How can I stop my aunt from refusing cancer treatment?

Lucinda asked...

How can I stop my aunt from refusing cancer treatment? My aunt is 56 and has been diagnosed with inflammatory breast cancer. It hasn't spread outside of the breast. She is wanting to refuse all types of treatment including removal of the infected breast. I believe the reasons include money and fear of the side effect of treatment.Can you give some advice on this issue? What would be the effects of the cancer left untreated? What would it entail for me to take care of her?

Expert Answer

Bonnie Bajorek Daneker is author and creator of the The Compassionate Caregiver's Series, which includes "The Compassionate Caregiver's Guide to Caring for Someone with Cancer," "The Journey of Grief," "Handbook on Hospice and Palliative Care," and other titles on cancer diagnosis and end of life. She speaks regularly at cancer research and support functions, including PANCAN and Cancer Survivor's Network. She is a former member of the Executive Committee of the CSN at St. Joseph's Hospital of Atlanta and the Georgia Chapter of the Lymphoma Research Foundation.

Hi Lucinda,

We need to stop and think about something: This may sound a little like "tough love," but why do you specifically want her to get treatment? It could be because you love her and want to see her healthy, or because you're concerned about the ability to care for her, or many other reasons.

It's important to understand your motives because it may be part of why she is refusing cancer treatment. Many cancer patients feel "out of control" because something is happening to them that they did not want and didn't plan for. They can't control people's reactions (like yours) and they can't control their own future.

What they can control is when they make decisions. Remember, she is "captain of her healthcare ship" until such time she signs Power of Attorney over to you and is deemed unable to make her own decisions. This means that regardless of her reasons - fear, monetary concerns, etc. - you must honor them, no matter how painful they are to you. But I suspect that part of her refusal is your insistence. Could you try another approach with her: give her information she needs about the progression of the disease (www.cancer.gov/cancertopics/factsheet/Sites-Types/IBC), as well as treatment options (from her oncologist) and funding options (on indigent programs from various pharmaceutical companies). Give her time to go through the information and understand the pros and cons about treatment. Offer her others to talk with through the Susan G Komen breast care helpline at 1-877 GO KOMEN (1-877-465-6636). Let her know you love her, you'll help out with whatever she decides, and that she can change her mind if she wants to. Then be there when she needs you.

That said, you'll want to do some preparation on your side. Read whatever you give her. Be prepared to talk about it. IBC has a lower survival rate than other forms of breast cancer, so find out the exact prognosis from her doctor and use the time wisely. If she still refuses treatment, do comforting and happy things together. For example, pull together a care basket of wonderful, soothing things to deal with swelling and discomfort of her breasts, like a soft robe, baby lotion, and bath salts.  Ask her how she feels about soft cup, non-underwire bras that will support her swelling - she may need larger bras and many women find comfort in these. Watch for topical infection, which must be treated immediately.  

She may be dizzy, tired, and irritable as well, so keep your flexibility with her changing moods. Suggest a little exercise (like walking), good nutrition and plenty of fluids.

Internally, she may deal with metastasis, or spread. Because IBC is an advanced form of breast cancer, it could spread quickly. With metastasis, there will be many other symptoms, depending on where and how fast. You probably won't know it has spread until you, she or the doctor notice the symptoms. She should still get regular checkups, even if she does not take curative treatment, to help regulate any pain, nausea or other discomfort she may have.

Lastly, if you are blood-related to your aunt, get yourself checked regularly for good breast health. There is some evidence that IBC is genetically linked and you'll want to be in good health yourself to take care of her.