Family member having a brain tumor removed from cerebellum

ptown · Regular Joined: 14 Jan 2009 Posts: 13

Hi everyone.
A family member is having a brain lesion removed from her cerebellum today. There has been a lot of hush-hush in the family so we are not getting many details. I don't want to specify my relationship to her in case she comes on this site. She will feel insulted and angry I am talking about her behind her back. She's weird like that.
Is a lesion and a tumor the same thing? She is in her mid 60s. I was told it is lung cancer that metastasized. There is apparently only one lesion that may not be full removable and may require a gamma knife if surgery can only remove a part of the lesion.
Nobody will say at what stage the lung cancer is in. She is a non smoker now but smoked in her late teens and 20s.
Once the lesion (or tumor) is gone, then what? That won't kill the lung cancer. I assume chemo will be the treatment for the lung cancer. My understanding is that cancer is treatable and many people survive and live a normal life span cancer-free.

Can anyone give me any information? I realize I am not giving YOU much to go on but we're being shielded from details right now.
Thanks for any info you can give.
ptown.

In

Hi Ptown,

I'm sorry about the news of your family member. With little information it is hard to know what to advise or reply to.

I'm going to copy and move your post to the brain cancer thread. You'll hopefuly get some answers sooner.

In
_________________
Thinking of you Inica

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

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ptown · Regular Joined: 14 Jan 2009 Posts: 13

here's more info. maybe someone on here will have a bit of insight?
Another family member emailed:
"Today she had a craniotomy and removal of a cerebellar tumor close enough to the brain stem that death could have been an outcome. Nevertheless, we are encouraged by the positive results that her medical oncologist reported as to her lung cancers."

brainman

Hi ptown, I am sorry about this family members health concerns. I will try to help answer your questions.

Is a lesion and a tumor the same thing?

Not necessarily. Let me put it this way: cancer is a tumor but not all tumors are cancer; tumors are lesions but not all lesions are tumors. Does that make sense?
I was told it is lung cancer that metastasized.

Unfortunately, this does answer #1. If it is a metastasis, then it is cancer (tumor).
There is apparently only one lesion that may not be full removable and may require a gamma knife if surgery can only remove a part of the lesion.

If there is only one lesion on the brain, gamma knife is the way to go... more than one and they will lean toward Whole Brain Radiation.
Nobody will say at what stage the lung cancer is in.

If it has spread to her brain, by definition, she has Stage IV Lung Cancer
She is a non smoker now but smoked in her late teens and 20s.

Smoking is only a contributing factor not a determining factor. There are a lot of true non smokers who have Lung Cancer and a lot of people who smoke all of their lives but never get Lung Cancer. You just have to do all that you can to minimize the risk.
Once the lesion (or tumor) is gone, then what? That won't kill the lung cancer. I assume chemo will be the treatment for the lung cancer.

You are correct in your assumption. Even if they manage to kill all cancer cells in her brain with radiation, there is still the Lung Cancer to deal with. Since it has already spread, chemotherapy is the direction that the will go.
My understanding is that cancer is treatable and many people survive and live a normal life span cancer-free.

Again, correct but a little optimistic. Nothing wrong with being positive but the reality is that this is a life changing event for your relative. Life will probably never be "normal." Even if she becomes cancer free, she will need a new definition for "normal."

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2403

Hi,

I'm very sorry to hear of this diagnosis for your family member.

The lung cancer forum is indeed the correct place to post as the brain is a very common site for metastasis. I'm happy to hear the surgery went well and that this person will be on their way to systemic chemo treatment to work on other tumors. She may have to also do Whole Brain Radiation (WBR) depending on what type of lung cancer or site specific radiation to the brain. Cyber-knife is great, depending on the location of the tumor in the brain. My BIL had surgery and site specific radiation with good results. In lung cancer cases (and many other types of cancer) chemotherapy cannot cross the blood-brain barrier, so radiation of some type or surgery is the way to address brain mets.

I agree with Brainman -- being optimistic is a good thing, but you must also have a strong dose of realism in the mix. Most Stage IV cancers are not curable, but they are treatable. Let's hope her/his overall tumor burden isn't too great and they respond well to chemo.

Please know that a Stage IV diagnosis automatically qualifies the person for disability. I say this now because it takes 6 months to receive the disability payments, so signing up as quickly as possible is a help if finances are a concern.

About 50% of new lung cancer diagnoses are for people who never smoked or quit smoking decades ago, so Brainman is correct again -- smoking is definitely a contributing factor in the majority of cases, but not in all. Lungs never return to a "pre-smoking" condition despite what has been claimed over the years. Quitting is sure better than continuing to smoke though because that is one of the best ways to reduce the risk!

