MRI Questions

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runalot08
runalot08 Member Posts: 163
edited June 2014 in IBC (Inflammatory Breast Cancer)

I am waiting on my MRI date.  They are flying me out so I have no idea when it will be.  I am hoping sooo soon.  My problems have been going on since July/Aug.  Saw Dr. on the 10th and my nodes are still up along with a couple new ones fround on my neck. (Other symptoms in other posts.)  Not under the jaw but above the clavicals.  She also mentioned that she now feels some thickening I think it was around the aerola area.  My question is (I tried finding answers in the past threads before posting again.) can the MRI detect IBC?  What are the things that the radiologist usually looks for?  I am so afraid I am going to get someone reading the images who has never seen it before and well might miss it if it is.  I would like to be prepared with ideas that should stand out that I can make sure they are not missing anything.   I do not plan on telling the radiologist what to look for but would like to have good questions to ask after the readings.  Anything that you all may have noticed in your readings that helped with your dx would be great.

Thank you,

Runalot

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  • Squeaker
    Squeaker Member Posts: 87
    edited December 2008
    Runalot08 - My original MRI showed absolutely nothing other than slightly thickened skin, which the radiologist blew off as "bad circulation". (He knows what IBC is now!!)  MRIs are not the general go-to tool for IBC detection. You need a breast surgeon for a core/punch biopsy. That's the best way to confirm any suspicions. Remember, this cancer most often is in sheets of cells, not always a lump.  Ask about any abnormalities the films may show!  Love your lotus blossom!!
    Good Luck!          ~Squeaker
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  • runalot08
    runalot08 Member Posts: 163
    edited December 2008

    Squeaker,

    Thank you.  I guess I wanted to hear the yes it will definitely find IBC answer.  I am very glad to know that it is not the case.  So thickened skin would not necessarily be a sign but could correlate with IBC?  If they see this then I should ask more questions maybe?  Dr told me on Wed that she now felt thickening...new symptom.  I had a negative biopsy about a month ago but still am having problems.  To be honest I was hoping that the MRI would be a Yup or nope answer. 

    Thank you for your comment on my avatar.  It is from some gardens in Japan.  I love the plant life here.

    Runalot

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  • runalot08
    runalot08 Member Posts: 163
    edited December 2008

    BTW did your lymph nodes show with anything?  Was your cancer in the nodes?  I have heard that they light up so to speak if there is.

    Runalot

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  • rosied51
    rosied51 Member Posts: 170
    edited December 2008

    I had my MRI done on Tuesday and now we wait for the results. The Dr I saw is a General surgeon not my choice but my primary wanted a 2nd opinion after I saw the other surgeon. This 2nd surgeon is thinking that in order for it to be IBC you need to have thickening, redness etc. My breast is constantly burning and last night I had such stabbing pains oh my goodness. They put me on Ultram 1x day till I see him on Tuesday. The breast MRI was not comfortable on the sternum and the contrast didn't help much either but if this comes back normal too then I don't know what I am gonna do.

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  • runalot08
    runalot08 Member Posts: 163
    edited December 2008

    Rosie,

    Glad to hear you had the MRI.  Sorry you have to wait so long to hear what it shows.  I really hope it comes back good for you.  I know... then they will have to figure out where the stupid pains are coming from but it is better than the alternative.  I am in your boat along side you.  A lot of our posts and problems are similar.  The MRI for me I think is the last step and if it comes back as normal then I do not know what. 

    What did you not like about the contrast does it give the warm feeling like a CT?  How long did the whole thing take?  They told me about an hour.

    Do you have swollen nodes in your under arm or on your neck?  The Dr. said the other day she was feeling thickening.  I hope that if it is true then it shows up on the MRI and the radiologist can tell me what it is from.

    Part of me wants to find something anything to get on a path to taking care of it.  However,  realistically I do not want anything to show up because of course IBC is so rough.  I read what the women on this board are going through and do and it is heartbreaking and amazing to see how strong they have to be and are.  (I hope that if I ever need to I can model after them.)

    I know that if it comes back for you or anyone that IBC is the culprit the ladies and men on this board are there.  I wish you the best of answers from the MRI and hope to hear from you soon.  I will post as soon as I hear the date for mine as well. 

