Progression or Necrosis in the brain?
 

Hi my fine bunch!
I am having a rough day. I had an MRI today on my brain and I am confused on the results. Since I go to two hospitals, they cannot compare results until I go and bring the discs myself.

I had an MRI in Feb with the better facility (Hospital A) - results were no progression, but looked hazy. Could be necrosis/tissue death

I had an MRI today with (Hospital B, who doesn't deal with radiosurgery - results progression, as tumour looks bigger than the one MRI they did in November.

Just confused here, and quite upset. I don't know what to do. My appointment to see excellent Dr. in Hospital A is for Monday at 7:45am. I have Easter, a birthday party for my baby who is turning 2 on Saturday. I want to enjoy this weekend, but I'm afraid my worry will take over my thoughts. I'm feeling down. I do, however, have two doctors who think this is no reason to put up red flags at the moment. I feel like, if I just had an MR done in Feb. and it was fine, that it should still be fine.

Not sure what to do for the next 3 days. Oh and I'm back on 4mg dex. But my headaches have already gone. I was having headaches, here and there for a week or two, but I was sick and coughing like mad. I feel fine now. No headaches, no dizziness, nothing. I still have vision loss, of course, but other than that, I feel just fine. ????????

Has anyone had an MRI done and the tumour looked bigger and it was just necrosis?

Love confused me.

p.s.Thanks for listening.

Re: Progression or Necrosis in the brain?
 

I JUST came upon your post and read this...my heart was so softened...I don't know if my dx comes up or not, know that I am already praying for you...against anxiety and worry...that this will be a a wonderful and blessed weekend, time to focus on LIFE!!!
Huge Hugs!!

Re: Progression or Necrosis in the brain?
 

I had necrosis twice after brain surgery, and did have the surgery twice to have it removed. It does grow so it is highly possible that you have necrosis instead of progression. I wouldn't recommend it, but I went back to work a week after one of my surgeries for necrosis. I wish you all the best and feel for you that have to go through this.
Barbara H.

Re: Progression or Necrosis in the brain?
 

Thank you so much for your messages. I really appreciate your time to support me. I am feeling better now, it may be the ativan, but whatever works! ;)
I'm leaning on the necrosis side. I know that Sunnybrook, Hospital A, is a good hospital and know their stuff. They are the ones that originally said "necrosis and post tx scarring".
I try to find some humour in my day to help me cope. I guess it's time for Saturday Night Live on Netflix! xoxo Jill

Re: Progression or Necrosis in the brain?
 

Hi Jill know all this is so stressful having any scans. I live right beside Sunnybrook and had my radiation there but my chemo and oncologist is at North York General. Why was your second MRI done at a different hospital. Is your oncologist at Sunnybrook? I feel as you said that Sunnybrook is an excellent cancer centre and I am sure your doctor there will get to the bottom of this. Keep taking the Ativan (love that stuff!) have a happy Easter weekend and your little one's 2nd birthday. Let us know how you are doing next week. Best wishes Lois

Re: Progression or Necrosis in the brain?
 

Necrosis and post-tissue scarring are really hard to differentiate on MRI. They still scare Nina with the "slight trace of dye uptake versus background". Progression is really easy to see over a four month or so time period. I am thinking that you are going to be fine.

Re: Progression or Necrosis in the brain?
 

Lois, I got my chemo at LHO (Oshawa). My onc is here too, as well as my rad onc. They don't do radiosurgery at LHO, so I went to Sunnybrook for that. I have great docs, who take good care of me. Even said they'd move heaven and earth for me. lol
I will keep you posted. Happy Easter to you too. Jill

Paul - you are music to my ears and heart. Thank you for that.

Re: Progression or Necrosis in the brain?
 

Dear Jill -
There have been MANY of us here on this site who have had to get brain mets treated. Seems about half report this same conundrum. I had it. The rad oncs thought my 3cm tumor was not completely dead after Gamma Knife and went into the back of my head (cerebellum) to take out the area to be sure it was not tumor regrowth. It was NOT - the active place was 100% necrosis. It was not bothering me and I did not need to go back on the dex. That surgery was just a knee jerk reaction, in 20-20 hindsight!

