Regan's Story

---

I am new to this Phyllodes Support Group page, but not new to Phyllodes.  I have been on the emotional rollercoaster that comes with the diagnosis of PT for the last 18 months. I am not the one who had PT;  it was my sister.  I can’t begin to say I felt her anguish as if it were mine, but as a bystander of this cruel disease, I can say my suffering is still continuing while she is finally at peace.  My sister, Regan Wakelee, passed on February 8, 2016 from PT after 17 short months from her initial diagnosis. She was 45 years old. This is her story I’d like to share with all of you.  

In September of 2014 my sister had her first biopsy for a nodule she had felt in her left breast.  At the time of the biopsy the nodule was already bigger than the size of a grape.  The doctor actually came in on a Saturday to do the biopsy because he was alarmed at the size of the nodule and how fast it had gotten to that size.  Without pathology results, he told her just by looking at the specimen it was stage IV breast cancer and she should get her affairs in order.  That was the day cancer didn’t happen to other people; it was now a new and unwanted family member.  Pathology results took weeks to come back and when they did the diagnosis was PT.  Regan had a modified radical mastectomy of the left breast, removing the 3.5lb Phyllodes Tumor that had grown to the size of a cantaloupe.  The doctor claimed to have gotten clear margins, but the tumor reappeared a month later when my sister had to have a lumpectomy in the tissue that remained from the mastectomy.  By December we had confirmation Regan had Borderline Malignant Phyllodes Tumor.  The doctor said he had clear margins and the cancer was gone.  We knew from our research online the best “cure” is surgery, so we felt relieved to have this behind us.  A reoccurrence was expected at some point but we could let down our guard for a moment.  Regan was able to return to work in January of 2015.

February 2015 was time for 3 month follow-up scans.  So much for letting our guard down ever again.  The results came back and Regan had mets to the lungs, 12 nodules all together in both lungs.  I don’t know who was more upset, her, me and my mom or the doctors.  No one ever expected such results.  Again, her doctor told her to get her affairs in order, but we weren’t accepting that again this time. 

I was able to schedule my sister to see a sarcoma specialist at MD Anderson in Houston, TX.  We traveled from North Carolina to Texas in May 2015 with our hopes way up high for answers and maybe even peace of mind. We met with Dr. Maria Zarzour, a Sarcoma Medical Oncologist.  She has treated PT and had a good success rate with chemo for mets to the lungs.    Regan was ready to get started right away. We returned home (Asheville, NC) with Dr. Zarzour’s high potent chemo recipe. 

Regans’ doctors in Asheville agreed with the plan Dr. Zarzour laid out and quickly got the ball rolling.  All the labs were drawn and the port inserted so Regan could start chemo in June of 2015.  It was such a powerful dose, the chemo had to be administered as an inpatient over a 4 day period.  In conjunction with the chemo, Regan received oral and IV anti nausea meds and other meds to help her combat the side effects.  She made it through the two cycles like a champ.  The worst side effect she had was fatigue.

In July 2015, there were scans to see results of the chemo.  As with every other results we had gotten up to that point, the CT results were not good.  Regan’s tumors in her lungs had grown in size.  Surgery was not an option because there were too many tumors and they were too deep to get to. Her doctor in Asheville told her it was time to look into clinical trials.  To us that meant it was time for Regan to be a guinea pig for the next person who was diagnosed with PT. Luckily; however, the doctor consulted MD Anderson and came up with a new chemo regiment to try.  Regan and Dr. Zarzour were not ready to give up.

Regan started a new, longer cycle of chemo in August of 2015.  This one was much more taxing on her body.  She had mouth sores, extreme fatigue, swelling and redness in her hands and feet. She could barely get out of bed.  She was such a fighter and never complained or felt sorry for herself. During the first 3 cycles a new lump appeared in the tissue left from the original mastectomy.  The doctors were baffled the tumor returned despite being on so much chemo.  PT doesn’t respond to chemo so this time it was recommended she have radiation on the new lump.  Her perseverance paid off because her scans after 3 cycles showed her tumors had shrunk by 50% and the radiation was shrinking the lump. We rejoiced!! 

We made it through the holidays anxious for the chemo to be done in January so Regan could be scanned again and have the lump removed.  As soon as the chemo was complete, Regan started swelling like a balloon.  She reached a point where she could hardly breathe because she was full of so much fluid.  A friend had to call 911 because Regan couldn’t catch her breath.  She was taken to the hospital where they performed a thoracentesis.  2L of fluid were drawn off one lung and 1.5L off the other.  She went home after a few days only to return again with the same symptoms.  Regan never left the hospital again.  For 16 days she filled with fluid and had to have it drawn off, 5 times all together and 10L total.  They finally put a chest tube in for continuous drainage.  On Friday February 5 my sister was moved to ICU. Enough fluid was drained from her lungs for them to be able to do a CT.  Her lung tumors had grown and were taking over. By Sunday she was unresponsive and passed at 5:15am Monday, February 8.

My sister was, and is, my hero.  She fought this horrible cancer head on.  She had no intention of letting it take her down.  She was going to beat all the odds.  Every medical personnel that came in contact with her was amazed at her spirit and determination even at her weakest and sickest moments.  She touched everyone who came in contact with her.  Her story didn’t have the ending any of us hoped for and even now, a month later, I’m still in disbelief she’s gone.  I am so lucky to call her my sister. She’s gone but never forgotten. It has helped me reading all of your stories and I am cheering for all of you.  You are all fighters!