Calling all IBC's -Treatments -Chemo-Prognosis-Concerns

liv-

Hello, thought we need a thread for all IBC's..

Any concens or advice please come here and share or ask away.

just briefly i was misdiagnosed for just over 3 months. was put antibiotics as eveyone thought that i had an infection, it took over 3 months to be told that it was not an infection but infact it was IBC.   this is usually the norm for most ibc patients not being diagnosed straight off.   In that 3 moths it had gone to my nodes which is normal for ibc and i was lucky to be staged at 3b but unfortunately because of late diagnosis many ibc patients go straight to stage 4 as it has already spread to other organs because of time delay in being diagnosed.

Everything I have learnt since my diagnosis are from wonderful ladies on this forum that have far more knowledge than any oncologist i have spoken to.  There are 2 special ladies by the names of Bon & Terri that are always around and we are so lucky to have them, they give invaluable advice as they have been through it all before.

Lets unite and spread the word of ibc and hopefully we can lessen the stress and anxiety for others of this rare aggressive cancer which does not always show up on a mammogram and is usually not in a lump but in sheets.

So please whatever your concerns are or if you just want to contribute with anything, new trials, new treatments, anything! -  please come here and share or ask away!

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Inflammatory breast cancer is an especially aggressivetype of breast cancer that can occur in women of any age (and extremely rarely, in men).

It is called inflammatory because it frequently presents with symptoms resembling an inflammation. However it can present with very variable signs and symptoms, frequently without detectable tumors and therefore is often not detected by mammography or ultrasound.

Typical presentation is rapid swelling, sometimes associated by skin changes (peau d'orange), and nipple retraction. Other symptoms include rapid increase in breast size, redness, persistent itching, skin hot to touch. IBC often initially resembles mastitis.

Only about 50-75% cases have the typical presentation. Symptoms can be completely atypical such as acute central venous thrombosis as the sole presenting symptom.

IBC makes up only a small percentage of breast cancer cases (1-6% in the USA). IBC is often diagnosed in younger women although average age of presentation does not differ much from other kinds of breast cancer (average age 57 years). African-Americans are usually diagnosed at younger ages than Caucasian women, and also have a higher risk of getting IBC. Recent advances in therapy have improved the prognosis considerably and at least one third of women will survive the diagnosis by 10 years or longer.

Symptoms

Symptoms are very variable and may not be present at all in occult inflammatory breast cancer. Quick onset of symptoms is typical, the breast often looks swollen and red, or “inflamed”, sometimes overnight, and are easy to misdiagnose as mastitis. Invasion of the local lymphatic ducts impairs drainage and causes edematous swelling of the breast. Because the skin of the breast is tethered by the suspensory ligament of Cooper, the accumulation of fluid may cause the skin of the breast to assume a dimpled appearance similar to an orange peel (peau d'orange). IBC is sometimes misdiagnosed as an insect bite or breast infection. In the case of IBC, a lump is usually not present as in other forms of breast cancer.

Symptoms may include:

• Pain in the breast
• Skin changes on breast
• Reddened area with texture resembling the peel of an orange (peau d’orange)
• Sudden swelling of the breast
• Itching of breast
• Nipple retraction (flattened look) or discharge
• Swelling of lymph nodes under the arm or in the neck
• Unusual warmth of the affected breast
• Breast is harder or firmer

Other symptoms may rarely include:

• Swelling of the arm
• Breast decreases instead of increasing
• Although a dominant mass is present in many cases, most inflammatory cancers present as diffuse infiltration of the breast without a well-defined tumor.
• A lump may become present and grow rapidly

Most patients do not experience all the symptoms of IBC. Not all symptoms need to be present in order to be diagnosed.

Diagnosis

The only reliable method of diagnosis is biopsy. Mammography, MRI or ultrasound often show suspicious signs; however in a significant proportion of cases they would miss a diagnosis.

Clinical presentation is typical only in 50-75% of cases; and many other conditions such as mastitis or even heart insufficiency can mimic the typical symptoms of Inflammatory Breast Cancer.

Temporary regression or fluctuation of symptoms, spontaneous or in response to conventional treatment or hormonal events should not be considered of any significance in diagnosis. Inflammatory breast cancer is known to respond to antibiotics and progesterone, and reaction to other medications or hormones cannot be excluded.

kelleyb

Hi Liv - I was dx in August 2012 and am currently nearing the end of weekly Taxol/Herceptin; consult with BS next week and MRI to see whether I am ready for surgery or must do more chemo.

