What forms of communication do oncologists use to spread the word about inflammatory breast cancer? Publications, and presentations at national and regional meetings.
Is there a database of oncologists and surgeons that specialize in IBC? I don't believe there is. Major cancer centers with strong inter-disciplinary teams would have the necessary expertise, but there is no list that I am aware of.
IBC diagnosed 2 days ago. Trying to decide if it's better to travel 2 hours alone to a major cancer center or stay with my support and go to a local cancer center in our area. How important is the psychological support versus a cutting-edge hospital? For high-risk and aggressive breast cancers, including inflammatory breast cancer, one usually has a single opportunity for cure. It is critical to find a well-trained and highly interactive team of breast cancer specialists in order to succeed. So especially for inflammatory breast cancer, it would be important to make the extra effort to find such a team. If such a team exists in your local community, then great. If it does not, the 2-hour trip is more than worth it.
What treatment is suggested for ulcerating skin metastases? Radiation tends to be effective at helping ulcerations heal and helps frequently with pain associated with ulceration.Depending on the timing of these ulcerated lesions in the overall treatment history, as well as the number and location of these lesions, one might select different treatments or treatment combinations. In the presence of a single or limited number of closely clustered ulcerated lesions, radiation might be an excellent choice. If there are multiple, especially widely spread lesions, then systemic therapy alone or in combination with selected local treatments might be a good choice too. Systemic treatments might be chemotherapy or hormonal therapy or something like Herceptin, depending on the type of tumor.
Are you aware of the Inflammatory Breast Cancer Research Foundation's BioBank and do you feel this will be beneficial in the research we need? For further understanding of the biology of inflammatory breast cancer, it is critical to develop collections of tumors and a well-annotated description of the patients and the treatment used for the treatment of that tumor. The more these selections of well-annotated tumors can be developed, the more rapidly we will learn how to best treat, monitor, and prevent these tumors.
Could you advise whether M.D. Anderson would give second opinions via telephone/email for overseas patients with their new IBC clinic? The management of M.D. Anderson is very complex and dependent on a closely coordinated team effort. The diagnosis and work-up and treatment decisions also depend on the ability to take a careful history and examine the patient. For these reasons, telephone and email consultations have the risk of providing individual patients less than optimal information. Accordingly, it is not M.D. Anderson's policy to offer such second opinions via email.
Can you comment on the use of Taxol vs. Abraxane in the treatment of recurrence in IBC, especially for the triple-negative cases? Abraxane (chemical name: albumin-bound paclitaxel) is a new formulation of paclitaxel, which is the active component of Taxol. There is a single head-to-head comparison of Abraxane and Taxol which suggests that we can give higher doses of Abraxane and that Abraxane is slightly more effective at those higher doses than a standard dose of Taxol. Whether this applies to inflammatory breast cancer or not is unknown. But clearly Abraxane is an effective drug, although whether the cost differential is justified in the case of an individual patient should be discussed with the treating oncologist.
What is the normal testing post-treatment to check for recurrence? For most breast cancers, the follow-up is based on history and physical examination about ever 4-5 months after diagnosis, then every 3-6 months for the next 3 years or so, and yearly thereafter. In addition, one should do a mammogram of the remaining breast tissue once a year. For inflammatory breast cancer, probably the only consideration is that recurrences tend to happen early, within the first 2 years or so, and because it is a more aggressive disease, one might want to consider more frequent visits for examinations. But there is no need for imaging of the brain, liver, or lungs at this point.
What's your opinion on high-dose chemotherapy for use with IBC? High dose-chemotherapy remains a treatment under investigation for any and all types of breast cancer. It is not part of standard treatment. Whether it will have or whether it would have had effects in patients with inflammatory breast cancer remains to be determined, and unfortunately because there is such a small number of inflammatory breast cancers, there will never be a definitive trial of that question.
