Being asked to get an abdominal CT and I'm terrified. :(

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited January 2021

    Great news! I didn't want to say anything before to confuse you, but I've mostly seen NRIs for the brain rather than CT or PET, but I figured some MOs might think differently. And pelvis is usually included on full CTs, or at least on the ones I've had.

  • lexie2002
    lexie2002 Member Posts: 147
    edited February 2021

    Thank you AliceBastable

    Now I need to muster up courage to get a brain MRI

    hugs

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2021

    lexie,

    Great news! I know this is a bit of a misquote but... you don’t have to be brave, you just have to show up!

  • lexie2002
    lexie2002 Member Posts: 147
    edited February 2021

    Thank You exbrn

    ( sorry, don't know why it won't let me spell out your name?) :(

    Anyway, thanks for the sweet response.

    I hope your doing well?

    HUGS,

    Lexie

  • wallycat
    wallycat Member Posts: 3,227
    edited February 2021

    No cancer is the most wonderful sentence in the world, no?

    Diverticulosis is the condition of small pockets in the intestines (common as we age or if aspirin is used a lot); diverticulitis is when any of the pockets becomes inflamed or infected.


  • lexie2002
    lexie2002 Member Posts: 147
    edited February 2021

    Thanks wallycat

    Now if I can just get thru a brain MRI? My doctor is calling me at 4 today and I know she will still want me to do one since they didn't do the head ct. I had a few questions regarding the ct scans and she made a telephone appointment. My headaches, temple aches etc still haven't gone away :( So stressed.

  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited February 2021

    lexie, are you generally OK with MRIs? I've had plenty and I'm totally OK with them (lucky me). I just had a brain MRI mid-January. It was with and without contrast. It did take a while in the machine, but the tech told me that my only job was "not to move". They put this little cage-like thing over my face, but it was not claustrophobic. I did get a little tired being still on the hard table, but overall, it was fine. They gave me headphones (no music) to help deaden the sound.

    Let us know when you get that scheduled.

    (((hugs))) Carol

    (BTW. I grew up in Woodside, CA. My dad is now in Saint Helena (Napa). Loved the Bay Area.)

  • lexie2002
    lexie2002 Member Posts: 147
    edited February 2021

    Sunshine99

    are you talking about an mri or ct? Can I ask if they did it because you were having headaches?

    BTW I love Saint Helena

    HUGS

  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited February 2021

    Hi lexie, my MO ordered the brain MRI because I was having some episodes of severe dizziness. No nausea, thankfully, so it wasn't like vertigo. The MRI showed "nothing of concern" in the brain, but it did show "something of concern" on my C2 (or was it C3? - I don't remember right now).

    I've have a number of MRI exams - mainly because the neuro-ophthalmologist has been following a non-cancer issue with my optic nerve. But, like I said, the last one was ordered by my MO for dizzines.

    All of the CT scans related to my cancer have been ordered for "chest, abdomen, pelvis". I'm guessing that's standard. I have to arrive an hour before the exam and they bring me a bottle of water with the "stuff" in it. It's clear and not chalky. The exam doesn't take super long, but I definitely remember during the first CT exam being SURE that I had peed on myself when they injected the IV contrast. I'm used to it now and don't worry about it. ;)

    Oh, here's another thing. I usually have my CT scan right after they inject me for the nuc med bone scan. A few times ago when I was getting the injection for the nuc med bone scan, the nurse asked it I wanted her to leave the IV line in so that the CT tech could use that and not have to re-stick me for the contrast. I said "Yes, please!" and we've done that ever since. The CT tech appreciates not having to stick me again, and they remove the IV line as soon as they've injected the contrast.

    Easy, peasy - well at least as easy peasy as all this stuff can be!


  • lexie2002
    lexie2002 Member Posts: 147
    edited February 2021

    Hi Sunshine99

    What is C2?

    My doctor tried to get an earlier appointment while I was on the phone with her yesterday. It was for tomorrow at 6:30am and I thought that was a bit early. She went to look for another appointment but I decided on the 6:30am appt. but when she went back it was gone. So now I have to wait until 2/12. Not sure I like waiting that long? I might try and call and see if there's a cancellation even though I really don't want one. :( I just can't imagine what else could be going on???? It's been lasting so long.

