CSN Login
Members Online: 13

Advice on Whole Brain Radiation

ladybug626's picture
ladybug626
Posts: 32
Joined: Dec 2003

A close family friend was diagnosed with non small cell lung cancer with metastasis to the brain 01/04. She is finishing her last chemo and will begin whole brain radiation 5 days a week for several weeks followed by the gamma knife. I have heard controversy over wbr. Does anyone have advice or opinions about treatment? I appreciate your input.

michaelcie
Posts: 133
Joined: Nov 2001

hi Jashe, I would seek a second opinion , if there is time for that. It would make you and your friend know that you had chose the best treatment available and help to put you at ease. God bless and in my prayers, Mike

michaelcie
Posts: 133
Joined: Nov 2001

hi Jashe, I would seek a second opinion , if there is time for that. It would make you and your friend know that you had chose the best treatment available and help to put you at ease. God bless and in my prayers, Mike

bobmc's picture
bobmc
Posts: 49
Joined: Nov 2002

Hi Jashe;
I just finished 20 treatments WBR and am waiting for the results. Follow-up MRI's will be scheduled in a few weeks. I was Dxed with NSCLC and had my left lung removed on 5/2/01 and a follow-up CT scan right before the Holidays picked up two mets to the brain. This is not uncommon for lung cancer. The WBR is a preventative measure and is usually done first and from what I was told has a 50/50 chance of killing the tumors.It is a realitively easy and quick procedure. Treatment takes about 15 min.and side effects are cummulative and can be a bit unpleasent. If it does not work then I will also be doing sterotactic radiosurgery ( gamma Knife); I also got 3 opinions before starting this. I'll be happy to share details with you if you like, you can PM me here on ACS. I will be on vac. for the next week though, need to get away, side effects of radiation were not to kind to me! Hope this helps
God bless and be well
Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01
MRI -12/18/03 -brain mets found -WBR comp. 2/11/04
absolutely insist on enjoying life today!

nicholesmom
Posts: 17
Joined: Jan 2004

Hi bobmc:

My Mother has small cell lung cancer. She was receiving chemo and radiation at the same time, became to weak and was told that the treatments had to stop. However, when they did the cat scan they found out at the cancer was gone. They then did brain radiation as a precautionary measure. Since then, she cannot walk without assistance, she is weak and tired but mainly she is very slow mentally. Did you have this side effect.

My father says that the Doctors say this is common and will get better. I cannot imagine how. It seems to me that my Mother is giving up, my Father doesn't really allow her to move anyplace by herself, now she cannot. She has become weak and afraid of everything, this is not my Mother and wasn't my Mother during her entire treatment. I don't know what to make of this please let me know if you had any of these side effects or if it sounds to you like she is depressed.

Thank you for your help!!

ladybug626's picture
ladybug626
Posts: 32
Joined: Dec 2003

Hi Nicole's Mom:

I am sorry to hear about your Mom's illness. The cognitive side effects are quite common with both WBR and chemo. My Mom still complains about chemo brain after 2 months without treatment. Her oncologist told us to be patient. It will most likely improve with time. Is it possible your Mother suffered from a transient ischemic attack or stroke? It is uncommon, but it can happen. It can be easily ruled out by her doctor. It is quite possible she may be depressed also. My Mom feels depressed from time to time. A cancer diagnosis is difficult to deal with emotionally. She would probably benefit from individual or group therapy if she is open to it. Many of my Mom's friends with cancer are on anti-depressants. My Mom relies on her cds by Andrew Weil M.D. and Bernie Siegel M.D. to help her cope & inspire her to find hope. You mentioned her lack of mobility, maybe her doctor could refer her for physical therapy. I am sorry if this didn't help. I hope her doctors will answer your questions or that she will seek another opinion. Hang in there.
I will keep you & your mom in my thoughts & prayers.

Best wishes,
Jashe2350

courage90027
Posts: 1
Joined: Apr 2009

My mom is having whole brain radiation.

Could you tell me what side effects you may have gotten?

Thanks.

T.

sherryw2009
Posts: 1
Joined: May 2009

Hi bobmc, hope you are having a nice vacation and are feeling better.

I have been diagnosed with small cell lung cancer and just finished 5 rounds of chemo and 34 radiation treatments.

I will be petscanned this week to see what's what. I have been advised to have brain radiation (20 treatments)as a precaution. After reading all these testimonies it seems that I shouldn't have it done.

I certainly can get a second opinion, but I'm not sure where.

It seems like I should wait to see if I have any brain tumors before having this radiation then having only radiation directed toward the tumors.

Thoughts??

