In "watch and wait" mode

StephN · 06-30-2006, 07:56 PM

Had my brain MRI yesterday. Met with the Rad onc and his nurse today. Things seem to be calm in the area where I had the brain surgery in Feb., which turned out to be radiation necrosis anyway.

My fluid pocket (pseudomenengocel) has reduced even since the last CT scan before leaving the hospital. So maybe it is stabillizing. Have to hope and watch what I do with bending my head down. Want to give that area a further chance to heal well.

Only question is a spot enhancing which is in the same spot as the other small tumor that was Gamma Knifed. Looks like the radiation necrosis thing could be finally showing up in that spot as well. Nothing has shown on the past 4 MRIs in that area, so this is new.

Radiation necrosis typically shows up between 6 and 18 months after the procedure, so I am still in that window.

Annemarie · 06-30-2006, 08:28 PM

Hi,
I had the same exact thing. I had a 5mm single lesion met in 10/04. The first scan everything looked good and then at the 10 month mark my MRI they were unsure if it was scar tissue or another brain met. Same exact story as yours and they scheduled another MRI in 2 months and again had the same concerns but after reviewing it with several top radiologist oncologists their opinion was that I was fine and since then I have been NED. So far so good. Good luck to you. I know how scary this is for you. I went on disability until they told me I was okay.

Esther · 06-30-2006, 08:35 PM

Steph Thanks for posting the update, glad things are calm at this point for you. One question, is necrosis a bad thing or just basically scar tissue and of no consequence?

Barbara H. · 06-30-2006, 09:13 PM

Hi Everone concerned with this necrosis vs. recurrence,
If you look at the literature, necrosis can be a problem. It can be just as debilitating as a tumor. Necrosis is a response to radiation damage and a lot is still unknown about it. That is what my radiologist told me and necrosis is a special interest of his.
I am still dealing with this issue. I had surgery for a possible recurrence last December. It turned out to be necrosis, but the area is still lighting up, as PET-CT and MRI-Spectroscopy scans remain inconclusive. I just had the above repeat scans yesterday. I am up in NH and am terrified to hear the results. I'm not going to deal with it until I go back to Boston for treatment next Wednesday. I don't want to go through that surgery for a third time. If the area still lights up I'm hoping that they will continue to just watch it.
Steph, I know how you feel and I hope that this area of concern resolves in time. My radiologist said that necrosis can resolve on its own, but not always.
Best wishes,
Barbara H.

mamacze · 06-30-2006, 09:49 PM

Dear Steph,
Now you are entering a white knuckle phase of watch and wait. It is unbelievable that you solve one spot of brain mets only to have another one light up. When does your window of 6 - 18 months close?
Love Kim from CT

StephN · 06-30-2006, 10:13 PM

Thanks for the kind words of support, ladies.

My Gamma Knife was just 18months ago, so the normal window for necrosis is ending, but this is only for the typical appearance. One of the reasons for short-time frame followups with brain tumor patients is to watch for activity in the old tumor site as well as for new spots.
The activity in the old tumor sites could be EITHER tumor re-emerging OR radiation or necrosis as a result of surgery. Scar would not normally light up the same way.

There is a rather nasty thing called Space Occupying Necrosis, which does grow and take over a scar area or where healthy tissue might reappear. If what is lighting up turns out to be this beast, it is necessary that it be removed, as your normal tissue has to fight with this.

The U of W has a new MRI machine and I could see the difference from my last scan and the one yesterday as the computer has 2 screens and can call up the different scans for comparison with the same view. The new machine shows clearer images and they will have an even better one in a couple of months. With this new machine, I feel condfident that there were no small mets arriving.

But, again, this question is a common occurence with brain mets (or brain tumors in general). My rad onc did not seem worried as he said we already proved necrosis on the other old tumor site with the surgery in Feb. If the scan in 2 months shows much change than it will most likely get another shot in the Gamma Knife.
Barbara, I will send some very special thoughts to your brain tumor site - GO AWAY!

Lolly · 06-30-2006, 10:14 PM

Steph, I'm sorry you're having to deal with this worry, but I guess it comes with the territory we all navigate. You do so extremely well, I'll be keeping my fingers crossed that it's the necrosis and that it stabilizes soon.

<3 Lolly

Sheila · 07-01-2006, 04:47 AM

Steph

It will hopefully resolve.....it seems like we climb one hurdle to have another pop up. You have done so well...here's hoping that this area will leave you alone forever!!!!! Sending good thoughts to both you and Barbara.

pattyz · 07-01-2006, 06:38 AM

Steph...

I'm so hoping that whatever this new enhancement is, will resolve by itself at next MRi. It stinks that the necrosis has complicated your (and others) brain mets tx's. Like, it's not enough to just DEAL with the mets!

AND: may your old surgery spot continue to heal completely.

hugs,
patty

pattyz · 07-01-2006, 06:50 AM

Barbara,

Your post gave me some 'calm' about trying to get an MRispec to try and clarify the status of my current 8 lesions. They have remained stable for five months, but I was commenting to Esther that perhaps the added test could give more info... Now I see that may not be the outcome, afterall.

If you are not experiencing any symptoms, no matter what the tests show... that is a very good thing at this point, IMHO. And if your scans stay 'inconclusive', I think it's a safe/good idea to do the watch/wait, but LIVE, too.

Sending good wishes,
xoxopattyz

AlaskaAngel · 07-02-2006, 10:48 AM

Hi Steph,

I am ever so glad you continue to travel and take the initiative with making things happen in your life instead of just letting life happen to you.

High hopes for your sailing over this hurdle,

A.A.

sassy · 07-02-2006, 11:19 AM

Steph,

Keeping you in my thoughts and prayers that all will turn out well. Got my fingers and toes crossed too!

Sassy
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