IBC Information and Resources

HollyinMich

So many women find themselves here on BCO to find information and support after a breast cancer diagnosis or for concerns that they may have breast cancer. Many times women, like myself, find themselves googling information about their symptoms and eventually make their way here to this site and the wonderful BCO boards. Since finding myself in the same predicament a year ago when I first began having symptoms of IBC I have found some wonderful resources and information on IBC that I would like to share with all of you.

BCO's information on IBC is very informative and can be found here: http://www.breastcancer.org/symptoms/types/inflammatory/

The Inflammatory Breast Cancer Foundation's site is here. This foundation is dedicated on raising the awareness of type of breast cancer.  http://www.eraseibc.org/

ETA: The IBC Network Foundation is a new foundation dedicated to raising funds for research and promoting awareness.  Please check it out here: http://www.theibcnetwork.org/Home_Page.php 

The IBC Project Video created to raise awareness and educate women on the signs and symptoms of IBC.  http://eraseibc.com/blog/2010/10/13/the-ibc-project-video/

Printable brochure about IBC including the signs and symptoms.  http://www.eraseibc.org/pdf/brochure.pdf

Link to the BCO board topic created by Terry Lynn Arnold discussing her IBC map project.  http://community.breastcancer.org/forum/81/topic/771771?page=1#idx_4

Link to Terry's map that stunningly illustrates how many women are diagnosed with this "rare" cancer.  http://www.terrysmap.org

As a note: I put the word rare into quotation marks because I am wondering exactly how rare this disease is vs. just misdiagnosed. It seems since I found myself diagnosed with this rare disease I have met so many lovely ladies also with IBC and it's rarity seems to be found more in it's lack of discussion and awareness. I think we all hope to see that change!

If you find yourself just diagnosed with IBC or concerned that you have the symptoms of IBC, please take the time to read the information provided by these links as I think you will find them helpful.

Edited to Add:  If there are any other links with information about IBC that you know that are not listed here that you think is worthy to share please feel free to post them in this thread.  However, please keep those links as informational and related to furthering awareness about IBC in effort to keep things cohesive.

tlarnold

Thanks Holly for the support. The video is very important to me and I am grateful to Matthew Steinhart for making this for us and giving it to us. Fran Drescher's Cancer Schmancer http://www.cancerschmancer.org/ was the first cancer charity that picked up the video, very support.



Also the map...I admit, my baby. That map helped to start a French speaking IBC support group in Canada and helped to get support to women who were alone in IBC in Australia. I can't wait to see what can come of it, the stories that map will tell of the women with this "rare" breast cancer.

kcrowe

I have been diagnosed with IBC back in March - I am 36 with two young children. Can any one tell me what inflammatory breast cancer looks like as it progresses??? I can not find pics or info any where to what it looks like as this disease progresses? Does rash seem to get better? Does it just get worse???

HollyinMich

There really are no pictures I have found that illustrate progression. The only pictures I have seen are either at the time of diagnosis or after the disease was left untreated and has completely ulcerated the skin. It sounds as if you have a very unusual instance in that you had to stop treatment from your allergic reaction. I certainly can't imagine that these types of pictures that you are asking for would be easily found, because once it is diagnosed almost always the patient begins chemotherapy right away for the disease. For those that have not sought treatment I doubt that a photo diary would exist, because chances are they chose not to seek treatment due to some underlying shame or stigma that they have attached to their problem. 

With that having been said, I would say to look for any worsening symptoms that you already have and be on the lookout for additional nodal swelling in areas that are not already affected. Sorry I couldn't be more help, but there just really isn't this type of thing out there.

HerSister

kcrowe - I remember your dilema about being allergic (& having anaphylactic shock) to Taxol.  Your oncologist wanted to give you Abraxane, but since it's in the same family (taxanes) as Taxol, you were hesitant to get Abraxane.  I just wanted to be sure you knew (in case it didn't come up in your research or from another member) that the reason Taxol (& Taxotere) causes allergic reactions is the chemical solution it contains.  Abraxane does not contain that solution, so is known to be much more tolerable than Taxol or Taxotere.

Here is more about Abraxane from the manufacturer's website (specifically about it being solvent-free): http://abraxane.com/works-paclitaxel-albumin.aspx

I found the following information at: http://www.differencebetween.com/difference-between-abraxane-and-taxol/ 

Difference between Abraxane  and Taxol

Component

Abraxane is based on albumin as carrier vehicle for the delivery of the drug. Taxol is chemical or solvent based.

