Log in or Register to participate in these discussions

Phyllodes tumour

Phyllodes tumour

Posted by Inked on Jun 23, 2020 9:15 pm

Hi there. I have recently joined the cancer community - I was diagnosed last week with a malignant Phyllodes breast tumour (cystosarcoma). It's a rare breast cancer that behaves differently than other breast cancers. I'm looking for some help and support on how to navigate this new world, especially with a rare cancer. The medical folks don’t seem to know what to do with me. I feel like I’m falling through the cracks.  Anyone out there with malignant Phyllodes? Or have experience navigating the medical system with a rare cancer?

Re: Phyllodes tumour

Posted by ashcon on Jun 24, 2020 4:05 pm

Hi Inked‍ 
I'm glad you found this site. I'm sorry to hear of your diagnosis, but this is a great place to start.  Rare or not, cancer is cancer. Caring compassionate support is a common denominator here, regardless.

It's been awhile since they posted on this site, but Sweet RoseMarnyO‍ and Dragonfly‍ all indicated they have/ have had Phyllodes Tumour.  MarnyO posted this discussion, sharing a tool that could be used to network with others facing the same disease. 
https://cancerconnection.ca/discussions/viewtopic/39/56148?post_id=249171#p249171
I am hoping that more information and networking touchpoints have become available in Canada since these ladies posted here.

The Cancer Information Helpline is also a great place for securing more information and resources.  Knowledge is such an enabling power over this disease, so I am glad that you are seeking to build your power!

How was your cancer discovered?
---- "Nothing ever becomes real till it is experienced." ----

Re: Phyllodes tumour

Posted by Inked on Jun 27, 2020 9:49 am

Thanks Ashcon. I have reached out to them but haven't heard back. They haven't been active on this site for several years so I'm not very hopeful.
I found a more active group on Facebook and will shift my attention then.
Again thanks for taking the time to respond to my post.

Re: Phyllodes tumour

Posted by ashcon on Jun 28, 2020 1:21 pm

That's great, Inked‍. I'm glad you found a good support group on FB.
I learned that because there are so many aspects of cancer that go beyond just your diagnosis (like emotional impacts, family impacts, financial impacts, nutrition/health/exercise considerations, etc.) that there is an abundance of resources out there. Many of them at no charge! 
You may have fun poking around the Community Services Locator in your area/province. I found some pleasant surprises in my own city when I started looking around. 

Stay connected, stay strong, and stay in touch here, if you're up for it. I'm sure your experience and learnings will help others who find themselves with this rare type of cancer!
---- "Nothing ever becomes real till it is experienced." ----