Seeking Help for IBC
If you are seeking help or are looking for answers from others dealing with Inflammatory Breast Cancer, here is the place.
A new IBC clinic has opened in Arizona, directed by Dr. Julie Lang. The most direct way to schedule a patient to see Dr. Lang is via her clinic at the Arizona Cancer Center at Orange Grove 520-742-4183.
If a patient needs to see any specialist at the Arizona Cancer Center, they may call 520-694-CURE for an appointment.
I got my MRI results back and they found a small lump The doctor still doesn’t think its IBC but my breast is still swollen so I was like we are doing a biopsy on what you found. I am scheduled to do a needle biopsy at the end of this week. Should a skin biopsy be done as well A question here what else other than a lump would be shown on an MRI if its IBC
Thank you for responding I will talk to him again on Monday about the biopsy
Hello Michelle,
I am so sorry you are having this trouble. At the moment I am contacting one of the IBC World Group to see if there is a doctor in your area familiar with IBC.
I will get back as soon as I hear. Just remember, he wouldn’t be going in blind. IBC is in the skin, so just because there is no lump, doesn’t mean they cannot biopsy the skin in the area you are having issues. All the best to you.
I am 37 years old and I live in the Caribbean. I have no children. In Septmeber I went to my doctor my left breast would feel warm at times and I would get a tingly/itchy sensation under my breast and at the side of my breast as well as the nipple area , my doctor put it down to nerve endings. My breast ultrasound showed no lump, just fibrocystic breast. I went back to him on the 1st of November because the warmth did not go away, a week after that my breast was swollen and I experienced great arm pain. The arm pain has gone away but my breast is still swollen (I am not experiencing any pain in my breast). I did a breat MRI last week but I have to wait 3weeks for results. Could this be symptoms of IBC. My doctor however does not think I have IBC and I have asked him to do a biopsy but he says he will be going in blind. Should i still insists on a biopsy. Please help as there so little information about IBC here in the Caribbean
I had already tried MD Anderson but they do not accept my insurance and to go there for a second opinion & treatment plan required a deposit of $21,855 that I do not have. Thankfully I have come into contact with Marilyn K. at your foundation and she is trying to reach Dr. C about my case. I hope you are right in that I found it early enough and I get the right medical information in time. Thank you so much.
Dear Dee,
I am so sorry you are having to deal with this, after just going through chemo, but glad you found a place where we can hopefully help you a bit. There are IBC specific clinics and doctors in the U.S. now, as you can see by the members of this foundation on our medical team. If your doctor is unclear how to go forward at this point, you can refer to: Fox Chase IBC clinic in PA; MD Anderson IBC clinic in Houston TX; Seattle Cancer Care Alliance in Seattle; also Dana Farber in Boston, IBC clinic.
You can also call our toll free line and speak to one of our team if you need assistance. 1-866-944-4223.
It sounds like you caught this early, which is good.
I hope this helps, and let us know how you go.
I woke up one Saturday to find two new lumps and the bottom of my breast was red. This happened just 4 weeks after finishing chemo from my first breast cancer (infiltrating ductal carcinoma and DCIS). That monday I called my doctor and he said to come and so he could see what I was talking about. He said it didn’t look like cancer but would do a biopsy to make sure because I was due to have a lumpectomy just a few days later. He called 2 days later to give me the bad news that it was cancer and he couldn’t believe that I got it so soon after chemo. I told him I was concerned about IBC and he said the path report called it dermal invasion and sent me to my oncologist who was also in shock to see that I had more cancer so soon. It took several conversations but they finally said it was a secondary IBC and because I had just finished chemo they have been unsure what to do – more chemo or surgery. My pet scan shows it only being in my breast and lymph node so far but I am getting nervous about the time.
