I'am going CRAZY!!!

Frankie_

I think I'm unreilving...I can't stop crying and shaking. I have not done anything but stare at the phone today.

Rewind...right before my rads were to start my Rad Onc ordered a chest CT Scan (April 9th) and guess what 2 new "questionable" spots on my T5 & T11 (spine) showed uptake that was NOT there on my initial staging scans (see above). These findings were listed as "vague" WTH? So my rads were put on "hold" because my Onc's (Rad & Medical) ordered a bone scan (April 26th) to follow-up with the CT Scan and guess what -CLEAN. So rads were put back on the table (recently completed). On May 3rd when I met with Onc and questioned him about the inconsistencies I was told that we would have to repeat these scans 3-4 months to see if any changes are noted. Plus he said that either one of the tests could have been a "false negative" or a "false positive". I was so frustrated, beaten down because I still had NO conclusive answers where I am I with this fricken disease (meaning...have I progressed?) My Onc's opionion is no and that these new findings are probably degenerative in nature. He thought that I was worrying about nothing. That just didn't sit well with me.

A few weeks ago seeing my Onc I had a discussion with him again (as it has been unsettling). I pressed him to order a (full spine) MRI-which he agreed but also warned me that we may still have inconclusive findings after the MRI. I had the MRI done (July 8th) and called the imaging department (yesterday) to find out if the Radiologist completed the report and to see whether it had been sent to my ONC- same building. I was told yes. So I called his nurse yesterday just prior to his office closing and left a message. Did not hear back from her (understandably-it was towards the end of the day). So I called again right before lunch and the clerk reassured me that his nurse had received my message and that she was in and that she would give her my second message to call me at home with the results. Later, I got a call from the clerk saying that the nurse will call me tomorrow with my results (WTH?) This has gotten me so freaked out! I know that my Onc has many patients and both he and his nurse attend to them and I am only ONE of many patients BUT it only takes 2 minutes to call back (if indeed) the scan is clear. She has always called me back with a brief follow-up call -giving me the clear. Don't they get what kind of emotional stress we go through waiting on results? I can't help but think this is BAD news. My husband gets so upset with my negative thoughts (as he puts it). He says that I need to learn to live with this and that there will be likely many more tests in the future and that I can't keeping falling apart. I know he's right but I am paralized with fear. Fear of shattered dreams, a reoccurence and dying! It is nearing a year (September) and I 'am still in a state of shock or denial??? Somedays are better (where I don't think too much about this disease) and some days are awful like this one. I know that I can come here and share my feelings as you all get it. I am glad I can come here and let my emotions go. Thank you!

pupfoster1

Oh my gosh Frankie,

You could be me posting.  I am so sick of this "f"ing roller coaster and the "not knowings".  It truly plays a head game on you!  I am sorry you are having to go through the waiting game another day.  I don't know but perhaps if they said the nurse would call you it would be good news.  I can't imagine the onc not wanting to tell you if it's something bad.  After all you'd have questions.  So I'd be causiously optimistic if I were you.  It's hard though, and my husband too doesn't quite get it either.  Last time I got freaked out about a test he actually acted a little irritated---wtf---he has been great all the way through, but I think they believe (or wish) that it's over and done now, get on with your life.  And some of that makes sense, but just when you think you can do that you get the rug pulled out from you.  I've got some on going issues to be looked at and had a bad night last night and today.  Just in a bad funk and not feeling good, so of course my mind wanders.  NOT a good thing.

Maybe your Onc will call you tonight after the office closes---if not please hang in there tonight and let us know when you hear something.

(((Hugs))),

Sharon

pupfoster1

Oh my gosh Frankie,

You could be me posting.  I am so sick of this "f"ing roller coaster and the "not knowings".  It truly plays a head game on you!  I am sorry you are having to go through the waiting game another day.  I don't know but perhaps if they said the nurse would call you it would be good news.  I can't imagine the onc not wanting to tell you if it's something bad.  After all you'd have questions.  So I'd be causiously optimistic if I were you.  It's hard though, and my husband too doesn't quite get it either.  Last time I got freaked out about a test he actually acted a little irritated---wtf---he has been great all the way through, but I think they believe (or wish) that it's over and done now, get on with your life.  And some of that makes sense, but just when you think you can do that you get the rug pulled out from you.  I've got some on going issues to be looked at and had a bad night last night and today.  Just in a bad funk and not feeling good, so of course my mind wanders.  NOT a good thing.

Maybe your Onc will call you tonight after the office closes---if not please hang in there tonight and let us know when you hear something.

(((Hugs))),

Sharon

FireKracker

THE WAITING IS THE PITS.I AM GOING CRAZY WITH YOU.AND I THINK MANY OF OUR SISTERS ARE WALKING DOWN THAT ROAD RIGHT NOW AS WE SPEAK....COME ON GIRLS.LETS SHOW FRANKIE SOME SUPPORT HERE.IM KINDA NEW HERE BUT YOU KNOW WHAT WE NEED,, A GROUP HUG.G..TO ALL OF YOU THAT ARE FALLING APART HERE IS A HUGE HUGGGGG.PRAYERS AND BLESSING GOING YOUR WAY.

jenn3

Frankie - I am so sorry you're playing the waiting game, which is miserable.  Our minds can get the best of us and I think it's only natural to think the worst after what we've been through.  I know that I can't make things speed up or make the phone ring, but know that we're all here waiting with you, holding your hands and hugging you.

