Unfortunately: brain mets!
So, here is the good news!
1. I got the results about 1 minute after my MRI finished! (my oncologist is a star - with good connections in the radiology dept!).
2. I had meetings with my onc and a neurosurgeon within 10 hrs of the MRI - with a preliminary plan aready in place
3. they are both so confidence-inspiring and saying some very positive things: treatable, positive prognosis (for the brain mets, that is) and referring to me as a long-term survivor (as in, we want to give a lower dosage of radiation over a longer period of time so as to reduce possible long-term radiation damage, since you are going to be a LONG TERM SURVIVOR).
I have 4 lesions -- all small. The treatment options being battered around were surgery, whole-brain radiation and stereotactic radiation (targeted radiation, kinda like Cyberknife altho in my case it will be X-Knife). In the end, they decided on WBR first followed by stereotactic (no surgery -- lesions too small?)
The 4th bit of good news is that I got to go home from the hospital today (yea!) will get to go to the airport to meet my 'baby' (19 years old!) tomorrow, and will have a treatment-free Christmas -- I start the radiation on the 28th. Yea!
Meanwhile, I am on anti-epilepsy drugs (preventative - I didn't have a seizure) and steroids. Can't drink alcohol and advised not to drive a car. All that is OK. I'm not noticing side effects from the drugs - at least not yet.
I don't think too many people on this board have had brain mets so pardon me if I share some of the information I've learned over the past 55 (!!) hours. (Please just skip if you don't want to hear this stuff):
In people like me -- long term survivors of CRC who are still living with the disease, oncologist are, unfortunately, seeing brain mets more and more. Partly because we are living longer (yea!) also because chemos can't cross the blood/brain barrier (I think I've got that terminology right).
In my case, simply telling my doctor I had a severe headache (and I mean severe -- I thought I might be having an aneuryism at first) pretty much got me into hospital. I did have vomiting and lost bladder control as a result of the headache pain. That day (Saturday) I just slept. The next day I still had the headache, which is when I called him. I had no other neurological signs -- no dizziness, weakness, clumsiness, seizure.
Gee I sure hope no-one ever ever needs further information on brain mets! But, if you ever do, I'm your gal!
I'm OK. It's been an emotional rollercoaster. Brain mets sounds very scary. But, hell, so does 'cancer' and 'recurrence' and lung met and bone mets and all those other words I have heard-- and I'm still going strong! I have been in the capable hands of a great oncologist for 9 years now -- and now seem to be in the awesome hands of a highly experience neurosurgeon, too.
The timing is lousy -- I think we all feel bittersweet this time of year (it's around the anniversary of diagnosis, too). But when is it ever good? I am thankful to be celebrating another Christmas -- I outlived my original prognosis years and years ago -- it's all icing now!
Love
Tara
Comments
-
Wow, you seem to have aPhillieG said:LTS
Nice letters to hear. I'm glad they have a plan Tara. You ARE a survivor, I have no doubt you will do great overcoming this hurdle.
{{{hugs}}}
-phil
Wow, you seem to have a really good handle on this, and your doctors are jumping right in and getting on these mets right away. So, good to see they have an immediate plan in place to get rid of these. Wishing you all the best.0 -
Tara you are a real survivor and you are going to beatplh4gail said:Tara, I wish you the very
Tara, I wish you the very best Christmas ever with your family! I'm so glad you went to the hospital and have a plan in place so quickly. Please keep up posted if you feel up to it.
plh4gail
those estupids Mets! .
Praying for you Tara!0 -
You've Had my Attention for Quite Some Time...
Tara
I'm going to be one that tells you that I'm HIGHLY worried and concerned for you. Yeah, all of the other stuff is scary - but when we're talking about mets to the brain, it doesn't get any scarier than that.
And for all of the obvious reasons....
What intrigues me is how your doctors are approaching your situation with a good prognosis expected. That's great! Perhaps, catching them very small is the key here. There's not alot of wiggle room 'upstairs' and our cancer grows bigger and more quickly than some primary brain tumors. I talked to a primary who had been living with it 9-years.
