One on One with Shannon Florer, Diagnosed with Stage IV Breast Cancer at Age 32
LahSET is fortunate to have had the opportunity to ask Shannon some questions and learn more about her breast cancer diagnosis and treatment. We hope that this interview is informative, raises awareness, and encourages everyone to help one another.
How old are you and have you ever had any health issues before being diagnosed with breast cancer?
I am 32 years old. Prior to being diagnosed with breast cancer the only other major medical things to have happened to me was having endometriosis removed and fixing a deviated septum!
How did you find out you had breast cancer?
Over the course of 2022 I noticed that my left breast was getting firmer and bigger than my right breast. At first I wasn’t worried because I knew that it was common for women’s breasts to be a little uneven. I put the thought aside for a few months. Around October I noticed that my left breast was starting to become quite firm. Again, I googled it and figured that it must just be dense breast tissue. I have had a lot of not great experiences with doctors and the health care system coupled with an anxiety disorder that often makes it hard to even make a phone call to make an appointment so I was doing a lot of mental gymnastics to avoid addressing it. By late November my left nipple was beginning to be inverted so I finally made a phone call to get a doctor's appointment. They didn’t have anything until early January so I set the date and carried on through the busy holiday season. In December I noticed two firm little things underneath the skin above my left nipple, almost as if there were two bb’s under my skin, so I began mentally accepting that I had cancer. I didn’t tell anyone of my suspicions except my roommate. My parents were finally getting to go on their dream trip of a cruise around the world and my siblings' families both have quite busy lives running their kids around to activities and such so I didn’t want to rock anyone’s boat unless I knew for sure it was cancer. I went to my physical and told them I would like a breast exam. If I hadn’t asked, no one would have suspected me of having any kind of cancer. My doctor told me that she would like me to get a mammogram. I think that’s when I finally told my siblings. They had asked me to come in for a biopsy to see if the lumps were cancerous and my sister told me I wasn’t allowed to go to any more appointments alone. She was going to be there for me no matter what. Unfortunately, I had a pretty brisk reality check when actually getting the news of my cancer. The radiologist unkindly called me on the phone and fairly bluntly just blurted it out. I tried to keep it together so I just politely asked what the next steps were and then drove to my sister’s house to cry while she held me. From there we called my brother to tell him and then all three of us made the decision to call my parents on their cruise ship in the middle of the Pacific Ocean and let them know.
The rest of this year has been quite the whirlwind so there were many appointments and tests between those phone calls and my official diagnosis. Once I finally met with an oncologist he told me I had HER2+ breast cancer stage 3. This was because I had the initial tumor in my left breast but they had biopsied the lymph node under my left armpit to check and the cancer had moved there. They gave me a PET scan and I got the call that there were two small spots at the top of my liver they wanted to biopsy and check out, but were probably nothing. After the biopsy my oncologist called to tell me the unfortunate news that the biopsy had shown the liver spots were cancerous, too. Thus my official final diagnosis was HER2+ Breast Cancer Ductal Carcinoma Stage 4. The real kicker was they did genetic testing on me and I don’t carry any known genetic markers for breast cancer or any kind of cancer they tested. Just one cell in a milk duct got weird one day and the rest is history.
What emotions did you have after being diagnosed?
I was overwhelmed following my diagnosis. A lot of the time it felt quite surreal because you still have to go about your daily life and then at least once every day you were hit with a brick wall in the face of your diagnosis. I would feel seemingly totally fine and then the tears would just pour out. My sister is big on naming your fears so she said to just say them out loud, whatever you are scared of after hearing your diagnosis. I told her that I wasn’t that scared of dying, no more than the average person, but that if I died it would destroy the lives of everyone I loved. I wasn’t that afraid of treatment, losing my hair, even surgery. But the thought of dying and leaving my parents, siblings, nieces, nephew, and friends behind weighed heavy on my heart.
What treatment have you had and are you currently getting now? How long will you be getting treatment?
I first underwent surgery on Valentine’s Day to get a power port implanted in my chest to begin chemo. Then I went through 6 rounds of chemotherapy. Because my tumor grew so quickly my oncology team chose the middle level of aggressive treatment. I would get chemotherapy every three weeks. I just recently completed 30 sessions of radiation where you go every weekday for six weeks. For the time being I will continue getting maintenance chemotherapy on the same three week schedule, but only with two drugs. The kind that they give you that feels like poison because they make you sick and your hair fall out are done. The two drugs they give me now mostly just make me sleepy for a day or two. I will continue getting these drugs for the foreseeable future. I had a clean PET scan this summer that showed no detectable cancer in my body so they will just keep monitoring me in the hopes that the disease doesn’t come back.
What are the side effects of the treatment you're getting?
There are a litany of side effects of the treatment I’ve received since February. My hair fell out by the second round of chemo. I had the typical nausea and exhaustion. My cuticles and ear wax disappeared. My nails bubbled up and eventually had pus under them. I lost a lot of my sense of taste or it changed so things tasted weird. The chemo they gave me would cause bone pain so I was often very achy. My nose would constantly drip and I developed neuropathy and a lack of feeling in my feet and fingertips.
Since completing radiation treatment I have to care for some pretty intense burns all around my left breast, armpit, shoulder, and neck. At one point I developed a difficulty and discomfort when swallowing due to the radiation.
What do you do during treatment and during this difficult time to find joy?
I am naturally a very joyful person and I tend to have quite the sense of humor about everything so I joked around quite a bit. I got to spend a lot of time with my family watching movies and snuggling with my sister's dog and that brought me a lot of joy.
What are you hopeful for right now?
I am hopeful that I will get a little bit of my life back now that I am done with the major parts of my treatment. I was never going to be someone who let breast cancer define my life or take over my identity, but you can’t ignore something this major and how it changes your life. Now I feel like I have the luxury of making future plans, rather than living one day to one treatment cycle at a time.
