This really is only written for two people, but I don't know how else to ensure they both see it. I had invited NC to contact me, but he didn't and later I noticed Smokey also has a brain tumor. One of my (step) daughters went through this treatment a few years ago, and I thought it might be helpful to know what to expect, particularly when it comes to deciding on the sort of questions you might want to ask your own doctors. My experience may not be typical but I found the doctors to be almost reluctant to talk in layman's terms and the process turned out to be nothing like we we led to believe (or wanted to believe) it would be like.
Initially the patient is diagnosed as having a brain tumor and at this point, that is all the doctor knows for certain. The seriousness of the situation depends on a number of things:
Usually, after a tumor has been identified, the patient will meet in a matter of days with the team that - at this point - is going to be responsible for further treatment. Initially such treatment will almost always begin with "traditional" surgery to remove as much of the tumor as possible, although gamma knife surgery is sometimes a preferred option.
Depending on whether or not any of the patient's normal functions are already being affected, that operation may be scheduled for any time within the next 3 months or so. The doctors may give an estimate as to the operation's chance of success, but they are giving you that based on statistics. The success of your operation depends upon:
If there is even a slight possibility that any of the tumor was left behind, after 3-6 months (this depends on the extent of the initial operation and the healing time involved) the patient will be offered radiation and/or chemotherapy. Usually, because the effects on young children can be more severe, radiation therapy is avoided.
At this stage the doctors have post-op scans of anything which remained of the original tumor. Over the coming months (and periodically even after the patient gets an all clear) the patient will be re-scanned for signs that the tumor is growing. That is what will determine what further treatment is given and how often (if at all) it needs to be repeated.
If a lot of the tumor was left behind and it does show signs of rapid growth, benign or malignant, gamma knife surgery or even further traditional surgery, are possibilities.
---
Because of the treatments which are available, brain tumors in general should be feared much less than our emotive reaction to the words suggest. But apart from the potential seriousness in some cases, I wouldn't wish this condition on anyone.
A tumor is easy to see on the scans: your doctor may well show it to you. But until the operation itself they cannot be totally sure what they are dealing with. And even afterwards when they know exactly how much they were able to remove, they cannot know how anything left behind is going to behave.
So one of the worst aspects of this condition is the uncertainty you may have to endure for anything up to 2+ years unless every step produces the best result possible. That is something we discovered later, is very common in brain tumor cases, but at odds with the fairly optimistic messages the doctors tended to deliver.
What can also be crippling, is the cost. In the US that can run to around a half million dollars if the case isn't straightforward. The patient (and if a child, one or more parents) will be going in for treatment or tests at regular intervals. Most of these are in and out on the same day. Some can last for two days. The operation itself could involve 5-10 days of hospital time, start to finish.
For children in particular, they are sources of financial help. St Judes research hospital in Georgia is a wonderful hospital who work totally for free. But there are also research hospitals which will take adult patients. One key however, is to go this route before you have any treatment at all. It is fine to have the original consult and discover how urgent your case is considered to be. But while you are waiting for the first treatment is the time to think about your finances and whether you may need assisted treatment. It is much harder to be accepted into a research program after your treatment has begun.
I learned that when pressed, particularly early on when they are largely guessing what they will find later, doctors may play down what the patient is facing. My best advice would be to stay hopeful, but not allow yourself to become convinced that everything is going to be fixed at once. Do that and even routine treatment leading to a good outcome is likely to push you into depression. Be optimistic of course, but also try to be realistic about how long it can be (probably at least a year, even if things go well) before you are likely to know for certain that all is likely to be well.
Useful links:
http://www.usnews.com/usnews/health/...ls/tophosp.htm
http://www.stjude.org/brain-tumors/0..._18782,00.html
http://www.cancer.gov/cancertopics/f...ial-assistance
Initially the patient is diagnosed as having a brain tumor and at this point, that is all the doctor knows for certain. The seriousness of the situation depends on a number of things:
- Is the tumor malignant? They can only know that it definitely is malignant (ie spreading) if the scan/x-ray shows an artifact with tendrils extending from the surface. If the exterior of the tumor is smooth, there is an excellent chance it is benign.
