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questions about whole brain radiation

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First i want to thank everyone who answered my previous questions about my husband, davids, brain mastesis from lung cancer 1.4 months ago. Then i would like to hear about whole brain radiation side effects and survival. The neurological surgeon told david it is a 3.4x2.5 tumor and solid with some inflamation near it. He suggested 2 weeks wbr and return to see him in october. We have a appt. with a rad onc on thursday. Things are not going fast enough to suit me, after all it is in there and growing!! What are the chances of surviving this, doc said it is pallitive? what does that mean. If there is little likelihood of 6 months or more survival David does not want to go ahead with this. Please send some answers asap.

12 replies

What happened with G/K?
Have you consulted a second opinion and had the scan reviewed by a doc that administers G/K?

G

The initial approach to using radiation postoperatively to treat brain metastases, used to be whole brain radiation, but this was abandoned because of the substantial neurological deficits that resulted, sometimes appearing a considerable time after treatment. Whole brain radiation was routinely administered to patients after craniotomy for excision of a cerebral metastasis in an attempt to destroy any residual cancer cells at the surgical site. However, the deleterious effects of whole brain radiation, such as dementia and other irreversible neurotoxicities, became evident.

This raised the question as to whether elective postoperative whole brain radiation should be administered to patients after excision of a solitary brain metastasis. Current clinical practice, at a number of leading cancer centers, use a more focused radiation field (Radiotherapy) that includes only 2-3cm beyond the periphery of the tumor site. This begins as soon as the surgical incision has healed.

Many metastatic brain lesions are now being treated with stereotactic radiosurgery. In fact, some feel radiosurgery is the treatment of choice for most brain metastases. There are a number of radiation treatments for therapy (Stereotatic, Gamma-Knife, Cyber-Knife, Brachyradiation and IMRT to name a few). These treatments are focal and not diffuse. Unlike surgery, few lesions are inaccessible to radiosurgical treatment because of their location in the brain. Also, their generally small size and relative lack of invasion into adjacent brain tissue make brain metastases ideal candidates for radiosurgery. Multiple lesions may be treated as long as they are small.

The risk of neurotoxicity from whole brain radiation is not insignificant and this approach is not indicated in patients with a solitary brain metastasis. Observation or focal radiation is a better choice in solitary metastasis patients. Whole brain radiation can induce neurological deterioration, dementia or both. Those at increased risk for long-term radiation effects are adults over 50 years of age. However, whole brain radiation therapy has been recognized to cause considerable permanent side effects mainly in patients over 60 years of age. The side effects from whole brain radiation therapy affect up to 90% of patients in this age group. Focal radiation to the local tumor bed has been applied to patients to avoid these complications.

Aggressive treatment like surgical resection and focal radiation to the local tumor bed in patients with limited or no systemic disease can yield long-term survival. In such patients, delayed deleterious side effects of whole brain radiation therapy are particularly tragic. Within 6 months to 2 years patients can develop progressive dementia, ataxia and urinary incontinence, causing severe disability and in some, death. Delayed radiation injuries result in increased tissue pressure from edema, vascular injury leading to infarction, damage to endothelial cells and fibrinoid necrosis of small arteries and arterioles.

Even the studies performed by Patchell, et al, in the early and late 90's have been recognized incorrectly, sometimes, in the radiation oncology profession. The studies were thought to have been the difference between surgical excision of brain tumor alone vs. surgical excision & whole brain radiation. It was a study of whole brain radiation of a brain tumor alone vs. whole brain radiation & surgical excision. The increased success had been the surgery. And they measured "tumor recurrence," not "long-term survival." Patients experiencing any survival could have been dying from radiation necrosis, starting within two years of whole brain radiation treatment and documented as "complications of cancer" not "complications of treatment." There may have been less "tumor recurrence" but not more "long-term survival."

