I met with my endocrinologist at M.D. Anderson this week, and I am still waiting for a couple more lab results to come in, but it appears my pituitary gland has survived the second surgery. This is great news! The doctor and I discussed many things, including the tumor pathology results and future treatment options.
As I mentioned in previous postings, I have a partially functioning tumor. A partially functioning tumor randomly excretes excess hormone (GH and prolactin). This makes it unpredictable in terms of growth and undetectable in blood work because hormone levels can be normal even though tumor is growing. This is precisely what has been happening in the past year. In August 2010, the tumor in the left cavernous sinus measured 8mm x 3mm. In March 2011, it measured 11mm (1.1cm) x 6mm, and my pre-operative MRI in July showed the tumor was 15mm (1.5cm) x 8mm. It was confirmed during surgery that the suspicious area in the right cavernous sinus is a tumor that invaded the dura mater. Even with tumor enlargement and regrowth, my hormone levels consistently remained in normal ranges with only slight increases over time. The tumors were extremely fibrous and not easily removed. What remains in the cavernous sinus (about 40% residual) is inoperable and will likely need radiation. It is unknown if medication can be used to stop the growth because it is not a typical functioning tumor. My endocrinologist is taking my case to a pituitary conference next week to discuss the management of my tumor growth with his colleagues. Among the options being considered is proton beam therapy, stereotactic radiosurgery, stereotactic radiotherapy, or somatostatin analog.
My pathology results returned positive for growth hormone and prolactin but also gave a percentage of something I didn't know about - P53 and Ki-67. It sounds as if I'm introducing a set of robotic twins. These are tumor markers used to define the behavior of a pituitary adenoma. I'd never heard of these tests before last month, or maybe I stumbled upon them in a medical article but didn't take note of it at the time. So what's the signifigance of P53 and Ki-67? The endocrinologist says my results (P53 = 1% and Ki-67 = 5%) indicate the tumor could become an atypical pituitary adenoma. According to the World Health Organization Classification of Endocrine Tumors, a positive P53 with Ki-67 over 3% suggests an aggressive invasive pituitary adenoma and they recommend careful monitoring for regrowth with MRIs. I asked the doctor if these numbers meant I would wind up with pituitary cancer, and he answered that it's not impossible but highly improbable. The diagnosis of pituitary carcinoma is rare and not typically diagnosed unless the tumor appears up in another region of the brain or body (again - unlikely in my case). This is good to know!
I also met with an Infectious Disease doctor while at M.D. Anderson. I'm still on oral medications for the bacterial and fungal infection festering in the sphenoid bone. The doctor feels it's safe to stay on oral meds because all of the mesh was removed, and most, if not all, of the osteitic bone was drilled out. So, I have been spared having to go on I.V. antibiotics. The final pathology report showed several different bacteria that grew on the cultures. Results of the fungus are still pending, but initial impressions under the microscope suggest it belongs to the Aspergillus species.
I'm so glad I went through the surgery - no doubt, it was absolutely needed. I would've been in a far worse situation had I not gone through the operation. This was the best course of treatment. My energy level is not quite back to normal yet, but I am feeling much better. I'm satisfied with the surgical outcome and am grateful for the doctors involved in my case. It was not easy to go back to California and have another surgery, especially after being told by three doctors in Dallas that my life may end in the operating room. It was a risky operation but successful in the right surgeon's hands.
Two words come to mind that describes my attitude right now: vigilant and trusting. If I could impart anything to my readers about this experience, I would say: don't let treatment decisions be driven by fear. Understand your illness and all treatment options; employ the best doctors to help; take time to plan carefully for optimal outcomes, and trust that your choices are the right ones. All of this makes a difference long-term.
Photo: My step-sister & I - morning after surgery.