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What are the chances this isnt IBC?

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  • CuterWCurves
    CuterWCurves Member Posts: 34
    edited March 2012

    Sar you keep mentioning twix... I am craving those now too. *giggle* I already polished off a container of hummus. *blush*

    Hope you feel better soon. 

  • SAR843
    SAR843 Member Posts: 26
    edited March 2012

    I just had chips and hummus for lunch! I bought a lot (a lot!) of Twix the other day and froze some of them. Feeling a little better now, so maybe it's time to dig in. :)

  • Avaliente
    Avaliente Member Posts: 1
    edited March 2012

    Hello all. My mom woke up one morning with her Right breast really swollen. We went to a doctor in Vegas and they said it wasn't IBC. We then went to cedar Sinai in LA for a second opinion and they are treating her for ibc. She got a bone scan and a pet scan along with MRIs. It is no where else in her body. Her lymph nodes are clean as well. She started her first round of chemo on Friday (adriamycin and cytoxan) then immune and hydration yesterday yesterday Saturday march 4th. Her breast is very red and warm now and we are very concerned to why this might be happening. Any ideas? Thank you so much for taking time in reading this post, everyone is in my prayers.



    Anthony

  • CuterWCurves
    CuterWCurves Member Posts: 34
    edited March 2012

    LOL Bon... It was why I finally jumped in and registered. It felt like I was hearing my own voice reading her words. The feelings. The fears.I am glad I did because Sar is awesomeness!

    mmmm KLONDIK! Gosh I miss being stateside. They are brutally awesome. I am not sure it would taste the same up here if it is available so I never looked. *giggle* 

    I was going easy on the hummus today. I went with tricut thin crisps, marble (colby jack) cheese, and some polish sausage. *blush* The real reason being vegitarian only lasted a short while for me. I am a touch too fond of my occasional hit of nitrates. *giggle*

    Shell

    --------------------------------------------------------

    Hi Anthony,

    You might want to start a new thread... But I would say consult with the Dr as soon as possible.

    Shell

  • SAR843
    SAR843 Member Posts: 26
    edited March 2012
    It was meant to be! Though I wish we could have found each other/bonded over something much better. But we'll always have hummus (well, until I eat it all). And Twix. I'm enjoying you being a part of the posts as well, Bon. Smile
  • CuterWCurves
    CuterWCurves Member Posts: 34
    edited March 2012

    Sar you can't eat all the hummus unless you come steal the stock pile I have in my home...

    I totally didn't remember to get twix when I was out though. *sigh* Blonde moment!!!

    And I will second Sar... Bon I love that you are part of this too!

  • SAR843
    SAR843 Member Posts: 26
    edited March 2012

    My doctor just called with the biopsy results. She said the cancer is at least a stage 3. She also said I'm ER+, HER2-, and PR-. She explained what that means, but I can't remember. I'm having the CT scan tomorrow and I just know it's going to show the cancer has spread. I'm terrified. 

  • CuterWCurves
    CuterWCurves Member Posts: 34
    edited March 2012

    Oh Sar! *big hugs* It is awesome that she is getting you info so quickly... If the phone option is going to be used maybe a little pocket sized note book and pencil? Just an idea.

    The good news is... NOT Tripple Negative! w00t! I am very, very glad about that! It means that it is hormone receptor positive. From what I have read that is a good thing because it means they can add/use hormone therapy. Tripple negative means they can't and it has a higher chance of reoccuring. So this is GOOD.

    CT's are not so bad... Did they say which area/s they are doing?

    What time is your CT? I'm in for an echocardiogram at 8:45. 

    P.S. I'm terrified too! 

  • Faith316
    Faith316 Member Posts: 1,088
    edited March 2012

    I don't know how your doctor could know that it is at least Stage III before the CT scan.  Biopsy results only give the pathology of the piece of tissue that is put under the microscope.  So, I'm not sure why she is telling you that you are Stage III at this point.

  • ibcmets
    ibcmets Member Posts: 312
    edited March 2012

    I believe ibc starts with stage III due to the lymphatics of the skin.

