A tumor? In my heart?!?

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Paula is a “youngish 60”, as she describes herself, recently retired after a long career in public relations and marketing, and very active. A couple of years ago, for example, Paula and her husband hiked 530 miles together across northern Spain on the famous Camino de Santiago trail. So, definitely “youngish”.
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But this past spring, Paula was admitted to the hospital after a week of chest pain, shortness of breath, jaw pain and crushing fatigue. Her initial diagnostic tests suggested she was NOT having a heart attack – but what was discovered after that was something very rare.  .
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“The echocardiogram showed an accidental finding of a tumor on the aortic valve leaflet.  It looks like a sea anemone moving with the blood flow, back and forth as the heart pumps. The risk is that this tumor might clog the artery, affecting heart function or breaking off and traveling who knows where!”

Here’s what we know about tumors in the heart, according to Johns Hopkins University School of Medicine.

“Any type of abnormal growth in the body is called a tumor, whether it’s determined to be cancerous (malignant) or non-cancerous (benign). Malignant tumors are fast growing and likely to spread to other parts of the body quickly, while benign tumors are slow growing and often harmless, depending on where in the body they are located.

“Primary tumors originate in the heart and are rare, occurring in one out of 2,000 people. Tumors that originate in another part of the body and then spread to the heart are called secondary tumors.

“With a heart tumor of any type, there may be no symptoms present. In other cases, symptoms may be either mild or severe. Often the symptoms of a heart tumor develop suddenly and can resemble those of other heart diseases.”

A tumor in the heart is so rare that it was only in 2016 that the world’s first ever Cardiac Tumor Conference was held in Toronto. Two years earlier, German researchers had published a paper reporting that, although they have been identified since the Middle Ages, cardiac tumors remain “a diagnostic puzzle and a therapeutic challenge.”

As Paula herself learned:

Not much is known about these tumors, or why and how they form. Every case has its individual nuances.

“These things may or may not get bigger and cause problems. They are very rare, and are sometimes found on autopsies; some people don’t even know they have them!

“It’s one of those ‘Lucky you!’ cards you get in life.”

In her own case, luck was involved. She learned that hers was a non-cancerous benign tumor called a papillary fibroelastoma* – which also  meant less urgency in deciding on treatment. Her initial response to hearing this diagnosis was what she calls suspended disbelief that this was happening to me.”

“I was worried because this was just so out of nowhere that  I couldn’t believe it!” 

She was prescribed medications to reduce her risk of future blood clots, and had appointments for two further consultations to determine whether she’d go ahead with surgery. Both consultants recommended the open heart surgery to remove the tumor. As Paula described that decision:

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I decided to change my summer travel plans! After research and two surgical consults, I knew I didn’t want the potential for a stroke, and that was my driving force to saying yes to surgery.”
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“On the day of my surgery, I felt amazingly relaxed and calm.  I knew I had a good team, that they would do their best for a successful outcome, and that it was out of my hands. I was not afraid to die – and  I wouldn’t know it if I did! Once released from the fear of death, knowing that I had lived a full life at age 60 with few regrets, I was even able to nervously joke with everyone ahead of surgery. 
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“My surgeon and I had hoped for just a valve repair, but I ended up with what’s called an Edwards Inspiris bovine valve replacement due to the size and location of my  tumor. Tumor tissue pathology confirmed it was a benign papillary fibroelastoma (PFE).
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“By the time I was discharged from the hospital, I was ready to leave. I felt good and mostly free of pain. In fact, I was energized and excited to be going home. I felt grateful that this tumor had been found before an adverse event.
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“My first night home, as my husband and I were having dinner, I said to him, ‘What a week it’s been!’ ”
A fibroelastoma like Paula’s is a relatively common type of a rare benign heart tumor. Another known benign tumor is a myxoma; in the pediatric age group (under 15 years of age), rhabdomyoma tends to be the type of benign tumor encountered.
Back in the 1990’s, Paula did have a short episode of a heart rhythm problem called atrial fibrillation.  It resolved quickly on its own. Her doctors don’t think that her current and past symptoms were related, but how long she’s actually had this tumor is unknown. She now believes that her acutely distressing symptoms in the spring had “probably been building for the past year.” 
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But she’s now feeling optimistic about ongoing treatment down the road:
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“In 10-15 years when I’m in my 70’s, they will be able to do a Trans Aortic Valve Replacement (TAVR), which is done through the groin (not with open heart surgery), and replace the valve that would then last into my 90’s. With no other heart or artery issues, I won’t need another open heart surgery or have a recurrence of a PFE (it’s possible, but very rare).”
At just four weeks after her open heart surgery, Paula won’t be hiking the Camino right away, but she hopes to return to her previously active life soon. She’s always loved being outdoors, especially bicycling, hiking, kayaking and RV’ing in national parks. Her indoor activities included yoga and gym workouts 2-3 times a week.
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Already she’s back on the treadmill twice a day for 40 minutes, and she’s following sternal precautions to make sure that her breastbone heals completely from surgery:
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“I’m still new in this process, just four weeks post-op. At my follow-up appointment this week, the cardiologist and I were pleased so far with my recovery and outcome. I will also be attending cardiac rehabilitation to make sure I am doing everything right. I don’t want to pop the wires in my sternum!  And I’m open to learning everything I can, recovering quicker, and having baseline measurements for my pulse, oxygen level, heart rate and any atrial fibrillation that might show up. I also want dietary information now that I’m on the other side of 60.

“Because I was ‘young-ish’ and in good shape, and also because mine is a one-off kind of benign tumor, my recovery has been easier than I thought it would be. I mostly handle pain with just Tylenol. And I don’t worry about my chest scar. I’m figuring I’ll be in cardiac rehab for a bit, and doing more healing to be ready for 2020.

“I try to live a healthy life  – but I am not perfect; I like a nice cocktail and my favorite snack food is any kind of salted chip!

“My spirits are good, and I’ve learned a lot about something I knew nothing about – heart problems.”

Normal aortic valve/fibroelastoma image © 2017 Mayo Clinic
Yellow fibroelastoma on blue background © 2010 Future Medicine Ltd.
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SEEKING MAYO CLINIC RESEARCH PARTICIPANTS:    Mayo Clinic in Rochester, Minnesota is recruiting participants for an observational study to try to understand how and why benign heart tumors form.  If you have been diagnosed with a benign myxoma heart tumor, and would like to help by participating in clinical research on this diagnosis, learn more here. Dr. Joseph Maleszewski is the study’s lead author.
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Q:  Have you or somebody you love ever been diagnosed with a cardiac tumor?

NOTE FROM CAROLYN: I wrote much more about recovering from many types of heart disease in my book, A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (and use their code HTWN to save 20% off the list price).

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See also:

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Need a translator for some of the cardiology terms here?  Check out my patient-friendly, jargon-free glossary of hundreds of complex abbreviations and terms.
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2 thoughts on “A tumor? In my heart?!?

  1. Carolyn, you are an awesome resource for women and a passionate advocate who inspires others. Not to mention an incredibly gifted writer.

    Kudos to you and all the women of the world! We must all have our voices heard to have parity and gender equity in research and treatment. Speak up to all those you know! Be sure to share her blog, book and message to your doctor, nurses, friends…. think of every woman you know who could benefit from heart research… your mother, sister, friend, daughter, niece, etc.

    We are half of the population for crying out loud!

    Liked by 1 person

    1. Thanks so much for your kind words, Paula – and that ‘speak up’ call to action for all women out there to have your voices heard.

      And thank you especially for sharing your own heart tumor story here. Hope your cardiac rehab experience will help you continue to heal magnificently for 2020!

      Like

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