In Oct 2008, I was diagnosed with lng cancer and started chem almost immediately. In December they found a brain met and I went is for radiostereo surgery. In February they said that the brain tumor showed significany improvement. In May 2009 I was told that the CT scan of my lungs looked very good and they would check it every three month. They had already scheduled an MRI of my head in June as follow up on the brain tumor. Now they say I have 3 new brain mets and my oncologist is refering to a Radiation Medical Group and he thinks they will want to do whole brain radiation. I have read many articles that are not supportive of whole brain radiation. Has anyone had whole brain radiation or is there other options. I suspect I will have an appointment with the radiologist ths week.
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Whole Brain Radiation
- By DaveM
- Posted June 28, 2009 at 6:29 pm · 34 replies
- In Non-small cell lung cancer - Stage IV
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Brain tumors Dementia Radiation therapy Decadron Seizures Chemotherapy Pain Aricept Dilantin Memory Lung cancer Parkinson's disease
34 replies
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- Newest first
- By stage4survivor
- Posted June 28, 2009 at 7:04 pm
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Dave,
Please explore Gamma or Cyber Knife, consult a neurosurgeon that uses these modalities, not a doc that doesn't actually use them!
Sincerely,
G
- By TheHmip
- Posted June 28, 2009 at 7:19 pm
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I don't know what part of the country you are in, but if possible I would go to a comprehensive cancer center. I too had mets to the brain. I am in San Diego County and am receiving my treatments at UC San Diego. My radiation oncologist does not do WBR. He said that is the treatment they have been using for 30 years. What he used on me was stereotactic radiation. Non invasive....one treatment lasted about 30 minutes. If more tumors show up (just had another MRI on Fri) he will use the same procedure to zap them. The only side affects was fatigue and hair loss where the lasers zaped my head. Ask a lot of questions and do your research before you decide what's best for you.
- By gpawelski
- Posted June 29, 2009 at 11:21 am
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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.
http://www2.mdanderson.org/depts/oncolog/articles/05/1-jan/1-05-1.html
http://www2.mdanderson.org/depts/oncolog/pdfs-issues/05/oncolog1-05.pdf
http://www.cancer.gov/clinicaltrials/results/stereotactic-radiosurgery0806
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.
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.
- By drawing3d
- Posted June 29, 2009 at 2:13 pm
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Unless I had MULTIPLE brain tumors, I would never, ever do WBR.
I had one met a year and a half ago; had stereotactic to it (like you) and then 8 months later they told me it was "growing". It turned out not to be the case we learned when I had a craniotomy to have it removed. The actual brain surgery was, for me, a piece of cake. (When they went in there to suck/scoop it out, they learned that the original radiation had indeed killed the cancer. They found no live cancer cells at all.)
My understanding, you can always do WBR later (or surgery perhaps) if the gamma knife or SRS doesn't work. If you jump right into the WBR, you may not get a 2nd chance if problems arise later.
God bless,
Ellen
- By DaveM
- Posted June 29, 2009 at 2:35 pm
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Thank you all so much for your responses. The place that my HMO referred me in San Diego call me this morning to schedule an appointment for July 7th. I feel a lot more equipped to have a discussion with the Radiologist.
- By moretime
- Posted June 29, 2009 at 3:03 pm
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Our experience with the Scripps clinic radiologists was disappointing. The doctor was adamant that more than one lesion required whole brain radiation. This was with small cell lung cancer. The doctor refused to consider any other type of radiation. Our choice was WBR or nothing. May you have better choices.
- By drawing3d
- Posted June 29, 2009 at 7:06 pm
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You have non-small cell and that is treated differently than small cell when it comes to WBR. You can be less aggressive.
Do not let them "push" or bully you into any thing you aren't 100% comfortable with. It is your life, not theirs.
When I was in the hospital after diagnosis when my lung collapsed, the radiology dept came in my room every single day trying to push me into making a decision. Remember too, it is $$ to them!
I will pray that God leads your steps and gives you a clear mind.
Ellen
- By moretime
- Posted June 29, 2009 at 8:05 pm
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I learned while searching the net that with patients 60 or 65 years or older who receive WBR there is a strong chance of dementia.
- By kritiki
- Posted June 30, 2009 at 11:31 am
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What is this WBR? My husband, stage 4 Nsclc just finished 15 whole brain Radiation treatments. The brain tumor, which had metastasized from his lung was removed. It had been pressing on his speeh center. Tomorrow we begin 35 Radiation treatment program, along with a once weekly chemo, all focused on his lung.
