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Terrified

Beachlace's picture
Beachlace
Posts: 35
Joined: May 2013

Hello all~  In 2013, I had a colon resection for a cancerous tumor and had 9 lymph nodes removed.  One of those was infected so I did 6 months of Xeloda.  Tried Oxaliplatin but had a bad reaction after the first infusion so just stayed with the Xeloda pills.  

Since then, Ive had ct with contrast, blood tests and colonoscopies each year.  This was my 5th year.  I get my scan reports online.  My ct scan report said "Liver: There is new hypodense nodular focus in the anterior left hepatic lobe just medial to the falciform ligament. The area measures around 2.4 cm. Although this may represent developing focal fatty infiltration, follow-up pre-/post contrast enhanced abdominal MRI to clarify and rule out mass is recommended. "   

Does that sound like a met?    I havent been able to reach either my surgeon (left message and was told he would call me) or my oncologist.  My oncologist is on vacation and Im waiting to hear from a colleague. The surgeons office sent a script at my request to have the MRI but I couldn't do it. I tried, really tried but  freaked out because Im totally claustrophobic.  I tried to do the open MRI but was panicky as it did not seem "open" to me.  

Is there another test they can do to diagnose the liver issue?  PET scan?  Radioactive something or other?  I got the report Sept 5 and its been a week.  My anxiety is through the roof. Hopefully someone will call me tomorrow.  

Thanks in advance for all help, 

 

Kelley

 

Trubrit's picture
Trubrit
Posts: 4358
Joined: Jan 2013

I am sorry to read your post.   How awful to not be able to speak with your Oncologist and get the information that will either eliviate your fears or confirm the worst. 

I have never had an MRI, but my liver met was found during a PET Scan - not even the CT picked it up, and it was a 2.2 cm tumour.  So, ask about a PET Scan. 

The only thing that helped me bring down the fear a notch or two, was guided imagery. I would do this at night, right after going to bed. I would do it every night.  It doesn't work for everyone, but it worked like a miracle for me.  Even though your fears are normal, you definitely need to bring that stress down, because Cancer feeds off of it. 

I wish you the best. I do so hope you get answers soon.  

Remember we are here for you. 

Tru

abita's picture
abita
Posts: 394
Joined: Dec 2017

I had head congestion while getting my MRI. He had to stop right before the contrast. Once they put the contrast in, he can't stop. I totally understand what you mean about the MRI. The way I got through it was I realized that the holding breath was 20 mississippis. Somehow counting to that each time help me. 

Annabelle41415's picture
Annabelle41415
Posts: 5623
Joined: Feb 2009

MRI's can be difficult for many people, and can become very distressing.  Sometimes they can give you some type of medication to take while you are in there to make you feel more relaxed.  My brother had to do this and they complied.  You might need to talk to your surgeon/doctor in order to get this test done because the MRI will probably show more of what is going on. It's got to be very frustrating with a doctor on vacation and the surgeon not calling back soon enough.  I'm hoping you get the answers you need very soon.  See if they can give you a sedative for the MRI scan.  They should be able to do something to get this test done.

Kim

Canadian Sandy's picture
Canadian Sandy
Posts: 339
Joined: Jul 2016

I’m with ya Kelley.....me not going in either. Pet scan like Tru did sounds okay.

Beachlace's picture
Beachlace
Posts: 35
Joined: May 2013

and God Bless you all.    I will keep you in my prayers.  Please keep me in yours.  I'll keep you updated.  

abrub's picture
abrub
Posts: 1977
Joined: Mar 2010

I,too, am claustrophobic, and have my next MRI this Sunday.  Bring something to cover your eyes, but it doesn't need to be opaque.  A handkerchief or a scarf or eye mask with a drop or two of lavendar is great.    Be sure to cover your eyes BEFORE you try to go into the machine.  (If you don't bring something with you, ask them to cover your eyes.)  Not being able to see the inside of the machine makes a HUGE difference.  I no longer need anti-anxiety meds to go in.  And yes, I've panicked in the past, and had to stop a scan.  Xanax or Valium before is helpful.  I once even brought a stuffed animal in with me to hold during the test (yes - as an adult!)  

