How to handle the painstaking wait for MRI results?
My big sister(28years old) was diagnosed with a brain tumor (oligodendroglioma grade II)in November 2009. She underwent surgery in December 2009. She just had her follow-up MRI today and we’ll find out the results next week I guess. The surgeon believes he got all of the tumor or at least most of it out but there still is a small (or not that small I must admit) part of me that is scared out of my mind that what if they didn’t get all of it or even worse what if the tumor has already progressed. I mean, how is one supposed to live with this uncertainty? How do you cope with waiting for the MRI results? Does the waiting ever get any easier?
P.S. Also if anyone has any knowledge or insight of this type of tumor, any survival stories etc. I’d be more than happy to hear them!
Comments
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waiting for MRI results
I know there is a tendency to focus on the MRI results, but I cope with this disease a bit differently. Why worry about things you cannot control? I just take every day to live in the moment, and try not to think about what may or may not be happening in my head (i.e., regrowth of tumor).0 -
hello.
my husband (luke) was also diagnosed with a grade 2 oligoderdroglioma at age 28. he has his first surgery dec. 2008. it was very successful, and we were so grateful that the whole tumor was removed. because with these kinds of rare tumors, that is not usually possible. we were told that oligos can latch onto healthy tissue, and make it impossible to remove all without possibility of hurting the patient. if your doctor feels confident that he got the whole thing, that is wonderful news.
we did not have any treatment for luke's original tumor, and he healed very well after surgery. the mri waiting is hard, i know. and it's harder not to live mri to mri. waiting for answers. but it has been helpful to me to think that if luke is not having any symptoms, then everything is probably okay. (ie, headaches, vomiting, seizures.)
originally, our neurosurgeon told us there was a 20% chance of recurrence with oligo2. which meant there was an 80% chance that things would be okay for a good long while. we were happy with those odds, and i hope they help you a little.
as for the uncertainty and whether or not things get easier, we're still on the roller coaster ourselves here... but i can offer something that has been helpful to me. when your mind starts wandering and taking you to the darker places of the "what ifs", i put both feet on the floor, breathe from my gut and pull my mind back to the here and now. because we have plenty to worry about that is a reality for us right now. i try not to lose my head over things that have not happened. if they do, we'll see it when it gets here. you know?
luke has had another tumor removed in september 09. but the pathology came back as something different, and it grew in an entirely different area. it seems he has some sort of genetic issues that no one has seen before, and it really doesn't relate much to the typical oligodendroglioma. our experience last year was a survival story, i feel. until the new tumor, luke was back to work part time, and even played banaroo last summer with his band. i felt like he was going to be okay. if you would like to talk more about this, i am here at home with him, full time, while he is having treatments for his other tumor and do feel rather knowledgeable about his condition. send me an email anytime to tell me more about you and your sister.
my name is sydney.
also, our neurosurgeon told us something interesting about oligodendrogliomas. he said he sees them mostly in "left brained" people. my husband is an artist and musician. is your sister an artist of some sort? it was a strange statistic, we thought.0 -
noaloha,
Hello, my name is
noaloha,
Hello, my name is Andy and I have a rare form of brain cancer called "Pleomorphic Xanthoastrocytoma Grade 3". Every few months I go in for MRIs to make sure that there is no signs of it having recurred. I've found as time goes on the frequency of my MRIs gets farther in between that it does tend to be less stressful. However I am on edge from the time of my MRI until I hear the results, which seems to run about 2 business days. If you have any further questions I can answer for you please feel free to ask me. I'll answer any of them to the best of my ability.
-Andy0 -
the MRI resultsarkansasbrains said:hello.
my husband (luke) was also diagnosed with a grade 2 oligoderdroglioma at age 28. he has his first surgery dec. 2008. it was very successful, and we were so grateful that the whole tumor was removed. because with these kinds of rare tumors, that is not usually possible. we were told that oligos can latch onto healthy tissue, and make it impossible to remove all without possibility of hurting the patient. if your doctor feels confident that he got the whole thing, that is wonderful news.
we did not have any treatment for luke's original tumor, and he healed very well after surgery. the mri waiting is hard, i know. and it's harder not to live mri to mri. waiting for answers. but it has been helpful to me to think that if luke is not having any symptoms, then everything is probably okay. (ie, headaches, vomiting, seizures.)
