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Recommended Oncologists/Teams in DC area? Hopkins?

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sleepylibrarian
sleepylibrarian Member Posts: 9
edited August 2022 in Just Diagnosed

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.

Comments

  • tntnsd
    tntnsd Member Posts: 124
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    I am so sorry that you have to be here with your tentative diagnosis. I can’t really recommend anyone, facilities as I don’t live in your area; however, I wonder if you can ask your OBGY for recommending different facilities and breast surgeon ( not general surgeon) as if she/he would like relatives to go to. I asked my primary care doctor for her recommendation and she did send me to the surgeon that she saw for her own treatment, I am really happy with the care I received.

    Hang in there. You are in a roller coaster ride now with lots of unknown, but it is getting more manageable and much better once you have your treatment in place.

    I wish you the best.

  • moderators
    moderators Posts: 8,069
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    Sleepylibrarian, we are so sorry to hear about your experience thus far - this is certainly stressful and difficult enough without the added stress of such a traumatic diagnosis process. We second the suggestion of reaching out to your GYN for another recommendation; it sounds like you have a wonderful doctor-patient relationship with them and perhaps they are able to connect you with another provider to get the ball rolling. We also have a forum where members recommend their resources, including medical facilities and providers, there are several location-specific people and/or places listed there: https://community.breastcancer.org/forum/26.

    The Mods

  • jonib
    jonib Member Posts: 94
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    Sleepylibrarian - I understand how totally frustrated you feel. When I had a mammo and ultrasound that showed a potential malignancy (it turned out it was malignant), I also had problems finding a doctor that could see me since I was not staying at the hospital where I had the mammo. I only managed to find someone because my friend's cousin was a radiologist at a leading NYC hospital and she did the biopsy and referred me to my surgeon. I agree with tntnsd that you should ask your obgyn for a recommendation. Don't worry about waiting a few weeks, the delay should not be an issue. Besides GW you can also try Georgetown. My surgeon ended up going there but recently moved on to a different position or I would have recommended her. Also, some hospitals have nurse/patient navigators which may be helpful. I hope that you find the right person so you can get the information you need.


  • sleepylibrarian
    sleepylibrarian Member Posts: 9
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    Thank you for the replies, suggestions, and pointers to other forum posts so far. I will definitely ask my ob/gyn, that's a a great idea.

  • mocogram
    mocogram Member Posts: 94
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    sleepylibrarian, I live in MoCo and have been going to Maryland Oncology Hematology since my initial breast cancer diagnosis in 2016 https://marylandoncology.com/. The practice has offices throughout MoCo. I usually go to the Aquilino Cancer Center next to Shady Grove Hospital.

    In addition to very knowledgeable and caring doctors and staff, I really like that they can provide most services needed to diagnose and treat your cancer from diagnostic (MRI, CT scans , blood tests, surgery, infusions and radiation.

    If you are looking for a place to start, I recommend a consultation with Dr. Surupa Sen Gupta https://marylandoncology.com/staff/surupa-sen-gupta-m-d/. She's a breast care oncologist and surgeon on staff at Maryland Oncology.

    Until you can get some answers, try to remain as calm as you can, take lots of deep breaths and do whatever you can to keep from dwelling on the worst case. I know the waiting is often the worst part. Once you get some answers and a plan, hopefully you will be less stressed.

    Moco Gram (Jan)

  • specialk
    specialk Member Posts: 9,226
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    Sorry you find yourself here - and I sympathize with your frustration in trying to get a firm diagnosis and then formulate a plan that you are comfortable with. I lived in NOVA for 10 years, but had moved to Tampa a few years prior to my breast cancer diagnosis. Once I was done with treatment I enrolled in a clinical trial at Sibley Hospital in NW and traveled up to the area many times over the three years I was actively in the trial. Sibley is a part of Johns Hopkins, but is a smaller and more navigable center. I found the admin part of this trial to be seamless, all of the hospital staff I dealt with were awesome, and I was able to take the metro and catch their shuttle right outside the door of the station since i stayed with friends in Virginia each time I came up. They do have a breast center, a dedicated nurse navigator, and of course the resources of Johns Hopkins should they be needed. Something to consider, and here is a link to their page - which includes the number to reach the nurse navigator. In your shoes I would be focused on finding an oncological breast surgeon. I would think this type of surgeon would be best able to advise you on surgical choices, while leaning on pathology for a fleshed out report.

    https://www.hopkinsmedicine.org/kimmel_cancer_center/locations/sibley/sullivan-center.html

    Additionally, Georgetown Lombardi is a NCI Center (MedStarHEalth) and they have breast care locations all around the metro DC area, including some in Maryland.

    https://www.medstarhealth.org/services/breast-cancer

    University of Maryland is also an NCI Center, and linked is a page that shows their nurse navigator, down toward the bottom right:

    https://www.umms.org/umgccc/cancer-services/cancer-types/breast/specialists

    Wishing you the best and hoping you find the right fit with docs who take great care of you. That is what we all deserve, right?

  • ranunculus
    ranunculus Member Posts: 1
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    Hi sleepylibrarian, I live in MoCo as well and ran into a similar issue with finding an oncologist/team. I ended up at Sibley JH but not before running into difficulty even within the Hopkins system. I had to wait a month for an appt with someone from the Kimmel Center in Baltimore but went ahead and met another dr before then.I would say find someone sooner than later even if you have to get second, third, or fourth opinions later on. At least you will have information and can make the best decision for yourself. I didn’t go with the first or second dr I was recommended bc of not-so-great bedside manner. Glad I didn’t go with them. I’m finding I need a compassionate dr esp going through treatment.

  • ktsmitty
    ktsmitty Member Posts: 15
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    Hi. I’m also in MD, but in St. Mary’s County. I’m making the trip up the road, across the bridge to Calvert County. They are my second opinion.They have a breast center there and a few of the Doctors originated with Kimmel and Hopkins. So far, they’ve been helpful for me. I’m also very new to all this with less than a month since my diagnosis.

  • reader425
    reader425 Member Posts: 858
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    I'm late to this thread but am in MOCO and had my treatment at Hopkins but like Special was at Sibley. I also was in 2 clinical trials there. Admin stuff can be a little frustrating but I loved my docs. Here they are: Dr. Karen L. Smith medical oncology; Dr. Jean Wright radiation oncologist. Both were exceptional in my opinion. My surgeon is not with Sibley anymore but at Aquillino noted earlier Dr. Collette Magnant. I felt I had the A Team. Caring and all highly regarded.

    I think administrative glitches and dropping the ball seems to be part of our post- covid world in particular. PM me if needed. Rooting for you.