*this was in 2010, later in 2017 the WHO would make an official change in classification removing the word benign from pheochromocytomas and paragangliomas due to the high rate of recurrence and unknowns. They are now called non metastatic or metastatic, requiring lifelong yearly follow up.
I got check ups at six month which became yearly intervals, same drill each time… the same old 24 hour urine test. Each time, I appeared to be ‘normal’. It became monotonous, going to my endocrinologist’s office every year just to be told that there was nothing wrong with me.
I was experiencing rapid weight gain, I began collapsing, my heart never went back to normal. It was always pounding, I was always sweating, and I was in so much pain.
Despite my symptoms, pleas for help, shouldn’t it be different this time? I had already had this disease, I’m no longer ‘rare’! So why isn’t anything else being done?
I remember my family doctor put me back on the beta blocker I’d been on pre surgery. I didn’t know at the time that being put on a beta blocker for the heart on its own is dangerous for a pheo. When I saw my endocrinologist, she agreed it was suitable for my heart rate issues.
I remember thinking, but why would I be put on a beta blocker if there’s nothing wrong with me? Why would any doctor put a 20 year old on a heart medication if they’re fine? When will I come off of it? So many unanswered questions...
I felt like I was back at the beginning, where the doctors just didn’t believe me. With all of the tests and technology available, surely there’s something that exists that can find the problem? Nope, you’re “fine”.
I eventually realized that the symptoms don’t matter, all that matters is what they know and believe to be true. What they believed to be true is that the pheo couldn’t come back, and I had developed anxiety after my surgery.
Any time I’d bring up a new symptom, my endocrinologist would think for a moment… instead of widening the search or doing a different test, she’d say things like “that sounds like low blood sugar, try eating a cube of cheese”
Or a sympathetic look followed by a “yeah…” but no answer to my question and a quickly followed “ok see you next time” I couldn’t take it anymore, if she says I’m fine, I’ll just act fine.
It was almost here, the five year mark of pheo free happiness. I just had 6 more months to go… but more importantly, my birthday was almost here!
My husband and I planned to go to vegas and do something fabulous and over the top for my twenty fourth birthday, every birthday has so much underlying meaning to us and we wanted to go big! Some of our best friends were coming as well, we were all so pumped!
There was just one thing to take care of before we went away… the 24hr urine test. I had an appointment with my endo that I kept having to push, I was just way too busy at work. So finally I knew I had to get it out of the way, sit down in her office, be told I’m good to go, congratulations and maybe discuss not going there as often 😉
We were greeted by one of the residents, he started right away which I appreciated since I had another appointment that day (lots of things to take care of before the trip in 2 days!)
He asked me the famous question, “How have you been feeling?”
I fibbed a little, I told him I was feeling just great (why go through the trouble of telling them how I feel if no one is gonna believe me for the fifth year in a row?) I think a small part of me began to believe I really was fine. So the next part came as a surprise.
He again, got right to it, and began to say “It’s high”
“What do you mean? What’s high?”
He responded by explaining again, it’s high. I knew what he was referring to, he was referring to the amount of adrenaline in my body.
I asked him how high? (wishful thinking) maybe it’s not so bad.
We went back and fourth like this for a little while, him explaining to me that it’s very high. Which could mean only one thing…
my pheo is back
I just wanted to leave, I didn’t want to acknowledge what was happening.
My husband thankfully chimed in and asked the remaining questions, whether or not it was confirmed etc. What do we do next..
All I could think was, I can’t do this again…
They would have to do imaging, tests, the whole kit, to find the tumor, but yes it’s definitely there. The numbers don’t lie.
I knew it, why didn’t they listen to me sooner? I was so full of rage, and fear, and all I could think was… I can’t do this again. I can’t I can’t I can’t.
Surgery… Trauma.. Oh no, I can’t..
I said that a lot to myself that day. I was completely void of emotion, I literally just couldn’t make sense of it. I felt I handled my first experience so well, and everyone always says what courage and strength and positivity I have… I didn’t feel one bit courageous or strong in that moment. I felt small, and utterly defeated.
My endocrinologist came in, and I quickly switched the subject to our trip, I honestly couldn’t handle talking about it to her after having complained about my symptoms for so many years and having been ignored. Why NOW! Why did it take so long for them to suddenly come up with an answer, why now when my life is so normal. I don’t even want to face her. How dare she. Can I still go on my trip? They agreed, just to take it easy and don’t over do it, once i’m back we can start the treatments to prepare for surgery again. There was no acknowledgment of my previous attempts to be heard, no apology, of course.
We went away, and I have to say… it was the most confusing time I have felt, ever. I wanted to have fun, and enjoy myself, at the very least for the benefit of my friends. I was in shock, but I did end up having a fabulous time, despite an unexpected ambulance ride to the ER after getting too excited in Tory Burch. I was surrounded by love and some of the most supportive people in my life… but honestly I was just dreading going back to shit storm that was waiting for me.
I had more tests and imaging done, we went back to the small white office to see my endocrinologist. We would find out more details about the location of the tumor.
but we were told there was more than one.
I was numb. Shut off. Unable to voice my raging thoughts.
My mind: “HOW CAN I HAVE MULTIPLE TUMORS, WHERE DO THEY EVEN FIT, IS THIS EVEN POSSIBLE, WHY?! I WASNT EVEN READY FOR JUST 1!”
My body: Still, composed, shut off.
My stomach dropped, not just like a little punch in the gut… like my stomach dropped and got run over several times. I hear my husband ask my prognosis. Why is he asking that? I’m not……… dying, I just have pheochromocytoma, I did this before, it’s no different. It’s benign they said. I’m fine they said.