    Vickie

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  • rosied51
    rosied51 Member Posts: 170
    edited December 2008

    Hi Vickie,

     The contrast gave me the warm feeling but almost nauseating feeling as well. It took about 20 minutes. Last night the pain in the armpits was just palin awful, my husband didn't know what to do to comfort me. I am on Ultram 200 mg 1 x aday but it isn't doing anything for me. I am waiting for the DR to call back to see if I can take anything else but that was hrs ago.I feel like there is swelling in my armpit. I have the redness around the breast and sometimes the pain goes in my collarbone to my neck.

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  • Jadai
    Jadai Member Posts: 182
    edited December 2008

    Hi Roise,

    I have been thinking about you and hope you are doing ok.  Glad you have the ball rolling on this.

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  • runalot08
    runalot08 Member Posts: 163
    edited December 2008

    Rosie,

     I am sorry you are in such pain.  One Dr. started me on Ultram a couple of months ago and it did not do much for me either. (50mg every4-6hrs) I do not think he really thought I was in much pain.Frown        My new Dr. I started seeing eventually put me on Motrin and Vicodin.  She said the Ultram had no anti-inflammatory properties and the Vicodin does.  I think she wants to keep me on them in the hopes that while we wait and see it will eventually reduce the swelling. It has been at least a month since I have been on it and no change.  Now she has me on it strictly for the pain purposes. (I am guessing)  I only take it twice a day because otherwise I would not be able to sleep.  I think that the residual and the 800mg Motrin help keep most the sharp stuff away at night.  I still have break through pain but not as bad as with the Ultram or plain Motrin.

    Maybe your doc can prescribe something a bit stronger for you.  I hope so.  You do not really need to be in that much pain.  Just remember, and you probably know,  it gets harder to sleep for some people if they are taking the narcodics (Me = some people).  Plus as my doc says they are addictive.  That is why she has me on Vicodin instead of somethink like Percocet.  The Vicodine she said is less addictive than the other.  I told her that I do not want to come out of this with  another problem.  So any pain above what my regimine can take care of I am just sucking up.  It is only occasional break through during the day and night is uncomfortable but it is much more comfortable in the day.

    Take care of yourself and keep talking.  I like reading posts.  It makes me feel like I am not the only one fighting to find out what is wrong with my darn miss behaving boob and pit.

    Vickie

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  • rosied51
    rosied51 Member Posts: 170
    edited December 2008

    GM, I am awaiting the results of the MRI in the meantime I am in so much pain in my armpit, breast and now on the right side of my neck lymph nodes area. My armpit hurts so bad and when I called to see if I could increase the ultram the darn dr on call never called me back gonna raise some stink tomorrow.Thr breast is till red as it's ever been and heavy.The area in my armpit seems to be swollen. Not having a good day and it's still early here.

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  • rosied51
    rosied51 Member Posts: 170
    edited December 2008

    The MRI came back normal but I am suffering today as not only the breast burns but also itches. Does the MRI always pick up IBC?Are they missing something, even my husband said they must be missing something this is not normal, even the collarbone is painful, somebody out give me some advice.

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  • runalot08
    runalot08 Member Posts: 163
    edited December 2008

    Rosie,

     I am very glad to hear the MRI came back good. However, I know you are still going through this and no answers.  I have no idea if the MRI always catches IBC or if it is really just an interpretation of the readings?  I do not know if it can be seen is what I am meaning. 

    I know this is probably driving you insane.  On one hand they say you are good to go on the other you are still in pain and have something obviously going on.  Has the Dr. brought up any other suggestions as to what it could be?  Do you have thickening maybe they can do another BX in the thickened area to do one more rule out and make sure?  I have no idea what way to tell you to try to move next.  I just know to say I am sorry and hang in there.  Some one will probably post an idea?

    Don't give up there is a reason.

    Vickie

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited December 2008

    Rosie:

    I'm sorry that you are having trouble getting an answer. I am three years out of treatment at the end of last December we found swollen lymph nodes on the non-cancer side. Besides the nodes being swollen I did have some pain associated with it.  I had two nodes removed for biopsy you may want to request a biopsy on your swollen lymph nodes. 

    Praying that you get an answer soon.

    Hugs

    Laura 

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  • runalot08
    runalot08 Member Posts: 163
    edited December 2008

    Rosie I hope you are doing o.k.?  Any news or direction for you?

    I got my call back for the MRI I have been waiting for for two weeks.  We have it scheduled for 30 December.

    Caseysmom, how did the nodes you mentioned turn out?  Was the IBC back?  Was the pain in your under arm or the neck (both)?

    I mentioned testing the nodes to the DR. awhile ago and she said that they would not know which to test?  I guess because they usually find the sentinal node responsible for the tumor.  With IBC not always having a tumor would that be the reason they would not know which one to test?  I just figured they could test any one that was swollen or enlarged. 

