What I Wish I Knew: Deciding to get a port
Breast cancer is one of the most commonly diagnosed cancers in American women. A diagnosis can leave you feeling unprepared for health and treatment decisions you have to make. It can also put unexpected stress on your everyday life, your family, and your job.
At LBBC, we know one of the best ways to learn about living with breast cancer is by hearing from others who have been there. This blog is part of a series called What I Wish I Knew, which features people diagnosed with early-stage breast cancer in the past who want to share their knowledge with those who are newly diagnosed. What I Wish I Knew will update once a month.
My name is Izabela and on August 17, 2016, my comfy and active life turned upside down. I heard the words that no one wishes to hear from their doctor: “You have a breast cancer.” This happened just a week after I turned 33!
A few years earlier, my aunt and my sister were also diagnosed with breast cancer. Even though the genetic test came back negative, I still got cancer. At that time, I knew there was no tiptoeing around it and that it was best to go aggressive and do a double mastectomy.
Due to my diagnosis — estrogen receptor- and HER2–positive — and the size of the tumor I knew that I would need chemotherapy. My doctors told me that my veins looked great and that I wouldn’t need a chemo port, a vein-access device that chemotherapy medications can be delivered into instead of a vein, eliminating the need for needle sticks. I felt relieved. Putting in a port would have meant another surgery and I was concerned that it would be uncomfortable. Plus, even when not using it, I would still have to go to the infusion center to have it flushed.
After waking up from breast surgery, I found out that my surgeon had to remove lymph nodes from my left armpit. One of my sentinel nodes came back positive for traces of cancer, a test that can only be done during the surgery. Because they removed those lymph nodes, they couldn’t use my left arm for needles. Even the blood pressure test could not be performed on this arm. Using my left arm would put me at higher risk for lymphedema.
Just like that, I went from having two arms that could be used for infusions to only one. My chemotherapy included four rounds of AC — adriamycin (Doxorubicin) and cyclophosphamide (Cytoxan — 12 rounds of paclitaxel (Taxol), and 17 rounds of trastuzumab (Herceptin) and pertuzumab (Perjeta). Additionally, every 3 months, I needed an echocardiogram that requires a dye injection, to see how my heart is working and dealing with chemo. During that time, I had countless blood tests done. All of that from my right arm only.
At the beginning, my amazing infusion nurse was able to access my veins without any issues, but towards the end, she was struggling to find a “cooperative” vein that hadn’t collapsed yet and would handle the injection. Often, it took several minutes and a few tricks to find one.
I was able to finish my treatment but I really wished I had a port. It would have been so much easier on my veins, and it would be less stressful on me and my nurses.
I wish, I knew from the beginning how beneficial a chemotherapy port can be, even if it requires a separate surgery and might be cumbersome.
I wish I asked more questions before agreeing to not get a port. I wish I would have asked:
Why do you recommend not getting a port?
Does it hurt to use a port?
What are the benefits of having a port versus getting treatment through my veins?
Are there any movement restrictions if I use a port?
How soon can I start using port?
What are problems that can come with using a port or using needles?
Knowing answers to these questions could have changed my mind and I know I would have requested a port. Don’t be afraid to ask. Join an online support group where other women can tell you about their experience with having a port.
Currently, I’m 3 years post treatment. To stay positive, I spend a lot of time outdoors enjoying nature. With each visit to our beautiful national parks, I’m grateful for the second chance I was given, and I’m inspired to do more for others. I’m not afraid to take new challenges either. My newest hobby is paddle boarding and I cannot wait for the warm weather to finally arrive.
Izabela Gardula, 36, was diagnosed with stage III hormone receptor-positive, HER2-positive breast cancer in August 2016. She lives in New Jersey and enjoys hiking in national parks.
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