How has your daily life changed after being diagnosed with breast cancer?
After being diagnosed with breast cancer the biggest thing in my daily life that changed was accepting the new identity and mindset of being “A Patient”. That takes a lot of adjustment to know that you are sick and everyone’s attention is now focused on you. I am not known for loving being the center of attention, nor one to ask for a lot of help if I can try to do something myself. I would much rather help others. I had to learn quickly to humbly let people help me and accept their love in the form of actions aiding me in my daily life.
I’m also tired. Like all the time. This year has zapped my physical and mental strength in a way that will take a long, long time to recover. I constantly remind myself that I don’t know myself anymore. I don’t know what my grip strength is, my new spice tolerance, what my new hair color or type will be, what it feels like to be able to smell anything, or to even be able to fully feel my feet. I have a lot of what people call Chemo Brain, and it’s often hard to recall things or sometimes get out the thought you are trying to convey. Things that weren’t work for me before now take a lot of effort.
In your opinion, what could be improved upon in the healthcare system?
Unfortunately every aspect of the healthcare system is overworked and exhausted. It wasn’t awesome before, but the pandemic really did a number on everyone who works in healthcare. The system really needs to be streamlined. If you don’t have anyone to advocate for you and you are unable to advocate for yourself it is so easy to get lost in the shuffle. If I hadn’t had my family to walk me through this and keep track of all my medical things there is no way I could’ve done this on my own. They are literally giving you drugs that make you exhausted and a little confused but continue to ask you incredibly detailed questions with a lot of medical jargon and medicinal names that the average person can’t pronounce. I still can’t tell you half of what has happened to me or what the names of medicines I was on were. It was basically a miracle that I can remember all the letters involved in my official diagnosis. And none of these medical places share computer systems, despite even being in the same building. Even though all of my medical records should theoretically be under the same umbrella system they would often ask me what my port should be flushed with before procedures. The system should be streamlined so that questions like that don’t fall on the tired and beleaguered patients.
How have finances impacted your healthcare journey and/or emotional state? Do any organizations help cover specific items you might need during treatment?
Finances are an incredible burden when you are sick. Thankfully I had insurance. I could continue working for the first two and half chemo cycles, but after that I was way too rundown. I have unfortunately had to use up most of my savings and am now trying to look for a job to rebuild that. At my cancer center they do give you a liaison person who has a wealth of information on resources for cancer patients from vouchers for wigs, food assistance, support groups, rides to treatment, etc. but I am lucky enough that I have an incredible support system so I didn’t need to take advantage of most of those resources.
How could a personal healthcare liaison be of assistance to you?
A personal healthcare liaison would’ve been incredibly helpful during my cancer journey. Thankfully my sister has a type A personality and kept everything organized in a binder and my mother is a retired nurse so they sort of acted as my personal healthcare liaisons before I knew what that was! If I didn’t have them I definitely would have hired one to purely be my medical-ese interpreter. It’s hard to remember everything they tell you in your appointments if you don’t have someone else in the room with you. Having someone who can reach out about medicines, appointments, and navigate insurance is the most valuable resource you could have.
Have there been any organizations or social media pages that have been helpful to you during this time?
Funnily enough the content creator Hank Green happened to be diagnosed with cancer this year. He is very smart and already creates educational content that is on an accessible level so everyone can understand. So when he was diagnosed with his disease he began creating some great short form content that I would share so he could explain to people what was happening to me in a way I couldn’t articulate.
If you could tell young women who have just been diagnosed with breast cancer anything, what would you tell them?
It is a scary thing to hear, especially if you are on the younger side. Take it one day at a time and don’t be afraid to ask for help. There are so many survivors of breast cancer, even if you’re stage 4 like me.
Is there anything else you want people to know about you, your healthcare journey, or about breast cancer?
The best thing I did for my healthcare journey was when I announced I had cancer on social media I made a whole post about how I felt and the boundaries people could now follow when interacting with me. A lot of people will want to reach out to you or help with all the love and good intentions, but often the things people say, bring, buy, or do are incredibly unhelpful when you are in one of the most devastating times in your life. Sometimes the Midwestern urge to bring a casserole around must be quelled when the person you’re trying to help is nauseous and has food allergies. I also designated who could contact me. I am just one person trying to wrap my head around something life changing so although I am thankful for people’s love and condolences, having 150 text messages and phone calls is a lot to handle in that moment. I instead accepted social media comments and then had all other questions and inquiries sent to my sister. That way the burden wasn’t on me as the patient to say yes or no to things when I was exhausted from making medical decisions or having to repeat myself all the time.
Shannon’s Cancer/Illness Shopping List Recommendations:
Adaptive clothing! Having a sweatshirt that had all these zippers on it so they could access my port or put in an IV was so nice. Especially if your patient is older or struggling with mobility, taking your shirt on and off is a lot. Plus, medical buildings are often quite chilly and this way you can maintain your body temperature without interrupting the medical workers flow as they try to administer treatment to you
Extra Strength Tylenol Dissolve Packs! I have always struggled with swallowing pills and that was exacerbated by the nausea and vomiting. This berry flavored extra strength tylenol my mom found on Amazon was a lifesaver. It just melts on your tongue and doesn’t even need water. 10/10 recommend.
Finding an app or device where you can log your medications. It’s so hard to remember all the pills and dosages and what time to take things. I personally purchased an Apple Watch so it would buzz and remind me to take my pills. In Apple’s Health App you can log all your medications with the shape, size, and color they are, as well as what time to take them. The app also lists drug interactions between everything you’ve taken so you can know if your meds shouldn’t be mixed! Super helpful for staying on top of everything