Sunday, June 26, 2011

Shhhhh! It's Brain Cancer! (Part One)

The day before Dad had the surgery to confirm the diagnosis and “debulk” the brain tumor, he had a full body scan to rule out the possibility that cancer had originated in another part of his body and then spread to his brain.

When we were told that the scan was clear (meaning he didn’t have cancer except in his brain), we were so happy. The neurosurgeon must have thought we were so naïve … and thankfully, at the time, we were: a few days after the surgery, we met with the oncologist and learned that cancer that originates in the brain, which is called “primary brain cancer”, is much more deadly than cancer that has metastasized.

It seemed the more we learned about Dad’s condition, the worse the news was.

The definitive diagnosis of glioblastoma multiforma (GBM), the most aggressive type of primary brain cancer, didn’t knock me to my knees at that point, though; I remained firmly seated in the lap of Denial, sipping on a frozen cocktail of Bargaining and snacking on a side dish of Hope.

How many celebrities can you name who have had brain cancer?

How many can you name who have had breast cancer or another kind?

OK, that’s not entirely fair because brain cancer is relatively rare, but the point is that it’s in a league of its own as compared to other cancers. Brain cancer is like a hybrid of Cancer and a neurological problem like a traumatic brain injury or a stroke. The difference between brain cancer, particularly the most aggressive type which is what my dad had, and the latter is that it’s progressive, and it’s fatal. A person with glioblastoma multiforma (GBM) is not likely to get much better and not at all likely to walk away from it or to survive it long-term.

In our experience, GBM is so different from other types of cancers in that it so often strips the person not only of the ability to fully grasp the implications of their diagnosis but also of the ability to fully participate in treatment and end-of-life decisions.

Here's what we were told in the first week after Dad was diagnosed with brain cancer:

*The type of cancer he had is a Stage IV brain cancer called Glioblastoma Multiforma (GBM).

*It's relatively rare; there are about 12,000 new cases diagnosed in the U.S. each year, which translates to only about 1% of new cases of cancer diagnosed annually in our country.

*It's tricky: GBM is generally found in the cerebral hemispheres of the brain and is capable of very rapid growth. The location is particularly catastrophic because it frequently affects motor skills, cognition, and things that affect personality traits like mood and memory. The location and the shape of the tumor also affect the ability of the surgeon to "get it all" - in fact, most of the time, neurosurgeons end up saying it's too risky to try to remove 100% of the tumor during surgery, which leaves little "seeds" of tumor behind, which can double in size in as little as THREE WEEKS. GBM is “fed” by many blood vessels which multiply rapidly. Cells in this type of cancer change, or mutate, quickly, which adds to the challenge of treating it.

*Less than 10% of newly diagnosed GBM patients survive even five years.

*Treatment depends on where the tumor is located, the type of tumor, a person’s age, and general health of the patient. Unlike many other types of tumors, there is no "cut and dried" treatment option for GBM. Given the "standard" (most researched and recommended) of care for this type of cancer, a pill-form of chemo and radiation, a patient has less than a 5% chance of surviving up to two years.

We didn’t tell Dad that the mass in his head was suspected to be malignant before the surgery because we didn’t believe that it was. We saw Dad as exceptional, and we had proof: he was often mistaken as being at least 10 years younger than he was, he could (and did, on a regular basis) physically out-perform most people half his age, he was in great shape, and he had beaten the odds many times before when he had had other potential medical crises. Personally, until a couple of weeks before Dad died, I was convinced that he would not only survive this terrible disease but that he would beat it hands-down.

It is very difficult to break the news or even to witness the news being broken to an adult who has a life-threatening condition. We had to do this at the same time we struggled with the cold-hard reality of the situation ourselves, and we had to do it repeatedly. Dad initially took the news that he had brain cancer in a way that was so admirable and impressive but that was not surprising to anyone who really knew him: I had always known him to face adversity head-on, and that’s just what he did when he was informed of his diagnosis.

However, though, because of the problems with short-term memory and reasoning that the remaining tumor was causing, Dad forgot part or all of the information pretty often. Looking back, I see now that he likely was drafted into joining Team Denial as well, which also hindered his ability to adequately process the diagnosis. Useful, I suppose, in that it allowed Dad and the rest of us to put one foot in front of the other, but also troublesome because we had to explain what was going on to Dad over and over. And that seemed so much worse than a single session of news-breaking.

Even when Dad couldn’t fully deny the whole “Big C” diagnosis, he didn’t really “get it,” either; for example, once when we were in a waiting room full of people at the oncologist’s office, he said loudly, “I’m just glad I don’t have REAL cancer like some of these people in here!”  He regularly talked about when he could go back to his job as a commodities broker, when he could drive again, and when he would be able to get back into "Ironman-shape," even as he had trouble with basic living skills.  (I'm not sure if Denial is a team or a contagious condition, but, either way, we all had it going on BIG TIME, and Dad was no exception.)

So the Secrecy of Brain Cancer starts as soon as the hint of the diagnosis first comes out. Is it better to tell the patient right away what the diagnosis is likely to be? Is it better to let the doctor tell him? Is it better to wait and make SURE the doctors know what they are talking about, since many doctors see less than one GBM patient per year? When you do tell the patient what the diagnosis is, is it better to tell him the prognosis? Is it better to let him ask what it is and if/when he does, do you tell him the whole truth and nothing but the truth? Is it better to explain (and re-explain, when he forgets or doesn't understand) all of the treatment options, even though you don't he doesn't understand the diagnosis or the prognosis, or is it better to just decide for him? Is it better to give him options, and, if so , how many and which ones? Or is it better to just tell him you know he wants to fight like hell and then push forward because you are convinced that's what he would decide if he could? How much hope do you give him - is it better to tell him you're sure that he will get to go back to work, to go back to doing the things he loves, TO LIVE?

We didn't know the answers and we still don't. The only things we knew for sure at the time were these: NONE of our options were good, and we were in this together.

To be continued ... 
                                                     CLICK HERE TO GO TO PART 2


  1. Sometimes there are no answers as what to do or not. Your family held close together and you were with your Dad, giving your total love and support. Sometimes I think people forget things and loose their memory as mother natures way of protecting them from something too harsh to take. I thank God for the meds like morphine which I have learned separates your brain from the anxiety and pain. He is at peace now. Take one step at a time and do things at your pace. I'm proud you for facing your mourning in such a productive way. Peace, Diane

  2. I just discovered your blog today after looking through a lot of websites looking for support on grieving the death of a father, and I came across your blog. My dad and grandfather died from GBM, both not making it to a year past diagnosis. The secrecy of this cancer is so frustrating because it is rare yet so aggressive that it deserves some attention. Thank you for sharing your story because reading it has been so helpful for me as our experiences seem to be very similar. I will be reading through your story in the near future.