Brain tumor... WTH!?!?!

phoenix23

Hi Everyone,

Sorry I've been absent of late, but I had to take a break from all the information overload and was busy busy busy with appointments. My surgery for complex mass on Ovary was scheduled for beginning of July, but that may get put on hold now as they've discovered a Brain Tumor wrapping around my Carotid Arteries and Optic Nerves and a Cyst as well for good measure in there too... and another tumor on my Thyroid! ARGH!!!!! Now I might have to have "3" surgeries... Craniotomy, Thyroid Biopsy and a Laparotomy! Goodness gracious, when it rains it pours. What a way I'm going to spend my 31st Birthday this year...

kikz

Wow
You are sure going through it! You seem to be upbeat which is such an important part of dealing with this disease. For such a young women I think you are getting more than your fair share. I will be praying for you and hoping for the very best.

Karen

phoenix23

kikz said:

Wow
You are sure going through it! You seem to be upbeat which is such an important part of dealing with this disease. For such a young women I think you are getting more than your fair share. I will be praying for you and hoping for the very best.

Karen

Hi Karen, Thanks for the
Hi Karen,

Thanks for the kind message. The waiting to find out what 'all' of this 'is' has been the worst part! I just want to know and get on with it! They keep thinking its one thing, then find something else and still no concrete answers as the more they're digging the more 'interesting things' they're finding. I'm pretty upset about the brain tumor though, not just for the obvious reasons but because my primary care doctor ordered an MRI a few years ago after I began having some pretty crazy symptoms and headaches with nose bleeds that would fell an elephant! She said then they found a tumor but when sent to a Neurosurgeon, he brushed it off and said it was so small it was just likely a slight abnormality in how my brain was formed. Well he was WRONG! Now its a bigger mess with its tentacles wrapped around precarious places. I'm just getting angry I think. So many times, I was brushed aside in the last few years because I was 'young' and a 'worry wart' because of all the cancer and death in my family... Well I had very good reason to be! The current Radiologist said that it can clearly be seen as a tumor on my 'OLD' MRI as well, but that someone just had to take the time to really look at it, adjust the contrast levels a bit to see the boundaries better and 'there it was' quite clear even then! Argh! I think they just get in such a rush, that when its NOT exactly what they thought it was, they brush it off as 'all is okay' and send you on your way!

Frustrating to the 'enth degree!

txtrisha55

Keeping you in my prayers
It finally sounds like some are taking you seriously now, but are now finding way to much. But better to find everything out and deal with instead of poopooing the thoughts are just in your head. Sorry they are finding so much though. Good Luck with all the testing and any surgeries they perform. Have you told any of your family yet or are you still holding out? Do you have any support with you as you are going through this? Hopefully you have shared as much as you can with someone to be there for you.

When everything is said and done and you are on the road to recovery, is there a possibility to go back to the original drs and possible do litigation against them for not taking you seriously? I do not know this stuff but if the person tells you now that if they had looked closer to the MRI they would have known it was bad. Or is it just not worth it because the past is the past and you want to move forward.

Will keep you in my prayers. trish

lovesanimals

txtrisha55 said:

Keeping you in my prayers
It finally sounds like some are taking you seriously now, but are now finding way to much. But better to find everything out and deal with instead of poopooing the thoughts are just in your head. Sorry they are finding so much though. Good Luck with all the testing and any surgeries they perform. Have you told any of your family yet or are you still holding out? Do you have any support with you as you are going through this? Hopefully you have shared as much as you can with someone to be there for you.

When everything is said and done and you are on the road to recovery, is there a possibility to go back to the original drs and possible do litigation against them for not taking you seriously? I do not know this stuff but if the person tells you now that if they had looked closer to the MRI they would have known it was bad. Or is it just not worth it because the past is the past and you want to move forward.

Will keep you in my prayers. trish

Dear Phoenix23
I am so, so sorry that you are going through all this. Sending you good thoughts and praying for the best possible outcome.

Hugs,
Kelly

Gottalovelife

Wow you do have a lot to handle
Was curious if you had thyroid problems, or it just happened to show up om the MRI? Some doctors get carried away with making all the money they can, but there are a few left that still care hopefully. You are so young to have this much to deal with. Keeping you in my prayers.

Cindy

Gottalovelife

Sorry posted twice

Sorry posted twice

mopar

SO SORRY, PHOENIX
I know this is what you were dreading. And with your family going through so much right now, this must be a huge strain on you.