Anyone else have a similar situation? My husband is 77.
I will appreciate any insights or shared experience that you might have.
Thanks!
- By stage4survivor
- Posted June 30, 2009 at 11:37 am
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Hmmm....anyone know what the fees are for WBR(whole brain radiation) per session ?
How about G/K?
G
- By NSCLCdaughter
- Posted June 30, 2009 at 12:42 pm
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My mother had WBR because she had several very small spots on her brain which were metastatic from lung cancer.
In hindsight, we would have opted to NOT do the WBR. She began to change drastically mentally and never recovered from her fight once the radiation began. She had been on her feet at least prior to the radiation.
It was far from palliative in her case. We feel it was a nightmare. That's just the way my sisters and I feel.
- By gpawelski
- Posted June 30, 2009 at 4:07 pm
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G.
I often thought about the problem of unintended self-interest bias which may be a factor in this problem.
Some years back, the government had asked Joseph P. Newhouse, a health policy professor at Harvard, and his colleagues to look into how the Medicare reimbursement system may affect how doctors prescribe chemotherapy.
His study "Does Reimbursement Influence Chemotherapy Treatment For Cancer Patients?" co-authored with Dr. Craig C. Earle, was finally published in Health Affairs in 2006. This joint Michigan/Harvard study added to the 'smoking gun' survey by Dr. Neil Love, "Patterns of Care."
I wrote to both of them to ask if their study methodology on reimbursements influencing chemotherapy treatments, could be applied to reimbursements influencing radiation treatment?
Before the days and widespread use of Stereotatic, Gamma-Knife, Cyber-Knife, and the like, the most expensive treatment for postoperative brain surgery for a solitary brain metastasis was whole brain radiation. With the newer treatments, whole brain radiation was abandoned because of the substantial neurological deficits that resulted with its use, sometimes appearing a considerable time after treatment. Today, cutting-edge clinical practices use a more "focused" radiation field.
During the last twenty years when the preponderance of cancer care shifted from the institution-based, inpatient setting to community-based, ambulatory sites for treating the majority of the nation's cancer patients, many of these community-based settings did not have the cutting-edge high-tech toys.
Was there an incentive for radiation oncologists at community cancer centers to chose whole brain radiation treatments, as these were the most expensive, for them? Could Newhouse's methodology collect data documenting a clear association between reimbursement to radiation oncologists for whole brain radiation treatment which is based on how much incentive occurs to the radiation oncologist?
They thought that there were similar issues, but their methodology would be different because radiation isn't something that individual doctors buy, sometimes at a discount, and then profit from if they're reimbursed more for it, as in the case with chemotherapy.
They relied upon price variation across regions in Medicare, which was pseudo-random and had been eliminated. To their knowledge, there was no comparable price variation in radiology that they could have used.
However, they did mention a radiation oncologist in Michigan, who had done some work looking at the number of palliative fractions of radiation given to patients with advanced lung cancer as being a situation in which there is a lot of discretion on the part of the physicians: one fraction is as good as 10, but 10 will reimburse more. I'm not sure if he ever published or presented his results? Interesting!
Professional liability in the field of radiation oncology may result from inadequate explanation to the patient of the intent, risks, side effects and expected results of radiation treatment. A patient must always be fully informed whenever risky protocols are followed. It is vital that the radiation oncologist coordinate the radiation treatments with surgeons so as to ensure that any treatments follow accepted protocol.
- By mrwinget
- Posted June 30, 2009 at 6:28 pm
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My father underwent WBR and changed drastically after his final session. I know it was the WBR. He only did 10 sessions and halfway through, his speech became so slurred he could hardly talk and his balance was off so bad he started falling. He also became so weak that he no longer could do even the smallest task. He could not leave his chair. Prior to the 10 WBR sessions, he was up and walking around and eating alot more. I wish we had never ever done the WBR, it took him away from us sooner than the cancer did.
- By NSCLCdaughter
- Posted July 1, 2009 at 1:54 am
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mrwinget, ditto for our experience with our mother and WBR. She lost her ability to talk and walk, and within exactly three weeks, she died. She, too, had about 10 WBR sessions.
We don't know how much longer she would have lived had she not had the WBR. She was scared to death of it, but one of my sisters talked her into it as the doctors played it up.
