Brain PET/CT was "bright"

StephN · 02-03-2006, 10:50 PM

Got the call this evening after the doctors had finished with their patients and had a chance to confer.
The scan showed glucose uptake in the area of the old tumor that is showing some regrowth. "Consistent with tumor activity."
This is not a definitive answer, but the only way they can really tell is to open up the area and take out the offending matter.
I will see the nerosurgeon and the radiation oncologist (both brain specialists) on Wed. and plan from there. Seems to not be a difficult surgery as it is near the surface and behind my left ear.

On the positive side, if they get the area cleaned up and it is still cancer on the move there is only perhaps a little bit left to radiate, and a better chance of stopping it altogether. My docs seems to think that an aggressive plan is best to get this under control - as necrosis can keep growing as well as cancer.
The rad onc said he did have a case just last week of a brain tumor regrowth that looked like mine on the scans, but DID turn out to be necrosis that the brain area was working very hard on trying to control.

Still have no symptoms that I can notice, and there was NO mention of inflammation. Meaning NO decadron so far.
So that is the latest.
Thanks again to everyone who is sending caring thoughts my way.

al from Canada · 02-04-2006, 01:04 AM

I will continue to think of you and hope for the best.

Your fighting instinct makes me wonder about your heritage: Huns, mongols, klingon....... that's the only way to win.

cheers,
Al

02-04-2006, 06:34 AM

Keep your chin up Steph, thinking of you and praying.

sassy · 02-04-2006, 07:24 AM

Keeping you in my thoughts and prayers.

Sassy
________
NaughtyClarice

02-04-2006, 08:33 AM

Well.........

(((((Steph))))

This is still pretty frustrating 'eh? And potential for scarey days ahead. But, it DOES sound as though you are under excellent care and I know that goes a long way in helping to get through this latest challenge.

I feel a bit better knowing that, yet want to 'hold your hand' in those quiet fearful times when you are alone with what may lay ahead...

Hoping for lots of in-person type support for you, great outcome, fast recovery,
with love & hugs,
patty

Barbara H. · 02-04-2006, 09:05 AM

Hi Steph,
You will be able to handle this. As I told you, I was back to work full time teaching third graders a week after my surgery and I had them wean me off the decadron in a week. I went into the hospital Friday at noon and was home on Sunday by noon. I felt pretty well the week I was off from school and ended up going to two parties the following weekend.

You also never know. It still could be necrosis. The radiologists that read my scans thought it was recurrrent disease and it turned out to be necrosis. There is still a lot unknown about necrosis according to radiologist that works with my surgeon, and a lot on the internet that is old and will scare you. When necrosis is growing it lights up. Eventually, after a while the body takes care of it. My area still shows activity(post operative changes that they would like to see resolved by now) so I need another scan in March. In your case I would get your information from your doctors and make a list of questions that you may have.

No matter what they find, I believe that you will have a favorable outcome. The tumor was originally three cm. if I remember correctly. That is quite large for radiation, and I'm not surprised that you may have some radiation effects and possilble cancer activity that was left. I think it's a wise decision to clean it out and to know what your dealing, and I have a very good feeling that you will be fine.

Best wishes,
Barbara H.

Sandy H · 02-04-2006, 01:49 PM

Hi Steph: So far so good. I know it is scary but at least it doesn't sound life threatening and does sound treatable and maybe there will be no need to treat. Thanks for the update as I have been watching for your results. hugs, Sandy

02-04-2006, 04:13 PM

My best wishes. I will send my prayers.

lindaw · 02-04-2006, 04:43 PM

Dear Steph

I wish you all the best and will be thinking of you.

love
linda

RhondaH · 02-04-2006, 07:40 PM

My thoughts and prayers are with you.

Rhonda

hope · 02-04-2006, 07:47 PM

My thoughts and prayers are with you. God is a miraculous lord and I know he will bring you safely through this trying time. Hope

AlaskaAngel · 02-04-2006, 08:30 PM

Challenge is just a word until it happens to you. I don't know why you have had so many, but I'm sending you hugs, Steph. Best wishes for the discussion Wednesday.

AlaskaAngel

02-05-2006, 12:31 AM

I had an area that was radiated and a year later started to show up again on scans. They watched it continue to grow from 4 mm to 1.5 cm over 8 months and it was positive on a special PET scan designed to tell the difference between necrosis and tumor. When my rad onc finally said it was time for surgery, I wanted another opinion.

Then my husband heard about a neurosurgeon at UCSF, Dr. Michael McDermott who did a special test called an MR perfusion mapping that is more sensitive than standard scans. On his test, it turned out to be necrosis with some extra blood vessels because as someone said, the brain was trying extra hard to get rid of it. This guy was kind, caring, smart, and only treats brain tumors and saved me from a surgery.

Another neurosurgeon told me that in his 15 years of practice, when he goes in after these alot of them are mixed tumor and necrosis. But when he took the tumor cells and studied them, they were alive but not able to reproduce, sort of like sterile tumor cells.

I hope this isn't confusing but this necrosis stuff is tricky. I am glad to hear though that yours is close to the surface and surgery should go smoothly. Mine was deep and not easy to get to and no one wanted to operate so at least now I have some peace of mind.

Good luck!

eric · 02-05-2006, 07:28 AM

Steph, I'm sorry that the news was not all that was hoped but it sounds like your docs are top notch. Between you and them, any cancer left there better look out!!!!

StephN · 02-05-2006, 01:26 PM

Thanks to all of you for the good wishes and personal experiences. It all adds to my knowledge "bank."

Was not able to log on due to a horrific storm Friday night and yesterday. We lost the cable TV for an extended time. Power was out only a little while - and I would rather have a hot dinner and be warm than see the TV!
We watched the DVD of "An American in Paris" - Leslie Caron's first movie.

Will know more about the specifics of my case after Wed, as I have not even seen the films myself.
My faith is strong and you help it stay that way.

IRENE FROM TAMPA · 02-06-2006, 05:56 AM

My prayers and thoughts go out to you Steph. You are such a trooper.

lu ann · 02-06-2006, 05:58 AM

I will pray for you. God Bless You. Lu Ann

Kim in CA · 02-06-2006, 08:27 AM

Dear Steph,

I too fear the eventuality of surgery for these sneaky brain mets, but posts like Barbara H's help to reassure that we can deal with whatever comes along. Just wanted to send my love, support and prayers your way.

Kim in CA

Tami · 02-06-2006, 07:26 PM

Sending tons of prayers and positive vibes to you

Tami

TriciaK · 02-06-2006, 07:46 PM

Steph, you are one of many people on this board that I really look up to, and I know how highly you are thought of by so many others. There are many thoughts and prayers going out for you, including mine. I will be thinking of you prayerfully Wednesday, and hope you will let us all know as soon as possible how everything turned out. Besides your amazing strength and faith, it sounds like you have a really sharp oncologist, and together you'll lick this again!Hugs, Tricia