Hi, everyone. I was diagnosed with triple negative breast cancer in November 2008. I'm sorry this will be a bit of a long note. It's been a long 16 months! There's always been some question as to whether or not it was inflammatory breast cancer or locally advanced breast cancer. I had two treatments of Adriamycin/Cytoxan and then developed a tender cord under my left arm, so my doctor added taxotere to the next two chemo doses.
At that point I switched my care to the cancer center in Tucson (I live in Phoenix) because I was very unhappy with my original doctor. I felt like one patient on a conveyor belt of patients. It is in Tucson that I was told they thought my bc was locally advanced versus IBC. My doctors there felt I had not responded to the above treatment and I started a 16 week course of Abraxane weekly and Avastin every other week.
I then had a double mastectomy, prophylactic on the right, and lymph node dissection on the left. There was no remaining cancer in my breast at the time of the surgery, however six out of six lymph nodes were positive. After recovering from the surgery, I had 33 radiation treatments and was on 1000mg of Xeloda at the same time. My skin burned pretty badly from the radiation and my mastectomy incision on the left opened up. I had to have a latissimus muscle and skin graft done to repair the damage.
Once I healed from that surgery, I started a course of Navelbine every two weeks and 1500mg of Xeloda, two weeks on, two weeks off. This was administered by a local oncologist so that I could continue working. I finished this course of treatment the end of January. At the beginning of January I had a Cat scan. The report stated I had two vertebrae with areas of possible suspicion for sclerosis. My oncologist in Tucson looked at the films at the end of February and didn't feel like the spots were cancer, but told me to get an MRI at my convenience just to confirm. I had that done over spring break and got the results Thursday and had a brain and cervical spine MRI on Friday to confirm.
I have an 8x7mm lesion on my spinal cord at the level of C2 and areas of bone metastasis on numerous vertabrae along my spine.
I went for my planning session for radiation to the lesion on my spinal cord Friday afternoon, will have the trial run on Tuesday and start treatments on Wednesday. I go to Tucson tomorrow to see my oncologist and make a plan as to how to treat the bone metastasis.
I am also having a lot of difficulty breathing, coughing a lot and getting very short of breath with any exertion. My radiation oncologist is not sure what the cause of this is. It is possible that the lesion on my spinal cord is effecting the nerves that control my breathing and if that is the case he say it should get better as the lesion shrinks. I've also had pleural effusions in the past that caused shortness of breath and my scan did show moderate pleural effusions bilaterally, so that might be the cause, though my shortness of breath is much worse this time. And, of course, there is the possibility that the cancer is also in my lungs. I'm thinking/hoping my oncologist will order a chest CT scan tomorrow to give us a more definitive answer.
So, I guess I am just asking for advice. I'm having a hard time thinking clearly right now. What questions should I ask? Have others been in similar situations and what treatment did they recieve? Any advice/information you have to offer would be greatly appreciated.
Martha/48/Phoenix