Pure

i am so sorry your struggline right now.... Prayers are with you and no matter you wil be ok.

SpunkyGirl

(((((Frankie))))))),

You have every right to feel the way you do.  Even though these Oncologists and nurses treat cancer every day, they just don't know what you are going through.  The waiting game is horrendous, and we'll all be thinking about you and praying for great results for you. 

BIG HUGS
Bobbie

lovemyfamilysomuch

Let it out sister!! We care and we understand and we hear you.  xo

Bugs

Oh Frankie, I'm so sorry you are going through this!  I do agree with Sherri, though.  In my experience the nurses make the good phone calls and the docs make the "oh shit" phone calls.  The fact that they didn't call you right away is also a good thing, IMO.

We get it...and will hold your hand through it.

KittyDog

So sorry.  Big (((((HUGS)))))

lexi4

Hey Frankie,

I am sorry that you are on the rollercoaster. I agree that I don't think the nurses deliver the yucky news. Saying a prayer right now for comfort as you wait on results.

Hugs,

Lexi

mnmom

I hear your fears & frustrations. Like so many I have been there. For me it was that they would not get the results from the radiologist promptly, so there was nothing to tell yet.

Thinking the best for you...hang in there ...HUGS

ruthbru

I've often thought that I will drop dead of a heart attack or stroke having tests, waiting for test results, going in for rechecks etc. long before the cancer ever gets me. Hang in there. Not hearing from anybody yet does not mean anything one way or the other (maybe the nurse's kid fell out of a tree and broke his leg and she had to rush home-it does happen). Once you talk to her, ask for a prescription for sleeping pills too. Big Hug! Ruth

3jaysmom

i hear you, honey..they really dont understand, and cant keep track of all their patients. ive seen 3 drs this month, had surgery, and now, tom. a pet scan looking for cancer the previous scan "proved " i did not have..take a deep breathe..truly, breath deeply, and often, it helps the immune and lymphatic system. m sick to death of hearing about "false negsor,false pos".. its infuriating !! here keeping my fingers crossed,and adding prayer..really a misnomer, but rightwitcha sistah..light N love, 3jaysmom

chrishat

hi frankie, i am so so sorry you aren't getting your news right away. it angers me, actually, when we have to wait for results like this.......they MUST have some idea of the emotional stress we go through, waiting. i say, call again in the morning, and tell them you can hold until the doctor or nurse can take your call! i am usually not a pushy person at all but the stress is too much. i had an mri in the spring and my onc had said he would call me on a wed with the results....i called thurs morning, and thurs eve, and left messages...on friday my husband called the office and told them, my wife is sitting shaking and freaking out by the phone...the doctor needs to call her back RIGHT NOW. and he did call right away, apologetic...he had just been busy! i think they need a little reminder every now and then...it's routine for them, but it's our lives!...i'm thinking of you....i sooo get it....please let us know as soon as you know something.

KerryMac

Frankie - I will echo the others - in my experience bad news travels much faster than good. I don't even hear back if my tests are negative - they only call if there is something to follow up on.

So, sit tight. I hope you get good news today! 

littletower

Frankie, I too will repeat what the others have said. It's the Doc who calls and pretty quickly. But the whole thing SUCKS. Big Hugs to you and all fingers (and toes) crossed!

Joviangeldeb

Frankie,  i'm thinking of you, too.  The waiting game is so horrendous on the mind and spirit. (((hug))).

Deb

paml

We are all here for you Frankie! Had a follow up on Monday and the onc. says everything looks great. He did say he was sending off the blood samples for more testing and he wouldn't call if everything looked fine. I am with you girl, every time that phone rings, I jump.  Let us know how things are going. This disease stinks!

FireKracker

sending hugs love and blessings...please keep us posted....as sisters we worry about you..im lifting you up in prayer again..

grdnslve

frankie---having spent my working years in an oncologists office, and now a patient, i can see both sides.  doesn't make it any easier.  but i can say sometimes even finding 2 minutes was more than impossible for the docs.  from the moment they ran in the clinic after doing rounds at the hospital, they were behind, with calls from other docs interrupiting visits with patients, to staff chasing them around the clinc for 'just a quick question', to piles of paperwork to read, sign off on, and yes those calls to return.  everything tries to get prioritized, with the most urgent being delt with first.  they have the nurses return as many calls as they can--and those are the less urgent in terms of bad news to be delt.  the worst cases they try to have the patient come into the clinic for a face to face.

try not to be so frustrated with the test results.  they are not perfect, and have imperfect people trying to interpret them.  any 'uptake' on a test must be reviewed, but there are many things that can cause it, and not necessarily the horrid things we are terrified of.  just as a test can come back 'normal' (as was in my case) and quess what...it wasn't. 

my best advice is to find out how the clinic you go to handles these types of calls.  do they have specific nurses that do patient calls?  if so, learn their names, find one you can bond with, and it may smooth the waters a bit.  if the results are such that she can give them to you without being afraid you are going to fall apart, you may get your answers sooner.  also, i wouldn't bother calling the radiology department.  i would call the nurse-let her know you just had such & such scan & would like the results asap. ask her if it would be more time efficient for you to get an appt to come into the office.  she may be able to squeeze you in.

know you are in our thoughts & prayers for good results.