    How are you doing with your bones? I hope everything is under control for you. I asked the doctor also if the Ct that showed problems with my L4 and L5 etc. were do to my Arimidex and she said probably. My goodness why can't WE ALL just have no worries for a bit.

    Thanks a bunch for writing to me. I often feel alone in this stupid fight. I know there's alot of women dealing with so many issues regarding cancer but it can still be so lonely.

    Healing Hugs and Prayers,

    Lexie

  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited February 2021

    lexie, C2 is the 2nd cervical vertebrae. I tried to find a good diagram of the spine, but couldn't find one that wasn't fuzzy. I also have mets to L4 and L5, which are the lumbar vertebrae, in addition to mets to my hip, femur and ribs. I manage the discomfort right now with Tylenol PM.

    I'm sorry you have to wait for your scan. At Scripps I can put myself on a waitlist for an earlier appointment. Do you know if you have that option?

    You are right that this can feel lonely.

  • edj3
    edj3 Member Posts: 2,076
    edited February 2021

    lexie, I think I mentioned upthread that I've had several brain MRIs, in fact the last one was just a week ago. I don't find them awful at all, CTs are much harder on me b/c I'm allergic to the contrast dye and have to take all sorts of stuff before the CT which make me super tired and draggy.

    In my case, this last one was to confirm that I don't have anything else that would cause the vertigo and hearing loss. (My ENT had dx'd Meniere's oh probably 6 years ago but I resisted that idea. In face he was correct). Nothing wrong with my brain (and I do have one!) so here's hoping your results are similarly benign.

  • lexie2002
    lexie2002 Member Posts: 147
    edited February 2021

    Good Morning Sunshine,

    Was the area of concern you mentioned ok? I think you said C2. I sure hope so. Your dealing with alot.

    I called Friday to see if I could get earlier appointment. They told me to call back Monday around 9am. I guess this is a time where they have openings? As much as I don't want this brain mri I have to know what's going on?

    Thanks again for writing me. You are very sweet.

    Hugs and Prayers,

    Lexie



  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited February 2021

    Lexie, I don't know yet the details about the C2 area of concern. I have my regular appointment at the end of the month, so I'm sure we'll talk about it. I'm actually not too worried about it. Since I already know that I have mets to other areas, it may just be something that didn't get picked up on the earlier scans.

    My DH is on his way home from St. Helena. Yay! It will be nice to have him back home, but I'm so grateful that he went up to be with my dad for the past week. Sounds like they had some good conversations.

    Hugs and prayers back to you.

    Carol

  • PalBuddy
    PalBuddy Member Posts: 27
    edited February 2021

    So glad to have read this whole thread. You ladies are amazing! And I love the happy ending of the scan results for Lexie!

    I understand the whole fear & zombie thing. Over the last 2 or 3 weeks, the lymph nodes on the side of my lumpectomy breast swelled up. I'm almost 3 years out.) I have a lot of spine & skeleton issues from an old car accident and at first though it was just something slipped out of place somewhere and causing issues. But my usual methods (osteopath, stretches, etc) didn't make it feel any better so I had a feel around under my arm and side of breast. (I don't usually do this because of dense breasts and I can never tell what is what and it just makes me anxious.) Anywho, last week I went and got a manual lymph drainage and that helped some, but my arm is still a little swollen at the inner elbow and it still feels weird in my underarm/breast. Possibly because I'm so anxious about it all I can barely take a full breath. I really wish I could be braver about this. About other things, I'm not such a fearful person - though a worrier - but it's been a rough few years. My sister got diagnosed a few months after me (cervical cancer) and my mother a few weeks after her (pancreatic) and I lost them both, with me by their side, within the year. (And miss them a lot.) Since I was fresh out of surgery and radiation myself at that time, I'm pretty sure I must have some sort of PTSD from it all. And I know the practically paralyzing fear isn't useful at all. (Like, say, fear of COVID is useful because it helps you take precautions not to get it.) But it just comes over me and I'm a wreck. My poor husband doesn't know what to do. Anyway, sorry to jump into the tail end of the Thread...

