Brain MRI this morning
 

It's that time again...
I have a brain MRI this morning, and get the results this afternoon. If you have a moment, may I please ask for some prayers this morning?
Im not going to lie, I am a bit worried about this one. I had two brain tumors at my last MRI, but if they have grown or multiplied I have to move on to another treatment. Right now I am on Tykerb and Herceptin, which is totally easy.
My radiation oncologist will not use Cyberknife if there are more than five brain lesions. :( But if they have grown or there are more, and the total is less than five, then that is the current plan.
I've been doing the scanxiety thing for a couple of days. This morning it took me an hour to find my toothbrush because I, apparently, put it on my nightstand instead of back in the toothbrush holder..lol! So, obviously I have been a wee bit distracted.
Thank you for the prayers and positive energy and support...I'll update when I get home this afternoon. Big hugs to everyone.

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Lifting you up in prayer this morning.

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Prayers for you KS - please let us know the results when you can.

all the best
caya

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Praying...

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Praying, praying, praying for shrinkage or all clear.

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Praying hard for great results and good news!

hugs,
shobha

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Wishing for those little brain mets to have gone away - to stay!

Best wishes and prayers for a good scan.

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Best wishes xxx

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I hope all is going well x

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Prayers coming via express delivery!
Big hug, Marie

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I hope your scans went well yesterday! :) Just said a prayer for you.

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Praying-lit candle.

Karen

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Ks-
I prayed for you yesterday from inside my own MRI machine! Now I'm waiting for relusts too. Prayers for both of us, and fingers crossed!
Love
Denise

Re: Brain MRI this morning
 

Well. I think I had one of the most bizarre days ever, and I didn't even get the MRI.
Let me preface this by saying, I have had four MRI's of my brain up to this point, and had no problems whatsoever.

Back at the time I got my expanders after my double mastectomy, I also found out I was stage IV. It had taken me about a month to recover from my mastectomy all together...that is the amount of time I took off work and stayed at my moms. I got two fills in my expanders, and then I decided if I was stage IV this was a waste of money and time in surgeries and procedures and things that I didn't want to go through. At that time, I thought I had a limited time here to spend with my kids, etc, so I decided to just keep the expander and forget about finishing everything.

So, on to yesterday, keeping in mind I have had FOUR MRI scans of my brain before. I go in, get my little ear plugs, hop up on the table. The technician pushes me into the tube, and says she will be back halfway through to give me the contrast material. She goes in the other room. I notice my chest feels strange. I reach my hand up there to feel my chest, and my implants are smashed flat to my ribcage in the middle, and look like some crazy deformed doughnuts. Im pressing the panic button....press press press. Im hollering..excuse me! lol

She comes back in, pulls me out of the tube and they pop right back up like nothing ever happened. I wasn't sure how to word it, but I said "When you put me in the machine my implants deflate". So, I pulled up my shirt, she slid me into the tube again...doughnuts. Like where my nipple should be has completely sunk into my chest...pulls me out and it goes back to normal. She gets someone else..they watch my implant/doughnut sequence. We all laugh hysterically because, hey, it is a little weird looking, you know?

So, I spend an hour sitting in the hall waiting while they call my plastic surgeon and the manufacturer of my expanders, and it turns out they are not MRI friendly. If I have an MRI it could burn me internally and a host of other bad things. It was not noted anywhere by my plastic surgeon. Im curious as to why they would use expanders on a cancer patient that were not MRI friendly...as obviously we all get a lot of scans including MRIs.

Right at this time, we get a call from my stepmother's school (she teaches at a college) that she is on the way to the hospital in an ambulance, and they think she may have had a heart attack. Luckily, I am right across the street from the hospital, so we go over to the ER. It wasn't a heart attack, thank goodness, but it took a couple hours to even see the doctor in the ER and get her checked in for observation.

Then I think...okay, back to the scan situation.

