Second opinion, part 2

So I got a second opinion at the Dana-Farber Cancer Center last fall. If I had been expecting something big and different from my consultation there, I would have been disappointed. If, like my husband, I was looking for confirmation that things were already going as well as possible, then I went to the right place.

Once it became clear that we were definitely going to Boston, a number of things happened. For one thing, my plans became divided into “before” and “after.” It became something big that was going to determine what happened next. Thanks to the connections of a family friend, I was able to get an appointment with one of the world’s top oncologists in the team there. My own terrific oncologist here in London had done a fellowship there, and facilitated matters helpfully, since the transfer of medical records is still supposed to happen by fax (???), thus upsetting my geeky husband for, like, the rest of time. Quite a few people, from the neurosurgeon to the oncologist, mentioned that they were curious to hear more about what I learned in Boston.

It’s always a pleasure to go back to Boston! So we drove there, stopping at Rob’s parents’ place one night so as to stay in Canada, where I have actual health coverage, for as long as possible. Then our friends Kathryn and Ned generously had us stay with them in Cambridge, from which we were able to walk, on a gorgeous fall day, to the Dana-Farber Cancer Centre, which I had by then come to think of as the Centre of the Universe. As we turned onto Longwood Avenue, it was funny to think about how a street that for me had always signified a busy place to be avoided, was a busy mecca for patients from around the world. Here, it seemed, every building was named after an important donor, and deliverers of care rushed off to their important jobs.

From there we went to the International Patients Office, which is I guess where international patients go. As we listened to the families around us speaking Mandarin and Arabic, it was a nice reminder that people come from all over the world to consult at the CotU. Then we had to go up to the billing office and pay for our consultation because money and health care must never be separated in the U.S. Finally, we went to the actual breast cancer floor and met with a fellow to go over my medical history, before meeting with the medical oncologist and his coterie of fellows.

As I wrote earlier, there was not a whole lot new in these meetings. I had to explain to the fellow who took my health history that Ontario will not pay for more than 2 lines of treatment, so the decision to switch to a new one was a big decision. He was surprised at this, having seen an American woman just that morning who was on her SEVENTH line of treatment. Everyone was impressed with the quality of the records that had been sent from Canada, and everyone wanted to oooh and ahhh over my excellent brain surgery. “What brain surgery?” the fellow joked after running me through the requisite assessments. Also, the fact that I walked there from Cambridge was a matter of some comment.

In fact, no one knows what to do about these troublesome brain tumors, I was told. Previously these have been attributed to the “blood-brain barrier,” which was viewed as not letting drugs in to the brain. But the oncologist told me, “We’re rethinking the blood-brain barrier and why the brain seems to be extra hospitable to tumors for patients like you.” There are quite a few clinical trials happening at CotU right now, and none of them are quite right for me. I’m doing too well on the standard of care to warrant doing anything different. But! I can come back when I’m not doing as well.

I find this a fairly reassuring place to leave things, since I learned that I’m getting very good care and doing well, and that I’m living at the edge of knowledge right now, with my body getting the best that medicine has to offer, and clinicians, I hope, working on developing more treatments for people like me.

Jill

In my imagination, at least, Jill looked a bit like me. She also looked like Erin Karpluk, the Canadian actress who starred in Being Erica. She had a laugh that lit up the room because it was loud, sudden, and bold.

We met when I was teaching history and social studies at Newton North High School. My partner from across town had to bow out of a trip to China, so Jill stepped in, fluent in Chinese, travel, and Newton education.  Jill was easy to travel with, or perhaps ideal. She would fearlessly try food, experience, or social interaction. She simultaneously had an open mind and a sense of humor. In my mind, we were always friends, even as our lives took us in different places.

After Jill moved first to New York and then to London, England, I made a point of seeing her when I could and staying in occasional touch.  Jill earned a degree in social work and had a vibrant social life. She organized domestic workers in New York and sought out new adventures in the UK with her partner of many years. We kind of lost touch but also lost opportunities to reconnect as life got busy, and my moving and having two small children did not help.

