Newly diagnosed...help???

Hi Meredith,

I have a paper on phyllodes and treatment options etc that may clear some things up for you that I can send through if you need it. Private message me you email address and I can send it).

I have done quite a lot of reading on phyllodes from various research articles that I have searched for myself or they were posted through the support groups on facebook.

This is the main information that seems consistent : Phyllodes Tumors have around a 25% chance of reoccuring and whilst they generally come back more aggressive than the original tumor it is thought that most reoccurences are due to inadequate margins being taken in the first instance (that is margins less than 1cm clear of all tumor and tumors that are shelled out....etc). All phyllodes tumors should be surgically removed with >1cm margin!! Phyllodes tumors also from the available research metastasise in approximately 5% of cases to other areas of the body (most common places documented include the lungs, bones and liver) and most have been from malignant phyllodes however there are some cases of Benign and Borderline tumors metastasising. Chemotherapy is thought to be of no assistance in treatment. Radiotherapy is still being researched and tends to be used mostly for those that have malignant tumors or where adequate margins cannot be obtained - the benefits of radiotherapy for phyllodes at this stage are not well documented.

There is not a huge amount of research or information out there but it is important to find information from from reputable sources when making decisions about treatment - hence why I have read as many journal articles on the subject as possible and spoken at length with my specialists. The type of treatment you choose is a personal choice but should be made with the best information and knowledge available to you. You are the only one who is responsible for your health and you should be able to request what form of treatment and follow up it is you want (within reason) and with appropriate guidance from the specialists and surgeons that you trust. In this situation where there is not alot of research or understanding about our tumor so we must advocate for ourselves and that means being well prepared with facts, knowledge and information.

If you would like further information sent to you please let me know and I can send you some through a personal email.

I too have had shoulder and back pain after my surgeries and particularly after my lat dorsi reconstruction. I found that swimming improved this greatly and my plastic surgeon was amazed at how well my other back muscles have strengthened to compensate. I now swim once a week and go to the gym and do boxing, step and pump classes regulalrly - so it does get better.

I hope this helps and I hope you are recovering well. Cheers Katie. xo

P.S sorry for the long post.