Marcella Ribeiro Santana is a twenty-four year old systems analyst, who lives in Sao Paulo, Brazil with her husband and dog. Like many young adults, she enjoys watching films and series, reading, and travelling. However, in August of 2024, a sudden onset of symptoms, mirroring those of a heart attack, landed Marcella into intensive care, where she received a critical diagnosis: primary cardiac angiosarcoma of the right atrium with lung metastases. 

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Marcella shares much of her journey on Instagram, where we initially connected. After weeks of engaging in Instagram DM conversations, we shifted to Whatsapp, building our friendship with the help of social media and Google Translate. 

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In the following interview, Marcella tells us about her experience as a young adult with a rare and advanced diagnosis. She discusses her initial diagnosis, her relationships with her family and husband throughout her treatment, and the power of cross-cultural connection in combating the feelings of isolation and loneliness common in AYA cancer patients. 

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Sarah: I remember you sharing with me that your diagnosis came out of nowhere and that it all happened very suddenly. How did you find out that you had cancer? What was it like to receive that initial diagnosis? What was it like telling your friends and family about your diagnosis? 

 

Marcella: I fainted, I thought I was having a heart attack, and when I came back from surgery I found out that I had had pleural and pericardial effusion, and that I had a mass in my right atrium and pulmonary nodules. Before the official news of the diagnosis arrived, I imagined that it was something very serious due to the state I was in in the ICU. When the doctor told me, it seemed like I had already noticed the look on her face for days, that something was wrong. Since I fainted and was in a coma for one day after the drainage surgery, many people already knew that something had happened to me, many were already praying for me. When I told them that it was cancer, I received a lot of love and support. I still receive it today.

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Sarah: I know that you have a wonderful family who has really supported you since day one. Do you feel like cancer has changed your relationships, whether it be with your family, husband, friends, or coworkers? If so, in what way? 

 

Marcella: Nothing has changed with my husband, and I love that. I love that in my house and with him, I am not a sick person, we are normal, like before... of course he takes more care, but he has always taken care of me.

My family treats me like a baby, even though excessive care sometimes irritates me, <<laughter>> I understand them! But those who were already close to me stayed. What I have now are more people who know me through my story and root for me.

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Sarah: When you reached out to me on Instagram, I actually almost blocked you because I thought that you were lying about your diagnosis. I thought it was impossible to find another girl my age with the exact same cancer, after being told by my doctors and by Google searches that I was one of a very small number of people with the disease. First of all, I am so glad I requested to follow you and we began to grow this friendship, but what made you initially reach out? What were your feelings around finding someone else with a cardiac angiosarcoma diagnosis thousands of miles away from home? 

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Marcella: I'm glad you didn't block me!! <<laughter>> I feel like I knew you before this, I can't explain it, but I feel so much affection for you. When I received the official diagnosis and found you, it was like thinking "Oh my God, I'm not alone, I need to talk to her, because no one else in the world would understand me like she does." And I knew there was a risk that you wouldn't see the message, but I was so happy to have found you!

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Sarah: For me, our friendship has added so much joy and comfort to my life. I remember early on, when we began messaging on Whatsapp, I ordered a Portuguese textbook online, and I was so invested in learning to be able to talk to you. Although I still really want to learn more Portuguese, our friendship has taught me that you don’t have to speak the same language to have deep and meaningful connections with someone. I would love to hear your perspective on how our friendship has evolved and who it has played a part in your cancer journey. 

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Marcella: I started studying English because of you too! I've thought about you every day since we met, and I'm not lying. I want to be able to see you, hug you, laugh, and cry with you. I didn't have many expectations when I contacted you on Instagram. I didn't know if you would want to form something, even considering the cultural differences. But during the treatment you were a gift. I worry and wish you a cure.I pray that some doctor, clinic, or institution will want to investigate us and create something for us, for our cure, so that we can live many years with this beautiful friendship that we have created.

 

Sarah: One of the main feelings we connected on early on in our friendship was loneliness, specifically feeling that no one else in our lives could fully understand what we were going through. How have you learned to combat this loneliness? What do you wish people who don’t have cancer would understand about the disease? 

 

Marcella: It's a strange feeling. You feel alone even when you're surrounded by people taking care of you, even with many people saying "I'm here for whatever you need", but how can you say that they can't give us what we need? What I do is distract myself. I watch comedy series, read books that are out of my reality. I like to pretend that everything is fine for as long as I can, until I go to the bathroom and see myself bald in the mirror and remember <<laughter>> For those who don't have the disease, I would say that "it's not every day that I want to talk about how my treatment is going. It seems that since the disease there are no other subjects, you know? That bothers me sometimes.

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Sarah: I know that you’re getting ready to pause treatment and that you plan to travel. I’m excited to hear about this grand trip you’re planning! Aside from travelling, what are your goals and aspirations, and how have these changed since being diagnosed? We’ve talked a lot about how treatment side effects have made it hard to achieve dreams, like travelling. How are you feeling about switching to palliate care in the coming weeks? Do you think there needs to be a balance between good quality of life and life-prolonging treatment efforts? 

 

Marcella: I confess that I haven't been able to make many long-term plans, but not because I'm giving up on life, but because with the disease comes weakness and limitations. So I decided that I'll only schedule my trips, travels and commitments up to 6 months in advance. No super-planned trips 1 year in advance, because there's no way for me to know if I'll be willing to do it at that time. This completely messes up big plans, but I usually say that I'm adaptable! As for palliative care, I believe I'm still assimilating it, but I believe that part of the cure is also quality of life. With the disease at a standstill, I feel well enough to continue living with those I love and eagerly awaiting something new to resume treatment.

 

Sarah: Okay, so I know I’ve asked you some pretty in-depth questions. Thank you so much for taking time to be a part of this project. You are such an inspiration and a dear friend. I’ll close by asking one more question. If you could share any message with the world, what would it be? 

 

 

Marcella: Very profound, I loved it and I'm here crying with your beautiful words, my friend. What I have to say is, live, work, take care of yourself... but organize yourself to live magical moments with those you love, leave the house, go see the sun set, feel the breeze on your face... that way, if you end up hospitalized, you'll have moments to hold on to until life gets back on track... and it will! Everything passes. Thank you for this, my friend, you're very important to me!

 

Thanks for reading! For more information about sarcomas, support, and other resources, please visit: Sarcoma Foundation of America

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