IBC questions and concerns....I am very frustrated

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited November 2007

    That is so frustrating.  They should do a skin biopsy on the area is red.   my ibc didn't look like the really bad cases you see on the internet.  My IBC breast was quite a bit larger than my other, and I had a baseball sized mass.  My skin was really thick and dimpled and looked like the skin of the orange.  I had  itching and stabbing pains.  The itching was terrible! I tried hydrocortisone cream, and excezma medicines, and lanolin, and lotions, and nothing helped.  My nipple changed colors, and inverted.  The color of the IBC area was a mottled pinkish purple color, kind of like a bruise.  

    I too was told by 2 different doctors (my ob-gyn and a surgeon) that I did not have IBC.  They treated me like I was crazy for thinking I had it, and dismissed me.  I totally understand your frustration.  I too had a list of my symptoms written down and the doctors didn't even give it  second look.    

    My suggestion is to see a different doctor.  We KNOW our bodies.  We know when something is wrong.  They need to do a biopsy and take several samples so they can rule out cancer.  And just so you know, when they did my biopsy, they took several samples, and one came back negative.  

    If this is indeed cancer (and I pray that it isn't) I don't want you to end up like me with cancer spread all over your body before they finally figure out what is wrong, when you were telling them all the time what was wrong, but they just wouldn't listen!!!!!!!  

    Good luck!!  Be proactive in your care, don't rest until they have a definite answer for you.  I played this game for 5 months until I finally found the doctor that diagnosed me!!!!  Unacceptably long, because by that time the cancer had spread.  I don't want this to be you.  If my struggle can help one other person, than I would be so grateful!!!!!! 

  • shrink
    shrink Member Posts: 936
    edited November 2007

    Listen, Mel.  This is very, very frustrating and scary but all too common with IBC.  Women are being told repeatedly that they have an infection, it's in their heads, it will go away, etc.  Is it possible to get a third opinion, a skin biopsy at a major teaching hospital with a breast oncology guru?  I guess you live in Georgia.  What city?  There's a lot of information on ibcsupport.org.  You could ask there about resources where you live.

  • GAPeaches
    GAPeaches Member Posts: 11
    edited November 2007

    Sunnee, it's good to hear from you.  I've been following you to see how you're doing.  I know it took you months to get diagnosed.  I am so sorry about the mets.  Please know you are in my thoughts daily.

    Shrink, yes I live in Georgia.  Atlanta to be exact.  We do have Emory University here and that will be my next step.  I am finished with the so called specialist or general surgeons.  I'm going to the breast cancer center at Emory.  I am in the process of finding out exactly where to go and who to see and insurance information.

    Thank you so much everyone for the support you give here.  I read practically the whole website and the boards everyday but I'm just a lurker and don't post because I don't feel I have the actual experiences to be able to give sound advice or support right now.  When I find out what is going on with me that might be a different story.  Ya'll might not be able to get rid of me Laughing

  • GAPeaches
    GAPeaches Member Posts: 11
    edited November 2007

    Sharon, I know you're as frustrated as I am these days.  I wish you luck with the appointment in December.  Please let us know how it goes.

    Mel

  • shrink
    shrink Member Posts: 936
    edited November 2007

    Mel - Here's some info send to me by a member of ibcsupport.org

    I live in Franklin, NC which is about 2 1/2 north of Atlanta and I travel to Asheville to Hope-A Women's Cancer Center.  They are wonderful!  They also have a lot of resources there.  Maybe she could go there for the first time and they could refer her to someone in Atlanta.  They help out financial, with insurance and with travel money.  They have support groups.  They moved real fast with me.  I was seen by them one day and the next day at the hospital for more test, then back to the hospital in 2 days to have my port installed.  Then they started my chemo 3 days after that.  They are so nice there and supportive.  Even if you called them, maybe they could give you a number for Atlanta.  Their number is 828-670-8403.  I hope this helps.  

  • GAPeaches
    GAPeaches Member Posts: 11
    edited November 2007

    Shrink, thank you so much for that info.  I will definately call them.  I also followed a link today that a gentleman poster we have on the boards posted to a website that had several doctors that are supposed to be breast specialist. 

    I'll let you know how it goes.

    Kim, if you see this before tomorrow I hope all goes well.  Take care of you and when you're up to it let us know how you're doing.  You'll be in my thoughts tomorrow.

    Mel

  • kimmie39
    kimmie39 Member Posts: 319
    edited November 2007

    Hi peaches,

    Its so nice to hear from you. Even when its not good news.

    I can TOTALLY appreciate your frustration.