Go slow with the thing. Usually the radiated tumor will quiet down and give you no more trouble with a little waiting.

Re: Progression or Necrosis in the brain?
 

Jill,
I'm living where you are, my young friend. I think mine is swelling, not progression...just like yours. Worrying won't make either of us feel better, so let's not do it! Deal?

Enjoy the baby's birthday...and Easter!
Swelling/necrosis sucks...but it's only temporary. We'll both be fine in no time!!

Enjoy your weekend (and the ativan) :) !!
Denise

Re: Progression or Necrosis in the brain?
 

It's hard not to worry. But we've got to live in the 'here and now'. (Easy for me to say - I've totally forgotten the panic mode I'd had in the past ... :)

Happy Birthday to the baby and Happy Easter!

Re: Progression or Necrosis in the brain?
 

Here's hoping that you'll be celebrating the permanent demise of a goner-of a spot-of mets and it's just some necrotic remnants.

Rooting for ya, Jill!

Hope you have a very special time enjoying your baby's BD tomorrow and a lovely Easter.

Paula

Re: Progression or Necrosis in the brain?
 

Jilly,

Although my circumstances were slightly different than yours, I too had brain MRIs that indicated potential regrowth and I was also very worried. I would agree with Steph to give it some time.

My brain tumor was 2.6 cm, and the radiation onc recommended surgery followed by 5 dosages of IMRT, or image modulated radiotherapy, because he felt the tumor was too deep for one shot of SRS.

After the surgery and radiation, I was followed every three months with a brain MRI. At first all was progressing normally, but then each scan started to show increased enhancement, until after several scans the rads onc could not longer rule out possible regrowth.

My neuro-onc ordered a brain PET which turned out not to light up, at which point he said, with cancer we can never say 100%, but I'm 95% sure that this is just scar tissue or otherwise necrosis around the tumor bed.

Before I had the brain PET the neuro onc said that even if the PET lights up in that area, that sometimes even scar tissue can light up, and then they would have to operate again and take a look.

My craniotomy/radiation was in 2008.

Hang tight and try to put it out of your mind!! And enjoy the baby's birthday and Easter!!

Joan

Re: Progression or Necrosis in the brain?
 

Steph and Joan, thanks for your knowledge and more hope for me. I really hang on to your words on days like today. I went to the Doctors today and they seem to think it's progression. They can't say for sure. They say the tumour is so close to the brain stem, that they are not sure whether or not they want to biopsy. They said that 5 doses of radiation may be the recommendation, and that I go on Xeloda (? I think). I am interested in IT herceptin, but I need to do my research, as I'm not sure what the criteria is. I'm scared, sad, but trying to stay possible, especially reading what you ladies have gone through.
Not sure what else to say, other than I don't know what the heck is going on with me right now. Doctors are having a chat about me at 1pm EST, and he will call me back to let me know what they think. It's my decision, but I tend to go with the doctors, but that scares me too. Feeling a bit lost and confused.
Much love. And no this isn't some cruel April fools joke. That would be awful! ;)
Love Jilly

Re: Progression or Necrosis in the brain?
 

Jilly,

I'm sorry to hear that you're still dealing with this. It's very unnerving.

If the doctors seem to think that you're having progression but they can't say for sure, did they offer to do a brain PET? That scan would be an another non-invasive test so that they can get clearer about what's going on.

Also, I'm not sure why Hospital B is involved. It might help to get your brain MRIs in only one place, and the best place would be where the SRS was done.

This could truly turn out to be nothing. I remember it was difficult dealing with the uncertainty. Try to take it one step at a time. If the doctors were leaving it up to me, I would ask for a brain PET before I let them radiate the same area again or do a brain biopsy, on a hunch.

Sending you many, many hugs!!
Joan

Re: Progression or Necrosis in the brain?
 