I call my radiation oncologists office, because i have an appointment at 1:30 to get the results, and obviously Im not having a scan. The number the operator gives me is to an exam room, not the front desk. I call the clinic operator back...she gives me the number to the front desk for the chemotherapy unit. While I am on the phone with the chemotherapy unit, the radiation oncologist actually calls me, and I can't figure out how to change lines on my phone to answer. I decide..screw all this, Im just going to drive over there, which I do. By the time I get there, he and his head nurse are in a procedure over at the hospital that will take four to five hours. Frustration! I leave a message with the receptionist, and I start across the parking lot. It's pouring rain, and the key won't work the automatic door locks! I just started cracking up, because what are you gonna do, right? It only took a few minutes to get it working again.

My radiation oncologist called me this morning and said a PET scan will not cross the blood brain barrier, and a CT scan isn't precise enough, and there doesn't appear to be any sort of MRI for the brain where the chest won't be "in the tube" so to speak...so I can't have another brain scan until I go in and get my expanders removed and either go completely without or get new implants.

Im pretty bummed, and scared to death. What if there are all kinds of crazy things going on up there in my little noggin, and we don't know it because I can't get a scan!!!!! So right now I am waiting to hear from either the radiation oncologists office (who were calling my plastic surgeon) or my plastic surgeon to see how fast I can get this all done.

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and thank you so much for all the prayers and positive energy and support. It means the world to me. I talk to my family all the time, but they don't really "get it" like all of you, who go through the things I go through. ((hugs)) to all of you...

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Holy Shit! That story is just unbelievable.

I never in a million years expected to hear anything like this.

Honestly what can you do, but laugh. This is seriously crazy stuff.

I don't understand about the Pet Scan. I mentioned that in the last few days, and was wondering why the Pet Scan didn't include the brain. Perhaps it is because of the blood brain barrier, hmmmm . . .

Geez, I hope they put the Plastic Surgeon on it ASAP! I would have never thought about implants interfering with an MRI.

God must have a plan, and maybe he's delaying the scan to give your Tykerb/Herceptin a little longer to work?

I am saying a little prayer for you.

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WOW, KS -
In all my years of breast cancer support I have never heard of MRI-unfriendly expanders. And know several women who got new boobs via expanders who developed brain mets. Perhaps there is some diferent material in yours?

I think it would be important to list a warning here for that particular kind.

On to your other status. I will pray for you to be on a different procedure suite table ASAP.

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Well crap on a crap stick! And, as NEDenise says, can't we ever get a break? It's always some thing! I think we must be the most resilient peope on earth. I love how you were able to tell your travails with such good attitude. But this situation needs some serious resolution.
Kep the faith

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Lol, crap on a crap stick...that sounds like the luck I would have KS ESP the part it's raining, and my remote won't work! Learn something new everyday maybe it's time because you are going to live a long time that you got your real implants put in! The MRI was just a rouse it is all about getting the real breasts!

Make sure you post back when you find out your plan of action!

Oh and if you need a new remote and not just a battery when I replaced mine it was a brand new one on eBay for $20 bucks vs $70 bucks from the dealer. Then when it came in the dealer programmed it for me for free. :).

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Re: Brain MRI this morning
 

Just to clarify and expand (pun intended) on the issue of expanders versus implants and MRI-- Many of the expanders have special filling ports that are metallic so they are easy to detect (you would not want them missing and accidentally sticking a needle in the sack rather than the filling port) and would be heated by an MRI. Metals and MRI are not a good thing, which is why they ask if and where you have any metal parts. KS gals problem is probably unique because she never received actual implants. The final implants do not usually have metal ports--only expanders have ports.

KS gal, my prayers are with you that the MRI will be good once you get the expander removed....or maybe you should think or discuss with the plastic surgeon just finishing the reconstruction. The inconvenience of having the expander removed might be similar to just putting in an implant.

Of course, as my dad use to say, I am talking through my hat as I am flat chested no reconstruction, as I found I was stage 4 before I had my mastectomy,and like you at the time thought why bother....10 years latter I still often wonder if I did not second guess myself and consider going in for that reconstruction after all. Wishing you good scans.

