Need input on upcoming appointment

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bellesmom
bellesmom Member Posts: 24
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi everyone,

I have posted on here b4 about the possibility of having IBC but not completely sure.  My long awaited appointment with a new breast surgeon is this Thursday.  I still have the swelling, as well as the pink tinged skin at about the 9 o'clock position on my right breast.  Up to this point my mammogram, and various ultrasounds have come back normal.  However, lately my lymph node in my armpit is swollen and tender, and now my right arm is experiencing some tenderness as well.  I am sharing this to get feedback from you all on what questions to ask.  I have been given the run around for so long that I am frustrated and discouraged yet I must be my own advocate when it comes to my health.

What do you recommend as far as questions, tests, etc to ask during this consultation? 

TIA,

Rebecca 

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  • cheers247
    cheers247 Member Posts: 270
    edited June 2009

    Hello Rebecca, I realize you have already been to your appointment at this time, but another test you should ask your doc about is a skin biopsy on the pink area on your breast.  Like Gg08 said, the PET scan will give much needed info, it indentified 3 suspicious nodes for me, and also gave me reassurance that there are no other cancer's other than my IBC.  I hope you get answers soon!  Please keep me posted!  Much Love, Jessica

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited June 2009

    Rebecca:

    How did you appointment go?

    Hugs

    Laura

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  • bellesmom
    bellesmom Member Posts: 24
    edited June 2009

    Hey all,

    Sorry I have not posted anything but there simply is nothing to report as of yet.  I went to the appointment (2nd opinion) and he told me that he was not concerned about my breast nor the redness.  After he examined me, read the reports but did not view the films that I brought to the appointment he is convinced that it is not breast cancer of any type.  Yes I was frustrated in more ways than one.  Instead he focused on the other symptoms like the swollen right armpit lymph node, shoulder pain, intermittent fever/chills and night sweats.  Just last night I was at a friends house and feeling fine then w/o warning starting experiencing vomiting, diarrhea, and chills with night sweats. These type of symptoms cannot be nothing. He is thinking that it may be lymphoma of some kind and sent me for an abdominal CT scan with contrast and chest x-ray.  I will get those results tomorrow at 10 am CA time.  I am so beyond frustrated about being in pain, with a breast that appears to have a bubble in it from time to time and paying for tests that get me absolutely NOWHERE!!!!!!  Sorry for the rant ladies, but in all honesty when I go see him for those results tomorrow, I am prepared for him to say there is nothing wrong.  Then what do I leave it alone, or go back to my PCP that referred me to this particular doc and say now what?  

    Again, sorry for the venting and not getting back to you all sooner, but hopefully the physician will be able to give me some answers.

    You all the best and thanks for thinking about me.

    I'll keep you posted.

    Rebecca 

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  • cheers247
    cheers247 Member Posts: 270
    edited June 2009

    Rebecca, I would keep pushing, get another opinion.  You can schedule an appointment with another Dr. and still see this one to see what he says about the CT.  I'm thinking of you!!  Keep us posted.  Much Love, Jessica

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  • bellesmom
    bellesmom Member Posts: 24
    edited August 2009

    Hey all,

    Sorry I have not come back to update you but I am still in limbo so to speak.  To make a long story short I got the CT scan results back and my chest x-ray was normal.  But my CT scan showed "multiple pericecal lymph nodes and a cyst on my liver."  The physician who ordered it never mentioned these findings except to say the cyst on my liver was no big deal, everyone gets them from time to time.  So I sent a note to my PCP along with the test results and I am going back to the first physician I saw.  I know complicated trying to keep up with it all.  I still have the swollen armpit lymph node that I believe is getting larger 'cause my hubby says he can see it under the skin.  My hubby will b going with this upcoming Friday to my appointment and he has said he will demand a biopsy no more waiting 6 months.  I do have a ? though, and that is is it possible for bc to start in a lymph node w/o a "lump" in the actual breast.  My physician I will b seeing on Friday has said that bc does not hurt and this is really nothing to worry about.  Yeah whatever!  My PCP has said that if he refuses to do a biopsy she will be sending me to Stanford and may do so regardless of what happens on 8/29.  I do have another ? and that is would u mention the CT scan results to this doctor even though another doc ordered the test due to the fact he was a second opinion?  If so how would u bring it up?  I am caught in the middle and I am not to enjoy drama in any way but this is my health we r talking about.  Any advice or input would be greatly appreciated.