Can chemotherapy for IBC be repeated when there is evidence of recurrence after one year? The first round of chemo was well tolerated, surgery and radiation also performed? In general terms, when recurrence is detected within about 6 months or less from the last dose of a specific type of chemotherapy, then that same chemotherapy would not be the first choice for treating the recurrence because the time is so short that one would assume the tumor was resistant to that type of chemotherapy and one would select a chemotherapy drug that was not included in that first treatment. Fortunately for the breast cancer patients, there are multiple types of chemotherapy that are effective in managing breast cancer, including recurrent inflammatory breast cancer. Lapatinib, or Tykerb, was recently tested in a clinical trial specifically in patients with recurrent inflammatory breast cancer, and Tykerb was shown to have anti-tumor effects in about 1 in 3 patients if they had the HER2 abnormality.
You didn't answer Kat's question re: does the IBC behave the same way in other parts of the body as it did in the primary site? We are not asking about likelihood of recurrence as much as what happens [and] how quickly in a secondary site? First of all, I think we need to dispel the idea that inflammatory breast cancer looks like inflammation under the microscope. It does not. In terms of the question specifically, once inflammatory breast cancer spreads to other organs, it tends to behave much like other rapidly growing or aggressive breast cancer. Now because it is an aggressive form of breast cancer, it has a pattern of spread that is somewhat different from other forms of breast cancer. It tends to spread more often to the lungs, the brain, and the liver although certainly not exclusively so. Once it spreads, it is an aggressive tumor and tends to grow more rapidly and spread more rapidly than other forms of breast cancer like the hormone dependent non-inflammatory breast cancer.
Have there been studies that show that twice-a-day radiation is more effective with IBC? Should it be standard protocol for IBC? At M.D. Anderson, for many years we've been investigating whether giving radiation twice a day instead of once a day leads to an improved outcome. The information we have from our own institutional experience leads us to be optimistic about this approach. The theory behind giving twice-a-day radiation is that you can complete the treatment in a shorter period of time and therefore have less of a chance of the IBC tumor cells growing during the course of treatment. The treatments, however, have some side effects and risks that also need to be considered. In addition, this approach hasn't been thoroughly studied in a big head-to-head comparative trial, in part because IBC is a rare disease. I would hate to say that giving once-a-day radiation is wrong. It remains the most common radiation delivery schedule given in the United States. I do think it is reasonable to consider twice-a-day radiation, given the good results that have been reported by investigators at M.D. Anderson.
Is the presence of IBC in one breast enough justification for the doctor to remove the other breast? Removal of the other breast does not in any way improve the cure rate for patients with inflammatory breast cancer. Therefore it's not a standard part of treatment.
Since IBC is an aggressive form of breast cancer, if it should spread to other areas of the body, does it act the same way there—for example, fast growing? I was diagnosed with it December 2003, completed treatment August 2004 and have had no evidence of disease since? Kat, I'm happy to hear you're doing well after completion of your treatment. It is true that if IBC were to recur, it tends to reoccur earlier compared to non-IBC breast cancer. For example, non-IBC breast cancer can even recur a decade after treatment. This would be very, very unusual for patients with IBC. I hope yours will never recur.
What kinds of gene therapy are being looked at for IBC ? I'm not aware of a gene therapy trial for inflammatory breast cancer. There are ongoing trials for breast cancer in general, but all of them are in the very early stages of development, mostly Phase 1 trial. But nothing specifically for inflammatory breast cancer. When new drugs are developed, the very first step is to establish what is the best way to give the drug, how much should be given, how frequently, and how well patients tolerate that way of administering the drug. The same is true for gene therapy, for gene therapy is, in a way, a drug. So at this stage in the gene therapy trial, they are trying to determine the best way to administer the gene therapy, how frequently, and how much needs to be administered to get the predicted effect. Only later in the second stage do those clinical trials get to be reliable enough so that one knows that the drug or gene therapy is given the best way so one can expect the best possible results. At this point, gene therapy is not considered part of standard treatment of inflammatory breast cancer.
