Hi, I'm Lucy.
At 34, I have been dealing with cancer on and off for 19 years. It seems incredible to me that it has been that long, and also that I have lived for more years with this dancing behind my back, that without its jig.
To confuse things, I have had two different cancers, at various points. My first cancer was Ewings Sarcoma, I was diagnosed with this in 1999 in my pelvis, with a recurrence in 2005 in my right lung.
The latest cancer came along in 2015 when I was diagnosed with Sarcomatoid Carcinoma, alternative name Carcinosarcoma (mine is spindle cell variant). This a long time to get diagnosed and I really had to bang the drum with this one, surprising considering my history and the thing growing in front of our eyes.
After diagnosis, it stumped the medics because it started just below my left breast, in the skin, but it grew up into the breast. The confusion was whether I should be dealt with by Dermatology or Breast oncological teams. Regardless of the team, they cut it out, along with a large chunk of my left breast. I recovered and went on my way.
At the beginning of 2017 I noticed changes in my cleavage, and a mega, ugly tumour found a home and grew, along with a nice tumour in my left breast. I got allocated to Breast, and they treated my cancer like a Triple Negative Breast Cancer, due to it's location, aggressive nature, and lacking any standard protocol to follow with this type of cancer, and someone with my history. Bilateral mastectomy (not possible to reconstruct), two different regimens of chemo (didn't work) and radiotherapy.
Three months ago it is back and has spread to axillary lymph nodes in both armpits. Two weeks ago I had them removed.
What now? The doctors are amazing, but they are shrugging their shoulders and saying it is so rare that no one has established protocols because there aren't enough people with it.
I am hoping to reach out and see if anyone can recommend any doctors I can speak to that have experience with Sarcomatoid Carcinoma.
Any advice would be amazing. I have been in touch with Peeweetom, and we have different subtypes of SC.
