Mass in Brain - Revisited

If you read these posts because I am funny, the following is not one little bit funny. I am not even going to attempt to be funny because I am feeling unfunny at the moment and will not apologize for it (dammit!).

I saw a second neurosurgeon last Friday at the UMD Gamma Knife Center for a second opinion on brain mass (we cancelled Harvard and UPitt after Hopkins consult). So this UMD surgeon thinks the mass in my brain may be a "very slow-growing" tumor. In his opinion, there is absolutely no way to tell what type of tissue the mass is without a highly invasive biopsy, but he cannot recommend a biopsy at this point, or any type of surgery, because of the deeply entrenched location of the mass inside the ventricle. Basically the mass cannot be accessed for biopsy because a needle cannot get to the center of brain.

In fact, my particular mass is quasi-inoperable. There have been about 100 surgeries TOTAL (not only at University of MD, but at all medical centers in the U.S.) to remove masses from this specific location; many with "high mortality and morbidity." This thing is in the dead (pun not intended) center of my brain, next to all sorts of very important brain stuff and to hack away at it, a surgeon would have to root through the entire "good" brain to access "bad" blob, which intuitively, does not require a medical license to recognize that it would cause a lot of messed-up stuff along the way. In his words, surgery to get to this mass would pose an "extremely high risk of death and severe disability." Wonderful.

Usually when there is a brain mass, treatment is to remove it immediately and "type it" for pathology, but not in this case. Right now, the recommendation is "watchful waiting [code for scans and prayers]." Oh - and a lumber puncture - which I am SUPER excited about, because I love needles. Given that I am a such a patient and low-stress sort of person, this is perfect news - just sit around, calmly, not worrying about it, hoping I do not go blind or develop seizures.

Course of action: UMD surgeon recommended MRIs (with contrast and IVs - more needles!) every few months for the rest of my life (!) to see how the mass changes ... may stay the same, but may not. If it stays the same, it will be fine. If it changes, then I am screwed. As previously stated, there is very little "wiggle" room inside the brain's ventricles for foreign objects to grow. Plainly speaking, even a "benign, congential" mass can be considered "malignant" in the ventricles because of the high degree of damage even a tiny mass can cause. There is no way to know at this point as there is not much precedent on how such masses behave. The location of this mass is "exceedingly rare" and occurs in @ one in two MILLION people.

I was informed: "to add to [my] neuroses - [the surgeon has] patients who have had masses that did not change for twenty years and then all of a sudden started to grow and needed to come out - brain tissue can be weird and unpredictable." He concluded, "I wish I could tell you not to worry about this and go get a life - but I can't - see you in a few months."

I have been trying to process. It may be fine, it may not be. Lots of scary questions, not many answers. Stupid, stupid brain.

Neurosurgeon Appointment

My head is so full right now; I don't even know where to start. And, yes, it is 3 in the morning. I am too keyed up to sleep right now - in an awesome way.

Because I told many people that I would post the outcome of my appointment with the neurosurgeon today, I will cut right to the chase: the neurosurgeon (head of Hopkins - so he is probably not a very smart guy) does NOT think I have a brain tumor. I do have a mass in my brain, but his opinion is that it is simply a congenital deformity. Basically, I have an "abnormal" mass of extra tissue in my left ventricle, which reads like a tumor on MRI but is not tumor tissue, just "extra" brain. I think the clinical implication is that my brain has the equivalent of a third nipple. The mass is certainly strange and rare, but is not life-threatening or dangerous, if it never changes. I will be followed with periodic scans going forward just to make sure it is not growing or changing over the course of the next five-seven years, but the neurosurgeon is pretty confident it will remain static.

I feel like I just received a stay of execution. Two and a half weeks ago, my doctor called and said "You have a brain tumor." Not - I THINK or MAYBE or MORE TESTS TO CONFIRM, but "you HAVE." I had to repeat those exact words three times because it was such a surreal moment:

"You are diagnosing me with a brain tumor?"

"Yes."

"OK, to clarify - your diagnosis is ..... brain tumor? Really? Brain tumor!?"

The second I hung up the phone, I started researching immediately. I am a manic researcher - whether I am buying a vacuum cleaner or possibly getting my brain cut into - I want to know EVERYTHING about the pros, cons, insider tips, etc. While some of the medical journals were certainly over my head, the gist of what I could extrapolate was that almost any sort of brain tumor is bad and you die. Some types of tumor hasten death more quickly than others. My heart nearly stopped when I read that the average five-year survival rate was @ 30% for ALL brain tumors - regardless of whether the tumor is benign, malignant, treated, or untreated. Not great odds.

