The treatment for inflammatory breast cancer is a little different from other breast cancers.
The usual treatment for IBC is chemotherapy followed by mastectomy, possibly more chemotherapy and radiation. Many women follow this aggressive treatment with Tamoxifen, a hormonal therapy which helps prevent recurrences in the affected breast and new tumours in the opposite breast. As a rule, chemotherapy is more likely to be effective in pre-menopausal women and hormonal therapy is more likely to help post-menopausal women, but many doctors give both to IBC patients of all ages to give the best possible odds of survival.
At diagnosis, IBC is a diffuse cancer which has usually invaded the lymph system of the skin and the axilla when it is found. Experience with IBC has shown that the tumour is often very sensitive to chemotherapy. After the chemotherapy, surgery and radiotherapy are often easier to perform. Trials have demonstrated that the best treatment for IBC consists of chemotherapy (for suppression of micrometastases) and surgery with radiotherapy (for suppression of the cancer on the chest wall).
The treatment described above assumes that your cancer has not spread beyond the area of the breast and axilla. If it has, your options are more limited, and will probably consist of initial chemotherapy and hormonal therapy and then more chemotherapy, radiation and experimental therapies if and when you suffer recurrences. In cases where there are distant metastases, surgery can actually be harmful, delaying the use of systemic treatment and possibly speeding the growth of the cancer.
Keep in mind that treatment options may be limited by factors like age and previous medical history, which are out of your control, or by your initial treatment decisions, which you do control. Many clinical trials which offer great care and the most promising new treatments exclude patients with prior chemotherapy or radiation, so try to be sure your doctor has given you all the options before you begin any therapy. Unfortunately geography and economics may also affect your range of choices, especially in less developed parts of the world.
This guide is for non-medical people; if you know all about oncology, then you'll be able to read and understand the medical literature on the subject.
Chemotherapy works by killing cells in the body as they divide. Since cancer cells divide frequently (especially in aggressive cancers like IBC), many cells are vulnerable at any point in time. Combinations of drugs which attack cells at different points in the division process increase the effectiveness of each treatment. Some tumours react more or less to different kinds of drugs, and the treatment varies a lot between patients. It is not uncommon to change drugs or dosages during treatment, especially if the cancer does not respond well. Unfortunately some tumours are multi-drug-resistant, and if you don't respond well to the first couple of drug combinations, you are likely to have limited response to others. Cancer cells have defences, and over time they become resistant to even the drugs that worked well initially. That, and the fact that some of the most effective drugs have maximum lifetime doses means that any recurrence is likely to be treated with a different set of drugs than you had as neo-adjuvant or adjuvant therapy. Fortunately new drugs are being developed all the time, some with surprisingly few side effects. Make sure you understand both short and long-term side effects of a protocol before giving your consent.
You will probably be given chemotherapy as an out-patient. To determine the correct dosage, calculations will be made based on your height and weight. This is pretty crude, and adjustments will be made once the medical team see how your body reacts. In cases where the initial dosage is too high, you may end up vulnerable to infection or even hospitalized for a few days. After the first dose of chemo, you'll have blood tests to check how well your blood cells have recovered from the last visit, and if your counts are too low, there may be a delay of a few days to a week or a reduction in the dosage. This is normal and nothing to worry about.
For the treatment itself, some hospitals put several patients in one room, while others give people private space. You will sit in a comfortable chair where they will hook you up to an intravenous (IV) drip. Rather than damaging veins in the arm, many people prefer to have a catheter inserted surgically into their chest or arm that will allow the drugs to go straight into the blood stream near the heart. There are several different types; each has advantages and disadvantages and all types require periodic flushing by you or a nurse. If you want more information on your options, talk to your doctor.
Before and after the chemo drugs you will be given medications for nausea and plenty of fluids. Most drugs are added to the stream of IV fluid before it enters your arm. Some may be prescribed in pill form for you to take at home. You shouldn't feel any pain as the chemotherapy is administered, although it may ache if the nurse uses too much pressure. There might be a slight tingling in your arm, nose or other parts of your body. The whole process, from blood test to departure, takes a few hours unless you are having drugs in a pump or slow drip.