Are there any clinical trials available at M.D. Anderson Cancer Center that would benefit an IBC patient who has received treatment as you've outlined yet now has evidence of recurrence in the chest and brain metastases? Now evidently a stage IV patient? In general terms, most clinical trials unfortunately do not include patients with brain metastases, mostly because of safety concerns. So at this point, and without looking at my priority list, I can't think of a specific clinical trial for patients with inflammatory breast cancer and brain metastases. We might have a clinical trial of new drugs for patients with metastatic brain cancer and brain metastases, and whether a particular patient could be a candidate would require a more in-depth assessment for all the relevant information. The right person to call for this would be Dr. Stacy Moulder at 713-792-2817, or Dr. Massimo Cristofanilli at the same number.
I am the minority with IBC that was also HER2, ER and PR positive. I have completed combination chemo, mastectomy, radiation, Herceptin and am now on Femara. Do you think Femara treatment will be extended beyond the 5-year plan?
That's a crystal ball question. I think we could say that there are ongoing clinical trials to determine whether prolonging the duration of Femara or similar drugs beyond 5 years is useful and well tolerated. The results of those trials will become available probably in the next 3-5 years.
What's the most current thinking on treating triple-negative IBC? Also, early trial results on Tykerb indicate positive results for IBCers. How does that translate to triple-negative IBCers? Probably about 40% of inflammatory breast cancers are likely to be triple negative. Those tumors that are triple negative are today treated with a combination of chemotherapy, surgery, and radiation. We have no evidence that any additional treatment is useful. Lapatinib, or Tykerb, is a drug that was developed specifically for tumors that have excess amounts of two specific proteins: HER1 and HER2. It does have anti-tumor activity, and its activity appears especially prominent in those patients that have HER2 abnormalities. In that sense, it is similar to Herceptin in its spectrum of activity. The initial trials with Tykerb that included just a small number of patients with inflammatory breast cancer suggest that Tykerb in the HER2 positive inflammatory breast cancer group was active in 1 in 3 patients. To the best of my knowledge, Tykerb has not been tested in the triple-negative group, nor is there a reason to do so at this time. Until Tykerb becomes commercially available, the treatment of choice for patients with inflammatory breast cancer that have HER2 abnormality would be Herceptin, or trastuzumab, in combination with chemotherapy as well as surgery and radiation therapy.
Is there any way that DCIS or invasive ductal carcinoma could "turn" into IBC? I was diagnosed with DCIS in 2004, then IDC earlier this year. I'm currently in chemo to be followed by radiation. I have noticed a pink area adjacent to my original mastectomy scar and a hard spot underneath it. Ultrasound and mammogram were clear, but I'm still uneasy about it due to my history? We don't know whether there is a natural sequence from one type of cancer or precancerous lesions to inflammatory breast cancer. We do know that after breast conserving surgery, there can be redness of the skin and skin edema (swelling) as a result of both the surgical operation and possibly radiation. Sometimes it is difficult to tell whether those changes represent a recurrence of the disease in the form of inflammatory breast cancer or simply post-surgical or post-treatment changes. Depending on the degree of suspicion of whether it is a recurrence or not, and depending on what imaging like ultrasound and mammography show, one might or might not want to do a biopsy to evaluate those changes. This is really a situation where being assessed by someone whose expertise within breast cancer management is really important. It's important to emphasize that after surgery, especially a lymph dissection, there may often be swelling and redness of the skin. We frequently see it, and it usually gets better with time. If it continues to deteriorate or it gets worse, that's when we'd consider doing a biopsy.
My axillary lymph nodes were removed 11 years ago from first go-around with cancer. I was subsequently diagnosed with IBC in the same breast. There were no lymph nodes to take this time. How do I know for sure that the cancer did not spread? When inflammatory breast cancer develops in a breast that has already been treated for breast cancer, the first step would be to perform a series of staging tests to assure that the cancer has not spread. It is correct that once the axillary lymph nodes have been removed, there may not be more removed at the time of surgery. But otherwise, the treatments would be the same with initially finding the extent of the disease, beginning with chemotherapy, subsequently performing a mastectomy, and then considering radiation. Some of the chemotherapy and radiation decisions may also depend on the previous breast cancer treatment.