Dear Robin,
I know what you are going through is scary, and please pay attention to that fear. It is imparative that you get the symptoms that you are experiencing defined and ibc ruled out. First go to the biggest hospital in Bayonne and ask to talk with the oncology social worker. That is free, no insurance required, and that person can help you get a program to help pay for what you need. Also the social worker will know all the doctors in the area, please ask for a referral to a breast specialist, or breast surgeon. Then print off some imformation about ibc, from our website or any of the links that we have, take that with you to the doctor that you are seeing, insist that they test you to rule ibc out. Ibc is aggresive and fast, so time is important. There are other benign reasons for your symptoms, and I am hoping that for you, but if it is ibc, then you need to know and know NOW. The tests that will identify ibc are biopsy or MRI. With no insurance they probably won’t do an MRI due to the cost, but a biopsy is a great option. Please keep in touch with us, let us know what you discover, we will be keeping you in our thoughts and prayers.
I am on my second does of antibiotic had a mamo and sono and nothing came up I have a lump behind my breast that is now much bigger then it was my breast is red and itchy and at night it appears purple.. the surgen said he can not operate due to it looks infected so fifth day of antibiotic and nothing is happening more itching burning feeling and what bothers me the most is I have no health insurance I live in Bayonne NJ
I felt a lump behind my nipple the first week in september. In 1998 I had a lump removed that was not cancer in the same place.. I am now on my second antibiotic had a mamo sono and nothing came up… now a large part of my breast is red itchiy it hurts when i get cold and at the end of the day it appears purple. its much bigger in size. the surgen said its not cancer but can not remove because he believes its an infection. I am on my fifth day of antibiotic and its still not gone. I have no insurance and am scared to death
This is a long needed web site. I was diagnosed with IBC in May 2005 stage IIIB. So far so good. There is so little information known about this disease we all need to do our part to educate the Health Care Professionals as well as our Congressmen and women. I feel and pray for all of you going through this disease. We are a small close knit group of survivors and need to stick together. God bless you all.
Chris,
It takes a while for the incision to calm down and quit hurting and the port has been attached to tissue under the skin, but know that it will pretty soon. Watch how much you pull on it, like changing clothes, raising your arm and sleeping, that can keep it irritated. Ask what you can take, ie Advil, for the pain and to sleep. You should definately check with your doc about the bandages, there should be something else that they can do to protect your skin. The nurses are a great source of information on issues like that. Please keep in touch, you are in our prayers.
Hi Nancy
I forgot to ask I have to keep bandage on my breast til the incision closes up the tape has started making my skin blister and is very red. The silk tape isn’t as bad but the paper tape is awful. Do they make a tape that won’t blister my skin and literally take it off because I think I am allergic to most glue on bandaids and tape.
Chris
Hi Nancy
Had my port put in yesterday hurt really bad couldn’t sleep last nite
How long does it take not to hurt. Also they done a skin biospy. I am a side sleeper so I couldn’t sleep on either side because my breast hurts and the port too. Finally went to my recliner to sleep.
I had my MRI and Pet Scan today. Go to Cancer Dr tomorrow to get all my results. Crossing my fingers it hasn’t spread. So pray for me that at least it hasn’t spread and caught the IBC fast enough. I start chemo next week.
Thank you for your support
Chris
Chris,
I was 47 when I was diagnosed. I did not have any lump, just what I thought was a bug bite, itching and swelling. I totally understand that the port insertion is scary, I remember when I got my IV just before they were to take me back and put mine in, I thought, “Oh my God, this really is real and happening to me. They didn’t mix up the tests.” I kept thinking I was going to wake up and find out that there was a huge mistake. But it really sounds like you have some good doctors that are treating this with the speed and attention that it deserves! You hang in there, this will be tough but you will get through it. You are young enough to survive the strong treatment and old enough to have passed the “body still growing” stage. Keep in touch.
To Nancy
what age were you went you were told you had IBC?
I am 42 and I said I guess this is early bday present. My bday is next week.
Also wondering did you have the lump ? I know it says most ppl with IBC dont have a lump. Mine is over 8 cm already. They did say it had infection inside the tumor which they drained.
