Messages to others

In the interviews we asked if the women had advice for others based on their experiences with breast cancer. One important message was that everyone has her own personal experiences and that these experiences are different for everyone. Despite this, Isla said, “we should be able to support each other and share information and knowledge.” Here are some of their suggestions:

On the overall experience

• Find someone who has already gone through a breast cancer diagnosis and who is willing to share her experiences with you. You can read why and how that was useful for them in finding and sharing information.
• It is important to consider other people’s experiences but ultimately you need to do what’s best or right for you.
• Do not go through this alone; accept services and help offered to you. Find a support group or breast cancer community or any other place where you feel well, and surround yourself with friends and family who support you.
• Do not be afraid to ask or accept help even when this is really hard.
• Remember that it is difficult for friends and family as well and understand that people might say things that are less than ideal.

Treatment and working with health professionals

Women found it hard to remember everything during consultations. They suggested:

• Write down your questions and don’t be afraid to ask them (there are no silly questions).
• Ask for test results and share them with other health providers.
• Be very attentive and slow your care providers down if everything is going too fast
• Tell professionals how you are feeling.
• Take someone with you to appointments.
• Be involved in your treatment, know what is being done, question what the effects of the drugs are and ask yourself if you are really prepared to go through it.
• Remember that you have the right to say no when you feel it is not right.
• Listen to healthcare professionals as a group and get multiple opinions on what you should do.
• Do your research – find and understand information.

Messages about relationships with health professionals were mixed. On one hand it was advised to:

• Not worry but to trust the professionals and use their knowledge. Isla said, “Cancer treatments have come a long way and they actually are very valuable so don’t ignore them and I’d say don’t adopt complementary therapy without the sort of tried and true medical stuff because it’s pretty good and the evidence-base is there for that which is great.”

On the other hand, women advised:

• Never accept no news as good news.
• Change professionals if you don’t trust them.
• Be your own advocate and step up if necessary.
• Nadia (B) advised not to trust the health system and to be proactive yourself.

Women also had some advice for self-management and care:

• Make sure you check yourself regularly and go for regular mammograms.
• Young women need to know that they can also be diagnosed with breast cancer.
• Do not ignore anything abnormal in your breast and don’t delay looking for help.
• Think about getting good health insurance.
• Consider testing in a private clinic to avoid the stress of waiting for results.

You can read more advice from the women we interviewed in relating to health care professionals and perspectives on treatment pathways.

Emotional impact and health

Some women suggested to:

• Acknowledge your fears and don’t keep your emotions contained.
• Do not blame yourself as it can happen to anyone, no matter how healthy a life you may lead.
• It is okay to cry.
• Realize that there is always a bright side and do not try to get into that dark place because it’s not worth it.
• Put in place things that will make you feel better, whatever it is.

To care for yourself and focus on wellbeing, women advised different things that worked well for them:

• You need to stay strong and positive.
• Try to be happy and to be happy with what you have.
• Listen to or focus on your body.
• Know your limitations, or ‘go with your gut feeling’.
• Let things go, maybe things that might have been important aren’t quite as important.
• Take it one step at a time.
• Don’t look too far forward it can be overwhelming.
• Know that you are not alone.
• Embrace all your emotions – don’t feel bad about being sad, and don’t feel bad about being happy.
• Have hope, keep your head up and do things that promote good self-esteem.
• Try to enjoy things that make you feel better such as: to laugh, to enjoy a glass of wine, or to eat chocolate, to eat well, and to do sports or exercise (e.g. walk or do yoga) and to tune in with your body through meditation or mindfulness.

In the pages surgery, chemotherapy, radiation therapy, reconstruction surgery, and endocrine (hormone) therapy you can find more specific advice and messages about each treatment.

 

Advice to family and friends

Women spoke about the impact on their family and friends and how difficult it is for them. You can read more about this in how it affects family and friends. Christa and Shelley spoke about the importance of making sure that they are well and to check if they need support.

Women also acknowledged that others find it difficult to know what to say or do when meeting a cancer patient. Isla said “Nobody becomes an expert in talking to people with cancer.” Advice about relating to women with cancer varied and depended, for example, on a woman’s character, illness and needs:

• Friends and family need to accept what patients are going through and expect an emotional response at times, knowing the person well will likely provide more insight about  what they need.
• Watch, listen and observe to notice if someone is not responding well.
• Consider how this experience can bring you closer together and not tear you apart.
• Look for concrete, practical things that you can help with or something that will make the person feel good about themselves such as: help out with the kids, find information, cook, clean, make sure they eat healthy food, pick up the phone and talk, bring coffee, and/or reach out through social media if that is easier for you.

Women said it helped when:

• People continued treating them the same as always.
• People talked about more than their cancer or as Jocelyn said “I am more than cancer”.
• Friends and family just came to be there with them, but respected when women wanted to be alone or needed no help.
• People were not afraid to help or to visit even when they didn’t know what to say. Do not walk away, and it is never too late.
• People have the courage to make the first contact; they just need to try. Saying something like “you’ve had a rough year. How are you feeling?” may work well.

Things that some women advised not to do included:

• Looking at us with pity, as it is the hardest look, using standard sentences, or speaking too much about your own problems, or looking at us as if we are about to die.
• Whispering quietly as if afraid to speak, or putting your arms around them in the wrong moment.

Women relayed the message that it was important to find the right balance in offering help. Malika felt it was important to not be telling patients always to be positive, that it is normal as well to feel and think about the less positive issues.

A final piece of advice was to remember that patients may not be back to their old self within a year. The person may still be tired, or affected in other ways by the illness.