Because chemo kills dividing cells, it also kills non-cancerous cells that divide frequently. There are three main areas of fast-growing cells that suffer: hair follicles, the digestive tract including mucous membranes of the mouth and throat, and the bone marrow. As a result, the main side effects are hair loss, mouth sores and nausea, and susceptibility to diseases (because white blood counts drop) and tiredness (because red blood counts drop). Every drug is a little different. The Taxanes such as Taxol or Taxotere often cause muscle spasms, bone pain and can cause numbness or tingling in the hands and feet, but are fairly gentle in terms of nausea. There may be inflammation of the veins used for the IV, but this usually settles down in time. In very rare cases there may be permanent damage done to veins, bone marrow or organs which require further care or monitoring. Make sure your doctor knows about any severe side effects you are having. In almost all cases, he can offer advice or medications to help.
You may be advised by your oncologist to do high dose chemotherapy . This involves higher doses and/or more frequent infusions, often with some kind of support for your bone marrow. The support could be a bone marrow or stem cell transplant or injections of various growth factors that stimulate production of new blood cells. High dose chemotherapy is a fairly new approach, and it has not yet been proven more effective than standard doses, although it has become pretty standard treatment in the United States. HDC is best done at a major hospital or one with lots of experience, since the immunosuppression caused by the high doses can lead to mortality rates of up to 10% from the procedure itself. If you are interested in HDC, doing it within the context of a clinical trial will guarantee a good level of care and help medical research to determine which are the most effective treatments.
Most surgeons will recommend a modified radical mastectomy. In the old days, surgeons performed radical mastectomies, which involved removal of the breast, the chest muscles, all the lymph nodes under the arm and sometimes ribs. This was deforming, painful, and unnecessary in most cases, since it didn't prevent the growth of distant metastases. The modified radical mastectomy is a variant on the same theme, but only the breast and some of the lymph nodes are removed. Lumpectomy may be possible if the neo-adjuvant chemo is very effective, but is probably unwise given the aggressiveness of IBC. A radical mastectomy would normally only be considered now if the cancer was known to have invaded the muscles of the chest wall, so if your surgeon recommends one, get a second opinion before agreeing.
The removal of lymph nodes has two purposes. The main one is diagnostic, and this may soon disappear, since the surgery is painful and leaves a lifelong risk of lymphedema, a potentially permanent and disabling swelling of the arm. New diagnostic methods are in trial right now that could show the condition of the nodes without extensive surgery. The other reason is the removal of cancer that has invaded the nodes and could grow and spread even after the primary tumour in the breast is removed. The combination of surgery and radiation to the underarm leaves a risk of lymphedema of 20-40%, so some women opt for just one of the two and accept the higher risk of local recurrence.
After surgery, the surgeon will leave one or two drains in the area, which connect to fist-sized bulbs that fill up with fluid from the area. This fluid is nothing to worry about -- it is the same stuff that blisters are made of, possibly with a bit of blood for the first couple of days. The drains will be left in for about a week after surgery, until the amount of fluid drops to a level your body can reabsorb. The bulbs hang down below the waist, and can be tucked into your underpants, pinned to clothing or carried in a belt pouch.
You'll probably be given exercises to regain the full range of arm motion after surgery. Performing them a couple of times each day for a month or so ought to return full mobility of the arm, but carrying heavy objects should be avoided for a couple of months longer, and some experts advise women to avoid using the arm for carrying more than five or ten pounds ever again as one measure to prevent lymphedema. This is a luxury you may not be able to afford, so just be sensible and listen to your body. If your arm swells slightly after any activity, you probably overdid it.
When you look at your incision is a personal decision. Some women look as soon as possible, others wait until the stitches are gone, others even longer. You will be living in this body, so it makes sense to do your best to feel comfortable in it. Most women and their partners are relieved when they finally look at the mastectomy scar. Breast reconstruction is an option for most patients, but some surgeons like to wait for months or years after all treatment is finished before considering it. IBC patients may have limited reconstruction options because of the use of post-mastectomy radiation, but there is usually at least one method that will work for your body type and history.
Radiation damage is cumulative, and the treated area will be recorded and marked with tattoos so that other doctors know not to treat the same area a second time. In most cases, visible signs of treatment disappear in a few months, but there are invisible changes that last the rest of your life. The treated area may react to the sun more quickly, and the skin will lose elasticity. If radiation touches the heart or lung, as it generally does with radiation for IBC, there can be scarring and some loss of function. There is also a slightly increased risk of cancer in areas which have been irradiated, especially if the patient is still growing. Most patients with breast cancer who have radiation have it to the breast (after lumpectomy) or chest wall (after mastectomy). In cases of high risk like IBC, a larger area may be targeted, stretching from the side of the neck to the upper arm and down to the bottom of the rib cage. This area includes the mastectomy scar, chest wall and lymph nodes under the arm and near the collarbone.