Thank you Nancy for your support I will be calling . They called me today I have to get port in the morning. Really scared about that its kinda eye opener that this is really happening to me. I go Thurs to have my mri and pet scan then go to cancer dr Fri to get my results and treatment plan.
thank you alot
Chris
Hello Chris,
I am so sorry that you are going through this. I am a 12 year survivor of ibc, so I do know what it is like to be confused and overwhelmed. The speed of the testing and treatment is a really good thing for this disease, which can be aggressive and fast growing. Almost all ibc patients are staged at 3 and above, I was a 3B. Thank goodness that they are getting started with your treatment right away, that is excellent for you. The complete results of your tests will give the doctor the information to select the proper treatment plan for you. I thought mine was a bug bite, went to the doc and within a week was in treatment. If you would like to speak to someone one on one by telephone, please don’t hesitate to call our 800 number. Claudia or I will be more than happy to talk to you in depth. I know this is really hard, but know that there are women who live long happy lives after getting the same kind of news that you just got. The journey won’t be easy, and we are here for you, we have experiences and hope to share with you.
You will be in our prayers.
My name is Chris I had started feeling bad around the first of August this yr. I was runnning a fever and didn’t feel well and my right breast was hurting. I continued getting worse the pain became nonstop and large lump formed in my right breast you could see.I went to ob gyn dr he said he thought it was breast abcsess so he put me on antibiotics said come back if it wasn’t better. I continued getting worse and redness of my breast and losing weight. Dr sent me for mammagram and ultrasound he said looks like abscess so he sent me to surgeon and I went in on Oct 4th to have it drained. I had to go to surgeon last thurs to get packing out and see how I was. He said I dont have good news you have cancer and have to go to cancer dr asap to start treatment. I went to cancer dr still in shock and he said it is IBC and im already in stage 3 wont know complete results til all the tests come back.I am so overwhelmed with how quick they doing tests and gonna start treatment next week. Scared and confused need someone talk to
Chris
Hi Sunny,
I am so glad that you wrote back, yes, yes, I think that you should go forward with an examination. Unfortunately ibc does not have “typical” symptoms and they appear differently in each woman, it strikes younger women and I do not want you to be one of those. This disease is fast and ruling it out as quickly as possible is so very important. You have the suggestions I gave you for finding financial help, please check them out, there is help out there.
Hi Nancy,
Thank you for your support. I am 23, and I live in NJ. If I’ve been itching for a week now, I should’ve seen more symptoms by now, no? I have no inverted nipple, and the itching comes and goes (more so goes when I put on cortizone). There is no dimpling, and no thickening of the skin. I don’t know if it’s because I don’t want to face going into the doctor and in denial that this is even possible for me, but I find that I’m not as anxious now as I was when I first started researching. Should I still go forward with getting it checked out? I’m more worried about financial aspects than anything else.
Thanks again for your support, it means a lot.
Hi Sunny,
I am a 12 year survivor of ibc and have been doing lots of research and studies since my diagnosis. I will tell you how I feel about what you told us. I am not a doctor or nurse and every women is affected differenctly, this disease is tricky. There are lots of benign reasons for itching, but of course, ruling out the one that is not benign is critical. I was not overly concerned about your story until you said that the nipple is tender. I definately recommend that you get it checked out. I know that you don’t have insurance, but there are several things that you can do to get help. Most states have a breast and cervical health program that covers uninsured women. The American Cancer Society and Susan G. Komen also have assistance. If you do not know what to do, get in touch with the largest hospital in you area, call and ask for the oncology social worker or patient advocate. These people will know all the programs for assistance in your area. Once that is done, print out information about inflammatory breast cancer from our site and take it with you for the examination. Make sure that the doctor knows what you are focusing on. If you don’t mind, I would like to know how old you are and where you are located. If, hopefully not, this is ibc then time is critical, get it ruled out as soon as you possibly can. Please keep us informed, we all hope for the best for you.
Hello,
I hope you will help bring some ease for me- My left breast has been itching a lot. It gets really red (I think from my scratching), but other than the redness and itchiness I don’t have any other symptoms (inverted nipple, breast enlargement- although my left breast is bigger than my right it’s always been bigger, pain or swollen ducts). I put cortizone on last night and it seemed to ease the itching, but it itched a bit today. I did have some itching on my back (right side), seemed like some sort of a rash, but went away. Now, I have this itching and very sensitive nipple on my left breast. Should I be worried? I have no health insurance and have heard breast biopsies cost anywhere from $1000 to $5000. Any information/suggestion would be helpful.
