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.
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Hi Nancy,
I have only one major question. Is your Mom being treated by a doctor who understands IBC? There are many.
She shouldn’t have to be going through this much pain.
Patti
I have so many questions, and don’t know where to begin. I have been with my mother fighting this horrendous disease for a while now. Every photo, or description I see is exactly like my moms disease except for the horrible lesions, and scabs that are all over her chest and back. It is spreading like crazy, I would like to send pictures to some of these doctors to have for reference. I have not seen any later stage pictures that look like what my mom has. My main question is about the fact that my mother did not have both breasts removed initially, and now IBC has taken over her left breast. It is huge, and painful, and pulls and is making her life that much harder to deal with. Has anyone ever removed a breast from someone well into the disease, just for comfort, and quality of life?There is so much more to tell but I have gone on too long.
Hello Sam,
Sorry to meet like this, but thankfully you are living in the right place. MD Anderson in Houston has the first in the world IBC clinic. It’s called the Morgan Welch Inflammatory Breast Cancer clinic and research program.
Here is the link to the clinic:
http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/breast/inflammatory-breast-cancer-clinic/index.html
Yes Sam, you should get IBC ruled out. If you are thinking what is happening is not normal, and you are having pain as you say, ruling out IBC would be the best course.
Let us know how you are doing
Patti
i am asian indian and 45 years old male. I live in Houston, TX and would like to know where to go to get checked for IBC.
Today i was having sharp pain on my right breast area. I had been having some pain on my back/left/and right sides.
I found out that the pain can be related to IBC. I found about this only today.
Around a year and half back, I had swellings in my armpit (first right and then left). My doctor gave me antibiotics. I had also seen red marks around my nipple and swellings. The swelings took some time to disapper but appeared back. I went to another doctor (internist) and he wanted me to take a scan. He wanted to rule out any lymphoma.
I asked him if I could get some blood to test to rule out any other problem and that is what we did. The blood test came out fine. I didnt get a scan.
Now i am worried after this bout of shooting pain around my breast. I dont have any swelling for all this time but occasionally i feel there is something going on around my armpit. I am not fully sure what. I had a physical last december and talke to my family doctor. He checked and said he didnt feel any swolen nodes.
Plesae let me know if I need to check myself with a breast doctor to rule out IBC?
thanks
sam
TO ANSWER THE QUESTION ABOUT REMOVING A PERFECTLY NORMAL BREAST:
The risk of contralateral breast cancer is approximately 1% per year: so what, exactly does that mean? It means that if you take 100 women with cancer in one breast and follow them for, say, 10 years, one woman per year will develop a cancer in the other, normal breast – that is, contralateral breast cancer, and at the end of ten years, ten women will have developed a new contralateral breast cancer. They will not have a greater risk of death as a result of these new tumors when compared to the other 90 women who did not develop a contralateral breast cancer.
The risk of developing contralateral breast cancer is small enough that it seems medically unnecessary to remove a perfectly normal breast – provided that all studies indicate the other breast is, indeed, normal – for a 1 in 100 chance per year that you might develop a new breast cancer, a new cancer that could be very well treated even if it did occur (!) and that poses NO RISK to your survival.
I am not a fan of removing normal breasts. I understand the fear. I understand how many surgeons and other doctors stand at the ready to remove completely normal breasts if the patient’s wish and insurance will pay. But, really, why?
The real risks and statistics ought to allay the understandable fear that a diagnosis of breast cancer (especially, inflammatory breast cancer) imparts. I just don’t see the point of undergoing any further surgery that is unneeded and will not add one day to your life.
You can be sure that others will disagree with me, but not based on the data, based on feelings, the most powerful one being fear. In my opinion, there are better ways to diffuse the energy that fear produces than to unnecessarily remove a perfectly normal breast.
