Grey matter
My tumor was growing back. Then it wasn’t. What’s a patient to do when the experts disagree?
(Note: Read the precursor to this post here.)
I suppose it was good news when a highly-respected and experienced neurosurgeon told me this week that my tumor didn’t appear to be growing back: but the problem was that just a month prior, another highly-respected and experienced neurosurgeon indicated the opposite. I felt less joy, more frustration.
Prior to this most recent assessment, I’d spend the last few weeks adjusting to the idea that I may need another brain surgery in order to remove the residual — and supposedly growing — tumor cells by my pituitary gland. That would mean another round of anesthesia, another few days in the hospital, another lengthy recovery, and another waiting period to see if they had, in fact, gotten all of it.
Part of me was at peace with it if another surgery meant stopping the tumor and Acromegaly, my hormonal disease which stimulates overproduction of a hormone called IGF-1 from the liver and causes all sorts of physical side effects. Another part still felt quite traumatized by the entire surgical process, including having a catheter inserted into me without prior warning. I knew I could get through it, but it didn’t mean I necessarily wanted to.
In March of last year, I started seeing an endocrinologist at a different New York City hospital after frustrations with the level of care at the hospital where I had my surgery. When I found out the month prior that some tumor cells escaped the surgery, my original doctor presented a few options, none of which sounded great: 1) A medication called Cabergoline that had a moderate success rate, but was known to cause mood disorders, and not ideal for someone like me with clinical anxiety and depression; 2) Daily injections of Pegvisomant, a hormone blocker that would reduce my symptoms and bring down my IGF-1 levels if used for…the rest of my life; 3) A radiation treatment to kill the tumor cells for good, but which takes an average of two years — yes, multiple years! — to take effect. The doctor wasn’t really nudging me one way or the other, and I didn’t understand what should come next. I decided it was time to move on.
My newer endocrinologist, who I’ll call Dr. K, came highly recommended by someone I knew tangentially who had a similar condition to me. My dad and I went to meet with her, and when I told her my previous doctor had mentioned radiation as an option, she asked my dad to leave the room. Dr. K doesn’t mince words, and she asked point blank, “Do you want to have children?” I said yes, I think so. “Then you don’t want to do radiation,” she said.
Dr. K led me to believe that the one-time targeted radiation treatment could render me unable to pregnant. This, I would later learn, wasn’t quite accurate. But once that idea was in my head, it was hard to shake. Suddenly I was forced to seriously contemplate how much I wanted to someday be a parent, whether I’d need to freeze my eggs, and more broadly, how this disease was permeating every part of my life.
Instead of skipping right to radiation, Dr. K recommended lanreotide, a once-monthly injection that’s supposed to shrink the tumor and lower IGF-1 levels. This wasn’t my first experience with lanreotide: I’d been administered it for a few months before my surgery to see if it would shrink the tumor in time for removal, but the results were negligible. However, Dr. K thought that I could have some luck this time around since the mass was so much smaller. And with that, I agreed to once again have these massive injections into my upper-butt area in the off chance they would help. She also recommended I try the daily injections of Pegvisomant for some short-term relief.
It’s hard to understate how menacing it is to inject yourself with a needle. Each day — after a 15-minute preparation process that involved transferring water from a syringe drop by drop into a tiny bottle filled with powder, slowly swirling the bottle until the powder dissolved, transferring the liquid back into the syringe and making sure there were no air bubbles — I’d point the syringe at either my stomach or thigh and wait a few seconds until I worked up the nerve to do it. My body screamed “No!” while my brain reminded it “We need this.” And now I was talking to myself. Good. Great.
After six weeks and little change in my symptoms, I decided I just couldn’t do it anymore. The mental and physical toll were just too much. And so I kept up with the lanreotide and hoped for the best. In the meantime, my boyfriend’s aunt who works at a hospital in Boston recommended I reach out to the endocrinologists there to see if they had any different opinions about my prognosis or suggestions for alternative treatments. On a sweltering September day, Ben and I took a balmy Bolt Bus up to Boston to meet with yet another endocrinologist who I’ll call Dr. L.