    I have a little story about myself that I hope helps.

    You see I had to see 4 or 5 docs toi get one that knew what they were doing, it took me 3 months to be diagnosed. And thats with very diligent work on my part. I was told by my surgeon who said he has extensive education in breast disorders, that if he were to biopsy it would have to be "Random skin biopsies" because there was no lump, he also said IBC starts with a lump . Then After I was diagnosed with cancer I said "can we get this thing going now? IBC is very aggresive and Ive put off treatment long enough" at that he told me "IBC is NO more aggressive than any other BC"!!!  can you believe it????

    So the moral of my story is - Now Ive been diagnosed stage 4!! There is a small amount of cancer in my bones. I can not look foward to a CURE. I will be fighting cancer for the rest of my life because it has gotten past my breast and lymph nodes. I believe in my heart that if SOMEONE would have taken me seriously in the beginning the cancer would not have spread and I would have a chance for a cure. 

    Because of my experience I will push ladies like you to advocate like your life depends on it!!!Because it just might. 

    I DO NOT want you or anyone else to experience this. I wish it wasnt like this. But for now all we can do is keep posting and help each other out.

    Hugs

    Kim 

  • Caseysmom
    Caseysmom Member Posts: 507
    edited November 2007

    Mel:

    I also did not have the so called typical symptoms of IBC my breast was neither swollen, red, or infected my only symptom was a mass that looked like dermatitis.  I was lucky to have a very proactive surgeon who told me the only way that we would know for sure is to have a biopsy which he did that day in his office. 

    Kim good luck tomorrow

    Keeping both of you in my prays.

    Very Big Hugs

    Laura

  • Shirlann
    Shirlann Member Posts: 3,302
    edited December 2007

    I am a little upset with this thread. Most docs have never even seen IBC. That is number one. The other really bad thing is it cannot be diagnosed with a mammo or an Ultrasound, ONLY A BIOPSY!!!



    This seems to be to hard for a lot of docs to get through their heads.



    So GO ELSEWHERE!!!



    Find out what is wrong, whatever you have to do, and don't go to any of your doc/onc's buddies! They back each other up.



    Hugs, Shirlann

  • kimmie39
    kimmie39 Member Posts: 319
    edited January 2008

    AMEN and well said!!!!!!!!!!!!!!!!!!!!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Hi Ladies,

    I've mostly been reading, or "lurking" as I see it's called, but I had to make a comment here. I have gotten so much good information from this site so far, and feel so much better.

    I went to have my mammogram, that was due, because I had some redness to the skin of my left breast, and my nipple had started to invert.  The redness was so slight that I wasn't sure that I was really seeing it. Could I have slept wrong, was it from a hot shower, whatever.  No swelling, no heat, no lump. I did, however, have the "peau d'orange" orange peel skin, but only slightly. I always thought that I had big skin pores anyways.  After several mammograms, 2 MRI's, ultrasounds, and  two core biopsies (six samples from the left, one from the right), I was diagnosed with DCIS and IDC.  My tumor was 4 x 5.5 x 6cm, and no one felt it: not 3 doctors, not me, and the surgeon couldn't even feel it right up until the mastectomy.  Scary. I've also had mammograms regularly since I was at least in my 30's, maybe earlier, because I was large, polycystic and paranoid.  Here's the rub...I reviewed the pathology results from the mastectomy on the left and reduction on the right.  Nowhere did it state that the skin was examined, not in any of the samples.  I wanted to know for sure, even if the treatment (radiation) would be the same ( had chemo prior to my surgery and it's a good thing that I did).  I called the pathologist myself.  She wouldn't talk to me.  I had spoken to a pathologist prior to this about a lumpectomy sample on my other breast, so I know that she could have.  The point is, when I went back to my surgeon for my post-op recheck, guess what?  The pathologist had revisited the sample, checked the skin, and I have Inflammatory, too. 

    I am so glad that I pushed...you have to.  Don't let them make you think you are crazy.  You know your body, it is yours, you live with it, you look at it every day, and they don't!!!  At least my Onc and primary surgeon are familiar with IBC, as is my Radiation Onc.  I am hoping that my last fill for my expander will be tomorrow, and we need to jump right on radiation.  I had questioned a second chemo, but the tumor board deemed it not necessary, as I am ER/PR+ and am now on Arimidex.  

    I have spoken with three other women in my support groups and Reach to Recovery, and one of them is 7+years out and doing well.  It gives me hope, but I still don't trust the IBC.

    Sunnee, I have read your comments on the December rads thread, and I have such respect for you and your attitude.  Fight the good fight!