I was diagnosis with IBC in Aug 1011, have just completed chemo. and will be having a mod. rad. mastectomy in 3.5 weeks.. My big decision is do I just do the one breast or will my long term outcome/survival rate be better if I have both breasts removed. I have recieved conflicting info. and need more info. in order to make a decision.
Lindalee, Your dermatologist could take a skin biopsy to Rule out any cancer cells that might be present. Ruling out IBC at it’s earliest stage would be the best thing you could do. You do not have to have all the listed symptoms for IBC to be present.
I pray it is not, but better to rule it out first.
Please stay in touch.
The only thing I have is increased capillaries (dark and red one), very small under both breasts and sides of breasts – no pain, bruising or itching. I am 58 1/2. Does anyone have any idea on what it could be? I had a very bad UTI one month ago, when these symptoms started. My dermatologist tells me there is nothing to be worried about.
Thank you Becky for sharing your Mom’s story. Now that we are in touch, you will have quicker access to so many questions.
My mother(age 79) was diagnosed with IBC about one year ago. What a long journey this has been for her. She had been told to have a mammogram in 6 months as they were watching an area that was initially believed to be caused by a bad bruise to the right breast. The follow-up mammogram looked worse, and she was referred to a breast surgeon. It took a week or so to get an appointment with the surgeon. Unfortunately, my mom had some very clear IBC symptoms that she didn’t tell about until we visited the surgeon. She had the inverted nipple, warm, red breast, and orange peel-like skin. The surgeon set her up for a core needle biopsy for the following week, and we were told on Nov. 10 that it was invasive ductal carcinoma. I had done some reading on breast cancer, including IBC, and I asked the surgeon if it could be IBC. He told us that it was very difficult to conclusively diagnose IBC. Due to the upcoming Thanksgiving holidays, she was not scheduled for a mastectomy until Dec. 16th (over a month after the actual diagnosis). We were in such a state of shock. The surgeon didn’t seem to be in any hurry to do the surgery. Prior to the surgery, we saw a medical oncologist and radiation oncologist. I asked about the benefits of doing chemo first, and the oncologist assured us that it didn’t really matter if we did chemo or surgery first. The radiation oncologist is the only one who even mentioned that there was concern that it might be IBC. Nobody had even mentioned that to us. Of course, after the surgery, I did a lot of research and discovered that the proper treatment protocol for IBC is chemo, then surgery, then radiation. She had a PET scan prior to surgery, which indicated breast cancer. Nothing was said about cancerous lymph nodes at that time. After surgery (a month later), the pathology report indicated that it was indeed stage IIIB IBC. Nine out of sixteen lymph nodes were positive for cancer. My mom had a rough time healing from the surgery. She also has rheumatoid arthritis and is slow to heal. Jan. 10 she began the first of eight rounds of chemo (Cytoxan and Adriamycin, then Taxol). She did suffer a small amount of nausea, extreme fatigue, and she lost all of her hair. Through it all, she was very strong and courageous. We were told to wait a month before beginning 30 radiation treatments. A few days prior to the start of radiation, I noticed that my mom’s speech was slurred. My husband and I were so worried that the cancer had spread to her brain. Instead, an MRI revealed that she had had three strokes. Radiation therapy was postponed for about 6 weeks to allow time for stroke recovery. She had home health care during that time-physical, occupational, and speech therapy. She actually made a remarkable recovery from the strokes. We added two new doctors to the mix-a cardiologist and a neurologist. She was finally allowed to begin radiation, which left her skin irritated and burned, but mom continued to be cheerful. I’m her only child, and luckily she lives ten minutes away from me,so I’m her driver to all of the appointments. What a great relief it was to finish those radiation treatments. A week after treatments ended, she was started on hormone therapy as her IBC is ER+.
