IBC???

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Gymgirl2679
Gymgirl2679 Member Posts: 27
edited June 2014 in IBC (Inflammatory Breast Cancer)

Ok ladies I need a little advice!

I was diagnosed with Stage 2B, grade 3, 3.5 cm  with angiolymphatic invasion in April 2010, had lumpectomy and 4 nodes removed, 4 rounds of A/C chemo followed by weekly chemo for an overall 6 months of chemo, during my break between A/C and the weekly treatments I noticed a quarter size red rash, looked like red lace at first, I though perhaps from the chemo switch, reaction possibly, not located on the lumpectomy site, and i watched it, it felt kind of strange, tingled, burned, some ache which became progressed to the point that i went to my doc and they thought perhaps infection from seroma left in the lumpectomy site, tested and negative for infection, put on antiobiotics 2 rounds, by now i have the Orange Peel look, so i google and find IBC....Immediately call my oncologist and demand a biospy, she says no way, cant get IBC while being treated for BC currently, Ibc "doesnt present after the fact" or that way is what i am told so i continue treatments still jumping up and down saying something is wrong, still my team wont hear of it!! So  my question is has anyone out there developed IBC while undergoing treatment for another type of BC? They say it will be hard to diagnose with pathology due to the radiation i have already had.  Clinically I am positive. My MRI shows thick skin, U/S shows thick skin, first biopsy 2 weeks following radiation showed no cells, I return to Philly for another in 2 weeks, breast still looks like a red orange peeled painful, itch, burning, tingle breast.  Frustrated beyond belief.  Is it possible the radiation is messing with the results?????UGH Thanks Gymgirl 

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  • Faith316
    Faith316 Member Posts: 2,431
    edited February 2011

    I developed IBC while in the midst of my 30 rads treatments and while still on Herceptin.  (My original dx was IDC stage IIB, grade 3, 3.1cm tumor, ER/PR negarive, HER2/neu positive, 2 of 8 nodes malignant.)  All my doctors told me no way could it be IBC after all the chemo (AC x 4, Taxol and Herceptin) that I had been on and while in the midst of active treatment.   I had many of the signs.  Rash, swollen, hot breast, orange peel skin, thickened skin, flattened nipple.  There was suspicion that much of it could have been side effects from the radiation, but my radiation oncologist said that most of those symptoms are not side effects.  He was the one who finally ordered a biopsy and it was IBC.  So, don't let your doctors tell you no way can it happen.  It did to me.  After the dx of IBC, they questioned whether the Herceptin had kept the IBC from taking off so fast like it usually does.  We'll never know.  On the bright side, I stopped Herceptin, switched to Xeloda and Tykerb for 6 months and then just stayed on Tykerb .(I've now been on Tykerb for 19 months) and I have been NED for 18 months.  So, there is hope. 

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  • gracefarm
    gracefarm Member Posts: 17
    edited February 2011

    Oh Gymgirl, your team is very bad for you! If you're traveling to Philadelphia, can you get in to see the famous Dr. C at Fox Chase Cancer Center? I was diagnosed with IBC in May 2010, had A/C and Taxol and then, in the midst of 3 months of Aromasin, IBC came back. (I've already had my lifetime limit of rads so can't have more, but even I know your symptoms are NOT caused by radiation!) Jeez, you've got to find new doctors. You must be so frustrated and scared and mad. At least here on these forums WE understand these things. Please find a new team!

    Kim in Ohio

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  • Gymgirl2679
    Gymgirl2679 Member Posts: 27
    edited March 2011

    OMG! Finally someone who can relate!! I have been fighting hard to get answers!  I did have a biopsy finally after all my treatments for the IDC were complete however the bio came back negative.  How long after your radiation did you have your biopsy?  I just wonder if my treatments have kept this from going out of controll? However now that I have finished radiation, Dec 16, 2010 and the radiation skin has returned to normal shade i am still left bright red in the area of interest and have the orange peel look still, i had that before radiation while still on chemo, but the team I had still didnt think anything of it.  I just dont know how long it will take to really get a true result!  I am going back for a slice and larger punch biospy.  Would have been easier had they listened to me before radiation.  Did  you have more than one biospy?  My ct scan prior to radiation showed thickened skin, and u/s 3, showed thick skin, as well as mri.  PET scan clean, so I am not sure what is going on, but it is classic IBC clinically!  Thanks for  sharing  your story!  I really feel like I am going crazy over this!

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  • Gymgirl2679
    Gymgirl2679 Member Posts: 27
    edited March 2011

    I have had the pleasure of meeting Dr. C!  He is amazing!  I first encountered him Jan 2011, after I finished treatments here in Michigan, I booked at Fox Chase as soon as possible.  Met Dr. C and he took a look and said "why didnt your team do something sooner?" Not from the lack of me trying!  I seen my BS weekly so she could watch the changes as well as seeing the radiation oncologist weekly, which told me perhaps i needed physical therapy when finished! or maybe try meditation, seriously! Now I am just trying to see if we will ever really know by pathology, like i stated Dr. C said clinically i present with IBC and if you were to look at a picture of IBC its what I look like!  Cant be treated without a test picking up cells even though I have all the classic symptoms as well as thick skin.  So we will try again in a couple weeks when I return to Philly.  Thanks for responding and sharing your information with me. 

