Survivor
Stephanie Shunick, Lockhart, Texas
When were you diagnosed? April, 1995, a month before my 48th birthday.
What type of breast cancer did you have and what stage were you diagnosed in? Infiltrating breast carcinoma with extensive vascular and lymphatic infiltration.
What was your first reaction when you were told that you had cancer? Shock as cancer is not in my family’s medical history, diabetes and heart disease I could understand, but not cancer. Because I try to live a lifestyle to protect me from diabetes and cancer, I think it’s helping me survive breast cancer.
How did you choose to share your diagnosis with friends and family? I told my daughter and son immediately what was going to be happening to me, then rest of my family and friends, and especially my priest. I was living in Kyle, Texas when diagnosed. Shock, sadness, then all kinds of help was offered. I had a super wonderful group of friends that supported me throughout the ordeal. My sister, a nurse practitioner, came to be with me after my surgery. She was amazed every time she turned around there was somebody coming to bring a meal, sit with me, drive us to a doctors appointment, anything and everything. They were and are a wonderful support group. I will be forever thankful for them.
What treatment options were available and where did you go for them? Bilateral mastectomy with reconstruction and chemotherapy.
Why was your specific path chosen? I was told that, although I had had mammograms every year since I was 40, most likely, this tumor was there before I was 40. The only reason it was found was the lump I felt was not tumor but swollen blood vessel that was feeding the tumor. With this information and the research I did on the subject it was possible second tumor could be in my right breast. So I was not shocked when surgeon recommended bilateral mastectomy. Luckily, the insurance company agreed. And with my extensive research, I decided on the Tram Flap Reconstruction as it used my own body tissue. Unfortunately, nowhere in my research did the word Lymph edema appear?
What were the side effects of your treatment? Immediate side effects was of course, pain, nausea and swelling. Once chemotherapy began pain, fatigue, nausea, chemo brain, depression, loss of hair, and anxiety.
How long did treatment take and where did you receive it at? My 9 hour surgery was the day after my birthday. My last chemo round was the beginning of December 1995. I was told I should be back to normal by December of the following year, 1996. Surgery was at Seton Hospital on 38th St. Chemotherapy was Texas Oncology in Austin. I was very fortunate to have Dr. Lawrence Tomas as my oncologist/hematologist. Question 12 my phone changed the name of my oncologist. His name Doctor Laurence Topaz.
How did you find the strength to go through the treatments? I had my daughter and son to raise, God on my side, my family and my wonderful friends supporting.
What kinds of things did you do to distract yourself when you were going through treatments? Prayer and more prayer. Plus all the activities when you have teenagers at home. There is really no way to be distracted from cancer with doctors appointments, chemotherapy, labs, X-rays and scans and therapies to fight cancer.
Did you need time off work and if so was your employer supportive of your journey?
Yes, I needed time off from work. I had a wonderful support of the staff at the Texas State Library and Archives Commission in Austin. Immediately after my surgery I had four weeks off sick leave. During chemotherapy, I would be out several days a week because of the fatigue and tiredness. Luckily, I had use of the employee pool of sick leave to cover all the time I needed.
And I had wonderful insurance.
What physical and emotional changes (like fatigue, “chemo brain,” or anxiety) did you experience and how did you manage them? Physical and emotional changes were pain, nausea and swelling. Once chemotherapy began pain, fatigue, nausea, chemo brain, depression, loss of hair, and anxiety. The biggest physical change was within a month of my surgery. I gained 54 pounds which the doctors told me I needed to go on a diet and exercise. During this time I’m vomiting and having diarrhea and being told, I’m eating too much! The painful pressure of the fluid against my internal organs was horrible. I thought I was going crazy since surgeons did not believe me. I kept asking if I had Lymph edema but they said no because your arm had very little swelling just your trunk (chest, back, stomach) therefore you’re eating too much. Chemotherapy Side effects ended once I completed chemotherapy. Lymph edema was the big stumbling block. I did see a therapist, but they only worked on my arm which did very little for my trunk area. Also given compression sleeve to wear.
When were you able to resume normal activities and were there any restrictions? Within a year I could return to my normal life and activities, except because of the Lymph edema I had to be careful lifting heavy items, avoid bug bites, scratches and cuts, blood pressure cuffs, blood draws and vaccines, and over use of my left arm. During that time, I’m also trying to find out why I have all this extra painful weight. I felt like I was living in the middle of a water balloon.
What resources, such as support groups were most helpful to you and your family?
The Breast Cancer Resource Center was brand new at that time in Austin. I was able to attend few of their meetings and learned more about Lymph edema. I was able to locate Therapist who had training In moving lymphatic fluid. But they only worked on my arm. Eight years later, As a Navy Veteran, I was able to receive treatment through the VA clinic in Austin. I was finally diagnosed with Lymph edema in my trunk area and with that began a wonderful loss 50+ pounds with use therapy, Compression Garments to wear every day and Flexitouch Pump that I use at night to help move and drain the fluid out of my body.
What follow-up tests are needed, and how often? I visit my oncologist once a year for chest x-ray and breast cancer marker blood tests. I also have a mammogram, but I do not rely on them as the cancer was not found with a mammogram.
What symptoms should you watch for that could indicate the cancer is returning? Lumps that I find on my body that might be an indication of a swollen lymph node or blood vessel. I rely on the breast cancer marker, blood test.
What can you do to stay healthy and decrease the risk of recurrence? I follow up with yearly doctor appointments and try-to follow a healthy diet and lifestyle.
What long-term health issues, or late effects, should you watch for? My long-term health issue is Lymph edema. I will be living with that for the rest of my life and it’s something I am aware of from the time I get up in the morning and put on my compression garments until I take them off and use my Flexitouch Pump to reduce the fluid in my body before I go to bed.
What is most important to you now that you are living with cancer?
I thank God every day that I can enjoy life with family and friends and that I have the resources, the knowledge, and good health insurance to cover all my expenses.
What did friends or family members do or say that meant the most to you?
They are understanding of my limitations.
What is a typical day like now? My days are not normal to me. When I travel, I have an extra suitcase, that my carries my Compression Garments, and Flexitouch Pump. I have gone to Iceland, the Middle East, road-trips throughout the United States. It’s a pain in the butt, but if I want a healthy life they come with me. So yes, my life is not normal.
What’s the most significant change you’ve noticed in yourself? I have more patience and when I feel like there’s something else that’s needed. I’ll keep looking and researching. Congress passed the Lymph edema Treatment Act effective January 1, 2024. The law forced Medicare to pay for Lymph edema treatment and Compression Garments. Since insurance companies tend to follow the Medicare guidelines it also makes it easier for anyone receiving Lymph edema treatment through their insurance companies.
What advice would you give to someone who is just starting their breast cancer journey? Ask for prayers and more prayers, and when your family and friends offer support accept it all because it’s their way of loving you and wanting to help and you’ll be so grateful to have them in your lives. Research and more research on the type of cancer you have and the types of options for treatment. After 30 years, options and treatments are so much different from what I experienced. The one thing that is the same is No matter our age, we all want to survive and enjoy life.
I consider my life an adventure.