Let me just say that I have learned so much from this wonderful site, and I’ve really appreciated reading everyone’s stories. I realize that everyone is different as far as prognosis goes. I sure wish I had done my homework prior to allowing surgery as I would have known to push for chemo first. The oncologist didn’t want to see her back for 6 months after radiation finished, but I pushed for four months instead. Prior to seeing him, my mom will have a chest xray, blood work,and a mammogram. I’m trying to stay strong and positive, but sometimes I’m waiting for the “other shoe to drop.” I’m very concerned as the proper treatment protocol was not followed to begin with, in addition to the fact that my mom’s immune system is weakened due to her RA. We live in Melbourne, Florida, which is relatively small, and we didn’t really have access to an IBC specialist in our area to my knowledge.
Has anyone heard of a person who has RA and IBC? My mom was on methotrexate and humira for her RA for a few years. We’re wondering if either of those drugs may have contributed to the development of IBC. I am so thankful for every day that I’m able to spend with my mom, but IBC hangs like a dark storm cloud over me. I sure wish the best to all of you who are bravely fighting breast cancer, and I pray that one day there will be a cure found for this horrible disease. I would really appreciate hearing opinions regarding my mom’s course of treatment as well as the RA issue. Thanks…Best Wishes, Becky
To all who post here: If you do not get a response within 24 hours, please feel free to call us at 1-866-944-IBCF (1-866-944-4223) and leave a message on the voice mail. Someone will get back with you as soon as possible. Remember that we are all volunteers and real life does interfere at times. However, answering your questions is very important to all of us. That’s why we do what we do.
Nicole,
I hope by now you have had some action taken, or your symptoms have lessened. As always, if you have a breast issue, as you have, you need a breast specialist, not a GP or OBGYN. If you call our toll-free number we can get back to you with someone hopefully close to your physical location.
Please go to our main web and find contact information.
Hope to hear from you soon.
Patti Bradfield
If the antibiotics have not resolved your issue, demanding a biopsy of the area, including the skin, is what should happen next.
Hi Cheryl,
If you go to our links page on our website, you will see Dana Farber in Boston. Dr. Beth Overmoyer is the head of the clinic.
http://www.eraseibc.com/research.html
Just slide down the middle of the page to Dana Farber.
You can also go to our page “About Us” and click on
Dr. Beth Overmoyer MD, FACP
Assistant Professor of Medicine
Breast Oncology
Dana Farber Cancer Institute
Boston, MA
Which will take you directly to the clinic.
Let me know if this was helpful.
Patti Bradfield, President
Can someone recommend an IBC specialist in Massachusetts?
OK…I am tripping out about right now. I will be 49 in a few weeks and I am having symptoms. I had never heard of IBC. Sat. night breast hurt, couldnt cross arms but since still having periods, and it was due Mon., figured just normal. But Sun. afternoon it called my attn. again and I looked. It was swollen, red on the outside and down from there, hot to the touch. I researched and got scared. Monday instisted on seeing someone…anyone in the world of HMO hell and they gave me a PA who promptly gave my antibiotics. (Temperature was normal). I am not scheduled to see Dr (who I have little confidence in) until next Thur. It is now Wed. I pain has subsided (but could be do to period on it’s way out), swelling is still there, color has gone from red, to bruise looking, to lighter bruise looking (at least I hope it is lighter I could be making this up to feel better). Yesterday I called OBGYN office (he was out), left a message and am awaiting a call. Questions: Better to see OBGYN than Primary Care?? How long should I wait until I push for care or should I wait until next Thurs??? If changes occur (for the better) with meds does this mean I am out of trouble? Most would consider me a very tough woman but I must admit this one is fully scaring me and I am not myself. I am pissed that at my age no one had told me about this type of cancer. I have annual check-ups and mamos…
Wendy,
I had twice a day radiation 8 years ago. I would be happy to talk to you more about it. I have a research paper I can send you. Jbobbora@aol.com
please email me.