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  • Gymgirl2679
    Gymgirl2679 Member Posts: 27
    edited March 2011

    I have not been back to see any of my team since i finished radiation, I just dont understand why they just couldnt hear me, see me and do what is necessary? Really even if they were not sure do to lack of education they should have ordered a biopsy before radiation started, because now its really  hard to get a result due to the cell damage from radiation.  I have not started the tamoxifen yet, dont want to introduce anything else into my system until I know what is going on. I am very scared!  Perhaps the treatments I did have were strong enough to keep it at bay but not stong enough to make it go away!  I will keep fighting for answers!  Best of health to you all!

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  • gracefarm
    gracefarm Member Posts: 17
    edited February 2011

    Gymgirl, so glad you've seen Dr. C ... stick with him if you can. Just wanted to add that two weeks ago when the IBC came back, the breast surgeon did two punch biopsies on the site and one was positive and one was negative. I asked how could that be with the area so large, and she said because IBC is so scattered (in the sheets/nests Bonnie mentioned) biopsies often miss it; that's why she takes more than one. She even said it was possible we could have missed BOTH (which freaked me out a little because that would have caused further delays), but fortunately that didn't happen. I am very blessed that both breast surgeon and oncologist in our little community hospital understand IBC! Hang in there with us, Gymgirl! -- Kim

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  • Faith316
    Faith316 Member Posts: 2,431
    edited February 2011

    Not only did I have a punch biopsy, but I also had an excisional biopsy to get some of the tissue deeper within the breast.  Both came back  posiitive for IBC. 

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  • Ling29
    Ling29 Member Posts: 56
    edited February 2011

    Hi Gymgirl,

     I just saw your post and my first reaction is that you should go to see Dr. C for a second opinion, and I am so relieved to see that you have already seen him already and will see him soon. 

    Regarding to your biopsy, are you going to have your biopsy done in your local hospital? Just a thought, since you are going to Philly soon, maybe you can arrive a day earlier and arrange your biopsy there, after all, they are more experienced over there. I am not sure whether the pathology report can come out within a day, but it's worth asking. 

    I am actually going to see Dr. C in a few weeks too, my appointment is on 15th March, and I'll live in Hope Lodge for my appointment. Let me know if yours is the same.

     Sending you lots of warm hugs and courage.

    Ling 

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  • hope123108
    hope123108 Member Posts: 58
    edited February 2011

    Hello Ladies,

    I to am dealing with symptoms of IBC. I was triple negative and keep finding red, dots, rash, pimple like marking that come and go.  Don't understand i called my local oncologist but hot bla, bla, bla. Like they don't believe us.  This famous Dr.C he is at Fox Chase?  I have been there 2 times perhpas i should go round 3.  Trying to put the symptons and pieces togother is Dr. C from MD Anderson? Very scared!!!! Like all of us....Tried to get pictures of the red blotches on my cell so I could show the Dr. put they hardly show up on cell but look like red monsters from the eye view. I don't know that i would advocate for myself as much if you ladies didn't teach me oh so MUCH, way way more than so Dr.s.  Any advice would be great.

    Have a great day in-spite of it all.

    Hope

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  • Gymgirl2679
    Gymgirl2679 Member Posts: 27
    edited March 2011

    Ling

    I had my first biopsy done at Fox Chase by Dr. Zook, I was 2 weeks post radiation at that time.  Dr. C said I am clinically positive however the biopsy was negative.  He advised me that if things didnt improve to return in 2 months.  I am scheduled to see Dr. Zook as well as Dr. C on March 22, I will have excision biopsy as well as a larger punch sample and we to will be staying at the Hope Lodge as well.  That place is amazing and Erin and Byron are awesome!

    Hugs back to ya!

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  • Ling29
    Ling29 Member Posts: 56
    edited March 2011

    Hi Gymgirl,

     So your appointment is just one week after mine, it sounds like you've arranged the best plan for your already. Good luck with your biopsy ad appointment!

    I've heard many good things about Hope Lodge before and I really look forward to be there, especially after more than 10 hours of travelling.  

    Hugs

     Ling 

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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited March 2011

    Hello, I am the younger sister of a woman with IBC. I don't want to interrupt the great exchange of info going on here, but just would like an answer to a question from someone who actually talks with Dr. C. I have not been able to get my older sister to leave her California HMO situation for an opinion with Dr. C or at MDA. I just want to know whether a person with IBC who is not being seen by Dr. C or MDA would still be able to be part of his new International IBC Registry? Could someone who does see him ask him for me? My sister has 2 daughters and I am hoping to at least have her IBC become part of the registry so that we all learn as much as we can about the variations of it, and the differences in the need and types of treatments and successes and failures.

    Thanks

    AlaskaAngel

    P.S. She had IDC 10 years ago and has never had recurrence, but was dx'd with IBC in 2010.

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  • Gymgirl2679
    Gymgirl2679 Member Posts: 27
    edited March 2011

    I hear you about the traveling!  I have to drive 11 hours, ugh!  Hope Lodge is amazing, you just have to bring your clothes and food, they have everything else! 

    Have a safe trip!

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  • Gymgirl2679
    Gymgirl2679 Member Posts: 27
    edited March 2011

    Yes this is the famous Dr. C from MD Anderson now at Fox Chase!  If you still have doubts then keep pushing for answers, I am!  My team of docs here in Michigan looked at me like I was nuts when I asked for a biopsy, and I had never  heard of IBC before I googled my symptoms. 

    Doctors DONT know everything and my doc let her EGO get in the way, rather than order a biopsy before my radiation began and chemo ended she just blew it off with the "its not possible" statement, little does she know it is VERY possible to develope IBC at the same time as other BC as well as during treatments!

    Good Luck! Keep fighting for yourself!!!

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