Calling all TNs

jenjenl

Fierce - LOL, I hear ya.  Happy 4th my friend!

Meadow

((Mags))

Yes Bluebird, your Mr. Bluebird sounds like he is an amazing man and I am so very thankful he is right there with you. I have a Mr Meadow who is the exact same way thank God. He sure is a blessing.

Allydp

Thanks so much, ladies! I placed the order for the angel wings this morning. I'm looking forward to giving them out.

Mags, I will be thinking of you and sending prayers that it's nothing more than scar tissue. Hugs. 

TifJ

Just got home from the old 6 month oncology check-up. Everything is looking good! I was a little worried about some pain in my inner thigh and hip area, but the Dr. is sure it is muscular, not bone related. He said the difference is bone metastasis would hurt when weight is placed on the bone such as standing or even sitting. Mine only hurts when I move my leg a certain way. He said when I hit 5 years next year I can choose if I want to "fire" him or keep coming in yearly! Guess I'll cross that bridge when I get to it!

Happy 4th everyone!

 

 

Meadow

TifJ that is aweome!

simplelife4real

Yea Tif!  Congratulations on another good checkup!  That is good info to know about the difference between muscle pain and bone mets too.  Thanks for sharing it.

Hugs,

Kay

simplelife4real

Here's another study that looks promising for TNBC... Just thought I would share it.

University of Chicago Study

Radical2Squared

Thank you Simple! I love seeing these studies! I just love that they're paying attention to us!

slv58

Tif congrats-that is great! Also very useful information about bone/muscle pain, thank you!

Ladies I need some emotional courage. When I went for my one year mammo and check up with mo, I asked her how long chemo brain lasts. She asked me what symptoms I was having and I explained the usual forgetfulness but also mentioned my frustration (and embarrassment) at using the wrong words sometimes. Well she didn't like that and I have to go for a brain MRI on tues. I've never had one so I guess it's good she is checking, but I'm nervous. I'm afraid of the implication and a bit nervous about the procedure. 

Happy 4th of July to my American sisters! Celebrate, life is great!

simplelife4real

Oh Shari, I'm so sorry you are having to deal with a brain MRI.  Scary stuff!  I am wishing the best for you .... wear big pockets so we can all hop in and support you on Monday.  I hope that they are able to give you the results immediately afterward and that you will be dancing with Ned on Monday evening.  (((hugs)))

slv58

thanks Simple, I'll be wearing huge pockets! Test is on Tuesday night and I'm almost certain I won't get results until my MO gets them. I'll ask how long I have to wait, just to prepare. I thought I was holding it together but as the date gets closer, I'm getting more nervous. 

To anyone who has had an MRI, are there any tips you can share? I've been prescribed Ativan to take prior, but I do get claustrophobic and hope I don't freak out. Honestly, I just want to hear that I dont have brain mets. 

Radical2Squared

Slv58....no personal experience, but my mother has had MANY brain mri' s. She is very claustrophobic but she manages. Just make sure they know and they will take very good care of you!

Wishing you the best!

Meadow

Slv,  I ALWAYS take my own wash cloth with me, and fold it over my eyes before I am placed it the tube.......dry not wet. It keeps me from opening my eyes, and if my eyes are shut, I do not get claustrophobic at all. It really works!

Stupidboob

Thank you for the support...................:)

Here is a website I ran across tonight and thought it might help someone.   It is to get free stuff and or low cost relating to breast cancer.  I know many can not afford things, I wish I would have known about this site.

http://breastcancerfreebies.com/

Stupidboob

slv58 best of luck to you....................I do not do well in MRI's so I can't offer any advice except for the wash cloth over the eyes makes me more nervous because if you want to move it you can't.   However, if it is just for the brain, see if they will let you take one with you and hold in your hands.   I was having a different test and the man actually gave me a rag to hold on too because so many of his patients said it helped them.   It did help me but this was not in an MRI

Stupidboob

TifJ congrats................good to know about the bone pain

Stupidboob

Mags I hate that you are going through this....................it just sucks all the way around.

