Author Topic: FAST Regrowth of Residual Tumor  (Read 1835 times)

chrisabbott

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FAST Regrowth of Residual Tumor
« on: January 02, 2020, 06:18:41 am »
I can't seem to find anyone else that has had this/posted outcomes?  I had translate on a 3.1 cm tumor in June, and was prepared for possibility of the residual 15% to regrow, but everywhere says these buggers are slow growing.  I was shocked to find 8 mm growth in 6 months.

I have surgery scheduled for January 13th, and surgeons are recommending to follow up with radiation as soon as I've healed.  Call me crazy, but I'm more nervous about the radiation than the surgery - what if that fails too?

Has anyone else had fast regrowth like this?  I'm hoping if someone has, they were able to nix it?
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
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ANSydney

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Re: FAST Regrowth of Residual Tumor
« Reply #1 on: January 02, 2020, 03:50:28 pm »
Hi Chris, do you have an MRI immediately after surgery done last June? I'd say you need this baseline.

chrisabbott

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Re: FAST Regrowth of Residual Tumor
« Reply #2 on: January 02, 2020, 10:25:11 pm »
Yes I did - they did that same evening as the day of surgery.  That's how we know the residual tumor grew 8 mm in the longest dimension in just 6 months.  The tumor is stuck along my facial nerve so they took out the thickest area, but left a sliver along the nerve. 
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
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ANSydney

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Re: FAST Regrowth of Residual Tumor
« Reply #3 on: January 02, 2020, 10:49:47 pm »
So a residual amount was left and it grew 8 mm. How big is the tumor now?

chrisabbott

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Re: FAST Regrowth of Residual Tumor
« Reply #4 on: January 02, 2020, 10:56:28 pm »
Hi,

It's back up to 24 x 14 x 16 mm

Funny thing is, in the last month I've had considerable improvement in my symptoms, including those I had well before surgery.  I still have a little numbness in my face, and do not make tears in my left side, but the area that is numb is smaller & I still get ticklish ripples/mild zaps which I think is a sign its still recovering.  I have my energy and metabolism back, and my eyelashes are growing normally again (I assumed they stopped growing a couple years ago due to menopause, but they're back!)

« Last Edit: January 02, 2020, 11:00:36 pm by chrisabbott »
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
GK next

ANSydney

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Re: FAST Regrowth of Residual Tumor
« Reply #5 on: January 03, 2020, 12:35:27 am »
Chris, It's great to hear that your symptoms are improving. Have you had a look at your MRIs on your PC (you can readily get the CD)? Given things are improving, what do you think about waiting for 6 months (or 3 months) after your last MRI to do a detailed comparison?

chrisabbott

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Re: FAST Regrowth of Residual Tumor
« Reply #6 on: January 03, 2020, 06:03:00 am »
I can't wait, the tumor grew 8mm in 6 months.  I'm counting the fact that I recover well from surgery as a blessing, and that the reduction in size of the tumor has helped my symptoms, but I can't walk around wondering when this thing pressing on my brain stem is going to do some serious harm.

I have a little anxiety about facial nerve damage the second time around - I really didn't see any worsening first time but they need to be more aggressive to stop this thing.  I think I can deal with that, but I had hoped to avoid radiation and it appears that this would be recommended following the surgery (about 8 weeks after).  That's the part that worries me - what if it doesn't stop regrowth?  Everyone says these things grow slowly, but mine isn't slow at all, so how do I know it won't keep coming back?
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
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Surfer

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Re: FAST Regrowth of Residual Tumor
« Reply #7 on: January 06, 2020, 07:11:23 pm »
It doesn't hurt to send your MRI's to another qualified surgeon for evaluation and advise. We don't get many chances with decisions like this.
February 2016- 4.6 cm removed at Sloan Kettering NY by Dr. Gutin and Dr. Selesnick.  Residual left behind to preserve the facial nerve. Two year MRI indicates a shrinking of the residual. Three year MRI indicates no change in size.

chrisabbott

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Re: FAST Regrowth of Residual Tumor
« Reply #8 on: January 06, 2020, 08:32:05 pm »
    Thanks - I will try to get opinions after my surgery on Monday.  I just don't have time to chase up right now, with work, filing for divorce and having a life.  I believe surgery to get the size back down is the correct route, and no worries about the quality of care/skills of surgeons for that task.  My tumor quickly grew past the size that other options as first line of defense are an option.  I looked at the MRI before I met with my surgeons, and already deducted that it was now slightly double in size since surgery in June, and grew 8 mm in 6 months. 

