My Metastatic, Metaplastic Breast Cancer Story
Laura A. Houmes
Diagnosed 2012 age 47
Wife, Mother of 3
My breast cancer story started early March 2012 when I rolled over in the middle of a night and experienced pain in my right breast. I became more alarmed when I felt the firm lump. The following morning my GYN Nurse Practitioner sent me to have an ultrasound. The ultrasound was followed up with a biopsy. These original biopsy results lead me to the Sarcoma Clinic at Moffitt Cancer Center in Tampa, Florida. There, I was connected with the combined efforts of the most knowledgeable experts in the field of surgical oncology for sarcomas and breast cancers. Dr. Ricardo Gonzalez (Sarcoma) and Dr. John Kiluk (Breast) assisted in my surgical lumpectomy that resulted in pathological findings confirming Carcinosarcoma of the breast.
Moffitt Cancer Center is located on the west coast of Florida and was a taxing 3 hour drive for appointments. I was eventually connected with a local oncologist Dr. Lisa Duhaime for my future treatment planning. Like most others diagnosed with Metaplastic Breast Cancer, treatment plans parallel Triple Negative Beast Cancer protocols. I have attached my timeline of treatments that I underwent and prefer not to repeat here.
What I should focus on is how fortunate I was to have my treatment plans from the most diligent oncologists that I was able to connect with in Florida. These experts mentioned above valued follow-up scanning and supported monitoring disease early enough to allow to swiftly shift treatment options. We watched a 3mm left lung “spot” on my January 2014 CT scan double in size by February 2014.
Due to the growing lung nodule and a questionable 2nd area of concern in the left lung a biopsy became more necessary. Lung biopsies are scary and mine resulted in a collapsed left lung. I will never forget that excruciating painful experience when the radiologist stabbed the tube through my left chest directing it into my left lung. Pathology from the biopsy confirmed metastatic disease and in April of 2014 I had a lung resection of the growing nodule and the questionable spot that ended up benign.
Foundation One advanced genomic tumor testing identified alterations from my lung resection that led me to clinical trials (precision medicine), targeting these alterations. Stage 1 Clinical Trials now became my reality. I’m now a guinea pig! The Initial trial, LDE225 and BKM120 lasted almost 2 months before my elevated liver enzymes resulted in me being removed from this trial. The reality of my situation was beginning to hit hard and place a toll on me. I was not ready to become a victim and die from cancer. I had so much to live for and my family needs me. This was the driving force that guided me to fight mode. I needed to seek out support and options from the largest most respected research cancer facility, MD Anderson in Houston, Texas.
My initial appointment was with Dr. Stacy Moulder in the Breast Cancer Clinic and my PIK3CA mutation qualified me for the DAE clinical trial at MDA. Dr. Filip Janku in the Department of Investigational Cancer Therapeutics became my treating research oncologist. Details of the 2 years plus of traveling to Houston from Central Florida for 18 rounds of Doxil, Avastin and Afinitor are documented on my attached timeline. It was quite a rollercoaster ride and I am forever grateful to be here today to tell my story.
I owe a debt of gratitude to the oncology experts mentioned above that helped with my treatments. Taking charge and becoming my own best advocate was also vital. Metaplastic Breast Cancer is an aggressive beast and those diagnosed with this disease need to move quickly to treatments. Please visit: https://www.mpbcalliance.org/information/14-ways-to-advocate-for-yourself-as-a-metaplastic-breast-cancer-patient/
Follow up scanning is controversial and in my personal situation monitoring disease is why I am on maintenance precision medicine-targeted therapy and enjoying no evidence of disease today.
These days I enjoy the best most supportive community of family and friends anyone could wish to have in their life. Since my initial diagnosis I have watched my oldest son graduate as a CPA and get married. My daughter (twin B) became a Physician Assistant. Today she is also married and now is expecting her first child. As I am writing this, I am with my daughter 35 weeks along and so thankful to be here to support her at her time of need. My future focuses on helping my son (twin A) find supported employment.
We all experience challenges in life. I hope my story is a continued success story for MANY years to come. The Afinitor does take a toll on my energy level. I will continue to balance this insult with healthy habits and nutrition. Finding enjoyment as much as possible and giving back to those who need support helps me stay engaged in pay it forward.
