My Daughter Needs a Mastectomy

I started this fundraiser to help my daughter Jessica offset some of the expenses associated with her surgery and a 3-month recovery period-most of which will need to be spent in California so that she remains near her surgeons. I know that many of her friends, family and colleagues have expressed interest in helping her in any way. If you feel moved to contribute, this fund will be used for medical bills, lodging, and travel expenses for her drive to and from California. Jessica will also need follow-up care and therapy, which is a significant part of making a full recovery from this unexpected bilateral mastectomy and reconstruction.

 

Jessica's Story

On November 15th, Jessica will undergo surgery to remove both breasts and begin a multi surgery reconstruction process. She has been having MRIs & Mammograms yearly since the age of 25, due to the significant family history of fatal breast cancers in her family. Unfortunately, the images from her most recent MRI showed abnormalities in both breasts. Her providers at Johns Hopkins & UMMCs High Risk Breast Cancer Clinic hit the ground running and prescribed 3 MRI guided biopsies. The analysis of the tissue obtained during those biopsies was not conclusive - which meant that the tissue was abnormal but cancer wasn't detected in the many samples taken during the biopsies. The medical recommendation was for complete removal of all the tissue in both breasts for further analysis.

 

Relentless Pursuit

The process for getting the above tests would seem fairly straight forward, but these tests were beyond those that are made for a typical yearly mammogram. Due to Jessica's young age and tissue the biopsies were not able to be collected under much less involved ultrasound. Her doctors wanted the biopsies immediately but imaging centers don't have a lot of availability for the type of MRI guided procedure she needed and getting timely tests seemed to be bleak. Rather than accept appointments that were over a month in the future, Jessica called approximately 8 centers daily, to see if any spaces had opened up. She spoke to them so much, that when we went to her final biopsy, the breast biopsy coordinator heard her name during check in and was happy to meet her in person. After all of their conversations, they practically knew each other without ever having met. Jessica often commented on how fortunate she felt to work in the healthcare industry and be familiar with how important care coordination and self advocacy are.

 

Sensation Preserving Mastectomy at 32

What is that? I never knew that during a mastectomy the nerves cannot be spared - resulting in the loss of touch. Women can no longer feel the warmth of a hug from a baby, or the touch of clothing on the skin, even avoiding injury can become difficult without the sense of touch and temperature. While advocating for timely appointments, Jessica started research to learn more and hopefully locate surgeons that were using the most advanced techniques. Her own research led her to an oncologic/plastics/nerve surgery team who have pioneered a sensation-preserving mastectomy procedure. Dr. Anne Peled & her husband Dr. Ziv Peled located in California. Initially she wasn't able to get a consult until March, 6-months away. Once she submitted her case file with scans, biopsy results and genetic information and they moved her to an appointment within the same week. That led to an on-line consultation and thankfully they determined that she was a good candidate for the procedure and was accepted as a patient for surgery in one month.

Recovery 
If all goes well, Jessica will be in the hospital overnight (24 hours), in 2-3 weeks her drains can come out, and then healing for 6-8 weeks in San Francisco.  She needs to stay close to the doctors who performed the surgery because they are the most familiar with how her healing should progress and can address any setbacks should they arise.  She will not be able to lift her elbows above her chest, or engage her pec muscles. This is because the Allograft (donor/engineered tissue) that will be used to hold her reconstruction together will be stitched to her muscle. A year from now, when she is fully healed she will have to make the trip to San Francisco again to hopefully complete her reconstruction with grafting to fix any animation deformities. Her husband and her dog will be with her the entire time and she feels so lucky to be having a surgical option that comes too late for so many with her same lifetime risk of cancer.  When she's well enough and is given the all-clear, the 3 of them will get back into the 2009 Hyundai Elantra and drive back to Maryland.