Doctors suspect another pituitary tumor, so why isn’t surgery an option?
A columnist explains why surgery to remove a recurrent tumor is complicated
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In 2020, I had transsphenoidal surgery to remove a pituitary microadenoma that was the result of Cushing’s disease. In simpler terms, doctors removed a 4 mm tumor through my nose.
Later, due to a recurrence of Cushing’s disease, I had another pituitary tumor. This time, though, I wasn’t a good candidate for surgery, but that might change later on. So what determines whether someone is a good candidate for this type of surgery, which is called a transsphenoidal adenomectomy, to treat Cushing’s disease?
Through labs, doctors will know if you have a pituitary tumor. Your cortisol will be elevated in your saliva, blood, and urine, though not necessarily in every single test. Your adrenocorticotropic hormone (ACTH) level might also be abnormally high, as well as levels of DHEA sulfate and testosterone. From there, it’s time to get an MRI to see if doctors can locate the tumor.
Imaging
It took me about 15 MRIs to locate my first pituitary tumor, but it was relatively easy to see once we found it. It looked a little like a shadow that was repeated in several images. Many of the places I went to didn’t do a proper MRI to see it. Some didn’t get the right pictures, while others administered the contrast too quickly. These tumors are incredibly tiny, so it’s important for an MRI to be exactly right.
From there, we needed confirmation of the tumor. A lab technician, my endocrinologist, and a neurosurgeon all confirmed that the spot was indeed a tumor. Along with my labs and proof of symptoms, I was able to move forward to surgery.
The second time around is much more complicated. Due to my labs, and the return of my symptoms, we’re positive a tumor is there, and I’ve been medically treated for it for several years. However, due to my previous surgery, 10% of my pituitary gland was removed, which makes an already small target area much smaller.
Lab techs and even my endocrinologist have seen what they think is a tumor (or tumors, as they believe I have two). However, my pituitary gland is very tiny, and due to surgery, it has changed. Those changes can also cause shadows, which might look like a tumor even if there isn’t one. Therefore, the surgeon needs to be 100% certain that the shadows are a tumor rather than surgical changes to the pituitary gland.
Often, this can be figured out by taking imaging over time and observing whether the spot grows or not, and by comparing the MRIs over a long period of time. This is why it could take months or years before a second surgery would be viable for me. In fact, because part of my pituitary gland was removed, we’re not even sure if surgery will ever be on the table because the imaging might not be 100% clear.
Exploratory surgery
At first, I wondered why we wouldn’t just dig in if we already had a potential location of the tumor. My doctors explained that what I was suggesting is called exploratory surgery. If they went in and the spot wasn’t where the tumor is located, they’d explore my pituitary gland to try to find it. If they couldn’t locate it, they’d scrape around the pituitary gland to obtain any tumor cells present. But as I mentioned, the tumor is very small and can be easily missed. They’d also have to avoid scraping too close to veins or other areas that could cause damage, and a tumor could easily be hiding there.
Since it’s not a process in which they open the head, but rather go through the nose, it’s difficult to simply find a tumor once they’re in there. My surgeon said a high percentage of exploratory surgeries fail because even if they do manage to locate a tumor, there’s no guarantee that they’ll get every piece of it. If a surgery fails, cortisol levels won’t drop, and the patient will have to go straight back to medical treatment. Basically, in my opinion, it requires having to go through all of that stress for potentially nothing.
People are often confused when I tell them that I’m just living with a tumor. They want to know why I wouldn’t just have another surgery. The answer is that it’s complicated! At this point, if the option were presented to me, I’m not even sure I’d want to do it. Because I’ve had a tumor grow back already, there’s a chance that it’d return a third time, which would require us to repeat the process all over again.
I have mixed feelings about surgery because of the possibility of recurrence, but I deeply trust my healthcare team and will continue to keep an eye on my silly little tumor until we have a definite plan of action to take it out, if that day ever comes.
You can also follow my journey on TikTok and YouTube.
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.
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