Your mom was diagnosed with early stage Alzheimer’s, and now she’s discovered she has breast cancer. Or you’ve been dealing with breast cancer, and find out that it’s not just chemo-brain causing those bothersome memory loss symptoms… How is breast cancer treatment for Alzheimer’s patients different than it is for most of us? And how do you manage it - as a patient, or caregiver?
Legendary country singer Glen Campbell, age 75. Pat Summit, winningest NCAA basketball coach in history, age 59. President Ronald Reagan. Actor Charlton Heston.
Someone you know and love.
Alzheimer’s Disease - a progressive loss of memory, then personality, then awareness, and finally life itself - will strike about 1 in every 85 people globally by the year 2050. It occurs most frequently in those over age 65, though early stages of the disease are now being identified in younger people.
There’s no known cure; and while theories abound as to its cause, none are proven (except genetics: up to 5% of Alzheimer’s cases are family-related).
Current studies estimate that 19% of Americans age 65-74 suffer from some form of Alzheimer’s. With the first of America’s 70+ million Baby Boomers reaching age 65 this year, let’s do the math: barring any huge advances in research for a cure, over 13 million Boomers may experience Alzheimer’s in the next 20 years.
Age is also a critical risk factor for breast cancer. The older you are, the more likely you are to be diagnosed. Statistically speaking, your chance of developing breast cancer, at age 70, is about 1 in 26: just under 4%.
Which means about a quarter of a million Boomer women may be diagnosed with both breast cancer, and Alzheimer’s, over the next 20 years.
Will you be one of them, forced to hand your treatment decisions over to a (hopefully) loving caregiver?
Or are you a caregiver right now?
Dealing with an Alzheimer’s/breast cancer diagnosis is surely one of the biggest challenges you’ll ever face, either as a patient, or a caregiver.
As a patient with very early stage Alzheimer’s, issues may range from forgetting appointments, to getting lost at the hospital, to neglecting to take medications.
You may not think you need one, but bring a friend or family member with you to every doctor’s appointment - both to make sure you get there, and to take notes during the visit. Even without Alzheimer’s, it’s a challenge to understand and remember the important information you receive from your oncologist; a companion is a definite help.
Also, be absolutely sure that your primary care physician (or whoever’s handling your AD treatment) and your oncologist are speaking with one another. You may assume each knows what treatments the other is administering; but this is often not the case. Your family doctor needs to know you’re dealing with a new and very difficult diagnosis; your oncologist needs to understand the challenges Alzheimer’s may present with your treatment plan.
You should also be aware that surgery may create special issues. The grogginess most of us feel after receiving a general anesthetic is exacerbated in those with Alzheimer’s. In early-stage AD, you may experience a temporary decline in cognitive functioning, worse than what you’ve already been dealing with. This can be both scary, and discouraging. Realize that it’s probably only temporary, and gradually you will (hopefully) rebound, though nothing’s certain with Alzheimer’s.
For those with later-stage AD, the oncologist’s treatment plan will be administered by a caregiver. In fact, that caregiver is probably the person who identified the symptoms that led to a breast cancer diagnosis in the first place.
Since no caregiver can possibly know someone’s body as intimately as the person herself (when she was still mentally alert and able to recognize changes in health), most breast cancer diagnoses in women with advanced Alzheimer’s come quite late. Tumors are larger; the likelihood of spread outside the breast has increased.
In addition, women with advanced Alzheimer’s suffer more debilitating and long-lasting effects from surgery, whether lumpectomy or mastectomy, than do other women. In fact, women with advanced AD who have general anesthesia during surgery often show a mental decline afterwards that never reverses itself; this may be one reason a caregiver is reluctant to put his or her loved one through surgery.
Also, women with advanced AD are less likely to have their cancer treated with radiation and/or chemo. A caregiver may decide that, with his or her loved one’s severely impacted quality of life, the rigors of cancer treatment simply aren’t worth the benefit: prolonging life for those with advanced AD may not always be the goal.
As a caregiver, how do you handle the breast cancer experience?
A lot depends on just how aware your loved one is. For those with early-stage AD, it’s more a matter of reminding and supervising: We’re going to the doctor’s; let’s get ready. Did you take your Arimidex this morning? Let me see your pill-keeper"
For those with late-stage AD, it can actually be somewhat easier; like an infant, your loved one may be (mostly) docile. You can supervise treatment 100%, without having to figure out how much responsibility to take, and how much to leave with the patient.
For those in between, breast cancer treatment can be hugely disruptive. The daily routine is broken. The patient may understand what’s happening one moment, and not the next. If she has surgery, she may or may not experience the devastating decline in mental ability described above. If chemo and/or radiation are given, she may be frustrated by the physical side effects, and not understand what’s happening to cause them, or why.
You, as caregiver, will need the patience of a saint - and more. The national Alzheimer’s Association offers a 24/7 help line; information about local support groups; and online chat rooms and message boards where you can share your concerns and seek support from other caregivers.
Stress levels for those caring for Alzheimer’s patients are way above average; if you’re going to continue to care for a loved one, you have to care for yourself, as well. Take advantage of every avenue of support you can.
November is National Alzheimer’s Disease Awareness Month. Whether you’re a caregiver, or a patient with early-stage AD, take a moment to be nice to yourself. You didn’t ask for this burden; and you don’t deserve it. Simply put, you drew the short straw.
One step at a time - and the same steps, often repeated over and over again - are the path you have to follow. Do the best you can each day, then go to bed without guilt. Get up tomorrow, and do it all again. Until you get to the end of the path.
And please, do reach out for help along the way.
PJ Hamel is senior digital content editor and food writer at King Arthur Flour, and a James Beard award-winning author. A 16-year breast cancer survivor, her passion is helping women through this devastating disease. She manages a large and active online survivor support network based at her local hospital and shares her wisdom and experience with the greater community via HealthCentral.com.