MY JOURNEY - FA, BLPT, AND RECURRENCES
Nov 27, 2016
By: Marlene
in 1996 my first tumour was discovered while showering. It continued to grow quickly while sought treatment. Lumpectomy was done and pathology indicated a Fibroadenoma. In 1999 I had a recurrence same spot. It grew faster than the last. Surgeon suspected phyllodes tumour but after another lumpectomy and margins same pathologist indicated Fibroadenoma. 2012 another recurrence same site and same pattern. Watch and wait they told me. In 2014 after a great deal of pain with growth and verfified increased growth I demanded a biopsy. The results confirmed Phyllodes tumour Borderline (BLPT). Review of past pathology suggested misdiagnosis. Lumpectomy and then another surgery weeks later for wide margins (partial mastecotomy and removed the chestwall fascia for testing). New Surgeon but my past Surgeon attended :). I had a rough time recovering with a great deal nerve pain. Following I took 25 rounds of radiation and then launched the journey to recover usage of my arm and shoulder. Chronic fatigue continues well into 2016 but I have been working full time since September of 2015. I continue with physio therpay and massage therapy as well as a naturopath for wellness. One year post radiation another recurrence in the right breast (my fourth one) small and biopsy indicated FA. Three months later a new FA in the left breast (no biopsy). Being monitored with annual mammogram and bi-annual ultrasound. Option forward if growth is mastectomy but given reserach I am not prepared for that route yet and if the time comes may opt for another partial if I have enough tissue. It has been a difficult journey but one that is empowered now due to reserach and education - learning from others and making sure I have a great team of medical folks (oncologist was not a good experience so ceased that relationship). It is frustrating that a condition from the 1800's is still unresolved. The lack of reserach and lumping into breast cancer when we are unique in care and monitoring is another frustration. Where I live routine monitoring does not exist - it is by the grace of an excellent compassionate surgeon that I am being closely monitored and have continued access to a breast health centre. My advise is educate yourself and ALWAYS ask for copies of your medical reports and keep them safe to ensure continuity of medical information for any forks in the wellness forward journey. Hang in there is my motto and take one day at a time and take charge of your health care, and push for treatment that you know exists.
Just an update 2021 Feb - last year my annual mammogram and ultrasound confirmed the FA in the right PT breast had disappeared and left a few spots of calcium. It shrivelled up. The left new FA first ever also disappeared. I continue to take loose green tea mixed in my regular daily pot of tea, and take vitamin D3 every day. Not sure if that is a cure but it is working for me and over 6 years clear other than these resolved FAs. Missing my frequent aqua fit classes and swimming (COVID closures) to keep the scar tissue from impacting chest and arm but doing exercises is working right now. Looking back when we were so excited to have 50 people on our new map and we are now over 800 - and our slower growth survey for stats that for the most part mirror big research study results. REMEMBER to always keep copies of your imaging, biopsy, surgery, and pathology reports - PT can lie dormant for a long time or reoccur quickly and having your history handy will help your medical practitioners. Keep the hope that some day there will be answers why and a cure. In solidarity with all the PT Warrior Women and Sisters.