Sherry

THMM
Posts: 1
Joined: Mar 2004

My wife had large cell poorly differentiated lung cancer. Very aggresive. She had 2 mets in her brain (one a little over 1 inch). While I believe that Whole Brain Rad Therapy saved her life the affects have been devastating. New problems appear every year (for ten years). Some loss of long term memory, very pronounced loss of short term memory. She will ask me the same question 3 and 4 times within 1/2 hour. severe headaches, damage to blood vessels. Sometimes it is a job just to put a sentence together and a good portion of the time 4 or 5 words into the sentence she has forgotten what she wanted to say. A 10 year old child could look at her MRI's from 10 years ago and compare them to last month and see the drastic changes. There is a lot of lost brain tissue. I am sorry to be so frank but facts are facts. It seems a little like alzhiemers. But, she is alive and I am thankful for that although sometimes she is not.

gdpawel's picture
gdpawel
Posts: 549
Joined: May 2001

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 most leading cancer centers, use a more focused radiation field that includes only 2-3cm beyond the periphery of the tumor site. This may involve therapy once a day for about six weeks and allows radiation up to 60gy. 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, 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.

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 os 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.

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.

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.

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). Cerebral radiation necrosis is a debilitating, potentially life-threatening and increasingly frequent problem in patients with brain tumors. These symtoms can be from progression of cancer or it can be caused by the side effects of whole brain radiation. However, the FDG-Pet Scan can provide a reliable technique for diagnosing tumor recurrence from necrosis. Hyperbaric Oxygen Therapy (HBO) is now a useful terapeutic option for patients with confirmed symptomatic radiation necrosis.

The most common condition treated at some Hyperbaric Oxygen Therapy Centers is tissue injury caused by brain radiation therapy for cancer. Wound healing requires oxygen delivery to the injured tissues. Radiation damaged tissue has lost blood supply and is oxygen deprived. Chronic radiation complications result from scarring and narrowing of the blood vessels within the area which has received the treatment. Hyperbaric Oxygen Therapy provides a better healing environment and leads to the growth of new blood vessels in a process called re-vascularization. It also fights infection by direct bacteriocidal effects. Using hyperbaric treatment protocols, "most" patients with chronic radiation injuries can be cured.

unrested01
Posts: 3
Joined: May 2009

I have a dear friend who was diagnosed with small cell lung cancer last November. He made it through the chemo and radiation. The doctors say the tumors seem to be non-existent now. They want him to have whole brain radiation and from everything I am reading, it doesn't seem worth it. He is so depressed from the original diagnosis and treatment that he will not talk to anyone about it and is exibiting behavior that I am afraid could pull him quickly out of his remission. He is in no condition to make such a large decision right now, but I read that this procedure should be done quickly after the original chemo and radiation treatments.

What is the consensus on whether whole brain radiation is worth it? It seems to me that there are so many side effects that it may take away his quality of life. I have read that he could have hearing loss, go blind, lose his memories, have horrible neuroligical symptoms, etc. Is there anyone out there who had this done that thinks it was the right choice? If so, why? He has no signs of tumors in his brain right now, it is just a preventative measure. If it's a preventative measure, then why in everything that I read, the prognosis of survival after 2 years is very low, even with the whole brain radiation? If there is a 75% chance that it won't spread to his brain from the treatment, what are these patients dying from? Is it the radiation or does the cancer show back up in other parts of the body? And, what will be his quality of life if he does have the treatment?

Also, what can I do to help him with his depression? Though he admits he is severely depressed, he will not speak to anyone about it or talk to other cancer survivors, doctors, etc. He is avoiding those who love him most. I call every day and leave messages (my nickname now is "stalkeratzie"...lol) and about once a week he will call me back, but I hear the sadness in his voice. He is beating himself up inside for the negative behavior (drinking every day, still smoking, avoiding loved ones, etc.) He's suffering horrible guilt on top of everything else. No matter what I say, it doesn't get through to him.

I lost my mother to cancer in 2001 and truly want to be there for my friend. I know what a hard battle this is and it breaks my heart to see him wasting the precious time he may have left. His wife also left him after the original treatments and that makes it all worse. He was a strong man who now feels out of control with his life. I tell him I am here for him and always will be. I don't know what else I can do to help but be there, no matter what his behavior is or becomes. I can't and won't walk away. When my mother became ill, she discovered quickly who her friends really were. But, she behaved in a different manner than my friend is. Though depressed, she embraced the support and love of family and friends. She was a fighter and though she lost her battle, she never, ever gave up.

My friend fought through the chemo and radiation with a positive attitude and has now given up. He's running away from everything by drinking all the time. His wife's non-support during the diagnosis/treatments and now separation has put him in a tail spin. Any suggestions to help him since he won't seek help himself?? I feel so helpless right now. This is a person I truly love and want to be there for with support, and understanding. I use humor, treat him like I did before the illness (he says he just wants to be himself again and when he is with his drinking buddies, he feels normal again), and listen when he talks about his feelings and illness. Can someone give me some more tips of what to do?

I appreciate any comments or suggestions from anyone. Thank you.

Merfie
Posts: 1
Joined: May 2010

Holy cow! I've been diagnosed with SCLC - no treatment yet - still getting scans etc. but saw a radiologist today who's advocating WBR - in view of what I've just read (!) I think I'll pass -

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network