Wendy,
I am so sorry this reply took so long. There are many schools of thought on once or twice a day radiation, depending on which clinic or physician you see. One size does not fit all in this circumstance. I would like to wish you well in your surgery. From what you have written it sounds like your Oncologist has you on the proper protocol for IBC, which is the biggest hurdle that many women have to deal with. Please let us know how you go, and if there is anything we might help you understand.
Patti Bradfield, President
The Inflammatory Breast Cancer Foundation
I was diagnosed in March of this year with IBC. I have just completed 6 rounds of chemo and will have a mastectomy in mid August. My concern is with my Radiology treatment plan. I am looking for advice as far as treatment once a day vs twice a day radiology fo IBC. Thank you.
Thank you Wendy. She was 37 when she was diagnosed in 2003. Keep up your vigil.
Hi Barb,
First, reconstruction is “usually” not protocol for the first year with IBC. But asking your doctor to ‘consult’ with the specialists at MD Anderson’s IBC Clinic, as to protocol, would be my first option. I don’t have a clinic name for you in CO, but City of Hope in California has seen many IBC cases. If you are on the IBC Support list, ask that question and I am sure you will get an answer.
Pushing for a physician consult with an IBC specialist is not something out of the ordinary. Sometimes though, the patient needs to push for this.
Let us know how you go.
I wrote back in Feb ’11 when I was first diagnosed with IBC after my bilateral mastectomy and recontruction. I have now had 4 treatments dose dense A/C and am on my 4th round of a 12 week weekly regimen of Taxol. I have changed oncologist because I was not confident that my original Dr. had sufficient knowledge of IBC. I believe my new Dr. is better but I still don’t feel a sense that anyone here in the Denver area is up to par on IBC. I certainly don’t want to offend my current Dr., but I would like to know that he has the most current information on IBC. I am on the IBC mailing list and from what I can tell TX seems to be the place to get the best care for IBC, which is just not an option for me. There has to be other Dr.’s that can effectively treat this disease. I would just like to provide my Dr. with a packet or a name/phone number of an expert that he could speak to. I really like Dr. Sedlacek, and he is known for his expertise in Breast cancer research. I don’t know how often IBC is seen in CO-Terry’s Map doesn’t show many, but I am sure there are many that go unreported and undiagnosed. As for me I am schedule for surgery in August to complete the recontruction as well as remove more of the skin where we were unable to get clear margins at the time of the mastectomy. This will be done in a effort to localize the cancer. Is that even possible with IBC? I did have a positive lymph node which they removed along with 7 others. I’m an out of the box IBCer and don’t fit into the normal path of dx, chemo, sx, chemo, rads. So I need my Dr. to have the information he needs to work creatively within the parameters of IBC. I don’t want to my family to read “this didn’t have to happen” after I’m gone.
Patti,
So sorry to hear about your daughter. How old was she?? I guess I don’t understand why this is not put out to the public so woman can protect themselves as well as their loved ones. We were always told to look for lumps!!! I don’t understand why we do not push more preventative healthcare. Again Patti Im very sorry for your loss. I think what you are doing for others is a wonderful thing.
Patti,
Thank-you. Im watching right now. If I see a change in my nipple I will go asap. I dont know what it is but it is making me a little on edge. I learned the hard way once don’t ignore the signals your body throws your way…… I don’t want to get caught with my pants down again. Not fun.
Hi Wendy,
I am truly sorry about your Mom, and do understand your concern. I lost my daughter to IBC.
Anytime there is something that is “not normal”, you should seek out a physician who is familiar (in this case breast problems) with all types of possible breast issues. Because of your family history, anything that you are “concerned” about, you should seek medical advice. Since this site is for IBC, you should first rule out IBC. If a doctor gives you antibiotics, which is usually the case, if after once course of the antibiotic you see no improvement, demand a biopsy.
This could be just a slight rash, it could be a bug bite. But we have a saying at our foundation; When it doubt….Rule it out! Meaning IBC.
Feel free to contact us if you need anything, that’s what we are here for.