Patchell's studies convincingly showed there was no survival benefit or prolonged independence in patients who received postoperative whole brain radiation therapy. The efficacy of postoperative radiotherapy after complete surgical resection had not been established. It never mentioned the incidence of dementia, alopecia, nausea, fatigue or any other numerous side effects associated with whole brain radiation. The most interesting part of this study were the patients who lived the longest. Patients in the observation group who avoided neurologic deaths had an improvement in survival, justifying the recommendation that whole brain radiation therapy is not indicated following surgical resection of a solitary brain metastasis.

An editorial to Patchell's studies by Drs. Arlan Pinzer Mintz and J. Gregory Cairncross (JAMA 1998;280:1527-1529) described the morbidity associated with whole brain radiation and emphasized the importance of individualized treatment decisions and quality-of-life outcomes. The morbidity associated with whole brain radiation does not indicate whole brain radiation therapy following surgical resection of a solitary brain metastasis. Patients who avoided the neurologic side effects of whole brain radiation had an improvement in survival. There is no survival benefit or prolonged independence in patients who received postoperative whole brain radiation therapy. There may have been some less tumor recurrence but not more long-term survival.

Had fatigue, memory loss and other adverse effects of whole brain radiation been considered, and had quality of life been measured, it might be less clear that whole brain radiation is the right choice for all patients. These patients do not remain functionally independent longer, nor do they live longer than those that have surgery alone, said researchers in a report in an issue of The Journal of the American Medical Association.

The UCLA Metastatic Brain Tumor Program treats metastatic disease focally so as to spare normal brain tissue and function. Focal treatment allows retreatment of local and new recurrences (whole brain radiation is once and done, cannot be used again). UCLA is equipped with X-knife and Novalis to treat tumors of all sizes and shapes. For patients with a large number of small brain metastases (more than 5), they offer whole brain radiotherapy.

As reported in MD Anderson's OncoLog, in the past the only treatment for multiple metastases was whole brain radiation, which on its own had little effect on survival. There are now a variety of effective treatment modalities for people who have fewer than four tumors. Dr. Jeffrey Weinberg at the Department of Neurosurgery at MD Anderson has said "with a small, finite number of tumors, it may be better to treat the individual brain tumors themselves rather than the whole brain." Anderson is equipped with Linac Linear Accelerator. The critical idea is to focally treat all tumors.

The results of a study at the University of Pittsburgh School of Medicine reported that treating four or more brain tumors in a single radiosurgery session resulted in improved survival compared to whole brain radiation therapy alone. Patients underwent Gamma-Knife radiosurgery and the results indicate that treating four or more brain tumors with radiosurgery is safe and effective and translates into a survival benefit for patients.

Sometimes, symptoms of brain damage appear many months or years after radiation therapy, a condition called late-delayed radiation damage (radiation necrosis or radiation encephalopathy). Radiation necrosis may result from the death of tumor cells and associated reaction in surrounding normal brain or may result from the necrosis of normal brain tissue surrounding the previously treated metastatic brain tumor. Such reactions tend to occur more frequently in larger lesions (either primary brain tumors or metastatic tumors). Radiation necrosis has been estimated to occur in 20% to 25% of patients treated for these tumors. Some studies say it can develop in at least 40% of patients irradiated for neoplasms following large volume or whole brain radiation and possibly 3% to 9% of patients irradiated focally for brain tumors that developed clinically detectable focal radiation necrosis. In the production of radiation necrosis, the dose and time over which it is given is important, however, the exact amounts that produce such damage cannot be stated.

Late effects of whole brain radiation can include abnormalities of cognition (thinking ability) as well as abnormalities of hormone production. The hypothalamus is the part of the brain that controls pituitary function. The pituitary makes hormones that control production of sex hormones, thyroid hormone, cortisol. Both the pituitary and the hypothalamus will be irradiated if whole brain radiation occurs. Damage to these structures can cause disturbances of personality, libido, thirst, appetite, sleep and other symptoms as well. Psychiatric symptoms can be a prominent part of the clinical picture presented when radiation necrosis occurs.

