Was diagnosed with stage 2b nsclc in 07Had a full left lung removal in dec 07.all was clear until recently. i now unfortunatley had brain tumour removed welll luckily really, they could operate.I was in the last part of my pregnancy and was gettting severe headaches, i then just started being sick and couldnt keep anything down.my partner took me to the labour ward and the follwing day they took an mri that showed a tumour.I was transferred to a different hospital where the next day i had a beautifull daughter by c-section,then a few days later a brain tumour removed......i am now at home recovering but they want to do wbrt i am a bit worried about this as have allready had chemo.can anyone tell me what to expect? i decided against wbr i just wanted to be at home with baby,and had read so much stories and it was a big decision to not have it.wel from what i know the outloook isnt bright are there many survivors who have had mets to the brain.?
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Any brain met survivors?whats gona happen next!!
- By lassymac
- Posted October 29, 2009 at 5:48 pm · 20 replies
- In Non-small cell lung cancer - General
- Shared with the public
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Exercise Cancer Surgery Radiation therapy Decadron Pregnancy Seizures Weakness Pain Memory Lung cancer Paralysis Stress
20 replies
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- By owesly
- Posted October 29, 2009 at 6:07 pm
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Dear Lassymac, your story is very touching. As one friend to another, I would wholeheartedly suggest that you follow your doctor(s) advice and that you have the WBRT. The fact that you were even ABLE to have the brain surgery to remove the lung cancer that had spread to the brain was a blessing in and of itself (most people who have lung cancer go to the brain are not able to have brain surgery to remove the cancer that has spread to the brain because the cancer has often spread too much in the brain by the time they find it in the brain in order to permit surgery to be done to the brain), but if you do not take the WBRT after the surgery in order to "mop up" any " cancer seeds" that may be left in the brain after the brain surgery, you will have wasted a really good opportunity to hopefully never have this cancer come back again or at least keep it away for a long, long time. I wish you the best.
- By drawing3d
- Posted October 29, 2009 at 8:07 pm
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Lassymac,
I am a survivor and whole heartedly agree with you about not getting wbr unless you have starfield up there. :)
Now days there are too many viable options, like gamma knife. Once you have WBR, you really have no options left.
I had a large (1.7 cm) tumor removed in a "dangerous" area, one year after "one-shot" radiation to the brain tumor. The radiation killed the tumor and when I had the cranitotomy one year later, they found it to be dead.
Everything we do is a gamble, of course... yes it COULD come back, yes surgery COULD make the tumor seed... but then again, maybe not. If you do have tumor(s) they may be able to do the gamma knife or surgery again before wbr.
By the way, I am completely NED, live a fantastic life, have no pain, on no medicine... am going on 2 years.
I would pray and ask Jesus to help you in making this decision. He is still in the healing business!
God bless you and your beautiful baby girl,
Ellen
- By D1
- Posted October 29, 2009 at 8:44 pm
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First, I like Ellen's post. Second, my friend, George, who left this bd. in anger, used to post here...he's a Stage IV Survivor. He has a brain met. back in 1998; he's been NED ever since. He had gamma knife NOT whole brain rad. I think gamma knife is better. But, I pray for you whatever you choose.
- By owesly
- Posted October 29, 2009 at 9:45 pm
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Maybe it may help if I give a bit of a clarification. Gamma knife is a wonderful thing, but it only treats a single tiny spot. If someone has had brain surgery already to remove a tumor in the brain, the tumor is now removed. There is no more spot left to treat. Gamma knife cannot treat the whole area where the tumor was. It just does not cover so much area. Its only good for tiny spots. The whole idea behind whole brain radiation therapy is to treat the whole brain in an effort to keep the cancer from coming back anywhere else in the brain. Gamma knife, as in D1's friend can be used INSTEAD of surgery successfully sometimes. I suspect very much, however, that that "one shot" that Ellen had was a "shot" of whole brain radiation therapy, not gamma knife. I hope this helps, but the truth is that the best thing for lassymac to do is to sit down with her oncologist and explain her fears and concerns so she can reach a decision that she is comfortable with.