All the best

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I am tired just reading that. I don't know if I could laughed until maybe tonight so I give you credit for putting it all in perspective. Like Denise said it is very unlikely things would go haywire in such a short time though I understand the fear and have felt it too. Praying for smooth times for you in these next steps as it sounds like you've have your share of missteps and deserve some easy times and good news.
Hugs, Cathy

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I told my husband your story. He wants to know why they can't just stick your head in the machine??!! Lol He kinda has a point
Keep the faith

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Denise..my last scan was three months ago...Im just hoping it doesn't take months to get this all fixed where I CAN have a scan. I hate not knowing what those little creepers are doing up there.
Bonnie, my Mom said the exact same thing. "Well, stop letting them stick your chest in there! It's a brain scan, not a foob scan". Foob is for fake boob. In fact, for the rest of the day she called me "doughnut foob". I asked my radiation oncologist about open MRI and if there was an MRI machine that could just do my head and not my chest...and apparently neither is an option. So tell your husband he should get to designing one post haste! lol Could be a lot of money in that. :)
No-one called me back today, so I will be on the phone bright and early calling the plastic surgeons office. I have an appointment with with medical oncologist tomorrow and herceptin as well. Hopefully this visit is less frustrating than the last!

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Oh my goodness, what a day! I hope you get this all straightened out soon. Meanwhile, I'll pray for a silver lining - that having the expanders out will give you more comfort and that those pesky brain mets retreat while you wait.

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The manufacturer of the expanders should have informed the surgeon about this. It is a real common issue. The good news is that the growth in the brain should not be an issue if there is a three week delay. The second good part is there appears to be new methods to handle brain issues. There is an Intrathecal Perjeta clinical trial with multiple sites if the Gamma knife does not whack a mole them dead. Worry, but not too much. Keep on going as the "Luck Balance" has to swing back your way.

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holy crap! what a TRIP. thank god you noticed the donuts, is all i can say. you've been through enough without internal donut burning. i don't blame you for being scared of the time wasting that will now go on and what the hell was that plastic surgeon thinking??? ugh. i hope you can get this resolved quickly. i am glad you could laugh at the situation because laughter seriously is the best medicine and keeps you sane. looking forward to hearing that you've gotten the MRI and you're stable! v

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Ohhh Myyyy dearest ksGal!! Your "mess" has a great "Message!!"
I do hope your writing a journal...or something...what will this "chapter" be called?? :)
Know you are in my prayers...God is most certainly in ALL OF THIS!!

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What a day! At least you can laugh a bit. I would have totally freaked out - find me an ativan :-).
Interesting thing is - I was scheduled for an MRI for a 3 year back issue, told the lab I had a port and tissue expanders, no red flag. Then I thought to call my ps' office and they told me to definitely NOT have an MRI until the tissue expanders are out. Mine use magnets (metal) to find the fill hole as obviously your do. Would have been a big mess - to put it mildly.

KK1 has a point - it's still surgery to take the expanders out; you should look into implants. Can't believe you've had expanders all this time. I can't wait to get rid of mine and get this elephant off my chest.

Best,
Janis

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Wow, what an ordeal!! I believe I was told in advance that I could not do a brain MRI with my expanders in. I think they have some metal in them.

If you are going to have surgery to remove the expanders anyhow, why not put in implants? They probably could give you a big fill now that would do the trick. (I think I only had one or two fills before my exchange surgery.)

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Same thing happend to me last year in June when i went for my 1st brain MRI.. As soon as my chest was in the tube, i could feel my expanders getting tighter so i told the tech who stopped the procedure right away. I too, had to delay reconstruction due to diseases progression to skin. So the metal part which your plastic surgeon uses to locate the spot to expand your expanders reacts to the magnet of the tube.

Instead i had a brain CT. It is not as accurate as an MRI but was better than nothing i thought. If you are on tykerb and herceptin only, your counts should be fine for expander removal or replacement. Best wishes for you !