Anxious,
Sunny
I am wanting to share my story about IBC. In January 2010 I noticed my left nipple was inverted. I went for a mammogram and ultrasound to be told they were normal and was advised to “keep an eye on it” and reassured there was no cancer present. I had been biopsied 2 yrs prior for micro calcification in the same breast, also had a fibroadenoma present and had a family history of my mother having a mastectomy for ductal breast cancer at the age of 38yrs. Feeling reassured I moved from my home country of New Zealand to a wonderful new job in Dubai (along with my husband). The nipple inversion gradually got more pronounced and a slight swelling appeared, but I felt reassured from my February check. By June my breast became more swollen and painful. I saw a breast specialist and was biopsied on the same day, along with a repeat mammogram and ultrasound which showed very advanced breast cancer. I had no redness present as traditionally happens with IDC. I returned to NZ 2 days later for treatment and have since found out I have liver and bone metastaces. I am currently receiving chemotherapy and herceptin. If in February this year I had received an MRI and biopsies I am convinced my prognosis would have meant many more years and so I encourage anyone with an inverted nipple, thickening, swelling, pain and redness or any concerns to keep pushing for further investigations until they get answers. I put things off for too long despite having a gut feeling things were not right.
Tracey,I have had some of the same symptoms you describe with the burning and the heaviness in the breast.I was treated for mastitis in December of 2009 and the original symptoms went away (nipple itching and red marks on the surface of the right breast);however since then the symptoms I am experiencing have changed to a burning,heavy feeling and at times severe pain in my right breast,armpit and shoulder.I have been in denial and have finally made an appointment witha vascular surgeon for Monday,August 2nd and am scared as hell!!!!!!
Tracy,
There is definately something going on with that area of your body. I cannot tell you if it is ibc or if it is not. At this time the only way to rule out ibc is a biopsy, and you do not have a definative area to biopsy, or an MRI. An MRI is a very expensive test and some insurance will not do it for diagnostic purposes. What I can suggest is that you print some information about ibc from our website and take it to a breast specialist, insist that it be ruled out. The symptoms that you are discribing are not the typical ones for ibc, however, every case is different with this disease. We would love to keep in touch with you and know what you find out, and our hopes are that it is not an ibc diagnosis, but something simple and easy to treat.
I have had some burning and pressure type feeling in my right breast since March. The pressure seems to come from under my arm as well as below the collar bone area all the way into my breast. I have done a mammogram and 2 sonos with a general breast suregeon. They all keep telling me i have no cancer but they are also looking for a lump. It feels like i have inflamation and pressure in those areas. I have no redness or swelling at all my breast looks just like the other one. The only difference is that it just feels heavy on my chest and it burns. Any recommendations would be so appreciated. I just found out about IBC, because a friend of mine has a friend that was just diagnosed with IBC. Many Thanks, Tracy
Andrew,
That is the best news ever!! So glad that you got back with us to let us know. My heart is singing for you both, what a great Independance Day. Thank you for the thoughtful words, we work hard to be of assistance where ever and when ever we can.
Andrew I am so glad this was a false alarm. And, also glad that we could help. Thank you for your so very kind words. Helping is why we do what we do. Thank you for sharing your news. I hope you can enjoy your July 4th with a breath of relief now.
Patti
Just thought I’d provide an update on my wife — one, because the people at this site were so helpful, so fast, and two, because I hope my info can help someone else down the road.
After two weeks of tests (mammogram, ultrasound, MRI and finally a skin biopsy), the results came back with absolutely no sign of cancer. Huge, HUGE relief. Admittedly, we still don’t know what’s causing her condition, but here are the facts for anyone panicking like we were:
– The puffy, pitted, slightly bruise-colored swollen skin on her breast did not show the dense thickness that IBC typically comes with.
– Her condition coincided with a surgical removal of some fibroadenomas (fleshy benign lumps), the incision of which was in the vicinity of her armpit. So it would appear that there is some weird healing going on that no one can quite explain.
– Puffiness like my wife’s is typically related in some way to the lymph system (like IBC), but can be caused by some sort of physical injury/damage to a lymph node. I’m no doctor, but I believe there may yet be a connection between the surgery, my wife’s lymph node and the puffy, dimpled skin my wife is seeing.