    Hope you both are doing well with the holidays comming.

    Vickie

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  • DianeE
    DianeE Member Posts: 176
    edited December 2008

    Hi everyone,

    Just a note on the MRI.  I too had a bilateral MRI when I was first diagnosed.  The MRI report was bilateral lymph nodes and possible IBC on right and left.  I had no symptoms on the left at all.  The PET/CT was totally negative on the left for nodes or ca.  Had bilateral mastectomy as preventive.  As a side note, the skin biopsy was also negative and I was told that just means they could not prove it by biopsy but it is more of a clinical diagnosis.  That did not help settle my brain at all.

    Hope you are able to rest during all of this scary stuff.  Ask for help with a sleeping aid if you are not.  I will be praying for everyone.

    Diane

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  • runalot08
    runalot08 Member Posts: 163
    edited December 2008

    Diane E

    What did the report say about your lymphnodes?  That they were enlarged or that they were suspicious?  What did they see to determine that it was IBC?  Thickness or a mass?  Do you even have a mass?  So many questions so little time.  I just want to have the best knowledge and chance at making sure my diagnosis is right one way or the other.

    I will be honest my right breast has started hurting some also.  There is no swelling but I do have a couple of enlarged nodes on that side as well. One of which has been enlarged and bieng watched for about a year and a half now.   The pain on the right is occasional and nothing like the left I am hoping to blame that on my period I just finished.  The problems on left (problem child)  have been constant since AUG/SEPT.  I am keeping my fingers crossed that they do not see something on both sides.

    Thank you for all the info Diane

    Vickie

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  • DianeE
    DianeE Member Posts: 176
    edited December 2008

    Vicki,

    My MRI reported that they were enlarged and suspicious on both the left and the right, but only the right turned out to be positive ( I had a 3cm node on the right)  On the MRI they saw skin thickening, but I also had 4 areas of tumor identified that biopsied out at IDC and DCIS.  My diagnosis of IBC came down from a tumor board as it was controversial since the skin biopsy was negative but my symptoms were that of IBC.  This is all very difficult stuff.  I can't remember, are you seeing a breast specialist?  Sorry if you posted that already, chemo brain still raring here!!

    Take care ,

    Diane

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  • runalot08
    runalot08 Member Posts: 163
    edited December 2008

    DianeE,

     No I am not seeing a Breast Specialist.  They do not have any here; however, the doc that I do see is the one that most people request as I think she has the most experience.  I wish there were specialists here and I had the luxury of receiving any test that would help.  I am lucky that they are willing to send me out for my MRI.  There is one other lady here going for one in a while too and we are the first two to be sent to where we are going for the procedure from this area.

    I do not think that my nodes are that big...they are swollen or enlarged but not huge.  At least of what I can feel.  The Dr said she felt thickening but so far I do not have any large palpable masses?  Unless the thickening is considered a mass in IBC. 

    Wow! 4 areas that the MRI caught are you not happy you had it done?  That is a huge save.  Did the mammo see these or are your breasts dense enough that it was not caught? I can't imagine how you must have felt hearing four spots were curious.  I will be alone for the MRI and the results as my family has to stay here.  I think I am doing a pretty good job with realizing it could be good or bad and preparing myself for either.  That's the reason I am asking so many questions.  I just want to get on with my life.  Up until about a month ago I was running 7-13 miles 4-5 days a week building up for my first marathon. (I sucked up the pain) Then they did the big biopsy with stitches.  Said to stay off running for 2 weeks.  Since then the pain has gotten to where I can only run a mile or two before it hurts enough to make me stop.  Now I am totally out of shape and could not go instantly back to the longer miles any way.  Are you active through your chemo or does it totally wipe you out? 

    Vickie

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited December 2008

    Runalot:

    The two nodes that they removed were under my right arm.  I had no swelling of lymph nodes in the neck area.  Prior to surgery I had a pet scan and that came back negative so they just pick two of the nodes.   The pathology did come back negative.  My onc told me that we would be watching them very closely he said that they could possible turn cancerous.  In October I had my tumor makers checked and chest x-ray everything looks great.  I see my onc in January which he will then order my yearly scans.

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  • rosied51
    rosied51 Member Posts: 170
    edited December 2008

    Caseymom,

    You mention about the lymph nodes well for the last 2 days the nodes on my right side of my neck  especially today are quite  bothersome, no sore throat just direct pain as well as the pain in the armpit, think there is any relation? I have a biospy scheduled for tues.Alsoafter dinner I noticed  pain in the kidney are all on the right side nothing on the left.