- By -T-
- Posted October 29, 2009 at 10:37 pm
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the tumor removed by brain surgery? not always the case. it was explained to me that some tumors are like a tree, you can remove the tree and some of the roots but you will never get all the roots because they are too small to see. in may 09 my husband had a craniotomy followed by 15 wbr sessions, it has started growing back and tomorrow will have gamma knife. the reason he had wbr is because he had 3 or 4 spots in addition to the large one. the little ones can no longer be seen. as for the condition he is in... he is weak, can no longer stand, or shift himself in his recliner. he wears a diaper because he cant make it to the potty. the only way to get him around is with help from my son. he lifts and pivots his father from bed to wheelchair to recliner and back again as needed. to get him to the dr or for treatment my son has to take time off his job or school. his memory is faulty, he gets confused. he gets confused and agitated with the tv remote, pushing the wrong buttons and saying it's broken. i am hoping the gamma knife will relieve some of the pressure on his brain and at least allow him to stand again, is walking too much to hope for? i wonder why DR owesly has joined the board? is because he or a loved one has cancer? or is it to push his beliefs of medical treatment. i have had drs telling me my husband is end stage... pushing that at me. he probably is end stage but how long that stage will last is not up to the dr, it is up to God and only He will decide when to call him home. i've learned a bit from this board, if you dont like what the dr has to say, if they arent willing to fight for you find one who will. miracles happen everyday. t
- By -T-
- Posted October 29, 2009 at 10:56 pm
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if i sounded grumpy and defensively offensive i apologize. it has been a long day and will be a short night. i have to be up at 2:30 am to get my husband ready for another 100 mile trip to the hospital for gamma. we went for a pre gamma exam today. it's been hard and i suppect things will get more difficult before or if they get better. i know most folks are only trying to help and i apologize if i offended anyone i was just venting. again i'm sorry, t
- By Beenthere
- Posted October 29, 2009 at 11:47 pm
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Oh so this is Dr. whoever. They do not have the answers. They make the answers up instead of simply saying, I or we do not know. He seems as rude as the foreign doc who took it upon herself to rudely call me on a Friday afternoon and say "you have lung cancer."
End of story and start of story. I don't think they should be allowed to answer here. God they are not!
- By drawing3d
- Posted October 30, 2009 at 8:19 am
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You know, as much as I hate to say it, it IS kind of suspicious when doctors just "pop" in and are so opinionated.
I did NOT have whole brain radiation for my one-shot dose and cannot believe that anyone would think that i am so stupid that I would not know the difference... in treatment, in type, etc.
I had Linear Accelerated Linac Stereotatic Radiation.
It is so much easier to just say "one-shot". I refused wbr when they offered it to me.
The Linac radiation is very similar to gamma knife; the difference being (from what I have been told) the patient revolves around the beam in one, the beam revolves around the patient in the other - although I am sure there is much more to it.
You absolutely CAN have more than one tumor treated at one time but to my knowledge, there is a size constraint. My own tumor was the size of a healthy radish :)
WBR is a financial boost (just like any other procedure) to the facility or doctor... be very careful about your decision here, and get other MEDICAL opinions before making this decision!!!!!!!! Things in THIS country have changed much in the past few years in the wbr arena and even the larger institutions are not suggesting wbr for NSCLC as quickly as they used to because of the potential downsides... mainly they don't know the long term repercussions of it (for the sad, obvious reasons) nor do they like the short term either when there are other avenues available.
God bless us all,
Ellen
- By drawing3d
- Posted October 30, 2009 at 8:30 am
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Dear T,
I read your bio and I wanted to say I am so sorry your husband (and you and your son) are having such a hard time.
They gave me steroids after my craniotomy and I suspect your husband is on those too?
Steroids are a beast. They can cause EXTREME weakness and difficulty getting around after a few weeks. The only thing that helped me was COQ10 and the resolve to move around, evwn if that means doing arm twirls in a chair until the COQ10 gets the legs stronger. (COQ10 helps your cells rebuild energy)
The wbr causes much short term damage too, but the steoids really compound the problems of mobility and other issues -
If you want to talk in "private", just send me a friend request...
God bless,
Ellen
- By cards7up
- Posted October 30, 2009 at 12:27 pm
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Lassymac, you are going to get opinions of all kinds here. There are those that have had WBR with success and those that refuse it because of side effects. I do agree with the doctor, sit down with your onc and question and state your fears and concerns. I do believe they don't have data on long term effects of WBR, not that I could find. Another thing you can try is posting your questions on cancergrace.org and let the specialists help you out. It is a very personal decision and as you see here, not everyone agrees to have it done, while others do. Good luck and take care, JC
- By staceym
- Posted October 30, 2009 at 2:19 pm
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Lassymac - Congratulations on your baby but I am so sorry you are going thru this right now. My husband had his rt lung removed in 2006 and 2008 had a craniotomy to remove small tumor - dr said it was so small they suggested just removing it rather then gamma knife. He did 15 treatments of focal radiation. Honestly, surgeon left it up to radiation onc for the radiation but he said it is a choice really as the margins were clean and there were no other tumors. I question whether we did the right thing for the radiation for the long haul but my husband went along with dr. I just have to comment gamma knife and radiation are not really on the same page - gamma is used to remove a tumor (non invasively) think of it as a cyber knife. I think everyting depends on a case by case basis re: the decision to do radiation - you should speak to the oncologist and surgeon about their opinion.
