“ You should be just as involved in your own treatment plan and if something doesn’t feel right to you, speak up. If you want to do more, be more aggressive, explore more options, speak up. It’s your life. Find the oncologist you feel most comfortable with and who aligns with your goals. It’s a team effort.
Maania Hopper is a rare cancer mAss Kicker. As a rare thyroid cancer patient, she has a very unique perspective on the strategies of how to fight rare diseases. Maania is the founder of Rare Cancer Aware, an organization with the goal to minimize the obstacles people with rare cancers face: treatment options, cancer research, and organizational support. They are dedicated to creating a future that holds ALL cancer patients with equal access to care, resources and treatment development in a united fight against cancer. She is currently undergoing treatment and is a Marketing Communications Manager at LaCantina Doors in San Diego. We are very honored to hear her story and learn about her proactive approach to a rare cancer diagnosis.
mK: Thanks for doing this Maania! First question… How did you find out about your diagnosis?
MH: To be honest for a long time I attributed most of my odd symptoms to stress. For example, I had been very fatigued, gained a little bit of weight and just in general didn’t feel like myself. I thought perhaps starting a new job was stressing me out a bit. It wasn’t until I was in line for a breakfast burrito that I felt a lump in my neck. It completely shocked me. After a week I decided to go into the doctor and get it checked out. I was told not to worry because many women my age have benign masses. Other than that, I felt quite normal. I really never would have guessed cancer was the root of any of my problems. But after an ultrasound and biopsy with multiple reviews from pathologists they confirmed not only was it thyroid cancer, but a very rare and aggressive form known as “poorly differentiated thyroid cancer”.
mK: Whoa… That is VERY RARE! What is the mission of “Rare Cancer Aware?”
MH: After I discovered I had a rare cancer, my eyes were opened on not only the struggles that people with cancer face, but the unique obstacles that those with rare cancers face. The data just isn’t there to support which treatment routes will yield the best results, the number of treatment options are limited, the resources such as support groups for rare cancers just wasn’t there, the list goes on and on. After I exhausted the standard treatments –surgery, radiation, radio-iodine therapy, chemo pills etc. I was left to find my own clinical trials. Had my husband not been in medical school, I would have been completely lost. Once you exhaust standard forms of treatment, you’re really on your own. After a few failed clinical trials, my husband scoured medical publications for possible treatments. At this point the cancer had spread from my thyroid into my lungs, making me Stage IV. Luckily, he was able to find a drug in China, Gendicine, that treated my genetic mutation, p53. With the support of our families we went to Beijing for probably the hardest treatment I’ve ever had to endure. To our surprise it actually worked! At least partially, reduced a significant portion of my tumors in the upper lungs. Now I’m back in the US and exploring immunotherapies to combat the rest. But the amount of red tape we have to go through to get access to current therapies is a battle in itself. All these experiences made me realize just how lonely and desperate rare cancer patients and their caregivers can get. It’s a constant battle to gain access to treatment because pharm companies gear their research to common cancers, insurance won’t cover what they deem “experimental” and most families like us can’t afford half a million dollars for a treatment. For these reasons and more, my husband and I felt compelled to give a voice to rare cancers and provide meaningful resources to help patients navigate through quite frankly, a system rigged against us. The response has been overwhelming, not just nationally but worldwide. We’re very excited to launch our programs in 2017 to help more people and maybe one day even lobby to change legislation that systematically displaces rare cancers from meaningful research and access to care. Europe and Australia have recognized this problem and are doing remarkable things, we hope to do the same for Americans and anyone else we can help.
mK: That is extremely important and definitely fulfills an unmet need in an under-represented patient demographic! What drives you?
MH: Ha, that’s a loaded question. My husband and family is #1, always. I plan to keep the promises I made i.e. watching over my younger sister, taking care of my parents when they get older and sharing a long life with my husband. I guess I’ve also always said, if you know better, do better. Now that I know more about the unique struggles rare cancer patients face, it’s up to me to do something about it. I come from a strong family that’s brought me up by example to help others whenever possible. That community mentality I was brought up with motivates me to stick around and make sure I see Rare Cancer Aware through.
mK: When was the first time you felt like yourself after your diagnosis?