Keep us posted and you all will be in my prayers. I know how terribly worried you are for this loved one and again, I'm so very sorry.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

HulaMom

Wow. How horrible to only get bits and pieces but as Jim and PBJ answered, it isn't curable, its treatable. Basically you buy time with treatment. Some react badly to lung radiation as in my case - it shrunk the tumors but scarred my lungs so bad that breathing is worse now than at the start. But, I was cancer free for 9 months and am going on almost 2 years since I started the battle. It does tend to change one's definition of normal. My new normal involves CT scans every 3 months along with Oncologist visits every 6-8 months. Poor immunity makes it so I either need to wear a mask or just stay away from crowds. I am constantly sanitizing my hands. BUT I do get quality time with my family. Something we didn't think would happen. The statistics are against us but SOME will live 10+ years! So it isn't the death sentence it once was. Let's hope for your sake that the family shares more info so as to keep you out of the dark. Things always seem worse when you don't have the whole story! Praying for you and the family (as well as the patient).
_________________
47 YOA female. NSCLC IV Squamous cell. dx 7/07. Radiation, chemo (carboplatin/Taxotere). Cancer free 3/08! Cancer mets to liver 12/08. Started Tarceva 1/26/09-4/10/09, liver tumor tripled in size. Started Alimta. Down to 84 pounds! Stopped Alimta and started Gemzar on 5/2. Stopped chemo went into HospiceJuly 24 2009, with prognosis of 3, maybe 4 months left.

ptown · Regular Joined: 14 Jan 2009 Posts: 13

thanks so much everyone. here is the latest email i got:

There is a test developed by the National Institute for Cancer Research, of which Dr. xxx, her treating medical oncologist, is the Director. The test distinguishes people whose lung cancer is smoking related from those that are not. If she falls into the no relation category, the treatment will be a pill a day. Of the thousands of people who have been given this pill ( because they had non-tobacco-related cancer ), 95% responded by a total disappearance of the cancers. Let us hope that she falls into that category and that she responds as did the 95% who did. If things are different, as to the test and/or her response to the new pill, she may undergo surgery to remove each tumor and its surrounding normal tissue, to a small extent, re the latter, and receive rads to the area surgerized, and that should buy her another 15-20 years of life. Let us hope for the best and remain optimistic. I cannot now answer the question of when or if she will be
cancer-free, but I am optimistic that in the right hands, and there is no doubt that she is, she will enjoy the best possible outcome for whatever they do to her.
--------------
the advice above regarding stage IV cancer is not revealed in the email from 1 family member about the person with the cancer. from the email above, with no mention of stage 4, it doesn't sound so pessimistic, thank god.
am i missing something?

thanks so much everyone.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2403

Ptown,

You pose some very difficult questions for someone to answer because you've JUST had a loved one diagnosed with Stage IV (or what sounds like Stage IV NSCLC, but you haven't mentioned the tumor in her lung), are looking for anything positive, and we also have forum members who are in the midst of a battle for their lives. I believe in looking at the positive in any cancer diagnosis, because it is best to have a fighting attitude going into the journey.

With that being said, the pill they are talking about is Tarceva. Tarceva has its best results in Asian, never-smoking women. That's not to say it won't work well for others -- even former smokers. It's ALL based on whether the patient has the EGFR mutation. (For the most part, you can toss away any ideas about whether the person ever smoked and how they will respond to treatment, with this ONE exception. Otherwise it's all lung cancer and the point is moot.) EGRF mutations can only be determined through tests done on tissue samples from the tumor itself and, although it's becoming a little more common to actually test the tissue, it's not done universally. It might be happening for your relative because of her particular oncologist. It wasn't done for my husband and they did a VAT's wedge-section biopsy. Times change quickly in the world of cancer, so they MAY be testing for the EGFR mutation more often now.

Tarceva can be a little miracle pill for some and make the cancer in the body disappear for periods exceeding two years. It can also hold the cancer stable. That is IF the person HAS the EGFR mutation. Generally, Tarceva is not used as a solo first-line treatment, unless the tissue tests have been done, but even then I don't see it used as first line too often (another exception would be if the person is too frail to undergo common first line treatment.) It can be added to typical first-line doublets and I think we have some people on the forums who have had this experience. (There is some anecdotal evidence that Tarceva MAY cross the blood/brain barrier, but it's not ironclad.) I do think that the 95% rate, even with the EGFR mutation is a bit optimistic, but maybe better stats have arisen since it's been on the market for about 4 years now.