All I can say is I'm doubling up on my prayers for you. I think of you often, and was hoping your next post would be better than this. But you need to celebrate your birthday big anyway! Why miss out on those precious moments. You already know what MAY be ahead to deal with, so live in the moment and soak up the attention and love!

Sending you and extra dose of hugs and prayers. . .

Monika

leesag

Multiple Brain Metastes Survivor
I had a large egg shaped tumor in my left frontal lobe, impeding my expressive speech. This was removed by brain surgery.

There were 2 or 3 smaller masses close to my brain stem that were shrunk by 15 day whole brain radiation.

The remaining tumor was barely there and was removed with Gamma knife.

All that was one year ago. It was verified to be OVCA and apparently it isn't common for OVCA to skip right on up to the brain, but I've been anything but common through all of this! (See my profile for details)

At any rate, it's not the end of the world, and in fact both my radiation oncs assured me that it would most likely NEVER recur in my brain again. I have my full faculties, and while my short term memory isn't the best, my vocabulary is as rich as it had always been before cancer.


Finally, I found a cream in case you get "radiation damage" to your skin--It was developed by rad oncs, and I've only been using for a couple of days. Ask your onc about it, it's called miaderm radiation relief. My skin has stopped peeling for the first time in a year!

One other thing gals, please don't flag this post, this isn't a scam or an advert. I was diagnosed OVCA Stage IIIC in Jan 2010, with Brain Mets bumping me to stage IV in May 2011. Just trying to share something that worked for me.

Leesa

phoenix23

leesag said:

Multiple Brain Metastes Survivor
I had a large egg shaped tumor in my left frontal lobe, impeding my expressive speech. This was removed by brain surgery.

There were 2 or 3 smaller masses close to my brain stem that were shrunk by 15 day whole brain radiation.

The remaining tumor was barely there and was removed with Gamma knife.

All that was one year ago. It was verified to be OVCA and apparently it isn't common for OVCA to skip right on up to the brain, but I've been anything but common through all of this! (See my profile for details)

At any rate, it's not the end of the world, and in fact both my radiation oncs assured me that it would most likely NEVER recur in my brain again. I have my full faculties, and while my short term memory isn't the best, my vocabulary is as rich as it had always been before cancer.


Finally, I found a cream in case you get "radiation damage" to your skin--It was developed by rad oncs, and I've only been using for a couple of days. Ask your onc about it, it's called miaderm radiation relief. My skin has stopped peeling for the first time in a year!

One other thing gals, please don't flag this post, this isn't a scam or an advert. I was diagnosed OVCA Stage IIIC in Jan 2010, with Brain Mets bumping me to stage IV in May 2011. Just trying to share something that worked for me.

Leesa

Thank you for all the
Thank you for all the support ladies! It really does help to hear from you, and hear your strength and courage and also your bad days as well!

I still don't know anything more then last time. My specialists have gone on Vacation until July!!!

Over the past few days, some new and troubling symptoms have shown their scary face... One, not so new, but making its presence known more is the very large lymph node on my neck, immediately below my left ear (in that space just behind the jaw but below the earlobe) it has been there for months, smaller, but hard and firm. Now, it is the size of a large marble. It does not hurt itself, but my neck is becoming sore I've realize, from holding me head funny now when I sleep trying to get comfortable with it. The second scary symptom, and this is in the last two days... my gums are bleeding. Like REALLY REALLY bleeding with pieces of tissue coming off in patches! I was just at the dentist two weeks ago and he gave me a PERFECT score on my dental exam, no gingivitis, nothing, nada! Said I have perfect teeth and people like me put guys like him out of business! So, I know this can't be sudden gum disease! What in the world is it? Anyone else experience something like this? Perhaps I should make a separate post about that to ask? Its tremendously scary!

kimberly sue 63

phoenix23 said:

Thank you for all the
Thank you for all the support ladies! It really does help to hear from you, and hear your strength and courage and also your bad days as well!

I still don't know anything more then last time. My specialists have gone on Vacation until July!!!

Over the past few days, some new and troubling symptoms have shown their scary face... One, not so new, but making its presence known more is the very large lymph node on my neck, immediately below my left ear (in that space just behind the jaw but below the earlobe) it has been there for months, smaller, but hard and firm. Now, it is the size of a large marble. It does not hurt itself, but my neck is becoming sore I've realize, from holding me head funny now when I sleep trying to get comfortable with it. The second scary symptom, and this is in the last two days... my gums are bleeding. Like REALLY REALLY bleeding with pieces of tissue coming off in patches! I was just at the dentist two weeks ago and he gave me a PERFECT score on my dental exam, no gingivitis, nothing, nada! Said I have perfect teeth and people like me put guys like him out of business! So, I know this can't be sudden gum disease! What in the world is it? Anyone else experience something like this? Perhaps I should make a separate post about that to ask? Its tremendously scary!

