Episode 5 - Elke - Survivor - Invasive Lobular Breast Carcinoma - Golden, Colorado - USA
For all the resources and links to helpful information referenced in today's episode, please scroll down to the bottom of this interview transcript. Thank you!
Jim Foster: This is the Cancer Interviews podcast. Today we have an amazing guest with us, who is a breast cancer survivor, and I am super excited to have her share her journey with us. There is one previous episode, known as Episode Zero, which is an introduction, with an overview of the Cancer Interviews podcast. So please check that out, if you haven’t already. Please note that we discuss our guests’ stories only and we do not provide medical advice. We suggest you consult a licensed medical doctor for all your medical concerns. After this episode, don’t forget to go to CancerInterviews.com, where you can get our Cancer Quick Start guide and Caregiver Quick Start guide, along with tons of other resources to get you through your cancer journey. Hope you enjoy the show.
JF: Welcome, my friends and teammates. We’re glad to have you with us. We want you to know that you and your journey are the sole reason for our podcasts. We refer to ourselves as “Team Journey,” as we share the cancer journey together. I am pleased to introduce our guest, Elke. Are you ready to share the journey?
Elke: I am, thanks for having me.
JF: Elke had breast cancer, and has been in remission for three and a half years. She lives in Golden, Colorado, enjoys riding her bike, hiking in the mountains and playing with her kitties. We can all learn from hearing what Elke has to say, so please join me in welcoming Elke to the show. We’re happy to have you here. We have given a brief introduction of you, but now we would like to hear more about you, where you are from, and what your life was like before being diagnosed with cancer.
E: I grew up in Germany in a very small village in the Black Forest. I am the second of four sisters. I met my husband while attending the University of Heidelberg. After I graduated, we moved to Florida. I enjoyed living in St. Petersburg. We lived in a neighborhood where almost everybody was between 60 and 80 years old. My best friend in the neighborhood passed away from breast cancer, so that was my first encounter with cancer. We came to Colorado in 1998, and I have been living in Golden ever since.
JF: What happened in your daily life to cause you to think something might be wrong with you?
E: Actually, I had no symptoms. I went for my annual mammography. Then I received a letter in the mail asking me to come in for another appointment, which sought to exclude any concerns.
JF: Was that the test that ultimately led to your diagnosis?
JF: What were your feelings and emotions when you learned you had been diagnosed?
E: I had received a similar letter before and what happened was they checked me for a lump and it was benign. So I expected the same thing to happen this time. But this time I had to go in for additional tests and a biopsy that led to my diagnosis.
JF: And what was your official diagnosis?
E: Invasive Lobular Breast Carcinoma.
JF: What led to the treatment you selected?
E: I have two nurses in the family, so I consulted them first, plus a friend who had had the same diagnosis a few years earlier. I had to make a decision between a unilateral or a bilateral mastectomy. At first, I considered a lumpectomy, but that was ruled out because of the size of my tumor. I also consulted a couple of patients that were my friends, but what swayed me to have the bilateral mastectomy was an x-ray technician who was much younger than I who told me that if I have only one breast removed I will still have to have mammographies performed on the other breast, and I thought, why not be done with this, and I chose to have the double mastectomy.
JF: That sounds like a tough decision. Did you undergo the treatment in the town where you lived at the time?
E: I had to go to Denver, then spend a week in intensive care, then rest at home for a month. That was my treatment.
JF: So were you working at the time?
E: I was working until my surgery, then I was off for a month. Then I went back to work.
JF: Did you have family or friends close by that could be there for moral support?
E: My family lives in Germany, but I had support from friends who live in Golden. They offered to take me to the hospital.
JF: In addition to your procedure, did you have to go through radiation or chemo?
E: I expected to have chemo, but my oncologist explained that my cancer does not have a different outcome with chemo. So, the estrogen blockers was the prescribed treatment.
JF: Did you have anyone you could rely on as a caregiver?
E: I had friends to take me to appointments, and some actually stayed in attendance in the exam room with the doctor. I had a lot of support from friends, and talking to my sisters helped as well. Even though they are far away, we talked about what surgery to pursue and what steps to take.
JF: That’s wonderful to have that support in that time. One question our audience likes is how the procedure affected your hair. Do your procedure cause you to lose your hair?
E: No, because chemo was not part of my treatment. I was also disappointed because a sister of mine had been diagnosed months earlier with ovarian cancer, and she had to undergo very heavy chemo treatment. I was also disappointed that I didn’t require chemo because my sister would e-mail me with the latest types of scarves she was trying out. I wanted to have that same kind of treatment so I could empathize more with her and be in the same boat.
JF: That you cared enough about her that you wanted to join her in that experience, say a lot. It also underscores that every type of cancer is different and every treatment is different. As for your treatment, were there any side effects that caused problems?