What I would like to know - does anyone have a grasp on what the gold standard for chemo for us is?  My onc in Maryland wants to do AC; Dr. Cristofanilli suggests alternatives due to Herceptin.  I had two rounds of TCH and had a very bad reaction but am terrified of AC because of all the horror stories I've seen.  Seems like most gals have had AC, though - is it that bad?

ibcmets

Kelly,

Dr. Cristofanilli is an expert with IBC.  I'm on the west coast and my onc put me on TAC - taxotere, cytoxin & adriamyacin.  We ran PET scans for progress once every 3 months for status.  I had 8 months of this, but only 4 of adriamyacin.  Side effects for me were teary eyes, extreme fatigue & bloody noses.  This chemo worked well for me.  I'm ER+ & later went on Femara.  I had bone mets from start so I also have Zometa, now once every 3 months. 

For me checking status was important because it let me know how things were going as well as my onc.  I'm doing well 3.5 years later even with stage IV ibc and bone mets.

Best wishes on your treatment.

Terri

Anonymous

Dr. Christofanelli (sp) used to be the head IBC doctor at MD Andersen. I would say he sets the gold standard for care. He has years of experience in treatment of IBC>

liv-

hello kelly and welcome, glad you found us.

sounds like you are in the best hands with Dr. Cristofanilli as terri & always hope have said.

i had the initial 6 months of chemo & the side effects were horrid taste, runny nose, minor aches, exhaustion, dehydration due to my own fault.

the first 2 doses were the worst mostly because i ran around in denial trying to be the person i was before being diagnosed.  after a complete emotional breakdown after 2nd dose realised that i had to stop everything and have lots of rest and drink gallons of water when the symptoms appeared. from then it became much easier mentally and emotionally and physically. knew exactly which day it would hit me, which was usually the 4th day in and surrendered and rested and would come good again about the 8th day.

its doable we have all done it, its only a short time out of your life & before you know it, its all done.

best wishes

xx

liv-

hello kelley and welcome, glad you found us.

sounds like you are in the best hands with Dr. Cristofanilli as terri & always hope have said.

i had the initial 6 months of chemo & the side effects were horrid taste, runny nose, minor aches, exhaustion, dehydration due to my own fault.

the first 2 doses were the worst mostly because i ran around in denial trying to be the person i was before being diagnosed.  after a complete emotional breakdown after 2nd dose realised that i had to stop everything and have lots of rest and drink gallons of water when the symptoms appeared. from then it became much easier mentally and emotionally and physically. knew exactly which day it would hit me, which was usually the 4th day in and surrendered and rested and would come good again about the 8th day.

its doable we have all done it, its only a short time out of your life & before you know it, its all done.

best wishes ((hugs))

liv-

sorry duplicated

mandymoo

hello kelleyb, I agree that this is a great thread started by liv (thank you, liv). I have been living with IBC in 2006, and yes, dr C is the guru of IBC. There is also a support group called ibcsupport.org and they are in America. Even though I am in Australia, I find their support group extremely informative. 

Also, in my opinion, there is so much research done concerning Inflammatory Breast Cancer in America, and yet there is none in Australia. The Morgan Welch Inflammatory Breast Cancer Research Program webiste is also a good website to follow. 

Cheers

mandy 

liv-

hello sister mandymoo ((hugs))

hope your well, did you research why only xeloda?

had a look at the morgan welch inflammatory bc research progam and was surprised to see the survival stats for ibc havent changed and little has changed....yuk!!

y Breast Cancer Research Program

Inflammatory breast cancer is a rare form of breast cancer which accounts for only 2% to 6% of all cases of breast cancers, but it is a highly aggressive disease with a poor prognosis (5 year survival rate of 40%). Inflammatory breast cancer is characterized by rapid disease progression and early distant metastatic disease progression. Patients are frequently misdiagnosed and life saving treatment is delayed. The delay in diagnosis and treatment can directly relate to significant progression of disease and decreased survival.

