So, your parent got a tough diagnosis. Now what?

Making sense of second opinions, treatment options, and tough conversations.

At first, when we were told my mother had cancer, we were hoping it was thyroid cancer. The five-year survival rate for thyroid cancer is 98 percent, which means that 98 out of 100 people who are diagnosed with thyroid cancer will still be alive five years after that diagnosis.

What we didn’t want, the doctor said, was lung cancer that had spread to her thyroid. My father and I, both lifelong atheists, prayed that it was thyroid cancer.

Initial testing showed that it was indeed thyroid cancer, but the doctor told us they suspected it was a rare form of thyroid cancer. They would have to do further testing (a fine needle aspiration) to find out precisely what type. If it was a rare type, the survival rates were lower.

At that point, we prayed for the other outcome. It would have been better if she’d had lung cancer, after all.

The test revealed she had anaplastic thyroid cancer, which is the rarest form of thyroid cancer, accounting for less than 2 percent of all thyroid cancers. The American Thyroid Association calls it “one of the fastest growing and most aggressive of all cancers.”

The average life expectancy of someone diagnosed with anaplastic thyroid cancer, without treatment, is six weeks from diagnosis. With aggressive treatment, including not only surgery but also both radiation and chemotherapy, life expectancy increases by 3-5 months. My mother received both radiation and chemotherapy, but not surgery, and she got less than three weeks. She was diagnosed on February 21, and died on March 13.

My mother was diagnosed in 2007, and I remember Googling “anaplastic thyroid cancer” but not finding much information. The internet was different then. There was no AI summary of the results, no easy access to dozens of scientific abstracts on treatment modalities and outcomes. I told my mom that I read that 98 percent of those with thyroid cancer live five years or longer.

She shook her head. “Not this kind, Lolly.”

Most of Learn From My Mistakes has been about things I wish I had done when my dad was in the last few years of his life, and that’s for two reasons. First, I didn’t have as much time to make mistakes when my mom was sick because she was only sick for a few weeks, and she died before her 56th birthday. And second, my dad handled a lot of the logistics when my mom was sick.

But there are some things I wish I had done differently with my mom, too, or at least things I would do differently if it were happening to 43-year-old me instead of 24-year-old me.

This is what my mom still looks like in my head: short hair, big plastic glasses, delighted to be my mom, always lifting me up.

So, if your parent gets a tough diagnosis, what do you do next?

First, I want to say that I’m so sorry. Dealing with news like this is really hard. It brings up anticipatory grief at the same time you’re handling so many logistics and charting what feels like new territory every day. You’re probably overwhelmed, and that makes sense with everything on your plate. I’m wishing you peace and ease as you navigate this. I hope thinking through the following advice helps you in some small way.

Should you get a second opinion?

With anaplastic thyroid cancer, it seemed to me like a thing you either had or you didn’t, and she did. The doctors at the time didn’t indicate that there was any room for error. But a study of the exact procedure used with my mom to determine what kind of cancer she had showed that in more than 25 percent of cases, the primary diagnosis differed from the second opinion. But that doesn’t necessarily mean the first opinion was wrong, and it’s unclear whether second opinions lead to better health outcomes overall.

In considering my mom’s case, did we have time to get a second opinion? Would her insurance have covered it? Would she have had to travel to get it? I’m not sure what the answers are to these questions, but I know I didn’t ask any of them, because I was intimidated by the doctors, and inexperienced in the medical system. I barely questioned anything.

When you’re facing the decision of whether to get a second opinion, ask:

• Are there multiple treatment options available?

• Was the doctor sure of the diagnosis?

• Does my parent completely understand this doctor?

• Does our family feel confident in their diagnosis and proposed treatment?

• Does this doctor specialize in this type of cancer (or other illness)?

• Will my parent’s insurance cover a second opinion? What about redoing various tests?

• Might there be clinical trials in which my parent can participate? Does their doctor know about any trials?

How do you make sense of the prognosis?

When your parent is diagnosed with a serious illness, one of the first things people will ask you (trust me) is whether the doctor told them how long they will have to live. Every single person you tell about this diagnosis will either ask you directly or wonder it in their heads and Google it later.

You can ask your parent’s doctor about the time they have left, and they are likely to use a combination of statistics to give you a ballpark answer. For cancer, doctors estimate based on survival rates (statistically, what percentage of people with a given diagnosis are still alive five years after their diagnosis).

I’ve known people who didn’t really want to know, or think about, how much time they had left. I get it, on some level. It’s not an exact science, after all, just probability. But I do think knowing the estimate of how much time you have left allows you to make decisions about how you spend the remaining time. My mom had very limited time, so I dropped everything in my life in Pittsburgh and came to Florida immediately. My best friend was in the Peace Corps in Moldova at the time, and she made the long trip back just to see my mom. If she had waited even a few days more, she would have been too late.

But when you’re given an estimate of how long your parent has, it’s important to take it in context. In Atul Gawande’s book on aging and dying, “Being Mortal,” he describes a study led by Nicholas Christakis, who asked doctors of 468 terminally ill patients to estimate how long they thought their patient would survive. They followed up to find out how long they actually survived, and 63 percent of doctors overestimated their patient’s survival time. Just 17 percent underestimated it. The average estimate was too high by 530 percent.