One night when I was doing dishes, The Historian came in and said, “Um, do you know what’s going on with Jill?” to which I said that I did not. “I think she has cancer. Actually, I think she may have died.” I had to sit down. A little internet searching showed that this was, indeed, the case. In the time since I had lost touch with Jill she managed to be diagnosed with a rare and aggressive cancer and to die. I learned of her death only as the 1-year anniversary of her death approached, as friends commented on FaceBook that they were looking forward to gathering in commemoration of Jill. My searching did not reveal much, or maybe I could not stand to seek out more information, so sad and ashamed was I not to be more a part of Jill’s life in those difficult late times. I had always thought that we would reconnect at some point, but instead I spent a few days of my early 40’s wandering through life thinking, “I will never get a chance to tell Jill how much I loved her.” I hope she knew, but I doubt it.

This taught me many things, like that life can be fleeting and terribly unfair. My searching showed that Jill died surrounded by caring people that she loved, reminding me that my own piece of her life was probably quite small and not terribly significant. At the same time, she inspired me to later shoot my mouth off to various friends, telling them, “If I ever get cancer, I’ll be sure to let you know!” Well, that was brilliant. Because now I have cancer, and now you know. I never thought I was going to have to make good on that brilliant promise.

I am very grateful to our mutual friend Annie for sharing with me more about Jill’s life. A few months ago I even mustered the presence of mind to send her family a sympathy card – proof that it is never too late or the wrong time, or at least that’s what I believe. But there’s only so much strength that I have. I remember the last message that she sent me, and I do not have to look it up again: “I was at the theatre last night, and I thought that I saw you!”

Why Get a Second Opinion?

It’s basically the difference between being a grateful user of public services and being a consumer. This is the second opinion in Canada vs. the U.S.

When I was diagnosed with breast cancer, I learned that second opinions aren’t really done in Canada, or at least not if you have confidence in your doctor(s). First I was diagnosed by my excellent family doctor, then sent to the breast care center for biopsies and further diagnosis, then to an oncologist at the local cancer program for more specific diagnosis and treatment.

As I understand it, it was a matter of the luck of the draw that I was paired with a medical oncologist (MO) who was caring, conscientious, and well-versed in the latest treatments. After all, I saw a lot of doctors (family doctor, surgeon, interventional radiologist, radiation oncologist, pathologist, etc), but it is the medical oncologist who is mainly responsible for my care and who has seen me often enough to likely be sick of me and the plaid flannel dress that I have come to favor, especially in cold hospital rooms.

An American friend who was treated for cancer locally many years ago explained, “Second opinions are not really a thing here. People will get squirrelly if you ask for one.”

And yet, all the Americans wanted to know if I was going to get a second opinion, as if not getting one would be irresponsible. “I’m pretty sure that the second opinion is that I still have breast cancer,” I noted.

But the fact is that only about 6-10% of breast cancer patients have metastatic breast cancer at the time of diagnosis (de novo). Being diagnosed at age 44 puts me well below the median age for breast cancer patients, an age where cancers are more likely to be aggressive, but patients are more likely to respond well to treatment. I read through the treatment guidelines and noted that they are the same for women with breast cancer, regardless of what age they are diagnosed or whether or not their cancer is de novo or a recurrence. It seemed to me that these variables introduced some wiggle room into the question of how to treat me.

In addition, we got convincing email from our American friends noting that for many American oncologists, a second opinion is a standard practice and a sign of having made a thoughtful choice when you do sign on for treatment with your oncologist. The principle of leaving no stone unturned as you think through what kind of diagnostic testing and treatment makes sense for you makes sense, even in the Canadian single-payer sensibility.

So we went to Toronto and met with a MO who has treated hundreds of patients like me, and she did not have anything new to suggest. We went full steam ahead with the standard chemotherapy treatment and, lo and behold, I did have a great response, even what is called “a complete response,” meaning that my cancer was undetectable. Until it wasn’t anymore, and I found out that I needed brain surgery.

Fortunately, my MO was supportive of getting a second opinion, something that a friend has suggested as generational. Under insistence from my parents and path smoothed by one of their friends, I scheduled an appointment with the excellent breast cancer team at Dana-Farber Cancer Institute in Boston for right after my brain surgery last November.