originally, our neurosurgeon told us there was a 20% chance of recurrence with oligo2. which meant there was an 80% chance that things would be okay for a good long while. we were happy with those odds, and i hope they help you a little.
as for the uncertainty and whether or not things get easier, we're still on the roller coaster ourselves here... but i can offer something that has been helpful to me. when your mind starts wandering and taking you to the darker places of the "what ifs", i put both feet on the floor, breathe from my gut and pull my mind back to the here and now. because we have plenty to worry about that is a reality for us right now. i try not to lose my head over things that have not happened. if they do, we'll see it when it gets here. you know?
luke has had another tumor removed in september 09. but the pathology came back as something different, and it grew in an entirely different area. it seems he has some sort of genetic issues that no one has seen before, and it really doesn't relate much to the typical oligodendroglioma. our experience last year was a survival story, i feel. until the new tumor, luke was back to work part time, and even played banaroo last summer with his band. i felt like he was going to be okay. if you would like to talk more about this, i am here at home with him, full time, while he is having treatments for his other tumor and do feel rather knowledgeable about his condition. send me an email anytime to tell me more about you and your sister.
my name is sydney.
also, our neurosurgeon told us something interesting about oligodendrogliomas. he said he sees them mostly in "left brained" people. my husband is an artist and musician. is your sister an artist of some sort? it was a strange statistic, we thought.
Thank you so much for your encouraging words and support, it means the world to me!
My sis had an appointment with her surgeon today and we finally got the MRI results. And.. DRUM ROLL.. the MRI showed no sign of the tumor so she passed her first check-up with flying colours! Her next MRI isn’t ‘till September so it feels like a holiday now. My sister has really been a trooper the whole time and she recovered from her surgery really fast and got out of the hospital after just 5 days. Even before her surgery the only indication that something was not right were occasional twitches on her neck/head (later we found out they were small epileptic seizures). So, we’re really lucky that they even spotted the tumor and that she has no deficits.
Sydney, you asked if my sister was an artist and the answer is no. I’m the artist of the family and my sister works in social services. She has been back to work fulltime (about 40hours a week) for 2months now and she does get tired a bit more easily than before (but as the days go by she feels less and less tired) and she takes her anti-epilepsy medicine daily but all in all she is doing well. I feel so lucky things have gone this great so far.
You also mentioned that your husband was 28 years old at the time of his diagnosis and so was my sister. I’m so sorry to hear your husband has got another tumor and I sincerely hope that the treatments will work and he will get better. I think that the age factor will work wonders for him as well as my sister.
Thank you again for all of your support!
P.S. Sorry for my grammar I’m from Northern Europe so English isn’t my native language.0 -
HelloAndy30 said:noaloha,
Hello, my name is
noaloha,
Hello, my name is Andy and I have a rare form of brain cancer called "Pleomorphic Xanthoastrocytoma Grade 3". Every few months I go in for MRIs to make sure that there is no signs of it having recurred. I've found as time goes on the frequency of my MRIs gets farther in between that it does tend to be less stressful. However I am on edge from the time of my MRI until I hear the results, which seems to run about 2 business days. If you have any further questions I can answer for you please feel free to ask me. I'll answer any of them to the best of my ability.
-Andy
I hear you Andy and I believe that the days waiting for the MRI results will always be quite nerve wrecking. But I guess you learn how to look for signs of a tumor recurrence. I found it difficult waiting for the MRI results because I’m not the one who’s “sick” and I couldn’t ask my sister all the time how she was feeling and was everything ok. Also because her symptoms of the tumor were relatively minor I think monitoring the signs is more difficult. From now on I’ll try to remind myself that it is a good thing that we have regular check-ups so that if there is a recurrence they will catch it early.
Thank you for your thoughts! Hope you're doing well!0 -
Apprehension Goes With the Territory
noaloha,...
Sixty-six years old. Husband, father, grandfather. Diagnosed a year ago with a Gliobastoma multiforme (Grade IV),... surgery, radiation, 40 days of chemo, and now on a schedule of interval chemo -- five days, starting every 29th day. The treatment goal is not to cure, but to contain. We do an MRI every two months to see how we're doing.