Good luck,

Alice

Twinzma
Posts: 109
Joined: Jan 2018

The Pet scan will pick up hotspots of activity. But the MRI with contrast is going to give them a better view of the possible met and they can get accurate measurements. I hate the MRI machines and need to take a valium before I leave and a shot of Ativan when I arrive. Granted though, The MRI's I get are for my brain and neck so I am strapped down with a mask on my face that looks like something they would put on Hanibal Lector. (I have a chari malformation that needs to be monitored). It's explains a lot about me, my brain falling out of my head! LOL. 

Ask for seditives, and have someone drive you. This is the best test for you. My husband had his pet scan last week and now the MRI is Sunday. Fingers crossed that he may be surgical! 

JanJan63's picture
JanJan63
Posts: 1958
Joined: Sep 2014

I hate MRIs. If you get into the slightest wrong position it's a long half hour. I've done that and ten had my arm ache for a couple of days after. Between the two tests they will be able to tell you something, I'd think. I'm hoping for the best!

Jan

beaumontdave's picture
beaumontdave
Posts: 791
Joined: Aug 2013

Just offhand, calling the mass "hypodense" makes it seem unlikely to be a met, unless it's surrounded in fluid. All my mets were eventually charactorized as dense or solid masses. Sounds like they're being cautious, as non-cancerous fatty liver syndrome is on the rise and they want to be sure about it............................................Dave

Beachlace's picture
Beachlace
Posts: 35
Joined: May 2013

I hope so.......Thanks!

Beachlace's picture
Beachlace
Posts: 35
Joined: May 2013

I called the oncologist office today and they said since my surgeon ordered the original ct scan, he should take whatever is the next step.  Ok.  Called the surgeons' office  and told them I have been waiting since tuesday for the Dr to call me back.  They apologized and were sure he would call me today.  Whelp, its 930pm and I guess not.  Im going to return to my life (have been sitting watching the phone for 4 days) for the weekend and on Monday will call again.  I might just ask the staff to call in a script for the PET scan and see if they will do it.  argh.   

 

No news.  Have a good weekend.  You are all in my prayers. 

 

Kelley

SandiaBuddy's picture
SandiaBuddy
Posts: 447
Joined: Apr 2017

It seems like these reports are written with no sense that the consumer will see them.  They write exclusively for the doctors.  There are so many ambiguous terms that I have stopped reading them and just wait for my doctor to interpret the result.  If I were in your shoes I would get out and enjoy the waning days of Summer and try not to think about it till you hear from the doctor.  Best of luck.

Beachlace's picture
Beachlace
Posts: 35
Joined: May 2013

Thats exactly what I did!  Played pickleball in the sun this morning.  Enjoyed the day.  Thanks!

Annabelle41415's picture
Annabelle41415
Posts: 5623
Joined: Feb 2009

You and all this board is in my prayers.  It's actually terrible that you called on Tuesday and still haven't got an answer.  Personally I'd not wait that long.  If my call was made Tuesday morning and I've not heard from them by Wednesday noon I'd call again and then Thursday about 3:00 and Friday morning.  Don't give these doctors a break.  You need and want answers and there is no reason you shouldn't be able to get them.  Wishing you luck on Monday.

Kim

betula's picture
betula
Posts: 71
Joined: Mar 2017

My husband has a hard time with MRI's and he has asked them to give him something to calm him down(valium?) prior so he can do it.  If getting the MRI is important to get definitive answers than maybe ask about that. 

Hoping you get answers soon...waiting is torture!

 

abrub's picture
abrub
Posts: 1977
Joined: Mar 2010

I find that covering my eyes with a handkerchief  makes it much easier for me.  No more ativan needed.

Abk's picture
Abk
Posts: 9
Joined: Aug 2018

Hi! maybe this might be helpful. One thing I've learned is that ativan (just 1/2 of one) makes the anxiety go away and I didn't have any side effects. The other is that one year I had to go for an MRI every 4 months and they let me bring my own music and played it for me, if I asked on their player. My friend gave me something I loved to listen to and I brought it for every session, closed my eyes, and imagined that I could see the notes. I had both abdominal and pelvic scans and was there for over an hour and a half each time, but it helped a lot. I hope this time is easier for yuou since you're familiar with the procedures. The last time I went, I actually fell asleep in the machine.

