What I Wish I Knew: Treatment, Clinical Trials and Finding Support

April 22, 2019

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 Living Beyond Breast Cancer, 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.


On April 23, 1996, which was 29 days before my 36th birthday, I was diagnosed with stage IIA invasive ductal breast cancer of the left breast, with a 2-centimeter tumor. It was ER-positive, PR-positive, and HER2-negative. This year marks my 23rd year of survivorship!

I started a new position as a human resources manager at General Electric in a suburb of Milwaukee, Wisconsin, approximately 6 weeks before my diagnosis. I worked for the part of the company that manufactured diagnostic imaging equipment, such as mammogram, MRI, CT scan, ultrasound, nuclear imaging and PET equipment, which meant that there was a company doctor that I was able to interact with on a regular basis. He took a personal interest in my treatment and care once he found out about my diagnosis. That also allowed me to have access to the many resources that a large global company like that has. He had contacts in a network of the best medical professionals around, and I totally trusted his advice and guidance throughout the process.

I was fortunate that I had an absolutely wonderful and caring oncologist. I felt that between the company’s doctor and my medical oncologist, I was in excellent hands.

Two weeks after my diagnosis, I had a lumpectomy, along with the removal of the lymph nodes in my underarm. After my surgery, I found out that the cancer had spread to 9 of 12 lymph nodes, which meant that my cancer was an aggressive one.

Since I wanted to get all of the cancer out of my body as soon as possible, I told the company’s doctor and my oncologist that I wanted to start my treatment right away. At the time, I just wanted to start my chemo treatments, believing that the sooner I started, the faster any of those lingering, pesky cancer cells would go away.

My oncologist told me that he had developed a custom combination of chemo drugs that would be administered over the course of 3 days every 4 weeks, for a total of 12 treatments. I elected to start my first chemo treatment on my 36th birthday, as a symbolic gesture to the fact that I felt I was being “reborn” with this second chance of life after my diagnosis.

Ports for Chemo

Here is what I wish I knew: I wish I knew that I should have asked that a port be installed so that I could avoid damage to my veins from the needles used during my chemo treatments. I vaguely remember that I was told that my veins should heal after treatment, but mine never did.

Even after 23 years, getting blood draws or having an IV inserted for certain diagnostic tests can be a real nightmare for me. Because of the lymph node removal, I can only get blood drawn from my right arm. I have to hope that the medical professional or phlebotomist (a professional trained to draw blood) is competent enough to draw blood from, or to insert an IV into, the one good vein I have in my arm.

Some medical professionals and phlebotomists are better than others, and so I have a certain amount of anxiety each time I have to get blood drawn or an IV inserted. I have to go through the process of explaining my experience with chemo, and I have to warn them about how I am a hard stick, and how my veins are non-existent: “Please use the smallest needle you have”… “Yes, I drank water to pump up my veins”… “No, I would prefer not to have you put a needle in my wrist or hand”… “Usually if you put a warm compress on my arm, you might get that one vein to pop up”… and on, and on, and on.

I would like to say that it has gotten easier over time, but it has not. I wish I had my veins back!

Good phlebotomists can be hard to find, and I totally respect and admire those who can get blood out of my vein on the first attempt.

Clinical Trials

I also wish I knew that not all clinical trials lead to the outcome the researchers expect.

Since I wanted to treat my breast cancer as aggressively as I could, given its aggressive nature, I chose to enroll in a clinical trial. Technically, I did not meet the requirements of the trial; Participants were supposed to have cancer that spread to a minimum of 10 lymph nodes. I actually had nine affected, but fortunately for me, my oncologist was very good friends with the head of the stem cell transplant program at Duke University Hospital, which was involved with the trial. My oncologist was able to convince the head of the program to let me enroll. I felt very lucky.

The trial was looking at the use of an autologous stem cell transplant to treat aggressive forms of breast cancer. What is an autologous stem cell transplant, you might ask? Memorial Sloan Kettering Cancer Center describes it like this:

“In an autologous transplant, your own blood-forming stem cells are collected. You are then treated with high doses of chemotherapy. The high-dose treatment kills the cancer cells, but it also gets rid of the blood-producing cells that are left in your bone marrow. Afterward, the collected stem cells are put back into your bloodstream, allowing the bone marrow to produce new blood cells.”