The only other thing I can add to your post is that IF your relative is a stage IV, it's not a matter of removing a tumor here or there. Stage IV means it has jumped into the blood stream and traveled to other areas of the body. This is how lung cancer metastasizes. Chemo can kill many of the cells, but the odds are there will always be some cancer cells floating about waiting to find a new place to form another tumor.

My best advice to you, in light of the dearth of information being provided to you, is to really study the posts on this forum to see how this disease typically goes. I found that by studying profiles, I was able to assess where my husband fit into the whole scheme of things. You have to look at a variety of things like sub-type, cell differentiation, and tumor burden. He did survive beyond my wildest expectations, but it sure wasn't long enough for me. Tossing statistics out is a red herring for most of us here because each person owns a unique chemical system and what works for some, may not work for others. (Case in point is an in-law relative of mine who passed from lung cancer recently. This person flew through 2 lines of chemo and radiation, but was a total non-responder -- rare, but does happen.)

Keep us posted and I hope this helped. I'm sorry that the information is not forthcoming from your other relative, but it's just how some people handle a cancer diagnosis. I'm somewhat surprised that people still are so hush-hush about the "C-word" nowadays and I can see how frustrating this is for you.

God bless,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

HulaMom

Good info PBJ! I too am trying Tarceva even though the doctor thinks it "probably" won't work. My reading between the lines says "but it COULD" so why not toss is at the Beast. Sure can't hurt (aside from side effects but hey, the cancer has side effects). They never tested my tumor for Tarceva and the doc originally had planned on it if the first round chemo didn't work. But the first round did great and put me cancer free for 9 month, something that I am thankful for! That 9 months allowed me more quality time with family and let me see my grand baby! ANY treatment that does this is great! But, as was expected, the Beast returned. A tad bit quicker than expected but we will fight it off again. A positive attitude is a MUST in a battle like this - it's like picturing your body fighting the Beast with missiles/swords, whatever. It helps. Focus on the good things, even in the bad! So let's continue praying and hoping for any kind of recovery!
_________________
47 YOA female. NSCLC IV Squamous cell. dx 7/07. Radiation, chemo (carboplatin/Taxotere). Cancer free 3/08! Cancer mets to liver 12/08. Started Tarceva 1/26/09-4/10/09, liver tumor tripled in size. Started Alimta. Down to 84 pounds! Stopped Alimta and started Gemzar on 5/2. Stopped chemo went into HospiceJuly 24 2009, with prognosis of 3, maybe 4 months left.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2403

I agree 100% Hulamom! Heck, you reach the point where "stable" sounds like manna from Heaven! Very Happy

We did the Tarceva route blindly too and felt it was well-worth the crap-shoot. We were of the "throw whatever you've got and see what sticks" mentality. I'm sure you know that often it seems the bigger the reaction, the better chance that it is working. I'm hoping for a nasty rash for you then! Laughing

You know what I mean... Embarassed

Nine months was HUGE, as I've said before. My husband was never cancer free, but still was kicking butt and taking names for quite awhile. You sound so much like him -- he visualized the Army, Marines, etc. were in there fighting his tumors with all kinds of weapons. He said he chalked the Tarceva episode off to the U.N. forces being called in. He was a funny guy. Wink

We all pray for the day when the big "aha" is made and lung cancer can be cured.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

HulaMom · Posted: Sun Jan 18, 2009 11:34 pm Post subject: I would have liked your hubby!

I tend to be known as a fighter. From NY originally, am Irish and had red hair prior to chemo (its now dark brown and curlier - I love it!). So add it up and you get stubborn. Oh, and prior service Army. Maybe there is something about the Army toughening you up! Could just be Irish and NY though! Hehehe. We have same mentality - see if massive bombing kills it again. Being realistic, we know it will keep coming back and at some point chemo just ain't gonna work. BUT, maybe they will discover new meds, new treatments. One thing I have learned is as long as I have life in me, there is hope! And I get it about the rash. They CLAIM there is no truth to it but you notice that those who don't get results don't get the rash bad. Dr. already prescribed ointments and a special antibiotic for in case the rash gets severe. So even though he doesn't think Tarceva will work, he is at least PLANNING on the side effects! I too wanna hope for the rash! But I also am almost over this infection so we may toss real chemo plus the Tarceva at it. I am ready for yet another roller coaster ride! Will know Thursday....
_________________
47 YOA female. NSCLC IV Squamous cell. dx 7/07. Radiation, chemo (carboplatin/Taxotere). Cancer free 3/08! Cancer mets to liver 12/08. Started Tarceva 1/26/09-4/10/09, liver tumor tripled in size. Started Alimta. Down to 84 pounds! Stopped Alimta and started Gemzar on 5/2. Stopped chemo went into HospiceJuly 24 2009, with prognosis of 3, maybe 4 months left.