Administration time

Abraxane requires less time usually 30 minutes than Taxol.  Due to the chemical componenets, Taxol is administered carefully and takes more than 3 hours for a single administration.

Premedication

Abraxane is modified with a natural protein albumin and hence less prone to  hypersensitive reactions. This eliminates the need for drugs such as  antihistamines and steroids before the schedule which prevent the occurrence of  hypersensitivity.

Efficacy

Although there have been no proven studies on the  difference in efficacy levels, generally Abraxane has been found to be more beneficial due to its non toxic nature and speed of delivery of drug.

Side effects

Due to its non toxicity the Abraxane is found to have little or no side effects. Since it does not require premedication, there are no side effects associated with these drugs also.

Survival time

The efficiency of any anticancer drug is based on the increase in longevity or survival time. Abraxane in the recent clinical trials has proved to prolong the survival of the patients by lessening the spread of cancerous tissues to a considerable extent.

Response rate

The complete cure or response rate from the drugs were found to be higher for Abraxane almost twice that of Taxol.

Cost

Taxol  being the first generation drug in chemotherapy and its simple manufacturing is less costly than Abraxane

I hope you have been able to start or you able to start treatment soon!

msjag

My friend has just seen a breast specialist, she was going to urgent care because she had a fever, breast was red, nipple sore, and felt like she had an infection. Breast specialist happen to be at that facility (she is on vacation, and this happened in a matter of two days).  Now she is told she has a bad infection in her body, lots of blood taken to do cultures, and IBC has been mentioned. She is headed for an ultrasound and biopsy. Oh my gosh, do I understand this right, it if is IBC, its already stage 3 and in the nodes?   We were just going to celebrate her 4 year anniversary of being cancer free (middle of chest tumor) and my 1 yr.  it never ends.  Any help, advice would greatly be appreciated.

HollyinMich

If she had a fever then chances are it is just an infection and not IBC.  You don't run a fever with IBC, only thr breast itself gets warm.  Sending lots of prayers for your friend!

leisaparis

Holly is right @ the fever. Does not usually accompany the IBC symptoms.

YES, if it is IBC, it is already Stage 3. Not necessarily node involvement.

Praying for just an infection for your friend. Good luck.

msjag

Thanks for the thoughts and prayers...so far my friend has been given a shot of antibiotics, and feels so much better, breast redness/soreness is going away by the minute.  Still awaiting cultures, appt with her reg oncologist on Friday...I reminded her her son had mrsa about a month ago...maybe she got..it...she is feeling more positve today, me too!!  Thanks so much

itsok

I am newly diagnosed IBC, waiting to get port placed to start chemo, PET scan and a second round of biopsies to make confirm how much of the breast is involved. But first round of biospsies came back positive.

 A week ago I was a healthy mom of three. 

 

HollyinMich

itsok, so sorry you've had to join the club!  I hope though that you find the information you need here to help you on your journey and the support!

Claudia413

Holly has really posted some good information. As a volunteer with the Inflammatory Breast Cancer Foundation (www.eraseibc.com) and a 4-yr survivor of IBC, my thanks goes out to her. Terry Arnold also does some fantastic advocacy for IBC and her map is something everyone with IBC should beg to be on. One day I would love to meet these wonderful IBC sisters in person. We are in several of the same support groups.  Claudia

Anonymous

I've been a lurker on the BCO boards for a little while. Mostly I read and learn...



But right now I'm having a tough time. I have what was termed skin mets from my stage IV TNBC, on and around my neck. But photos of my neck, taken 18 days apart, when shown to an IBC specialist, apparently show a high tendency to be IBC. I have an appointment with him on next Tuesday morning. Because of lack of lymph drainage, I have to "sleep" sitting up, or my face & throat swell to choking point.



I don't know what this means for me now. I do know it is extremely painful, has impacted my voice, and is starting to impact my swallowing and breathing. My neck looks terrible - all red and purplish, hard, swollen. I can't turn my head much.



I haven't read up on IBC (been busy trying to learn about TNBC). Are there any chemos more suited to IBC? What chances of getting to NED, if any?



Don't actually know what questions to ask, even...



Thanks for any input.

