Questions about swelling

[zjane]

Hi all -

2 questions about swelling post FSR.

I've read that swelling usually occur 6-18mo. post FSR.  Does that mean the tumor will keep getting bigger due to the swelling up till 18 month?  or does it mean the swelling will start around 6 month and disappear before 18 months post FSR?

How much swelling is to be expected?  I've read 2mm but from another post 6mm.  Any ideas?

[ppearl214]

Hi zjane,

Ok, for me... (and will see how others chime in)..... initial tumor swelling began in the first 6 mos (granted, I had CK, not FSR).  My last MRI in Oct '06, which was 8 mos post CK, found that my AN had a slight decrease in size.  Like you, I have also heard from 6 mos to 1-1/2 yrs.  Mine might slightly swell down the road and I'm prepared for that, but as long as the DNA of the growth is dead, that works for me.

Hang in there... will see how others respond as well.

Phyl

[zjane]

Hi Phyl,

Thanks for the speedy reply. 

I'm beginning to think my FSR had failed, my 9 mo. MRI showed 2mm increase all around however with signs of necrosis.  Today I had my 14.5 mo. MRI and it's bigger than 5 month ago!  However I can see more "shadows" on the AN.  I'm so confused.  How can one tell if it's re-growth vs. swelling from the MRI?  The thoughts of having to wait another 6 mo. is ... uhhh!

I haven't received the report and am feeling sick to my stomach.  I've mailed out the CD to my FSR doc and will let you know what he has to say.

Thanks,
Jane

[ppearl214]

Hi Jane,

This is only my opinion, so take it for the 2 cents its worth.... we know MRI's on AN's have a +/- 2mm, so as you did not state what the size difference was between the 9 mos and 5 months later (what it is now), I cannot directly reply.  Yes, it may swell just a hint bit more, but also, does the size differential fall in line with the +/-2mm?  As for the necrosis, well, for me (and only me), that is the key. 

You note you don't have the report yet, so let me ask you this... was the MRI done at the same location as the past MRI's?  Did you ask for a copy of the report?  Maybe when the report comes in, it may note "more rim enhanced growth" (necrosis) or some other wording to help put you at ease.  For me, difficult to state since it sounds like you glanced at your films unless the MRI tech/radiologist noted something in particular to you.

Again, just my 2 cents... bet someone else has thoughts worth more.

Phyl

[zjane]

Hi Phyl,

Thanks!  First please excuse my bad English and it gets worth when I'm stressed.

To clarify, no I have yet received any writen report.  I only took the scan and looked at it on my computer.  The software has a measuring tool so I used it to get the sizes. 

Two dimensions were sightly increased by 1.x mm.  One dimension went from 0.98 to 1.35.  That's just way too much!

My problem with the +/- is unfortunately Since the diagonosis this has been my 5th MRI (initial diagnosis, wait and watch follow up, base line pre FSR, follow-up 1 and follow-up 2)  I have yet received any number that's less than the prior scan.  I'm very discouraged.

And I forgot to mention, last time the report was written, it had stated growth.  The FSR doc said it was inconclusive and could be due to swelling and he had seen signs of necrosis.  So I don't know who to believe.

Thanks again for the two cents (although I think it worthed more than 2c  ).  I'll let you know what happens.  Thank you it's nice to have someone bounce ideas with at this time.

regards,
Jane

[Lorenzo]

HI Jane,

I can only speak about my own case as far as swelling is concerned.

I had CK. Largest dimension prior to treatment was 26mm. At 6 months it had swollen by 10 - 15% (as stated in the report) and necrosis had started. By 12 months necrosis was continuing and swelling had stabilised. No MRI at 18 months due to the stable state of the AN. At 24 months necrosis was still evident and increased and swelling shrank back to pre-treatment size, so back to 26mm. That is still larger than the size at diagnosis.

Maybe this will shrink even more, but at the moment I'm just happy that the swelling has subsided, as my AN was already pressing against my brainstem before it started swelling. As long as the AN is dying I'm happy. Swelling after FSR is something to be expected and for me happened between the end of treatment and settled back sometime before 24 months. I don't think there is a precise time frame for the process, in my case that's when the MRIs taken showed the stages.

Hope this is of any help, 1, 2, or even 5 cents (Euro) worth! 

Ciao, Lorenzo

[zjane]

Thanks Lorenzo for your 5c in Euro!

From the film I did see more "shadow" on it the area seemed bigger than the 9mo. film... I'm going to see what the FSR doc has to say about that.

[pearchica]

Hey Jane: hang in there. I go for cyberknife here in the next month or so- dependent on schedule-and I think they told me it would swell maybe 2mm on average?  But I have had 4 opinions with 4 separate measurements.. the whole measurement thing is an educated guess and Phyl is right on this - the original MRI might be off by 2mm- but in my case at 24 *22 *19 mm- heck its' a medium to large size tumor- what's a few more mm in the scheme of things!

Take care and keep us posted on your progress.  Annie

[ppearl214]

Annie, I'm SO going to be  cheering you on. Thrilled your decision making process is complete and regardless of what you were to choose/have chosen, it has to feel like an elephant off your back to know a decision is made and now time to rock and roll!

Jane, ok.... I want that dang report! Period! I want to see what the radiologist is noting and then, when your dr reviews the report and films, let's see what he says.  I think that is the hardest part of radio-surgery. We wait and see, we wait for the dang thing to die.  Some have expectations that it will shrink a lot (it may some, but not much, based on what has been shared with me), but... for me... and again, only 2 cents/pence..... as long as necrosis is there, as long as the DNA of the growth is gone-gone-gone, I'm as happy as a pig in...er... well, you know.

Hang in there Jane.  I want that report! Let's see what it says!

(btw, Lorenzo, the Euro is worth more right now against the USD... you'll be shopping in the US in no time!)

Phyl

[macintosh]

This is from an abstract from an article in Neurosurgery: February 2006. The primary author is BE Pollock:

<Tumor expansion after VS radiosurgery rarely denotes a failed procedure, and the majority of patients only require further imaging. Approximately one third of tumors that enlarge will remain increased in size compared with the time of radiosurgery but will not show sequential growth. Additional tumor treatment should be reserved only for patients who demonstrate progressive tumor enlargement on serial imaging (2% in this series). >

You can find an index to this and other peer reviewed articles at <www.pubmed.gov>

[pearchica]

Nice going macintosh! Thanks for the report.  Of course now I will be a measuring specialist too.  Jane if it's of any comfort Dr. Soltys at Stanford told me this bugger of mine would take 3 to 5 years to fill off- So I have to concur with Phyl and Lorenzo- as long as you are showing death- its a good thing.  And guess what, if for any reason it doesn't die off completely, you can still get a second radiation treatment..(that's what Dr. Chang told me).

So Hang in there and try to keep distracted if possible!  Annie

[zjane]

Received this email from the doc, will call him tomorrow.


We reviewed the films and found the tumor area bigger

Still I believe most likely its due to necrosis but I cannot prove it

The options are waiting or not

I would like to speak and or meet with you when you wish

I'm trying to figure out what questions to ask him tomorrow when I talk to him.  Please advice.  Thanks!

[zjane]

p.s.

I also spoke to Dr. Chang @ stanford, I'm going to ship out my scans (baseline, 9mo and 15 mo) to get his opinion.


very confused