October was dominated by travel and doctor visits to discuss follow-up plans regarding the residual tumor. Much of what was discussed is good news, tempered with bad news and overshadowed by an unknown prognosis. I met with my ENT and neurosurgeon in California mid-October for my three-month post-op appointment. My CT scan and sinus scope revealed no infection. I watched on a nearby monitor as the ENT put a camera up my sinuses. I could see firsthand where he and Dr. Kelly performed the surgery (modern technology is so cool). I appreciated the doctor's willingness to include me in this procedure, and I am grateful for the opportunity to look into this area. I was amazed at how clean everything looked. He explained the sinuses' anatomy and pointed to all the areas that were affected as a result of the operation. There is still an area on the bottom sphenoid that is healing and that was a bit gnarly, but overall my doctor said the sinuses look very good. I was instructed to continue my antibiotic ointment for another month and the sinus rinses indefinitely.
I also had an MRI while in town, and the results were discussed with my neurosurgeon. Both tumors are stable, which is good news, but radiation treatment is still recommended to begin in 6-12 months because the tumor is expected to grow again. Dr. Kelly will consult with Saint John Health's oncologist to determine what he believes would be the best treatment plan. Unfortunately, there is nothing else to update about this visit because I am still waiting for more information.
My other follow-up appointments were with MD Anderson's oncologist and my endocrinologist, and both were very informative. The words that resonated with me the most from my discussion with the oncologist were, "This is a tumor you don't want to mess around with..." meaning this is serious, and I should take the necessary steps to stop its regrowth before it invades critical structures. I've read various publications about radiation treatment and its effect on the pituitary gland. The appointment with the oncologist was insightful as to why I might consider one type of radiation over another. The options for treating my residual tumor are proton beam therapy, stereotactic radiosurgery, stereotactic radiotherapy or somatostatin analog.
Here's what I discussed with both doctors:
Somatostatin Analog: This is not an option available to me because my tumor is a partially functioning tumor. My growth hormone levels are normal and so there is no excess hormone to control. Tumor growth is the only current concern. The cells in my tumor are different than a typical acromegalic tumor and it would most likely not respond to medicine.
Stereotactic Radiation Therapy: This is six weeks of daily radiation and a common treatment plan for pituitary tumors when the tumor is near the optic nerve. My tumor is a safe distance away from the nerve, so it is not the best treatment option. However, should the tumor grow in the next six months, I'll need to consider this.
Gamma Knife Radiation: This is the type of radiation that MD Anderson is recommending. It uses a higher dosage of radiation than the other options, which is why it would not be used if the tumor were close to my optic nerve. The procedure takes one day and involves three doctors: an oncologist, a neurosurgeon, and a physicist.
Here's a video that explains what to expect with Gamma Knife radiation:
Unfortunately, my pituitary is in the target field of radiation because the residual tumor is on either side of the gland. This means I will most certainly lose function as a result of treatment. Even though there are risks with the gamma knife (stroke, secondary tumors, and damage to critical structures in the vicinity), the doctors feel this is the safest and most effective way to stop the growth of my tumor. Hormone replacement will be needed.
Proton Beam Therapy: Another option that is available but not recommended by the oncologist. This is also a six-week treatment plan, and it's not as effective as the Gamma Knife. There's no benefit in choosing this over stereotactic radiotherapy because the result is likely the same.
I am undecided about where I will ultimately have radiation and what plan I will use. If I have my treatment in Houston, I will have to consult with a neurosurgeon, and I don't have one at MD Anderson. I prefer to stay with my current neurosurgeon since he is most familiar with my case. I am upset about the prospect of losing my pituitary function and the complications that could come about as a result of radiation. It is a difficult decision - a catch-22 in so many ways. If I don't have radiation, the tumors will continue to grow. Pituitary adenomas are typically slow growing and not aggressive, but mine has already expanded into the cavernous sinuses and is abutting both arteries. Adjacent to each tumor is the right and left temporal lobes. Also, the doctor discovered I had dural invasion during my most recent surgery. The left-sided tumor is a safe distance from the optic nerve at the moment, but if left alone, it could grow against it and cause blindness. The behavior of the tumor is unpredictable.
I am struggling with accepting the need for radiation and have difficulty convincing myself this treatment is needed. I have no health problems. If the tumor stabilized, I could live with it, but apparently, the risk of regrowth is too significant. I will be revisiting this and possibly begin treatment in the spring.