    What I'd really like to know, is has anyone had a very fast regrowth of residual tumor following surgery, and if they had radiation treatment after, did it work, and who did it?  My surgeon proposed the radiation as follow up, and OU in OKC has all the latest in equipment, however I have reservations. 

    -Not keen on the idea of radiation period
    -Tumor is stuck to facial nerve and brain stem - can radiation take care of the tumor and not damage those?
    -One hears about tumor regrowth being harder to treat if radiation fails, what if that happens with my tumor that appears to be a sprinter?
    -Is it possible that there's something different about this tumor and its not even a regular vestibular Schwannoma?  I had a giant cell tumor in my hip in my twenties, and it seems impossible for the two to be related, but highly improbable for the same person to have both?[/li]

I just wish I could hear from anyone that had a fast growing tumor and what their experience was....
« Last Edit: January 06, 2020, 08:35:02 pm by chrisabbott »
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
GK next

jami

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Re: FAST Regrowth of Residual Tumor
« Reply #9 on: January 11, 2020, 05:40:18 pm »
Hi Chris,

Sorry to hear about this, about all of it. BUT I support the having a life! I have to remember to do that...

At my 6 month post surgery MRI, there was growth and the recommendation was to take action (vs wait and see) from all the medical personnel.

I personally leaned towards surgery, because recovery went SO well, and (to be very very honest) it seemed that i would get more time off to recover. This stuff can be overwhelming. After talking to 3 drs, the third one told me that he STRONGLY recommended radiation. He distinctly remembered how tightly the remnant was hanging on the facial nerve and thought that CK would be a better choice.

The way i understood it, its better to go surgery > CK > surgery. Additional surgeries mean they have to adjust the plane (the way they go in i guess) but thats the biggest challenge. Additional radiation can have longer term impacts to health, maybe.  But its so much less invasive.

And it was SO much less invasive in comparision.

Those are my thoughts.
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

chrisabbott

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Re: FAST Regrowth of Residual Tumor
« Reply #10 on: January 11, 2020, 09:23:21 pm »
Thank you so much for sharing your experience - I was feeling like the odd one out ;o)

I'm tying up loose ends this weekend, and report to hospital 5 am Monday morning for my surgery.  My son is taking me, and a dear friend is going to join him.  I feel blessed in many ways, and determined to be so positive about this, that I'll be driving everyone crazy!
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
GK next

jami

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Re: FAST Regrowth of Residual Tumor
« Reply #11 on: January 12, 2020, 08:15:05 am »
Be sure to let us know how it goes- although I know it will go great!
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

chrisabbott

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Re: FAST Regrowth of Residual Tumor
« Reply #12 on: January 12, 2020, 09:09:02 pm »
For sure I will!

I'm busy adding extra goodies to my bag, and snacking/drinking - because after midnight, I don't know when I'll get another decent meal ;o)
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
GK next

rhodywarrior

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Re: FAST Regrowth of Residual Tumor
« Reply #13 on: January 13, 2020, 07:48:13 am »
Thinking about you, Chris! Let us know how you're doing. Sending good vibes over to you today.

chrisabbott

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Re: FAST Regrowth of Residual Tumor
« Reply #14 on: January 15, 2020, 08:24:12 pm »
Here's an update:

Started good Monday - surgeons said they got more of the tumor, but as expected still had to leave some.  My abdominal incision for the fat transplant was trying to bleed again but they were keeping an eye on it and fixed it before I left the operating theatre.  I came round a bit sore, but in the to be expected range.  Unfortunately, a couple hours later, I heard a noise like a very loud white noise, and 10 minutes after that my hearing on my right side was gone.  I'm deaf right now.  they took me down for an MRI no cause identified. 

Steroids might help, but the surgeons are not highly hopeful - they chatted with other neurosurgeons, some had heard of this happening, none with their own patients.  Apparently this can happen with surgeries not even done on the head (like heart or spine).  For some reason, I have become ComplicatedChris!  A magent for unusual stuff and its not a good unusual.    On the bright(wish) side, I can have a cochlea implant if the hearing isn't returning within 6 weeks.

Today, I noticed a drip from my nose when I leaned forward - I'm sure at least half members of this website knows what that means... CSF leak will be fixed tomorrow morning.  I have to swap my lovely PJs for a stylish hospital gown again! 

I was feeling great today (well once they ramped up the steroids I did) - the surgery will be simplified by the fact that they can plug up my left side knowing the hearing is already gone.  I was using a bicros hearing aid and doing very well with it.  Not sure about what comes next, but as someone that interviews people for a living, the thought of being deaf is not easy to feel good about.

I'll keep you posted - hopefully everything will turn out fine in the long run, and others won't despair if they run into some hurdles on their healing journeys
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
GK next

 


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