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Inflammatory Breast Cancer a new forum

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    Posted: Nov 14 2012 at 7:51am

Dear TNBC Foundation Family,

As many of you know Inflammatory Breast Cancer (IBC) is a very rare, often aggressive form of breast cancer. The idea of this forum is both to educate women about IBC which is often mis-diagnosed as skin mets, mastitis and other conditions and to have women with IBC or suspected IBC share their experiences.

http://www.mayoclinic.com/health/mastitis/DS00678/DSECTION=symptoms


It is essential that women with TNBC who develop IBC symptoms (please see below)
go to an IBC specialist. IBC is a clinical diagnosis and ideally, you need an IBC expert to make that diagnosis.

It seems that 30-35% of all IBC is also TNBC. Scientists are not sure why that is and hopefully research can be done to unravel that mystery and perhaps if this research is successful we can also find out more about TNBC.

There will be a very important conference in Philadelphia on December 1 and 2 in Philadelphia. I would encourage anyone with TNBC and their caregivers to try to attend to further understand what is the latest research on IBC. I will be representing TNBC Foundation at the Conference and will be giving a short talk (5 minutes) along with other advocates. Also there will be a poster presentation on TNBC Foundation.

Here is the link for the conference and I hope some of you can come. Would love to meet you. Registration is $125 compared to $450 for regular participants

http://cmetracker.net/FCCCCME/Files/Brochures/2012.pdf

more information on IBC (originally posted in our Resource section)

Dear TNBC Family,

 

I am hoping that by posting these links below, TNBC women and their loved ones will become more knowledgeable about Inflammatory Breast Cancer, even though it is a rare cancer. It is my understanding that "Inflammatory Breast Cancer is diagnosed based upon the result of a biopsy and clinical analysis of the treating physician.” This statement comes from a booklet called Understanding Inflammatory Breast Cancer published by MD Anderson Cancer Center...I am trying to see if the booklet itself is available online...

 

But here are some other resources that may help determine whether women should have their conditions checked by a Breast Medical Oncologist who is an expert in IBC. The problem is that such an expert is often hard to find.

 

http://www.ibcresearch.org/visual-symptoms-of-ibc/

 

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/inflammatory-breast-cancer/index.html

 

http://www.fccc.edu/physicians/locations/wcc/ibc.html

 

From the Fox Chase link-

 

"Inflammatory Breast Cancer (IBC) is the most aggressive of breast cancers. 


There is rarely a lump and it usually cannot be detected by mammography.  Frequently misdiagnosed as an infection, predominately because of the lack of a lump, precious time may be wasted in correctly diagnosing IBC."

 

I hope this is of some help. I am certain that more women with TNBC will also be diagnosed with IBC. But, in my view, “knowledge is power."

 

some signs and symptoms 

from the MDACC booklet mentioned above-

 

-a breast that appears red, purple, pink or bruised

-itching of the breast

-a tender, firm and enlarged breast

-pain

-change in color of the skin around the nipple (areola)

-enlarged lymph nodes under the arm, above the collarbone, or below the collarbone

-thickened areas of skin and ridged or dimpled skin texture, simple to an orange peel

-swollen or crusted skin on the nipple..

 

I think the most important thing is that any woman who suspects IBC need to see a knowledgeable clinician who is experienced with IBC.  Most of the time it is probably not IBC but it should be ruled out by experts. So please do not rely on the pictures in the link or anything written above...if you think you may have IBC, please go to an IBC specialist...sorry to say this but your regular oncologist may not be able to diagnose it properly.

 

It is also essential that women recognize that you can have IBC and TNBC. A woman with IBC/TNBC was told by her oncologist that it was "impossible to have both at the same time." Simply, inaccurate advice.

 

Finally, IBC is very rare but we have seen, in our TNBC Family, that it can happen. According to what I was told recently by an IBC specialist “50% of the time IBC is TNBC.” and of course the converse is not true...only a tiny, tiny percentage of women with TNBC will have IBC.

 

warmly,

 

Steve

 

p.s. I just updated this thread because since I wrote this last night I have heard from a woman who saw the pictures and said “that’s me” and she is being evaluated next week at a major IBC Center so I am glad the pictures were posted, and at the same time deeply saddened that she may have this disease; but if she does, she at least will have some clarity and perhaps a new treatment plan can be created.