Hi my name is Wendy. I have a concern, I have a red/pink round spot on my right breast. My nipple looks fine maybe Im jumping the gun however my mother died of breast cancer when she was 44. The spot looks like it would be a bug bite, however it has been there for about a week now. Today I noticed that my breast feels a little warmer than normal. I don’t know if I should just watch this a while or not…. Just a little concerned.
Shannon,
We don’t have an exact physician in that area but if you go to http://www.ibcsupport.org and join the IBC support group, you will find women from all over the country who might help you.
The support site is not part of our foundation, but is the most active on the internet for IBC issues and active members/patients.
Please feel free to write here again if you need more help. You can also call our toll free number and one of our volunteers can call you for more help.
Thank you for visiting our website and blog.
DO YOU KNOW THE NAMES OF ANY DOCTORS WHO ARE GOOD WITH IBC IN THE ATLANTA AREA? I DISCOVER A HOT RED SPOT ON MY RIGHT BREAST TODAY AND THE NIPPLE IS ALSO SLIGHTY INVERTED. THANK YOU VERY MUCH
Laurie,
I am a 12 1/2 year survivor of ibc, and a member of the board of this foundation. I have done about 12 years of study on this disease since my diagnosis and treatment and I am also alarmed at what you are describing. There are several possible reasons for your symptoms, however, ibc is so fast and so aggressive that it is very very important to rule it out first, then deal with the “infection” or whatever else it may be. If it were me, I would press the doctors to do an mri or biopsy. You hire them, so they do have to follow your wishes, besides, no one knows your body like you do. That “funny” feeling is often the best indicator that something is wrong. I have that feeling, but my doctors knew what it was and I got treatment immediately. I am sure that is the reason that I am still alive. Trust your instincts and insist. And please do keep us posted, you will be in our thoughts until you find out.
Hello All,
I arrived home from a trip from my nephews wedding in Southern California the beginning of this month, with a feeling of malaise and just not myself. I thought I was just tired from my trip. But then I came to realize that my left breast was very painful (shooting and stabbing pains) and enlarged and had a HUGE lump in it and slightly warm. It wasn’t until evening when I was going to shower and I passed a mirror that I noticed my breast was discolored a medium pink. This along with the pain and general not so good feeling alarmed me. This continued for a couple days until I decided I should be seen by my doctor. I was seen within the week. After a standard exam my doctor thought it was an infection and prescribed medication. She also had concerns that it could be IBC and referred me to the breast clinic for a second opinion. I saw that doc and she said it was just an infection, being that my symptoms had improved in the few days I had been taking the antibiotics. I have one day left of a ten day supply of antibiotics, dicloxacillin…. 500mg. I take 4 a day. The color is better, almost gone. The pain is less, the lump is much smaller. I still have weird feelings in that breast that I can’t quite describe. It’s a weird tickle/itchy feeling inside. Having said all this, I’m still concerned because of all the research I’ve done. The symptoms of IBC are so many and can imitate an infection. My doctors have suggested that I go for a mammo, but from everything i’ve read the mammo isn’t going to see it if it’s IBC. I’ve discussed this with my doc’s and they said, well yes that is true, but a mammo may see other cancers. I said, well at this point were not concerned with “other cancers, were concerned with IBC”. I’ve been demanding they give me an MRI and they are fighting me on this. I’ve filed a grievance against both of these doctors because I feel they aren’t putting my best interests first. I am at my whits end and dont know if i’m being overly concerned being that most of the symptoms have improved. Should I press the issue for an MRI, a biopsy or something else?? I just don’t know what to do. I’m usually a pretty tough cookie, but this is just getting the best of me. I’ve also heard that infections are rare in a woman of my age, I’m 53 years old. Thanks for all you do, you are a rich blessing to so many. And of all the research I’ve done these past two weeks, you are the best thing I’ve found! Good luck and heartfelt best wishes to everyone. ~Laurie
Good news for me – my surgeon diagnosis was ‘infection’ and put me on another round of antibiotics, warm soaks, and anti-imflamatory meds. I am supposed to let her know if the redness doesn’t go away, and to repeat the mammo and U/sound in 3 months. But, the odd hypoechioc mass is probably a imflamed node, and is not cancer. I cannot tell you how relieved, but still at this point, still with redness so not completely resolved – and really am not completely convinced. I feel like I am obsessed by the color of my breast. I will continue the meds, and then repeat the tests. Maybe then, I can fully relax.