    Sar,  Best wishes on your scans.  I'm almost 3 years out from diagnosis.  I had bone mets from the start and my onc says I'm one of his hall of famers. 

    Terri

  • CuterWCurves
    CuterWCurves Member Posts: 34
    edited March 2012

    Faith... There are many ways it can be defined as stage 3 http://www.breastcancer.org/symptoms/diagnosis/staging.jsp#stage3 from what I see on this site...

    If you read up Sar was given some anesthetic that made her nauseated. ;-) It was a bit more than a FNA, or core biopsy that was done.

    Regardless... From what I understand. IBC results in an automatic minimal diagnosis of IIIb.

  • SAR843
    SAR843 Member Posts: 26
    edited March 2012

    Cuter - I know! I so wished I had a pen/paper. My doctor even asked me if I had something so I could write everything down. The CAT scan is at 3pm tomorrow. I went today to pick up the stuff I have to drink. Looks delicious. Ha! Good luck with your test too!

    My doctor said the symptoms and results are very similar to IBC, but she wants to wait until she has the results of everything before she makes a final call on that. I think she's holding off on saying anything either way to keep me from freaking out. B/c after she told me about the stage 3, I think she could hear I was upset. I've been crying on and off all night. I'm just so scared for CT results. 

    I made an appt today at another breast care center to get s second opinion on everything. The appt. is next Wed, which is good since I should have all the results by then.  

  • CuterWCurves
    CuterWCurves Member Posts: 34
    edited March 2012

    Bon joining to talk to Sar was one of the best things I could do. Even though right now no one is sure what the end results will be for me, and I might end up going in another direction with testing, and may never get full answers for what is going on... I'm in limbo... Sar is an awesome listener and we pm regularly, are on each others FB now, and exchanged phone numbers (which if she needs to my cell is ALWAYS on).

    I think the idea of anxiety meds, or sleep meds can be a bit scary for some... I am avoiding the anti-anxiety meds and sleep meds thus far... I worry about the side effects for me as I have an 8 year old but  can say if I didn't haveparental obligations that require me to be hyper vigilant about things I might be inclined... That said once a diagnosis comes I may very well change my mind. *soft smile* Bon is right... If you stop being ale to sleep, or it gets too much and your coping mechanisims are not working it is a very good option Sar.

    I may have to figure out how to make ablender drink that tastes like Twix Bon... hmmm ... Time to use my old bartender skills from when I helped frends come up with concoctions.

    Big hugs today Sar... I have to leave memtarily for my appointment but I will be back on before yours.

    Shell

  • Faith316
    Faith316 Member Posts: 1,088
    edited March 2012

    That is correct.  IBC is always a stage III at minimum.  I just wasn't thinking when I made my post above.  (I'm even an IBC girl myself.  Can I blame my momentary lapse in intelligence on my chemo brain?!)

  • CuterWCurves
    CuterWCurves Member Posts: 34
    edited March 2012

    *giggle* Faith I think you can! I will now admit I shook my head and chuckled as I posted the post thinking you were going to kick yourself in the bum a little when you looked back at this. Hence the ;-).

  • CuterWCurves
    CuterWCurves Member Posts: 34
    edited March 2012

    *giggle* It's all good Bon. It is a hard choice to make... It is also much easier to get them stateside then it is in Canada in many cases, and there seem to be more things tied to it. Some will cause a Dr to report it to the DMV a.k.a MTO... etc. I think i would really lose my marbles if I was house bound and dependent upon others to get me somewhere.

    And... SAR incomming PM! *happy dance*

  • SAR843
    SAR843 Member Posts: 26
    edited March 2012

    So, I had the cat scan yesterday. My doctor called me last night to tell me that the scan was clear :). But, she said, since it was just a scan of my chest/abdominal area, it could still be stage 4, if it has spread to my bones and/or brain. So, she's trying to get me in for the scans asap. I was really happy about the scan results, b/c I thought, well, even if it's stage 4, at least it's not in my organs. And then I though, crap, it could still be stage 4. My doctor also said she was officially calling it IBC. She said there are actually two types of IBC, but I guess the IBC has taken over so much already, she's going with that. So, I finally get some good news, but I couldn't enjoy it for too long. I wish they could just do all the scans at once. 

