Brain Mets and Ovarian Cancer

leesag
leesag Member Posts: 621 Member
Ok, so I thought I would post some information about Ovarian Cancer that Mets directly to the brain with no stops in between, for future readers. I'll start with some stats and some background and then discuss the treatments that I have had and the treatment that remains, along with side effects.

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

  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    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..val
  • jbeans888
    jbeans888 Member Posts: 313
    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.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    jbeans888 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
    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.

    Carlene
  • kayandok
    kayandok Member Posts: 1,202 Member
    Dear Sweet Leesa,
    I'm so glad that you caught the mets early and have such wonderful care, including the Ken Nurse. How cool is that, that he was a neuro nurse?!
    Praying you recover from all this soon!
    Gentle hugs,
    kathleen
  • kellyh33
    kellyh33 Member Posts: 287
    You are so brave!
    I admire you for your courage and your positive outlook. Keep up the good fight!
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    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.
  • Mwee
    Mwee Member Posts: 1,338
    uncommon Leesa
    Leave it to you to go for the strickly uncommon and then to handle it with uncommon grace and strenght.
    (((HUGS))) Maria
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    Awwsome
    That you are dealing with the unlikely brain mets and still think of sharing your experience to help others is extraordinary !
    Colleen
  • maggie18
    maggie18 Member Posts: 1

    Awwsome
    That you are dealing with the unlikely brain mets and still think of sharing your experience to help others is extraordinary !
    Colleen

    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
  • dreamer007
    dreamer007 Member Posts: 61
    maggie18 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

    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!
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834

    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.
    It's very rare, Dreamer. Leesa, as usual, is trying to stand out from the crowd. LOL

    Carlene
  • leesag
    leesag Member Posts: 621 Member

    It's very rare, Dreamer.
    It's very rare, Dreamer. Leesa, as usual, is trying to stand out from the crowd. LOL

    Carlene

    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
  • NCEllen
    NCEllen Member Posts: 115
    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

    '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
  • leesag
    leesag Member Posts: 621 Member
    NCEllen 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

    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
  • jloe
    jloe Member Posts: 174
    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

    WOW!!!
    This is fantastic news! Glad you're feeling a bit better.
  • Tethys41
    Tethys41 Member Posts: 1,376 Member
    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

    Congratulations
    This is wonderful news. 18 is a great number!
  • LaundryQueen
    LaundryQueen Member Posts: 676
    Tethys41 said:

    Congratulations
    This is wonderful news. 18 is a great number!

    @Leesa: I'm sure your number
    @Leesa: I'm sure your number will go even lower as time goes on...so glad to hear your news.

    (((hugs)))

    LQ
  • Mwee
    Mwee Member Posts: 1,338
    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

    excellent eighteen!
    That is so absolutely wonderful! I'm happy dancing as fast as my teal toes can go. :)
    (((HUGS))) Maria