Panicking!

Kat23502
Kat23502 Member Posts: 179 Member

Hoping you guys can reassure me a bit. A bit if backstory, for the last 20 or more years I have had migraine headaches. These haven't changed and I would even say are a bit better now than in years prior. Additionally, I have something called Meniere's which is a balance disorder that can cause vertigo. I was diagnosed with this four years ago after a brain MRI ruled out other causes. I would say my vertigo is about the same if not better than previously. I went today for my yearly follow-up with my ENT and he ordered a brain MRI since I was diagnosed with RCC in February. He said since I still have vertigo (again, better than it's ever been) he would have gotten another scan in May/June of next year which would be five years anyway, even without the RCC diagnosis. He said he just wants to be sure with my RCC disagnosis that there isn't any of it in my brain. I walked in there thinking it was a quick "hi doc, bye doc" and left there SO worried. I'm telling myself not to worry that he is being overly cautious to cover himself. I'm also trying to remind myself that while hopefully it is gone now, I now will always have a history of cancer. I'm trying to accept that most doctors will be overly cautious just in case and that I have nothing to worry about. However, I can't help but be terrified. It's Christmas and I love this time with my family and son and I don't want to waste it worrying until early January when my scan is. I put a call into my surgeon to get his thoughts as I trust him completely. Any words of reassurance, advice, thoughts?

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    edited December 2016 #2
    Hopefully nothing

    Kat,

    Given the small size of your tumor, mets to the brain from RCC are very unlikely. Lets hope hey are just being extra cautious.

     

     

    Icemantoo

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited December 2016 #3
    I can appreciate how you are

    I can appreciate how you are "going there, but NOPE do not allow yourself to freak out when you truly do not know anything yet.

    Trust me. But I know, easier said than done.

    Now vertigo IS treatable by PT! I  am surprised your ENT doesn't know about Vestibular therapy. The PT therapist must be trained and certified in this therapy. I suffered for years until I had this therapy. MRI used to rule in/out vascular, ear or any other issues. From what I know, dizziness/vertigo is not usually a sign of brain cancer. Even Cervical disc issues can cause migraines/vertigo.

    The therapist does this evaluation and can determine if its CNS Central nervous system, or ear or both. What they do is get the brain to communicate in sync with inner ear and feet I think she said. By doing these various exercises she can get this in sync and whalla, vertigo gone. It is worth the evaluation so see if your ENT will order Vestibular therapy after you get your MRI done.

    Again.. breathe, breathe, breathe... and trust there is help on its way!

    Hugs, Jan

  • sblairc
    sblairc Member Posts: 585 Member
    edited December 2016 #4
    Highly unlikely.

    It is my understanding that metastatic disease from RCC to the brain is less common than most other metastatic sites, and would be even more unlikely with a low stage low grade diagnosis. Please please do not worry and enjoy the holidays. You'll be great. 

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    edited December 2016 #5
    My doctor told me it is

    My doctor told me it is extremely rare for brain met with a pT1a  low grade tumor, especially without any unfavourable prognotics factors (like yours), let's live by the healthy days you have (likely at least another 100 years lol) instead of wasting it by worrying ;)

  • mrou50
    mrou50 Member Posts: 389 Member
    edited December 2016 #6
    I agree

    My ONC like many others on here said the same thing the brain does have potential but typically rare, and usually the disease has spread in other places first.  You shouldn't worry but at the same time it does not hurt to check.   Hang in there and remember that there are people who care for you and pray for you everyday not just your family but your friends on this site.

     

    Mark

  • foroughsh
    foroughsh Member Posts: 779 Member
    Doctors are overly cautious

    Doctors are overly cautious with survived cancer patients, I think your doctor is just like most others who would probably do the same but it doesn't mean you're at risk or even it's probable. Don't worry and enjoy your holiday, I also had headaches which lead to brain MRI, there was no Mets, they just want to make sure everything is OK. You're stage 1 and that is far from possible Brian Mets.

  • Allochka
    Allochka Member Posts: 1,074 Member
    You don't have brain mets,

    You don't have brain mets, doc is simply covering himself because of your anamnesis.

    of course it is worrying... My husband who had RCC had to have a chest x-ray couple of weeks ago to rule out pneumonia. I was crazy with worry. Was I conerned about pneumonia? Nope. I was afraid they would find mets...

    All was clear!

    BTW, when my husband was in hospital for surgery, he passed out briefly (due to dehydration, I guess). Doc even then hadn't ordered brain MRI, since husband was Stage 1, and for stage 1 brain mets are soooo unlikely!

  • adman
    adman Member Posts: 336
    Just Breathe!

    I just know you're OK; you were an angel to me a few weeks ago with words of wisdom. I know you're smart & healthy. You just have to be; nothing else will do!

    Praying for you today. God Bless! 

  • stub1969
    stub1969 Member Posts: 986 Member
    edited December 2016 #10
    Hi, Kat

    Your concern is understandable.  Like others have said--take a deep breath.  The odds are very much in your favor.  I'm not a gambling man, but my bet is on no mets.  Let us know how it turns out. 

    Stub

  • hardo718
    hardo718 Member Posts: 853 Member
    Oh gosh

    I'm quite sure you have nothing to be worried about, you're just "lucky" enough to have thorough doctors.  Certain to be unnerving, but given your early diagnosis, my guess is you'll be given the all clear.  Do try to enjoy the upcoming holidays, maybe a bit of eggnog will help?

    I'll keep you in my prayers.

    Donna~

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    edited December 2016 #12
    It is always a worry. BUT

    It is always a worry. BUT worry doesn't change the outcome. I had a similar situation. Got a CT scan of my brain....to my surprise, they found my brain! LOL.

    Actually everything was fine. I am sure you will be fine as well. Try not to worry  - and enjoy your well deserved Christmas with your family.

    Hugs

    Jojo

     

  • Blessedgirl94
    Blessedgirl94 Member Posts: 12 Member
    Been there!

    Hi Kat!

    I was diagnosed with ChRCC in June, and won't have my first scans until next June.  I also get migraines.  Lately, they have been different - more like tension headaches.  Of course I think that I may have a brain met, but i know that realistically, that isn't likely (my tumor was only 1.6cm).

    I think that the holidays are stressful, and any time I have an ache or pain, the first thing I think is - oh no....  its back.

     

    I guess this is our new normal.

     

     

  • Deanie0916
    Deanie0916 Member Posts: 628 Member
    edited December 2016 #14
    I pray that

    you can have a peaceful great Christmas with your family and cast these worries out of your head and heart. I am reassured by all of the comments here about it not being likely to be mets. You are in my prayers...

     

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited December 2016 #15
    Hugs to you and yours

    Even on a good day, we humans tend to waste energy on worry.  I hope and pray that you can enjoy your family and the season.  Hugs to you all.

    Jerzy