    Off to read PM now...very intrigued by the happy dance :) 

  • SAR843
    SAR843 Member Posts: 26
    edited March 2012

    My surgeon said as soon as I see the oncologist (seeing one on Tues and one on Wed) and decide where I want to go for treatment, I'll have the port put in and start chemo asap. 

    Trust me, that's something that is rolling around in my head 24/7. I wish I could have started chemo as soon as I got the diagnosis. It's been almost 6 weeks since I first noticed symptoms, and I just want to get moving with the treatment. 

  • kicks
    kicks Member Posts: 319
    edited March 2012

    SAR

    I'm wondering if you really know what IBC is when you say your Dr told you there were 2 types of IBC. Inflammatory Breast Cancer (IBC) has one type. There are 2 types of invasive (aka infiltrating) breast cancer with are Invasive Ductal Carcinoma (IDC) or Invasive Lobular Carcinoma (ILC). Though. The letter 'I' appears in the abbreviations for all 3 but the 'I' in IBC is not the same as the 'I' in IDC or ILC. It's not unusual for newbies to see IBC and hear invasive/inflitrating and think that because breast cancer is there that IBC refers to invasive breast chance when it doesn't. ER/PR and HER2 status does modify the TX but doesn't change the type.



    When you see your Dr on Tuesday ask to be sure rather or not he/she is saying Inflammatory or Invasive. Big difference in prognosis and TX.

  • Faith316
    Faith316 Member Posts: 1,088
    edited March 2012

    Kicks, I also wondered about SAR's statement about two types of IBC.  That's nothing I've ever heard of either.

  • SAR843
    SAR843 Member Posts: 26
    edited March 2012

    Sorry, I guess I confused everyone. My doctor said there are two types of breast cancer (not two types of IBC). One is IBC and the other is DCIS. But, of course, the IBC is what the dr. is most concerned about.

  • Faith316
    Faith316 Member Posts: 1,088
    edited March 2012

    There are more than just IBC and DCIS.  IDC, lobular, Paget's, etc.

  • kicks
    kicks Member Posts: 319
    edited March 2012

    With you remembering your Dr saying DCIS and another type, he/she probably said IDC as the other as they are related - both ductal. IBC is not ductal. It wouldn't be hard to be told IDC but 'hear' IBC. 'D' and 'B' can sound similar especially when upset and not understanding the terminology. It could also be easy to not understand the difference between 'Inflammatory' and 'Invasive/Infiltrating'.



    As you can see with the Sections here there are more than 2 types of breast cancer. There is DCIS, IDC, LCIS, ILC and IBC. There are other types that are rarer than IBC which is only between 1% and 5% of all BC.



    Your biopsy gave you your ER/PR and HER2 status so your Dr has what type breast cancer you are dealing with. I don't know if a path. Can differentiate between DCIS and IDC as they are related but it will between IDC and IBC.

  • SAR843
    SAR843 Member Posts: 26
    edited March 2012

    My doctor didn't say IBC, she actually said, in words, numerous times, that it's Inflammatory Breast Cancer. Then she said there was also DCIS. I'm saying IBC, b/c it's easier to use the abbreviation. This is a hard enough diagnosis to deal with as it is, and I wish more than anything that it was less aggressive type, and I kind of feel like you're all ganging up on me and  jumping down my throat, and making me feel even worse. I'm sorry I misspoke in my earlier post, but I cleared it up. I don't know you're giving me a hard time. 

  • Faith316
    Faith316 Member Posts: 1,088
    edited March 2012

    I don't think people are trying to gang up on you and give you a hard time; just trying to clarify about the different types of breast cancer.

  • CuterWCurves
    CuterWCurves Member Posts: 34
    edited March 2012

    Bonnie you beat me to it!



