Brain Mets and Ovarian Cancer
First the background:
I've researched the percentage of this type of recurrence, NED in the torso and Mets to the brain and discovered that the percentage is anything from 2% to .04%. To put it in perspective, my neurosurgeon, Dr. Eisenberg has been a Board of Neurology Surgery certified surgeon since 1973 and has only seen 6 cases of ovarian mets to the brain his career. So don't panic, it's not very common!
Symptoms for me were primarily speech related, I couldn't find words to convey what I wanted to say. For an English major, this was very frustrating.
An MRI identified 3 lesions on my brain. One was on my left frontal lobe slightly over the midline, measuring 5.4 x4 cm. The other two were 1.1 cm and .05 cm respectively and lurked in my left parietal lobe near my brain stem.
Surgery removed the largest of the three, and with the exception of headaches, my recovery was swift, without incident, and I recovered my vocabulary.
Following surgery, the next step was whole brain radiation. This we elected to have at our local hospital since it would be daily (M-F). Side effects did include, Hair loss (fortunately I shaved my head early on, so it wasn't too traumatic. Hair loss happened about Day 12), I had extreme Exhaustion, Headache, and, finally, the Decadron I was on to prevent brain swelling caused my face to puff up, sleeplessness, and major munchies. When my hair began to fall out, my scalp got really itchy. I told the nurse and she gave me hydro-cortisone cream.
I made it through all fifteen days (m - f), and each treatment lasted no longer than 15 minutes. There is a mesh mask that they fit to your face, and they do bolt the mask (with you in it to the table) but unless you are SEVERELY claustrophobic, it's not an issue.
The next step in my treatment is Gamma Knife. We are hoping that the radiation eliminated at least one of the remaining lesions and shrunk the other significantly. Gamma Knife is pin point laser technolgy that floods a specific area in the brain from all angles to minimize radiation exposure/damage to brain tissue and eradicate ANY remaining cancer cells. This is scheduled for july 27th so I'll have to write about that, later in the month.
The good news, don't get hung up on stats you see on line. These are all out of date. Dr. Kwok, the Gamma Knife doc who will be doing the surgery with Dr. Eisenberg, told me that the chances of NOT having a recurrence in my brain is about 80 - 90%. Those are darn good odds in the world of oncology medicine! So, the prognosis is good!
Advice for you:
If your CA125 is going up and there is no evidence of cancer anywhere in your torso, go ahead and ask for a Head MRI. It can't hurt. Also, if you notice extreme headaches, dizziness, difficulty with words any cognitive or motor issues, please mention it to your oncologist and make him/her listen. Fortunately my husband is a former neuro nurse and he paid attention to my symptoms and contacted my oncologist with his concerns even after the possibility of brain mets had been dismissed as exceptionally unlikely. Remember, after everything possible has been proven wrong, whatever remains, however improbable, is the truth. Even Brain Mets. But don't be scared...just find yourself an awesome Neurosurgeon and Radiation Oncologist!
Hugs and Health!
Leesa
Comments
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you have been through so much
Thank you for the good info. I hope you never have to go through this again. Here is to your continued good health..val0 -
Man that really sucks. You
Man that really sucks. You have been put thru the ringer, but you sound like you are dealing with it as best as you can that goes with my saying, " you gotta keep your chin up even when it's down." But I know that is easier said then done. But keep on fighting teal sister.0 -
Leesa....there was a posterjbeans888 said:Man that really sucks. You
Man that really sucks. You have been put thru the ringer, but you sound like you are dealing with it as best as you can that goes with my saying, " you gotta keep your chin up even when it's down." But I know that is easier said then done. But keep on fighting teal sister.
Leesa....there was a poster on Inspire, asking about survivors with mets to the brain. I told her to come here and look you up, but if you have a chance, you might want to see if you can find her post.
Carlene0 -
Thank you
Thank you for the information. I know I look for information and first hand experience. This helps with the "what if, what is it like, what....etc" questions.0 -
Awwsome
That you are dealing with the unlikely brain mets and still think of sharing your experience to help others is extraordinary !
Colleen0 -
Brain MetsCafewoman53 said:Awwsome
That you are dealing with the unlikely brain mets and still think of sharing your experience to help others is extraordinary !
Colleen
I know what it's like because it happened to me too. I to was told it's a rare thing to happen. HUGS Maggie0 -
brain metsmaggie18 said:Brain Mets
I know what it's like because it happened to me too. I to was told it's a rare thing to happen. HUGS Maggie
I know cancer does what it wants to do, but was not aware of mets to
brain with ovarian cancer... abdominal, liver i was aware of....
thank you for bringing it up, just in case any strange neuro stuff comes up
hope you feel better soon!0 -
It's very rare, Dreamer.dreamer007 said:brain mets
I know cancer does what it wants to do, but was not aware of mets to
brain with ovarian cancer... abdominal, liver i was aware of....
thank you for bringing it up, just in case any strange neuro stuff comes up
hope you feel better soon!
It's very rare, Dreamer. Leesa, as usual, is trying to stand out from the crowd. LOL
Carlene0 -
I''m just trying to spread the cash....Hissy_Fitz said:It's very rare, Dreamer.
It's very rare, Dreamer. Leesa, as usual, is trying to stand out from the crowd. LOL
Carlene
St. Agnes gets paid for chemo and whole brain radiation
Mercy Medical gets paid for the amazing Dr. Im and his debulking surgery
University of Maryland Medical gets paid for Dr Eisenburg and his incredible team of brain surgeons and radiation oncologist Dr. Kwok (physical brain surgery to remove the large lesion and Gamma Knife to remove any leftovers)
That's almost all of the major hospitals in the city. I hope to avoid Johns Hopkins!