All aspects of treating inflammatory breast cancer – including staging, diagnosis, and therapy – are vastly different than other breast cancers. For women with inflammatory breast cancer, finding a medical team experienced in treating the rare disease is paramount. In 2006, MD Anderson Cancer Center unveiled the Inflammatory Breast Cancer Research Program and Clinic. Just one year later, the clinic and research program were renamed for Morgan Welch, a young woman who died from IBC at the age of 24. Read more about the history of the program.

Although inflammatory breast cancer is the most aggressive form of breast cancer and has distinctive biological features, current treatment is still based on conventional regimens of surgery, radiation and chemotherapy developed for other types of breast cancer. There has been little change in overall survival rates in the last 30 years and there are not therapeutic regimens developed specifically for inflammatory breast cancer. ???????

Our comprehensive multi-disciplinary team is collectively focused on developing methods for identification of specific genomic and proteomic signatures of inflammatory breast cancer. These signatures will guide us in developing tools for diagnosis, identifying therapeutic approaches specifically for treatment of inflammatory breast cancer, and enhancing imaging approaches to assist in detecting the disease and evaluating the effectiveness of treatment for inflammatory breast cancer patients. The ultimate goal is to improve survival of inflammatory breast cancer patients.

today i feel a bit lethargic but must get of my butt and get to the park for walk.

whats everyone one else doing?

thoughts are with you.

xx

mrsnjband

My doctor is in Tulsa, Oklahoma. She diagnosed me in 60 days & saved my life. I have now made it to 5 YEARS!!!! I thank God for her!!!!! NJ

Nel138281

Hi All,

What a great thread.  IBC DX in Sept 2011.  I was very fortunate that they treated it as an infection over the course of a weekend after ER visit, but on Monday the ER surgeon had me in his office for a biopsy.  Within less than 2 weeks I had IBC DX ,  was being seen locally and then in Boston.  Ultimately have had all my treatment at Faulkner/Dana Farber.  I will finish my final herceptin on Feb 15th.  It has been a long year and a half, but I have responed to all well and my onc is very positive.  He alos reminds me not to read info on the internet, most of the statistics are 5 or more years older and things have changed and the prognosis is much improved. 

For anyone in Massachusetts or nearby there is a support group IBC-NE.org.  They meet bi-monthly.  I have been and it is a great place, everyone "gets it"  

I would love to discuss how to get the word out, so mnay do not know anything about this DX.  I never even knew it existed until DX.

As I get to the follow up piece, I am curious how others have been followed after they finish treatment. 

Be well

Nel

Nel138281

Bonnie,

Thank you I will and will check the threads on here.  I was kind of curious about continuing herceptin as I ahve responded so well.

Things to be grateful for, it is snowing here in Mass and my backyard is just beautiful.  Mind you I am not fond of snow and winter, but my yard could be a postcard right now.  My plan is to see many more winters of beautiful backyards.

Now to nudge my son to shovel and then off to work.

Be well

Nel

liv-

bon - sure is encouraging 17 years plus survivor ibc..

mrsnjband - congratulations 5 years and another 50 to go

nel - nice to hear that you were diagnosed within 2 weeks.  as mandymoo said here in australia they dont know anything about ibc.  personally i had 2 bc specialists have a look at my breast when it had all the symptoms, bright red, swollen, pitted, peau d'orange and neither picked it up even after i had been on antibiotics for over 3 months.  one of the bc specialists from a top private hospital asked me if i would mind if he took a photo to show others what a nasty infection looks like..true!

then when finally admitted to hospital a team of 6 breast dr's had a look and another breast surgeon and still was not diagnosed with ibc.

at present the only way to get information out there about ibc is for us to keep talking and educating each other so we then pass it on to others.

xx

Nel138281

Bon,

Thank you for the link.  I see the NP at my onc's office at the end of March so will discuss with her then.  I still have 2 more treatments with herceptin. So very grateful for it to this point!

