This is not my story, but that of a woman I met in an online support group. No names are being used(that is how she wanted me to do it), just her story. I am telling it to you as she has conveyed it to me.
At the beginning of April 2016, she had her yearly mammogram. Had to go back twice (mind you, it took 12 weeks before she got a letter explaining she needed a second mammogram, then six weeks to get an appointment. Then put on repeat two more times) and almost a year before her doctor would ordered a biopsy. And when all was said and done with the testing, she had three tumors. Two on the inside right breast and one on the inside of her left breast at cleavage edge.
Like myself, she chose to have a bilateral mastectomy. Tumors were 1.2mm, 1.6mm and 1.9mm is size, all being considered stage 1. No chemo, no radiation…Tamoxifen was their drug of choice for her.
She had no issue with Tamoxifen. Once or twice a day she had a hot flash. No other side effects. She was so happy not to be one of those women (like me) who had multiple sides effects that put a damper in our quality of life
After two years, she started feeling a pulling sensation in chest. But just blew it off as nothing. About two or three months later she noticed an area of thickening just under her mastectomy scar. And when she finally called her Oncologist, she felt nodules under the skin of your chest wall during and exam.
She had a chest wall recurrence.
What is a chest wall recurrence? It’s a recurrence which may involve skin, muscle, and fascia beneath the site of the original breast tumor, as well as lymph nodes. Her chest wall recurrence was isolated, and referred to as a non-metastatic breast cancer recurrence. She was told that around 5% of women who have had a mastectomy will have a regional recurrence over the next 10 years.
It can be incredibly confusing to research chest wall recurrence. What statistics are right? Why do the treatments seem to contradict each other? For the purposes of this blog, we are talking about women who have had a mastectomy. If cancer recurs in the breast after a lumpectomy, that is fairly different.
Back to the story…
The nodules being felt at touch, a biopsy was done to determine if it was a breast recurrence or not. It was positive, and her oncologists repeated tests to see if it is ER/PR+, or HER2+.
You may be wondering why they would test for that again after this were already tested with her original diagnosis, but in a recurrence, the receptor status of the cancer cells can change, especially if it has been more than a year or two since your mastectomy. In other words, if you originally had a breast cancer tumor that was estrogen receptor positive, your tumor cells may have changed and become estrogen receptor negative. Medically, this is referred to as “discordance of a tumor.” It is because of discordance that this is done, and can have a great impact on choosing the best treatment options.
Back to her journey…
The first step was to determine if her chest wall recurrence was an isolated recurrence, or if additional areas of recurrence, especially distant metastases are present. A workup for staging was done which included a PET scan looking for other regions of spread in the body.
She was diagnosed as Isolated Chest Wall Metastases (Non-Metastatic Recurrence). Which means there is no evidence of distant metastatic disease on testing (no evidence of cancer that has spread to the bones, lungs, liver, brain, or other regions), local treatment to remove the recurrence is the goal of treatment. Since a tumor that has spread to the chest wall has also essentially “declared its intent” to spread to other regions of the body, systemic treatments are also needed.
As with an original diagnosis of breast cancer, treatment of a recurrence usually combines a few treatments. Last time she got a “free pass” because if her OncoType score being below 10…this time, no pass.
Her treatments included chemotherapy because it has been shown to decrease the chance that cancer will recur. Radiation Therapy because it was not used at the time the original cancer was treated because she had a mastectomy, but this time she was having it to make sure all cancer cells are treated (cells that cannot be seen on imaging but are assumed to possibly be present. Surgery to remove the area of recurrence and her breast implants.
Being as her recurrence was ER/PR+, hormonal therapy will be continued. But this time she is taking an aromatase inhibitor Arimidex (anastrozole). This change in meds is made when a recurrence occurs when you are on a hormonal therapy, the tumor may have become resistant. A different medication may be recommended.
As she put it to me, “God has graced her with another pass.” After treatment, she is on the road to recovery and living her life as she did before…less boobs or foobies this time. And her husband stood by her decision to remove the implants and replace with a fat transfer later on, saying “as long as I have you, I have everything I need!”
I read the overall 10-year survival rate for breast cancer with a chest wall recurrence is around 50%, but that may be changing now with better treatment options. The amount of time that elapsed between the initial breast cancer and the recurrence plays an important role in survival. With those who have a chest wall recurrence within the first 3 years of diagnosis have around 30%, whereas those who have a recurrence after the 3 year mark, the survival rate may be 70% or higher.
If your breast cancer comes back, it can be even more frightening that when you are first diagnosed. Part of this is that 27% of chest wall recurrences are associated with distant metastases (metastatic breast cancer) which means that the cancer is no longer curable. Yet, even if a cancer is not curable, it is still very treatable, and several options exist.
For those who have an isolated locoregional recurrence, full thickness removal of the tumor, some chemo and new hormonal theropy may result in long-term survival for many who are candidates for this treatment.