Phyllodes Tumor

When I was first diagnosed it was very difficult. I searched the internet after being told that Phyllodes was very rare as a matter of fact my Dr. had never heard of it before. I found one site that was for rare cancer that was helpful but was hard to really connect with the folks in the group. I started a group on Myspace where I met several women and felt very connected. Another girl had gone on to Facebook and started a group there as well. The Myspace group is no longer intact but the folks in that group have switched to Facebook and we have a great support group now with women from all over the world and it is very informative and helpful. When I was first diagnosed it was very difficult. I searched the internet after being told that Phyllodes was very rare as a matter of fact my Dr. had never heard of it before. I found one site that was for rare cancer that was helpful but was hard to really connect with the folks in the group. I started a group on Myspace where I met several women and felt very connected. Another girl had gone on to Facebook and started a group there as well. The Myspace group is no longer intact but the folks in that group have switched to Facebook and we have a great support group now with women from all over the world and it is very informative and helpful.

Without seeing the pathology or other reports, I would suggest twice-yearly exams by your surgeon or oncologist, annual digital mammography for the unaffected breast, and consider MRI and ultrasound as well depending on breast density. Because breast MRI does get some of the chest wall in the images, it can possibly be used to evaluate for chest wall recurrence, although there are some studies suggesting that post-mastectomy MRI is not any better than a careful physical exam. Without seeing the pathology or other reports, I would suggest twice-yearly exams by your surgeon or oncologist, annual digital mammography for the unaffected breast, and consider MRI and ultrasound as well depending on breast density. Because breast MRI does get some of the chest wall in the images, it can possibly be used to evaluate for chest wall recurrence, although there are some studies suggesting that post-mastectomy MRI is not any better than a careful physical exam.

It is important to note that phyllodes tumors are often categorized as benign and malignant. Benign phyllodes tumors are more common, and the treatment is surgical excision with a clear margin. They can become quite large, and rarely, mastectomy is needed; most can be removed with a lumpectomy. They do have the potential to recur in the breast, but do not have the potential to metastasize or spread to other areas of the body, and no other treatment besides removal is recommended.

Malignant phyllodes tumors are fortunately much less common. As mentioned by knutter1, chemotherapy has not been shown to be effective, and the data regarding radiation therapy is limited, but radiation therapy might be beneficial in some cases. Phyllodes tumors are a rare sarcoma type of cancer that occures within the connective tissues of the breast. It is technically a soft tissue sarcoma but originates within the breast so in some respects and fortunately we are now also catagorized as breast cancer as well. For US Phyllodes survivors this is fortunate as we can now have coverages previously not available from insurance and orgizations as well as making it easier to locate other Phyllode survivors. This is very helpful when dealing with a rare cancer as there is little or no information on treatment options and so forth. Phyllodes is reported to rarely metastisize though will often reoccur in or near the previous location. Surgery is the main treatment for Phyllodes or PT's until recently, but there was a study done in NH by Dr. Barth that has indicated that radiation has reduced the reoccurance rate. Thus far chemotherapy has proved to be useless in treatment of PT but when there is mets. often the treatment will include chemo but as far as I know there has been no success in it's use. It is unfortnate but if the mets are in a location where they cannot be surgically removed the prognosis is not good.

Phyllodes tumor is a neoplasia of periductal stromal breast cells, sometimes benign, sometimes malignant (cystosarcoma phylloides) Phyllodes tumor is a neoplasia of periductal stromal breast cells, sometimes benign, sometimes malignant (cystosarcoma phylloides)