Just a little stressed out

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Caseysmom
Caseysmom Member Posts: 507
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi All!

Just feeling a little stressed out today.  I saw my pcp last Friday for to sores on the left breast that I had ibc in.  Tomorrow morning I am scheduled for a biopsy just freaking out somewhat scared something terrible that the ibc is coming back.

Thanks for listening to me

Laura

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  • lexi4
    lexi4 Member Posts: 1,074
    edited October 2007

    Hi Laura,

    I know how scared you are feeling. I recently went through scare myself and everything was okay. I am hopeful that this isn't a recurrence and perhaps some kind of a reaction to either a bite or a detergent.

    Hugs and Prayers,

    Lexi

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2007

    Oh Laura, I know who scared you much be right now...its good that your appt for biopsy is soon....Im praying with Lexi above that things turn out to be a reaction or something...

    Please let us know and keep posting so you dont feel so alone....

    Hugs

    Jule

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  • kimmie39
    kimmie39 Member Posts: 319
    edited October 2007

    I feel ya !!

    This is my second round with this "*rap"  and if it helps it will get better.

    Last time I went 11 yrs without a reoccurance.

    Unfortunatly Im hard headed and it took 10yrs to stop thinking all my  ails were cancer related.

    Im thinking of you and be waiting to hear the results. 

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited October 2007

    Just wanted to let everyone now that I will be getting my results on Monday.  I will let everyone know what the outcome is.

    The only problem that I have had so far with the biopsy is that the stitches did not hold so I am keeping the area covered with bandages.

    Thanks for all of the support.

    Laura

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  • kimmie39
    kimmie39 Member Posts: 319
    edited November 2007

    Hang in there.

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    Laura,



    A few steri-strips, cut in half, and then attached to one side of the incision, gently pushing the opposite skin edge forward, and slipping the steri strip across works wonders in a situation like this. There almost as good as stitches if you get the tension right, and you can buy them almost everywhere. Then a dollip of triple antibiotic and a gauze cover and you're good to go! Of course, best to let your surgeon know.



    Tender



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  • Caseysmom
    Caseysmom Member Posts: 507
    edited November 2007

    Big relief I received my pathology report today negitive for ibcCool

    My pcp wants me to see my plastic surgeon to have the sores removed.  I asked him about a wound clinic but he wants me to see the plastic surgeon if she feels that the sores do not need to be removed then he would send me.

    Thanks for all the support and prays.

    Laura

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    Laura,



    I just saw your post! This is just simply great, wonderful, vundabaar news!!!!



    Thank you for letting us know. I'm so very, very happy for you.



    All the best,

    Tender

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited November 2007

    Since my last visit to the pcp I have gotten several more sores on my left breast. With the biopsy comeing back negative for cancer I can not understand why I more sores keeping poping I finished all of my treatments 2 years ago. The ps tells me that it from rads and my rad oncologist tells me its not from the rad treatment.

    I saw the plastic surgeon yesterday she was very shocked with how many sores I have.  The only sore that she is going to remove is the original one that was biopsied at the end of last month and still has not healed.  As for the other sores she does not want to do any biopsies she told me that I would have allot of scars on my breast and she does not feel that they are cancerous. 

    When I was original dx with IBC I did not have the so called typical symptoms so with that in mind I am going to call U of M's IBC clinic to get a second opinion. 

    Laura

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited November 2007

    Laura

    I met with my radiation oncologist yesterday for the first time. He told me that the typical way that IBC behaves when it recurs is open sores. I would definitely do as much followup as possible to make sure that it isn't a reccurance.  Good luck to you!

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited December 2007

    I am scheduled for the removal of the largest sore on Dec. 12th. I could not get an earlier surgery date because of the aspirin that I am taking.  So I am going to wait until I get the results back from the biopsy before I go out to U of M.  I have spoken with U of M and they agree to this plan.  In the mean time I am gathering all of my records.  

    One of the nurses that I work asked me to humor her and to seek another opinion along with going to U of M.  The nurse I work with was able to get me an appointment yesterday with one of the oncologist in our group practice.  As I was talking to this onc I could tell that she had no knowledge of IBC she does not believe that this is a recurrent cancer coming back she thinks it dermatitis. However she did order another CT scan and bone scan and wants me to see a dermatologist.  This onc wants to see me back after I have my surgery by then I should have my resutls of my CT Scan and Bone Scan done along with a consult from the derm.

    My gut feeling to all of this is that the cancer has come back normally my gut feelings are correct.  I hope this time they are not.

    Once I know more I will update everyone.

    Thanks again for listening.

    Laura

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  • Lolita
    Lolita Member Posts: 231
    edited December 2007

    Good luck to you. I hope your gut feeling is wrong as well. I see you are in Detroit. I am writing from Ypsilanti Michigan. We're both lucky to have U-M close by for second opinions when necessary. Please do update.

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited December 2007

    Laura, thanks for the update.  I am glad you are being proactive in finding out what is wrong.  Good luck on your tests, and I wish you the best!!!!  Do keep us posted.

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited December 2007

    Well its has been a world wind the last few days.  I had the main sore removed on Wednesday just having a little pain other then that I am OK. 

    My oncologist called me yesterday and gave me some news that I was not ready to hear or handle.  I had a CT scan done last week of my chest, abd, pelvis the scan came back with some of the lymph nodes under my right arm are swollen.   

    Well today I saw my oncologist we went over everything and my path report from Wednesday which came back negative which is great however I still do not have an answer of what the sores are from. The biopsy that the derm did last week also came back negative.  So to be on the safe side my onc wants me to see my breast surgeon which to my surprise it could get an appointment with him this Monday. I know that I will have to have some kind of biopsy I just hope that I can get this done before the holidays.