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Im so glad that someone else had this experience too, makes me feel less like a freak.
I just think the weird thing is...I've already had four brain MRIs with these expanders in. Ive always told them I had the little BB type things in my expanders, and they always said no issue. Well, I haven't always told them, once I was unconscious.
Anyway, onward and upward. Talking to the plastic surgeon in the morning, who was going to go over his surgical schedule. Definitely going to try for little implants, since I only had two fills in my expanders. They are roughly half the size of my original breasts, but I am so totally fine with that.

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Just a quick update....Went to consult with the plastic surgeon at his office. He put a double fill in the both sides of the expander, which has made me totally miserable, and scheduled me for surgery to put in the permanent implants on Tuesday. Im happy that he worked me in so quickly, and I should be able to get a brain MRI in the next week or so. The double fill actually has made me quite uncomfortable. Can't sleep very well. My skin itches a LOT and my whole chest just hurts in general. Will be glad to get these out of there!

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Thanks for your update! Glad to hear your plastic surgeon is taking care of you...sorry your feeling uncomfortable...yet knowing you will soon be able to have your MRI is very good news...especially with no DONUTS!!!

Will be sending prayers your way!! :)

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I think I'm laughing here . . . you are worried about your brain, and the plastic surgeon puts in a double fill - talk about priorities!

The brain may be broken, but the breasts are looking good, real good!

I so hope that your brain has gotten to NED, and with the implants in it could become quite the celebration.

Good luck!

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Reading this with my jaw dropped! Unbelievable!!! You have my respect for how you're handling all this. Hope you get your scan so you can have that worry put to bed. Praying for you! You're so amazing!

-Julie

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Yikes!
Do you have pain meds for the chest discomfort?
Don't be shy! Take them!

You are definitely a she-ro these days!!
Sending prayers for your comfort and peace of mind!
Along with a big cyber-hug...
Denise

Re: Brain MRI this morning
 

Thank you, ladies, for all the warm wishes and kind thoughts.

I went into the plastic surgeons office saying I didn't care what my chest looked like..just get the expanders out and put in whatever fits in there! He said he wanted to use a certain size implant, and I needed a fill to be able to get it in there. I thought...whatever..just hurry up! He told me he was putting 60 ml in each, but ended up putting 120. They look ridiculous...all up around my neck practically and hard as a ROCK. The part that is hurting me is the part that kind of goes into the armpit. Also, because its under the muscle, muscle cramps in the breast. Woot!
I can't wait until the surgery to get those damn things out of there. And Denise, yes, Im popping Vicodin at least twice a day. It's the only thing that works!
Prayers and positive energy all around. Big hugs! I'll let everyone know when the brain MRI is...hopefully those two little buggers are gone!!!

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Had my surgery yesterday and everything went fine, thank God. Quite a bit of pain just under the bottom of the implants where they put some stitched into my muscle, but all in all feeling pretty well. Being doped up on Percocet certainly isn't hurting me any.
Today Im headed off for my Herceptin, and then going by the plastic surgeon's office so he can check out the incisions. Going to stop by the radiation oncologist to schedule the brain MRI, and with any kind of luck I won't have another doctors appointments for a few weeks. However, if the brain scan is worse than last time...we start Cyberknife. Thank you again for the prayers and well wishes. Im sure sending prayers for each and every one of you.

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KsGal,

Thanks for the update. I'm so glad you have gotten the new implants in. No more breast Donuts for you!

You will want to massage the pectoral muscles if they are being so stretched you might have contractions in muscles fibers that pull at the attachments at the sternum, clavicle and upper arm. Fish around for anything that feels like a half cooked macaroni or a pea. Compress for 30 to 60 seconds. If the pain gets worse just lighten the pressure. Or you can stroke across it to get more circulation into the fiber. The pain should stop when the fiber releases.

Or visit a massage therapist that knows Neuromuscular therapy. After all you've experienced you deserve a massage!

I can't imagine bad news about the brain MRI. You have prayers for a good results. May God bless you and heal you from metastasis.