Sisters4Prevention Breast Cancer Stories and Survival
Since my diagnosis fourteen years ago, I have been dedicated to researching lifestyle changes and supporting clinical research to achieve the prevention of breast cancer. My goal is to raise awareness of the need for research funding for the primary prevention of women's cancers and to share information to help those facing this journey. My posts are educational and include my journey with bilateral breast cancer and my year of treatment including a double mastectomy and reconstruction. I have been a breast cancer advocate since 2010 and have served on panels at the department of defense breast cancer funding review programs. My website shares all the information I have collected and verified from long term survivors and medical evidence. I am not a medical professional, simply a teacher who hopes to make a difference by sharing information. I presently serve as one of three breast cancer advocates on the pending clinical trial under the direction of Dr. Vincent Tuohy at the Cleveland clinic to prevent the recurrence of triple negative breast cancer, the most lethal form of the disease began in the Fall of in 2021.I am a graduate of the National Breast Cancer Coalition's Project LEAD and have lobbied Congress for additional funds for prevention clinical trials for breast and ovarian cancers. In 2022, I was invited to be a Komen Advocate in Science. Stay tuned...
Sisters4Prevention Breast Cancer Stories and Survival
In the Rearview Mirror: Post Mastectomy Body Image and Challenges
In the rearview mirror…What I wish I had known about post mastectomy challenges.
When you are diagnosed with breast cancer, what’s probably foremost in your mind is to expedite surgery and treatment options to rid your body of the cancer. In another blog, I talk about how to prepare for a mastectomy in a practical way by getting the supplies you will need for physical recovery. What I didn’t discuss in that podcast, and what is most often not discussed, was how I would emotionally feel about the loss of my breasts. In my book, A Teacher’s Journey…What Breast Cancer Taught Me, I recall the morning of my mastectomy when I looked in the hotel mirror after showering. I felt the need to verbally say goodbye to my breasts.
Suddenly, I was filled with emotion and terror with visions of how I would look when they were gone. Not that they were great, mind you, I had nursed both my sons, and they were fifty-three years old and saggy. Doubts surfaced and I thought do I really know what I’m doing? I then burst into tears. My husband John, always my rock, hugged me and reassured me it would all be ok. After taking a Lorazepam that my surgeon had prescribed to settle my nerves, I felt better and ready to go. Well, did I really have a choice anyway?
No matter how you feel about your breasts, whether they are too small, too saggy or too large, you WILL grieve them. They are part of you. They are part of your femininity, sexuality and a large part of love making. You have a history together…which are now only memories. I had been told that I could possibly have some minor sensation after recovery, but there were no guarantees. My mastectomy was a skin sparing with expanders placed during surgery, but my nipples would not be spared. Since I had extensive LCIS and DCIS, my medical team could not assure me there weren’t cancer cells in the nipples. At this point, there was no sense taking a chance.
Although I was resolute in my decision, and certain it was the right choice given the information and options at hand, I was still tormented. That fateful morning in the hotel before leaving for the hospital when I cried, it was a foreshadowing for all the tears I would shed in the coming months.
When I first woke after surgery, there were ace bandages wrapped tightly around my chest. The pressure was intense and I thought it was from these bandages. The reality was it was the expanders. Nothing can prepare you for the “iron bra” feeling of expanders. They are extremely uncomfortable and getting used to them is a huge part of the first few months of healing. They are hard, immoveable, and unforgiving when attempting to get comfortable for sleep.
Many of my breast cancer friends, were able to choose DIEP flap reconstruction. This was not an option for me with the plastic surgeon I selected. Her expertise was limited to using the stomach area for the tissue needed. I didn’t have enough tissue available in that area. What I wish I had known is that there are specialized surgeons that are trained to harvest tissue from other areas such as the buttocks, thighs or hips (I would have loved to use that area). This may have involved travel for this expertise, but I would have SO done that to have natural tissue as my new breasts in lieu of implants.
Although I was so fortunate as to not require chemo due to my low oncotype score, I was not prepared that the healing process and completion of the reconstruction would require a long twelve months of procedures, check-ups, surgeries and mental coping. I used yoga, meditation, counseling, and walking to decompress, but I wish I had been more mentally prepared. Most medical teams, or at least mine only volunteered information in small doses. If you don’t ask a lot of questions