June 1st, 2011
08:10 AM ET

Are there new treatments for breast cancer?

Every weekday, a CNNHealth expert doctor answers a viewer question. On Wednesdays, it's Dr. Otis Brawley, chief medical officer at the American Cancer Society.

Asked by Jeannie of Parker, Colorado

I have inflammatory breast cancer and I have been through chemo and a double mastectomy. They found active cancer cells so the cancer has spread. The oncologist said she didn't think there was anything more they could do for me. I start radiation soon but she didn't think that that would be very helpful either. Is there anything out there that may help me?

Expert answer

Dear Jeannie,

Inflammatory breast cancer is a very aggressive form of breast cancer. Less than 1% of all breast cancer patients have this type of disease.

The patient with IBC usually presents with reddened and swollen skin over the breast. In IBC, the skin often takes on the appearance of the skin of an orange, which is called "peau d'orange." The nipple can be flattened or blistered.

Early on, it can be confused with a benign infection of the breast called mastitis. Mastitis is commonly seen in breastfeeding women and unlike IBC often presents with fever and blood studies that indicate bacterial infection.

The diagnosis is usually made by a biopsy of the involved skin over the breast. At diagnosis, the lymph nodes of the armpit are usually involved and one-third of women have disease that has spread to distant sites beyond the breast.

There are no known risk factors for IBC. In North America, it does tend to be of higher incidence in African-Americans versus white Americans but is seen in women of all races and ethnicities. We have little information about it in Africa and Asia. Women with IBC tend to be younger than women with other forms of breast cancer. Inflammatory breast cancer is also a more common form of breast cancer in men.

Therapy of IBC confined to the breast and armpit is usually chemotherapy followed by surgery to remove the breast (a mastectomy) and lymph nodes of the armpit, then radiation to the chest wall and armpit.

Breast conserving therapy is rarely possible. After treatment that leads to disappearance of disease, the patient should undergo good surveillance to detect recurrence early. Standard treatment for those who relapse is chemotherapy and radiation.

Unfortunately, this is a disease in which our therapies are far from adequate. Studies of patients treated as above have five-year disease-free survival rates of 20% to 45% and overall five-year survival of 30% to 70%.

A patient at any point in treatment for this disease might reasonably consider a clinical trial testing a new therapy that might be better than the standard treatments.

I always encourage cancer patients to consider going into clinical studies, but it is important that patients enter well-designed, well-supervised clinical trials. One can find out what trials are available by calling the American Cancer Society Clinical Trials Matching Service at 1-800-303-5691 or visiting the ACS website. Note that I work for the American Cancer Society.

The matching service is free and is a partnership with the Coalition of Clinical Cooperative Groups. The Clinical Cooperative Groups are doctors and nurses at university hospitals and other clinical practices across the United States and Canada. They are sponsored by and work with the U.S. National Cancer Institute, which is a federal agency that oversees much of the cancer research in the United States.

The service can help you find research studies that are testing new drugs or methods to treat any cancer. Similar services are available within the European Union.

You may also find additional information from the Inflammatory Breast Cancer Research Foundation.

I wish you the best as you try to find a treatment useful to you.

Follow Dr. Brawley on Twitter

soundoff (23 Responses)
  1. Tasha

    Please, is there a doctor there willing to do a clinical study in my neighborhood? We are about to be subject to extreme light pollution, which the NIH has linked to breast cancer. 500 full moon equivalent from 6am-11pm. I would like to see come good come out of this mess. The light pollution is going to destroy our conservation park. I worry about my and my family's health. At least, if someone whould use us for a study, some knowledge may be gained. We are unwilling guinea pigs in an unethical experiment. The light pollution will be legal, and the perpetrators don't care that it's immoral.

    June 1, 2011 at 11:05 | Report abuse | Reply
  2. sardukar

    Dear Jeannie of Parker, Colorado discuss with your doctor Genomic Health Oncotype Dx breast cancer assay..as well as Carris Target Now molecular profiling.
    That is how you answer a question without reciting popular WebMD articles, and I don't event have a twitter account.

    June 1, 2011 at 12:24 | Report abuse | Reply
    • D

      It looks like the Oncotype Dx test is for patients with early stage cancers.