Nicki13

Thank You Holly for posting all these link. My mom was just diagnosed with IBC and we are waiting for her PET CT to come back so we know what satge she is in. We pray we caught it early. How are you doing HOlly? It has been a year since you were diagnosed correct? I pray you are winning the fight. Thank you again for all the information. Have a beautiful Sunday!!

ateepay

IBC Fact & Fallacies next show: March 21st, 9pm EDT

 We will be honoring a family who finalized three state proclamations, New Mexico, Nebraska and Iowa, and will have returning guest researcher Dr. Fredika Robertson, Ph.D update us on the latest 'inflammatory breast cancer' news.  She will be taking calls if you have questions.

 

http://www.thruoureyes.org/ibcshow.html

 

Join us for this show, next month will be our 3rd year on air.

 

Patti Bradfield

www.eraseibc.com 

autism_mom

Would it be possible to list some of the more reputable facilities for diagnosing and treating IBC. It would seem that google leads most to BCO right away so having a list of good facilities right here would be helpful. Thank you

trudy-erl

Hi autism-mom:

There are only 3 Cancer Facilities in the World who actually have a specialized Department for IBC. In the USA it is the MD Anderson, Houston, Tx.

I am a survivor of IBC, and have put a lot of effort into my homework. Unfortunately, because I live in Canada, and the immense amount of money I would have had to pay and couldn't....I did not get my treatment there.  I will, however, add that I feel I got tremendous treatment here. I got the most aggressive treatment possible as it is such an aggressive cancer.

Good luck

trudy

MNHarleysMama

I am newly diagnosed with Stage IV IBC, with several lymph nodes involved and bone metaisis. I  have gone just through 3 rounds of AC with Neulasta shot 24 hours after infusion. Have a port. They are discussing Taxol vs. Taxotere for my next rounds with Herceptin starting next month. I have terrible time with Benadryl, and wonder abou Abraxane. Any info ladies? I have also been given Zometa, because of metasis. Scared silly at first, MAD as hell to even HAVE cancer, but now grimly determined to get rid of it. Tentatively scheduled for double mastectomy (even tho only in left breast & lymph) in February or so, dependent upon the need for radation therapy (which I DO NOT want). Mother, both aunts, grandmother all had breast cancer, none had IBC, so removing both to prevent recurrance (aunt/ grandmother had recurrance, metasis and died. Mother/other aunt had double mastectomy, no chemo or radiation, and have had no recurrance and are 10+ year survivors).

ibcmets

Hi MNHarleysMama,

I had same diagnososis as yours in 6/09.  With ibc, chemo is always first.  I had taxotere, adriamyacin & cytoxin at same time for 8 months.  A year later I had bi-lateral mastecomy with reconstruction.  I'm ER+, her2- so I was put on Femara after chemo.  I also have been on Zometa for the bone mets since the beginning.  I did not do radiation.

Each person goes through different treatments according to their specific diagnosis.  I wish you the best with your treatments.  Please let us know how you are doing.

Terri

MNHarleysMama

Hi Terri,

Thanks! I've been struggling since the diagnosis. I actually found a lump, and went for an exam and mammo Oct 9, and zoom, the bullet train just took off and here I am already through several rounds of chemo with my bald head spinning. And bones aching from the Neulasta, for sure. Definitely having some fun SE from the chemo.

It encourages me that YOU are still around, as I am very scared by the IBC survival stats. Or should I say lack of survival???

I have a 2nd PET coming up next week to see how the AC is diong (I can actually feel it working on the tumor after each chemo session, and my breast is not as swollen, almost looking "normal"). I have my fingers crossed.

Meantime, awake tonight due in part to the dexamethasone/zofran combo. Really make me feel like the stay puft marshmallow girl, luckily only have to take 3 days worth post chemo.

liv-

"Doctors" show and she has a foundation that pays for MRI's for anyone with a history of bc in family or braca1 or 2.       www.rightactionforwomen.org

There are places around USA that do self-referral body scans        www.superiorbodyscan.com/

 

PET/CT May Improve Prognosis For Patients With Inflammatory Breast Cancer.    Science Daily website source Society of Nuclear Medicine.    www.sciencedaily.com/releases/...