Had we known the course, we would have never subjected her to this treatment. They called it "palliative," but it was anything but that.
When your loved on is older than 70, think long and hard about this procedure after you do the research. Decide what is most important.
- By StuartFL
- Posted July 1, 2009 at 7:00 am
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NSCL,
I agree with you. In our case the WBR took quality of life from my dad.
pam
- By Ingrid118
- Posted July 1, 2009 at 7:50 am
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I am absolutely horrified reading about the experiences with WBR. My Mom finished 15 WBR sessions May 15 and has not been the same since. I am extremely worried and wish I would have researched more before we put my Mom through this - I am so upset with myself, I have researched everything about my Mom's care since she was diagnosed in Nov 2008. I feel like I dropped the ball. We were so rushed into the WBR, they said it was our only option when they found that the NSCLC spread to her brain. We found out on a Wednesday and they acting as if we had no time, she was told to meet with the Radiologist and start WBR two days later. They even told us to skip her Chemo treatments because we HAD to take care of the brain mets immediately. They said they were very, very small, but there were several. We were never told that WBR would cause any side effects, except fatigue & hair loss. My Mom's speech is so slurred that you can hardly understand her, she has fallen several times and walks like she is 30 yrs older than she is - she is only 62. I feel completely mislead, the dr's never said any of this was even a possibility. I feel that I should confront them on misleading us, but thats not goign to undo what is already done. My Mom was doing really well before the WBR, now she is so weak and has these debilitating side effects. Is there any way she will recover from this? Like I mentioned she is only 62. I am starting to doubt everything these dr's tell us anymore. The standard of care in the medical community has been such a shock to me from the start of this nightmare. Any advice or is there anyone who made out ok after WBR?
- By gpawelski
- Posted July 1, 2009 at 8:28 am
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HBOT For Radiation-induced Necrosis
http://www.inspire.com/groups/advanced-breast-cancer/journal/hbot-for-radia tion-induced-necrosis/
- By TinaIrena
- Posted July 1, 2009 at 8:46 am
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Dave,
I had Gamma knife on two brain tumors last October at Tuft's Medical Center in Boston. At first my Oncologist tried to rush me into WBR but I am trying to avoid that at all costs. The Gamma knife showed shrinking in the months to following however about a month ago I had a small seizure followed by a more severe one five days later. A brain MRI showed growth and brain swelling at one of the tumor sites. After conferring with Boston my Radiologist decided that this could be Radiation Necrosis, a build up of dead brain cells from the radiation. However on my own research it appears that this is just a guess since they can't know for sure unless they do a biopsy. I'm now on Dilantin for seizures and the Decadron a steroid for the brain swelling. I had a terrible manic episode last time I was on Decadron so my family and I are very afraid of it. I don't know what is next for me, but I do know the last resort will be WBR. I go back for another MRI next month maybe then we'll have a better idea what is going on.
By the way according to my insurance statement the Gamma Knife cost a little over $100,000. I hope Medicare would allow me to have this treatment again if needed since I no longer have that insurance.
Good luck,
Tina
- By dwareham
- Posted July 1, 2009 at 10:53 am
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My dad (71) had WBR in November. He had four mets that they could see and they assumed he had several / many microscopic ones. He sailed through it.
Now almost eight months later, we believe it was the right thing to do. The only side effect he suffered from was fatigue and the mets disappeared.
He also had cyberknife for one met that grew afterwards and he did fine through that.
As far as his mental state, he did go through a period of "dementia" but we believe this was caused by being in the hospital too long (chemo put him there). When he came home, he snapped out of it.
We do still give him Aricept, an Alzheimer's drug that apparently helps post-brain-radiated patients. He is definitely much clearer now than he was in November. He's not 100% mentally but I'd say he's about 90%.
I know many people have bad experiences on WBR, but ours was altogether positive and productive.
Good luck!
- By stage4survivor
- Posted July 1, 2009 at 11:50 am
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dwareham,
I'm really puzzled why WBR was used for several lesions and THEN, C/K?
Tina,
It's sad you've had these issues post G/K but, I completely agree with you on WBR.
Ingrid,
I won't post in a public forum how I would proceed and it's not your fault, you trusted her physicians.
GP,
You are the MAN! You ALWAYS provide the best research for everyone here. I owe you for still having ANY cognitive skills left, such as they are.
$100K for G/K? WOW, guess I didn't pay any attention when mine were done.
G
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