I can’t remember exactly how long my mom’s doctors estimated she had left, but I know it was longer than three weeks. I hate to tell you this, but when your parent’s doctor estimates how long they have left, you can probably bet that they’ll actually get a bit less.

Why does that matter? For one thing, it helps you decide what to do next.

How do you decide between treatments?

Once your parent gets their diagnosis, they’ll likely have to make some decisions about which course of treatment to pursue first. If your parent is still making a lot of their own decisions, your role is probably to support them, help do research, and encourage them to weigh the pros and cons.

Here are some questions you can ask about potential treatments:

• Do we have more than one option for treatment? How would you recommend we decide between them?

• What are the short- and long-term side effects of this treatment? How long do they last?

• Does my parent need additional testing before undergoing this treatment?

• How long does the treatment take?

• Are there clinical trials to participate in? What information can you give about those trials or the process of joining trials in general?

• How long might this treatment extend my parent’s life?

• Is this disease curable? If not, what are your goals with this treatment?

• What are the likelihoods of relapse/recurrence with each treatment?

• How do my parent’s other health problems factor in?

• When does treatment need to start?

• How will we know whether the treatment is working?

• What’s next if this first treatment doesn’t work?

• Have you had other patients have success with this treatment? What did that success look like?

• What would happen if my parent chooses not to undergo any treatments?

• When will we talk to you about this again?

It’s time to get support

There are support groups for almost every kind of tough diagnosis. Google “thyroid cancer support group” or ask at your parent’s doctor’s office. Check the website of your local university. There are also specific programs designed to help you make treatment decisions, like the Cancer Support Community’s Open to Options, which uses a one-on-one interview process to help figure out what questions to ask when you’re facing a treatment decision.

My mom’s best friend was diagnosed with a form of Parkinson’s. There’s a great resource for folks with that diagnosis at the Michael J. Fox Foundation, a free, downloadable book that walks you through the treatment options, symptoms, and possible courses the disease may take.

Whatever your parent’s diagnosis or diagnoses are, there are likely evidence-based resources out there to help you navigate what comes next, as well as online (and in-person) support groups. You don’t have to learn everything from scratch, there are people who have gone down this road before, and there are other adult children of parents currently experiencing things similar to what you’re going through. Maybe you’re a Type-A Eldest Daughter, but you still don’t have to do it all by yourself.

Should you think about palliative care?

There’s a difference between hospice and palliative care. If your parent recently got a tough diagnosis, it’s worth thinking about both. Palliative care can be done alongside any curative treatments, whereas hospice are is generally done instead of curative treatments. Essentially, thinking about palliative care means looking more holistically at what’s happening and figuring out what can be done to manage your parent’s symptoms and their pain. One way to phrase it to your parent’s doctor is, “What can we do to make sure she maintains a good quality of life throughout these treatments?”

I don’t know if it counts as palliative care, but one thing I’m glad I did when my mom was sick was ignore the food restrictions. She had a huge tumor in her neck and couldn’t swallow properly, so they tried to feed her these milkshakes—they put a regular meal, turkey or meatloaf or whatnot into a blender—but I was not having it. I stopped at the Dairy Inn on the way to see her and got her a normal strawberry shake. I acquiesced to the demand that she not eat her favorite solid foods, but no way was I letting her drink pureed meat.

Plan for the future

Ask your parent’s doctor what the next few weeks or months are likely to look like. If they have things they want to do, things that take energy or wherewithal or strength, consider prioritizing those things as soon as possible. Do they have a bucket list? It’s time to check some things off. Ask your parent what their goals are—you may be surprised! And try to reflect on what your own goals for your parent are, too, and to take some time to accept that these are likely different from your parent’s goals.

When your parent gets a tough diagnosis, it may be the thing that gets you to finally start talking with them about death. This is a conversation so many of us avoid, but it’s so essential. I watched two precious people die last year by wasting away in a bed, barely eating, barely speaking, pain abated only intermittently by increasing doses of morphine. My own father died after being intubated and kept alive for hours by machines. That is not the death he would have chosen, had he been able to choose. I urge you to start slowly talking with your parent about the kinds of things they want and don’t want as they approach their final days, weeks, or months.

Maybe this is an inflection point

Once you get a diagnosis, it can be an inflection point. Maybe it spurs you to have a conversation you’ve been avoiding with your siblings. Or maybe it gets your parent to finally consider moving into assisted living. I’m not going to tell you that there is a bright side to a tough diagnosis—this is hard and bad, there’s no way around that. But it may be hard and bad and also an inflection point.

As of tomorrow, my mom has been gone for 19 years. It’s wild to think how long I’ve been without her and how many different people I have become in that time, and how emphatically and viscerally I still miss her. Mothering without a mother, parenting without a parent, is hard. My wish for you, receiving this tough diagnosis, is that you give yourself the grace to admit how hard it is, ask for help when you can, and take the time you need to take care of yourself when you can.