    Laura    

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  • shrink
    shrink Member Posts: 936
    edited December 2007

    Laura, hoping for a good outcome and thinking of you.

    Marian

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  • kimmie39
    kimmie39 Member Posts: 319
    edited December 2007

    Im keeping up with you and wishing you well.

    hugs

    kim

    va 

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  • lexi4
    lexi4 Member Posts: 1,074
    edited December 2007

    Laura,

    Well, I am relieved that the sores aren't cancerous. That's awesome news! Maybe there is some weird infrction or virus that your body is trying to fight off. That may account for your swollen nodes.

    Hugs from CA,

    Lexi

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited January 2008

    Well I was not able to have my biopsy prior to the holidays.  My surgeon wanted me to have a PET Scan done before he does the biopsy. My onc called me yesterday to see what was going on beacuse he has not heard anything from the surgeon.  I told him that the surgeon wanted a PET scan done prior to doing the biopsy. I told him that I was getting the results the next day and he asked me to have the surgeon fax him a copy of the PET scan results.  He asked me to call him after I met with the surgeon. Today I was given the results of my PET Scan the findings: 1) PET/CT scan exhibits a right axillary FDG avid lymph node, with maximum SUV of 4.8.  This intensity of uptake is suspicious of metastatic disease. 

    2) Irregular and border line FDG avidity is seen at several vertebral levels as well as the bilateral SI joints, likely representing degenerative disease. I'm not  worried about this second conclusion I had a bone scan done last month which came back negative.

    I am schedule for my biopsy on Monday morning. The surgeon told me that he should have the results 3 days after the procedure.

    About 2 hours ago I spoke with my onc and told him what was going on.  He told me that once he gets the path report we will sit down and discuss it.  He asked me if I had an appointment with him soon I told him that I am scheduled on Jan 11th for a mediport flush and the following week with him.  He told me if anything comes back positive we will meet on that Friday instead of having the mediport flush.  Both of us are keeping our fingers crossed that this is nothing.  

    Laura

      

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  • kimmie39
    kimmie39 Member Posts: 319
    edited January 2008

    Laura - Im so sorry to hear about your latest test results.

    Im going to be sending you much love and healing vibes.

    Lets hope its nothing, When I was diagnosed the SUV was 9.0 and 10.2 Much higher than the 4.8 and that has to be a good sign.

    How long have you been NED?

    Do you participate on the ibc.research site?  I get allot of support at the ibc.support site. If you do not you might want to check it out. IBCers are hard to find. And you need support.

    Hugs

    KIm 

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited January 2008

    Kim:

    Thanks I will check it out this site.  As for how long I have had the NED it was two years august of 07.

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  • kimmie39
    kimmie39 Member Posts: 319
    edited January 2008

    I looked to make sure and its

    ibcsupport.org

    EVERYONE there is dealing with IBC. I find it really helpfull!

    KIm 

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited January 2008

    Kim:

    Thanks I will check it out.

    Laura

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited January 2008

    Sorry it has taken so long to update everyone on what is going on.  I am still very sore and bleeding from the biopsy that was done on Jan,7th. I saw the surgeon three days after the biopsy due to swelling under my arm that was the size of a tennis ball.  At this visit I received the results of the biopsy  I was ecstatic that there was no cancer the lymph nodes. The surgeon told me that the nodes had silicone in them.  God only knows how this happened for I have had no trauma to the chest area and the implant has only been in for a year and half.

    I spoke with my plastic surgeon on Friday night she told me that her office  called her while she was in the O.R.gave her my message that there was no cancer. She told me that she did a happy dance in the O.R.  She asked me about any trauma I told her no trauma to the chest and that my last MRI was done in September and it did not show any rupture.  So I am scheduled to have an MIR done on Sunday.  Once we have the results back we will make a plan for surgery. 

    Laura

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited February 2008

    Well I had my MRI on Sunday, Jan 19th it took over a week to get my results.  On Monday, Jan. 27th I was told that the MRI showed a rupture in the implant.  I had surgery on Jan 30th when my plastic surgeon removed the implant it did not have a rupture in it.  She also opened the swelling under my arm which turned out to be a hematoma.  So since there was no rupture how on earth did I get silicone in my lymph nodes.  Now I am concerned that the lab screwed up.  I spoke to my onc to see what he thought about having the lymph nodes out for a second opinion.  He asked me to contact my surgeon and have them send the tissue out to the Mayo Clinic.

    I spoke to my surgeon on Monday and asked for a second opinion on my lymph nodes.  I told him that my onc and I wanted a second opinion from Mayo Clinic.  So now I am waiting to hear from Mayo.  

    Laura

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited February 2008

    Laura,

    I am so sorry! What a pain to have to deal with this. Hopefully all of those educated people can figure out what is going on. Keep us posted, and hope you recover quickly from surgery.

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited March 2008

    Sorry about the taking so long to give an update.  I have been fighting with the lab to send my tissue slides.  So I got my surgeon involved to see if he can help me with this.  I have been calling his office every week to see if anything has come back from Mayo.  On Monday I was finally able to get the lab to send the samples out to Mayo. Hopefully I will get the results next week.  I will keep everyone posted.

    Laura

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited March 2008

    Good to hear from you Laura. Best of luck with all the frustrating stuff you are dealing with. Take care of yourself!

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited March 2008

    I finally received my second opinion pathology report from Mayo.  The only thing that I understood on the report was Negative for carcinoma Smile.  Not sure what everything else means.

    "Reactive lymph nodes characterized by follicular lymphoid hyperplasia with focal follicle lysis, monocytoid B-cell hyperplasia, and focal foreign body giant cell reaction."

    This report was much more in-depth then the one that I received back in January.  What a big load off my mind.

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