Your doctor's approach contrasts much differently than that of my onc. We recently discussed mCRC mets to the brain. His opinion was that they were not curable and not really treatable. I appreciated his candor in this discussion. As always, this was just his professional opinion.
I have only had the 3 folks here who had mCRC to the brain here for a reference. 2 of 3 chose to fight it with surgery only and the other surgery/radiation. The other person elected not to fight and took a last vacation and spent time with her family.
None of these cases had a favorable outcome, which was why I am so concerned that this will someday happen to me. Like you, I'm a long-term survivor and fighter for 7.5 years and have had the cancer progress to the liver and to the lungs, although we got clear. The next stop that cancer could stop at would be in my brain.
2 things concern me - not so much on what my prognosis would be, but what would surgery and radiation DO to the 'real me.' I mean, what would be left? I love to write and love to write here and if I lost that ability to communicate with you, that would be a living death to me. One of the questions, I'm asking myself, is what would I do if I were in your situation?
You're right, that as of this moment, you are the sole brain met case on the board. I saw what has happened before, but I'm so hoping that you will do well and all will happen according to the doctor's prognosis.
I'm worried and scared to death for you, Tara. I've just never been one to lie. I know you are a bubbly person and always project a strong image. But, I sense that there is some underlying fear and apprehension on what will happen next. You're a tough gal and one he11 of a fighter!
Your courage and tenacity are unrivaled. I'm not so sure I could do what you are doing, but in the book, I spent many pages analyzing this scenario and how I would handle it. As always, one doesn't know until they get to the "fork in the road." Then, you make the best decision that one can make and then we deal with it for the rest of our lives.
That's all that any of us can do.
I think this board benefits greatly from you telling your story. I have tried to tell mine and show all stops in the journey. I've always been proud to be a member of the long-term fighting group and I think our experiences are extremely relevant to how the fight can get - especially when we 'outlive' the original diagnosis.
I'm inspired by your fortitude and humbled by your strength. May you blaze the newest trail that I hope to not have to walk down - but I know that if I do, that there was a bright light named Tara, who helped show me the way:)
Love/Craig0 -
Plan
Glad they have a plan for you and it sounds like they are very otptomistic which is great. You have such a positive outlook, keep it up. Wishing you a very Merry Christmas.
Kim0 -
appreciate itSundanceh said:You've Had my Attention for Quite Some Time...
Tara
I'm going to be one that tells you that I'm HIGHLY worried and concerned for you. Yeah, all of the other stuff is scary - but when we're talking about mets to the brain, it doesn't get any scarier than that.
And for all of the obvious reasons....
What intrigues me is how your doctors are approaching your situation with a good prognosis expected. That's great! Perhaps, catching them very small is the key here. There's not alot of wiggle room 'upstairs' and our cancer grows bigger and more quickly than some primary brain tumors. I talked to a primary who had been living with it 9-years.
Your doctor's approach contrasts much differently than that of my onc. We recently discussed mCRC mets to the brain. His opinion was that they were not curable and not really treatable. I appreciated his candor in this discussion. As always, this was just his professional opinion.
I have only had the 3 folks here who had mCRC to the brain here for a reference. 2 of 3 chose to fight it with surgery only and the other surgery/radiation. The other person elected not to fight and took a last vacation and spent time with her family.
None of these cases had a favorable outcome, which was why I am so concerned that this will someday happen to me. Like you, I'm a long-term survivor and fighter for 7.5 years and have had the cancer progress to the liver and to the lungs, although we got clear. The next stop that cancer could stop at would be in my brain.
2 things concern me - not so much on what my prognosis would be, but what would surgery and radiation DO to the 'real me.' I mean, what would be left? I love to write and love to write here and if I lost that ability to communicate with you, that would be a living death to me. One of the questions, I'm asking myself, is what would I do if I were in your situation?
