Choosing a treatment plan was hard after a recurrence of Cushing’s
A columnist explains which of three treatment options they chose, and why
Much of my journey with Cushing’s disease has involved sharing my treatment options and choices with others in the community. This is largely because I had so much difficulty deciding on a treatment path.
Thoughts swirled in my mind constantly. What if I chose the wrong option and regretted it years down the road? I spent a lot of time talking with my doctor and various specialists to fully understand my choices and make the best decision for me.
When I was diagnosed with cyclic Cushing’s disease in 2020, I chose to have transsphenoidal surgery to remove my pituitary tumor. Doctors had been able to find the tumor on multiple MRIs, giving us a defined source. After the surgery, I went into remission and felt amazing — for about 12 months.
Last year, I was diagnosed with a recurrence — my tumor had grown back. Doctors are unsure if this happened because there were leftover tumor cells, or if I’m simply more prone to growing these tumors.
Even though my test results clearly indicate another pituitary tumor, doctors haven’t been able to locate this one on an MRI. Therefore, transsphenoidal surgery currently isn’t an option this time around, as there’s no defined source. I had to widen my aperture.
I was given three different treatment options.
My first option was exploratory surgery, in which doctors would basically be looking for the tumor. I met with two different neurosurgeons, as well as my endocrinologist, and they all thought this wasn’t a good option for me. They also told me that these surgeries are often unsuccessful in finding and removing the tumor, so it’s a high risk for potentially no reward.
That being said, I will continue to have MRIs annually and will eventually have surgery once the target is confirmed by my endocrinologist and my neurosurgeon. This could take six months or six years. It’s up in the air.
What are the risks?
The biggest risk is that my surgeon wouldn’t find the tumor, or would leave part of it behind. In that case, I wouldn’t go into remission. The surgery could also lead to complications, such as spinal fluid leakage.
My second option was radiation treatment to shrink the tumor. Although I was told I was a good candidate for this, the risks scared me too much.
What are the risks?
My neurosurgeon explained that radiation treatment could potentially cause my pituitary gland to shut down forever, in which case I’d have to take multiple medications to replace my pituitary hormones. For me, this was a big yikes. Maybe it’s just my fear, but this option seemed like more of a last resort for me.
I ended up choosing my third option: to treat my tumor with medication. I take spironolactone twice a day and 400 mg of ketoconazole at 8 and 10 p.m. I also inject Mounjaro (tirzepatide) once a week and take a bunch of supplements. It can be a little overwhelming to take about 20 pills a day, but I still think this was the best option for me.
What are the risks?
Over time, ketoconazole can lead to liver damage. To avoid this, I have bloodwork done every three months. If my labs start to indicate liver issues, I will reevaluate my options.
Because ketoconazole lowers my cortisol, there is always the possibility that my cortisol level will drop too low, resulting in an adrenal crisis. I have emergency medication on standby at all times in case this happens. I’ve also taught all of my friends how to administer the medication in case I’m unresponsive.
However, a crisis is unlikely in my case, as I’ve been working with my doctor to increase my ketoconazole dosage in small increments. In the six months I’ve been on the medication, I’ve only had one low, and it wasn’t close to being a crisis.
So far, I’ve seen a huge difference on medication. I was able to lose 11 pounds, and my swelling has gone down tremendously. I’m more in tune with my emotions and have more energy and stamina. I’ve even been able to use my wheelchair less often.
My lab results speak for themselves. Before I started taking medication, tests showed liver, bone, kidney, and thyroid issues, vitamin deficiencies, and more. Of course, the problems weren’t fixed overnight, but every time I get my bloodwork done, the results trend more toward the normal range.
A treatment plan is deeply personal, and every single case is different. Make sure to fully understand your options, and don’t be scared to get a second opinion.
Have you chosen a different treatment for your Cushing’s disease? Please comment below and tell me why! 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.
Hi! I also had recurrences, which was so disappointing, especially after feeling like a new person after my first transsphenoidal surgery. I opted for a successful second transsphenoidal surgery, which worked, but for a much shorter time. When I found out the tumor was back for a third time, I tried Metopirone, and after many trials & errors of dosing, it did work, but the side effects were terrible. During this time, I opted for radiation in December 2021 to get rid of the tumor once and for all. So far no side effects from radiation, and we are waiting for the tumor to be eradicated. (It takes 2-5 years.) For the last 13 months, I have been on Isturisa, and it has been a game-changer for me! No side effects, and it is working. I have normal cortisol levels. I only need to take 2 in the morning and two at night. Thank you for sharing your experiences!
Thank you so so much for sharing your story with me! I'm so glad your levels are normal. You're such a warrior, going through it three times! I really appreciate you sharing your treatment plans with me.