Participating in this particular clinical trial definitely had its ups and downs. The greatest up is that I survived, and that I am still here!

The scariest part of the trial was in September 1996, when Hurricane Fran took an unexpected turn off the coast of North Carolina and into the Raleigh-Durham area where Duke University is located. It caused power outages throughout the region that lasted 4 days. Because the tight schedule for the clinical trial was set in stone with no deviations allowed, I had to start the process for collecting my blood-forming stem cells with a machine running on an emergency generator. All I was thinking about was what would happen if the generator lost power during the extraction process. It was a bit frightening at times, though the electricity came back about 4 hours into the process. I was extremely relieved.

There was some good news—I finally got a port. YEAH! I entered the hospital the day after the extraction, and needed that port because I had to endure 96 straight hours of high dose chemo drugs being infused into my body. There was no way that they could use my one arm for all of the drugs, for such a long period of time.

My blood-forming cells were reinfused into my body a couple of days later. The procedure was considered a success, and I stayed for a short period of time to recover, during which time I closed on the purchase of my house in Wisconsin remotely from 900 miles away. I went back to Wisconsin two weeks later and moved into my new house and spent more time recovering. The final part of active treatment happened when I underwent 36 rounds of radiation during the brutal Milwaukee winter of early 1997.  

Years later, I found out from my current oncologist that the results of the trial concluded that those of us who went through this course of treatment did not have a higher rate of survival compared to those individuals who did not go through this procedure.

However, I do not have any regrets, because it worked for me. I am still here and well, and have not experienced a recurrence after 23 years!

Dating

I wish I knew that having had breast cancer was not going to be as much of a factor in my dating life as I thought.

I was single while going through all of this. My parents were incredibly supportive, taking time to fly to both Milwaukee and Raleigh-Durham to take care of me. I also had great friends and former co-workers in the Raleigh area, since I had worked for another division of General Electric prior to moving to Milwaukee. Up to that point, my dating life had not been good, and my greatest fear was that no one would want to date a woman who had gone through breast cancer treatment.

I moved back to the Philadelphia area 6 months after my treatment was over and I had a more active dating life than I thought I would. After 7 years of dating a few different men, I did finally meet someone special. He was introduced to me through my hairdresser.

I married him 12 years ago. So, I can say that I wish I knew I would actually end up married after breast cancer, since I was not convinced that I would ever meet someone to marry, and do so at the age of 47!

Finding Support

What else do I wish I knew? I wish that I knew about LBBC so that I could have reached out to someone to ask for advice about what to expect before I started chemo, and to ask the many questions I had throughout my breast cancer journey. I would have really benefitted from someone advising me about how to prepare for my chemo treatments.

However, since I was living in Wisconsin, and the internet was not as robust as it is today, I had no idea that LBBC existed back then.

I chose to become a volunteer at LBBC 9 years ago because I thought it was important for me to try to be a resource for others who are in various stages of their breast cancer journey, and to show that I am a long-term survivor. I have been very fortunate and blessed that I have been relatively healthy since my treatment ended in March of 1997.

In closing, what would I advise others?

  • A port might be a nuisance and an inconvenience in the short term, but your veins will thank you in the long run! Ask for one before starting chemo.
  • Being diagnosed with breast cancer when you are single does not mean you will never find a life partner. Trust me; if it could happen for me, it can happen for anyone!
  • Organizations such as LBBC exist to make sure you know that there are resources and support available to pose questions to and to reassure you that you are not alone and that others have been through what you are experiencing. Use LBBC and recommend it to others.

If you are recently diagnosed and would like to learn more, be sure to check out our Guide for the Newly Diagnosed. If you want to participate in the What I Wish I Knew series, you can share your story with Living Beyond Breast Cancer.

 

What I Wish I Knew is sponsored by