Has anyone been misdiagnosed?

I am so sorry to hear that you are having to go through this. The very first question I asked my oncologist is "Could there be a possibility this is a misdiagnosis?" - She said no which broke my heart. I hope you get a quick resolution because they sure put you through a lot if there was nothing

It makes sense at 19 years old that you don't have cancer but what a nightmare for you to have endured. It will be hard to be relieved about not having cancer while you get over this shock. I hope they get to the bottom of it. Take care

I think the fact that they have made these disclosures so far is positive. At 19, I would encourage you to enlist the aid of a trusted, experienced, advocate be it a relative, friend or professional. Something is not right here.

Hi Chloe3278:

I think you may be worried that the original pathology was actually incorrect and there was no DCIS there in the first place? It is possible to misdiagnose DCIS, because in some cases, it seems there can be some difficulty in distinguishing atypia from low grade DCIS. See for example, this paper:

Elmore (2015), "Diagnostic Concordance Among Pathologists Interpreting Breast Biopsy Specimens"

http://jamanetwork.com/journals/jama/fullarticle/2203798

You mentioned that in addition to the first pathology review, "3 other pathologists also confirmed the presence of DCIS" in the tissue samples obtained during the augmentation procedure. That consensus might tend to suggest that DCIS was present in the original tissues provided for pathology review. Nevertheless, please do not hesitate to seek a further opinion from a pathologist at an independent institution. For this purpose, many look for an NCI-designated cancer center if feasible (e.g., in-network): https://www.cancer.gov/research/nci-role/cancer-centers/find. Actual pathology slides are sent overnight and examined.

On the other hand, sometimes (although not very often), a small surgical biopsy (or even minimally-invasive core-needle biopsy) manages to remove all of the cancer that was present, and no further disease is found upon surgery. So another possibility might be that your original diagnosis was correct (DCIS was present), but that the first procedure removed all areas of disease. In another thread you mentioned that, "Plastic surgeon found lumps and decided to get tissues sent for a biopsy (This is not his job, yet he saved my life). I got the results back yesterday and got told i have noninvasive low grade DCIS." It sounds like this was not a minimally-invasive biopsy and this could potentially be a case in which the first procedure fortuitously got it all.

If DCIS was present, but they got it all in the first procedure (without realizing it), a recommendation for more surgery might still have been supported by the combined findings of all imaging and pathology. For example, sometimes if biopsy-proven disease is found in more than one place and/or if other imaging findings are suggestive of additional disease, a person could appropriately receive a recommendation for more surgery. Another possible reason for more surgery would have been positive or small surgical margins in the first procedure (i.e., the presence of DCIS at or very near the edge of the tissue samples examined, suggesting the presence of additional disease remaining in the breast). For a short explanation and illustration of margins, see this explanation of "margins" on the Main Site. It is possible that the recommendation you received may have been a sound recommendation based on the type of information available at the time, even if it turned out they were wrong. To explore this, if you seek a second opinion at an independent institution, you may also wish to provide copies of all imaging (mammography, ultrasound, MRI) and related written reports and request an independent review by a Radiologist and a Breast Surgeon.

I understand that genetic testing was planned, and if still appropriate, certain findings may ultimately support the treatment you received. Clinical guidelines recommend genetic counseling before any testing.

Hope you can get some clarity.

BarredOwl

Hi Chloe3278:

I forgot to suggest also obtaining an independent second opinion review of the slides from the mastectomy and sentinel node biopsy to see if the absence of disease can be independently confirmed. Lastly, re sample handing concerns, you may also wish to inquire with a second opinion team whether there are suitable methods of diagnostic specimen confirmation available (e.g., DNA-based methods), and if so, whether such testing may be something they would recommend in your situation.

BarredOwl

That is good news re the testing for BRCA1 and BRCA2. Unfortunately, BRCA1 and BRCA2 are not the only genes known to confer a genetic predisposition to breast cancer (and sometimes to other cancers). Those who test negative for BRCA1 and BRCA2 may wish to discuss with a Genetic Counselor the possibility of additional panel testing for pathogenic mutations in other genes (e.g., ATM, CHEK2, PALB2, PTEN, TP53, and/or others), the recommended scope of any further testing (i.e., which other genes), as well the pros, cons and limitations of any recommended testing. Patients may either elect to pursue or decline further testing.

See for example, Desmond (2015), "Clinical Actionability of Multigene Panel Testing for Hereditary Breast and Ovarian Cancer Risk Assessment"

http://jamanetwork.com/journals/jamaoncology/fullarticle/2425836

Lastly, in some families, despite a strong family history of breast cancer, no pathogenic mutation in any of the known genes is identified, suggesting that there are other genes that either alone or in combination may confer risk of breast cancer.

BarredOwl