Janet Lindell, a fellow Edinboro University alumnus, joined me on this week’s episode to share her story behind the pink ribbon. She was diagnosed with stage 3C, infiltrating ductal carcinoma in November 2010 at the age of 35. Janet shared how she found the cancer, her course of treatment following her initial diagnosis, getting the news that the cancer had spread to her bones and now her liver, going through years of endless treatments, and living with metastatic breast cancer.
Janet Lindell was 35 years old when she noticed some puckering in her right breast behind her nipple. She didn’t think much of it because her mother had cysts that needed to be drained and Janet thought maybe she had cysts. She decided to wait a month but in November, after meeting her insurance deductible, she decided to have it checked out. She went to her primary care physician and was referred for a mammogram and sonogram. She was told by the radiologist that it was 99% likely that she had fibroadenoma and that she could wait 6 months. Her sister, a nurse, felt it and told Janet that she needed to have a biopsy.
At the recommendation of her sister, Janet had a biopsy. She recalls that the first needle broke. Following the biopsy, she was told that she would receive a phone call within 2 days with the results. When she did not hear from anyone in the 2 days, she decided to call and was told that the doctor needed to call her. She knew that the news was not good. The doctor called and told Janet that while it was not typical practice to share this kind of news over the phone, she did in fact have breast cancer. Janet was shocked. She called her husband to come home from work and called her mom as well.
Janet feels like she was dismissed by the radiologist who did the mammogram and sonogram because she was a young, healthy woman who exercised and at well, and had few risk factors. There was no family history of breast cancer with the exception of an aunt who was diagnosed in her 40s. Genetic testing confirmed that Janet did not carry the gene mutation.
Janet underwent a bilateral mastectomy 2 months later. The tumor was 2.2 cm and had spread to 5 of 12 lymph nodes. She opted for reconstruction and had expanders placed at the time of surgery. She had the expanders in place for over a year. She started chemotherapy after surgery and then radiation followed chemotherapy. By September 2011, she remembers feeling completely wiped out. The radiation was exhausting. While typical radiation only lasts several minutes, Janet had radiation that lasted for 40 minutes and had to have her head taped to the side.
Since the cancer was ER/PR positive, Janet opted to have a complete hysterectomy/oophorectomy. She thought that if she was aggressive in her approach and had everything removed, she would be fine but in 2013, Janet found out that the cancer had spread to her bones. She was feeling great and had not noticed anything. During a routine check-up, her tumor markers were noted to be over the threshold. Her doctor ordered a bone scan and found a spot in the hip joint of her left leg that was confirmed to be metastatic breast cancer.
Janet was told she had to stop walking immediately and needed to start using crutches. She admits that she was not following the doctor’s ordered. Two days after the diagnosis, she was dancing at her brother’s wedding but looks back on that time and is thankful that she did not break any bones. After being yelled at and told that any step could cause a break in her bones, Janet went on crutches. She had surgery to place a rod in her femur and a screw in her hip joint. Two weeks later, she returned to work. Janet shared that she suffered from lymphedema but spinning helped her with not only the lymphedema but also joint pain caused by the medication.
She underwent 10 doses of radiation and was placed on oral chemotherapy. She experienced terrible mouth sores and could not eat. She was placed on a lower dose. Janet did well on the chemotherapy but four years later, it was discovered that she had cancer spots in her pelvis right hip, acetabulum, and sacrum. Janet was disappointed that the cancer had spread even more because she changed her diet and felt like she was doing all the right things. She did do better on oral chemotherapy for a longer period of time than what is typical.
In February 2020, a new spot was discovered on Janet’s liver. She shared that she has cancer throughout her bones and has had multiple spots radiated. Currently, she is having the most trouble with her spine and her neck. She has 2 fractured vertebrae in her neck and 2 compressed vertebrae in her spine. She has been dealing with pain since March or April.
Janet shared that she has been on all of the chemotherapies except one. The cancer cells seem to find a way around the chemotherapy. She was recently placed on new oral chemotherapy and has seen a drastic decrease in the tumor markers. She continues to be closely monitored by her doctor, who she sees once a month and had PET scans every 3 months.
Janet stressed the importance of moving our bodies. She has noticed that when she does not move her body, she does not feel as good. She continues to work full-time as a special education aide. There was some hesitation from the physician assistant when Janet shared that she would be returning to work this school year but Janet feels like her qualify of life would diminish if she was not able to work. She loves what she does.
Janet also shared that she has found amazing support through hospice and palliative care. She never wanted to seek support through hospice because it was very scary but has had a positive experience with pain management. She encourages others to seek out the same support if anyone is struggling with pain management.
Another important thing Janet noted is that it is important to have a doctor that is supportive. She shared that she briefly changed her oncologist out of convenience but was a wreck because the doctor often yelled at her and told her she was going to die. She often sobbed and her mom would sob as well. While Janet knew that she had extensive bone sites with cancer, the oncologist would bring up all positive negative side effects and told her she could be paralyzed and lose her teeth. Janet opted to return to her previous oncologist because as she stated, “Just because I am stage 4, it doesn’t mean I am done!”