Best,

Nel 

kelleyb

Bon - yes, please, who do you go to for rads in Rockville?  I don't know about timing, but I always prefer to go with someone who comes recommended.  Thanks!

busywithfive

Hi Liv. Thanks for starting this thread. I have been try to find out information about the affects of antibiotics on IBC. I have not been diagnosed but have had several of the symptoms for 6 weeks. When I suggested IBC, the radiologist told me I was too young, so he was certain it was an infection. I had 10 days of antibiotics. My symptoms improved somewhat over the first couple days but never went away completely. Since, it's been getting worse. Someone else said if it responded to antibiotics then it's not cancer. Nothing else seems to fit though. Do you remember where you got the info about IBC responding to antibiotics??? I have an appointment to see a BS Saturday. I think they are asuming I have a papilloma. I really don't feel like my symptoms fit with it either though. Also, did anyone have their US or mamm show that there was debris in the ducts? Thanks, Melissa

liv-

busywithfive (melissa)  ((hugs)) you poor darling.  you seem to be going around in circles.

the only way to conclude whats going on you need to have a punch biopsy done asap.

this will stop all this talking of infection, it will tell you straight up if it is indeed an infection or something more sinister.  this has been stressing you for too long and you need to find a doctor that will listen to your concerns and give you the respect you deserve.

as my fellow sisters have said you must go with your gut instinct and if you are not getting what you think you deserve medically its time to move on and find someone that will.

and for your question did antibiotics do anything?   no it was a complete waste of nearly 4 months.

melissa dont get fobbed off because of your age.  ibc does not discriminate.

only solution is biopsy.

hope this helps.

xx

xx

busywithfive

Thanks Liv. I called in a favor last night. One of my best friends is friends with the Director of Breast Cancer Surgery at Magee-Womens hospital in Pittsburgh. He is reviewing my films and what has been done so far. He said he would call this evening and help me get to the bottom of this. I'm keeping my fingers crossed. I know I will feel better either way when I finally get some results.

Nel138281

Long time no activity on this thread.  Busy with 5 how are you?    Everyone else?    

Here is my craziness.  I  had a upper respitory infection for about 4 weeks.  Finally broke down and got an antibiotic which I finished a week ago.  I still have a cough, tho not as bad and still have sore ribs and around the side to my back.  All on the same side as my BC.  I know there is some residual  from radiation on one's lungs (finished rads in Aug 2012) and think I may have strained muscles in my side with all the coughing before I got an antibiotic.  I know I should have gone sooner, but really stay away from the whole medical system until I had BC.  So my question is do I call my onc and go over symptoms, am i being crazy and paranoid?    During my initial CAT Scan theere was a spot on one of my lungs that they beleived was from some childhood bronchitis or something.  My first scan following treatment is June 29th.  The spot neeeds to still be there, if it is gone it responed to treatment and oh crap.  So now I am fearful that it was cancer and it has spread as I don't seem to be feeling as well as I did when I finished treatment and can't seem to shake whatever this is completely

Call, ask for a scan sooner?   I am begining to feel really crazy

Thanks

Nel

concernhubby

Nel, as a non-onc physician my advise would be to see your primary care physician first.  It could just be allergies or a nagging viral infection but given your BC history I think a chest x-ray would make sense.

Special thanks to everyone (esp Terri and Bon) for keeping this IBC forum active and informative!

lynn22yrsurvivor

Good morning.

I am new to this site.  My story is a lot like many that are on this forum.   Am happy, and sometimes in awe that I have survived 22 years after being diagnosed at age 41 with IBC stage 3b. 

Though much of the chemotherapy now used I had in my many rounds, the tamoxifen breakthrough had not happened when I was going through my hell.  My treatment plan started with chemotherapy combo FAC before surgery,a modified radical masectomy,  CMF after surgery, then radiation and then a bone marrow transplant (autologous).  All in all, the treatments extended for 18 months.

If there is anyone that would like to discuss this, I am open to it. 

Moderators

thanks for sharing your story, lynn22, and welcome to BCO. 

ibcmets

Lynn,

That is amazing.  I'm 4 years out from stage IV ibc.

Terri

Nel138281

Bon,

Thank you. Still coughing a bit, but I think iti is getting better.  I am seeing a family mmember who is a nurse practioner tonight.  Quick consult will be requested over dinner!

