Progression or Necrosis in the brain?

dearjilly · 03-28-2013, 01:22 PM

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.

SusanN · 03-28-2013, 03:35 PM

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!!

Barbara H. · 03-28-2013, 03:46 PM

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.

dearjilly · 03-28-2013, 04:22 PM

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

LoisLane · 03-28-2013, 05:04 PM

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

Rolepaul · 03-28-2013, 05:22 PM

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.

dearjilly · 03-28-2013, 06:33 PM

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.

StephN · 03-28-2013, 07:26 PM

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.

NEDenise · 03-28-2013, 10:24 PM

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

Jackie07 · 03-29-2013, 03:55 AM

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!

Paula O · 03-29-2013, 04:30 AM

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

Joan M · 03-29-2013, 06:50 AM

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

dearjilly · 04-01-2013, 09:14 AM

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

Joan M · 04-01-2013, 10:03 AM

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

dearjilly · 04-01-2013, 06:44 PM

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

Joan M · 04-01-2013, 07:11 PM

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

Ceesun · 04-02-2013, 07:49 AM

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

dearjilly · 04-02-2013, 07:54 AM

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

NEDenise · 04-02-2013, 08:39 AM

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

dearjilly · 04-02-2013, 04:16 PM

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