I don't have anything against them, just tired of hospitals!
Hugs and Health to everyone!
Leesa0 -
'reserved for'leesag said:I''m just trying to spread the cash....
St. Agnes gets paid for chemo and whole brain radiation
Mercy Medical gets paid for the amazing Dr. Im and his debulking surgery
University of Maryland Medical gets paid for Dr Eisenburg and his incredible team of brain surgeons and radiation oncologist Dr. Kwok (physical brain surgery to remove the large lesion and Gamma Knife to remove any leftovers)
That's almost all of the major hospitals in the city. I hope to avoid Johns Hopkins!
I don't have anything against them, just tired of hospitals!
Hugs and Health to everyone!
Leesa
Our hospital and radiology depts. have our names with a 'reserved for' placard at the entrance, not just the room. I would like to give that up too!! So - here we are at home working just as hard to keep track of our current life by organizing the medical bills and who gets paid as if we were working 'for real' and us getting paid. I know you've had to do that for your husband as well and hope he's doing well. But good news for those providers and facilities to get the compensation so well deserved taking care of you. I'm currently working on two appeals to my ins. company.
What is the recovery period after your procedure and when will you have the CA-125 re-measured - scans etc.? Not trying to be nosey, just learning. I remember when gamma-knife was just new (still is of course but now perfected) and reading about the procedure is so amazing. Over 15 years ago insurance companies were still wary of it and it took an arm and leg to get it approved. Also, there were only a few hospitals that would perform the procedure.
I wish you the best in the coming days and quick healing! I'll be thinking and praying for you and your family. Teal Heal High-5, El0 -
CA125 UpdateNCEllen said:'reserved for'
Our hospital and radiology depts. have our names with a 'reserved for' placard at the entrance, not just the room. I would like to give that up too!! So - here we are at home working just as hard to keep track of our current life by organizing the medical bills and who gets paid as if we were working 'for real' and us getting paid. I know you've had to do that for your husband as well and hope he's doing well. But good news for those providers and facilities to get the compensation so well deserved taking care of you. I'm currently working on two appeals to my ins. company.
What is the recovery period after your procedure and when will you have the CA-125 re-measured - scans etc.? Not trying to be nosey, just learning. I remember when gamma-knife was just new (still is of course but now perfected) and reading about the procedure is so amazing. Over 15 years ago insurance companies were still wary of it and it took an arm and leg to get it approved. Also, there were only a few hospitals that would perform the procedure.
I wish you the best in the coming days and quick healing! I'll be thinking and praying for you and your family. Teal Heal High-5, El
Regarding Recovery Time: Apparently I am an anomaly...I had brain surgery on Tuesday (Physical cutting away of the large tumor, complete with hole in my head) and was discharged from the hospital on Friday. A week and a half later I started whole brain radiation for 15 days. For the first week after that ended, I was exhausted....it's starting to get a bit better now. Gamma Knife is July 27 and is outpatient. I think they do an MRI about a month or so later? Because the radiation continues to work after you stop getting it.
Now, CA125 news: 18!!!!!!!!!!!!!!!! It's still not single digits, but I'll take it!
Hugs and Healing!
Leesa0 -
WOW!!!leesag said:CA125 Update
Regarding Recovery Time: Apparently I am an anomaly...I had brain surgery on Tuesday (Physical cutting away of the large tumor, complete with hole in my head) and was discharged from the hospital on Friday. A week and a half later I started whole brain radiation for 15 days. For the first week after that ended, I was exhausted....it's starting to get a bit better now. Gamma Knife is July 27 and is outpatient. I think they do an MRI about a month or so later? Because the radiation continues to work after you stop getting it.
Now, CA125 news: 18!!!!!!!!!!!!!!!! It's still not single digits, but I'll take it!
Hugs and Healing!
Leesa
This is fantastic news! Glad you're feeling a bit better.0 -
Congratulationsleesag said:CA125 Update
Regarding Recovery Time: Apparently I am an anomaly...I had brain surgery on Tuesday (Physical cutting away of the large tumor, complete with hole in my head) and was discharged from the hospital on Friday. A week and a half later I started whole brain radiation for 15 days. For the first week after that ended, I was exhausted....it's starting to get a bit better now. Gamma Knife is July 27 and is outpatient. I think they do an MRI about a month or so later? Because the radiation continues to work after you stop getting it.
Now, CA125 news: 18!!!!!!!!!!!!!!!! It's still not single digits, but I'll take it!
Hugs and Healing!
Leesa
This is wonderful news. 18 is a great number!0 -
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excellent eighteen!leesag said:CA125 Update
Regarding Recovery Time: Apparently I am an anomaly...I had brain surgery on Tuesday (Physical cutting away of the large tumor, complete with hole in my head) and was discharged from the hospital on Friday. A week and a half later I started whole brain radiation for 15 days. For the first week after that ended, I was exhausted....it's starting to get a bit better now. Gamma Knife is July 27 and is outpatient. I think they do an MRI about a month or so later? Because the radiation continues to work after you stop getting it.
Now, CA125 news: 18!!!!!!!!!!!!!!!! It's still not single digits, but I'll take it!
Hugs and Healing!
Leesa
That is so absolutely wonderful! I'm happy dancing as fast as my teal toes can go.
(((HUGS))) Maria0
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