Sorry for the long post. I just know I was desperate for information two weeks ago. This is mine.
Nancy/Patti, thank you again for your outreach and support. My wife and I will be making a donation to your cause. You are obviously caring, genuine people dedicated to this effort. May whatever spiritual force you believe in bless you both.
Sincerely,
Andrew
Charlene,
My deepest sympathy to you. I wish that you could have known that each large hospital has an oncology social worker who works with patients that need help due to lack of insurance. The department of health has programs in every state that could help you. Are you going forward with any kind of treatment? You could see what is available to you through the department of health, American Cancer Society and Susan G. Komen. You do not have to give up now, I have known women who are stage 4 with metastasis who have beaten the odds. Please know that we will hold you in our prayers.
Many many thanks, Nancy, for the support. You don’t know how much your rapid response means. I’m sorry that you’ve had to deal with the disease. It’s obviously terrible and terrifying.
We got in yesterday to see my sife’s (trusted) GP, who was optimistic about the diagnosis, but who is helping to make sure we get in to see the hospital’s breast specialist within the next couple of days. We’re feeling at least a little better.
I’ll keep you posted as I know more. Thank you, again.
Andrew
I tried for three years without insurance GynDr,Mamogram,Neuro Dr. with 12 3cm lumps,pain, drainage,every time I could cough enough money to see someone else. Well I went to a walk in and saw a ARNP he said what the hell is this ? I said I think IBC he sent me to have a biopsyand of course now I am terminal with mets to bones, back, hips, ribs,feet. Please pass the word breast cancer hurts. I have largs lumps in my neck wich I know is not the norm. Congrats to the ARNP and thank-you now I can settle my affairs.Charlene Miller
Hello Andrew,
I am so sorry that you and your wife are going through this. I am also so very glad that you are getting something done about it right away. Yes, you are right, ibc is very aggressive and sometimes moves at lightning speed. I, myself, am a survivor of this disease and would advise you to find out as soon as humanly possible. A few days could make a real difference, I do know that it will make a huge difference in both your peace of mind. If the recommended doctor is not available, go to the best breast specialist in the largest hospital in your area. Since you are the one that is paying the doctor (or you insurance of course) they work for you, take control of the situation and demand to get in sooner. I have literally sat down in the office and told them that I will stay there until I find something out. Amazing how fast they can more in that situation. No one wants to be a bully, but this is her well being, you have that right. Please keep in touch with us and let us know what you find out. Our thoughts are with you both.
Anyone have advice (or at least reassurance) they can share? Five days ago, my wife’s dermatologist told her that the bruising and pitting that have developed on her breast are not skin related, that they are signs of peau d’orange, and that she should see someone immediately.
Obviously, we are both panicked and trying to get in to see a recommended doctor ASAP, but getting on the schedule has been difficult. And every day that passes we are getting more scared and desperate.
Can anyone comment on whether a few days can make a difference with IBC? I’m confused and unsure about what to do. On one hand, it’s only been five days and I can imagine every person whose ever gone through this wants immediate answers and attention. On the other, if IBC is truly as aggressive as I’ve been reading about, I’ll do anything, make as many calls as I have to, to get my wife in to see someone sooner.
Thank you to anyone with guidance they can offer.