Take care,
Stacey
- By drawing3d
- Posted October 30, 2009 at 10:47 pm
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Oh my...
Gamma knife IS radiation, just very targeted, very precise, very accurate.
The gamma knife "blades" are intense doses, beams, of gamma radiation programmed to target the tumor at the exact point by intersection.
It is radiation, NOT cutting, even though it is refered to as Gamma "Knife"... that is just in reference to it's accuracy.
- By -T-
- Posted October 30, 2009 at 11:43 pm
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the difference in the two types of radiation could be described like you would for phasers from star trek. the old original star trek, lol. phaser on wide beam would be wbr. on a narrow beam, pin point, is gamma knife. same phaser but different target and or intensity. t
- By drawing3d
- Posted October 31, 2009 at 6:23 am
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Yes, you are so correct and that's one of the reasons it is so great when we need "the big guns".
I had proton to the chest... same basic theory in that it is radiation but much more precise than even the coveted IMRT... (I think Tomo is alot like proton?).
Radiation has come a long way... just wish it wasn't, well, radiation :)
- By 281Dianne
- Posted November 1, 2009 at 4:15 am
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WHAT ARE THE SYMPTONS OF BRAIN CANCER, I HAVE BEEN HAVING PAINS IN THE BACK AND SIDE OF MY NECK GOING UP TO THE BACK OF MY HEAD. LASTING ABOUT 15 TO 30 MINTUES.
- By staceym
- Posted November 1, 2009 at 9:06 am
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drawing3d,
You're right it is radiation and I see it did not come across as such in my response...it is just not the typical radiation that people think - thanks for clarifying for lassymac.
- By drawing3d
- Posted November 1, 2009 at 10:33 am
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281Dianne,
You need an MRI of the brain and PET/CT to positively know. Many people do not have symptoms (I was one of those), and some folks have all kinds of symptoms commonly associated with tumors in the brain, and do not have cancer spread there. You cannot go by symptoms to say one way or the other.
Insist on the diagnostic tests and do not take no for an answer. Leave your oncologist group if necessary. Remember, it is YOUR life. Fight for it and be an informed patient. You will live a longer, healthier life.
God bless,
Ellen
- By cheryl76
- Posted November 1, 2009 at 10:48 am
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I had wbr right after my diagnosis and a MRI. I had numerous, I couldn't count them small tumors, and and a large one at the base of my brain. It all happened so fast, and they where speaking of paralysis and seizures, that I said go ahead. I haven't had any side effects yet, I'm almost a year out. I had a head CAT scan for another issue and they didn't see any tumors. Maybe I'm just lucky, but it certainly helped me!
- By -T-
- Posted November 1, 2009 at 12:58 pm
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thank you Ellen, yes he has been on and off dex because of the regrowth he was put back on dex and since he had the gamma oct 30 he will be on it at least another month tapering slowly down hoping to avoid side effect lol. what new side effect we could have baffles me. his mind is not clear, (some drs have tried to tell me that is from wbr but i thought it was much too soon for that, maybe in a few years... his radiation onc said it was probably from the regrowth causing swelling) he cant walk, he is just like a ragdoll. he thinks the supplements i have tried to give him only make him feel worse. he sits and does not try to exercise and when i remind him that he needs to move some he is not a happy camper. the hoyer lift comes tuesday. t
- By drawing3d
- Posted November 1, 2009 at 3:25 pm
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Maybe getting him out of the house, even if it's down the sidewalk in your neighborhood, for some fresh air when your lift comes in, in a wheelchair, will help with his attitude?
Like we have discussed, you can't force health on him... sounds like he is both angry and sad. It's so hard to feel like a valuable piece of society one day, then have the "future" taken from you the next.
The wbr does cause swelling of the brain and that can cause a whole host of problems... but then so does decadron. It seems it is a necessary evil unfortunately. COQ10 can take a couple of weeks to kick in.
Please watch your own health. Caregivers sometimes do not outlive the loved ones they are caring for due to stress...
God bless you!
Ellen
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