    Ok... For the sake of clarification. From what I know IBC is a clinical diagnosis which includes a specific set of symptoms including skin involvement which Sar has as Bonnie pointed out. That NEVER means there can't be DCIS as well in the same breast. I think the best term I've heard to describe this is a potpourie of BC. Typically it will be treated based on the most invasive and aggressive form of cancerr.



    Do I have a diagnosis of IBC? No. Do I have a dianosis of BC at this time? No. Am I in the midst of uncertainty, attempting to get answers and being so far into the not knowing that I'm embracing hope that what I'm personally going through is anything but IBC or even another type of BC. I found the site looking for answers. I found the thread and felt the anguish, fear and frustration of someone in my age range struggling to find answers in a time of confusion.



    She's just been hit between the eyes with a hard thing to process. Her Doctor recognized a problem right from the start. Is moving rapidly. She has been told SHE has 2 things going on. Inflammatory Breast Cancer, and DCIS. IBC because of skin involvement and the extent of the cancer led her Doctor to say it is a MINIMUM of stage 3. So far so good and what has been scanned has shown no distant locations though she has more tests pending... I'm darn sure that in your first 2 weeks there were thing you found overwhelming, and occasionally you may have worded things incorrectly. Heck Faith did that already in this very thread. If we're forgiving Chemo Brain then we darn well better be forgiving "completely overwhemled and lambasted with craptacular news brain"...



    Quite frankly if we're not then I'll bow out of the board and continue the friendships I've estalished elsewhere. Not to mention the posts I've been able to contribute that provide information or even just humour. To be honest this is why I've not hung my own arse out in the wind and posted a thread until I have more answers.



    Please forgive any typos... This was typed on my blackberry...



    Shell



    ((((((Sar)))))) & ((((((Bon))))))



    *passing bags of cookies, containers of hummus, and twix bars around*

    Oh and for anyone thinking dining on the fun stuff is wrong... Can I just say life is too darn short to not allow for indulgence and comfort food in times like this. PERIOD!

  • scuttlers
    scuttlers Member Posts: 149
    edited March 2012

    Sar,

    So sorry to hear of your diagnosis. I do not believe the other posters were meaning to be argumentative. There is a HUGE difference in treatment protocols for Inflammatory Breast Cancer vs. other BC's. Many doctors are not aware of IBC and the treatment sequencing. So I really believe the other posters were wanting to make sure your doctor was experienced and knowledgable.



    As you know it is aggressive, it is scary!!!! It looks like you have a good grasp of what needs to be done. Port, chemo, and onward.



    As a upper in this time of struggle for you - I am entering my fourth year now. The last two years I have been NED! (no evidence of disease). PM me anytime if you like. (I did end up going to MDA in Houston to the IBC Clinic, they introduced me to NED.)



    Also, IBC is on the Compassionate approval list for SSDI (Social Security Disability Insurance). If you are working and have Short Term and/or Long Term Disability think of filing early so you can focus ALL energies on getting a great quality of life. Also Accelerated Life Insurance benefits can make life much easier. PM me if you need more information.



    ((((SARS)))) hugs all around you.

  • scuttlers
    scuttlers Member Posts: 149
    edited March 2012

    Sar,

    Just went back and reread your posts. Re: no insurance. Sucks! Ok, so file on line with Social Security. If you have worked in the past and have enough quarters, you should be a fast approval for SSDI and then Medicare (after waiting periods). Hopefully, they can get you on SSI and Medicaid quickly to give you some peace of mind. Social workers, finance office at the cancer centers may have some options for help. The sooner you file, the sooner you should get approval.

    Hope this helps a little bit.

  • Faith316
    Faith316 Member Posts: 1,088
    edited March 2012

    I for sure was not trying to be criticial/argumentative/unforgiving/etc.  I was merely trying to help clarify a few things.

    Good luck to you, SAR!  I hope your doctors will soon be able to get you on a path to good health.  

    I was only trying to help in this thread, but for some reason, my words were seen as something other than what I intended them to be.  So, I feel it is best if I back out of this thread.  This thread needs to be only about helping you as you face this journey so let's get it back to that and that alone.

    Best wishes.  You're gonna do fine!