Chondrosarcoma patient: When there isn’t anything else the doctors can do

Chondrosarcoma patient: When there isn’t anything else the doctors can do

via Cancerwise | Cancer blog from MD Anderson Cancer Center:

Michael_Snyder12.10.jpgBy Mike Snyder

“At this point, there isn’t anything else we can do for
you.”

That sentence is one that cancer patients never want to hear their
doctor say. It implies a finality, an ending, a loss of hope and a
fear-come-true that we never want to face. The fear of hearing those words is something many cancer patients live
with every day.

So what do you do when it’s your doctor saying something like this
to you? How do you react? What do you say, if anything? In my case, I initially
said nothing. What my doctor said didn’t register with me. Did he just say I
was dying?

“Mike, do you understand what I just said?” my original
oncologist in Albuquerque asked.

For a moment, I just stared at him. Then I asked, “Would you
repeat that, please?”

“Your tumors are growing faster than I can remove them. More
surgery isn’t an option and there isn’t anything else out there for chondrosarcoma
that I know about. I’d like you to consider hospice
care
since the tumors will probably kill you within five to 10 years if
they keep growing at the same rate they are now.”

At the time, I was 54 years old. And my doctor just told me I was
going to die, perhaps sooner rather than later. That wasn’t fair or right. I
wasn’t ready to die. There were still
things I wanted to do with my family.

My doctor and I talked for a few more minutes. He closed by saying
the one thing that did register and made sense: “If you want to get a second
opinion, you won’t offend me. I’d actually encourage it.”

Seeking a second opinion for
chondrosarcoma at MD Anderson

His advice about a second opinion led me to MD Anderson, and
ultimately, to participate in a series of clinical
trials
. As I was signing up for the first trial, one of my questions was
what would happen if we ran out of treatment options.

“If it comes to that, we’ll be honest with you about
it,” my doctor said. “But even when one clinical trial ends, we
usually have more coming down the pipe. Sometimes you might have to wait a
month or so.”

Those words were soon lost in a jumble of new terms and procedures
associated with the clinical trial I ended up on. But, just like my doctor had
predicted, when one trial was winding down, another one was getting started. Since
I began coming to MD Anderson in 2011, I had never been off treatment for more than
six weeks.

Exhausting
all effective treatment options

Things changed last October.
My trial drug was slowing the growth of my tumors, but it was no longer
stopping them. The tumor growth rate increased so much that I had to drop out
of the clinical trial. The drug wasn’t helping me anymore.

My care team began the process of moving me to a different trial,
but we kept running into roadblocks. One study that had been open suddenly
closed. Another study changed protocol and was no longer open to patients with
my type of cancer. A third study that was listed as open was actually close to
being cancelled.

Then the call came from my doctor with the news I thought I’d never
hear again. There wasn’t a clinical trial or treatment offered by MD Anderson that
could help me. Later that day, when I looked online at my personal health
record, the confirmation of what he said seemed to leap off the page at me: “The
patient has exhausted all effective treatment options.”

That sentence hit me as clinical and final. No more options. No
more choices. My cancer treatment was over. It was hard to read the sentence
and not start crying. Honestly, when I
read it again later in the day, I did start crying. I thought about everything I’d been through and had put
my family through, only to have the best cancer hospital in the world tell me
they couldn’t help me anymore.

Just like before, once the initial shock wore off, I knew I
couldn’t accept a prognosis that left me with no options and no hope. I knew
there had to be something else out there.
So I’ve started looking at other treatment options, and I’m still
waiting for a new trial.

I have to emphasize that this is the approach I chose. It’s the
method that worked for me. For other cancer patients, the circumstances and the
choices may be dramatically different. Had I been enduring a wide array of
nasty side-effects or facing serious quality of life issues, I likely would
have made a different decision about my treatment.

Advice
for other cancer patients

Whatever decision you make at this point has to consider your
circumstances, your comfort level and your quality of life. The course of
treatment has been your choice. What to
do next when the treatment ends is your choice as well.

You will want to talk with family, friends, and your health care
team. Talk with clergy
and counselors as well. For some discussions, you’ll want your family
involved. At other times, you may want
to limit the talk to just yourself and your spouse or caregiver.

Make use of MD
Anderson’s counseling services
. By doing so, you’ll know that your decision
is based on solid information, while taking your thoughts and feelings about
your treatment into account. This decision isn’t easy, but the process of
making it can be easier if you take advantage of the help that’s available to
MD Anderson patients. I encourage you to do so, for yourself and for those on
the journey with you.

Mike Snyder’s cancer journey began with a sore left knee in
the mid-1990s. After a variety of tests and minor surgery to correct the
problem, he was diagnosed with a type of bone cancer called chondrosarcoma. In spring 2011, his doctor
recommended that he switch to a hospice-type care because his tumors were
growing too fast. This was an answer he refused to accept.

Read more blog posts by Mike Snyder

For more info: Chondrosarcoma patient: When there isn’t anything else the doctors can do

Cancerwise | Cancer blog from MD Anderson Cancer Center

Chondrosarcoma patient: When there isn’t anything else the doctors can do

Share this post:

Related Posts

Leave a Comment