Andrew
Oh I forgot to mention one important thing; my doctor told me that IBC symptopns do not get better; they only get worse but I have read differently online. I even expressed my concern to him & shared with him what I have found online…I have found online that the symptons do get better just not completely. But the swolleness & redness can decrease tremedously and thats why this is often misdiagnosed as an infection when in fact it is not an infectionl it is IBC. Is this true or what are your thoughts to anyone following this? Thanks so much
Claudia and all…
Spoke to my doctor today and they did do a dignostic mammo; he said everything looked better & nothing appeared other than some calcifications but recommended me do another mammo in the fall. He also mentioned that he thought it was a great idea to follow up with a breast specialist and let her make the decision to do the biopsy. Hopefully she will agree to it. Will keep you posted once I find out on Friday. Thanks for allowing me to share & I love reading about everyone elses progress. Thanks! Chrissy
Claudia,
Thank you for your feedback. I did not know there was a such thing as a diagnostic mamo. I will definately ask for this. Will you all posted this week with my upcoming appt. this Friday with a breast specialist. Is there anyone other than this who I should be seeing. A coworker mentioned a oncologist. I am new to this and am learning as I am going. Thanks for you all your help & prayers. I will keep you all in mine too! Thank so much!!! Hugs too! Chrissy
Chrissy and Tiffany,
I am so sorry to hear what you’re both going through. It’s a story that we hear over and over, way too often. I would insist upon whatever type of biopsy would be best to “rule out IBC”. My doc insisted upon three 10-day antibiotic treatments before she agreed to an ultrasound and diagnostic mammogram. The diagnostic (not routine) mammogram showed that I might have the sheeting or nesting of tumors which is associated with IBC, and said that I should get a biopsy to see if it was IBC. With the diagnostic mammo, they were specifically looking for IBC.
Both of you keep posting and let us know what’s going on. I wish you both good luck. Big hugs from South Florida.
Hi Tiffany and ALL! I am going thru kind of a similar situation as you Tiffany & would love it if you kept me informed of your progress & treatment.
I woke up 2 mo. ago in severe pain. As the day unfolded, my left breast swelled up so much (almost twice the size of my right) & was so red on the left part of my lt breast. I could barely walk. I drove to the ER the next morning. I was admitted immediately at Piedmont here in Atlanta; which they have the Doris Shaheen breast center. I stayed for 3 days.
The 1st day my initial doctor in the ER had to call in a surgeon to take a look for a second opinion. The surgeon took over my care from that point forward. He immediately sent me upstairs to the breast center for a mamo & ultrasound. I had no idea at the time what they were looking for; it was not until last week that I went for my 2nd mamo & ultrasound that the tech informed me that they thought I had IBC. I was put on antibiotics thru an IV in the hospital. They basically treated it as if it was an infection. They are still unsure. I have followed up with my gynecologist and the surgeon since. They both still felt a lump and some inflammation.
In the meantime, I already had my 2nd mamo & ultrasound sched. & to rule out all the scary stuff as my surgeon put it. They wouldn’t do a biopsy in the hospital because they all said if it was an infection, it could spread like wild fire due to it being on such a fatty tissue. The swollenness and redness lasted about 4 days then went away but not completely. Like I said earlier, I still have very little inflammation and soreness. When I went back for the mamo & ultra I was only told by the doctor there that everything looked better but to come back in 4 months for another mamo. I am a bit disappointed because I want to know why this happened. Was it a bug bite? Is it just an infection?
I am only 32 so I feel that some of the doctors and radiologists I have encountered are blowing it off and treating and believing its only an infection but deep down I believe its more than that. They all keep calling it mastitis. Last week at my 2nd mamo & ultra, the tech remembered me & the day I was there and told me how they were called by the ER to inform them of me & that she & all the other techs thought this woman must be really sick with IBC & were all shocked when I was wheeled up there & how young I was. They had never seen anything like that. The tech also informed me she had never seen anything like this before and not to listen to the doctors if they tell me its fine and to make sure I keep at this because I’m am really sick and that nothing just gets better, there has to be a reason it started. She pretty much scared the crap out of me but I do appreciate her honesty. She was prepping me for the days & months to come, I feel. That was scary news.
I have an appt. with a breast specialist this week and want to know the same thing, should I demand a biopsy? It has been nearly 8 wks since my hospital stay. I still have very minor inflammation but I feel if it is just an infection & they really thought that, why have they not continued with antibiotics & seems that the antibiotics would treat it and make it go away completely. Both sisters of my grandmother (mothers’ mom) had breast cancer, one in her 40′s & one in her 50′s. Breast Cancer does run in my family; I am unsure if they had IBC but my family is researching to find out the kind of breast cancer my aunts had.