Thank you for the information, and the support…
I had my mammo (results: unremarkable) and the u/sound showed “hypoechoic ovoid area NOT demonstrated on the mammogram”. Impression was “probably benign (per radiologist). This should not dissuade further evaluation in the presence of a suspicious clinical finding”. SO, I am seeing the breast surgeon tomorrow as the Friday appt was cancelled. I am a bit nervous as the word “hypoechoic” is paired with both benign as well as malignant – so I’m not sure if this really is just mastitis. Being an RN doesn’t help – we think the worse until proven otherwise…What did other people’s u/sound results look like? I need to stop looking at sites, I am making myself nuts!
Hi Toni,
First, before your first appointment, I suggest that you print out information from our website to take with you. If she is unfamiliar with ibc and says for you to “wait and see” then you can insist on seeing a breast specialist. A really good way to find one is to check with the largest hospital in Chicago and ask to speak with the oncology social worker. They know everyone in the area and their expertise. You, and your insurance, pay the doctors, they work for you. NO one knows your body better than you and you deserve to sleep well at night knowing that this deadly disease is not causing your symptoms. Check our website for clinics in your area, if you find a wonderful doc that has IBC experience then you can “trust” the biopsy and treatment. I have survived for 12 and 1/2 years, and I did not go to a “major name” but I did have a doc that knew IBC. I wish you the best and hope you get the answers that you want. Keep in touch.
Hello – I found a sore red spot on the side of one breast late Friday night (hate medical issues on weekends!) and plan to get in to my gyne ASAP. I have no idea whether she is familiar with IBC or will put me off assuming it’s an infection. IF she doesn’t set me up with a breast surgeon and biopsy right away, what is the best way to find the right help quickly? I live in the suburbs of Chicago. Do I just find any local breast surgeon to get the process started, then ask them to work with a specialty clinic later (like MD Anderson?) If I get a biopsy and it is negative, should I “trust” that? If I am diagnosed with IBC, how much difference does it make WHERE I get the treatment? I am 51.
Thanks for any feedback
Deb,
I too hope for mastitis for you! You are a strong woman, I can tell. If it is IBC, there are treatments that work, I am 12 and a half years of surviving and thriving and you can too. We are here for you if you have questions or just want to talk. Best of luck, keep us posted.
I am in the diagnosis stage – put on prophylatic antibiotics today, and mammogram and diagnostic ultrasound first thing in the morning. I also have an appt with a breast surgeon on Friday for a needle biopsy – just to be sure. I am an RN that is supposed to start a new job on Monday! I am scared but now know that I am not alone, I have ‘sisters’ to talk to, and options to explore. I am still praying for Mastitis, but will have faith either way. The video that Matt did, explained and enlightened me – and did not scare the blessed life out of me, as all the sites did. I will not take the ‘death’ sentence laying down!!! if it is IBC… I will have faith now that I have hope…
Hi Nancy,
They did find cancer in the Aux lymph node, removed it and 7 others. It helps to hear that having the sx first may not have been the worst thing to have happened. I do have a 2nd opinion appt scheduled with a team at the Univ of CO that work with IBC, including a radiologist who can look at the original films from when I had whole breast radiation after the lumpectomy from my first trip neg cancer (not ibc related) to see if there is a possibility of spot radiation for the IBC cells that were not taken by surgery. I start chemo this Thursday. I thought chemo was very effective, but after watching some videos on IBC I’m not so confident any more. Thanks for your response Nancy, it has been a busy week. Just had my chemo port put in, had to have an pre chemo echo and had my first fill for my reconstruction. Who knows if the IBC will tolerate the reconstruction, but my Plastic Surgeon said we’ll continue for now.