    Gardengirl 

  • GAPeaches
    GAPeaches Member Posts: 11
    edited January 2008

    Hey all,

    I've been doing okay.  Still no answers at all.  I spoke to someone at Emory, explained everything, she called me back and said send all your films and MRI to her and she would have an appointment set up for me.  So I got all my films and MRI and sent them at the beginning of December.  I wrote a long letter and listed out in detail all the symptoms I was having.  I made sure to include our conversation regarding scheduling me for an appointment.  I gave her a few days after I know she got my films (UPS.com is amazing) and called her when I hadn't heard anything.  She got my package, read my letter, and was giving everything to one of the doctors and would call me back about that appointment. 

    HERE IT IS JANUARY 10th AND I STILL HAVEN'T HEARD ANYTHING.  I called and left messages a couple times, waited thru the holidays, stayed patient, still no word to date.  Then one sunny afternoon here in the balmy south I received a bill in the mail.  A bill for reading my films and MRI.  $400+.  I had to sit down.  Suddenly I felt my stomach in my throat and instant infuriation.  I'm being billed for something like that and still haven't seen one person, not even a phone call. 

    Then on the 7th I got a call, here at work, asking if I had received the bill they sent.  I went beet red, couldn't say anything for about 10 seconds then said  "yes, I received your bill and I'm not paying it. You've billed me for services and I've never even seen a doctor".  Hopefully that one will work itself out. 

    Everything is the same, no worse, no better.  I'm just going to wait.  Keep a close eye on everything and see what my mammo turns up with this year.  I keep telling myself that my MRI was clean as a whistle.  I know they are very sensitive and  typically show things that turn out to be nothing instead of missing something that is really there.  I still have a small gut feeling but my gut has been wrong before.

    I really appreciate all your support.  I'll still be around as I come to the boards nearly everyday so I can check on how everyone is doing.

    Thank you all,

    Mel

  • GAPeaches
    GAPeaches Member Posts: 11
    edited January 2008

    Gardengirl, Thank you for sharing.  You've been thru a lot.  Your journey with getting diagnosed sounds horrific.  I'm curious........why the 2nd MRI?  Were all these tests done because of the peau 'd orange skin?  It sounds like they weren't doing them because of the redness.  What exactly did your redness look like?  When I looked in the magnified mirror my red is coming from all the capillaries being broken. 

    I'm glad you got treatment the way you did when you did. 

    Mel

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Hi Mel,

    The journey has been interesting, but I have faith in my team of doctors.  I wish you could find some good ones!  The second MRI was done to see how the tumor in the left reacted to the chemo, and to make sure that my right breast was clear after lumpectomy.  The tumor in the left was large, over 5 cm, and when I had the second MRI, the machine didn't see it. It confused me, because you could still see it on ultrasound. The cells were technically dead from chemo, and that's why they didn't show on MRI.  That meant that I had a really good chemo response! The chemo was done first because of the skin and the size of the tumor.  My skin looked flushed, and when I looked at it up close, I believe it was from capillaries too.  My tumor (IDC) was close to the skin, and maybe that's why it became inflammatory?  I don't know.  I haven't done any reading on it yet, but plan on checking out the IBC site some more.  I wish you could find someone who is familiar with it, and will believe you.  Did you call the American Cancer Society in your area to see if they know?  Have they done ultrasound?

    Hugs to you, and don't give up!!  Be a stubbornhead!

