Managing Chemotherapy induced peripheral Neuropathy after cancer treatment.
My relationship with Breastcancer.org started when I was first diagnosed with breast cancer in March of 2009.
I was the first person in my immediate family to be diagnosed with breast cancer, so to say I did not see it coming could not be truer. I did not have a grandmother, mother, aunt, or cousin who had breast cancer, so it was not something I was ever worried about or considered like many women with family history are concerned about.
Doctors and researcher are working to refine cancer treatments, but they still have side effects. Chemotherapy is used to kill cancer cells, but some chemotherapeutic agents can also affect the nerves that connect the spinal cord to muscles and skin. This condition is known as peripheral neuropathy.
I was doing a lot of “googling” looking for information when I found the site.
The time from biopsy and first learning you have cancer and then coming up with the treatment plan is the most stressful time. Breastcancer.org members were there for me in that trying and emotional time in a way no one else could be even if they tried.
What I really liked about breastcancer.org was the layout of the site. They had specialized areas (topics) where you could read and post based on the type of cancer you have, the stage of your cancer, and many other topics.
Types of Breast Cancer
There are many different types of breast cancer defined by where in the breast they begin to grow, how much they have grown or spread, and certain features that influence how the cancer behaves. The type of breast cancer you’ve been diagnosed with will help you and your doctor decide on the best treatment options for you.
• Invasive breast cancer.
•Non-invasive breast cancer
• Cancerous phyllodes tumors of the breast
I ended up meeting a woman who was local who was a bit ahead of me in her treatments. She had a different diagnosis than I did. I was ER+/PR+ HER2- Stage 3 and BRCA2+ She was Triple Negative Stage 1. We were having similar treatment in that we both had neoadjuvant chemotherapy and we both had Adriamycin and Taxol, and we were both getting double mastectomies.
She became my peer navigator of sorts since she was a few weeks ahead of me. She could tell me what I might expect and took the fear of the unknown away.
Another part of breastcancer.org that was pivotal to me in my cancer journey was the chemo starter’s groups every month. The support I received there was outstanding. It was the place where I felt the most understood and safe. We could all vent, cry, talk about fears, treatments, side effects, relationships, everything. We stayed in contact for a solid 8 years and over the past several years we had dwindled to only about 5 of us. We lost some members to their disease, and in many cases, we just moved on with life and perhaps wanted to leave cancer in the rearview mirror.
When I began my reconstruction journey a couple years later, breastcancer.org again came to the rescue. You must wait about a year after radiation to start reconstruction. My reconstruction journey was probably more difficult in some ways than my cancer journey. I knew the statistics about implants in radiated tissue, but I had to balance the options with the recovery time and impact on my lifestyle. I had an expander for almost a year and loved to swap stories with other ladies and their expander trial and tribulations on breastcancer.org. I did try implants not once, but twice and lost them to infection twice. The second time we could not get the infection under control, and I had emergency surgery that left me disfigured on the radiated side. I had a very large open wound that could not even be sutured shut. That was my lowest moment in my overall cancer journey. I was defeated at that time. I had a great attitude through all the other ups and downs, but this just knocked me to my core.
Again breastcancer.org to the rescue. I had done a great deal of reading about others reconstruction challenges and the great success many members had at the Center for Restorative Breast Surgery. I would have never found them if it had not been for breastcancer.org and they did in fact change my life and repair my chest.
I had a recurrence scare in 2017 and thought I had metastatic disease and again I returned to the support of the wonderful members at breastcancer.org.
I was lucky 5 years ago as it turned out not to be metastatic disease. Over the years I have had many women reach out to me when they either think they may have breast cancer or have been diagnosed and I always tell them to go to breastcancer.org.
I live in constant gratitude for my cancer journey because it gave the dream and vision to help others and start a company that creates products to lessen the pain, stress, and collateral damage of the treatments that save our lives.
I might not be sitting here at 13 years cancer free had I not had such tremendous emotional support from the membership. A Chinese proverb says, “A journey of a thousand miles begins with a single step” Cancer felt like a thousand mile journey, and I feel breastcancer.org walked with me every step, I was never alone, for that I am forever grateful!