Have you looked at Paget's Disease of the breasts...something other than IBC to consider as well and possibly rule out at the same time so as not to have to go through duplicate testing. www.cancer.gov/cancertopics/fa...

the page all this information relates to is here >>http://community.breastcancer.org/forum/81/topic/798726?page=1#idx_20

~~~~

Rinna73

Wow, thank you so much for this thread and all the references in it. My sister is facing a diagnosis of IBC, but the delays for a conclusive biopsy result is driving us all nuts. 

There really needs to be more aggressive screening protocols for this disease, because it does not play around. My sister noticed a lump around Christmas, then boom! Two weeks later, she needed emergency attention. What's worse, the doctors and hospitals she reached out to for help treated her condition as though it were a more common breast cancer, not IBC.

Thank god for this board. Seeing survivors of IBC is really giving me courage to fight for her. 

edit. Just read the post that said Holly passed away. God bless you, you beautiful spirit. 

rosebyanyothername

hey all,  i am new to this and am reading posts to figure it all out .  how much to share , or not, how to word it all.

kaeyreed

My sister was diagnosed with IBC and IDC in February of this year.  I am so scared for her.  The treatments make her so sick.  My question is she has had three chemo treatments and she says the cancer has not shrunk.  Is this normal, is it too early or is that a sign it's not working.  I am in CA and she is in OH.  I am so worried for her.  She is so very sick!  I have read a lot on this but cannot find anything that I can understand regarding prognosis.  She can't have mastectomy until probably September.  She said she is Stage 3 but how do they know that without having done the mastectomy?  If anyone can give me any information I would so appreciate it!

ibcmets

IBC is always diagnosed at least at stage 3 because the cancer is in the lymphatics system of the skin.  my onc had me do MRI, brain MRI, bone scan, PET scan as well and found out I had stage IV with bone metastasis.  Other tests need to be run because chemo is always first and surgery occurrs later after controlled by chemo.

Terri

trudy-erl

I find this quite disturbing. I was assured by 2 oncologist, it is extremely rare for IBC to come back into the other breast. I am wondering why so many people get different information and have a double mastectomy. Was I given the wrong information? :-(

I was told IF it returns it would be likely the spinal fluid, or organs; but not the other breast.

Would appreciate opinions....................HELP!!!!!

trudy-erl

To Kaeyreed:

When they found mine, they did all the tests like CT chest, the organs, head, bone scans...everything. When they did the punch biopsy. Overnight I developed a lump the size of a goose egg in my armpit. I was told it was fluid filled, and they did an fine needle aspiration biopsy and yes the cancer was in the lymph nodes and I guess they didn't like being disturbed, therefore th goose egg (dry sense of humour). After 2 chemo. treatments the oncologist measured that specific lump and it did go down every time. By the time I had my mastectomy it had shrunk to where it was only about 1/5 of what it was originally and he said it was a very positive sign.

However, you must remember each one of us is so different, you simply cannot compare. I believe she needs to ask her Oncologist...always ask questions to the Oncologist, this discussion board, others who have had it. I did my homework and learned so much about IBC. There are also various types of chemo. cocktails that may work better. She (and probably you) need to have a long chat with her Oncologist and MAKE notes. There is too much to absorb when one is so upset.

If I can be of any help at all, please private message me......

Hugs,

Trudy

75BabyBear

Hello,

I found this board while searching for information on IBC primarily early stages. I am trying to find a Dr. to make an appointment. I am waiting for a call back from one clinic. In the mean time you all seem so knowledgeable and kind so any thoughts or suggestions would be appreciated. My story starts in February of this year. I noticed some minor breast changes. I all of a sudden had this off red mark on my left breast that looked kind of like an irritated bug bite (I am going to try to attach a picture of this mark I had at first). It didn't itch and didn't have a bump like a bug bite. I regularly do self breast exams and know it had not been there a few days before. I also started noticing a slight pain along the lower side of my breast up into my armpit. Not terrible although if I did a lot like vacuuming with that side it would get slightly more uncomfortable. I had recently lost about 60lbs and my breast had gone down a size and had a lost of loose skin. But The left one just seemed a lot weirder looking then the right. Another odd thing I noticed if I was wearing a bra rather than when they are hanging free so the skin is pulled tight when your not wearing a bra. If I poked or pinched my left breast that was having the odd symptoms while wearing a bra it was kind of like clay and it would stay that way and not spring back for longer than normal. The skin would stay pinched or poked in.