I know what you mean by wanting your mommy.................I MISS mine so much.  Mama's just seem to be able to make things easier.

CanuckMom

Hi ladies,

I saw some of your posts regarding removing the uterus. Does anyone know if uterine cancer and breast cancer are linked?  In the last 2 weeks I learned that both my great grandmother and a first cousin had uterine cancer....before this I had no knowledge of breast related cancer in my family.  I hope you don't mind my joining on this thread...Simple, I was encouraged by the post you made in regards to a virus being a potential cure -hoping my daughter never has to deal with this. Thanks in advance.

slv58

Meadow, Stupidboob and Simple thanks for the tips. Hopefully the test will fly by and I won't have an itchy nose! I will bring a washcloth for both eyes and hands and do some meditative breathing. Sometimes I'm so sick of all this.

Radical2Squared

Canuck,

There is a small link in bc and uterine cancer for BRCA positive gals. The main risk is the link between bc and ovarian cancer. Honestly, in BRCA gals, the risk for all cancers goes up, some are just increased more than others. 

I'm not sure if you've done it yet, but if you're finding several "female cancers" in your family line, you may want to investigate the BRCA testing for you and/or your daughter.

Lookingforward66

Slv58.   I know the anxiety your experiencing. I am going for CT of brain on Wednesday morning. MRI out as can't take contrast. Was told next best was CT. 

Have had a 7 week headache. Nausea,  slight weakness on left side.  I'm praying for acute sinusitis. 

My case is a mess as my allergies prohibit a lot of options. 

The anxiety is worse than the test for me. I'll have to practice my yoga breathing. The not moving the head is scary. 

I'm in your pocket Tuesday evening. 

Marsha

Nettie1964

I.had open air mri...I was still claustrophobic. I'm very claustrophobic don't even like elevators. But I was able to power thru. But I would never go in the tube. NEVER but that's me.

slv58

Marsha, thanks for your support, wishing you the very best also. I've also been experiencing slight dizziness ( more an off balance sensation) and sinus issues-but I think that's allergies. I hope.

Nettie and a Radical I thank you for replies. This makes me feel less alone as if everyone rooting for me gives me strength! I'm not sure if they have "open " MRI at my hospital, but I will ask. 

Positive wishes for everyone!

Cocker_Spaniel

Bluebird like you I love birds.  You will remember the film "The Birds" by Alfred Hitchcock and Tippy Hedren, well when I get home from work there are hundred's of birds just sitting waiting for their daily bread.  They completely cover my washing line and the trees surrounding my home is absolutely full of them.  It is just like that film and if I didn't know they were waiting for their  meal from me it would be quite still and eeriel.  When I moved in I started throwing them a few slice of bread,  now I have to buy a whole loaf every day.  They are just lovely but I'm so glad my cat is getting to old to bother them now.  I'm not sure if you have Tui's in America but their singing wakes me every morning and it's beautiful.

I glad that you still enjoy the earthquakes.  Thank God cancer didn't take everything away from us. 

Mags, Syl58 and lookingfw, my heart goes out to you all.  I can feel your anxiety and hope that everything goes well for you.  I am holding your hands all the way and hoping for good news. Cancer sux big time.

CanuckMom  welcome. We certainly don't mind you being here but sorry you have to be.    

Tif absolutely great news.   

   
Sending everyone big warm hugs for a good day.

CanuckMom

Thanks Radical - I will ask my oncologist for the genetic testing.

Cocker_spaniel, thanks for the welcome.  It's nice to talk to others in our situation.

Slv58, lookingforward, hoping for clear scans for you both....sending positive thoughts.

Spica16

Hi Shari ~ I've had MS for over 11 years now...so that means I have a lot of MRI experience! 

As others have recommended, putting a washcloth over your eyes is a really good way to help with claustrophobia. It helps to keep your eyes closed, and if you do open them, you will only see the cloth and the diffused light inside the tube. This trick has helped me get through my many, many MRIs. A lighter colored cloth is probably better than a dark one.