Your radiation treatments will be planned in a simulator that moves like a radiation machine, but uses only normal X-rays and light. When you receive a treatment, the technicians need to leave the room, but they remain in contact via camera and microphone all the time. The radiation cannot be seen or felt, and it takes 7-10 days before any visible changes appear. At that point, your skin may begin to feel slightly dry and take on a tanned or sunburned appearance. This will increase, and there may be soreness and irritation toward the end of the course and for a week or two afterward. Aloe vera and hydrocortisone cream are usually all you'll need for comfort. If the skin breaks down and starts oozing, you'll be given saline packs and detailed care instructions.
If you need radiation therapy for a recurrence of IBC, it may be a bit different from initial treatment. Despite what you read above, more radiation to a previously treated area is possible if there is no better alternative. Treatment of a local recurrence near the mastectomy scar might involve radiation which is targeted at the skin and does not penetrate very deeply. If the recurrence is in another part of the body, a few intensive treatments may relieve pain and shrink the new tumour. Since there is a location on which to focus in these cases, the area to be radiated can be kept small.
Another hormonal approach which was common before the development of modern chemo drugs was the removal or disabling of the ovaries. It was especially effective in young women, with 30% responding at least temporarily. This is uncommon today, but may still be recommended for pre-menopausal patients with metastatic disease, since their poor outlook makes fertility less of an issue. The side effects of hormonal treatment are often much more tolerable than those of more toxic chemotherapies.
One common theory is that the more chemotherapy is used, the better the response. This has led to experimentation with extremely high doses which would be lethal if the patient were not given some kind of protection until the immune system can recover or be restored by infusions of stem cells or bone marrow. Many IBC patients, especially in the United States, are told that high-dose chemotherapy with stem cell rescue (HDC/SCR) is their best or only chance at a cure or extended survival. This is at best a stretch, since the only completed studies have been shown to be biased towards HDC/SCR. Unbiased studies are under way (and are seeking partipants), but as yet there is no conclusive data to support the superiority of either high-dose or conventional chemotherapy.
The whole principle behind HDC/SCR may be flawed, and it may be more like antibiotics -- if you pick the wrong one, higher doses won't make any difference. It's also possible that since the doses we're talking about can only be used once or twice, some cells won't be dividing while the drugs are in your system and will survive, while more doses at a lower level would have killed more.
In HDC/SCR protocols, stem cells or marrow are collected before the high doses are given. The chemotherapy is given in hospital, and there is usually an extended stay either in hospital or a nearby facility while the blood counts drop, the cells are reinfused, and the counts recover. Visitors may be restricted, especially if they could be ill. Side effects range from moderate discomfort to vomiting, diarrhea and delerium. Some protocols cause moderate reversible damage to the lungs or heart, and in a few cases the blood system never fully recovers, leaving a need for regular transfusions.
Right now, HDC/SCR is relatively safe, with 0-5% mortality from the procedure in the better programs. What still have to be established are the longterm side effects and impact on survival. With both standard and high-dose protocols changing every year or two, it's not an easy comparison to make. Some experimental "conventional" protocols incorporating growth factors or monoclonal antibodies have been showing huge improvements over the CAF that was common ten years ago, and possibly higher than the best ongoing HDC/SCR studies. In short, the results aren't in yet, but you have to make a choice. Make sure you know all your options, no matter what country you live in.
Reconstruction is a consideration for some women. Should I? Shouldn't I?
Reconstruction is part of insurance coverage almost without question in the United States, including the surgery needed to make a woman symmetrical and even. Sometimes though, it is not recommended for IBC patients because of possible recurrence. For the same reason, it is usually delayed for a year or more after NED status.
After radiation of the affected side, the choices for reconstruction are limited. Radiation changes the integrity of the skin making expanders and implants nearly impossible. At one time the TRAM Flap and Latissimus Flap were the only choices. Either one can be done by tunneling the still connected tissue to the breast area. They can also be done as free flaps, where the tissue is cut free and then microsurgically sewn to the breast area. Both, however, take muscle. The TRAM takes the muscle from the abdomen, the Latissimus from the upper back.
Within the past several years, new less invasive reconstruction has become more and more available. The DIEP, SIEP, and GAP use skin, fat, and the blood supply without cutting into the muscle. There are not yet many surgeons who do these types of reconstruction; but it is changing and well worth exploring.