Apprehension goes with the territory.
It helps me to be realistic. Being realistic is not the opposite of being optimistic, or pessimistic,... but the First Step either way. I've never done this before. Neither have you. That's okay. We are all of us new residents of Cancervivorville,... where every day's a treasure hunt.
And the only real disadvantage is a bad attitude.0 -
The Waiting is the Hardest Partnoaloha said:the MRI results
Thank you so much for your encouraging words and support, it means the world to me!
My sis had an appointment with her surgeon today and we finally got the MRI results. And.. DRUM ROLL.. the MRI showed no sign of the tumor so she passed her first check-up with flying colours! Her next MRI isn’t ‘till September so it feels like a holiday now. My sister has really been a trooper the whole time and she recovered from her surgery really fast and got out of the hospital after just 5 days. Even before her surgery the only indication that something was not right were occasional twitches on her neck/head (later we found out they were small epileptic seizures). So, we’re really lucky that they even spotted the tumor and that she has no deficits.
Sydney, you asked if my sister was an artist and the answer is no. I’m the artist of the family and my sister works in social services. She has been back to work fulltime (about 40hours a week) for 2months now and she does get tired a bit more easily than before (but as the days go by she feels less and less tired) and she takes her anti-epilepsy medicine daily but all in all she is doing well. I feel so lucky things have gone this great so far.
You also mentioned that your husband was 28 years old at the time of his diagnosis and so was my sister. I’m so sorry to hear your husband has got another tumor and I sincerely hope that the treatments will work and he will get better. I think that the age factor will work wonders for him as well as my sister.
Thank you again for all of your support!
P.S. Sorry for my grammar I’m from Northern Europe so English isn’t my native language.
Hi,
I am so glad your sister's MRI was clean. I know exactly how you feel. My son, then 13, was diagnosed with a brain tumor and had emergency surgery on June 12, 2004. This past year when he had is follow-up MRI was the first year I didn't have to spend in bed. I couldn't tolerate the wait. This June 12, 2010 will be his 6 year anniversary and he has remained cancer free. I wish the same for your sister.
Michael's story is very encouraging. I have just published a book called, "Michael's Journey" to inspire families like yours. You can visit our website at www.michaelsjourney.net to find out more about Michael and the book.
I wish you all the best!!
Sincerely, Laura (Michael's Mom)0 -
My waitShowMeFellow said:Apprehension Goes With the Territory
noaloha,...
Sixty-six years old. Husband, father, grandfather. Diagnosed a year ago with a Gliobastoma multiforme (Grade IV),... surgery, radiation, 40 days of chemo, and now on a schedule of interval chemo -- five days, starting every 29th day. The treatment goal is not to cure, but to contain. We do an MRI every two months to see how we're doing.
Apprehension goes with the territory.
It helps me to be realistic. Being realistic is not the opposite of being optimistic, or pessimistic,... but the First Step either way. I've never done this before. Neither have you. That's okay. We are all of us new residents of Cancervivorville,... where every day's a treasure hunt.
And the only real disadvantage is a bad attitude.
I'm always more nervous than my wife.
During the MRI, it's usually night at teh MAys Clinic at MD Anderson...I go over across the room to where the outpatient surgery waiting room is and I get a chair and look out at the night skyline from those large windows...she's usually in there a litle over an hour.
This year this young guy who maried my neice gave this ipod with "Alice in Chains" "Jar of Flies" on it.
Man, looking out at the night skyline of the University of Texas Medical facility from that giant window on the 4th floor of Mays Clinic listening to "Jar of Flies"...just relaxed me or ....sumpthin'
Afterwords at the motel, I do not sleep..my wife is sound asleep...My stomach hurts until the 9a.m. meeting with the oncologist.... who gives us this conclusion
FULL RESULT:
Examination: MRI of the Brain with and without Contrast Enhancement 03/02/2010
Clinical History: This is a 50-year-old female with left frontal glioblastoma multiforme. Status post resection.
Comparison: 01/05/2010.
Findings: Routine pre- and postcontrast multiplanar multiecho brain MRI scan was obtained.
