If you suspect IBC

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If you suspect you have IBC, see your doctor IMMEDIATELY. Do not delay. Don't worry about making a big deal or being a nuisance. Your appointment should take place within days of symptoms appearing (not weeks or months). Too many cases of IBC are diagnosed too late, at Stage 4, once it has already metastasized. Do not put off being assessed because you are too busy, you can't get a sitter, have a work deadline, it's a long weekend or you are leaving on holiday. The appearance of IBC symptoms are a very urgent and serious matter and need to be treated as such. If you do end up having IBC, the sooner your treatment starts, the better off you will be. 

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Following a diagnosis

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Asking for help from your medical team 

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A diagnosis of IBC can be terrifying. The time between confirmation of the diagnosis and the start of treatment can be an especially agonizing wait and very stressful. Do not hesitate for one second to ask your medical team for help in managing the fallout from the diagnosis.

 

FYI, IBC patients at one time or another have benefitted from one or more of the following:

• psychotherapy, counseling, coaching (ideally with a professional experienced in helping cancer patients)

• sleep aids and/or medication (you are going to need every ounce of energy you have, staying awake all night imagining the worst isn't going to do you or your loved ones any good)

• anti-depressants (it's perfectly normal for a diagnosis to cause depression. Take medication if you need it. You have a tough road ahead, it's OK to take all the help you can get.)

• anti-anxiety medication (for some patients, this can be a great help in getting through the first appointments and scans).

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Asking for help from family and friends

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Chances are that you are used to looking after everyone else. Being diagnosed with IBC is the breast cancer equivalent of being hit by a truck. It's now your turn to ask for and accept help. You will not be able to get through this on your own, especially if you have children. While you will receive all kinds of offers of help from family and friends (and all kinds of advice, some useful, some not), it is a good idea to specify what kind of help you need and when. For example:

• buying groceries once a week

• preparing and freezing healthy meals

• rides to and from appointments

• company while exercising

• taking children to school, after school activities, or inviting them for sleepovers

• help with household chores (cleaning, laundry, gardening)

• help with paperwork and bills (there's a lot of paperwork to manage with cancer--insurance forms, doctor's notes, information about medication--that can be hard to keep straight, especially with the brain fog that can accompany cancer treatment).

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Supports groups

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Join as many support groups as you can as soon as you can, online and in person. See our Support page for more information. It can really help to meet and get to know other patients who know exactly what you are going through.

 

Exercise

 

Exercise is critical for maintaining energy levels and optimal health during treatment as well helping to prevent a recurrence in the long run. You don't need to start running marathons.  Talk to your medical team about what kind and how much exercise you should be getting every week, especially if you weren't exercising regularly before diagnosis. There may be special exercise clubs or groups in your area for breast cancer patients and survivors. It helps to have exercise buddies. While it will be tempting and totally understandable following a diagnosis to take to your bed/couch and eat carbs, exercising during treatment can make a big difference to your overall health and outlook.

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Examples of exercise that some IBC patients have enjoyed during treatment:

• going for walks (free and requires no equipment other than comfortable shoes)

• biking in good weather or using a stationary bicycle during the winter 

• gentle yoga (ask your yoga instructor for modifications that take into account any treatment or other limitations you may have)

• going to the gym (as long as you take precautions to avoid getting germs, like wiping down equipment before you use it and frequently washing your hands during your workout)

• online workouts (the free workouts at Fitness Blender were recommended by a physiotherapist to one IBC patient).

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Diet

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Other than eating healthy, well-balanced meals, there is no specific diet to follow during and after breast cancer treatment. While on chemotherapy, your medical team may advise you to avoid some foods to prevent interactions with your chemotherapy medication or lessen the chance that you might get sick from what you ate because your immune system is weakened.

 

Beware the one-size fits all advice in some well-intentioned cancer nutrition literature. Some cancer patients lose weight during treatment and therefore need to increase their caloric intake. Many breast cancer patients, however, GAIN weight during treatment, which makes much of the cancer nutrition literature unhelpful and inapplicable. If you have questions or concerns about nutrition during breast cancer treatment, talk to your healthcare team who will likely refer you to a cancer nutritionist. 

 

There are many excellent books and web resources on healthy eating, including healthy eating and cancer. Here are some IBC patient and survivor favourites: 

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• A Nutrition Guide for Women with Breast Cancer. BC Cancer Agency and Healthlink BC.