You're right, that as of this moment, you are the sole brain met case on the board. I saw what has happened before, but I'm so hoping that you will do well and all will happen according to the doctor's prognosis.
I'm worried and scared to death for you, Tara. I've just never been one to lie. I know you are a bubbly person and always project a strong image. But, I sense that there is some underlying fear and apprehension on what will happen next. You're a tough gal and one he11 of a fighter!
Your courage and tenacity are unrivaled. I'm not so sure I could do what you are doing, but in the book, I spent many pages analyzing this scenario and how I would handle it. As always, one doesn't know until they get to the "fork in the road." Then, you make the best decision that one can make and then we deal with it for the rest of our lives.
That's all that any of us can do.
I think this board benefits greatly from you telling your story. I have tried to tell mine and show all stops in the journey. I've always been proud to be a member of the long-term fighting group and I think our experiences are extremely relevant to how the fight can get - especially when we 'outlive' the original diagnosis.
I'm inspired by your fortitude and humbled by your strength. May you blaze the newest trail that I hope to not have to walk down - but I know that if I do, that there was a bright light named Tara, who helped show me the way:)
Love/Craig
I certainly appreciate your concern, Craig -- and of course everyone's situation is different. My oncologist told me he has one patient diagnosed with brain mets in 2004 and one in 2008 - both still going strong today and at least one working full-time. These are just a couple of anecdotal stories, but inspirational nevertheless.
Of course, one has be concerned about possible side effects (let's be frank, brain damage) after either surgery or radiation. As it happens, I know a *little* neurology (teach it to speech-language pathologists) so I had a rather long and specific list of questions! (especially relating to speech/language, cognitive function). Are there risks? of course. is there 100% guarantee of no damage? Of course not. But, I don't think it has to be a very gloomy scenario. Depends exactly where the lesions are, how large they are, and how close to other parts of the brain. I felt my doctors were being very straight with me. Am I scared? You betcha!! Am I ready to throw the towel in. Not yet. There may come a time, but I don't think this is it, for me.
I really appreciate all the loving support and warm words you shared with me. May we all continue to inspire and support each other.
Tara0 -
What news to
What news to receive.............
Thank you for articulate post....I can only hope that if I'm ever in your position, I will rally like you.
Words are escaping me as right now I feel for you.
Thinking of you...enjoy your holiday with gusto and an open heart.
..........0 -
plan of actionlauragb said:Sorry your instincts were
Sorry your instincts were right. But it sounds like things will happen quickly and you
caught the mets early. Keep surviving!
Enjoy your treatment free Christmas.
Sending Light.
Laura
Hi Tara. Thank goodness you had a headache. With those creatures being that small, I'm sort of surprised you did have one.
Well, no matter what, they are small. My friend had gamma knife because of an AV malformation, though not cancer, it was not exactly small. She did well, she's back to driving, and being her same chatty, VERY witty self.
I know it's scary, but with your occupational background, you are well-informed and have very good doctors, sounds like.
Have a wonderful Christmas.0 -
Been holding you in my heart, Tara
and still am. So sorry that your instincts were correct, and so glad that your docs, and you, have a good plan to follow with those lovely words "long time survivor". Thank you so much for your informative post. None of us want to entertain brain mets, but it's always in the back of (my) minds anyway who live with mCRC,... and with a recurrence, especially. I'm honored to keep you company on your path right now.
Your right about the timing, being the introspective time of year, (no wonder about Hanukka and the festival of lights...happy Hanukkha!), and, no, anything cancer never has good timing. Enjoy your holidays, dear one!
all the best, Leslie0 -
Oh Tara:
This is certainly not the news I wanted to log on and read. I have nothing to offer except well wishes and prayer that you have a positive outcome. The timing really sucks but is there ever a good time to hear this stuff. While we have no experience with brain mets we sure do know the "kick in the gut feeling" when the cancer rears its ugly head. Well, take one step at a time. I can't offer anything other than what Craig said. If you feel up to it please keep us advised as to how things are going for you.