Left frontal resection cavity remains stable. There is no new mass effect or contrast enhancement to suggest disease progression. However, there appears to be slight progression of FLAIR hyperintensity in the posterior aspect of the resection cavity. It should be closely monitored. It could reflect response to the diffusion abnormality seen in the posterior margin of the resection cavity in the September 2009 study.
The ventricle size is normal, without midline shift. No diffusion abnormality is present. The vascular flow voids are maintained.
There is interval development of opacification of ethmoid air cells and air fluid level is present in the left maxillary sinus. Please correlate with symptoms of sinusitis.
IMPRESSION:
1. Mild progression of FLAIR hyperintensity in the posterior margin of the resection cavity. However, there is no mass effect or contrast enhancement to suggest disease progression.
2. Imaging findings consistent with sinusitis.0 -
Yeah!noaloha said:the MRI results
Thank you so much for your encouraging words and support, it means the world to me!
My sis had an appointment with her surgeon today and we finally got the MRI results. And.. DRUM ROLL.. the MRI showed no sign of the tumor so she passed her first check-up with flying colours! Her next MRI isn’t ‘till September so it feels like a holiday now. My sister has really been a trooper the whole time and she recovered from her surgery really fast and got out of the hospital after just 5 days. Even before her surgery the only indication that something was not right were occasional twitches on her neck/head (later we found out they were small epileptic seizures). So, we’re really lucky that they even spotted the tumor and that she has no deficits.
Sydney, you asked if my sister was an artist and the answer is no. I’m the artist of the family and my sister works in social services. She has been back to work fulltime (about 40hours a week) for 2months now and she does get tired a bit more easily than before (but as the days go by she feels less and less tired) and she takes her anti-epilepsy medicine daily but all in all she is doing well. I feel so lucky things have gone this great so far.
You also mentioned that your husband was 28 years old at the time of his diagnosis and so was my sister. I’m so sorry to hear your husband has got another tumor and I sincerely hope that the treatments will work and he will get better. I think that the age factor will work wonders for him as well as my sister.
Thank you again for all of your support!
P.S. Sorry for my grammar I’m from Northern Europe so English isn’t my native language.
Yeah for no tumor!!
To address what's been expressed, my husband had his first brain tumor at age 20. They watched for a while, had radiation/chemo (inoperable). That tumor was completely gone after 2 months of chemo. They continued with more chemo and radiation. That was 1987. I met him in 1992. He lived very healthy and happily all those years, and I not once lost sleep thinking he'd ever have brain cancer again. I lost sleep over being unable to conceive due to the effects of chemo on his body, but that's another story.
Fast forward to August 2009 and our whole world changed. Symptoms presented themselves which indicated new brain cancer - AAs...tumors induced by the radiation he had 23 years ago. Who would have "thunk" it?! So, what do we do? Find a doctor willing to give him more radiation -- that and chemo are his best chance for a cure, (again inoperable tumor(s). Seven plus months later, he is on monthly Temodar, back to work full-time in January, fishing and living each day at a time with as much gusto as possible.
You just have to keep worry at bay with this, or you (me) will lose your (my) mind.
He is SUCH an example of strength, faith and inspiration that it would be MOST unfair to let the "what ifs" drag me to the depths of dispair.
Loving hearing good news on here of clean MRIs. We have our next on April 22nd at Duke. So far we've had shrinkage each MRI (three tumors) or stability. We keep praying for that 2nd miracle, but we feel so blessed that hubby is capable of doing nearly anything right now. 0 -
MRI results = Wait
Early next week I'll be doing the same thing, once again, for a follow up. You just have to wait and see. No options. I, as many others going through this, or similar, waiting game know this one. As I "joke" with my primary physician -every couple of months - we'll go through this again, hope for the best, and see what happens. Maybe we'll have to adjust my medications, or...maybe we won't have to 'worry' about it. It's, painfully, that simple.0 -
Waiting definitely is tough, here's what I've foundraly75 said:MRI results = Wait
Early next week I'll be doing the same thing, once again, for a follow up. You just have to wait and see. No options. I, as many others going through this, or similar, waiting game know this one. As I "joke" with my primary physician -every couple of months - we'll go through this again, hope for the best, and see what happens. Maybe we'll have to adjust my medications, or...maybe we won't have to 'worry' about it. It's, painfully, that simple.