My endo responded by saying “There was about 5% chance that this would come back, we weren’t expecting it, especially since the genetic testing proved negative. However in the rare cases that do recur.. the only information we have to date is a 1-5 year survival once it’s metastisized“
Metastisized, all these new cancer words. okay so that just means it’s spread? So it can still be benign?
boy was I ever wrong.
Basically there’s three ways of looking at pheochromocytoma, a single primary tumor, although still very dangerous, can be cured with surgery but still needs lifelong follow up
Then there is the odd tumor that can be malignant, a non metastatic tumor that gets tested once taken out of the body. malignant tumors are said to be very rare, about 5% of pheos are malignant (cancerous)
Then there is pheo mets, (metastisized) which is the lucky winner for me. This means it’s malignant, it’s cancer and it is aggressive. I hear the word aggressive often.
There is no way of explaining how someone feels when they are given a bad diagnosis, any diagnosis. I can’t even begin to explain how it feels to have a diagnosis of recurrent pheochromocytoma, and then be told I ALSO have cancer… and the whole one to five year thing… icing on the cake
It’s been five months since my diagnosis of recurrent metastatic pheo cancer, and all I can say is that was the worst day of my life.
What I choose to do with it now… take my health into my own hands, and receive the best care possible. I am not giving up, I honestly thought I would… I think everyone has that moment of weakness.
Now, I wait. I wait until May, and hope to god that my surgery proves successful. The problem is with pheo mets, is once you have it… They can ‘manage’ the disease’, but there’s no cure. The only cure for this disease is surgery but not once it’s spread
This is why early detection and diagnosis is so important, so that it doesn’t get to this point and can still be effectively managed.
To say these last five months have been easy… I would be a horrible liar. They have been absolute hell.
Did we give up? Ab-so-lute-ly NOT!
We are doing everything possible to prepare, and just simply enjoy the small victories.
I am blessed to have a husband who makes it his priority to make me comfortable, he will do anything to remove any stress off of me even though he is also ill. He is the most incredible person I know and he is the one who gives me this strength, without him.. I would still be strong, but with him… I am unbreakable. A tribute to my favourite caregiver here ❤
Thank you to all of my amazing family, my true friends, and my unbelievable colleagues for your support, recognition and love. Without all of you… I’d be a little less fabulous 😉
Update – In this particular page I had listed at the time I had eight tumors, at the time this was the amount they could see and were confirmed. In May 2015 once they operated, they could see that the mets were a little more extensive once they opened me up, it’s difficult to put an exact number on the tumor count once they spread. It was estimated over 50 lesions. They removed quite a few, but I still have a few confirmed on the liver arteries, and a few more around the kidneys and in other areas: Results
I have since had MIBG Radioactive therapy, you can read about that there.
🙂 Since I wrote this I had an opportunity to share my story with the incredible ‘super hospital’ that has been treating my incredibly complicated disease. You can read the article here!
#pheochromocytoma #youngcancer #raredisease #awareness #iamrare
Miranda thank you for your incredible courage and willingness to share your experience and ongoing journey, you truly are fabulous and yes a gorgeous soul. I wish you well my friend and I am so very grateful you have a wonderful supportive and loving husband! Serge is the best! Love you both!
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You are one of those amazing people who help me get through it, I appreciate that so much! Cheers, I can’t wait to be able to enjoy a ‘nice’ glass of wine with you once I’m feeling a bit better 😘
Oh my….looks like serge will have to buy you more shiny things to keep you focused😉
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Visiting from the link you shared on the pheo/para support group. Thank you for putting your experience out there for all to read and for being such a positive (and realistic) and fabulous voice for those with these not so fabulous tumors. My husband is 33 and we’ve just passed the first year of his tumor removal anniversary. He tested positive for the SDHB genetic mutation and we’ve recently learned our 3 year old son has it, too. Sending positive thoughts and prayers your way as you battle your mets!
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First off let me say… Happy removal-versary! 🌟🙌🏼 Thank you Britney for taking the time to read through my own personal journey when you guys are fighting your own. I am writing this blog for every superhero touched by this disease, and the incredible people supporting them. I too am sending every bit of love to your family and we will have you in our prayers. 💗💗💗
Miranda, I hope you are feeling well. I just can’t help feeling so sad about your situation. I guess I can relate because I am going through a similar experience too. All the range of emotions hit home.
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Hi sweet Erica, although I would be lying if I told you I’m “fine”… it’s a little more difficult for me to write & communicate due to fatigue & pain and various other reasons – but I can assure you I smile everyday, and I CERTAINLY never lose hope.
The best advice I will give you in the beginning of your unique path is to be doing exactly what you’re doing right now, prepare to become your own advocate because no one will fight better for you than YOU. Find ways of making things easier & more comfortable, track everything, (get a diary app, log your symptoms, your meds, your BP & HR). That way you can have a leg to stand on & actual info that makes sense when speaking to your doctors.
Don’t ever settle for something because it’s too rare, or it’s “Better than it was before”, or “there’s no other options”.
Rare doesn’t mean it doesn’t exist, it just means it’s less often seen – it can still happen, so keep pushing for answers. I’m in the situation I’m in because I was ” too rare ” for it to be that.
Just because your situation is a little better than it was before, doesn’t mean you should settle for that. YOUR life is worth more than better than before, yes?
And last, there’s always options. You just need to find them. I did. They may not be pretty, but they’re there. Somewhere. With enough minds & doctors & thoughts & collective thinking, if you have a good relationship… you will think of something.
Keep asking questions, keep fighting your way through, and more importantly… keep being fabulous 😘💖
My eyes are literally closing as I’m writing this, I really hope I don’t have a billion errors in spelling MLOl!
Xox – miranda