Again, whole brain radiation is the most damaging of all types of radiation treatments and causes the most severe side effects in the long run to patients. In the past, patients who were candidates for whole brain radiation were selected because they were thought to have limited survival times of less than 1-2 years and other technology did not exist. Today, many physicians question the use of whole brain radiation in most cases as one-session radiosurgery treatment can be repeated for original tumors or used for additional tumors with little or no side effects from radiation to healthy tissues. Increasingly, major studies and research have shown that the benefits of radiosurgery can be as effective as whole brain radiation without the side effects.

My Husband has small cell lung cancer with one brain Met was 3cm. now about 2cm, he had 10 treatments both directly on the met and comb. whole brain. That was in May he has memory loss and just this past week a seizure a Grand mal this was the first I was so afraid and helpless I didn't know what to do but call 911 and watch him struggle it lasted about 10 minutes and it was over and the doctor put him on seizure meds. He had a MRI and CT scan Friday the nurse called to say that the MRI showed only the one met. but no change in size we have an appointment Monday to discuss the findings and discuss why it happen and was told to continue taking Med {Kepra} The Ct was already scheduled after seizure added the MRI . He has been through to sessions of chemo and 4 more to go. Will be seeing oncologist Tuesday to discuss CT I know that radiation has caused mental problems and He didn't have a choice because the met was shutting down right side of body. I guess you have to take the good with the bad, I see dementia as a result somedays worse than others he hasn't been able to work or chores of anykind since May . I hope you have friends and family to get through all this. I have felt all alone except for the support of this site. I don't know what would be without this community, I wish you and your husband the best. Prayers all around.

GP ALWAYS brings the best info on this site.

His untiring research and work is a wonderful legacy in memory of his dear wife for which all of us should be grateful.

Thank you

You know when I was being pressured to have WBR 8-9 years ago, it was your early work that persuaded me to refuse WBR.

G

Thank you, GP, for your thorough explanation. I had radio-surgery on two brain mets last Oct., but was told that if they come back I might need whole brain radiation. So far, no signs of recurrence, but I've also read enough about wbr that I've pretty much decided to rule it out as an option. I have started to let my doctors and family know my feelings about it. It's difficult when the people you love want you to do everything you can, but I just know I don't want to live with the almost certain side effects. Thank you, as always, for your detailed info on the subject - it will be very helpful to me in being able to discuss this in the future! Pat

Hi,
My Husband, Dan had WBR Aug, 2008. 10 Days of it. We did this because he was having severe seizures and we were told without it he would die within a week. His side effects have not been as severe as some. His short term memory has been effected a little. If he really concentrates, that does not happen. Also, if he is tired, his balance can be a little off. Not bad, but he can feel when he is a little wobbly.
If your Husband is a candidate for something other than WBR, I would suggest you do it. If we would have had the choice we would have done GK or CK.
Dan is also stage IV. Lung tumor in the left lower lobe with mets to the brain at first diagnosis.
He was diagnosed in July 2008 and has been through radiation and several types of chemo. We both agree, the FIGHT is worth it! I still have him and he is the same man I married 21years ago.
I know everyone is different, but there is always a chance for a cure.
Palliative care means to make comfortable and treat symptoms. This is what was first said to my Husband, but now the word used is going for a CURE.
I hope this helps you and your Husband. Please print some of these responses for him. Just knowing there are others out there just like him who are fighting helps!
God Bless,
Kathy

I would get a second and third opinion before I would even consider WBR. As many others have stated, there are other options when there are only a few tumors.

My dad went down hill and suffered more from side effects from the Decadron (steriod given during WBR to reduce swelling) which he could never wean off.

Do not give up without a fight, but do get other opinions before deciding this.

