Ask an Expert is a free question-and-answer service about breast cancer and breast health that is available on weekends. If you'd like to ask a question or comment, please visit us again on Saturday or Sunday. In the meantime, please search the existing topics using the search tool at the top of the page. It's quite possible that one of our many existing topics already addresses your question.
If you would like a consultation with a breast specialist at the Johns Hopkins Avon Foundation Breast Center, call 443-778-2778. It is possible to get an appointment for a second opinion within a few days of contacting us.
We hope you find the information helpful!
|Forum||Questions||Ask a Question|
|Questions to ask to ensure you are in good hands
Questions on what to ask to make sure your in good hands.
|Asked||Publicly Submitted Question|
|3/19/2012||I'm really concerned if I'm getting good care. I was dianosed the first of November with DCIS. After surgery the diagnosis was changed to stage 1 invasive because 3 areas of invasion were found, 1 5mm and 2 3mm areas. 5 lymph nodes were removed and found clear and I am ER and PR positive. A few things about my care are really concerning to me.|
1. It was 11 weeks before I could get in for my first surgery. Initially the radiologist that did my biopsy told me they'd want to do surgery within a month.
2. It's been 9 weeks since my surgery and I still haven't gotten my oncotype results. The oncologist waited 2 weeks to get the Her 2 status back before even ordering the oncotype. Then he was on vacation. Then when the oncotype result came back it was incomplete and had to be reordered. Then he was on vacation again. Between lab errors and my oncologist not bothering to get around to processing my case because of his vacations or days off or whatever else, it's taken 9+ weeks and counting in order for me to get a test result that should be avalible in 7-10 days.
3. I did seek out a second opinon from an oncologist that I later learned is a colleauge of my first oncologist. When my first oncologist got wind that I'd sought a second opinion his appointment scheduler called me and said they knew I saw someone for a second opinion and wanted to know if I'd be in for my next appointment because they'd like to fill the spot with another patient. I thought that was kind of inappropriate.
Honestly, I don't know what to think. Neither oncologist seem to be in any kind of rush to proceed with my treatment. I've had diagnosed breast cancer for nearly 5 months and still haven't had any treatment more then the surgery to remove it. I see other patients moving quite quickly through their treatment and I feel like I'm at the bottom of everyone's list. I've heard that the 2 oncolgoist I've seen are some of the best. The first oncologist I mentioned is the head of various cancer boards. The second is a breast cancer specialist. Honestly, I'm afraid their all so high and mighty that they don't even notice my little stage 1 cancer over here.
I don't have much to compare things too. I go to the cancer support group and everyone else seems to be getting timely treatment. But maybe it's normal in some cases like mine that they take months and months to do things that should take a few weeks.
My husband and I are afraid to get to fussy about things with the doctors because it wouldn't be wise to burn bridges. We shouldn't feel that way but it's a reality. You don't want to annoy the doctor. I do call once or twice a week to see if my test results are back. They just tell me they'll contact me when they come in and that the realize I'm eager.
Emotionally this has been awful. I think the emotional toll of dragging out treatment this way is considerable. At this point I feel so drained and depressed that I'm not in any place to actually do any chemo or hormone treatment anymore. I've long passed anxiety and anger with the situation and have moved into a place of compliance and numbness and depression. I have family and friends constantly asking me about my test results. Even my support system has lost interest. I've put my life on hold week after week after month after month because there's always suppose to be some test result, but there never is.
|Replied||JHU's Breast Center Reply|
|3/20/2012||Thank you for turning to the Johns Hopkins Breast Center. I am so sorry to hear your story. It is hard enough to be diagnosed with breast cancer, but you are right, the waiting is very hard. It actually takes about 3 weeks to get the Oncotype result back, from the time it is sent. The lab, Myriad, is located in California, and you could call yourself to inquire on the progress of your test. Generally, after a lumpectomy, we would send out the breast tumor for oncotype, obtain results and then either initiate chemotherapy or not, approx time lapse from surgery approx 3-4 weeks. If no chemo therapy indicated, radiation therapy to begin, again usually starting 3-4 weeks post surgery, and at conclusion of radiation, consult with med onc for hormonal therapy, with your ER positive. A relationship with your doctor, should be based on mutual trust, and respect. Consider a formal consult at an academic cancer center in your area, even if you have to travel a bit. Only you can decide if you want to remain under this physicians care. Hope this helps and best wishes! If we can help, please call Sheila @ 443-287-BRST (2778).|
Please note: This service is not intended to provide primary medical advice concerning specific medical care or treatment. Ask an Expert is a free service operated by health care professionals at the Johns Hopkins Avon Foundation Breast Center. Due to the volume of questions and their complexity, there are times when medical oncologists, surgeons, radiation oncologists or oncology nurses are consulted for their input. These individuals volunteer their time for this service and will respond as soon as they are able. Please do not post or send the same question to us in multiple locations or categories.