I had just gotten my head wrapped around this idea when we met with my doctor the day before Thanksgiving. She informed me that she and her colleagues had reviewed my films and had narrowed down the classification of tumor to three possible types: mengianoma (ok - can be dealt with - would be best kind to have out of the three, but they did not really think it was this one b/c of location), neurocytoma (also - not super-awful - exceedingly rare, so may be unlikely), and .... drumroll, please ... astrocytoma. I now know that "astrocytoma" is one the scariest words in the English language.

This sort of information kept me up at nights:

(Medscape) Astrocytoma: Malignant astrocytoma represents one of the most devastating tumors affecting children and adults. Surgery and adjuvant conventional radio- and chemotherapy have had minimal effect on changing the poor prognosis, which remains at a median range of only 9 to 12 months.

I was told that the neurosurgeon would review my new scans and make the call on what type of tumor I had, and what to do about it. First line treatment is most often surgery - to biopsy, get a tissue sample and remove as much as possible. For obvious reasons, brain surgery is not without risks. To add to the stakes, the Hopkins neurologist told me that there were only about 20 people in the country that are "acceptable" at removing intraventricular tumors because it is such a difficult area of the brain to access surgically.

As I began mentally preparing myself for my appointment, I played through the scenarios in my head: Worst case: Inoperable, astrocytoma, prognosis of months? Better case: Can remove through surgery, is benign, surgery not as risky as had been told, may have a few years ... maybe more? Best case: Think all can be removed, will have full recovery! Either way - I was bracing myself for the "surgery on your brain" news and all the inherent risks.

I did not tell Jeff or my family this at the time because it seemed over-the-top morbid, but I recently spent the better part of a day checking into options for hospice coverage. I got a packet of info from one of the brain tumor non-profits and was going through the checklist of things to do while dealing with a brain tumor diagnosis. Step Ten: Line up hospice care, now, before surgery, while you are healthy and have the strength. Wow. There are no words to express how chilling it is to call to inquire about your own hospice care when you are 32 years old.

So - the diagnosis of "line up hospice care" to "you have a brain nubbin" is a a pretty big discrepancy. When we had my appointment yesterday, we had already sent my scans and records to Mass General/Harvard and Pittsburgh (kind of random - but one of best intraventricular surgical guys is there) for second and third opinions. I am assuming all will we well with that. I debated calling those off but 1) it is my brain and 2) well, it is my brain. Want to be 110% sure ... maybe 120%.

I still have weird symptoms, which the neurosurgeon thinks may be a pseudotumor. Not super scary like the word would implicate - simply means elevated pressure in the CNS. Not a huge deal. He wanted me to have the lumbar puncture done to look for that and some infectious agents - will schedule that for post-Christmas/New Years. I think I have vastly exceeded my quota of medical drama for 2007 already.

So, my original post was correct - I have an imperfect brain. However, it is not an imperfect, lethal brain, and for that I am very, very happy.

At the risk of this sounding like an Oscar speech: Thank you, a thousand times over, to all my friends and family who read my notes, sent me wonderful mail and presents, called me over and over (even when I was not returning phone calls), and prayed for me or kept me in your thoughts. I can honestly say that I would not have dealt with this terrifying time so well had I not had your support and love.

Love, J

PS I ROCKED those lucky pants at my appointment .... in case you were wondering.

Dr. God's Hands

I am waiting for the assistant to Dr. "God's Hands" (Ben Carson at Hopkins, per his self-titled book) to call me back. He was the first neurosurgeon that both the Hopkins and the UMD neurologists referred me too. I was told he does mainly pediatrics but will consult on a few adult cases per year.

When I called the Hopkins neurologist to report I was having problems getting in to see Dr. God's Hands, he replied "I will call and tell him that your diagnosis is an intraventricular brain tumor, that would excite him!"

Ummm - no. No exciting the world-class neurosurgeon. I want my brain to be as boring as can be. Boring. Textbook and boring. Not exciting.

Exciting means "dead" and then later written up in a medical journal about why my "case" was so exciting that I am now dead. I want to avoid that.

Dead people do not get to shop for shoes.