7 ?’s for 3 patients – Cait

Can you tell me about the day you were diagnosed? What led to your first appointment and why did you get checked out initially?

So, it wasn’t really like a day that I was diagnosed. It was kind of over a week span.

I went to the emergency room and wasn’t feeling well. I had symptoms over two years and saw multiple doctors, but I wasn’t feeling well that night and they thought I had appendicitis. One of the surgeons said no something is funky here on her CT scan. I don’t want to touch her, let’s have her get some work done. I did that, then a week later I saw an endocrinologist. She told me I had this super rare tumor. I was like, “oh, okay now what?” She said she couldn’t help me. She set me up with another team and it took about a week and a half to get diagnosed.

How did your doctor explain what you had?

She didn’t give me a lot of information because I don’t think she was well versed. She kind of just said “you have a pheochromocytoma”, when I had a paraganglioma so she was actually wrong in the type of tumor it was. Close enough! She said, “I can’t take care of you” so she referred me to the University of Pennsylvania.

When I went there they obviously gave me a lot more information and they told me you have a paraganglioma, it’s a super rare tumor and it’s causing all of these issues that you’ve had in the past two years. Looking back at your records all of these symptoms were caused by this. They explained the catecholamine’s and epinephrine and my levels were all over 10 times above normal!  So it made sense why I was feeling all of these symptoms. It was clarity in a sense, once I got to University of Pennsylvania, but before that it was kind of a week and a half window of “I have a rare tumor, but what do I do with it?”

What were your initial feelings and thoughts when you were told? How did you feel in the days following your diagnosis when you could have a bit of time to process it?

It was scary obviously. I have a medical background so I’ve heard about a lot of medical issues, but this was something I had never heard of. It was really scary to dive into this unknown but once I got a little more information on it, not that it was easy to comprehend, but it made a bit more sense to me.

It was hard. No one that I knew had been through this, I don’t even know anyone that’s had cancer, let alone a rare tumor. I felt isolated and alone and unsure. I was still having my paraganglioma attacks so that just ups all of those hormones that make you feel anxious. It was a hard time between getting diagnosed.

It’s a typical pheo para story in a sense that you go through all of this time with symptoms without being diagnosed but I hadn’t even heard about it. No one mentioned it, it wasn’t up for discussion in the two years that I was seeing multiple different doctors.

The unknown was the scariest part.

How did your family members or friends feel when you explained your diagnosis?

I didn’t tell a lot of people at first. This was something I kept really to myself until weeks after my surgery until I told my fiancé, my parents and a handful of my closest friends. How they reacted was basically the same, they were all super supportive. I have a great support system which isn’t something everyone has, so I’m grateful for that.

They were scared. They did a really good job of putting their anxiety and how they didn’t know much aside to step up and support me. I didn’t know what that looked like at the time and neither did they. It was all new to everyone so I give a lot of credit to the people that were closest to me at that time, especially my fiancé, as he was literally my strength from March when I was diagnosed through the end of that summer when I got my genetic mutation diagnosis.

That whole process was exhausting and my support system was awesome. They didn’t understand and some of them still don’t fully grasp completely what a paraganglioma is. This is something I have to deal with for the rest of my life, some of my friends are like oh, this is surgery and then it’s done.  It’s not quite that easy, there’s a lot behind it. They were very supportive, though, which is wonderful!

What are your thoughts on the info you found online about pheo para topics?

There wasn’t a lot of information to be found.

There’s a bit more now a year and a half later, but it’s still not a lot. I found it informative, but it’s a lot of big words.  I have a medical background so I understand a lot of the terms, but someone that might not be from a medical background probably has trouble understanding it all. It was informative, which was helpful, but it’s also scary to read it! Reading ‘rare tumor’ and all of these things it’s doing to my body, risks with surgery and everything else is a little bit overwhelming to take in.

I don’t know if it’s the information online that needs to be more understandable. I think it’s the doctors that patients go to see that need to be able to explain it better.  The doctors I had at PEN did a great job because they specialize in it. They have a whole group for neuroendocrine tumors. Doctors just need to be more proactive about understanding that patients that are at that level of being serious enough to see a doctor for something like this understand their symptoms, probably even better than the medical professional that is discussing it with them. I feel like they can be a bit more understanding and open to looking outside of the typical things.

What advice would you give for someone who has just been diagnosed about how to handle the mental aspect of diagnosis?

Once you start the process of going to see doctors for your symptoms, I waited a year, I would say take the steps you feel you need to take.

You have to advocate for yourself, especially if you don’t have someone to advocate for you. A lot of doctors don’t understand this. My PCP didn’t even know what a paraganglioma was! Push information and getting testing done, they can be simple tests to start.

Once you get a diagnosis, whatever that may be, reach out to others who have gone through what you’re going through. Through Instagram, through Facebook. What I did was search hashtags and found resources. I have people reach out to me through Instagram pretty often. Just reach out to someone, it doesn’t have to be a doctor, it could be family, it could be another patient that you find online.

Ask questions. I didn’t really do that until way after my surgery and I thought I should have done that sooner so I would know I’m not alone. That’s the hard part with this, it’s a rare condition. You feel super alone and isolated but although it’s rare, there are people out there who have gone through what you are going through. Reach out and ask for support. There are a lot of resources available so use them.

How have you been since your diagnosis?

It’s been about a year and a half since my diagnosis and surgery. The first six months were a whirlwind, I wasn’t anywhere close to where I am now. At this point, I’ve come to understand a lot more and come to terms with the journey I’ve gone through.

Now I am looking to the future. Now that I’ve wrapped my head around it, it wasn’t a week and it wasn’t a month but almost a year before I could really wrap my head around what to look forward to and what was behind me.

Now, I do a lot of work with the Pheo Para Alliance, I run their Instagram, I do a lot of volunteer work and that’s something that’s been really beneficial for me. I love to work with other people and support them in ways that I was supported.

I’m doing well. Medically, I get my yearly check-ups and I’m feeling pretty good. As everyone who’s dealt with this would know, you’re just a completely different person going through these symptoms so to feel like myself again. I’m in my late 20’s, but I feel like I’m in my early 20’s with all of the energy I have the ability to do things again. Before, I just wanted to sleep all of the time. I didn’t want to do anything. Now I can do things and it’s great.

Obviously, I worry about future tumors, I get my testing yearly and try to put that in the back of my head as much as possible because if I don’t it’s hard to live day-to-day life. If you’re constantly waking up worrying about getting another tumor it makes it hard to wake up tomorrow. I think it took a while to figure that out, through therapy, talking to people, self-reflection and a lot of writing.