Written by, Joy Thorson

​I was happy to write a bit about my breast cancer journey, but I wasn’t sure what to include since it’s been a very long journey. So, I decided to focus on the most recent chapter, but I thought I should give you a bit of background first.

In October 1999 I was diagnosed with HER2-negative breast cancer. Within 3 days I had a single modified radical mastectomy and because of lymph node involvement I also had chemotherapy, radiation, followed by medication and no plan for reconstruction. In 2004, I was feeling good and decided to consider reconstruction. I hadn’t retained any extra skin at the time of my mastectomy, so I needed an “expander” implanted to encourage that skin to expand enough for the implant. This was a very difficult and painful process because that radiated skin did not want to expand. Then I received a silicone implant.

In March 2017 after multiple tests, I was given the news that I had metastatic breast cancer in a rib and a vertebra…certainly NOT what I expected to hear. I was devastated. After all these years that darn cancer decided to show up again!!!

As you know, Metastatic Breast Cancer is not curable and is considered Stage 4. In June of 2017, I began taking Kisqali, a CDK-inhibitor drug, that I take every day for 3 weeks, then get a week off and I would need to take this for the rest of my life. It seems to be doing its job keeping my cancer at bay as the last 5 PET scans (I have them twice a year) have basically been clear! Hallelujah!

Other than being a VERY expensive drug I am tolerating it very well. I was thrilled to be the recipient of BPT grant funds one year which helped to cover a couple of months of my Kisqali prescription. It is very hard for me to ask for help, but I was treated with great respect, kindness, and care from the BPT. Their scholarship program for financial assistance is a wonderful part of the BPT!

The past couple of years I have been experiencing extreme fatigue for unknown reasons. I’ve had blood tests and I learned that I am not anemic, my thyroid is under control, I do not have Lyme disease or lupus. The doctor told me I have “chronic fatigue”. It’s difficult to accept as I love being active and doing more than 1 or 2 things a day! One day I happened to watch a documentary about hip replacements and issues with the metal used causing cognitive challenges. I haven’t had a hip replacement, but it did cause me to start looking at complications caused by breast implants. I read more about Breast Implant Illness (BII) and learned that the top symptom is “chronic fatigue.” I began to research reliable websites and read about other symptoms, many of which I’m experiencing…hair loss, changes in skin, dry eyes, bone & joint pain, on and on. It was time to take the next step and speak with a breast surgeon about having the implant removed.

November of last year I met with Dr McMahon who then referred me to a plastic surgeon for further consultation. I saw Dr Barnard and he agreed that the implant was causing a lot of issues. While neither surgeon would say my symptoms would go away if I had the implant removed, I was confident that my quality of life would improve with it out of my body. I was also tired of trying to make my breasts be similar in size/shape and always worrying about breast cancer recurring, so I decided to have a mastectomy of the remaining breast.

On April 28, 2022, Dr Barnard and his team removed the breast implant, its capsule, and as much scar tissue as possible; then Dr McMahon and his team performed the mastectomy. I was excited and anxious at the same time! Now that I am about 3 months out from that surgery, I know it was absolutely the right decision for me. My quality of life has improved incredibly. My energy is returning, my pain and range of motion is improving with Physical Therapy (I believe everyone having surgery would benefit from PT), my hair stopped falling out, I feel like myself again! I am back to yoga and Zumba and my attitude regarding a healthy lifestyle has returned!

The most important “take-away” I want you to consider is that we must be our own advocate for ourselves and our bodies. You are the only one who really knows your body and when something doesn’t feel right, doesn’t make sense, or you don’t understand, ask questions! And do your research. Of course, it’s important to use reliable sources but gather as much information you can and ask questions. If I hadn’t pursued more information about breast implants and their complications, I would still be dealing with chronic fatigue and all the other health issues. Being advocates for our own health journey is a vital part of living each day to its fullest!

​I love life, I love my family, I love hearing each of your stories. I wish you all the very best in your journey and I hope you won’t be afraid to ask questions.

By Athena Puski, MS LGC
Licensed Genetic Counselor
Holden Comprehensive Cancer Center University of Iowa Hospitals and Clinics

You’ve probably heard of BRCA1 and BRCA2, or “the BRACA genes,” which increase the risk of getting breast and ovarian cancer. But have you heard of PALB2, CHEK2, or ATM? Many are surprised to learn there are 11 additional genes besides BRCA1 and BRCA2 that are known to increase the risk of getting breast cancer, and many more genes are still being researched for their possible association with hereditary breast cancer.

A mutation in any of these “other” genes increases the chance of getting breast cancer. Some increase the risk for breast cancer just a little bit, while others increase the risk a lot. These genes can also increase the chance of getting other cancers besides just breast cancer. For example, CHEK2 mutations slightly increase the risk for breast cancer and colon cancer, while PALB2 mutations slightly increase the risk for pancreatic cancer, ovarian cancer, and breast cancer.

Knowing if you have one of these genetic mutations can impact medical care for you and your family members. There are often steps that can be taken to detect cancer at an early and more-treatable stage, or even prevent cancer. How this is done depends on the specific gene in which there is a mutation. It may include screening for cancer more often, such as doing a mammogram and a breast MRI every year. Sometimes surgery can be used to prevent cancer, such as by removing the ovaries or both breasts. Medications can also sometimes be used to lower the chance of getting cancer. In some cases, targeted cancer treatments, such as PARP inhibitors, can be used as part of the treatment for breast cancer.

These hereditary causes of cancer are not common—only about 10% of all breast cancers are estimated to be due to an inherited genetic mutation (about half of which are due to a mutation in a gene other than BRCA1 or BRCA2). Those with a genetic mutation often (but not always) have a strong family history of cancer. Some things that can indicate you might have a hereditary breast cancer condition and may want to consider genetic testing include the following:
• You or someone in your family had breast cancer before the age of 45
• You or someone in your family has had triplenegative breast cancer, ovarian cancer, pancreatic cancer, male breast cancer, or metastatic prostate cancer
• At least three members of your family have had breast cancer or prostate cancer at any age

If genetic testing is something you are interested in learning more about, talk with your doctor or a genetic counselor. Even if you had BRCA1 and BRCA2 genetic testing in the past, additional testing for mutations in other genes may be appropriate. This type of genetic testing is called “update testing” or “panel testing.”

Genetic testing can usually be done with a blood sample or sometimes a saliva sample. Nowadays, insurance coverage for genetic testing is often very good. However, even if insurance won’t cover the cost of testing for you, there are routes available to get genetic testing for about $250, even without insurance. Genetic testing isn’t right for everyone, though, and that’s okay. It is scary to learn you and family members have an increased chance of getting cancer; not everyone is ready for this information. Others may welcome the information learned from genetic testing so they can take proactive steps against their cancer risk. A genetic counselor and your doctor can help you determine what is best for you. FORCE (https://www.facingourrisk.org/) is also great resource to learn more about genetic testing and genetic mutations.

Whether or not you decide if genetic testing is right for you, knowing your family history is key. The upcoming holidays are a great time to talk with family members and gather their medical history. Here is a guide to help you through the process about asking family members about their health history: guide-tofamily-health-history.pdf (geisinger.org).