    (I've made an appointment to get checked out next week. So, it's gonna be a long week...)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2021

    well here's hoping this is not a recurrence for you Pal Buddy. Managing stress and anxiety around recurrence possibilities is such a large part of post cancer life isn't it!.

    Thank goodness you will have some answers soon.

    Be gentle with yourself and let us know how it goes.

    Cyber hug

    Astrid.

  • lexie2002
    lexie2002 Member Posts: 147
    edited February 2021

    Sort of an update? I was waiting for a brain/head mri on 2/12. I even tried to move it up but it wasn't happening In the meantime earlier that week I was literally freaking out because my ears WOULD NOT UNPLUG. I couldn't sleep and I would just walk around the house freaking out. It is like an itch you can't scratch. :( I sent a message to my Oncologist and told her can I take her up on her offer to at least see an ENT while waiting for my mri? She agreed and the next day I saw an ENT. i was hoping it was just ear wax. No such luck. Anyway this lady was very kind. She prescribed a z pal and a medrol dospak. She thought she would try it. She looked in ears, throat and nose. When I left she said she hoped to get to the bottom of what was going on. I told her of my slight on and off headaches and all the mucous I could feel. She told me if I wasn't feeling better she wanted a CT scan on my sinuses. After a few days on the meds I felt slightly better in my ears. When I was done with meds everything was back. So I had the scan and basically she said it was pretty normal except for some right cheek mucous and inflammation. It's a very long story but what I will say is I had missed her call and asked her to call me the next morning. She did and I told her her email ( that night) seemed to write me off so to speak! She apologized and said it was not her intent. She had also wanted a hearing test. I asked her if I should still do the hearing test and she said yes. The part of the hearing test she was most interested in was when the Dr. would blow air into the ear somehow telling them about pressure? After talking I told her it was funny that after taking the pills/ and the steroids I felt slightly better and then back to feeling crazy because of my ears. She had said I wish you had mentioned you felt a slight improvement? She discussed just taking a short dose of prednisone. I started it yesterday. My right ear is feeling slight relief. I have the hearing test this Monday the 22nd. NOTE: I checked with my MO to ask her if I can try these meds etc from ENT and put off Mri for a week. The Ent said I should see improvement in week then do sinus CT if no better. My MO agreed. I couldn't get a new mri in a week but a week and a half.

    Anyway, I am dealing with the plugged ears and slight headaches. My point is I thought all the mucous, ear problems slight headaches were do to sinuses etc. I am still worried about the mri. What I'm saying is if all the sinus stuff is being worked on what is left?? :( Worst scenario is all that's on my mind. I am trying so hard to think positive but I'm falling into a dark place.

    If it's not sinus etc what's left??????

    Hugs,

    Thanks, Lexie


  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2021

    Breathe, Lexie, breathe, though maybe not through your nose! This is quite a coincidence but I am 8 days post surgery for removal of polyps in my maxillary right sinus, and a septoplasty because one of the polyps had grown so large that it was pushing my septum to the left. I have known for some time that I had polyps but theynever bothered me until this past summer. The enormous polyp growth was an incidental find on my annual PET. My ENT used an endoscope to explore the problem in detail (weird to have this tiny camera in the sinuses but not painful) . I did have a sinus infection at the time but antibiotics and a short course of steroids helped temporarily but surgery would still be needed. Due to Covid19, my surgery was postponed twice but I finally had it done and have spent our presidents week break recovering.

    I am not saying this is what is bothering you, but there is a whole lot that can be going on in your nasal passages that could be causing your symptoms and since those structures are so close together they can cause headaches, ear pressure, gum and tooth aches etc. I hope they find the cause soon and don’t think progression!

  • lexie2002
    lexie2002 Member Posts: 147
    edited February 2021

    Hi Exbrnxgrl

    The sinus ct scan didn't show much which was surprising to me. She said it was pretty much normal except those few things that I mentioned. Wouldn't a ct show what's in your nose etc. All I know is I can't live like this. It's so maddening.

    Of course I'm still worried about the brain mri mostly now because if it wasn't my sinuses, sinus infection, etc what else could my headaches being caused by? If these headaches and plugged ears would just go away I would be so happy! I'm shaking just writing this.