Hi Barb,
I am a 12 1/2 year survivor of IBC and have studied the disease since the day I was diagnosed, I am also a board member for the foundation. I am so sorry that you had a doc that didn’t even check for IBC before the surgery. If it were me I would get a second opinion from a doctor that is a breast specialist with IBC experience. I personally know a woman who was diagnosed with stage 4 IBC and she had surgery and no chemo, however, she was going to MD Anderson and seeing Dr. Christofanilli, the best IBC doc in the world, so that is a special case. Your surgery should not effect the chemo drugs effectivity at all. They usually do chemo first to make the cancer cells return back to their point of origin so that the surgeon can get clean margins and there is no as much of a possibility of the disease spreading in the lymph system. Did they find any cancer in your lymph nodes, or did they even check them? On our website under “Research and Clinics” you can find the places that we know are IBC specific and if it is at all possible that would be the place to get your second opinion. We would love to keep in touch with you, and please contact us again if you have any further questions.
Greetings,
I just had sx on feb 11, 2011, bilateral mast, & reconstruct after a recurrence of trip neg breast cancer. The post sx pat report showed IBC. My concern is the sx has been done before the chemo, I have not had chemo, but did have full breast rads after the lumpectomy the first time around. Doing research on IBC it seems chemo prior to sx is the norm, has havng sx first reduced the effectiveness of future treatment – ie. chemo. I understand I may not be eligible for more radd.
Hi Deborah,
I wish I could say happy to see you here…but. Thanks for coming and sharing. You are sure in the right State to have IBC. With the first in the world IBC clinic in Houston, there have been great strides in research and treatment. If you want a group that is really active, head on over to .. http://www.ibcsupport.org.
There are hundreds of women that you can share/scream/rant and learn with and from.
One day at a time..just one day at a time.
Patti Bradfield
Greetings, I was diagnosed thursday Jan 13, my birthday.
my life changed forever in the blink of an eye.
I am truly a virgin here, and am just getting on the ride…
I know so little. I have the next week full of scans and tests, at which time I will learn more info and how the docs Plan to treat this IBC.
Any and all newbie info is appreciated. Thank you
Detective Deborah Wichlep
San Antonio police Crime Scene Unit
Hi Wanda,
I am a 12 year survivor of IBC and a board member of this foundation. I had never heard of this disease before I was diagnosed at 48, and since then I have done lots of studies and education on it. I must say that I am concerned for you, with the new symptoms that you have recently, if it were me I would get answers and get them now. So many of what you describe are typical IBC symptoms, now know that there are other things that could also cause them, but those other things are not life threatening, so why not get the bad possibility ruled out. IBC is aggressive and fast, so time is really important. You can print information about IBC off of the website and take it to a breast specialist and ask for a biopsy or MRI, since mammograms and ultrasounds rarely show IBC. Find a doctor that knows about IBC or, even better, one who has treated an IBC patient, and don’t stop until you get a firm answer to what is happening. We would love for you to keep in touch with us, and please write again if you have any more questions.