Be well

Nel

shelleyinflorida

Hi. I'm new to this site. This year IBC recurred, expressed in hot pink erythema over MX and partial recon. area, confirmed by biopsy. Staged at IV but w/o indication of mets outside skin and left chest wall. On Xeloda. Does anybody know how far the IBC rash goes? Mine continues to advance despite the Xeloda. Weirdly, I had had sharp pains in the ribs around the treated area; now they are gone. I feel absurdly normal. Only symptoms are sensitivity of the raw-looking skin, which I treat with coconut oil. As background, I was diagnosed with DCIS (ha! Don't I wish) in July 2011; mastectomy and resec. 19 nodes in Sep.; chemo CMF Jan-Mar 2012; partial recon. May 2012; first appearance IBC July 2012; rads Aug Sep 2012; rash Jan 2013, biop. neg., second biop Apr 2013 pos. IBC; Xeloda started.  Any thoughts on rash progression? Thanks, gals. Love, Shelley

milehighgirl

Hi Shelly.  Newbie here too.  I too have had a recurrence.  How long have you been on the Xeloda?  I have to decide by next Friday if I'm going that route or not.  I don't like what I read about the side effects and wonder how it's affecting you?  I'm guessing that if you've just started the Xeloda that it's too soon to see regression of the rash.  Mine is all over the breast and has spread (along with the cancer) to the other breast.  I use manuka honey (use at least 25 or higher) and it controls the tumor and in some cases does knock back some of the rash.  It flares up here and there, depending on whether I cheat on my diet or not.  I'm also interested in an answer to your question but am a few weeks behind you in treatment.  Blessings.  Sue

BigMamaP

I was diagnosed with stage IV IBC Her2Nu 3+++ while pregnant with my fourth child and only daughter in Feb 2008. I was treated by Dr. Christofanilli at MDAnderson. After the baby was born, (very healthy and five years old now), I entered a clinical trial at MDAnderson for a stem cell transplant to address my boney mets in 2009. After graduating from my clinical trial I went to check in with Dr. Christo at Fox Chase. I continue to have herceptin and zometa infusions every 3 weeks as my general protocol. Since the IBC clinic has been sort of integrated into an over all BC Center at MDA, I have decided to move my primary care back to Dr. Christofanilli who is currently at Thomas Jefferson University Hospital in Philadelphia. I am 3 weeks away from reaching my 66th month post dx which as I understand puts me in the 5% survivors club...is this true? What are the facts about life expectancy for Stage IV IBC Her2Nu3+++?  My husband is seeking a mean spirited divorce from me and I am honestly just really nervous as I approach this 5% mark and the decision to leave MDA. I absolutely love and trust Dr C with my life, so I rest assured in that...but TJU isn't ordering as many evaluative scans as MDA routinely does...it kind of freaks me out. I asked for the regs, (chest xray, CT w/ contrast, bone scan, echocardiograph, PET scan, and whatever that nuclear isotope test is), but TJU said just get a PET and some bloodwork done locally (in Mississippi) and send us the reports...you know local radiologists who will write the reports don't really see ANY IBC cases...so what is the use of following Dr. C if an expert team isn't supporting and reporting to him? As I understand it, by 8 yrs post dx only 2% survive...why am I being put on the shelf? I need to be the 2%, I have 4 babies to raise by myself. I can't have a recurrance. I just can't. How do I get more involved attention from medical experts? MDA has sort of lost interest in me over the past year- cutting my scans back to every 6 months- then my head onc began to forget the facts of my situation and almost ordered me to remove my port...suggested that I was all done with treatment...I had to remind him of my dx-  I understand that hitting the initial 15 month treatment is the meat of it all, but what about longterm treatment and evaluation...am I just waiting for an unnoticed recurrance? I've had bone spots pop up in different areas when zometa was reduced...this isn't getting any easier to deal with. I need a mentor survivor. I need to know who is out there like me. Hello, is anyone there who is Stage IV and living beyond 5 yrs? What is your protocol? How do you manage hope vs. anxiety?

Nel138281

BigMama,

Ditto what Bonnie has said.  The stats are much better than what you will read online.  That data is old and not based on current treatments. It takes awhile for research to reach the public/patients about effectiveness.  I have met and spoken to women who are 5, 10, 12 and more out from original dx.    My onc and I just had a discussion about how many new treatments there are since my original DX 2 years ago.  I was dx stage 3 B two years ago but may have recently crossed over to stage 4 (waiting for all test results)  He promises me there are many options for treatment.  And he is pretty straight forward.  You will hear from others with better info I am sure.  But don't give up hope.  Advocate for what you want and need for medical support and treatment

Be well

Nel