Joan,
Thanks so much for your message. I really do find comfort when reading it all. They told me this afternoon that they'd like to get a biopsy. It's risky though, so I'm scared. I see the neurosurgeon on Friday. Also, what's the difference between a brain MRI and a brain PET?
I will make sure that I ask all of the questions I need to before I make a decision. It's all very overwhelming right now and I must remember to think, it could be nothing. Just like you said. :)
Thanks Joan. Like I said, you have helped me SO much through this. I really do appreciate you, and my sweet her2 friends who seems to take care of each other really well.
Love you all! Jill

Re: Progression or Necrosis in the brain?
 

Jilly,

A brain MRI is a scan that is like a CT scan. They show tumor morphology. For example, the report of the brain MRI that identified my brain nodule said that the nodule was cystic, rather than a solid tumor (I believe that all primary brain cancers are solids, but metastatic tumors can be cystic, as well). The report of the CT of my lung said the nodule had spiculated edges, which is a sure sign that the nodule was cancerous.

A PET scan measures metabolism, and the CT part of a PET/CT provides a better roadmap than the PET scan alone. A high rate of metabolism is involved in cancer cell metabolism, and when the rate is higher in one area than another, that spot lights up on PET. So PET scans don't show morphology, but rather a signal. However, just because an area lights up doesn't mean that it's cancerous, as nonmalignant causes, like tuberculosis can also light up, for example.

When my neuro-onc first recommended a brain PET, I was surprised because I didn't think it was possible since the brain has a lot of metabolic activity and would be lighting up all over like a Christmas tree. But he said that the metabolism factor is adjusted. As it turned out, the area of the craniotomy was exactly the same as the surrounding area, meaning that it didn't light up.

My neuro-onc explained that a brain PET was the next step in determining whether I might have regrowth of the tumor and would help to explain why my brain MRIs were showing increased enhancement every 3 months for several scans.

Hang in there!!

Joan

Re: Progression or Necrosis in the brain?
 

Hey Jilly, Want to tell you that I am pulling for you and hoping for a positive outcome! You are in good hands with Joan and Steph...they both have much knowledge and insight. Chin up! Ceesun

Re: Progression or Necrosis in the brain?
 

Joan,
Thank you! I appreciate the time you have given to explain to me. I asked my rads onc already and he said that the big institutions here don't do the PET's. Weird. I will ask the neurosurgeon on Friday as well. I am looking in to clinical trials called Afatinib and Geron Brain. I am not sure about the biopsy still. I don't like the risks, but I may not have an option, if it continues to grow. Not sure what's happening inside my head, but still praying for necrosis or anything that isn't cancerous!
MRI tomorrow at hospital A, so that's good. Hospital B is only 5 minutes from my house and was my chemo/breast rad hospital. Hospital A was my SRS hospital and they are the BIG hospital in Toronto for the brain. Perhaps the MRI at Hosp. A will show something else, since the whole system is different, like even looking at the images. God I hope this is the case!!!!!
Thanks for helping me out and listening. I love YOU!!!
Jill

Re: Progression or Necrosis in the brain?
 

Jill,
I'm so sorry to just be responding now...I was away from the board for a few days.

I am exactly where you are. But my neuro onc says he will NOT biopsy so close to my brain stem because of the fear of bleeding/stroke. I suppose my swelling/progression area may be closer than yours...but PLEASE, PLEASE ask. IMHO nothing would be worse than stroking out.

I hate that I have to deal with this...but somehow I hate it even more for you. I think it's your age, and your beautiful babies. Please, don't hesitate to call me literally any time. I'm on so much decadron I go literally for days without sleeping. I don't have the wisdom of experience, but I'm living it right now, just like you.

Praying for you...sending love
Denise

Re: Progression or Necrosis in the brain?
 

Denise, I've been thinking of you. I want to call, I just need to wait for the kids to be sleeping. If I'm not running around going to appointments, I'm either on line looking for clinical trials, or snuggling my kids on the couch. :) I'll call, we'll chat about IT herceptin, clinical trials, decadron, and much more fun topics like that! argh.
I hope you're feeling alright, and we'll chat soon. Thanks for the message my dear. I love hearing from you.
xo Jill

Re: Progression or Necrosis in the brain?
 