Fondly, Alison

Trubrit's picture
Trubrit
Posts: 4358
Joined: Jan 2013

I have very special music, and if (hopefully not) I ever have to have another PET scan (or an MRI, which I have never had), I will ask for them to play it. I'll even bring my own music box, if necessary. 

Tru

beaumontdave's picture
beaumontdave
Posts: 791
Joined: Aug 2013

IF I ever have another MRI, I'm taking Pink Floyd with me, specifically "Time", because that song pops in my head when the noise of that machine starts up, every time......................................Dave

 

Annabelle41415's picture
Annabelle41415
Posts: 5623
Joined: Feb 2009

That is good to know.  My last MRI the speakers were broke so it was tough getting through the scan.  I'd be happier if it was my music though.  Glad that you found this out and shared with us because this is very good advice.

Kim

Mikenh's picture
Mikenh
Posts: 773
Joined: Oct 2017

My surgeon always wants an MRI while everyone else seems fine with a CT scan. The MRIs are tough as you're in a dark tube and have to hold your breath many times for a while. My manager won't do one - she's tried to do them and they wind up canceling. I find it stressful but can manage it but could see how challenging it can be mentally and physically. My manager is in great physical shape but claustrophobic. I'm afraid of heights. We all have our little fears.

Annabelle41415's picture
Annabelle41415
Posts: 5623
Joined: Feb 2009

Insurance is very reluctant to give the go ahead on MRI's because they are so much more expensive than CT's so you must have very good insurance.  My insurance wouldn't pay for a lot of stuff they should have.  They usually fight you so I'm glad that you get an MRI cleared.  Insurance now is tough on everyone.

Kim

plsletitrain
Posts: 219
Joined: Jul 2017

I think it can address the issue.  No need to push yourself for an MRI if you can't do it.  

Beachlace's picture
Beachlace
Posts: 35
Joined: May 2013

So far I am waiting to hear if I can do a stand up MRI.  They are more open than the "open" ones.  The radiologist at stand up doesnt think its strong enough to get a good pic but my surgeons PA thinks it might be.  They wont do a PET scan because they are "ruling out a tumor" and if not a tumor, then they will assess if it's a cyst or what.  A PET scan will only give thumbs up or down to cancer with not enough info.  

Stomach in knots while the Stand up MRI folks talking to the PA on the phone.  damn. 

Canadian Sandy's picture
Canadian Sandy
Posts: 339
Joined: Jul 2016

Wishing you luck on that. I once had a stand up thyroid scan, I was fine but a lady tech was not very happy with me. haha

Beachlace's picture
Beachlace
Posts: 35
Joined: May 2013

Update****   Ive been approved for teh stand up MRI.  Its a weaker magnet so the scan will take 1hr 45 mins - 2 hr.  They couldnt give me an appt until Oct. 23  Soooooo I have an appt this morning for the open MRI again.  If I cant get through it, at least I know I have the other one scheduled. 

Taking Xanax and my sister with me to sit with me.  Praying I get this done......

Beachlace's picture
Beachlace
Posts: 35
Joined: May 2013

YESSSSSSS  I was finally able to do the open mri and will cancel my appt for the standup.  Xanax, my sister and God (not in that order lol) got me through.   Im sooooo relieved.  Now I wait for the results.  Should come either tonight or tomorrow.  They post them on the patient portal.  

 

Still praying..........

Betsydoglover's picture
Betsydoglover
Posts: 1244
Joined: Jul 2005

I am chaustrophobic,  MRI's are intolerable withought a sedative.  I've tried "open MRI's" and they were not open enough for me.  However, my last MRI was at a facility that has a "wide open MRI".  Way less confined than a CT or PET or a so-called open MRI.  Check around to find a facility that has one of those.

 

Take care,

Betsy

beaumontdave's picture
beaumontdave
Posts: 791
Joined: Aug 2013

The only way my wife would do an MRI was with me holding her hand, which meant Iwas bent over at the waist with my arm extended all the way into the machine. Exhausting........................................Dave

Canadian Sandy's picture
Canadian Sandy
Posts: 339
Joined: Jul 2016

Bless you for helping her out.

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