TN IBC + IDC and Questions about Dr. C
I was recently diagnosed with IBC and IDC, both are tripple negative stage 3c, with lymph node involvement in the axillary, subclavicular, mediastinal, and neck region. I stared chemo two weeks ago, and had my second dose yesterday. I am on Adriomycin and Cytoxin every two weeks.
Reading this topic, I made an appointment with Dr. C at Fox Chase, which I have next week.
I have many questions regarding treatment and the upcoming appointment.
1) Aside from usual side effects, the lymph nodes in my neck feel so swollen and hurt, that they make it uncomfortable to talk, breathe, eat.... after two doses of chemo, I see no improvement. When in the treatment process did your lymph nodes begin to decrease in size? Should I worry that my treatment is not working?
2) Which questions should I ask / did you ask Dr. C when you came to see him?
3) I have not had a PET scan - when I asked my primary oncologist about it, he said "you don't need it, we don't do it here." How did your first appt with Dr. C go? How long did it take? Did you have to have tests done at their facility?
4) Did any of you have a situation where you had one treatment prescribed to you, came to Dr. C and had the treatment changed? How did your primary oncologist react? How willing were you to change it? How did you know it was the right thing to do? My oncologist is fairly well-known in the New York City area, and when I mentioned Dr. C, he said he has never heard of him.
I am worrying about everything and still trying to come to terms with the diagnosis. Please help if you can answer any of the above questions!
Comments
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Andrea,
I was diagnosed ibc w/ 3.5cm idc tumor & bone mets in 6/09. My onc put me on TAC chemo, (taxotere, adriamyacin & ctyoxin) together for 8 months. My ibc breast was still red and a bit swollen during all my chemo. My onc had me do Pet scans every 3 months during the first year which gave both of us an idea of how things were working. The chemo eliminated my tumor completely and reduced my SUV values in lymph nodes that were infected. My breast no longer felt hard and was as soft as the opposite breast but still red. I was also on zometa for my bone mets which works really well. After chemo, I went on Femara due to ER/PR+ status.
After a year being stable, I had a bi-lateral mastectomy and just completed another Pet scan 6 months after surgery. All came out clean, no lymph nodes infected, just healed lesions from prior bone mets.
I know how you feel as I've gone through this journey. I hear Dr. C is the best at treating ibc. I've been very happy with my onc & surgeons here in the bay area so I did not go see Dr. C.
I just wanted to let you know that your treatment can work very well for you. I would encourage you to have the scans done as they are so important in letting you know what's working. I'm sure Dr. C would agree.
I hope your treatments bring you excellent results and keep us posted.
Hugs,
Terri
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Dr. C was my dr, prior to his move to Fox Chase. He is a wonderful man and a fine dr. I was IBC and triple neg. dx summer of 2007 NED since summer 2008. Dr. C is the world's leading expert on IBC, so if your dr has never heard of him, that would make me uncomfortable. I live in the Houston area, near MD Andeson where the IBC clinic is located and women come world wide to get the treatment plans and often have the treatment back home. And I can tell you that MDA is 18 ahead of the curve on most aggressive treatment for IBC as they are the ones doing the research and writing the plans that other hospitals follow.
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Dr. C is my doctor at Fox Chase and as far as I know he is one of the very leading experts in treating IBC.
Laura
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