Jill,
Guess what...I was a young mom too...and my sister is one now...I'm used to talking on the phone while being interrupted repeatedly by precious little voices who need mommy's immediate attention. :)

Looking forward to a long chat soon!
Till then...thinking of you, praying, and sending love...
Denise

Re: Progression or Necrosis in the brain?
 

Jill...I just wanted to add my prayers. Im also a member of the brain mets club, and I also have a tumor close to my brain stem. :( Reading what Steph and Denise wrote, all I can really offer is make sure you discuss all the options and all the risks thoroughly with your doctors. I'm so sorry that you are going through this. I know it must make it even more difficult having young children who cannot possibly understand what is going on...and that just breaks my heart. Lots of positive energy headed your way...Jody

Re: Progression or Necrosis in the brain?
 

Hello all -
a little update for you and the fact that I'm typing this may help my mood, as I get to get things off my chest. (like there's much on my chest literally, haha, funny?)
I am really down. Well, up and down. I am happy that the neurosurgeon and I decided to take a wait and see approach for either necrosis or growth. I will have another MRI in 2 months. I think I am having a really tough time because of my vision. I think it's gotten worse. It's only on one side though. I worry about my other side, even though, I know the chances of that happening to the other side or HUGE, it still scares me. I have to bring myself back to "in the moment" and living one day at a time. I'm a bit of a dreamer, so it's a different life living in the moment. It's nice and peaceful, once I'm there though.
The surgeon also said something about lipids and cholorides or something?!?! How one indicates perhaps regrowth and the other necrosis and it's showing both. Now, I know that these are just scans and it's not under a microscope, so there is really no way of 100% knowing until the darn thing is biopsies, but even that could not show 100% he said. If they went in and only got a sample of necrosis, and there was actual regrowth, then it was for nothing anyway. Argh! I'm frustrated. I'm on a rollercoaster. I feel like I need help. I feel like I talk about it too much with my family and they may be getting drained. I also feel that I was feeling fine, just a couple of headaches, but since I started dex, I'm dizzy now. I want to up the dex dose though, because we are going on a plane tomorrow and I don't want any problems. Dex is no friend of mine, or my fella! lol poor guy.
Anyway, thanks for letting me went.
I really love you all. You have helped me so much.
Love Jilly xoxo

Re: Progression or Necrosis in the brain?
 

Jill,
My advice...take the dex. Swelling is BAD. Vacations in Florida...VERY good!
Get on that plane! Relax! Enjoy!

Don't forget to pack the Ativan too!

Talk to you soon!
Denise

Re: Progression or Necrosis in the brain?
 

Thanks Ceesun.
Update: Going to taper down on the dex. From 8mg to 4mg, then see what's it's like to go off completely.
I'm back from Florida and MARRIED!!! I'm Mrs. McCullough. :)
Got married on Anna Maria Island Beach, just the four of us. (my little family)
Anyway, I am still trying to cope with the uncertainty of this brain poop.
I feel like I'm fine,, but get really scared about my vision. I just want my vision to either stay the same or get better. NOT WORSE!
I've been thinking to everything you've all said/written, and I hold on to all of it really tight when I go to the dark place, so I can grab on to the hope that you have given me and yank myself out. I love you ladies for your help.
I have an appoint with my onc tomorrow to talk to her about lapatinib or a clinical trail. I really want drugs, but she doesn't want to drug me if my brain is NED. I feel like I'm constantly having this discussion with her. I don't know what to do. My SRS doc said I should be be on a drug, so what gives?
argh.
anyway, chat soon.
xo Jilly

Re: Progression or Necrosis in the brain?
 

YEY!!!! Congrats on your wedding! So happy for you and your little family. How wonderful. :)

Re: Progression or Necrosis in the brain?
 

