IBC Info

Myths vs Facts

Myth: If I don’t have a lump, I don’t have breast cancer.

Fact: Rarely is a lump evident with IBC. IBC grows in the lymphactic vessels of the skin and is usually diagnosed only after it has invaded the breast and possibly other organs.

Myth: My breast(s) is looking like the skin of an orange. I just had a mammogram and there was no evidence of a problem. It can’t be anything important.

Fact: Mammograms, ultrasound, and even biopsies don’t always find IBC until it has already invaded tissue and organs. If there is a change in your breast(s) appearance or texture, if it is hot, or if your nipple(s) has changed, an immediate appointment with your healthcare provider could be life saving.

Myth: My breast(s) has become swollen and hot. My Doctor says it’s only an infection and we should try different antibiotics.
Facts: Precious time will be wasted while you are trying different antibiotics. Insist on a mammogram, ultrasound, and/or biopsy. The first round of tests may discover nothing. However, if the antibiotics still aren’t working after the second week, insist on repeating the tests.

Myth: I am a man, and breast cancer is not a concern for me.

Fact: Men and women are breast cancer candidates. Men as well as women need to be aware of their breasts and seek medical advice when a change appears.

Myth: I am pregnant and my breast(s) has become swollen and hot within
the last few days. Before that, it was very itchy for weeks. It’s probably just because I’m pregnant.

Fact: Breast cancer can strike at any time. IBC strikes fast and hard. Any change in your breast(s) at any time should be investigated promptly. Waiting until after a pregnancy could mean the difference in controlling the cancer and losing the battle before you’ve begun to fight.

Facts above are taken from http://www.y-me.org. Awesome site and awesome magazine free of charge.


 

Studies

Images from http://www.breastcare.com

 

There are limited case studies available on IBC. There are two very worthwhile IBC Registry Programs – one is associated with the George Washington University Medical Center and the other is associated with the Tufts/New England Medical Center.

The complete information with study links is at http://www.ibchelp.org.Click here to go directly to that page.


Symptoms of Inflammatory Breast Cancer, IBC


One or more of the following are Typical Symptoms of IBC.

YOU DON’T HAVE TO HAVE A LUMP TO HAVE BREAST CANCER*
• Rapid, unusual increase in breast size
• Redness, rash, blotchiness on breast
• Persistent itching of breast or nipple
• Lump or thickening of breast tissue
• Stabbing pain and/or soreness of breast
• Feverish breast
• Swelling of lymph nodes under the arm or above the collarbone
• Dimpling or ridging of the breast
• Flattening or retracting of nipple

* If you suddenly develop a lump or mass, have it checked immediately. We have one reported case where a 9x8x5cm lump developed in only three weeks.

Use caution when relying on the interpretations and reports of the mammogram or ultrasound! Inflammatory breast cancer usually grows in nests or sheets, rather than as a confined solid tumor.

IBC may not be detected using either mammography or ultrasonography. Increased breast density compared to prior mammograms should be considered suspicious. Remember: You don’t have to have a lump to have breast cancer.

The National Cancer Institute, NCI, describes the symptoms of IBC as:

• A lump or thickening in or near the breast or in the underarm area

• A change in the size or shape of the breast

• Nipple discharge or tenderness, or the nipple pulled back (inversion) into the breast

• Ridges or pitting of the breast (the skin looks like the skin of an orange)

• A change in the way the skin of the breast, areola, or nipple looks or feels (for example, warm, swollen, red, or scaly)


 

After The Diagnosis

I would suggest that after you are diagnosed you get a second opinion. Although you might trust your doctors and your facility, this is a rare disease. Getting a second opinion will leave your mind free of doubt about your diagnosis and about your treatment.

Your doctor could probably help you arrange your appointments to get you an appointment as quickly as possible. If not, I am sure that when you call and cancer center and explain your diagnosis they will get you in.

Most insurance companies allow for second opinions. Even though getting this second opinion may delay treatment by a week I think it is worth it for the piece of mind you will get both now and in the future.

Once you have gotten past your decision to obtain a 2nd opinion or maybe even while you are waiting for your appointment you will be introduced into the mysterious world of medicine.

You will probably have X-RAYS, M.R.I., C.A.T scans, and P.E.T scans. It all seems overwhelming. Just the schedule alone is overwhelming let alone the unfamiliarity with the facility and most of the machines.