    You are so sweet to respond to me again. :)

    Thank you,

    Lexie

  • edj3
    edj3 Member Posts: 2,076
    edited February 2021

    Hi lexie--

    I have Meniere's Disease (NOT fatal, mostly it's a PITA) and the dx is more a process of elimination rather than a test that shows aha you have it!

    Anyway, talk with your ENT and see if she thinks this might be what's going on with you. If it is, I'll say again it's not fatal, just unpleasant.

  • lexie2002
    lexie2002 Member Posts: 147
    edited April 2021

    Hello everyone. This is sort of an update and also asking if anyone has ever experienced what I'm now going thru. My right ear is still clogged and painful and my left ear is slightly clogged. The ENT person I was seeing has said she's pretty much done all the tests and can't see a reason for what's happening. She reached out to my primary care doctor and pretty much asked for her help to maybe calm me down. I don't want to make this too long of a story but the next step was doing a video visit with some sort of behavioral / therapist? She sent me a questionaire on email which I answered. She then talked over the phone and said I hate it when docs have someone say for example shed a tear in their office and instead dealing with it in the moment the doc sends these people to me. I was surprised she owned up to that. I forgot to mention insisting on seeing my primary in her office and she pretty much accused me of this just being stress. She's been my doctor for awhile and I just couldn't believe she said that. This is really ruining my life. I can't go on living in this fog and shooting pain. The ENT mentioned maybe it could have something to do with TMJ?? Anyone out there have TMJ/TMD that affected their ears? Also in the midst of this now I've developed some sort of Acid reflux/gerd/lpr?? It would be much easier to cope with if SOMEONE could at least figure this out!! I keep saying this has to be coming from somewhere. I am truly at my wits end. I cry most nights and envy my husband for being able to sleep. I just go out on the couch 99 per cent of the time.

    Thanks ladies for listening......Appreciate any input ahead of time.

    On 4/28 I'm having an endoscopy. Worried about this too.

  • GiddyupGirl
    GiddyupGirl Member Posts: 240
    edited April 2021

    hi Lexie

    I am sorry for all your discomfort it sucks. I know because my daughter suffers from something similar.. it ended up being Tmj problems. The chiropractor actually really helped her by adjusting her jaw. For myself my right ear is almost always plugged turns out I am grinding my jaw when stresses and with B.C. we are always stressed. The osteopath was a great help. Also using a saline nose spray at night and living on my left side helps. This may not be your solution but there are other not scary options so hang in there

  • lexie2002
    lexie2002 Member Posts: 147
    edited April 2021

    Hi Giddyupgirl,

    Who did your daughter see that told her it might be TMJ? Did she go to a tmj specialist. I wasn't sure if you meant she also saw a chiropractor. What about yourself?? Did a doctor verify you are grinding? Can't you get help? All the research I've been doing says tmj can plug ears and that Using an orthotic would help. I just keep seeing so many different opinions. For me, I've tried Flonase, sudafed, antihistamines, neti pot and on and on and on. I shouldn't have to figure this out! I am so frustrated. After everything I've been thru with breast cancer and then heart failure this is now gonna take me down! I pray every night for relief. I just want my life back.

    Thank you so much for your input. I'll wait for your answers to my couple questions.

    You are so very sweet to share info about you and your daughter.

    I wasn't sure if anyone would see this post. I've been dealing with this since I posted my fear of all these scans I was told to do.

    I have to admit I'm never sure how to make sure people see a new post from me. :(

    Healing Hugs


  • GiddyupGirl
    GiddyupGirl Member Posts: 240
    edited April 2021

    Hey Lexie

    My daughters doctor gave her all the nose sprays and antihistamines but they didn’t really help. She was seeing a chiropractor for her shoulder and mentioned the headaches and ear problems and the chiropractor diagnosed her tmj and treated it. My daughter was so happy to get rid of the discomfort. For me my dentist figured out the grinding I tried a bite plate and it drove me nuts. I have an osteopath who is awesome and she worked on it and gave me some tips and it really helped. Will your doctor give you a tranquilizer for nighttime to help you relax until you get some answers. Take care this will get better

  • lexie2002
    lexie2002 Member Posts: 147
    edited April 2021

    Good Morning GiddyupGirl,

    I've never heard of a bite plate? I've heard of mouth guards and special orthotics made for the individual? HOW ARE YOUR EARS NOW? Anything you can share regarding tips from the Osteopath?

