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

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!!!!!! 

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.  

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 

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

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 

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!

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!

Nancy

DCIS, IDC and IBC 

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

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