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Welcome to our CaringBridge site. We hope to keep in touch with everyone during this journey with breast cancer.
My Story is a summary of the diagnosis and surgery part of the journey. Feel welcome to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook.
Reading your words is a great source of inspiration and comfort for me.
Dan and I want to start this page by saying we are overwhelmed by the incredible support we have received from everyone. It has been very comforting knowing that we have friends and family and neighbors that are so caring, concerned, and available to help. Harrison and Jocelyn are also feeling the wonderful warmth of family and friends helping them get to school, feeding them, and having lots of play dates.
Although we are only at the beginning of this roller coaster ride, it seems so much has happened already. I have Stage llA cancer -T1cN1MO (1.4cm tumor)
In July 08 I felt a lump in my right breast. It was in an area I had been watching for about a year –(no lump-and my doctor had said it was nothing). As it was slightly tender, I was hoping it was a cyclical monthly cyst. When it did not disappear in August I found a new doctor who sent me for a mammogram. On Sept 5th I had a diagnostic mammogram and they sent me right into ultrasound. Seeing the looks on faces of everyone I knew it was not good. They scheduled me for an ultrasound guided core biopsy. Not a pleasant experience. They use a ‘gun’ to shoot a rather large needle into your breast while you have your arm over your head and your leaning on your side -they did this two times. If they had tried again I think I would have knocked the radiologist out!
On Sept 9th I got the call that it was positive for breast cancer. I knew based on the reactions from the nurses and radiologist that is was going to be positive, but hearing it out loud was numbing. I do not have any first hand experience with breast cancer. My whole life I have read stories of survivors and seen pictures of the Race for a Cure and looked at pink ribbons. So I didn't see this diagnosis and worry about dying - I just thought O.k what does this mean for me and my family. You read the stories in the magazines and you think, they survived and it wasn't so bad. My expectations were nothing compared to what has happened.
No one talks about the pain, the physical pain from the surgeries and the biopsy for that matter. It is very debilitating.
After talking with numerous surgeons, plastics surgeons, and radiation oncologists, and an oncologist (some of them up in NY at Columbia/Presbyterian) - I decided to have the surgery in Charlotte , it would be easier on the kids, and I would have a lumpectomy vs. a mastectomy. I wasn’t ready yet to give up feeling in my breast. That is a huge loss and after nursing my kids for a very long time I was just getting used to having them for myself.
They all said I had caught it early, that a lumpectomy with radiation (you have to have radiation if you opt for a lumpectomy) and hormone therapy would be all that I needed. I was pretty optimistic. My MRI did not show extensive disease and the pathology report was pretty good. I was estrogen and progesterone positive, HER/2 negative, with a histologic score of 6/9. It was a Grade 2 tumor, intermediate growth.
I had a lumpectomy with a sentinel node biopsy (SNB) on Oct 27th. They removed 3 nodes under my arm in the SNB and found one with macrometastasis .4mm. That was a huge blow- chemotherapy was now in the picture. And my margins weren’t clear. In order to have a lumpectomy and not risk a local recurrence of the cancer they have to have a clear or cancer free margin on the path slides. I had a lot of pain with the SNB, restricted movement and painful numbness in my arm and arm pit. This pain was not common for SNB so I was very upset when they told me I needed an axillary node dissection to remove the rest of my nodes under my arm. That procedure has many documented risks of pain and lymphedemia.
After consulting with a breast cancer team at Wake Forest, and much angst on my part, I decided to have the re-excision with the axillary nodes dissection. On Nov. 10th, two weeks after my first surgery I went to the surgery center in Charlotte again. They got new margins, took out my nodes and placed a port in my chest to administer chemotherapy. It was a nightmare experience that I will not go into here, but I will not have surgery there ever again.
As feared I had even more pain and restricted movement from this surgery. Because of the port placement on my left side and the AXND on my right side (with a drain) I can’t drive, wash my hair, get dressed, reach for anything above waist level, and it is difficult to give hugs to my kids. There are not enough words to use to thank my mom and Dan for being my caretakers. They have both gotten quite good at washing and blow drying my hair (quite a site!), emptying the drain, and helping me just get through the day. I have already relied on many people for play dates and rides for the kids and even getting me to a surgeon appointment! It is very hard for me to ask for help, but knowing that it is there is such a relief.
(continue at the my bottom of the 2nd page of the my journal section)