    I have read about a chiropractor helping a bit but it turned out to be temporary for the person I was reading about. Can I ask about the time frame for your daughter. Was this recently?

    I never thought to ask if your on the west coast? I hope my responses aren't getting to you at bad times.

    Again, thank you so much for having a back and forth chat with me. You don't know just how much I appreciate it.

    Hugs,

    Lexie

    PS: Do you know how I can make sure people see my latest post?

  • edj3
    edj3 Member Posts: 2,076
    edited April 2021

    lexie, I have Meniere's Disease which is marked by four symptoms and dx'd by ruling out other causes. The four symptoms are:

    1. Tinnitus
    2. Aural fullness (basically one or both ears feels stuffed, in my case it's my left and it's quite painful)
    3. Vertigo, which is not the same as being dizzy. With vertigo attacks, the world moves and I cannot stand up (I fall down) and I usually end up puking my guts out.
    4. Intermittent low frequency hearing loss (this is not age-related which tends to be high frequency loss)--again, mine is in my left ear. Meneire's-related hearing loss tends to worsen over time so chances are good I'll be deaf in that ear at some point. I wear a hearing aid when it's bad.


    This disease is diagnosed by an ENT; they will order a brain MRI to rule out any tumor in the brain. All four symptoms generally need to be present for the diagnosis.

    I've had the tinnitus, hearing loss and aural fullness for +/- 15 years. The vertigo is more recent for me, it started in 2014 and is a real booger.

    I share this with you just in case you've got more than the aural fullness going on.

  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited April 2021

    Wow, sorry ed. Hope you have a way long time for any hearing loss and no vertigo attacks.

    Seeing the list of symptoms, I wanted to tell lexie what I was feeling like a few months ago and that I believe it is ALL stress/anxiety related. It always starts with the tinnitus. Mostly my right ear but sometimes both. There was some sort of pressure happening in the back of my head, not so much like a headache, but that headache you get from dehydration. Noises were bothering me. Then, a few times I got some food stuck in my esophagus which hurts and you feel like you can't breathe until finally it either goes down or I spit it back up. Usually I have to bring it up because even sipping water would also just sit there stuck. Anyway, I also thought emotionally I'm in a funk and was thinking it was seasonal (end of winter/time change stuff), but I was having a harder and harder time just functioning. Imagine trying to get through your day when your head feels like it might explode?! I called my primary and asked for something. I was given 10mg of fluoxetine and was recently in to see them to check on dosage, etc. I was also told to try Pepcid for the esophagus things. Note to others: If you have GERD and are on the AI she said the prilosec and nexium may interfere, which is why she said Pepcid. Added a pepcid at nighttime. I feel a ton better than I did. Grief, stress, anxiety can very well present with physical symptoms. As you eliminate anything medical as a cause, just wanted you to consider this as a cause as well. Best wishes.


  • lexie2002
    lexie2002 Member Posts: 147
    edited April 2021

    ctmbsikia,

    So what did they say ended up saying was wrong with you? The pressure is now in my left ear. This is absolutely unbearable right now. It was just my right ear.

    I agree stress can make things worse. This is very real and not just in my head. The worst part also is not knowing what is causing this. If no one can figure this out then what do I do, I can not live like this.

    Thank You

  • lexie2002
    lexie2002 Member Posts: 147
    edited April 2021

    Thank you edj3

    I asked her about Meniere's back in February. She said because I had no vertigo problems etc. she ruled that out. I also had to have a brain mri in February to rule out recurrence because of BC. Something HAS to be causing this. I need an answer. :(

    I am so sorry you are having to deal with that disease. :(

    Lexie

  • GiddyupGirl
    GiddyupGirl Member Posts: 240
    edited April 2021

    hi Lexie sorry it took so long to answer, I worked till 8 tonight. It’s just been in this last year. My daughter has had two treatments in the last two months and fingers crossed she is doing well. As for me it is not perfect but lots better. I have some exercises, massage points I do myself and actually heat also helps. How does your neck feel. I am actually in central Canada. Hope you get some relief I know know how much it sucks

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