I had a GBM in 2007, and it came back in January of this year, I had seizures. The last three months have been a wild ride for me, and really up in the air. I got a P.E.T. scan after my first MRI and CT scan, and it was negative. Then I got another MRI a few weeks later, and it was obvious that the P.E.T. results, saying I didn't have cancer, were a false positive. I had surgery a few weeks ago.
I found that the only way I can get through this is by trusting in God, and hopefully finding a peace through Him and His promises: I used to read the bible before MRIs and such. Also, you have to do all the research so you understand EVERYTHING about cancer and specifically, your type of brain cancer.0 -
How to handle the painstaking wait for MRI results?
Hi Aloha,
I know how that anxiety goes...I can't believe you have to wait that long for the results. Youch! Depending on how the progress between MRIs goes, it may get easier. I was on annual scans when they found my second recurrence (I had 2 brain surgeries before so this was the 3rd time). I hadn't worried much for a while up until that point.
What I can tell you is that an oligodendroglioma is easier to eradicate than other tumor types - that's the good news. Mine was a mixed glioma, and after my second surgery they found what remained was anaplastic astrocytoma - the oligodendroglioma component had disappeared. That was very telling to me.
If you'd like feel free to e-mail me privately. I am presently starting to write a book about my 15 years as a survivor of a grade III oligoastrocytoma. 54 MRIs and a PET scan later...I would be glad to help you if I can. Keeping you in my thoughts and prayers.
And make sure you celebrate with every improved/stable MRI...those are the victories I took along the way...
Johanna0 -
Artistic Statisticarkansasbrains said:hello.
my husband (luke) was also diagnosed with a grade 2 oligoderdroglioma at age 28. he has his first surgery dec. 2008. it was very successful, and we were so grateful that the whole tumor was removed. because with these kinds of rare tumors, that is not usually possible. we were told that oligos can latch onto healthy tissue, and make it impossible to remove all without possibility of hurting the patient. if your doctor feels confident that he got the whole thing, that is wonderful news.
we did not have any treatment for luke's original tumor, and he healed very well after surgery. the mri waiting is hard, i know. and it's harder not to live mri to mri. waiting for answers. but it has been helpful to me to think that if luke is not having any symptoms, then everything is probably okay. (ie, headaches, vomiting, seizures.)
originally, our neurosurgeon told us there was a 20% chance of recurrence with oligo2. which meant there was an 80% chance that things would be okay for a good long while. we were happy with those odds, and i hope they help you a little.
as for the uncertainty and whether or not things get easier, we're still on the roller coaster ourselves here... but i can offer something that has been helpful to me. when your mind starts wandering and taking you to the darker places of the "what ifs", i put both feet on the floor, breathe from my gut and pull my mind back to the here and now. because we have plenty to worry about that is a reality for us right now. i try not to lose my head over things that have not happened. if they do, we'll see it when it gets here. you know?
luke has had another tumor removed in september 09. but the pathology came back as something different, and it grew in an entirely different area. it seems he has some sort of genetic issues that no one has seen before, and it really doesn't relate much to the typical oligodendroglioma. our experience last year was a survival story, i feel. until the new tumor, luke was back to work part time, and even played banaroo last summer with his band. i felt like he was going to be okay. if you would like to talk more about this, i am here at home with him, full time, while he is having treatments for his other tumor and do feel rather knowledgeable about his condition. send me an email anytime to tell me more about you and your sister.
my name is sydney.
also, our neurosurgeon told us something interesting about oligodendrogliomas. he said he sees them mostly in "left brained" people. my husband is an artist and musician. is your sister an artist of some sort? it was a strange statistic, we thought.
Hi,
Thought the statistic was interesting, as my son is artistic, 36yrs. old, and was diagnosed in 2006, with an Olig. Grade "2-ish". Surgery was done, and to be repeated now, 5 yrs. later, as tissue is creeping toward Motor Cortex. They're also going to follow with radiation... The Dr. at diagnosis, told us that John probably had the tumor,(for 7 - 9 yrs. Wow! No headaches, dx. from Grand Mal, in 06.)
Hang in there - it is a roller coaster ride for sure!
You're both in our prayers, and hope with all the advancements in technology, and medicine, they'll come up with some miracle irradiater soon for all!!
Catherine0
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