Recommended Oncologists/Teams in DC area? Hopkins?
Hi, I'm currently reeling from my surprise diagnosis at age 42 after my first mammogram, and I'm looking for recommendations for doctors, and advice on figuring out who to see, what to do, etc.
1. I have a tentative diagnosis for a rare papillary pre-cancer (papilloma with atypical ductal hyperplasia or DCIS, can't rule out papillary carcinoma), but these are notoriously difficult to distinguish in pathology, so I need a second opinion on my biopsy. My pathology report has almost no info, they didn't even test receptor status, and I don't trust the diagnosis at all.
2. My lesion is massive--the visibly affected area on mammography is about 9x7x6cm, roughly the size of a small mango, so the recommended "excisional biopsy" to clarify the diagnosis would actually be about 1/2 my breast. And if it is papilloma with DCIS that widespread, they would recommend a full mastectomy anyway, so it would probably make more sense to do that all at once. However, I'd like to feel really, REALLY confident about that pathology before making either of those major body alterations.
3. I never want to set foot in VHC again. I had my imaging and biopsy done there, because my amazing gyno is there, and wanted me to be seen there. I live in Moco, MD, and VHC is far out of my way. I am willing to make that trek to see my gyno, but my experience with Women's Imaging and biopsy were 2 of the top 3 all-time worst encounters I've ever had with medical professionals. I have 2 rare disease diagnoses and I've seen a LOT of doctors, so believe me, worst bedside manner I've encountered is a seriously low bar to get under. The inadequate pathology was way past the last straw.
4. With a rare, difficult case, Hopkins Sidney Kimmel Center seems like the obvious place to head (they even have a rare tumors center), but I'm struggling to even get an appointment. After having a terrible experience with them on the phone, I'm more concerned about a couple reviews I've read about how disorganized things are there. The problem I had is that I don't know what kind of doctor to make an appointment with. They have separate lines for new appointments with Medical, Surgical, or Radiation Oncologists, plus a general number. I tried the general number and was on the phone for literally an hour with four different people trying to figure out how to get a second opinion from pathology AND an appointment with a doctor to discuss the results.
I was expecting a well-oiled machine, and I was really astonished that they could not clearly tell me, OK, at your stage in the diagnostic process, THIS is what we have you do. The woman I spoke to in pathology was pushy and unkind, and I got off the phone totally mentally and emotionally exhausted and just cried. I managed to get clear on how to send my samples in for a second opinion, but still don't have a clear answer for what kind of doctor to see for the appointment. I couldn't take the time today to call back and potentially spend another hour on the phone. Are they worth the hassle? It also sounds like it is likely to be 3-4 weeks to see someone there. Is that crazy? It feels crazy to wait that long--won't it be months before I'm in surgery at that rate? What if I don't even like the doctor they assign to me?
5. Alternatives for the best care for an unusual case? GW?
I have a million more questions, my diagnostic process was so terrible and abusive and stressful, and now it's been so impossible to even take care of this one next step, that I'm just feeling panic and despair. I can't imagine how I am possibly going to manage all of what is going to be involved here, especially after they put on drugs and treatment that makes me more exhausted and foggy than I already am. I want to feel taken care of by people I trust, and instead I feel like I've gotten dropped into a surprise cage-match with the healthcare system.
Any recommendations or warnings are welcome.