    Nancy 

  • lewima
    lewima Member Posts: 13
    edited January 2008

    Reading all about your nightmare, and am very sorry that you have to go through it, as well as everyone else.   I can tell you that I started last Jan/Feb feeling  occassional itching and burning in my breast.  This went on for a couple of months.  Read up on it, and decided that I was probably going through fibrocystic changes.  Had a CBE (clinical breast exam), and nothing was felt.  Was going to be scheduling annual mammo, but got delayed - work etc.  In April, I noticed a very slight pea sized area of indent (reminded me of cellulite) but I could only see it leaning forward and letting my breast drop.  Pain continued becoming more defined and following from my nipple through the affected area and under my arm.  I started getting scared.  I am a poor candidate for breast cancer - 4 children - all nursed up to approx 9 mo - first one at 21, I was 44 at the time - minimal alcohol use, no drug use, weight is moderate 5'10, size 12, 160lbs, and no family hx.  I decided I would wait one month and then make an appt.  It started itching during this period.  I tried to tell myself that it was only infected and now healing - when infection heals it starts to itch.  I saw the MD on May 30, had a dx ultrasound and mamo on June 1.  At the visit, the MD could not feel a lump but did say she could feel a denser area when I lay down.  She did not think it was anything, maybe an infected duct...  Anyways, by this time, I had seen the changes and knew, I kept telling her, "I know its cancer, I know its aggressive, I know its bad".  The affected area measure 1.5 cm, including the pink area surrounding the indented which was now about .7mm.  She ordered the tests more to placate me than anything else.  Even then, the radiologist told me that yes it was cancer, but we caught it early, it had spiculated edges, etc.  The MRI showed a 1.8 cm mass, with a dot dash like matrix extending posteriorly to the chest wall and anteriorly to the nipple - the exact line of pain that I had been feeling all along.  By June 27, the external area of involvement was an indented of 7 cm long (following the same path), with approximately 2 cm of pink involvement surrounding the indented area and centrally a bruised looking area.  My pores were becoming enlarged, but not grossly, my nipple was retracting.  I have pictures and want to share them with the world except I don't know where to post them... Help me out on that one if anyone can.  And all of you out there if you have pictures, lets make a site with them.  The most frustrating thing in all of this is the lack of good information.  I call so many of these sites the "placebo" sites.  They give you a modicum of information but no more.  We need somehting that actually tells us what the MRIs would, could or may or may not look like- with pics, same with PET scans, and Mammos etc.  Anyways, it was decided not to do surgery first, nor do a sentinel node bx.  Nor any other bx of the area.  I have had 4 mos of AC - TH, dose dense, every two weeks - and the herceptin every week.  I had double mastectomies on 12/4.  I had the Post chemo MRI which showed only a 2-3 mm of involved area where my tumor had been - a good response.  The radiologist had said that if she had not know about the tumor from the previous MRI she does not know whether she would have  been able to call it.  I had two lymph nodes still positive.  This was something I was totally unprepared for.  My radiologist said that if I had the sentinel node bx early on I would have had a minimum of 8-10 positive lymph nodes and probably more.  I never had swollen nodes on manual examination throughout all of this, although the area was always tender and sore.  After surgery, I kept thinking that they left too much skin, and have since talked to my plastic surgeon who says they have clean margins etc. but if it will help me as far as my worry, he will remove additional skin.  My first surgeon who did the original bx was great.  I just wanted this thing cut out, and she told me that in many cases that is just what they would do, but in my case, she wanted more information, which became more information, and more inforamtion... then she said I needed to see the oncologist before we did anything further, and he said chemo first.  I went to a different surgeon for the mastectomy because I wanted to have the expanders put in simultaneously and we don't have plastic surgeons near where I live.  So I went to a hospital two hours away.  I did two consults, both of the surgeons never spoke to anyone else, they did not review my MRIs, Mammos or anything else.  They both indicated that my cancer was not bad, nor was it IBC, etc, etc.  They said it was a small tumor to begin with, now it was next to nothing, and they did not think i needed radiation afterwards.  It made me feel terrified.  I elected to go ahead and have one of them do the surgery, she has 25 years experience behind her and specializes in breast cancer surgery.  I saw the radiation oncologist two weeks ago, he had looked at my MRIs, mammo, PET scans, and spoken to all of the MDs who had seen me early on.  He agreed with them - IBC, and that I needed full chest wall radiation, dose dense, as well as on the upper arm.  I felt relieved.  After 8 months of all of this stuff, I still get herceptin every three weeks, I still get sick, I am tired, I went on disability last month, the most frustrating part was dealing with the surgeons regarding the mastectomies, and the insouciant attitude that I was really fine, and that my oncologist was overreacting.  She had also told me that I read too much, which really made me upset, we need to educate ourselves!!! I started questioning myself, him, the other MDs who I've seen, everything.  I'm back on track now.  But it was rough.  I was never upset when being dx with the cancer, I was too afraid that they would not see it, or recognize it for being as bad as it was.  So with every test, which confirmed it, I felt relief.  With chemo, aggressive as it was, I felt relief.  When the worst part of the chemo was ending, I was terrified - I joked about separation anxiety.  My oncologist has told me that I have a high probability for recurrance, I am ER-, PR-, and HER 2+, I have a Ki-67 of 49% (which is really, really bad prognostically), nuclear grade 6/7.  

