Who has had brain mets cut out?

• By chessie-too
• Posted August 27, 2008 at 6:26 pm

Hi Ellen,

So sorry to hear about the latest developments.

I just wanted you to know that I'm thinking about you and will say a few special prayers for you.

Keep in touch and God Bless.

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• By NikkiF
• Posted August 27, 2008 at 7:06 pm

Hi Ellen,

I'm so sorry to hear what's going on. My mom had surgery to remove a brain met back in March. It was approximately 2 cm X 4 cm and was located on the left side, mid-upper part of her brain (I don't recall the technical term for the location). She spent about 4 hours in the operating room and the doctor surprised us when he came out and told us he'd already exchanged words with her. She was supposed to spend 2 days in ICU and potentially 2 weeks in the hopsital but they moved her out of ICU within 24 hours and she was home in 4 days. The tumor caused her some significant memory loss as well as the loss of function in her right hand and leg but once removed she was as good as new (minus the lung issue). I would say the only challenge she had was getting her incision to heal but her doctor said that was due to the WBR she received not long after the surgery. She unfortuantely had a stroke a couple months ago (apparently caused by the chemotherapy?) and she still is recovering from that so I can't say now with certainty that she doesn't have any delayed effects. I wish you all the best and pray for a speedy recovery.

Nikki

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• By tazzy1994
• Posted August 27, 2008 at 7:14 pm

sorry about the news. May all go well for you.
My husband had surgery for brain mets, and then gamma knife for activity around the surgery site. Have they talked about the gamma knife? The healing time was faster. The side effects from both were not long lasting or severe. He was "foggy " and his speech was similar to someone that has a slight stutter or hesitation for a few weeks. But he practiced speaking and reading out loud and did tons of puzzles. That was in Dec 07 and Feb 08. He has had radiation and chemo. The only lasting effect from the surgery is a slight hesitation in speech when tired and sometimes he forgets words (I do that !!) . I got him Focus Factor vitamins and I feel they help. He is 52 and works full time.
Lots of prayers to you. We get MRI & PET 9/10. Please keep him in your thoughts.

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• By cjp1
• Posted August 27, 2008 at 9:00 pm

Hi Ellen,

My mom (stage 4 nsclc) just had one 2cm lung met removed from left parietal lobe at Duke in July. Surgery lasted about 2 hrs, 1 night in NICU, and then 1 more night in hospital. I think she was released too early as she developed some post surgical complications (pneumonia, collapsed lung). She also had a horrible reaction to the dilantin (anti seizure meds) and was very emotional/weepy from the high doses of decadron. She opted out of WBR (protocol following resection) and instead had stereotactic radiation to the tumor cavity 3 weeks post surgery (most major cancer centers are now offering this as a trial as this may become the standard practice someday). The surgery was more than we anticipated as far as size of incision and complications but she is now doing remarkably well. She'll continue to be followed every 3 months with an MRI so we'll see how this treatment worked. I wish you all the best.

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• By stage4survivor
• Posted August 27, 2008 at 9:40 pm

Hi Ellen,

Since I'm not much of a typist and it would take a long time to ask you some questions. I'll offer to send you my phone number privately. The area of this tumor is certainly something to be concerned about. Have you seen Fred Lang at MDA?

Warmly,

George

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• By tjak
• Posted August 27, 2008 at 10:33 pm

HI,
My mom had a craniotomy on the right side in April. SHe was in surgery almost 10 hours and we were really getting nervous, but when she came out and was being transferred to ICU, she was waving to us and we were able to talk to her right away. She was pretty alert considering the situation and we were really encouraged. THe doctors had said that she had about a 50% chance of losing control of her left side, but she had no problems with that. The next day after the surgery she was very out of it (lots of meds) and there was pain at the incision site. We took her home 4 days later (I was terrified) but overall she was okay. The decadron they gave her afterwards made it hard for her to sleep but we didn't really notice any behavior changes as some people have. This was followed by WBR.
I think the most lasting effect of all this was a little fuzziness, espeically when she's tired. She definitely gets more tired now than she did before but she's doing well overall. We're hoping for good news because the last pet scan showed some "activity". They weren't clear what it was so we redid the scan and are waiting for results.

