Has anyone here been dx with phyllodes tumor?

denisegreen said:

Phyllodes Diagnosis
Hey Cheyenne:
I was diagnosed back in December with the Phyllodes Tumor.  I underwent surgery to remove it and then had to have a second surgery to remove more tissue.  After the second surgery the pathology showed the tumor to be boarderline but they showed clear tissue all the way around the tumor.  Thought I was done except for reconstruction and was in the process of setting up the reconstruction surgery when my six month checkup showed another tumor.  It had returned within six months and this time my doctor recommended a mastectomy.  When they took it out last month it was 7cm and was malignant.  Because this tumor is so rare and that it reoccured so quickly my doctor sent me to an oncologist.  My doctors were concerned because of how fast it reoccured, the size it was in such a short time and that it was malignant.  They did however show clear tissue all the way around the tumor again this time and they also tested 3 lymph nodes and found no cancer present.  The oncologist I saw thought that since it was so aggressive that he thought I should have radiation therapy, but he wanted to consult with a specialist in New York that handles rare cancers.  Unfortunately they both recommended that I have radiation therapy as a precaution to make sure that it does not spread through my blood or come back in the chest wall.  I don't want to scare you but you do need to keep a very close watch to make sure it does not reoccur and maybe you need to consult with an oncologist.  They tell me chemo does nothing for this tumor but radiation has been done in the past and may help prevent it from spreading to the chest wall or lungs.  I feel good about my treatment path, especially since my doctor consulted with the specialist in New York who has treated these tumors before.  It is scary facing a disease that is so rare especially since there is no standard treatment. Good luck with your recovery process and I hope I helped!

Good Luck!
Denise   

Dear Denise,

I'm a 36 year old from Sydney Australia,who was diagnosed with borderline phylloides tumour 5weeks ago in the left breast. I had a wonderful surgeon and a radiation oncologist who said that I have two options , a mastectomy or radiation therupy. So considering my age I opted for radiation therupy Due to start in 2 weeks time. I have had breast lumps excised at 20 and 34 years of age at the same area of left breast and both those instances I was told they were fibroadenomas. But I'm pretty sure now they must have been phylloides at least the last one.

I am shocked and devastated but hanging on to my work and my life. Cause I had a whole new future planned ahead of me with my wonderful partner in it. He has always been supportive to me. 

How was radiation treatment for you? Was it really effective in preventing a recurrence? Please let me communicate with others with phylloides tumours if you know any of them who had taken rads.

Lastly I thought it's worth mentioning that I am in the medical profession and I have helped ease the pain of so many in the past and continuing to do so at present. Its just unbeleivable how weak and fragile I feel after my own diagnosis. I felt like giving up everything.

I want to thank you all immensely for this forum, which is a platform to meet poeple of similar circumstances. Reading survivor stories has given me strength and hope to look forward to the future!

wish you all the very best

Mjhope