You will be the first to know if your symptoms return after surgery, or if they never went away in the first place. This can be disappointing. Listed below are options that can help. Don't wait! Talk to your doctor right away about how to take that next step toward making it better. Remember, you are your best advocate!
Recurring or Persistent Cushing's Disease
I was very sad that the problem was back. I was angry and upset that I now had to go through the process all over again.
What is the difference between recurring and persistent Cushing's disease?
Although transsphenoidal surgery (TSS) is the first choice of treatment for Cushing's disease, sometimes it may not work. Maybe your symptoms did get better for a bit, but now are returning. This is known as recurring Cushing's disease.
If your symptoms never went away after surgery, you may be experiencing what is known as persistent Cushing's disease. Either way, this can feel defeating, but there are steps you can take to reduce your cortisol levels.
I knew my Cushing's disease was back, I could tell from the symptoms.
Repeat Pituitary Surgery
If the first surgery failed, why do it again?
If you had TSS to treat your Cushing's disease and your symptoms have not improved, your doctor may suggest doing it again. Or your doctor may suggest a second surgery if your symptoms did improve for a bit, but now are returning. In some cases, perhaps the tumor couldn't all be removed due to its size or location on the pituitary gland or has even grown back. Your surgeon may want to try to remove more of the tumor the second time around.
Another reason for a failed surgery is that perhaps your surgeon has not performed many TSS surgeries. This is a very specialized procedure, and it is important to find a neurosurgeon who is experienced in this specific procedure.
Medication
Medication
If you still have symptoms after your first surgery but can't, or choose not to have a second surgery, then some medications that lower cortisol levels may help. These medications lower cortisol in three different ways: by targeting the tumor on the pituitary gland, stopping the adrenal glands from making too much cortisol, and blocking cortisol receptors throughout the body.
Learn about an FDA approved treatment for Cushing's disease that directly targets cortisol production in the adrenal glands.
You can also read how medications for Cushing's disease may help you control recurring or persistent symptoms.
Radiation Therapy
Controlling tumor growth
Cushing's disease may be treated by radiation to the pituitary tumor. This is most often used if the tumor cannot be fully removed by pituitary surgery. However, doctors may suggest this as a first-choice treatment if the tumor is aggressive or invasive, or if you are unable to have surgery.
Radiation controls the tumor growth and lowers ACTH, which then lowers cortisol levels. (Again, it all goes back to the cortisol pathway.)
Radiation therapy may take many years to be effective, which can be frustrating when you are dealing with symptoms that affect your daily life. Your doctor may suggest medications to help manage cortisol levels until the radiation takes effect.
Bilateral Adrenalectomy
Removing the adrenals
A bilateral adrenalectomy is surgery to remove the adrenal glands on both of the kidneys. It's usually only recommended if other treatments are not successful and you are extremely ill. This is a serious decision that needs to be made with your doctor. Without adrenal glands, your body cannot make cortisol at all, so medications will be needed to replace the important hormones that your adrenal gland makes.
Knowing there were options to treat my symptoms was uplifting for me in a sense. I had confidence in the team to solve this. A lot of optimism and positivity.
We get it, the treatment path for Cushing's disease can be overwhelming. No matter where you are in your journey, know that there are options. It may take time, but with help from your healthcare team, your quality of life can improve. Don't give up on your journey to wellness.
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