Edited by steve - Nov 14 2012 at 7:59am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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For those of you interested in learning more about IBC there is an excellent book called 

Inflammatory Breast Cancer..an Update by Dr. Naoto Ueno and Dr. Massimo Cristofanilli

http://www.amazon.com/Inflammatory-Breast-Cancer-An-Update/dp/9400739060/ref=sr_1_1?ie=UTF8&qid=1352910801&sr=8-1&keywords=Inflammatory+Breast+Cancer+Ueno

Drs. Ueno and Cristofanilli are two of the world's leading authorities on IBC. Dr. Ueno is head of MD Anderon Cancer Center's Morgan Welch IBC Center in Houston and Dr. Cristofanilli is head of Fox-Chase's IBC Center in Philadelphia.

Unfortunately, the book is quite expensive.

Please share any stories or request any information on IBC on this forum so that we can keep the threads under 'one roof.'

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sandrela Quote  Post ReplyReply Direct Link To This Post Posted: Oct 23 2013 at 6:02am
A study published in December 2011 estimated that, in the UK and U.S, around 27% of female breast cancers are linked to largely modifiable lifestyle and environmental factors numbers.Some reproductive factors, such as age at first child and number of children, were not included in this analysis.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KKarr Quote  Post ReplyReply Direct Link To This Post Posted: Mar 19 2016 at 8:34pm
Hello everyone, 

My mother who is my world, my best friend has been diagnosed with Triple negative breast cancer. Little background.....She was diagnosed with  stage 1 estrogen positive BC In July 2014. Had lumpetomy, radiation and chemo because her onco test came back highly likely it would spread. They removed 8 lymph nodes but came back clear at time of surgery in July 2014. We completed all treatment in February 2015. She complained about pain in breast for many months after. On December 28, 2015 she had her 6 month mammo and it came back that there was a 2cm mass. Her nipple was already inverted at time of mammo.  Her mammo was extremely painful and since then her "bump" keeps growing. The breast cancer center that runs the mammograms said that it can't be cancer since it is in the same breast and basically same spot as her estrogen positive breast cancer. They told it had to be a hematoma and scar tissue even though she had surgery a year and a half ago and no hematoma/ scar tissue was in her 6 month earlier mammo. They told her to come back in 6 months. She waited about 6 weeks and kept calling her surgeon to get in for an appointment because she was in pain and now her breast was changing - growing large, warm to the touch, pink, inverted nipple and very painful. The new ultrasound mid February 2016 ( a mere 6 weeks later) showed the " hematoma" had grew 4x the size from 6 weeks earlier. Now 5cm in size.  They ran another ultra sound and said they would "drain" the large hematoma. It didn't drain so they did a biopsy. It came back triple negative. The next 2 weeks were crazy with doctors and tests. I read up on TNBC and saw a link about Inflammatory Breast Cancer. My mother had ever symptom. We bought it up in one of our meetings with the doctors. They tested her for it. The surgeon called and said it came back negative but 2 days later when we saw the oncologist she said they are clinically diagnosing her with IBC.   I am annoyed that I had to ask about IBC in the first place and that they said we dont have it and now we do.   I dont know if we have 2 separate cancers going on or if we have IBC that is Triple negative responsive.   Has anyone had IBC and TNBC? What was the treatment?  They started her on AC every 2 weeks for 4 rounds , followed by 12 weeks of Taxol.  When do start feeling relief from pain in breast and see the tumor (5cm) plus shrink and know the chemo plan is working?  Thank you for all your support and help!
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Dear KKarr,

In my unprofessional opinion your Mother should see a IBC expert. There is a good one in Chicago.

I am in Chicago tonight...leaving in am. I should have some time to talk to you from O'Hare about 11 am tomorrow a.m.

I am sending you my cell phone in a PM.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Apr 01 2016 at 7:13pm
I wanted to post, although I feel I know relatively little about IBC.  My friend was diagnosed with TNBC in June and passed away last week.  While visiting her in the hospital the week before she died, I saw an awful rash on her arm.  She told me it was IBC.  I was shocked, but it did explain the aggressiveness of her cancer and that it wasn't detected on a mammogram she had two months before being diagnosed with stage 4 TNBC.  