Love and hugs - Tina0 -
Taralesvanb said:Been holding you in my heart, Tara
and still am. So sorry that your instincts were correct, and so glad that your docs, and you, have a good plan to follow with those lovely words "long time survivor". Thank you so much for your informative post. None of us want to entertain brain mets, but it's always in the back of (my) minds anyway who live with mCRC,... and with a recurrence, especially. I'm honored to keep you company on your path right now.
Your right about the timing, being the introspective time of year, (no wonder about Hanukka and the festival of lights...happy Hanukkha!), and, no, anything cancer never has good timing. Enjoy your holidays, dear one!
all the best, Leslie
Your wonderful attitude and that of your doctors is AMAZING. You will continue to be a Long Term Survivor in their capable hands. I'm hoping you have a wonderful holiday. Then, when the time comes, you can get back into the battle and kick this formidable enemy's butt AGAIN. Please keep us updated when you can.
Luv,
Wolfen0 -
Tarageotina said:Oh Tara:
This is certainly not the news I wanted to log on and read. I have nothing to offer except well wishes and prayer that you have a positive outcome. The timing really sucks but is there ever a good time to hear this stuff. While we have no experience with brain mets we sure do know the "kick in the gut feeling" when the cancer rears its ugly head. Well, take one step at a time. I can't offer anything other than what Craig said. If you feel up to it please keep us advised as to how things are going for you.
Love and hugs - Tina
like everyone this really is not the news I wanted to hear. You are indeed a shining example of strength and tenacity.
The sound of brain mets scares the shite right out of me but do you know....I think 5 years ago liver mets were the scariest thing you could say and now we are here and now we are marchin on.
YOu are on the cutting edge there girl.....oooops bad pun not intended....someone has to lead the way.
as we oldsters go forward I suspect we may face the same. Tara from the bottom of my heart i thank you for sharing with us and being honest with us ....and brave....
Give your girl a great big hug
my girl comes home tomorrow and I will share your story
very best love....maggie0 -
Brain mets
Thanks for the information. I have always thought the progression for CRC was Colon...Liver...Lung...Brain. I have been 3/4 through and appreciate the information so that if and when I am a little bit prepared.
Most encouraging are you comments about survivability. I had thought if it makes it to the brain I would be a goner in short order. Nice to have this dispelled for the moment.
Best of luck and Merry Christmas. I too will begin chemo again after Christmas...you are not alone!
Mike0 -
different ordermenright said:Brain mets
Thanks for the information. I have always thought the progression for CRC was Colon...Liver...Lung...Brain. I have been 3/4 through and appreciate the information so that if and when I am a little bit prepared.
Most encouraging are you comments about survivability. I had thought if it makes it to the brain I would be a goner in short order. Nice to have this dispelled for the moment.
Best of luck and Merry Christmas. I too will begin chemo again after Christmas...you are not alone!
Mike
Hi Mike,
My order was a little different: rectal, liver, bone, brain (I guess rectal often skips liver and goes to lung first). But don't follow my path! Stop sooner!
Let's hang in there together. Meanwhile, happy holidays -- let's squeeze all the joy we can out of these wonderful season.
Tara0 -
brain mets
Hi Tara,
I'm so sorry to hear about the brain mets, but glad that you have a plan. I'm really happy that you get to celebrate Christmas with your family. I understand fully what you mean by it being icing on the cake. After 7 years I feel the same way. Tonight is the 1st night of Chanukah and I am very happy to be celebrating with family and friends this year. I have a new granddaughter born Dec. 16th which makes the holidays even more special.
I wish you a Merry Christmas and a Happy New Year! I am sending positive vibes your way and hope that your treatment goes well. Please keep us posted on your progress. I have followed you on the board and you have always had a wonderful positive attitude and been an inspiration to me.
Take care,
Jamie0 -
Tara
Tara,
So sorry to hear the news. You are obviously one strong and amazing lady. Your docs sound great and I am so glad to hear they have a plan.
My prayers are with you.
Aloha,
Kathleen0
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