Good luck to you!

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• By gpawelski
• Posted August 28, 2008 at 10:04 am

My wife developed a large (3.5cm) solitary cerebellar brain tumor post-chemotherapy in 1998. The tumor was excised by a neurosurgeon who wrote the text books on brain surgeries.

Her "attitude" going into and after surgery was always her biggest asset. She went into these procedures with an attitude that was overwhelming to all those around her. A positive attitude is good!

The most critical part was the two days out of surgery. It was scary, of sorts, watching her go through some of the most unique sequence of events. And it was extremely educational see how the brain is so resilient to trauma. And at times, it was humorous (the mantras), and she loved to hear about it after she recuperated.

The mantra on day one was "I gotta pee." Of course, she had a catheter in. On day two, it was "Henry! Henry Aldridge!" If any are old enough to remember the old radio show. Henry! Henry Aldridge! Coming mother! Her brother James Henry came to visit her on day two. She recognized him and went back to their childhood memories.

Her surgery was on a Friday and she was released from the hospital the following Wednesday. She was warm and loving during the long trip back home from the hospital. She did not have any residual infections from the procedure.

She was supposed to be followed-up with "focal" radiation to the "local" tumor bed. However, the rad onc at our local community hospital was a "John Wayne" type, "we are a lot more aggressive here."

He took it upon himself (with no consultation with the surgeon) to give her 5 fractions (at 2.0gy per) of focal radiation to the local tumor bed, plus 20 fractions (at 2.0gy per) of Whole Brain Radiation! I won't explain to you here about the side effects of this procedure.

Again, attitude is good! In fact, it's GREAT!

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• By drawing3d
• Posted August 28, 2008 at 11:30 am

I am travelling back from Texas to FL right now, reading these posts in between signals on the interstate, but I wanted to tell everyone how very much I appreciate you taking the time to share your information with me.

Please keep it coming! i am also trying to get referals to accomplished neurosurgeons for 2nd opinions who are experts in the cerebellum region of the brain. I would appreciate doc referals (their name and location) if you know of any cerebellum specialists. I don't think I have too much time to contemplate this due to the size of the tumor now.

God bless everyone,
Ellen

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• By stage4survivor
• Posted August 28, 2008 at 12:00 pm

Hi Ellen,

Great talking to you. Call anytime! Given my own experience, Patrick Kelly and John Golfinos are the best in the world. I'm happy I haven't seen them in 3-4 years.

Warmly,

George

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• By gpawelski
• Posted August 28, 2008 at 4:56 pm

It's a small, small world Ellen (Karma?). If you live in Florida and want a referal to a very accomplished neurosurgeon, the one my wife had excised her cerebellar tumor in 1998 at Penn State Hershey Medical Center, his name is Dr. Ralph A.W. Lehman.

When Hershey and Geisenger broke up in 1999 and imploded, and they wanted to give him more work (he did have a life outside of work), he decided to head south to Tampa, FL. I know people here in southeastern Pennsylvania who would travel all the way to Florida for his services.

http://www.healthcare.com/profile/ralph-a-w-lehman/

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• By drawing3d
• Posted August 29, 2008 at 1:20 am

Dear George;

As many times as we have "chatted" online, I really enjoyed talking to 'the real" George today too! I so appreciate your time.

I tried to get Dr. Kelly...he is currently out on a six month sabbatical, but should be back in September. I will try to get more info tomorrow now that I am back home...it may be possible if he can fit me in for an opinion and review soon next month.

Thank you so much! I will let you know what I find out.

Thanks again and talk to you soon,
Ellen

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• By drawing3d
• Posted August 29, 2008 at 1:30 am

Dear gpawelski;

Thank you so much for the story of your wife's experiences. It is proof positive of the wonderful human spirit, as far as she is concerned. As for the pushy cowboy, that is a horrible tragedy and I sincerely hope he is no longer in the patient care business, to put it mildly.