Although, I tried to get my friend to get a second opinion and seek out help from a facility with an oncologist that specialized in TNBC, she stayed with our local cancer center. I do believe this is a good facility, but it's not as equipped to handle IBC/TNBC. She received the typical AC followed by Taxol (not Taxol first as many are now getting), but they were never able to stop the spread.  Within a few months they found lesions on her brain.

My friend was an incredible woman who always put her family first.  I think that the thought of seeking treatment a distance away was intimidating.  But, I do believe that she was dealing with IBC from the beginning and the oncologist didn't recognize it until she well into treatment.  She had a spot under her arm and a swollen lymph node.  It was some swelling in her arm that got her to the doctor in June.  Sadly, by the time they knew she had cancer it was already in her bones.  That spot spread over time.

I guess I am here to encourage second opinions.  I didn't have one, but I am fortunate to have had a TNBC that wasn't as aggressive as some.  I am six years out from diagnosis, and, despite my ignorance, I probably got the treatment that worked for me. By the time my friend was diagnosed, I knew so much more about TNBC and was always afraid that her prognosis wasn't good.  Still, I see her as she was a year ago, before we knew she had cancer, and can't believe that nine months later she's no longer with us. TNBC and IBC are beasts.  We just don't know how aggressive our particular cancer is when we are first diagnosed.  I can only say that looking back on both my cancer and hers, I would throw everything possible at it, and I wouldn't stop until I found a doctor who understood just what they are dealing with. That's me.  I do understand that we are all different, but sometimes I think we just don't understand what we are dealing with because our oncologists don't totally understand it. 

RIP Terri.  You fought the hard fight.



DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 01 2016 at 8:44pm
I'm sorry for your friend, Inflammatory BC is sooo hard to deal with,  and your friend I'm sure appreciates your explanation of your friendship, and what has transpired... we do. and we are thinking of you...
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Dear overwhelmed, 

Sometimes all you can do is try your best to help someone and for whatever reason that help is not accepted. You did your best and that is all you can do. I admire you for trying.

What has truly amazed me over this last decade+ of helping folks as a volunteer patient advocate are the number of women with IBC (most also with TNBC) I have seen (probably a couple of dozen) whose IBC was never properly diagnosed or treated.

There should be a course called IBC 101 and it should taught in every medical school in the country and then maybe some lives would be saved. One woman had been on antibiotics for a full year to "get rid of my infection." Another woman went to a "oncologist to the Stars in Beverly Hills" who told her "I would have diagnosed you with IBC but your breast cancer is TNBC and you can't have TNBC and IBC at the same time." Actually,I have been told by a IBC expert that the majority of IBC cases he sees are with women who also have TNBC.

Each case of IBC, from my experience, is particularly challenging even when the diagnosis is made early and treated promptly but when misdiagnosed it can be truly awful. Breaks my heart.

It is not just getting a second opinion from an oncologist who is an expert in TNBC; it is ideally getting a second opinion from a breast oncologist who is an expert in TNBC and IBC.

with love to all here,

Steve



I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2016 at 2:36am
Steve are there anymore updates on this subject? Ive tried to find more in about what tests should be done to rule out IBC or tnbc of the skin. I have been told i have an infection but too many of my symtoms are similar to IBC. The antibiotics not working. Swelling. Red skin patches. I had a skin preserving mastectomy so there shouldnt be any lymph npdes in this affected skin. All the underlying tissue was removed. Even the nerves are severed so i have no feeling in it. The breast is swollen around a temporary implant. I cant find any information about how that effects diagnosis of IBC.
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2016 at 8:14am
Hi,

In my unprofessional view, it is ESSENTIAL that you see an IBC expert who can help determine whether you have IBC. A diagnosis of IBC is a clinical diagnosis. It is made by the IBC expert, most often a Breast Medical Oncologist. Often a skin-punch biopsy is performed. 

I work very closely with three IBC experts and have introduced many women to them over the last decade. 

I am going to send you a Private Message now with my contact information and would be happy to try and help you. I work as a volunteer Patient Advocate and there will be no charge.

Again, I am not a medical professional and will not give you medical advice but I can try to help you see an IBC expert. Because IBC is such an aggressive cancer, most of the time, the physicians I refer patients to, see them within one week. 

This morning I am accompanying a woman to a consult with a physician who is an IBC expert. If you can respond quickly, I can speak to him about your case, today. 

