A little while after my first surgery, I started feeling a lot of the same symptoms to when I first got diagnosed. I knew there was something not right. Mind you, by this point I had been genetically tested for a few mutations that may have caused the pheo, and I had tested negative. So, there’s that. This meant that according to the specialists, there was little to no chances of it coming back. Especially since the first tumor was benign, (non cancerous)
I got check ups at six month and then 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. Despite my symptoms, and 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 kind of felt like I was back at the beginning, where the doctors 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”.
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 fantastic 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 lovely 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?)
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 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 perfect. I don’t even want to face this person. . 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 and prepare for surgery again.
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 just couldn’t, I couldn’t do it. I ended up having a fabulous time, because how can you not when you’re surrounded by love and some of the most supportive people in your life… but I was just dreading going back to shit storm that was waiting for me.
I had the tests and imaging done, we went back to see my endocrinologist to find out more details about the location of the tumor.
We were told there was more than one.
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. Why is my husband asking that? I’m not dying, I just have pheochromocytoma, I did this before, it’s no different.
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 cases that do recur.. the only information we have to date is a 1-5 year survival once it’s metastisized”
Metastisized, okay so that just means it’s spread? So it can still be benign?
Was I ever wrong.
Basically there’s three ways of looking at pheochromocytoma, a single primary tumor that is benign, although still very dangerous, not considered cancer.
Then there is the odd tumor that can be malignant, which is tested once it’s taken out of the body, malignant tumors are very rare again about 5% of all pheos are malignant (cancerous)
Then there is pheo mets, (metastisized) which is the lucky winner for me. This means it’s cancer, it’s malignant and it’s 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 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 pheo mets, 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… the only effective treatment method is surgery. They can ‘manage’ the disease’, but there’s no cure.
This is why early detection and diagnosis is so important, so that it doesn’t get to this point and can be 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 my undying strength, because without him.. I would still be strong, but with him… I am unbreakable. When I talk about support, I’m referring to my family, and you just can’t make it through something like this without them. 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. 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