I AM NEW FOR THIS SITE. I RAN ACROSS IT WHEN READING UP ON IBC. WHY I WAS LOOKING FOR OTHERS WHO HAD OR HAD HAD IBC AND MORE INFORMATION AND ALL THE SIGNS OF IBC. MY LEFT BREAST NIPPLE BECAME INDENT A FEW MONTHS OR SOME BACK AND I HAVE HAD 2 MAMMGRAMS AND UTRASCANS WITH THEM AND THE RESULTS KEEP COMING BACK AS GOOD BUT THEY KEEP TELLING ME TO COME EVERY SIX MONTHS. WELL ITS BEEN ABOUT 2 WEEKS NOW I WOKE ONE MORNING AND NOTICE WHAT LOOKED LIKE BUG BITE MARKS THEN A RASH AND RIDGES ARE NOW COME VISABLE AS WELL AS A ITCH THAT WILL NOT STOP AND PAIN . AND MY LEFT I HAVE NOTICE SEEMS TO BE GOTTEN LARGER. BELIEVE ME WHEN I SAY THIS I HAVE NEVER HEARD OF IBC BEFORE UNTIL I WAS LOOKING FOR WHAT ELSE THAT COULD BE GOING ON WITH MY BREAST. THE 2 DOCTORS THAT I USED DID NOT EVEN SAY ANYTHING OF THIS KIND. SO TO SAY THIS IS A EYE OPENER FOR ME AND TO SAY I AM NOT SCARE WOULD BE LYING. I AM 54 OTHER THAN HIGH PRESSURE AT TIMES THAT AT SO FAR BEEN ALL. WHAT TO DO NOW I DO NOT KNOW, REALLY. THANK YOU !
Has anyone been on FEC (I think it’s also sometimes referred to as CEF.) I had been scheduled for 12 weekly rounds of Taxol but after 10, my onc said I had gotten all the benefits I was likely to get from it and any more Taxol would just give me the side effects with notheing good. I am taking a 3 week “break” and then will start on the CEF (FEC). The literature about it makes it sound like it’s alot more difficult to manage than Taxol. What has been your experience? I am a teacher and was able to keep working – only missed appointment days – with Taxol. I hope that will be the case with the new drugs. Any advice?
Hi Everyone, I just had to share my last oncology appointment with you all. I am a 12 year survivor and still the night before a doctor visit I do not sleep. My onc said that my tumor markers are GREAT and I am still in the NED (no expiration date! LOL) club. She also said that I have graduated and do not need to see her for a whole year. A whole year!! WooHoo!
For those of you that are recently diagnosed just know that there is hope, I am walking proof of it! Happy Holidays to all.
How did you tell your family and friends you had IBC? I had a “Bosom Buddies Party” to kick off the fight of my breast cancer. We decided to do this cancer thing well and with joy. I gathered my best prayer friends together, with my two sisters, and my three daughters and we celebrated being girls. I was not feeling all that well at this time, cancer was going crazy by then, and my brain a little more crazy from info overload, but I had a wonderful time. The best way in the world to start the battle is with a celebration.
Gail, I would not wish to second guess your doctor, but I do have some questions for you to think about. As to the “clean up” chemo, do you have active IBC or are you NED now? Also if you wish to come to MD Anderson in Houston, they will work with your local doctor, but as part of the evaluation, so you might want to set up some preapprovals with your insurance. You can go to the self referral site on MDA or ask your doctor to refer. I live in the Houston area, and was treated at MDA. I saw lots of women who were checked at MDA and treated at home. If I can be of any help to you in Houston, please let me know. Terry Arnold
IBC board member
NED and holding!
I am currently taking radiation for IBC, after radiation my oncologist is suggesting some “clean up” chemo which I agree with, however she’s getting her information for my treatment from another souce. If I go to MD Anderson and be evaluated will they recommend a treatment plan to the Dr here I’m using? I live about 5 hours from Houston and can’t really afford to stay there and be treated.
On Wed November 24, 2010 Terry Arnold, an IBC survivor will be the guest on the Inflammatory Breast Cancer live radio show. I hope that when your are preparing that turkey dinner in celebration of all the blessings we have in our lives you will tune in via the internet and listen. http://www.thruoureyes.org/ibcshow.html The show is at 10 EST. … I really hope that you will listen, learn, or share a story, but mostly do something to educate women about IBC, Inflammatory Breast Cancer.
Terry Arnold
The IBC Project