If I did the same to my normal breast it right away start to go back to normal. So I made an appointment with a breast clinic. I thought with a well respected Dr. But I saw a very young nurse practitioner. She said I pulled a muscle and had an abscess that I just never noticed that has healed and she didn't see anything else to be worried about. She said they always order mammograms and targeted ultrasound for all patients as a precaution but there was not hurry and I could go when ever because she didn't think I needed them. But she said it wouldn't hurt to get one as a baseline since I would be 40 in a couple years anyhow. I was 37 at the time of this appointment. I turned 38 in September. She said I could take a couple months if you want. She was really kind of talking down to me and treating me like I was a hypochondriac that saw something online and freaked out and wasted her time! I had originally planned to go have the tests done. But then the day of my appointment I had to cancel because of an urgent issue regarding my son. I then decided I didn't want to deal with this Nurse Practitioner again anyhow and since she would be the one reading any results I wasn't going to reschedule the tests. I decided the best thing to do would be to wait and see if I had any other symptoms come up. I figured if it was IBC from what I read it would be only a matter of weeks and I hadn't noticed any new symptoms. So I started to believe this Nurse Practitioner that it was nothing. I thought maybe hormonal breast changes or Maybe some odd symptom of my Fibromyalgia or RA which I have had for years.

So weeks turned into months and although I continued to have all the symptoms that started in February but they did not seem to change. They bothered my husband and mother who kept wanting me to go back in. But I did not want to go and be humiliated again. I had decided I would just wait until I noticed any changes. I really believed by this time if it were something like IBC I would have seen more changes by now. Then a couple of weeks ago it seemed like the pain seemed a little more consistent and slightly more uncomfortable especially if I slept on it. My husband really started pushing me to make an appointment. Which I kept saying I would but I continued to put off. Then a few days ago because my breast seemed slight tender all over more than usual I wondered if I was maybe getting more milk in than usual my youngest is 14 but I never stopped lactating for some reason. (I have had mastitis before and I know this is not it, I have also been on several courses of antibiotics for different issues since this started in February that were they type that would have treated mastitis. So if that were the case it would have been cleared up by now.) anyhow usually I only get small amounts and it is a clear to white discharge. But I was get a small amount of a brown liquidy type discharge but only a small amount. Then last night as I was getting dressed for bed in my bathroom, after a long and stressful day. (I had two teeth abscess badly overnight Sunday night on opposite sides of my mouth these had both already been treated with antibiotics and had cleared up and I was working on getting in have the teeth taken out because they can't be saved by root canal they are too brittle. Anyhow it was kind of odd how quickly this infection came on and two different places at once. So I was at the ER for several hours last night getting antibiotics.) So I was getting changed in the bathroom to not disrupt my sleeping hubby and I noticed like the left breast that I had been having problems with had this raised area along the cleavage side of my breast that looked more white and swollen. So I took a closer look and lifted up my breast and noticed these rashy red streaks and the skin underneath looks all welted. This morning I have also noticed that although it doesn't seem like my nipple has changed much the left side of my nipple the areola is denting in a bit and my nipple is leaning more to the left. It is only a slight change but I am certain it wasn't like that before! I am going to post pictures as well, minus the nipple. I know my breast did not look like that the other day. I pay very close attention to my body and ever since February I have been watching it carefully and doing self breast exams very regularly! Seeing this new changes is very scary since they do seem to look very much like the few pictures and diagrams that I was able to find of the early stages of IBC. When this started in February as others have mentioned I could only find pictures from after diagnosis when they were very swollen and further along in the process. Thank you to anyone in advance for taking the time to read this and for any thoughts and or suggestions. I wouldn't mind anyone telling me this does not look or sound like IBC! I in fact hope to hear you guys don't think this fits and that I am just convincing my self that this is what I have going on! Because I am really scared!

The top three pictures are current taken last night of the new changes. The bottom picture is the only one I can find from when it began in Feb of the first red spot that developed. I know I took others of the weird way the skin could stay poked in but couldn't find any!

IBCnurse

A few additional resources to add to the list for inflammatory breast cancer (IBC):

--This National Cancer Institute fact sheet is a great basic resource and can be easily translated into Spanish with a click on the website.

https://www.cancer.gov/types/breast/ibc-fact-sheet

--The Inflammatory Breast Cancer Research Foundation, incorporated in 1999. Mission is to improve the lives of those touched by inflammatory breast cancer (IBC) by tenaciously fostering innovative IBC research, creativily educating stakeholders of all kinds and tirelessly advocating for both current IBC patients and survivors. Volunteers provide support/education via phone and email. 1-877-stop ibc  information@mail.ibcresearch.org

  http://www.ibcresearch.org/

Here's a great video by Dr. Beth Overmoyer of the Dana Farber Cancer Institute IBC Clinic giving an overview of IBC.

 http://www.dana-farber.org/Health-Library/What-is-Inflammatory-Breast-Cancer-.aspx

I've been working with IBC and other BC since my own diagnosis in 1994.

Hope this is helpful!

Traveltext

Those interested in IBC might like to join the IBC Lounge thread here.