MH: Because I’m still battling cancer, I haven’t felt like myself since period. I honestly can’t remember what it feels like to be “normal” anymore. My tolerance for pain is so high at this point, that I don’t always notice how much more I fight to get through my day than the average person. I don’t think I’ll ever feel like myself, as in my previous self. Facing mortality at such a young age changes you. Your entire perspective shifts. But I like who I am today. As hard as its been, I wouldn’t trade all that I’ve learned and the strength I’ve gained from it. It’s made me a better person.
mK: These experiences give everyone a new perspective, but you can control your response to the adversity! What makes you laugh, cry, angry?
MH: Haha, cat memes make me laugh, ALWAYS. When my husband puts the dishes on the wrong side of the sink that makes me cry. Haha no but…whenever I have the privilege of getting to know someone who’s lost a loved one from cancer –that makes me cry. The heartache never ends and rarely is there ever real closure. It feels like starting a movie but never finishing the last 20 minutes. You never know how it ends or how beautiful it could have been. That heartache keeps me up at night staring at my husband sometimes. I imagine it would feel nothing short of a nightmare. What makes me angry? People that show little regard for life or resort to hateful rhetoric or actions instead of practicing compassion and empathy.
mK: What would you say is the most interesting thing you’ve done?
MH: Probably going to China for treatment. It was risky and took a lot of courage. We really had no idea what we were getting into and the experience was definitely eye opening both medically and culturally. I think a lot of people thought we were crazy, but desperate times call for desperate measures.
mK: When you’re backed into a corner, you “gotta come out swinging”! You’re the one in charge. So… what is your guilty pleasure?
MH: Chocolate. Haha, as a cancer patient you know you should avoid sweets as much as possible but what is a girl supposed to do?!
mK: Here’s a random question for you… If you could have coffee with anyone alive or dead, who would it be/why? What would you talk about?
MH: Probably Beethoven. He overcame a tremendous amount of heartache, the loss of his mother left him to care for his younger siblings. Nonetheless he still moved forward to become one of the most amazing timeless composers to date. His ability to continue composing music when nearly deaf is really inspiring to me. His sheer willpower to continue to do what he loved despite whatever life threw at him is something I feel I could learn much from. He was known for his sense of humor, and I have a feeling he’d be a crack up, after all laughter is the best medicine!
mK: What do you like to do in your spare time?
MH: When I’m not working, I’m usually working on Rare Cancer Aware or helping patients like myself navigate the system. With a husband in medical school, any free time he gets I like to spend with him. I’m lucky and have many family and friends in town so that helps. If I’m not busy doing that, cuddling up to a good book and my fat cat is the next best bet.
mK: Cool! What are you up to now?
MH: Just extremely busy at work. Gearing up to produce some interactive videos in the Fall, the very first of its kind in our industry. It’ll be a very intense Fall shooting multiple videos, launching new products and preparing our global brand presence. It’s a good thing I love my job! In addition, we’re gearing up to launch some awesome research and support programs under Rare Cancer Aware. I have assembled an amazing team and we’re ready to make rare cancers heard once and for all.
mK: Any advice for people or loved ones that get daunting diagnoses?
MH: Take it a day at a time. Never underestimate yourself even if your doctors may. You are as strong as you allow yourself to be. Be proactive in your health, ask questions…sometimes people feel because they are not the “expert” that they have no place to question or propose solutions. Not true. You should be just as involved in your own treatment plan and if something doesn’t feel right to you, speak up. If you want to do more, be more aggressive, explore more options, speak up. It’s your life. Find the oncologist you feel most comfortable with and who aligns with your goals. It’s a team effort.
mK: Any parting words for all the mAss Kickers?
MH: This is your journey. It’s ok to attend support groups and it’s ok to choose not to. It’s ok to laugh your sorrows away and it’s ok to cry. It’s ok to busy yourself with work or your favorite activity, and it’s ok to watch the same movie over and over to help you cope. There’s no “right” way to deal with cancer. Most importantly, it doesn’t have to define you. It’s an opportunity to learn more about yourself and grow even more. It’s not a time to stop, it’s a time to fight for what you love to do and who you love even harder. Living with cancer is living vigorously and a passion to be reckoned with. Own it.
Maania Hopper: fat cat cuddler, book worm, videographer, chocolate junkie, cat meme addict, Beethoven fan, proactive rare cancer advocate, and family-centric thyroid cancer thriver. Check out Rare Cancer Aware group on Facebook. Thanks again for sharing your story with us. We look forward to seeing Rare Cancer Aware grow!