• Eating well after breast cancer. Canadian Cancer Society.

• Foods that Fight Cancer: Preventing Cancer through Diet. Book by Canadians Richard Beliveau PhD and Denis GingrasPhd. (apparently sold 200,000 copies in Québec and 450,000 copies worldwide).

• Nutritionfacts.org (by Dr. Michael Greger, author of the New York Times bestselling book How Not to Die)

• Dr. William Li's 2010 Ted Talk "Can we eat to starve cancer?" and his Eattobeatcancer initiative.

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Complementary treatments

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If you live in a large enough city, there may be naturopathic/complementary cancer (not alternative) treatments available to you provided by private clinics. These are treatments you can undergo while receiving standard cancer treatment from your hospital's cancer center. Note that there are NO alternative IBC cancer treatments. Anyone claiming to cure breast cancer with supplements and/or diet alone is a quack. Note that not all naturopathic/complementary practitioners are created equal and that treatments can be expensive (and are often not covered by public health plans or private health insurance plans (or only partially covered by private insurance).

 

An excellent example of integrated care is the Ottawa Integrative Cancer Center, which has gained the support of oncologists and medical faculty members in Canada. More information about their mission and services is available on their site.

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Chemotherapy

 

​Hair

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You hair is going to fall out within a couple of weeks of starting chemo. Most IBC patients and survivors recommend first getting a shorter haircut once diagnosed (to get used to shorter hair), then shaving it off before your hair starts falling out. Losing your hair can be depressing and it helps to control when and where you lose your hair.

 

Wigs: some patients love their wigs, others couldn't wear them at all because they were too hot or itchy (especially in the summer) or just didn't look right. It's up to you. There are many attractive and funky wigs and alternatives to wigs, like soft "chemo caps" and scarves.

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Surgery

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Arms & Shoulders

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During the surgery, in order to access the lymph nodes in your armpit, the surgical team will place your arm up over your head on the operating table for the duration of the surgery. This can result in considerable post-surgery shoulder pain, especially if you weren't very flexible to start with or already had shoulder problems.  Some IBC patients have found it helpful to practice lying down on the floor (on a yoga mat or carpet), with their arms stretched out over their heads in the week(s) prior to surgery to increase flexibility.

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It is important to start the post-surgery arm exercises as soon as you can. Unlike most other breast cancer patients who have surgery first and then months of chemotherapy during which to recuperate from surgery before radiation, IBC patients start radiation 4-5 weeks following their surgery date. This distinction is important. In order to fit into your radiation machine, you need to be able to lift your arms up over your head, lying down. IBC patients have considerably less time to recover from surgery and be able to get into this position than most other breast cancer patients. If you have difficulty with your exercises or lifting your arms, do not hesitate to contact your medical team ASAP and ask for a referral to a physiotherapist (which may be covered by your public healthcare plan). Delays in your being able to lift your arms over your head can delay the start of your radiation treatment (which should be avoided).

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Radiation

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For some radiation is the easiest part of treatment, for others it can be difficult. Try to think of time in the radiation machine as time to focus on yourself, on your breathing, practice meditating. Ask the radiation technicians to play soothing music while you are in the machine. Your treatment will be over before you know it. 

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You may get radiation burns and your skin may begin to peel (especially high friction areas like your armpit). Wearing loose clothing (no bra) helps. Some radiation teams recommend their patients use 3M Carillon No Sting Barrier Film, which can help protect your skin from friction and assist with moisture management. 

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Survivorship

 

It's perfectly normal to think that every new ache and pain or skin irritation is a sign of disease progression or a recurrence. Many of us spend hours on Dr. Google looking up symptoms and distressing images of advanced IBC cases. Don't do this. Being diagnosed with IBC can make you hyperaware of changes to your body. If you have any concerns about new symptoms, contact your medical team promptly. They are best placed to assess you and provide guidance on what to look out for and when to simply close your web browser and go for a walk.

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If you were lucky enough to be diagnosed at Stage 3 and to have successfully undergone treatment (chemo, surgery, radiation), the conclusion of this active treatment phase can be a challenging period. During treatment, you were on a kind of medical conveyor belt, moving from one phase of treatment to the next. You would expect to be thrilled to be done (of course you are) but it can also be disconcerting to be left to your own devices in the seemingly long stretches of time between checkups.  It's something you learn to adapt to, just like you adapted to your treatment.

 

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