I looked up Dr. Lehman; he has outstanding credentials, but he is chief of neurosurgery at the James A. Haley Veterans Medical Center; this is not an option for me unfortunately.

You were so very kind to give me referral and yes, Tampa would have been much closer than Texas or anywhere else, even though I am willing to travel anywhere for the right surgeon.

Thank you for all of the time you spend online answering posts just like mine. God bless you,
Ellen

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• By gpawelski
• Posted August 29, 2008 at 12:52 pm

Ellen

Ask Dr. Lehman if he has an appointment at another institution. Many are associated with major Universities. He may just spend most of his time at a VAMC.

The Tampa VAMC is assoicated with University of South Florida and may also have a connection with Moffitt Cancer Center. See if he does cases anywhere else in town. Posterior fossa tumors are challenging.

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• By gpawelski
• Posted September 7, 2008 at 9:36 am

Ellen

Radiation necrosis is a more serious reaction to radiosurgery. It may result from the death of tumor cells and associated reaction in surrounding normal brain, or it 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). Clinical symptoms are more often associated with radiation necrosis than with a radiation reaction.

Differentiating between radiation necrosis and tumor progression is often difficult, and radioisotope brain scanning with thallium or position emission tomographic (PET) scanning may help in determining the pathologic basis of such reactions. In some cases, a stereotactic biopsy may be required to establish the correct pathology, but experience in the radiosurgical treatment of brain tumors indicates that most of what appears on scans to be radiation necrosis is actually a combination of necrotic tissue and viable tumor cells.

If a severe radiation reaction or radiation necrosis is associated with significant clinical symptoms that fail to respond to corticosteroids, surgical resection of the mass may be the only recourse to improve the quality of the patient's life.

Radiation necrosis occurs more commonly after brachytherapy and radiosurgery but can occur after conventional RT as well. Long-term effects can be initially managed to some degree with corticosteroids and surgery to remove necrotic tissue. The major complication of both brachytherapy and radiosurgery is the development of symptomatic radiation necrosis requiring prolonged administration of steroids and reoperation. The rate of reoperation is 30%-40%, usually within six months.

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• By drawing3d
• Posted September 7, 2008 at 8:39 pm

Thank you for that info...

MD Aanderson seems to keep pushing WBR on me after the craniotomy...I personally do not at this point feel it is necessary and definitely not wanted - not for one solitary tumor when other options are available.

Now since my tumor failed to permenantly respond to stereotactic radiation back in Jan., one of the questions I plan to ask is my risk of edema and necrosis to the focal tumor bed after excision. I thought I read somewhere that most metastatic tumors recur...I have much to learn.

Hopefully I will know by tomorrow, at the latest by Tuesday whether I will be travelling west to Houston or NW to Seattle...either way, there's a hurricane coming so I will have to get out of dodge if I am going to be leaving at all...

Love,
Ellen

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• By gpawelski
• Posted September 7, 2008 at 9:05 pm

It is surprising that MD Anderson would be pushing WBR on you for a solitary tumor. As reported in their OncoLog, in the past the only treatment for multiple metastases was WBR, which on its own had little effect on survival.

Dr. Jeffery Weinberg at the Department of Neurosurgery has said that 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 Accelarator. The "critical" idea is to "focally" treat "all" tumors.

WBR is the most damaging of all types of radition treatments and causes the most severe side effects in the long run to patients. In the past, patients who were candidates for WBR were selected because they were thought to have limited survival times of less than 1-2 years. I'm sure you have intentions to survive much longer than 1-2 years!

Many physicians question the use of WBR in most cases as (in your case) one-session radiosurgery treatment can be repeated for original tumor 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 WBR without the side effects.

In your case, is the lesion in your cerebellum lighting up on PET? If not, is it recurrence, or is it just necrotic tissue? Or could it be a combination of both?

New Perspectives on Brain Metastasis

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

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• By gpawelski
• Posted October 15, 2008 at 8:13 pm

Whole Brain Radiation Therapy vs. Stereotactic Radiosurgery on Brain Mets

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!

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