LINDA: Hello, I'm Linda. In August I will be a 5 yr. survivor of intermediate grade, malignant phylloides tumor of the breast. I joined the forums here looking for others with the same diagnosis because it was so rare. I found what I was seeking!
I had a lumpectomy, followed by a second excisional surgery. The surgeons removed enough breast tissue to qualify me for reconstructive plastic surgery, but I have chosen not to do that. I did not have radiotherapy or chemotherapy treatments. I had difficulty finding others with my disease and conclusive information about treatment for the disease, so I had to read the scant research and make my own treatment decisions. This was not easy, since the journal articles for this type of rare cancer are very conflicting and the oncologists that I had seen in my area could not agree on a similar course of treatment.
My tumor had well differentiated cells, but because of the size (4.9 cm) and the mitosis (11), I was considered a bit too high risk to put in the low-grade category. I sent some tumor slices to Dana Farber and to an oncologist in Florida to be evaluated. They both agreed with one of my local oncologists, so I chose him as my primary treating physician.
I wanted a mastectomy, but my surgeon wanted me to wait. I thought a mastectomy would keep me from worrying about the cancer returning, but I think the concern will always be there. I have had routine follow-ups, with scans, including bone scans; CT's, and way too many mammograms. Every time I find something new, it's back to the breast center for a 'mammo'.
This breast cancer, and the controversy about it's level of malignancy, made me feel 'left out'. I have been told this same thing by other rare breast cancer survivors. I had to wonder, "Am I allowed to wear a pink ribbon" My oncologist said yes! I can honestly say that I was a bit jealous of the 'regular' breast cancer ladies. At least they get to do treatments that give them a sense of doing something proactive. I wanted to do treatments also, but there are no 'proven' treatments for many of us with rare breast cancers. There are not enough patients to 'prove' them! I am constantly looking over my shoulder, although my paranoia lessened after the 3 year mark. As my 5 yr anniversary approaches, those old feelings are returning.
In my travels, I did find others. I saw a young lady from N. Dakota on Good Morning America and I found 4 other ladies. Two, unfortunately, have died from metastasis. One lady is doing well, but I lost contact with the other. I scour the internet and other resources for new information on this cancer. If its been published, or on the web, I have it!
JUDY: Hi Linda, My name is Judy. I am a one year survivor of this little monster. I had an excisional biopsy that was diagnosed as a poorly differentiated, high grade, malignant Phyllodes tumor. My slides were sent to Mayo for a confirming second pathology, and they agreed with the original pathologist. A second pathology check is always wise with rare tumors.
I elected to have a mastectomy. Like you, I chose not to have reconstruction. I have a prosthesis that I am comfortable with and a fantastic husband who has been really supportive about my choices. I too have decided not to go through reconstruction. From what I've read, treating a recurrence may be easier without reconstruction.
This rare cancer is very frustrating for me because I have not been able to find anyone either. I was told about a young lady (19), who lives about 40 miles from where I live. She was diagnosed at the age of 14. I have been trying to contact her, but have had no luck yet. I had heard from another lady, in California, but we lost contact with each other.
Oddly enough, I am a cancer registrar by profession. In that capacity, I have learned that it may be difficult for cancer registrars to properly report rare cancers. That leads me to believe that this cancer may be more prevalent than is reported. I suppose my job has helped me to learn a bit about cancer, but it seems very different when it's my own statistics that appear in the registry database.
I'm married, with three children, two step children, and fifteen grandchildren. I really don't wish cancer on anyone, but it is weird to not have other survivors to talk to. The support groups locally aren't much help. They all think I'm so lucky not to have had chemotherapy and/or radiation treatments. I know I am, but that only makes me feel like I do not 'fit' with others who have.
Some of my own doctors don't seem to know much about my disease. Today was another 3 month oncology follow-up. So far so good! I met a new nurse practioner, who had never heard of Phyllodes tumors, so my visit with her became another 'teaching moment'.
My oncologist and I have done a lot of research during the past fourteen months; although there really isn't a lot of research to be found. I have found enough information to realize that even patients with the benign form of this disease, need to be vigilant with their follow-ups. Benign and borderline Phyllodes tumors can become aggressive and even metastasize. I don't see that one needs to be scared about it, but they need to be realistic. Follow-ups are important!
Linda, I'm very happy to have found you! God Bless You.