- However, while malignant tumors are usually the most potentially dangerous, the present size and above all the location of benign tumors can make them dangerous too. Obviously in and around the brain are many nerve paths and a tumor can press on these nerves, effectively rendering them useless, as it grows.
Usually, after a tumor has been identified, the patient will meet in a matter of days with the team that - at this point - is going to be responsible for further treatment. Initially such treatment will almost always begin with "traditional" surgery to remove as much of the tumor as possible, although gamma knife surgery is sometimes a preferred option.
Depending on whether or not any of the patient's normal functions are already being affected, that operation may be scheduled for any time within the next 3 months or so. The doctors may give an estimate as to the operation's chance of success, but they are giving you that based on statistics. The success of your operation depends upon:
- Whether the tumor is malignant or benign, because it is much harder to remove all traces of a tumor which has already begun to spread.
- The location of the tumor, because if it is close to, possibly even wrapped around, critical nerves, in most circumstances they will not risk damaging those nerves and - in effect - doing the same damage the tumor itself would have done. From experience, doctors can guess, but until the operation itself is under way, not know for sure exactly what they will find in this context.
If there is even a slight possibility that any of the tumor was left behind, after 3-6 months (this depends on the extent of the initial operation and the healing time involved) the patient will be offered radiation and/or chemotherapy. Usually, because the effects on young children can be more severe, radiation therapy is avoided.
At this stage the doctors have post-op scans of anything which remained of the original tumor. Over the coming months (and periodically even after the patient gets an all clear) the patient will be re-scanned for signs that the tumor is growing. That is what will determine what further treatment is given and how often (if at all) it needs to be repeated.
If a lot of the tumor was left behind and it does show signs of rapid growth, benign or malignant, gamma knife surgery or even further traditional surgery, are possibilities.
---
Because of the treatments which are available, brain tumors in general should be feared much less than our emotive reaction to the words suggest. But apart from the potential seriousness in some cases, I wouldn't wish this condition on anyone.
A tumor is easy to see on the scans: your doctor may well show it to you. But until the operation itself they cannot be totally sure what they are dealing with. And even afterwards when they know exactly how much they were able to remove, they cannot know how anything left behind is going to behave.
So one of the worst aspects of this condition is the uncertainty you may have to endure for anything up to 2+ years unless every step produces the best result possible. That is something we discovered later, is very common in brain tumor cases, but at odds with the fairly optimistic messages the doctors tended to deliver.
What can also be crippling, is the cost. In the US that can run to around a half million dollars if the case isn't straightforward. The patient (and if a child, one or more parents) will be going in for treatment or tests at regular intervals. Most of these are in and out on the same day. Some can last for two days. The operation itself could involve 5-10 days of hospital time, start to finish.
For children in particular, they are sources of financial help. St Judes research hospital in Georgia is a wonderful hospital who work totally for free. But there are also research hospitals which will take adult patients. One key however, is to go this route before you have any treatment at all. It is fine to have the original consult and discover how urgent your case is considered to be. But while you are waiting for the first treatment is the time to think about your finances and whether you may need assisted treatment. It is much harder to be accepted into a research program after your treatment has begun.
I learned that when pressed, particularly early on when they are largely guessing what they will find later, doctors may play down what the patient is facing. My best advice would be to stay hopeful, but not allow yourself to become convinced that everything is going to be fixed at once. Do that and even routine treatment leading to a good outcome is likely to push you into depression. Be optimistic of course, but also try to be realistic about how long it can be (probably at least a year, even if things go well) before you are likely to know for certain that all is likely to be well.
Useful links:
http://www.usnews.com/usnews/health/...ls/tophosp.htm
http://www.stjude.org/brain-tumors/0..._18782,00.html
http://www.cancer.gov/cancertopics/f...ial-assistance
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