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Why Do Patients Stop Treatment for Glioblastoma Multiforme?

When you hear that someone has received a devastating brain tumor diagnosis, glioblastoma multiforme is often the culprit. The outlook for individuals diagnosed with this tumor is poor, regardless of their age or previous health status, because there is no known cure for the disease. Patients with the tumor often come to a point where they must decide whether they want to pursue further treatment or simply receive comfort care.

As Michael B. Sisti, M.D., Columbia neurosurgeon, explains. “It’s really important to be a great doctor, but the whole ability to manage this on a humanistic level is more important than the surgery, chemotherapy or radiation, because those are treatments, not cures. The sensitivity of how the medical team handles this situation with the patient and family when they get to this point is what [allows them] to accept this horrible outcome and to heal.”

The decision to discontinue tumor treatment is not an in-the-moment one, but something that has been discussed and considered by most patients, their families and medical teams since the initial diagnosis. Glioblastoma multiforme (GBM) is generally treated with surgery to remove as much of the tumor as possible. The difficulty with surgery lies in the fact that, as the tumor grows, it extends finger-like projections that embed themselves into healthy brain tissue. A neurosurgeon must remove as much of the tumor as possible, while leaving the healthy brain intact. It isn’t easy to identify where tumor ends and healthy brain begins. Neurosurgeons have developed techniques to help with this distinction, but even small bits of tumor left behind will relentlessly grow and invade their surroundings.

This is where radiation and/or chemotherapy come into the picture. These treatments are used to try to limit the growth of any tumor that remains after surgery. They are proven to usually slow the progression of the disease, but over time glioblastoma tumor growth almost always outpaces these treatments, at which time the remaining available treatments are primarily experimental.

When many individuals elect to discontinue treatment at some point along the way, it’s because either the tumor continues to progress in spite of treatment, or the side effects overshadow the uncertain benefits of experimental treatment. These individuals will then opt for comfort care—medical treatments and therapies that help with symptoms but don’t address the tumor itself. This helps them enjoy the best possible quality of life during their final days with loved ones.

For those who aren’t closely involved with the patient and how their disease has progressed, this may seem like a sudden decision. Dr. Jeffrey Bruce, M.D., Columbia neurosurgeon and Director of the Bartoli Brain Tumor Research Laboratory, explains,

“Normally, when someone is diagnosed with GBM, they have surgery, and then radiation, and then temodar chemotherapy, because those are treatments that have been proven to have an effect against these types of tumors… If they’ve completed those treatments that are known to work and the tumor grows back, the next treatments to try are experimental… Normally people continue with an experimental treatment until it’s clear that it’s not working, and then they go onto another experimental treatment. But at some point, all the effects of all the treatment the patient has had just become too much and the patient decides they don’t want to go through any more treatments, mainly because they’ve completed all the treatments they think were going to work and reached a point where the side effects are too much and not worth it.

“Don’t forget, these are experimental treatments that have not been proven to work, so when you decide you’re not going to continue to pursue treatment, it’s not that you’re giving up on known treatment. You’re saying, ‘I don’t want to deal with the side effects that come with a treatment that’s not even guaranteed to work.’ ”

And as Dr. Sisti explains,

“Part of the obligation of a good surgeon, from my perspective, is from the very beginning to try and establish a rapport with the family about the situation the patient is in and what the expectations are, so that months to years down the line, if things are going badly for the patient, it doesn’t come as a surprise to them—they’ve had a chance in their own way to assess what it is they want done for them.

“Generally the patients themselves know when doing more is the wrong thing. The surprising thing, from my point of view, is that patients from all walks of life who have to face this type of tragedy usually come to it with a fair degree of human dignity and compassion that always seems to make sense in the worst possible situation to everybody involved. I think that’s how people heal. The patients realize the doctors have done everything, the patient has done everything, the family has done everything. When it becomes abundantly clear that we aren’t making any progress, everybody who was affected by the tragedy can at least accept that the effort was made to put the tumor in remission and maintain quality and dignity of life for as long as possible.

“With my patients, it never ceases to amaze me how the patient him or herself always is the person who stands up and makes the decision and says ‘I’ve finally reached that point where we don’t need to do more.’ They are very concerned about their family. It’s bad enough these patients have these tumors, but in some way patients set the tone for the rest of the family so they can survive, so they can go on. They’re heroic in how they fight it. All my patients are heroic.”

This heroism is a call to action for Dr. Bruce. His desire to change the inevitable outcome of GBM fuels his research. As Dr. Bruce explains, patients with GBM have more opportunities for experimental treatments than ever before. Immunotherapy is a growing area that includes the use of vaccines against brain tumors. Precision medicine is another area of active research where individual tumors are analyzed for genetic markers so that treatments can be specifically tailored to target them. These are all areas of research Dr. Bruce and his colleagues are pursuing.

Another important area of research led by Dr. Bruce involves the development of methods to deliver drugs directly into the tumor. “It’s a way of bypassing all of the systemic toxicity, all of the side effects that you get with chemotherapy, by giving the drug directly into the tumor rather than having it travel through the bloodstream to get to the brain.” Dr. Bruce and his team recently launched the first clinical trial ever in which the drug is given directly into the tumor through an implantable pump in the patient’s abdomen.

“Columbia is doing all of those research trials,” says Dr. Bruce. “Trials with immunotherapy, trials with precision medicine, and the local delivery, as well.” And he says we’re moving toward combining these research ideas. “Right now, they are being combined in the pre-clinical studies, in the laboratories, but not yet in clinical trials. There are plans for that based on some very promising work we’re doing in the lab right now.

“The research is always moving on,” says Dr. Bruce. “There are probably more opportunities now for experimental activities then there have ever been at any given time.”

You can learn more about ongoing research to stop GBM at the Columbia Neurosurgery Brain Tumor Center.

You can learn more about radiation therapy at the Columbia Neurosurgery Gamma Knife Center.

Learn more about Dr. Bruce at his bio page here.

Learn more about Dr. Sisti at his bio page here.

patient journey

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