To cut to the chase, how did I process this question of whether or not to get a second opinion? And why does no one seem to talk about it, at least in Canada. Here are some of my thoughts.

REASONS NOT TO GET A SECOND OPINION

  1. Treatment will be the same. If treatment for your condition is well-covered by clinical guidelines, then a second opinion will probably yield more of the same plans and decisions. The same is true for the diagnosis, if it is not likely to change or if the original testing is complete and thorough.
  2. Your case is going through a tumor board. Yes, it’s actually called that, when a lot of different doctors in a cancer centre get together and review your case. They talk through the ambiguities and everyone gets the benefits of multiple minds focused on the case. This is an example of how medicine can be a very collegial and collective enterprise, and of how you can have several different clinicians’ problem-solving applied to a problem without ever leaving home.

REASONS TO SEEK A SECOND OPINION

  1. Your doctor is a quack. Thankfully, none of my doctors have been quacks, and the world “quack” amuses me plenty. However, I think the specter of the quack hangs over any patient who wants a second opinion, whose doctor has to think, “Does this person think I am a quack?” while the patient is also thinking, “Does this doctor think that I think that s/he is a quack?”
  2. You are part of a fast-changing field. Knowledge about cancer is changing every day, and new clinical trials pop up every day. In many cases, those who seek a second opinion feel like they need to find out what the state of knowledge is elsewhere and whether their case would be seen differently there.
  3. Your case is somehow different or special. For me, I was diagnosed at age 44 for a cancer in which the median age is much older. Should the fact is that I am able to tolerate more aggressive treatment be factored in to my treatment plan? Should the extremely aggressive nature of my cancer?

Notice what is not on either of these lists is, “You have confidence in your doctor.” I assume that this is true either way, and I also assume that more than one good doctor might have different views on the same case.  I am assuming, in short, that the doctor is not a quack.

Vocabulary Lesson, Part 2

Building on my earlier Vocabulary Lesson post, I have some more advanced vocabulary here. It’s a little technical, but it helps to spread some knowledge around that better reflects the state of what cancer patients go through today.

Prognosis – this is the third rail of conversation with cancer patients. Conversationally, prognosis means what physicians predict what is going to happen to the patient, and when. However, physicians know that they are terrible at this, and good doctors will refuse to give prognoses all the time. I have heard a lot of cancer patients complaining that when (probably well-meaning) people ask about their prognosis, they feel like they are looking for the “expiration date” that must be stamped on them somewhere. You know, like the perfectly nice person I see in the grocery store who brightly says, “But your prognosis is good, right?” Or the hairstylist who says, after I explain why I lost all my hair, “But everything’s good now, right?” Or the other hairstylist … what is it with hairstylists?  Maybe I’ll write a whole other piece about this one, but the bottom line is that no one can predict what your prognosis is because surprise is always part of the picture. I can tell you what the median survival time is for patients with Stage IV breast cancer, but that won’t tell you much about my case.  I offer this as the only topic to be avoided with cancer patients.

First Line/Second Line Treatment – this was a new one to me, but it’s extremely important. The First Line Treatment in chemo is whatever your oncologist puts you on first, usually according to whatever the clinical guidelines tell him/her to do. When that appears to be not working anymore, because cancer finds a way around most treatments, s/he puts you on the second line treatment. In Ontario, the government funds two lines of treatment, so the decision to switch from one to the next takes on a lot of clinical significance.  If I’m reading the NCCN guidelines correctly, the largescale data says that there’s no additional benefit to treatment beyond 2 lines of therapy, so this is Ontario’s reasoning.  It also takes on emotional significance for the patient, who may be known to say things like, “I failed Ibrance after 8 months”! But never, “Ibrance failed me.” Discuss amongst yourselves.

Targeted Therapy – not all treatments are chemotherapy. Increasingly, cancer patients on targeted therapies that aim to interrupt specific traits in cancers, such as proteins or hormones, rather than attacking all cells, as chemotherapy (cytotoxic) drugs do. For example, for HER2-positive patients like me, who are between 15-20% of breast cancer patients, we are likely to get Herceptin and Perjeta, which are HER2-targeted drugs, at some point. These drugs are considered very good and have dramatically increased the prognosis of patients like me.

