Skip to main content

Remission? Not so much...

So I had my first post-op appointment today with my Neuroendocrinologist. I went in expecting bad news - I've had a bad feeling that something isn't right the last few days. I had a dream last week that the pathology of the tumor came back negative, meaning they didn't take the tumor out. I brushed it off, because I tend to think worst case scenario, but it turns out I was onto something.

My endocrinologist said that the neurosurgeon was very pessimistic about the first surgery being a cure. He had trouble seeing a defined tumor in the gland, and he took out a piece of questionable tissue that turned out to be nothing significant, so that means the tumor is still there. The weight loss after surgery was probably due to disturbing the tumor enough so that it shut off, but now the tumor is recovering from the trauma of surgery and is working again. My legs are swollen, my face is puffy, and I've put back on 7 of the 11 lbs I had lost. My blood pressure was high and my face is red again - all signs point to Cushing's.

I am not surprised by this news at all - I knew that the process from testing to surgery seemed too easy. The next step is to do some more cortisol tests to make sure the numbers are still high (which they probably are, I had 2 high numbers and one normal since surgery), then go back in to remove the whole right side of my pituitary gland. They want to remove the entire half that showed hypercortisolism because they cannot find the defined tumor they saw on the MRI. I might need artificial hormones for a period of time, but my body should recover and the left side of my pituitary gland will eventually learn to take over.

The good news is I WILL be cured. It is just a matter of time. If the surgery to remove half of the gland doesn't work, we can try radiation, and if that doesn't work, they can remove my adrenal glands so my body has no way of producing cortisol at all.

I will have more news and a possible surgery date next Monday after meeting with the surgeon again.

Comments

amazon audible

Popular posts from this blog

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…

Cushing's Awareness Challenge - Day 12

Today's post is a little bit out of my comfort zone. We're going to talk about weight.
One of the most common symptoms of Cushing's is weight gain.  Some people only gain 30 pounds, some gain hundreds.  I always have a hard time quantifying the exact amount I gained because I was a teenager, or even a young child when I first had Cushing's symptoms.  My best guess is about 150 pounds, only because that is close to what I've lost after treatment.  
When you weigh almost 300 pounds, people treat you differently.  I know this, because I've also seen how people treat me now.  
I was obese, due to Cushing's, throughout college. In my opinion, this is one of the most difficult times to be heavy. My first year of college, I was often left out of plans.  My two roommates were very close, and I always felt like the third wheel.  One of them even left a letter she had written to a friend out for me to see.  It was one of the cruelest things I had ever read.  She was wis…