I hope you have the same experience I did though. Most of the people who helped me through this process were wonderfully compassionate and patient. My experience is that if they aren’t — you don’t have to just tolerate it. There are plenty of wonderful people to step into help you. You have to remember that you are the consumer, the customer so to speak.

So if you are not getting questions answered or being treated right, either speak up or move on.

While your tests are being analyzed you will be putting together your team of doctors who will be suggested by the dr. that diagnosed you. These doctors, especially you oncologist will become a huge part of your life. so even though they highly recommended , if you don’t feel right for you, move on. It isn’t the end of the world for them. They will get over it.

You will also meet a social worker. This member of your team will be as helpful as you need them to be. They will probably introduce you to the oncology nurses. They will invite you to a support group if it fits for you. There is as much or as little support out there as you want to take advantage of. In the resources section of this site will be a list of programs and groups for you to take advantage of.


News & Publications

Tykerb® Effective in Recurrent Inflammatory Breast Cancer, Link, 6/6/2008

MD Anderson Opens World’s First IBC Clinic PDF, Fall 2007

New Cancer Study Looking For Participants PDF

Pink Link October Featured Member, October 14, 2007, by Priscilla DiBlasi :Printable Version:

Lifeline (the Y-Me newsletter), Fall 2007 PDF • (My artwork is on page 12!)

Mt Auburn Hospitals Newsletter, Back To Normal Life PDF (I’m on the cover!)

Behind the scenes of my interview with Channel 5

Channel 5 News, Boston MA, Inflammatory Breast Cancer Is Rare: Warning Signs Different From Traditional Cancer

-Link to page and video entry-

POSTED ONLINE: 11:22 am EDT October 8, 2007
UPDATED: 12:50 pm EDT October 9, 2007

Transcript:

BOSTON — Inflammatory breast cancer is a rare, but deadly disease. Doctors say it is often difficult to diagnose because the symptoms are quite different from typical breast cancer.

Incidents of IBC rose 25 percent in the last decade, and Priscilla DiBlasi, of Everett, is among the 1 percent of women who get this disease.

“This little thing here says ‘survivor’ and it’s a pendant that I, that I wear,” said DiBlasi, whose artwork provides an escape from the loneliness of surviving a cancer most people know little about.

“We went out on the deck and had a glass of wine,” she told News Center 5’s Kelley Tuthill.

That’s when DiBlasi’s breast started hurting. “I went in after that, got ready for bed, my breast was red, hot, swollen. It was immediate. I went to the emergency room. They thought it was an infection, maybe lyme disease, poison ivy.”

One month later, DiBlasi discovered a lump, a more typical sign that a woman has breast cancer. At that point, further tests were ordered, and the doctor confirmed that Priscilla had inflammatory breast cancer.

The doctor “gave me a book on breast cancer, like a 300-page breast cancer book, and I looked through it and there were three lines on inflammatory breast cancer in this entire book.” DiBlasi said, “I thought I was going to die; there’s nothing they can do.”

Breast surgeon Sue Troyan, who works at Boston’s Beth Israel Deaconess Medical Center, said that historically, the outlook for women diagnosed with IBC was dismal. “But what we have learned,” Troyan said, “is that if you use of combination of chemotherapy and radiation therapy and surgery, we get much better results. Now many of us have 20-year, even 30-year survivors in our practices.”

Troyan said inflammatory breast cancer is aggressive, but rare. Warning signs include redness, warmth and swelling, as well as breast skin that appears discolored or dimpled. Heaviness or pain in the breast can also be symptoms.

It’s named after the appearance of the breast in women who develop this disease. Troyan said, “These cancer cells are incredibly good at getting into the lymphatic vessels. Those are the vessels that drain the fluid from the breast, and they will get in and plug up the lymphatic vessels that are draining the breast and in doing so, fluid backs up, and as the fluid backs up into the skin and the breast tissue it becomes swollen skin.”

On average, only 25 to 50 percent of women with IBC will survive at least five years. But those numbers are improving with more aggressive treatment and more awareness. Priscilla has been living with this disease for two years and she has every intention of surviving.

“It’s not a death sentence,” DiBlasi said. “Every single day there are new things coming online. The whole thing is finding it early, getting in there. And even if you don’t, there’s still hope. I’m feeling great and ready to move on. I think there’s absolutely hope and it’s not a death sentence. It absolutely is not a death sentence. It’s a sentence to wake up and smell the roses and live today.”

Also rare is men developing breast cancer. Men account for about 1 percent of all breast cancer cases. Signs to look for include abnormal lumps or swelling as well as skin changes.

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