Please let me know anyone if this happened to you & how did you deal? Thank you for letting me share and sorry for so long, just trying to reach out & this is my 1st blog. Thanks! Chrissy
Hi Tiffany,
It is wise of you to continue to rule out ibc. The surgeon should take a biopsy of the affected ares. I am sorry that you are going through this, there are several reasons for those symptoms besides ibc, but for your own peace of mind ruling it out first is important. I am hoping that it is not ibc, but if it should be, then time is critical. Please keep us posted on your status.
I noticed a mark on my nipple about 3 weeks ago and thought it was bug bite or a billed hair. Then last week I noticed it has spread almost around my nipple. I went to my doctor and she put me on antibiotics and ordered a mammogram and ultrsound. I am on day 5 of the antibiotics and the redness has gone down some but it is still there. I also have itching, sharp pains into my arm pit, it is swollen but just a bit, and nipple discharge. Nothing showed on either the mammogram or the ultrsound. I have an appointment with a surgeon tomorrow. What should I ask him to do to rule out IBC. I want to be taken seriously but I am not really a demanding person. Any advise would be great.
Hi Patti,
Thank you so much for your kind words regarding my mother. I love your website and will be linking it to all my promotions in hope to educate more people and in turn find a cure. I am so sorry for the loss of your daughter. We must continue to fight for them.
Blessings,
Melissa
nice website
Hello Danielle,
Yes, there have been a very few cases of ibc presenting with a lump with pus, however, ibc so rarely shows a lump, but the discharge does cause some concern. Also remember that ibc has not been shown to have a hereditary link. There have been so few family members being diagnosed with ibc that it is less likely. That being said this disease is different in each instance. Any changes in a breast should be investigated and with your mother’s history I would not wait another minute. Inform your doctor that you would like ibc to be ruled out and ruled out immediately. We all want you to be able to have the peace of mind that what you are experiencing is not ibc, but something common and treatable. Please don’t let them tell you to “wait and see” get your answers now, you deserve that! There are several more benign possiblities for your symptoms which do not mean ibc, but you need to know. Please let us know how you are doing and we will keep you in our thoughts. Please don’t hesitate to write again if you have any other questions.
My mother died in 1998 from IBC (late diagnosis) she was 56. I have a nickel sized lump (more on then in my breast) on the edge of the areola. It appeared suddenly but does appear to have pus- like an infection and other than itchiness- not other signs. I’m 42. Has anyone ever had IBC begin as a lump with pus? I Know is its not common. I have very small breasts so I worry that it could be.
I am a 11 year survivor of IBC, and I highly recommend that your Mother get a second opinion. Find a breast specialist if you have to. Anytime there are changes, such as you have described, it is always better to rule out ibc first. There are several possibilities for those symptoms, but if it is ibc, time is critical. Please let her know that she could request a biopsy or mri of the affected area. Rarely does a second round of antibiotics do the trick. Please know that I am not a doctor and am not diagnosing her, I simply want you both to have the peace of mind that comes from ruling out this deadly disease.
Question about IBC. My mom is 63 year old white female who was dxd with IDC LUOQ in May of 2009. T1cN0M0 (1.7cm, 0/13 nodes). Txd with AC and radiation. Soon after she was dxd with mixed mullerian of uterus, localized. In remission for both. Chemo for breast cancer began in July and ended in September. Early August she noticed a discoloration of her left breast in LLIQ/LLOQ. This has been seen by Med Onc, Rad Onc and radiologists – not alarming to them. She was seen by ARNP for follow-up of RT who put her on antibiotic 2 weeks ago. Still has not resolved, absolutely no change. How should we pursue this? She has return visit ti ARNP tomorrow and she has suggested to put her on another antibiotic or more invasive procedure for dx. Please advise.
Patti,
I am enjoying the new look and functionality of the foundation’s revamped website. Your personal passion for bringing awareness to this little known form of breast cancer has not waivered and I applaud your past accomplishments and look forward to what the future is going to bring for the education of IBC as you, the Inflammatory Breast Cancer Foundation, and IBC advocates across the country make a difference every day in the lives of women that are diagnosed with this aggressive form of breast cancer that even doctors no very little about.
the website looks great. I am looking forward to seeing the education, outreach, public awareness as well as the research piece of this website contribute to the understanding of the signs, symptoms and most effective treatments for IBC.