    Find that person who will help you.  I know I caught it early at the first signs and symptoms, but I can't help but wonder, what if I had gone to the MDs when I was first having the pains, or first saw it, instead of thinking that it could not be cancer, and the rapid changes, which scared the daylights out of me.  I know it was only a matter of a couple of months, but those are months that make the difference between those who live and those who do not.  And, your family may have one huge lawsuit when all is said and done, against those doctors, but that doesn't help you.  And I know my children would rather have me than any money.  One thing that I've said to every doctor is that I don't care about the treatment, I want it as aggressive as possible and I will make it through, bottom line is its my life, and I want to live.  Fight for your life, and get to one of the big centers that specialize in this... otherwise ask about elective mastectomies.  Good luck and God Bless you!

  • jan1012
    jan1012 Member Posts: 3
    edited April 2008

    Hi am a newbie and I read all your posts. I am going through a very similar experience now. My breasts are inflammed and pinknow for 2 months, they hurt and I have pain under my left arm. I had a biopsy (skin) and it came back as inflammation and edema. The surgeon said to go see a dermatologist or go back to ob/gyn that i was ok, but my breasts are so swollen,tender and reddish pink that I know something is wrong.(after all it is only my breasts that are like this) It was only my left breast and now it is both breasts showing symptoms. When I raise my arm my right breast & nipple now dimples up. by the way Mammogram and ultrasound are both normal. Not sure should I find another Dr/surgeon to do a different kind of biopsy? I am so frustrated right now and I am not sure where to turn. Can someone please help? best wishes,  Jan

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2008

    Jan, I would get another opinion if I were you.  Luckily, my surgeon was educated about inflammatory, and so was my oncologist.  They told me that IBC is usually diagnosed by clinical signs.  I think that someone needs to rule out infection, but a second or even third opinion is a really, really good idea.  If you have a local cancer center, try going there and see if a Dr would see you.  Or, find a surgeon on the Internet in your area (check the health insurance sites) that specializes in breast surgery.  Maybe they can tell you what is going on.  Don't wait.  Not all doctors know about IBC, I read this all the time.  Also, the surgeon that I picked specializes in breast surgery, and he was well informed.  The surgeon that I used for a second opinion would have done surgery on me first, and that would not have been good. I don't think he knew the protocol for IBC treatment.  I just saw a "process flow" or "treatment tree" for IBC the other day, and chemo was first.  I am so glad that I went with surgeon #1!

    There are a couple of IBC sites out there too that I frequent:

    www.eraseIBC.com and www.ibcsupport.org.

    Lewima, I don't think you can read too much.  Who else will advocate for you?  I am glad that you found it and was proactive.  You go girl!

    Jan, keep us informed, and God bless!

    NancySmile

    DCIS, IDC and IBC 

  • janie44
    janie44 Member Posts: 1,460
    edited April 2008

    Mel, Mayo Clinic in Jacksonville is not that far away from you.  Although I live in middle GA now, I was in South GA when dx'ed and decided to call them for different reasons.  I do not have IBC, but did get appointments within a week of my phone call, and they were extremely thorough in their examinations, as I am sure they would be with you also.  Insurance did pay "out of network" charges. 

    Also, I now have a very good oncologist / surgeon in Lawrenceville who check out everything.

    Janie

  • jan1012
    jan1012 Member Posts: 3
    edited April 2008

    Thank you Nancy. I am having a scond opinion this afternoon. The rash has now spread completely  over my breasts and the pain and swelling is unbearable at times. I got results to my skin biopsy and it shows a rash like shingles or hives ( only on my breasts), inflammation and leukocytes. I have tried creams and it is only getting worse. So hopefully this Surgeon can help me at least find out what is causing this not just go to a dermatologist. Thank you for your encouragement because I was feeling like a fool for a bit but I know and can feel that something is not right. I will keep you posted.

    Best wishes,

    Jan

  • jan1012
    jan1012 Member Posts: 3
    edited April 2008

    Just to follow up my appt yesterday. The Surgeon didn't even look at my breasts but directly reffered me to an oncologist at Watson Clinic.So I went over there right away and looked me over pretty thouroghly then he gave me antiobiotics because the skin biopsy looks infected and told me to come back on Monday morning to meet with a team of Dr's. Is this normal? No one has said for sure what is going on with my breasts and this process has taken several months already. I am frustrated and scared.

    Jan

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2008

    Jan,

    Maybe the Dr wants to confirm his suspicions with other oncologists.  I have not experienced this, but then my Onc was familiar with inflammatory.  It might not be a bad idea to take someone with you who is not afraid to ask questions and be an advocate for you.  Also, it's good to have another ear to register the answers to questions that you might have.  They can take notes.  My husband frequently heard things that I did not, and that was helpful.

    At least your surgeon seemed to be proactive.

    Please let us know how you make out; keep in touch, and you are in my prayers.

    Nancy 

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