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This can't be happening to me!

It was as if the world had suddenly stopped spinning. I felt lightheaded, disoriented, numb, cold. I'd known something was wrong when I saw the faces of the doctor and nurse, but I was the one who had to use the word "cancer" because they insisted on dancing around the issue.

The US National Cancer Institute is recruiting newly-diagnosed IBC patients for a clinical trial - please see the Clinical Trials page for more information.

No two patients and no two experiences of diagnosis are the same. Terror and despair are pretty common reactions, and you're likely feeling both right now. You may feel completely alone, especially if you are single or lack a strong support network. There is support available through local support groups and online. If you want contact with survivors of inflammatory breast cancer, there is an IBC mailing list with about 400 members. Nothing compares to face-to-face support, and we encourage you to contact the local Cancer Society or your hospital for information on support groups in your area.

You are heading into what will be a very difficult period of your life. Some people sail through treatment with relative ease, while others have difficulty functioning at the most basic level until well after finishing treatment. Even if you feel well, your body is taking a beating, and you'll need more rest than normal. Don't push yourself to do more than feels comfortable, and don't be afraid to ask for help. Chances are your family, friends, neighbours and workmates are just waiting for an opportunity but don't know what you need. Things do get better, your hair will come back, and there will come a time when you can sleep through the night again and go a day without thinking about the possibility of dying.

There is no reason to feel guilty that you have cancer or that your cancer was not detected sooner. Your cancer is aggressive and probably appeared very quickly, so even diligent monthly self-examination might have missed it. There are all sorts of factors which contribute to an individual's likelihood of developing cancer, and some women are at high risk for breast cancer, but no-one's risk is 0% or 100%, and about 80% of women diagnosed with breast cancer have no family history of the disease. Try not to have regrets about how you have looked after yourself in the past, and focus on what you can do now to handle the stress of treatment and your life afterward. Similarly, don't blame your doctor too much if you weren't diagnosed right away. Many doctors only see one or two cases of inflammatory breast cancer in their entire career, and a few benign breast disorders have similar symptoms. The average time between appearance of symptoms and diagnosis is over two months with IBC, so unless the delay in your case was much longer than that, your prognosis isn't likely to be affected.

If you want an idea of what to expect in the coming months and years, read the stories of women who are ahead of you on the same journey. Every woman's story is different, but they may give you a sense of possibilities, and of the resilience of the human spirit. There have also been many books written by cancer survivors and specialists which you may find useful.

Most forms of breast cancer grow slowly, so it is safe to spend a few weeks doing research, getting second and third opinions, and making decisions. Unfortunately IBC is aggressive, and unnecessary delays are not a good idea. Having said that, it is important to have an experienced and skilled doctor you trust and who communicates well with you, and if the doctor who is going to treat you does not, it's a good idea to find one who does. You may want to ask your doctor some of the following questions, and get a second opinion if you have any doubts.

  • In what specialties are you board certified?
  • At what hospital do you have admitting privileges?
  • How many patients with IBC do you treat each year?
  • How often will I see you during treatment?
  • If I see other specialists, will you be working as a team?
  • What does my pathology report say, and what does it mean?
  • What are my treatment options, from none to the most aggressive?
  • What course of treatment are you recommending for me?
  • What are the possible side effects, and how can I manage them?
  • How successful has this course of treatment been for other patients?
  • What are my options if the treatment doesn't work?
  • Are there any clinical trials which might offer me promising new treatments?
  • Will you allow me to make decisions about treatment after listening to your advice?
  • How do you feel about faith, visualization and alternative medicine?
  • If I have a mastectomy, can I opt to have breast reconstruction at the time of surgery or at a later date?
  • What sort of follow-up care will I have once I finish treatment?
  • If I choose to end treatment at some point, will you support me?

Because inflammatory breast cancer often spreads quickly, your doctor may recommend tests to see whether your cancer has spread beyond the area of the breast. These may include a bone scan, chest X-ray, abdominal ultrasound or other tests. Most patients do not have detectable disease beyond the breast and underarm at diagnosis, but in those cases where there is metastasis, treatment may differ, so it can be important to check. Your doctor may also order tests to check your general level of health before beginning treatment or to test your eligibility for a clinical trial, or to monitor your tolerance of the treatment. You should feel free to ask what any test is for, and to refuse it if you aren't comfortable with the answer.

You may still be absorbing your diagnosis, but if and when you feel you want it, we have resources for you. Some of what you read in books and journals can be discouraging, but there has been a real improvement in survival rates for inflammatory breast cancer with the introduction of the use of chemotherapy before surgery, and current clinical trials may increase them even more.

The most common course of treatment for inflammatory breast cancer is chemotherapy, mastectomy, possibly more chemotherapy, then radiation. Hormonal therapy may be advised for five years following other treatment, especially if the tumour is responsive to estrogen levels. The drugs used vary widely, since different drugs are approved for use in different countries and research into optimal combinations and dosages is ongoing. If you join a clinical trial, you may be given experimental drugs which have been proven safe and effective, but are being compared to standard treatments. If your doctor recommends treatment outside a trial setting which is very different from the norm, ask why, and what advantage he or she sees in the recommended course.

Whatever course your disease and treatment take, try to stay positive. The period right after diagnosis is almost always the worst, so things will probably be easier once a treatment plan is in place. There is growing evidence that looking after your emotional health will help you to fight disease, and even if it doesn't, it will make each day a bit more pleasant.

The Patient's Pledge

  • I will be heard.
  • I will not be intimidated.
  • I will listen to my body, my symptoms matter.
  • I will be fully informed and be included in the final decision.
  • I will have the best care.
  • I am entitled to hope.
  • I am entitled to compassion and to be treated with dignity.
  • I will stand up for my own best interests.
  • I will praise good care and report bad care.
  • I will be safe.

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