Dr. L isn’t just an endocrinologist, but a specific pituitary specialist. Our 90-minute meeting involved a lot of going over my medical history and records, but I did learn a few new things. As I alluded to earlier, she explained that radiation would not, in fact, render me infertile. It could, however, permanently destroy certain pituitary function over time, and the hormones that initiate the pregnancy process are produced by your pituitary. It’s impossible to say if or when that would happen, but I’d have my hormones closely monitored, and if I was having trouble getting pregnant for that reason, I could do hormone replacement. She also recommended freezing my eggs, an incredibly expensive and invasive but increasingly popular reproductive safeguard for people mostly in their 30’s.
Shortly after this visit, I had my first MRI since earlier in the year. The images were supposed to show whether the tumor had grown or not, and indicate whether the lanreotide injections had worked or not. And this is where things started to get really dicey. According to the highly-respected, experienced surgeon who works with Dr. K, the tumor had appeared to be growing, albeit slowly. Dr. K had even presented my images at a conference in late November, and that was the consensus. She knew I’d been consulting with Dr. L in Boston, and the two had even compared notes after some prodding by me (newsflash: doctors are very competitive!) Since Dr. K’s surgeon is only consulting these days, she recommended heading back up to Boston to see Dr. L again and get an opinion from the highly-respected, experienced surgeon at her hospital. I’ll call him Dr. B.
Which brings us back to this week.
My mom and I sat across the desk from Dr. B as he pulled up images of the inside of my brain and inspected them. He quickly shared his assessment: “I don’t see any growth.” Come again?
Dr. B couldn’t explain the other surgeon’s rationale for indicating growth, but he said from his perspective, there was no reason to believe the tumor had experienced any meaningful change post-surgery. Therefore, he didn’t think another surgery would successfully retrieve the small cluster of cells remaining in a dark, narrow corner of my head. Instead, he recommended I get another MRI in three months, and based on those results, likely do the radiation treatment.
In my appointment with Dr. L right after, she advised me to believe Dr. B’s assessment and eschew the other surgeon’s. So much of being a patient is being told to put blind faith in doctors, and my eyes have been opened too wide to do that anymore. I wanted to believe the tumor wasn’t actually growing and that I was on a somewhat stable path, but I couldn’t. All I could feel was anger at yet another turn in this thorny path.
There is one more option being considered before radiation — a medication called pasireotide, often used in patients with a different endocrine disorder called Cushing’s Disease. I came across it while doing some independent research on Acromegaly treatments, and found patients with similar profiles to mine had success with it. Much like lanreotide, it’s a monthly injection and it’s unclear how long I’d have to be on it. But when I originally brought it up to both endocrinologists, they conveyed hesitation because studies have shown pasireotide to cause Diabetes. Why would I want to swap one disease for another? So I dropped it.
But at this week’s appointment, pasireotide came up again, and suddenly Dr. L didn’t seem all that concerned about the potential for diabetes. She said it could cause spiked blood sugar, but not actual diabetes where I’d need to take insulin. She even said something about being able to reverse the diabetic side effects? Yet again, I felt simultaneously misled, confused, but a tiny bit hopeful.
For the past six weeks, I’ve been on a weekly dose of pegvisomant (that injection I originally tried daily) and am waiting to see if it’s brought down my IGF-1 levels. If not, we may increase to twice weekly. Still beats every day.
I’m more or less in a holding pattern while I await my MRI in April to see if the tumor is or is not aggressively growing. In the meantime I’m continuing with some lifestyle changes I’ve made in the last few months: exercising regularly, working with a functional medicine doctor on a diet and supplement plan that’s supposed to support my condition, and acupuncture. And now I’m trying to incorporate another change: Being comfortable with the unknown.
Until next time,
M