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  • Jadai
    Jadai Member Posts: 182
    edited December 2008

    Hi Rosie,

    Did you have a biopsy done?  That is what confirmed my mom's IBC.

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited December 2008

    Rosie:

    There is a strong possibility that they are related.  Regarding your kidney you may want to either get a CT scan or MRI of that area to see if there are any stones.  Good Luck on Tuesday.

    Laura

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  • runalot08
    runalot08 Member Posts: 163
    edited December 2008

    Caseysmom,

    I am so glad those nodes came back negative for you!  I am sure you must have been scared.  Thank you and DianeE for all your helpful information and sharing. Laughing

    Rosie I really hope you somehow get to feel better.  So you say your kidney is bothering you too?  I have had some pain in my neck but no kidney pain.  I hope that is a passing thing for you.  Maybe you are coming down with something on top of your other symptoms?  I hope that is all it is.  We have a bug going around here at the schools where I sub.  Friday I ate dinner and then was up with stomach cramps and vomiting all night.  Now I am just with the cramps.  Hope all you have is a bug that might be bothering your kidney area.  Frown  Stick with it and hang in there!

    Nine days and counting till my MRI   Sealed  Can't wait to get some more detail as to what is going on with my boob.

    Vickie

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  • rosied51
    rosied51 Member Posts: 170
    edited December 2008

    well tuesday can't be here any sooner. I just want to have this done and then well we have to wait a week especially with the holidays oh my who knows what New Years is gonna bring?

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  • runalot08
    runalot08 Member Posts: 163
    edited December 2008

    Rosie,

    Tuesday is almost here!  Keep putting your mind at ease that they are moving forward and you will have more information soon.  I am really glad they are finally doing this for you.  Do you celebrate the Christmas Holidays?  I hope what ever you may celebrate it will keep you busy and worrying thoughts at bay.  Easier said than done.  I have made a pact that every time I wonder about my MRI I will also pull up a memory of something really great in my life.  Just to make myself smile.  It does help.   Embarassed

    Vickie

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  • rosied51
    rosied51 Member Posts: 170
    edited December 2008

    Thanks Vickie, Yes we celebrate Christmas and I am trying my darndest not to let it damper my spirits. We will have a white Christmas so that is a plus.

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  • runalot08
    runalot08 Member Posts: 163
    edited December 2008

    Rosie,

    Did you have your biopsy today?  Hope you are feeling well.  A white Christmas would be a treat for me!  I love the snow and mountains.  I am originally from Seattle Wa and it was always white up in the hills at least a couple times a year.  Many years ago I went and married a warm weather boy (he did not see snow till he was 21) and now I can't get back.  Except for vacations.  Let us know how it went and enjoy that white stuff for me.

    Vickie

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  • rosied51
    rosied51 Member Posts: 170
    edited December 2008

    My appt is for 2 pm. I am now concerend about the lymph nodes in my neck as they have become a problem, swelling and painful.

    Hey Vickie, send me your email and I will send you photo of white stuff hubby took this morning,

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  • runalot08
    runalot08 Member Posts: 163
    edited December 2008

    Rosie you are probably post appointment now?  The time difference kills me.

    I would love to see the white stuff.  My parents sent me pictures of their area all white too. 

    If you want to mail me for the picture or to chat it is vickie@talon2.com

    Hope you are feeling good after the biopsy. Let us know what the surgeon said.

    Vickie

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  • rosied51
    rosied51 Member Posts: 170
    edited December 2008

    Vickie, I am gonna send you a pic of the white stuff, it is from rosemary

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  • runalot08
    runalot08 Member Posts: 163
    edited December 2008

    Rosie thank you.  I saw on your other post that things came back negative.  I think that is good but I understand your frustration and the the thoughts of IBC.  I agree with the others that the skin biopsy would be best.  I hope you can get into someone who does not blow you off.  Maybe a cancer center?  The frustration is immense I know.  I am going through much the same cycle as you.  I am not sure if I am in as much pain as you.  It seems to be really bad for you.  I am 24 hours out from my MRI.  You had one of those right?  What did it come back saying?  I am wondering how long it will take to hear back on mine.  I have it tomorrow then it is the holiday then the weekend.  Guess I will have to figure out the bus system here and try to keep my mind off everything.  Let me know what is happening with you.  When is your next Dr visit?

    Vickie

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