OMG
WOW, you have a lot to deal with at such a young age of 31. I hope you have many people around to help you through all of this. One day at a time!! Kim

txtrisha55

phoenix23 said:

Thank you for all the
Thank you for all the support ladies! It really does help to hear from you, and hear your strength and courage and also your bad days as well!

I still don't know anything more then last time. My specialists have gone on Vacation until July!!!

Over the past few days, some new and troubling symptoms have shown their scary face... One, not so new, but making its presence known more is the very large lymph node on my neck, immediately below my left ear (in that space just behind the jaw but below the earlobe) it has been there for months, smaller, but hard and firm. Now, it is the size of a large marble. It does not hurt itself, but my neck is becoming sore I've realize, from holding me head funny now when I sleep trying to get comfortable with it. The second scary symptom, and this is in the last two days... my gums are bleeding. Like REALLY REALLY bleeding with pieces of tissue coming off in patches! I was just at the dentist two weeks ago and he gave me a PERFECT score on my dental exam, no gingivitis, nothing, nada! Said I have perfect teeth and people like me put guys like him out of business! So, I know this can't be sudden gum disease! What in the world is it? Anyone else experience something like this? Perhaps I should make a separate post about that to ask? Its tremendously scary!

How are you doing?
I have not seen a message to update us on how you are doing? Let us know. In my prayers. trish

kimberly sue 63

phoenix23 said:

Hi Karen, Thanks for the
Hi Karen,

Thanks for the kind message. The waiting to find out what 'all' of this 'is' has been the worst part! I just want to know and get on with it! They keep thinking its one thing, then find something else and still no concrete answers as the more they're digging the more 'interesting things' they're finding. I'm pretty upset about the brain tumor though, not just for the obvious reasons but because my primary care doctor ordered an MRI a few years ago after I began having some pretty crazy symptoms and headaches with nose bleeds that would fell an elephant! She said then they found a tumor but when sent to a Neurosurgeon, he brushed it off and said it was so small it was just likely a slight abnormality in how my brain was formed. Well he was WRONG! Now its a bigger mess with its tentacles wrapped around precarious places. I'm just getting angry I think. So many times, I was brushed aside in the last few years because I was 'young' and a 'worry wart' because of all the cancer and death in my family... Well I had very good reason to be! The current Radiologist said that it can clearly be seen as a tumor on my 'OLD' MRI as well, but that someone just had to take the time to really look at it, adjust the contrast levels a bit to see the boundaries better and 'there it was' quite clear even then! Argh! I think they just get in such a rush, that when its NOT exactly what they thought it was, they brush it off as 'all is okay' and send you on your way!

Frustrating to the 'enth degree!

I'm sorry to hear of all of
I'm sorry to hear of all of the health issues that have come at once. I think ovca is enough. I couldn't imagine dealing with three issues of great concern. Hang in there and deal with one day at a time. Kim

kimberly sue 63

leesag said:

Multiple Brain Metastes Survivor
I had a large egg shaped tumor in my left frontal lobe, impeding my expressive speech. This was removed by brain surgery.

There were 2 or 3 smaller masses close to my brain stem that were shrunk by 15 day whole brain radiation.

The remaining tumor was barely there and was removed with Gamma knife.

All that was one year ago. It was verified to be OVCA and apparently it isn't common for OVCA to skip right on up to the brain, but I've been anything but common through all of this! (See my profile for details)

At any rate, it's not the end of the world, and in fact both my radiation oncs assured me that it would most likely NEVER recur in my brain again. I have my full faculties, and while my short term memory isn't the best, my vocabulary is as rich as it had always been before cancer.


Finally, I found a cream in case you get "radiation damage" to your skin--It was developed by rad oncs, and I've only been using for a couple of days. Ask your onc about it, it's called miaderm radiation relief. My skin has stopped peeling for the first time in a year!

One other thing gals, please don't flag this post, this isn't a scam or an advert. I was diagnosed OVCA Stage IIIC in Jan 2010, with Brain Mets bumping me to stage IV in May 2011. Just trying to share something that worked for me.

Leesa

rare
OVCA in the brain is rare. I was told re-occurances are usually just in the abdomen. I was also told even liver and lung mets are rare. KIm