Second Opinion – this is also a funny one. A second opinion is when you go to another professional to find out how they see your case. I learned from experience that second opinions are often verboten in Canada because why would you imply that you weren’t already getting the best possible treatment in our amazing OHIP system? The tricky part is that I am American, and my family still resides in the U.S., where second opinions are basically required of everyone and if you don’t get one you might as well announce to anyone who will listen that you don’t care about your own health or the quality of your care. This is one of the many subtle differences between Canada and the U.S. that are very easy to overlook until you bump right up against them. Yeah, more on this one later, for sure.

Back in December, there was a lot riding on my laparoscopic surgery.  You see, I had this growth that was showing up in my pelvis, and no one could say for sure what it was unless we got a sample to the pathology lab. Was it cancer, showing that something new and dangerous was growing in my torso? Or was it just one of those things that grows in your pelvis? An attempt at an ultrasound-guided biopsy did not work out, but if it proved to be cancer, then we would have to move from a first-line treatment to a second-line treatment. So I had my ovaries removed — as one does — and learned that the growth was actually just regular benign fibroids, so I get to stay on my first-line targeted therapy, for now.  Woo-hoo.

What we read together

It’s not every evening, but as often as we can – maybe once a week and maybe several nights in a row – the four of us sit down together on our old beige couch to read a bedtime story. This usually happens around 7:30, when the kids are ready for bed.  The choosing of the stories is a pretty big deal, and once the novel is chosen, we all commit to it (to the extent that I have yet to complain much about the Rick Riordan one that we are currently making our way through). We read one or more chapter a night.

Our first family novel was probably The Mysterious Benedict Societ by Trenton Lee Stewart. At the time, I thought that The Prophet was too young to understand the novel — he used to need a small toy to fidget with during story time — but he would periodically pipe up to remind us of the key facts from previous chapters that we may have forgotten. I can’t count Charlotte’s Web as our first family story because it was only 3 of us reading, even if it did cause La Neige to become vegetarian for the rest of her life, and even if it was one of very few books that caused The Historian to cry when reading the last chapter.

Speaking of crying, my favorite book of storytime, perhaps of all time, is The Graveyard Book, by Neil Gaiman. It’s based on Rudyard Kipling’s The Jungle Book.  To those who have read the source material — that would be The Historian and La Neige — Gaiman’s version is a huge improvement. It’s about a boy whose family is murdered by The Man Jack, so he toddles into a nearby graveyard and is adopted by a family of ghosts. Over the years, he learns to turn himself invisible, yearns and fails to make friends with normal living kids his age, wards off demons, participates in a highly memorable danse macabre, and eventually walks away from the graveyard. The last few pages were so moving that we had to pass the book over to La Neige or we couldn’t have finished it.  Gaiman’s writing is extremely vivid without being showy, and he has a devastating eye for detail. I was not prepared for how much this book affected me.

At some point, it became clear that family story time was “our thing,” and I started collecting the books that we read on one shelf in our living room. I’m not quite sure of the order, since the presence of series’ will tend to mix everything up, but I think that we’ve read:

  • The Mysterious Benedict Society series by Trenton Lee Stewart
  • The Incorrigible Children of Ashton Place series by Mary Rose Wood
  • How to Train Your Dragon by Cressida Cowell
  • The Graveyard Book by Neil Gaiman
  • The Girl who Circumnavigated Fairyland in a Ship of her own Making and The Girll who Fell beneath Fairyland and Led the Revels There by Catherynne Valente
  • Watership Down by Richard Adams
  • Magnus Chase and the Gods of Asgard by Rick Riordan
  • and, of course, Harry Potter by J.K. Rowling

In the olden days, I think families gathered around to read together. It takes something that my nerdy family loves, which is READING, and makes it a social activity. We have giggled together at the antics of Lady Constance of Ashton Place; and we have debated around the dinner table the fitness of Stewart’s mind games or Harry’s character as the Chosen One. La Neige has decreed that since we started reading Harry Potter when both she and Harry were in First Year, we read one book a year. This means that we still have the last one to go. We may break with tradition and read two Harry Potter books in one year. This would demonstrate how extremely flexible and fair-minded we are.