E: Other than losing a major body part, the medicine I am still on makes my joints ache and it is not very pleasant. The first medicine I was on made me confused and dizzy, so we changed the prescription, but that’s pretty minor compared to what other patients have to endure. I did have to take these estrogen blockers for five years.
JF: I hope the pain will decrease once you get past that milestone. Now did you have insurance to cover your medical bills?
E: Luckily I have insurance through my employer. Other than the co-pays, I was covered.
JF: During your journey, what was your low point and how did you deal with that?
E: My lowest point was when I learned my sister’s cancer was terminal and that she would not survive. We had sort of lived this experience together, and she was diagnosed one month before I was diagnosed, so that was very sad to know that she wouldn’t make it.
JF: I have those same feelings, as I have friends who were diagnosed about the same time as I. There are times when I wonder why I made it and they didn’t. It’s a very heavy burden to carry and I can only imagine how that makes you feel. How did you find the strength to overcome that?
E: Actually it was another sister of mine who helped. When we learned my older sister didn’t have much longer to live, we arranged to all meet in Switzerland. We rented a house by a lake. We all got together and had a very fun time. We hiked, my older sister could still do everything, she was very athletic and lived in a healthy way, so we spent two weeks in Switzerland together, celebrating us, and that was the gift my sisters gave ourselves.
JF: Other than learning you had gone into remission, is there anything positive about your cancer journey that sticks out?
E: It was that trip with my sisters, that was the best thing.
JF: On the flip side, was there a setback during your journey and if so, how did you deal with that?
E: I have not experienced a setback yet.
JF: Was there a time in which you felt you had overcome the biggest part of the challenge?
E: I think it was when my oncologist told me I no longer had to come in every six months, and that it was okay to make appointments once a year. That was the biggest leap forward.
JF: How did that make you feel?
E: Much better because I am sort of a fatalist because that time I saw the oncologist, I was bracing myself for bad news. So, I was just relieved.
JF: What have you been doing with your life since then? Is there any change in your day-to-day routine?
E: Just getting up in the morning, having a cup of coffee, riding my bike to work, that’s a gift.
JF: It sure is.
E: I have a heightened sense of awareness of little things. I’ll stop and take a picture of a flock of geese in the morning or a deer that crosses my path. You don’t take things for granted so easily anymore.
JF: What are some of your hopes and dreams for the future?
E: Just to be able to live long enough to get to retirement.
JF: Do you have plans to stay in the Golden area, or would you want to go back to Germany?
E: Germany for visits, but I like Golden. I like Colorado.
JF: What words of wisdom would you share with folks who have just learned they have been diagnosed with cancer?
E: Every person’s experience is unique. There is no recipe. You have to discover what makes you feel good. You might want to join a support group, as my sister in Germany did. Some people don’t want to talk about it, not with just anybody. They might prefer one or two select people they are close to. That was probably my experience.
JF: What was the scariest thing about your cancer experience?
E: The thought of not being prepared for death, not having my affairs in order, and leaving my cats behind.
JF: How did you overcome that fear?
E: I have not overcome it.
JF: What would you consider an accomplishment during this part of your journey?
E: Being here. Being able to talk about this. That’s a huge accomplishment. I want to add I had wonderful surgeons. I want to salute the wonderful team at Kaiser in Denver. I really didn’t think I could live to talk about it, so I really want to give credit to my surgeons.
JF: What’s the best piece of advice you received?
E: I talked a lot to a friend of mine in Florida. I felt very comfortable talking to her, but I cannot pinpoint any one piece of advice. Talking to this friend was important, and she kept assuring me she came through it and that I will, too. That made me feel very hopeful. Hearing from another person who has had the same kind of cancer is the best advice I can give.
JF: If you had this to do all over again, is there anything you would have done differently?
E: Yes, I would have taken more time off from work. I could have taken more time, but I was out for a month after a 12-hour surgery.
JF: Before we sign off, do you have any words of wisdom?
E: Just take one step at a time. Do what feels best for you.
JF: Elke, we are so happy for you, and wish you the best.
E: It was a pleasure. Thanks for having me.
JF: Thanks, Elke. And please don’t forget, you are not alone, and we wish you the best possible outcome from your cancer journey. Until next time, please take care and we’ll see you on down the road.
LINKS TO RESOURCES AND INFORMATION REFERENCED IN THIS EPISODE:
Website: www.CancerInterviews.com - click here
YouTube: www.YouTube.com/cancerinterviews - click here
Newsletter: My Team Journey Newsletter - click here
Facebook: Private Facebook Group - click here
Guidebook: Caregiver Quick Start Guide - click here
Guidebook: Patient Quick Start Guide - click here