For reasons that still remain a mystery to me most physicians, from my experience, all-to-often do not correctly diagnose IBC. Perhaps because it is so rare. Perhaps, because it is not taught as a separate course in medical school. Whatever the reason I have seen a lot of missed diagnoses over the years. One woman I helped was on 8 different courses of antibiotics because she was told she had an "infection." This went on for seven months while the IBC continued to progress. This all happened prior to her meeting me. Finally, we went to an IBC expert who gave her the correct diagnosis. 

I also helped a woman who was told by a Breast Medical Oncologist "to the stars" in California that "if you walked into my office today...I would examine you and tell you that you have IBC but you have TNBC and women with TNBC do not have IBC." In fact, it is my understanding that maybe 60% of the time when a woman has IBC it is also TNBC.
It was an incredibly inaccurate statement and the woman suffered because of it.

Again, I can't tell anyone whether they have IBC or not and if they have received a diagnosis of IBC I can't tell them what their treatment should be but at least I can refer patients to an IBC expert and then each person must make a decision about their treatment plan and I often refer the woman to another IBC expert to get a second opinion.

I am a great believer in second and third opinions. The problem is that it is often expensive to travel to another city to get those opinions and insurance companies, at times, are not willing to pay for multiple opinions. Or it is difficult, for a lot of reasons, for the woman to travel and at times folks are simply not willing to travel. 

The mark of an excellent oncologist, to me, is one who embraces a second opinion and makes the patient feel comfortable getting one as long as s/he knows that the patient is going to a NCCN or NCI center. Other physicians, unfortunately, make the patient feel disloyal/guilty by seeking a second opinion. That is extremely unfortunate, in my view.

Some oncologists, in my view, are often arrogant about their abilities. Arrogance is, often, not warranted when it comes to IBC and/or TNBC. One of the top Breast Medical Oncologists in the country, formerly President of ASCO told me about 8 years ago. "I am humbled by cancer."

IBC is extremely difficult to treat. But I have seen several women live far longer than they would have if they had not been properly diagnosed. Others present with very advanced, often metastatic disease and treatment is often, unfortunately, very challenging. 

My attitude is that if IBC is suspected you should see an IBC expert, or even experts, so that it can be confirmed or ruled out. The other challenge is that if IBC is diagnosed a clinical trial may be suggested and often one institution's clinical trial may be proprietary and therefore may only be available at that institution, which may present very difficult logistical problems. It can all be very complex and challenging with, often, no easy answers and certainly no guarantees.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2016 at 3:02pm
Thank you steve. I emailed you to get the referance. I really appreciate your input. Thank you for all that you do to help us tnbc people😁
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2016 at 8:17pm
Ginie: glad to hear your results don't indicate IBC (Inflammatory Breast Cancer) after 2nd opinion.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2016 at 8:31pm
Me too. Thank you steve for your input too. Its important for people to know about IBC and it seems like a lot more Drs. Are aware of it now. I ended up talking to several out here in Seattle and the community seemed very knowledgeable about it so thats good.
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2016 at 5:45pm
great news, let us know how they deal with inflamation, that is not IBC, ok? thanks
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rsprite3 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2016 at 10:26am
I think they were wrong. My oncologist called after i gave him the IBC information. He said to call if I get another rash. He said the biopsy of the scar was not conclusive. Noe the rash is back. Inflamed around the stitches and has started to spread. I have an appointment today with the oncologist again. I have a name of a Dr. With seattle cancer care alliance who is familiar with IBC.  Thanks to Steve on tbis site.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2016 at 5:31pm
We're sorry to hear your Onco hasn't ruled-out IBC Please let us know how you are doing, glad Steve helped you out to figure it out.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2016 at 8:02pm
Sending  HeartHeartHeartHeart lots of prayers your way.  I hope the appointment was encouraging and good.
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AmyL Quote  Post ReplyReply Direct Link To This Post Posted: Aug 31 2016 at 7:55pm
I'm sorry Genie that you're having to deal with this again...what an emotional roller coaster for you! I'll be thinking of you and sending good thoughts and prayers your way.

Many hugs
Amy
Dx Dec '15, 1.1 cm, stage 1A, gr 2, TNBC, BRCA -, 1/16 lumpectomy with red/lift, 2/16 DD A/C x 4, Taxol x12, planed radiation summer '16.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dev72 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2017 at 8:01am
Inflammatory breast cancer is very bad disease. I also prayer to god.
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