Understanding the Treatment Protocol for Inflammatory Breast Cancer

If you have recently been diagnosed with Inflammatory Breast Cancer, you may be a bit overwhelmed by the diagnosis and the statistics. Not to worry, understanding what to expect will help you embrace your treatment plan and move forward confidently. Treatment for inflammatory breast cancer is slightly different than for other breast cancers, and for good reason. IBC is a different cancer, it behaves differently, and treating it appropriately and quickly will increase the odds that you will sail through to the other side and emerge a survivor. I am writing this article because I have been where you are. I received prompt, aggressive, appropriate treatment, and nearly five years later I am still NED. For a newbie to Planet Cancer, this means No Evidence of Disease, which is the target for getting on with your life.

The standard treatment for most breast cancers is surgery, chemotherapy, and radiation followed by any appropriate ancillary treatment such as a hormonal therapy (like Tamoxofen) or targeted therapy (such as Herceptin) if appropriate. This is in the case of an advanced or aggressive cancer. An early stage cancer might not include all of these treatments. With inflammatory breast cancer, you will get them all, because IBC is aggressive and advanced by nature. The primary difference is that it is important for IBC patients to get chemotherapy first.

Inflammatory breast cancer presents as a poorly differentiated cancer, and by definition has already invaded the lymph tissues of the breast. For this reason, surgery first is not indicated. In order for the surgery to be effective, the cancerous area must be reduced. I don’t say “tumor,” because inflammatory breast cancer often does not show up as a tumor, it is revealed as nests of cancer in the breast.

Your oncologist will prescribe aggressive chemotherapy first, to shrink the cancer. This change alone in treatment protocol has dramatically improved outcomes for women with IBC. The chemotherapy agents that your doctor chooses will be based on the particular cell type of your cancer. You may also be offered dose-dense chemotherapy, which is chemotherapy administered on a more frequent schedule than is standard for other breast cancers. This is a tough regimen, but a more frequent schedule gives the cancer less opportunity to bounce back and become resistant.

Surgery is second, and inflammatory breast cancer patients are not offered a lumpectomy due to the poorly differentiated nature of this cancer. A Modified Radical Mastectomy is the best choice, to be sure that all the cancer can be removed. A Modified Radical Mastectomy is the term for mastectomy with lymph node dissection, called modified because the pectoralis muscle is left intact. This is progress! I am grateful that after my surgery I am not without muscles that I need to feel strong. Surgery is tough, but chemo is tougher, so the treatments (in my opinion) become less difficult as you go along. One thing I didn’t know to expect was some nerve damage after the surgery. I was numb across my chest, upper back, and the back of my arm to the elbow. The good news is that the nerves recover, and at this time I have full sensation in these areas. It is important to follow your surgeon’s suggestions for getting back your range of motion. It is very possible, but you have to be committed.

After surgery, you will have some time to recover before beginning radiation treatments. Standard treatment for IBC involves aggressive radiation, across a wide field. Most probably you will have six and a half weeks of daily radiation treatments. More recently, some oncologists have experimented will twice daily radiation for fewer days. There will be “boosts” of radiation to the skin, because IBC invades the skin and your doctor will want to maximize the tools to kill all cancer cells that could remain after surgery.

After radiation, you may continue with hormonal or other targeted therapy as indicated. Usually the side effects from this are much more tolerable than the chemotherapy you have already had.

The majority of this treatment marathon will take approximately eight months of your life, and then you have the rest of your life to appreciate. When I went through it I called it “My 2007 Ironwoman Triathlon” and I reminded myself daily that it was a journey that had a beginning, a middle and an end, and that my discomforts were temporary. I had a lot of support to get me through, and having a good support network will get you through it as well. It was also important for me to use whatever tools I knew to use to support my body through the treatments. I took advantage of several complementary therapies to ensure that my treatments were not interrupted by low blood counts or any other complications, “Stay the course” was my mantra, and it worked well for me.

If you are just at the diagnosis stage and your doctor wants to do surgery first, I highly recommend getting a second opinion. M.D. Anderson Hospital in Houston is the first hospital in the United States to specialize in Inflammatory Breast Cancer. The founder of that program, Dr. Massimo Cristofanilli, has since become the Head of Oncology at Fox-Chase Hospital in Philadelphia. Several of my fellow IBC survivors have found it worthwhile to consult with him.

Inflammatory breast cancer is still not on the radar of many oncologists. Fortunately for me, my oncologist knew what to do for me and I got timely, appropriate treatment. I hope this article has shed some light on what you can expect as you face down this disease, and has prepared you to be an informed patient when discussing your treatment with your oncologist.

I hope that having a plan you understand and feel good about will make the journey easier.


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