MARRIED!!!!! How perfectly wonderful. Blessings on you and your family!
Keep the faith. XOXO

Re: Progression or Necrosis in the brain?
 

Congratulations on getting married. I wish you and your family all the best. I hope you follow up MRI is ok.

Re: Progression or Necrosis in the brain?
 

Jill,

Congratulations on your wedding !!! Love it!!

Joan
xo

Re: Progression or Necrosis in the brain?
 

Oh my goodness, congratulations on your marriage! It sounds perfectly wonderful on the beach with your family...I never traveled much (read at all) because I was always a single mom and couldn't afford it, but for my 40th birthday I was finally able to go with my family to Florida, Amelia Island, and I just loved it! I would have stayed forever. Of course, I live in Kansas (ummm, not very scenic..lol), so it was a big change for me.
I hope the appointment with your onc went well, and you have agreed on a treatment. Lots of prayers and positive energy headed your way, and congratulations again. :)

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Huge Blessings on your marriage!!! Beautiful!!! <3

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Thanks ladies,
Nice to hear some good news for a change.
Trips are nice. Nice to get away and "try" to forget about everything else.
I wait another 4 weeks to have another MRI and then we will see what to do from there. A drug may be on the horizon. Hopefully something works for me and I'll have more good news to tell.
Love all your comments and congratulations. You all make me smile.
KsGal, I'm glad you got to finally go to Florida. It's such a nice, relaxing, sunny place. Love the oranges, sandy white beaches, and SEAFOOD!!!! ;) I get it. I live in Oshawa, ON Canada and it is NOT scenic here at all!!! We always planned on moving to the East Coast here in Canada, but stupid cancer decided to make an appearance and has put a bit of a delay on our future plans. I am still dreaming of it though.
Jill

Re: Progression or Necrosis in the brain?
 

Congrats Mrs. McCullough! Sounds like you had a wonderful time with your family, I'm glad.

Hope you have great news on that MRI in four weeks and that your vision improves soon.

Paula

Re: Progression or Necrosis in the brain?
 

Thank you Paula. xoxo fingers crossed! much love
Susan, hugs. Thank you.
I'm very happy to be Todd's wife, finally.

Re: Progression or Necrosis in the brain?
 

Your new avitar looks great! You look beautiful and radiant and what a lovely family you guys make together. :)

Did you get married on the beach?

Wishing you the best,

Paula

Re: Progression or Necrosis in the brain?
 

Thanks Paula! xo
That's very nice of you to say. We got married on Anna Maria Island Beach, FL. It was 6pm, the perfect time for a beautiful sunset.
It was such a great day!
Good memories.

Re: Progression or Necrosis in the brain?
 

Hello my pals!
Here is my update, in case some were wondering.....
Doc called today and said I look "stable"? WT? OMG!!!
I am very happy with this word. The last time I spoke with him, it was all about progression talk, today it seemed more radiation effect/scarring/necrosis talk.
This also made me happy.
So, next....get me off of these darn devil pills, and wait for another MRI in 6 weeks!
I also asked him if he thought I should go on Lapatinib and he said yes, as it penetrates the brain. I said, well, I'll have to convince my ONC, he said....I'll talk to her!! yipeeee......
So next stop...Lapatinibville, no biopsy, and a trip to NYC!
Take care all and thanks for your prayers, words, love, hugs, and all things positive. I wish more positive for all of you.
xoxo Jill

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Hi Jill, just wanted to chime in and say "WOOHOO". that is great news! Stable is such a fine word, isn't it?

Congratulations on your recent wedding also, how magical having it on the beach. I think I will google now, and see where you were! I am such a sticky beak, like to know everything!

I have absolutely no knowledge on brain mets, but just wanted to send you good wishes from Australia
Dawn xx

Re: Progression or Necrosis in the brain?
 

Thanks Sticky beak. lol
We got married on Anna Maria Beach in Florida. We even have a slide show on Youtube, which I found randomly. I didn't post it! lol weird. Thanks for the Australian wishes. I must get back there one day!
xoxo Jill

Re: Progression or Necrosis in the brain?