What I have learned to do is to look up at the ceiling of the MRI machine room just before you put the washcloth over your eyes. That room always has a high ceiling, due to the size of the machine and the air flow needed to keep it cool. By looking at that high ceiling, you can keep that vision in your mind, and not the tube. Sounds silly, I know, but it works! (Mind over matter!)

There is a fan inside the tube. You can ask for it to be high or low. You can also ask to be covered with a blanket, if you get chilled easily. They will have you change into appropriate apparel, usually scrubs, for the procedure. Some places will let you wear your own pants - if they have absolutely NO metal zippers, eyelets, grommets, whatever. Bras have metal, so you can't wear them. You can usually wear your own socks, or they will have the socks with the grippy nubbins on the soles for you to wear. Take off all jewelry, including piercings. The MRI machine has a very strong magnet, so anything metal could cause serious damage to you and the machine. 

The techs will have you lay down on the machine's narrow table. They will put a wedge under your knees to keep your back flat and comfortable. For a brain MRI, they will put a plastic cage over your head to prevent movement. It sounds creepy, but if you put on your washcloth first, it's not so bad. The techs will put padding around your face for comfort. Before the cage, you will be given earplugs, usually the squishy foam kinds. The machine gets pretty noisy, so these really help. When you are settled and comfy, the table moves you into the tube.

Unfortunately, you can't wear headphones during a brain MRI, unlike for other scans. Music helps to pass the time. The good thing is a brain MRI isn't long, about 20 mins. If your doctor has requested "with contrast", you will be rolled out of the machine and contrast fluid will be injected into your IV port. The IV port is put in by a nurse before you go into the MRI room. The contrast "lights up" any active inflammation in brain tissue. Often the doc will order "with/without contrast" so that the two can be compared. The techs will take only a few scans with contrast. Figure on 20-30 mins for the imaging procedure.

Try not to move! Movement causes fuzzy images, and longer time spent trying to get a good image. If you have contrast, the tech will tell you to keep your head in the same position when they roll you out and back in, and during the next scans because they need to match the non-contrast images as closely as possible. 

They will give you a squeeze bulb on a long rubber tube to hold during the procedure, with instructions to squeeze if you have a problem. You will actually hold only the rubber tube. The techs will be checking on you through an intercom within the machine tube. No one is in the MRI machine room during the imaging - the techs are in another room, with control panels and monitors, behind a large glass window. They will ask you how you are doing, and will tell you how many minutes (yes, minutes!) each imaging session will be. 

If you are very anxious about all this, you can be given something to calm you. Some people fall asleep, and that sounds great, but snoring or movement can really mess up the images. Take the smallest amount that you can get by on. 

The MRI machine uses magnetic fields to produce the images. I think it has something to do with water molecules in the tissue. There is NO radiation involved, such as in xrays and CT scans. Once in the machine tube, you will hear the fan and the machine motor. Then the tech will talk to you over the intercom. After he/she tells you how long the next imaging will be, you will hear the machine whirring, and then there will be loud bursts of noise, in certain patterns for each type of image they are getting. The machine takes images in "slices". It can take them side to side, top to bottom, front to back - as it moves along slice by slice. There is no movement of the machine. Sometimes you can feel heat moving on the table beneath the area being scanned. I have never felt it on a brain scan, but have with spine scans.

How fast the images can be read depends on the facility. Sometimes they are read, dictated and typed the same day. Most modern facilities send them electronically to your oncologist's computer. Other smaller places may not have this capability, so it may take days until your doc has the final report. Imaging centers will often mail the patient a CD with the images and report, if requested. Be aware, the images can be hard to decipher to the untrained eye. 

I hope this helps you to prepare yourself for your first MRI. If you have any questions, feel free to ask or PM me. 

Think lovely thoughts!  ~ Shar  (in Ontario, Oregon!)