Pam

My wife (47 years old) was diagnosed 1 1/2 ago. She had mets in every organ including her brain. She went through WBR for about a month. She never had any symptoms from her brain mets going into WBR. They said that she may experience problems with her short term memory where she may need to take notes in the future. Fortunately, it has been a year and a half and she has not experienced any effects. The WBR had basically reduced the brain mets to a point where we do not need periodic brain scans. WBR is very tough to go through. She was extremely fatigued and took her nearly a month to recover. The Decadron also kept her up at night. Given where she was, the opinions we received were that she had no choice but to do this WBR.

I am fairly new to this site and I am not familiar with your husband's case. I wanted to say that there is hope out there. My wife was given 2 months to live and it has been a year and a half. I know every case is different but there is a lot of good treatments. I hope you take advantage of some of the new genetic testing they are doing for this decease. There are some drugs out there that are very effective but you need to have to be matched through these tests.

I wanted to thank "GP" for the information he provided. Thanks to everyone out here who posts to this site. It is good to know that we are not alone in battling this disease.

yes, we had the mri reviewed by a radiation oncologist at Siteman cancer center / center for advanced medicine at St. Louis mo. Also reviewed by Neurosurgeon there. Neurosurgreon stated that the size of his tumor is 3.44 cm by length of 2.4. He told us wbr for about 2 weeks and then mid october return to see if it has shrunk enough to do cyber/gamma knife surgery. From what i have read on here i am guessing wbr may be worse then death as far as quality of life goes. If it damages him further, would there even be any ck option in october even if it shrank? Why do you think a more targeted rad treatment , since it is one tumor, was not suggested?

dands

Depending on the number of mets, astute cancer institutions have raised the attainable number of brain mets to treat "focally" from a solitary brain met up to four or five. Focal treatment allows retreatment of local and new recurrences (whole brain radiation is once and done, cannot be used again).

If a cell (good cells included) gets too much heat or is poisoned by a toxic substance or exposed to chemicals that damage its proteins and membraines or radiatlion that breaks its DNA molecules, those cells can just stop functioning.

Traditional external beam whole brain radiation theray is very imprecise in its targeting (both tumor bed area and healthy tissue receive the same dose of radiation from a single beam), resulting in sometimes severe side effects due to the volume of healthy tissue radiated.

Metastatic disease has historically not been treated very well with radiation, due to lack of efficacy and side effects. Observation, with radiation delayed until evidence of progression, or focal radiation (Gamma-Knife, Cyber-Knife) is a better choice in solitary metastasis patients (and even for patients with up to five brain mets).

Primary lesions generally involve "invasion" into adjacent brain tissue and at one time, it made sense to have postoperative whole brain radiation in an attempt to destroy any residual cancer cells. But metastatic lesions have relative "lack of invasion" into adjacent brain tissue, making them ideal for radiosurgery or postoperative "focal" radiation.

In the past, patients who were candidates for whole brain radiation were selected because they were thought to have "limited" survival times of less than 1-2 years (before the effects of radiation necrosis whould show up) and other technology did not exist. Today, many physicians question the use of whole brain radiation in "most" cases as one-session radiosurgery treatment can be repeated for original tumors or used for additional tumors with little or no side effects from radiation to healthy tissues.

There are a number of radiation treatments for therapy (Stereotatic, Gamma-Knife, Cyber-Knife, Brachyradiation and IMRT to name a few). These treatments are focal and not diffuse. Unlike surgery, few lesions are inaccessible to radiosurgical treatment because of their location in the brain. Also, their generally small size and relative lack of invasion into adjacent brain tissue make brain metastases ideal candidates for radiosurgery. Multiple lesions may be treated as long as they are small.

First, know that radiaton is the only way to treat brain mets. I think I would save the WBR as a last resort. Go with the focal. When you see the Rad/Onc ask about this versus WBR and tell them you would rather try a focal first. You need to arm yourself with lots of info and be prepared. GP has just given you great info. Have they talked about surgery at all? Do you know the location? Good luck and take care, JC

Ask if there are other indications that support WBR over any other approach. It's possible that the Radiologist is seeing a more generalized swelling or other signs that might indicate the spinal fluid is infected and causing the transport of mets. In that setting the treatment may make better sense.

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