/topic630.htm If you can get (copies of) the lab reports to take with you, all the better. J > > A few days ago, I was devastated again. A small, pea-sized lump under > > the skin of my girlfriend's forearm was biopsied. Previous doctors [quoted text clipped - 33 lines] > better. > J Thank you for the article. Somewhat coincidental that you should ask if I can get her to one of the places mentioned, since those locations are in NYC. I live in NYC. I'm not sure how appropriate it is, but I'll try to contact a few of those authors. > **Summary at the bottom in case you don't want to read the whole > thing. [quoted text clipped - 42 lines] > > Any advice would be helpful. Thanks. Malignant with what? The pathology report should have said exactly what type malignancy they identified. The risk difference between a basal cell carcinoma and a melanoma are enormous. > > **Summary at the bottom in case you don't want to read the whole > > thing. [quoted text clipped - 49 lines] > The risk difference between a basal cell carcinoma and a melanoma are > enormous. I'm with you on this, but we haven't received a copy of the labs yet. We'll be visiting the doctor tomorrow. I'm hearing everything through my girlfriend, so I'm anxious to speak directly with the doctor. From what my girlfriend has indicated, the doctor doesn't seem all that familiar with the cancer. I'm not sure what this is based on and it makes me uneasy. The doctor is a surgeon that specializes in cancer, but I don't know if he's an oncologist. > [snipped] > > [quoted text clipped - 21 lines] > makes me uneasy. The doctor is a surgeon that specializes in cancer, > but I don't know if he's an oncologist. I wonder if they need more tissue in order to be definitive? How did things go yeserday, Tom? J > > [snipped] > [quoted text clipped - 25 lines] > How did things go yeserday, Tom? > J Thanks for asking. I have the reports, which identified the tumor as "adnexal carcinoma, not further classified". The "not further classified" part seems to stem from the uniqueness of the sample. I've included the pathologist's diagnosis and comments below. I was unable to respond sooner because we've been searching in vain for a doctor who specializes in this field. After visiting the surgeon who took the biopsy, he indicated that we should go back to my girlfriend's primary care physician to receive a referral to an oncologist. Back at the PCP's office, we were hoping to speak with the doctor for 2 minutes to see if she had any oncologists to refer us to. The assistants there, however, made us wait several hours before we spoke to the PCP. Then the PCP basically said, "I have no clue, so I can't provide any referrals. My brother is an oncologist, he'll find someone for you." Today, we went to the brother/oncologist, who spent 10 minutes with us reciting the lab report (incorrectly, at that) and said "I have no clue and can't do anything. Here's a photocopy of a doctor's directory. Please pay the co-pay." So, after 3 doctors, we still haven't found a doctor who can start ordering (or not order) MRIs, lymphatic tests, etc. and we're basically left to "looking through the yellow pages". If anyone can recommend a skin/sarcoma oncologist in the NYC area, I would greatly appreciate it. Due to the size of the tumor, the first surgeon did not recommend Moh's Micrographic Surgery, which is what's recommended in the link provided earlier in the "Eccrine Carcinoma" article. Report: Summary of Immunohistochemical Results Marker - Interpretation Epithelial differentiation: Pankeratin AE1/AE3 - Scattered positive cells Keratin CAM5.2 - Strong positive Keratin 34BE12 - Negative EMA - Positive CK7 - Positive CK20 - Few weak positive Clear cell sarcoma/melanoma of soft parts: S-100 - Positive, nuclear and cytoplasmic HMB-45 - Negative Epithelioid sarcoma: E-Cadherin - Rare clusters of positive cells CD34 - Negative Vimentin - Positive p63 - Negative TTF-1 - Negative "Thank you for referring slides of this subcutaneous mass in this young woman. This is a very challenging case and I have considered various possibilities including a metastatic lesion. However, based on the location and young age, I suspect we are dealing with an unusual adnexal lesion. It does not, in my opinion, fit the criteria for soft tissue myoepithelioma. Although it is cytokeratin and S-100 protein positive, it lacks SMA, calponin, p63 and GFAP. Hence, I would consider it an adnexal carcinoma of uncertain type..." > > > [snipped] > > [quoted text clipped - 50 lines] > which is what's recommended in the link provided earlier in the > "Eccrine Carcinoma" article. Hello, Well, I'm confused as well, but glad you ignored the Moh's idea. We don't usually mention names of doctors here. This website has one centre in NY ofr sarcoma http://www.sarcomacancer.org/ Memorial Sloan-Kettering Here's another http://www.med.nyu.edu/surgery/oncology/patients/sarcoma/ Sounds good to me. If you're really stuck at decisions, you might want to try contacting this doctor He's also a surgical oncologist Howard Kaufman, MD Vice Chairman of Surgical Oncology and Associate Director, Herbert Irving Comprehensive Cancer Center NewYork-Presbyterian/Columbia Associate Professor of Surgery, Columbia University College of Physicians hlk2003@columbia.edu (or call) - unsure if that email is still valid. I have no experience with any of them. My impression is that Sloan Memorial is expensive and "cadillac" care; but may not necessarily be better than the other one. I hope this helps and/or does not cost you a bunch more wasted co-pays. Keep in touch. J >> > [snipped] >> [quoted text clipped - 82 lines] > positive, it lacks SMA, calponin, p63 and GFAP. Hence, I would > consider it an adnexal carcinoma of uncertain type..." It just needs to be removed with an adequate margin. No need for MRIs and other tests > It just needs to be removed with an adequate margin. No need for MRIs and > other tests Figures you'd post something that makes sense! When I had lump on my arm, I was referred to a general surgeon. As he started to excise, we were both surprived at its appearance (honeycomb spongy texture) and depth. He just kept excising until he got the whole thing out. I wonder why her surgeon didn't do that to begin with. [rhetorical] da,da,dum,dee....I don't know. J > > > [snipped] > [quoted text clipped - 80 lines] > positive, it lacks SMA, calponin, p63 and GFAP. Hence, I would > consider it an adnexal carcinoma of uncertain type..." I finally got around to typing up (almost) the entire lab, in case anyone is interested. It shows that the pathologists don't fully agree on what this is. The first pathologist seems to believe it's "soft tissue myoepithelioma" while the second pathologist believes it's "adnexal carcinoma". In any case, lot's of medical terms in there which I'm not done looking up yet. Sigh... I wish I had followed the pre-med path in college now :-/ Lab report: http://homepages.nyu.edu/~tn282/labreport.html BTW, thanks for everyone's responses so far. > I finally got around to typing up (almost) the entire lab, in case > anyone is interested. It shows that the pathologists don't fully agree [quoted text clipped - 7 lines] > > BTW, thanks for everyone's responses so far. Hello Tom, I looked through it. Several are suggesting full excision with wide margins which is what Steph suggested. he's Asst Prof (surgery) at a well known University in BC Canada and a rad-onc and oncologst, for many years. Get it done. Ascertain what it was (note: past tense) later. J . |
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