Pure

Thinking of you today.. We are all here for you no matter what the answer was..

Frankie_

Firstly. I wanna thank each and every one of you for "waiting" with me and for all the positive vibes, thoughts and prayers. It's so comforting knowing that you all care and so supportive. The nurse called this afternoon and said that the 2 spots (T5) 4mm and (T11) showed up on the MRI and the Radiologist report - reads as "concerning for mets. The Nurse said that my Onc wants to met with the Radiologist and review ALL previous scans (CT's and bone scans) and get his thoughts??? The kicker is that my Onc is leaving for a 2 week vacation tomorrow. So I won't be able to meet with him and get a final word if it is mets or not until he comes back meets with Radiologist review all previous scans then meet with me to let me know their thoughts and what the next steps will be. If it is mets then it must be pretty aggressive because it was not seen on initial staging scans in November and I started chemo in Dec 1st and finished in mid March and the CT scan that the 2 spots first appeared in April 9th but bone scan clean April 26. Maybe it was to small to be seen on bone scan and that's why they appeared on MRI and CT scan. That's an aggressive cancer to have progressed throughout treatment. I am so very numb right now! I would think that my Onc might look at biopsy at least that is what I would push for and perhaps a second opinion is in order. So still waiting until it's official!

FireKracker

I SAY SECOND OPINION..WHY WAIT.SECOND OPINIONS USUALLY WORK FAST.MUCH FASTER THEN THE DR.WHO THINKS ALL YOUR FAITH IS IN HIM...JUST MY OPINION..

chrishat

how scary and nervewracking. i wonder if your onc has a partner who is taking his patients while he's out of town? someone you could see sooner than having to wait at least two more weeks.  i know that sometimes spots show up and they don't mean anything bad.i have been warned about this before having mris....that frequently things are there that are not mets but since they show up they have to be investigated further...... it's just that with cancer every spot is scary, and i guess the only way to know for sure is to biopsy? i feel really bad for you having to wonder worry for so long, i hope there is some way to expedite the process. good luck good luck good luck!

Bugs

Oh honey!  So very frustrating and upsetting.  {{hugs}}!  I agree that you don't have to wait for a 2nd opinion.  You do what feels right for you.  We are here with you while you wait and go through this.

grdnslve

i agree with the above.  see if someone else in the practice can see you, or get consult with someone else asap.  the office should set that up for you, you have enough on your plate right now.  hang in there & we will be praying for you.

jenn3

Frankie - Sherri said what I was thinking......CRAP.....there really isn't a better word.  I am so sorry you have to deal with this and wait again for the final word. We're here with you - thinking of you, praying, holding your hands and fighting each other to hug you.

((((HUGS))))

Pure

Just so you know my radiooligst wrote o my report something along the same lines except I think he wrote "could be mets" I didn't even know this was ever written until months later b-c when my oncologist read what the radiologist wrote and she looked at the scans herself she said they were nothing and probably left over from a cold. So there is hope-hang in there.

kimber3006

Frankie - Just checked in tonight to see how you were.  I'm with the others - I couldn't wait for 2 weeks.  I did want to say that one of my husband's coworker's wife had BC years ago and he warned DH from the beginning that the suspicious spots on the scans happened often and were terrifying in the beginning (apparently she gets scanned annually - weird).  Anyway, while we wait, I'll keep on praying. 

Medigal

Frankie, I am so sorry the waiting is making you crazy.  This damnable disease makes most of us crazy!  I can never understand how our Oncs can be so thoughtless not to understand the fears we live with.  My Onc I think would put me in a cage if he could when he has to do tests.  I just keep calling the office and telling them my nerves can't take the wait and I NEED to know the results before they leave that day!  What I have learned from experience is that it seems to be true that "bad news travels fast".  If it is bad they want to contact you, in my opinion, so they can set up the next step or test.  If it isn't bad, they seem to have this crappy attitude that they have all their other patients to take care of and it is no big deal if they make us wait a few days before calling.  I usually call the place where I had the test to see if they sent results to my Onc and if they say "yes" and he should have them, I call his office and insist on getting the results.

So he thinks I am a nutcase.  Who cares!!  He is not the one who has to live with my fears.  I also don't think I would still be surviving if a "caring" doc several years ago had not given me a tranquilizer RX and taught me how to take it without getting addicted to it.  If you don't get your answer soon, you might want to do what I do.  It amazes me how these doctors can be so good at their professions yet so terrible when it comes to understanding the feelings of their patients. You have to confront them and let them know it is too upsetting for you when you have to wait on results.  Being this upset is also not good if you have blood pressure problems.  Best of luck to you and many hugs!