    TIA,

    Rebecca 

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited August 2009

    Rebecca:

    The first question is a hard one to answer. My opinion is since IBC is such a rare type of bc and there are so many doctors that have never heard of or seen IBC and by the time a biopsy is done I think it would be possible for it to show up in the lymph nodes. 

    Regarding bring up the results of the CT scan that a second opinion doctor ordered.   I would tell him/her that I had a second opinion and that this doctor requested a CT scan and this is what was found on it.  What is your opinion on it if this follow up doc has a fit that you had a second opinion I would walk away from that doctor. 

    I hope this helps.

    Hugs

    Laura 

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  • bellesmom
    bellesmom Member Posts: 24
    edited August 2009

    Hi Laura,

    Thank you for responding.  I have no idea on what to make of the CT scan results and I believe that he may be upset and if he is so be it.  The hardest part about all of this is to not be taken seriously and no one attempting to give me a straight answer.  The pain in my armpit is something I cannot describe except I feel it all the time, pain radiates down to my elbow and from time to time its as if fire is shooting straight through my breast.  

    I hoping that he will see that I will seek out a second opinion and make the decision to do something and not become upset.  I also think my hubby going with me may make him change his ways as well.  

    Thanks again,

    Rebecca 

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  • stef1066
    stef1066 Member Posts: 6
    edited August 2009

    Rebecca my thoughts are with you for nothig but good luck...I too am playing the waiting game. I have posted on here and also on "not diagnosed but worried"  I have had pain and itching on my right breast for 5 weeks now. I have had mamo...mri...and finally a punch biopsy on Friday. My breast continues to be red, inflamed and very itchy with severe pain around my nipple. I have seen 3 different dr.s and have been told by a breast specialist that it cant be IBC but sent me to a derm who I asked to do a biopsy. He also thinks its a skin issue....but i NEED to know for sure...and so do you. I say if you still dont like what they tell you....go somewhere else. Also I'm glad your hubby is going with you. I hope you get the answers your looking for. I wil find out my results tues. or wed. and will post then. good luck with your appt. will be thinking of you....

    stephanie

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  • bellesmom
    bellesmom Member Posts: 24
    edited August 2009

     Stephanie,

    Please keep me updated on your results and I pray you do not have IBC.  I have an appointment tomorrow and at this point I am just hoping for a biopsy of this swollen lymph node.  I am so tired of being in such pain, not being taken seriously and constantly told see you in 6 months.  I have had lymphoma ruled out via a CT scan which is comforting but still no answers.  If I do not get an answer then I will ask to go to Stanford and see a specialist there.  My PCP has said she will refer me but wants to see what the bs tells me tomorrow.  

    I'll keep you posted on what seems to be a never ending situation.

    Rebecca 

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  • bellesmom
    bellesmom Member Posts: 24
    edited August 2009

    Hi all,

    Well I went for my appointment today and he said he felt a mass in my right armpit which he believes is a swollen lymph node with no cause for concern.  I think he scheduled this upcoming mammogram/ultrasound to appease me not because he feels its necessary.  I asked him why a lymph node would stay swollen for so long and he said sometimes they swell and never go away.  I then proceeded to ask if these tests come back normal then what would occur next.  His reply was I will see you in 6-12 months for a follow up.  R u kidding me?  If he would only take this seriously and not continue to say what it can't be especially considering he has not biopsied it and does not seem like he's going to.  I am frustrated to say the least but I will go to my appointment for the mammo/us next Friday and go from there.  

    TIA,

    Rebecca 

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