      June 1, 2011 at 14:15 | Report abuse |
  3. Thurston Murray

    Dear Friends, I came down with Male Breast Cancer 28 years ago. I had all kind of wild treatments options offered to me to include removal of my testicals to reduce the Estrigen in my system. I refused that deal, as my wife and I were wanting to start a family. I selected a Radical Masc, and 23 high powered Radiation Treatment. It was a stage 11 and Grade 3 infiltrating adnocarcinoma. My daughter is in Medical School studying to be a physician, and was born two years after my treatment. Always get a second opion about treatment and even a third would be great. Sincerely, Thurston

    June 1, 2011 at 13:56 | Report abuse | Reply
  4. Patti Bradfield

    What this article is missing is the various IBC specific clinics around the United States. A second opinion after an oncologist says "there is nothing more 'I or we" can do for you, is not acceptable with Inflammatory Breast Cancer.

    June 1, 2011 at 14:28 | Report abuse | Reply
  5. Loretta Blickenstaff

    Dear Jeannie,

    Please get a second opinion. Contact MD Anderson in Houston who has done a lot of research on inflammatory breast cancer or my mom's oncologist in Hutchinson, Kansas....Dr. Fesen. He saved her life! She was diagnosed with this type of cancer at age 72 and she is now 81. Dr Fesen has a great book out on surviving cancer that is on Amazon.com. I wish you the best and know this type of cancer can be beat. There is also a support group http://www.ibcsupport.org

    June 1, 2011 at 14:29 | Report abuse | Reply
  6. Anne

    There is nothing I can do for you is not an option. Act now, get another oppinion. Try http://www.ibcsupport.org for support or Dr. Christofenili (spelling) at Fox Chase. He specializes in IBC.

    June 1, 2011 at 15:12 | Report abuse | Reply
    • Muzakar

      Welcome Karuna! Wonderful to hear your passion for coniinutng the important work of Breast Cancer Action. As a 6 year Board Member of Breast Cancer Connections in Palo Alto, bcconnections.org,I am pleased to say that we also have a new fabulous, passionate Executive Director to lead us forward, empowering women to take control of their breast cancer through information and support. I hope you and our ED, Dana Kaye, can connect soon.

      September 13, 2012 at 23:03 | Report abuse |
  7. Virginia R Hetrick

    The proper spelling of the doctor's name at Fox Chase Cancer Center is Dr. Maximo Cristofanelli. He has a huge background in treating IBC innovatively.

    Also, please note the changes in treatment as a result of clinical trials. When I was first diagnosed 20 years, 2 months, and 18 days ago, the very best statistics were that 50 percent of patients died within 14 months of treatment and only 20 percent of all patients survived for at least five years. A number of us have now survived a lot longer than ten years and some of these folks (men and women) are participants in the IBC Support list (http://www.ibcsupport.org). Nearly all of us who are longer term survivors are not physicians of any kind, but some of us have support from oncologists to help educate current patients in the terminology and treatment of IBC, making clear that we are giving education only and NOT suggesting a particular course of treatment.

    Dr. Brawley's comments about participating in clinical trials are right on! Participation in such a trial for a medical condition which is not well-understood is huge, both for us and for future patients. The more we learn about what drives the little suckers (tumor cells), the sooner the researchers are going to find ways to treat IBC and other cancers more aggressively so that the dream of stalling tumor growth or finding a cure will be not such a crazy dream.

    Good luck to you, Jeannie, while we're all waiting for the dream to be answered.


    June 1, 2011 at 15:45 | Report abuse | Reply
  8. Cathy

    get a second opinion! I went to MD Anderson for a second opinion on my much simpler breast cancer diagnosis nearly 7 years ago and the experience was phenomenal. I know through another friend that they (MD Anderson) have a specific clinic for IBC – I'd go there; they are looking for IBC patients as they want as much data to compile as they can get; working to increase the odds on this one too. Can't hurt to at least call.

    June 1, 2011 at 16:31 | Report abuse | Reply
  9. Angie

    Just seconding Fox Chase and Dr. C – he is THE guy to go to for IBC.

    June 1, 2011 at 18:28 | Report abuse | Reply
    • Asep

      Welcome and thank you for taking on this task! I write a blog about liivng green on Cape Cod where the utility company intends to spray up to 5 herbicides under the power lines. Traces will end up in our sole-source aquifer and drinking water. I educated myself over the past two years and became an activist. Estrogen-mimics need to become a term everyone understands. Cape Cod has one of the highest rates of breast cancer in the nation, along with Marin County. Please work to bring the President's Cancer Report and the fact that it is being ignored to the media's attention. Have you seen the short video created by Dr. Theo Colborn two months ago about endocrine distruption? We are climbing a mountain here, but it is good to have company. This is so very important. Do you intend to have a blog on the Breast Cancer Web site?

