Terrified

Beachlace
Beachlace Member Posts: 37
edited September 2018 in Colorectal Cancer #1

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

 

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Comments

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    Dear Kelley

    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
    abita Member Posts: 1,109 Member
    I had head congestion while

    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
    Annabelle41415 Member Posts: 6,715 Member
    MRI

    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
    Canadian Sandy Member Posts: 725 Member
    I’m with ya Kelley.....me not

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

  • Beachlace
    Beachlace Member Posts: 37
    Thank you

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

  • abrub
    abrub Member Posts: 2,174 Member
    Handling MRIs

    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
    Twinzma Member Posts: 236 Member
    edited September 2018 #8
    Pet scan

    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
    JanJan63 Member Posts: 2,478
    I hate MRIs. If you get into

    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
    beaumontdave Member Posts: 1,206 Member
    Just offhand, calling the

    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
    Beachlace Member Posts: 37

    Just offhand, calling the

    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

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

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

  • Beachlace
    Beachlace Member Posts: 37
    No news....

    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
    SandiaBuddy Member Posts: 1,256 Member
    Beachlace said:

    No news....

    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

    Anxiety

    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
    Beachlace Member Posts: 37
    edited September 2018 #14

    Anxiety

    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.

    Thats exactly what I did! 

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

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Prayers

    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
    betula Member Posts: 86
    MRI

    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!

     

  • Abk
    Abk Member Posts: 11
    edited September 2018 #17
    anxiety and scans

    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
    Trubrit Member Posts: 5,625 Member
    Abk said:

    anxiety and scans

    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

    Great advice, Alison

    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

  • Mikenh
    Mikenh Member Posts: 777
    My surgeon always wants an

    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.

  • abrub
    abrub Member Posts: 2,174 Member
    betula said:

    MRI

    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!

     

    just had my MRI

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

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    PET scans

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