In 2016/2017 Susan D. Oran and I Incorporated and The MpBC Global Alliance, Inc. officially became a nonprofit organization. Our combined efforts are bringing more attention to this rare and aggressive breast cancer. We are focused on bringing more attention and research to oncology experts. For more information please visit us at www.mpbcalliance.org
Metaplastic Breast Cancer
Timeline of Treatments and Notes
4/2012 Diagnosed High Grade Breast Sarcoma
5/2012 Right breast lumpectomy
5/2012 Re-diagnosed Carcinosarcoma – 3cm mass, nodes clear
7/2012 Local Oncologist AC x 4 – with Neulasta shots
9/2012 Taxol x 4 – with Neulasta shots
12/2012 Radiation 35 days with 5 boosters
1/2014 Suspicious left lung mets
2/2014 Ct scans shows nodule has doubled
4/2014 Lung Resection of 1 benign nodule and 1- 2.5cm mass with clear margins
6/2014 New left lobe 6mm nodular foci
Treatment now focused on moving towards clinical trials at Moffitt Tampa
6/2014 Nodule now 1cm and several sub-centimeter non-calcified nodules also present
8/2014 No tumor growth but trial suspended due to elevated liver levels
9/2014 Moved treatments to MDA Houston – DAE trial
10/13/14 #1 DAE IV Doxil, Avastin and 7.5mg Afinitor pill orally daily
11/03/14 #2 DAE IV Doxil, Avastin and ongoing Afinitor daily
11/24/14 CT scan shows 40% decrease in lung nodules but side effects from treatment hitting hard so, treatment break and possible gall-bladder attacks—NO Chemo— holding due to mouth sores
12/4/14 NO Chemo– holding due to Pneumonia (flew into Houston went right to ER at MDA)
12/11/14 NO Chemo– holding due to Liver #’s
12/22/14 Eyebrows pretty much gone… have rest of hair! (Weird!)
***ongoing attacks which I considered to be gallbladder attacks BUT the experts insisted it to be my liver….?????….. Continuous ER visits and tests with no explanation as to painful attacks***
***noticed Eyelashes falling out***
1/8/15 #3 DAE Chemo Doxil 25mg (Decreased from 30mg), Avastin 15mg (No Decrease) Afinitor 5mg (Decreased from 7.5MG)
***other noticable side effects from treatment- slight red puffy eyes, headaches, dry mouth, slight nose bleeds and high blood pressure***
1/14/2015 ***Eyelashes mostly gone*** Started Valtrex for mouthsores (my opinion-did not help)
1/29/2015 #4 DAE ***eyebrows returning***
2/19/2015 #5 DAE ***ongoing questionable gallbladder attacks and hand/foot syndrome which I did find Biotin Emulsion to help***
3/12/2015 NO Chemo due to low WBC and mouth sores, Switched BP meds and anxiety concerns.
3/26/15 #6 DAE ***still ongoing questionable gallbladder attacks***
4/16/2015 #7 DAE ***Nodules still shrinking
4/30/2015 ***bladder infections beginning*** started taking cranberry pills
5/7/2015 #8 DAE met with Thoracic Surgeon to see if he could remove remaining lung spots
5/27/2015 No Chemo–***due to massive Gallbladder attack and spent approximately a week at MDA until they realized I was having gallbladder attacks- ERCP verified***
6/8/2015 Gallbladder Removed ***OFF ALL MEDS including chemo’s***
7/9/2015 #9 DAE ***ongoing UTI’s- worsening***
7/30/2015 #10 DAE
8/2015 Prepping for lung surgery ***OFF ALL MEDS including chemo’s***
9/16/2015 ***Lung surgery cancelled due to surgeons refusal to do surgery- not enough cancer left***
9/17/2015 #11 DAE ***ongoing UTI’s***
10/8/2015 #12 DAE
10/29/2015 #13 DAE
11/19/2015 #14 DAE
12/10/2015 #15 DAE ***ongoing UTI’s***
1/7/2016 #16 DAE
1/28/2016 #17 DAE
2/18/2016 #18 DAE
***Did 18 rounds of IV Doxil and IV Avastin with Afinitor daily
***Lost over 30 pounds
***Did not take Neulasta shots through DAE to avoid more side effects. Started to exercise (fast walking) before blood draws. Exercise promotes/supports an increase in white blood counts.
***Ct scans often to monitor small nodules that keep appearing and disappearing
10/2017 ***Afinitor dosage decreased to 2.5 due to liver numbers not normalizing
12/2017 ***Scans finally moved out to every 6 months
***Bloodwork every 3 months
4/2020 Still Here!!!