      September 11, 2012 at 02:58 | Report abuse |
  10. Barb

    Jeannie, I live next to you in Elizabeth, CO and have IBC sounds like we are at about the same stage in the disease. I'd love to chat – Perhaps we could go see Dr. Cristofenelli together? I had to change Dr's due to lack of knowledge of IBC. I think the girls from the IBC support group that have responded here are correct, you need a second opinion. Please email me at barbstc@gmail.com.

    June 1, 2011 at 22:03 | Report abuse | Reply
  11. Lesley

    I'm in Australia and I too have IBC – I'm not Robinson Crusoe over here either. People from Australia, New Zealand, England and Europe are members of http://www.ibcsupport.org.
    This is a wonderful support group, where there is much information, encouragement and an ear to listen should you simply wish to vent. These are people who are living with IBC, the operative word there is LIVING.
    These days, I feel there is a much more optimistic outlook on this nasty disease. Even those women who have progressed to Stage IV (metastases ) are doing better now, than ever before with the help of new treatments and a better understanding of IBC.
    Each day, Science is working towards new, improved methods of treatment. We understand, and are learning more about this form of cancer now. Statistics are changing, even since what has been quoted here. Herceptin has improved the statistics for those with HER2 strain. I encourage you to be brave and have hope and faith.
    Faith goes up the stairs that love has built and looks out the window which hope has opened.–Charles Spurgeon
    Yours in Sisterhood – Lesley

    June 3, 2011 at 06:19 | Report abuse | Reply
  12. Sandra Wade

    I am a 9 years and 8th month 4th stage metastatic IBC survivor. Diagnosed in April 2002 with 4th stage IBC and IDC stage 2 with 4 cm tumor. Prognosis was grave and aggressive treatments were brutal. I'm still alive, but as my oncologist once told me, "We almost had to kill you to save you." Almost 10 years later, I still have 4th stage IBC with an addition of 6 major life-threatening diseases and conditions because of the "collateral" damage of treatments; heart disease, chronic congestive heart failure, enlarged heart and damaged left ventricle; pulmonary radiation pneumonitsis, now secondary lung cancer; peripheral neuropathy; polyps in my throat, stomach and intestines, GERD , Acid Reflux; thyroid damage = hypothyroidism; difficulty swallowing, radiation arthritis, sever arthritis of the spine; chronic pain; chronic fatigue, sleep apenia; total bone and muscle pain; now diabetes2 are the major things I have learned to "live" with.

    Now with that being said, I am glad I am alive so I can fight like hell for cancer patients to receive the needed and deserved rehabilitation treatments to lessen the suffering and improve the quality of life for the cancer patient that is being bombarded relentlessly over and over, not just for a few weeks, or months but for year after after. Then when the good doctor has to stop treatment because it has done extensive damage to heart et al, the patient is sent home with no more than. "i'll see you in a month to check you blood." Six months after my last treatment, I was feeling a little stronger and the fog was lifting but I suffered a huge depression and I didn't know what was going on with me. My doctor was useless in getting me any help with all I was dealing with. If it didn't involve chemo it seems as if you are on your own. Well I did just that. I've learned a lot on how to help yourself, where to go and what to do to improve your quality of life. I've done it for myself, you can too.

    If anyone out there is interested in contacting me I'd be more than willing to share and work with you for free. This is just my way of being able to give back some dignity and integrity to cancer patients undergoing horrific treatments without the needed and deserving support that one needs. Don't be a victim of advanced medical technology that has left the human being behind. You can have the best of technology and the best of palliative care to improve your quality of life. Demand it or you will never get it. I started using every once of energy and every waking moment to search and find the help I needed. Now I have more than i will ever use. Please don't suffer the medical treatment without the healing treatment you need. There is help out there for the asking. Feel free to contact me and I'll share what I've learned for myself. Also if someone out there knows something I wish you would share it with me. Sandra swade143@gmail.com

    December 4, 2011 at 16:46 | Report abuse | Reply
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    May 11, 2012 at 22:35 | Report abuse | Reply
  14. Bhavani

    Welcome Karuna. On behalf of Breast Cancer Action Montreal, I look frwoard to our continued collaborations to make the systemic changes necessary to end this epidemic. I agree, things are not right and like you, I also find it impossible not to step frwoard for change! Together, our organizations and networks, will make a difference that will end this epidemic!

    September 14, 2012 at 01:13 | Report abuse | Reply
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