P.S. Ask all those ladies in your pockets to be very still during the scans!!!

slv58

Shar, thank you so much for that very detailed description! I really appreciate the effort you put into that to help me prepare and understand what it will be like. I was going to wear a small "blindfold-for lack of a better description- that is like a small pillow filled with lavender, but now I'm guessing that it may not fit under the plastic cage? I'm also wondering why a light coloured washcloth would be preferable? I only have dark ones lol. In situations where you have to stay still, I always worry about getting an itch! I guess that's where meditative breathing will help. I wish I could listen to my verbal guided meditation for that, but I often fall asleep when I do. My MO has ordered with contrast, so I have to prepare for an IV- which I hate as I have terrible veins, but will do what I have to-I'm in fighting mode again. 

Ok Ladies, no jokes being whispered in my pockets!

simplelife4real

Shar, that was a great description of a brain MRI.  Thank you so much.  I will remember all that in case I every need one.

Marsha and Shari....we will keep still in your pocket and try not to tickle you.....we will just be praying, sending good woo, calming vibes or whatever it is you need in the moment.

FierceBluebird

cocker, Birds was a great movie!  But i like horror films. Ive always wanted to visit NZ and Australia to see their birds. I dont know if id like having my whole yard covered in them though. LOL

I just had my second brain MRI last week. I do meditative breathing and praying. The ativan will help. Your whole body is not inside the tube so that might help claustrophobic issues. I also keep my eyes shut and they tuck soft pillows around to keep you still. I try to pretend I'm lying in bed. (With really loud bad electronic music playing! )  ha

Spica16

You are very welcome, Shari. 

I should have said that I like a lighter cloth so that I can see diffused light through it - I think darkness would make me more anxious. If you are used to wearing a sleeping mask, go with the dark. I would take the lavender mask with you, and ask the techs about using it. As long as it has no metal on/in it, they shouldn't care. They will know if it will fit. The cage isn't over your face, just across  the forehead and sides. It snaps into the table. If you are using the lavender sachet for calming/relaxing at home, I would definitely take it - nothing better than a familiar friend! 

Take your music and ask the techs if it is possible to listen to it. They may have a way to pipe it in, maybe over the intercom. Just don't have music with words - you don't want to be singing along (especially with that chorus of back-up singers in your pockets. Next thing you know, they'll start dancing and snapping their fingers!!! Sorry, but an Elvis movie is on right now...and they are dancing and...well, you know). 

Keep your breathing steady - no jerky moves. I try to do yoga belly breathing while I'm waiting for them to start, but quickly forget about it and just breathe my normal way. Just breathe! And visualize...watch those "silver clouds" floating by!

Oh yes...the fear of the itch. I suffer dry-mouth from all my MS meds, and always chew gum. Well, not in there! I always fear that little tickle in the throat - you know, the one that only shows up at church, or at a school play, or anywhere quiet where it isn't welcome. Aaarrrggghhh!!! You will be okay. Just don't think about it, 'cause if you do, that little bugger will pop up and torment you! I used to be the "perfect" MRI patient...now I have little MS spasms to worry about. The techs are great - they'll get you through it all.

I have never had problems with the IV. The nurses are well-trained and well-practiced - they will take good care of you. 

You will not receive the report before your MO, and the radiologist will not talk to you either. The imaging center will not give you results. Maybe you can ask your MO to call you with the results? 

By the way, most neurologists don't like open MRIs. They don't feel that the images are clear enough. I don't know about other docs, but neurologists are very persnickety  about imaging. The "open" part is supposed to help patients feel less claustrophobic, but what does it sacrifice? You want good clear images so there is no doubt in diagnosis.

Shari - glad to hear you are back in fighting mode. No Tai Chi in the pockets, Ladies!

We will all be with you on Tuesday (oh no, not another MRI...okay, okay, I'll take one for the team) ~ Shar

P.S. Shari from Ontario - not only am I Shar from Ontario (Oregon), but I am originally from the Detroit, Michigan area...across from Ontario! I wonder if some of my relatives think I live just across "the river"!!!