ptown · Regular Joined: 14 Jan 2009 Posts: 13

Email from family member:
The PET scan showed that there unfortunately several metastases, one in the lymph chain on left neck, another within the body of lumbar vertebra #5, another within the mediastinum, and another bordering the arterial entry to the liver. So, no thoracotomy. Her oncologist is hopeful that her tumor will come back non-smoking related, in which case Tarvesa, a new pill, can be given on a daily basis. If she responds well (presuming she is a candidate for the pill), the tumors will show significant shrinkage within a couple of weeks, and if so, a boost with another new anticancer drug will be added to her regimen. If she does not respond to the Tarvesa, she will receive the latest IV once/weekly treatment for six weeks before any clear results can be assessed and applied to plans for continued therapy. So, although we had hoped that there would be no mets, it was highly unlikely, since there had already been two: the second one in the lung, and the brain one. We will know next Tuesday about the smoking-relatedness of her cancer, and hope that is the case for her, as the oncologist said that over 90% of patients respond very well to Tarvesa and the additional new anticancer pill. This response would include the death of the cancer metastases found on the PET scan, if she falls into that lucky group of responders. So, the waiting is tough, but her attitude is mostly positive about beating this nasty stuff with modern science. And every other oncologic specialist (the neurosurgeon, the radiologist, and the thoracic surgeon) said we could not be in better hands than under the care of...

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2403

Hi ptown,

Sounds like the doctors are going to be testing the tumor to see if she has the EGFR mutation. If she does, then her chances of having a good response to Tarceva are high. Tarceva will shrink tumors in a decent percentage of cases and hold things stable in many more.

I wish her good luck and let us know how things are going once they have the results in.

God bless,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

ptown · Regular Joined: 14 Jan 2009 Posts: 13

the latest update:
She is tired all day with rare moments of enthusiasm and distraction from the constant awareness that fighting cancer feels like climbing Mt. Everest every day. She certainly sleeps well if she takes enough sleeping meds, but if she wakens at 1:30 am to go to the loo, she often cannot fall back asleep until 5:30 am, and I get up at 6:30 nowadays. She is usually asleep by 8:00 p.m., eating little food all day, and somehow maintaining her new weight of about 127 lbs. She actually has skinny thighs for the first time in her adult life. She wears extra small jeans, and spandex-like long pants. She beats herself up over her chronic fatigue, despite knowing that it is healing and natural for someone who spent 5 hours under GA having her brain met removed, and two weeks later having the area under the removed tumor blasted for a half hour by gamma rays, which have to pass through the visual cortex of the brain to get there, so naturally she has been experiencing bizarre visual phenomena that fluctuate from hour to hour, and we are going to see an eye doc tomorrow a.m. to make sure that it's nothing caused by something in the eye itself, like I had about fifteen years ago, when my vitreous detached from the retina and tore it a bit, requiring cryosurgery to fix it. Thankfully, it has stayed stable ever since. Keep sending prayerful thoughts her way, as neither she nor I am ready for her to go. xoxox

AND

She did not pass the test that would have made her eligible to take the Tarceva chemo pill that was being considered. It only works on just over half the people who take it, but her cancer turns out to have been smoking-related.On the other hand, although we are both disappointed that she has a smoking-related lung CA, she starts a course of chemotherapy this Friday. It involves two hours of IV drip every third week for a total of six sessions, and between each pair, a CTscan will determine her course and whether the cocktail of cancer-killing drugs should be modified or not. xoxo

--------
why on earth would someone want to NOT EAT and lose weight? doesn't food make one strong to fight this disease?
all advice/info welcome. be blunt.

HulaMom

Cancer causes one's metabolism to go nuts and basically you lose weight unless you exceed your normal caloric intake. Most of us battle to maintain or even gain a bit. I knew my cancer had returned before my last CT scan only because I lost a lot of weight in a 2 week period. It's a battle to keep the appetite up if you are in pain or nauseated as well. And depending on tumor location, a person might feel full after only a few bites.

Go for high calorie foods for now - she will need to weight to fight this ugly Beast!
_________________
47 YOA female. NSCLC IV Squamous cell. dx 7/07. Radiation, chemo (carboplatin/Taxotere). Cancer free 3/08! Cancer mets to liver 12/08. Started Tarceva 1/26/09-4/10/09, liver tumor tripled in size. Started Alimta. Down to 84 pounds! Stopped Alimta and started Gemzar on 5/2. Stopped chemo went into HospiceJuly 24 2009, with prognosis of 3, maybe 4 months left.

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