For a while, The Historian and I would trade the reader role back and forth, but then I got too sick and tired and he did all the reading. Good thing he’s a great reader and has an excellent Hagrid-Scottish accent. I have been known to fall asleep during story time and had to go back and reread the end of Harry Potter and the Half-Blood Prince, but miraculously, the four of us still fit on our compact beige couch.

A Vocabulary Lesson, part 1

From the always-wise Susan Gubar:

For most people with cancer, life has conventional stages that I can sum up with acronyms: B.C. (before cancer), A.D. (at diagnosis), S.S.N. (some surgical nightmare), RATS (radiation therapies), ICH (in chemotherapy), followed by IRS (in a remission of some number).

Like a growing number of patients today, I inhabit a less familiar state: maintenance. This new phase presents a viable alternative to remission which, I sometimes feel, is not everything it is cracked up to be.

recent article in the New York Times chronicled quite vividly the author’s experience of trying to communicate with people about living with stage IV colon cancer. This article got a tremendous response from people, and it made me realize how lost we all are when it comes to talking about cancer, or about any chronic illness really. We live in a culture where it’s not okay to be ill in public, but at the same time we have this amazing growing ability to diagnose people as chronically ill when they might have previously looked “normal”. And we have a growing disabilities rights movement that is all about making sure that everyone is accommodated in public. So we have sick people walking around looking well, which probably isn’t a new thing at all, and no one knows what the right thing to say is.

The bottom line is that there is no right thing to say. The ability to let go of the need to say the right thing is a wonderful gift, I’ve discovered, as is my tolerance for awkwardness. I am so grateful for the many people who have braved being awkward or inappropriate when they did not have the ‘right thing’ to say was but did not let that stop them from reaching out to me or being with me or my family.  And, luckily, once I threw away any semblance of propriety I opened myself up to hearing what was on people’s minds. If you’re looking for a way to do this, it’s always helpful to acknowledge that some things are terrible, that you’re sorry that your friend is going through this, that you feel sad or anxious, etc.

In the spirit of helping, I put together a list of the some of the terms that are important to cancer patients but where we don’t seem to be working from a common definition.

Cancer – I gave myself an easy one to start with. Cancer is the growth of abnormal cells, mutated from the patient’s own cells. There are many – perhaps countless – types of cancers, so when I was diagnosed with breast cancer, I learned that it has both types and stages, which change how you might treat it. Everyone can have their own theory of what causes cancer, but it’s still pretty mysterious. For example, the majority of breast cancer patients, like me, do not have any ‘risk factors’ in their history such as smoking or having a family member with breast cancer.

Guidelines (also Medical Guidelines, Clinical Guidelines) – this is a really important one. During the past few decades, there has been a movement towards Evidence-Based Medicine (EBM) that analyzes published research in different fields to come out with guiding statements about how patients should be diagnosed and treated.  They are often pointed to as the “gold standard” in knowledge of a particular condition. In the case of cancer, my understanding is that doctors tend to follow the guidelines set out by the National Comprehensive Cancer Network. This means that there is something in writing that should conform to the empirical evidence of as many cases as possible. In my case, Ontario tends to adopt the recommendations of NCCN, resulting in top-quality care available to patients like me. The downside is that guidelines devolve from large-scale research, so they may not address key variables in your specific case (like, for example, the fact that I was diagnosed before the age of 45 with stage IV breast cancer). Also, guidelines lag behind the actual research, so in some cases guidelines may be behind the latest treatments for your particular case.

NED/NEAD/No Evidence of Active Disease – this is a key term for people with stage IV cancer because for most oncologists there is no ‘remission’ for us. Instead, the goal is to get to a state where medical science has beaten back any evidence of disease. For many patients this is Holy Grail of cancer treatment because NEAD status means that everything is working. But achieving NED status does not mean that cancer is gone, as Beth Caldwell wrote: Hope is like a rope that kind people who just don’t get what metster life is like will throw down to you and say, ‘Here, climb this.’ But the problem is, the higher you climb, the harder you fall. And you WILL fall. NED doesn’t mean cured. The cancer is still in there, trying to figure out how to overcome the drug I’m on and start growing again.

Stability – much like NED, this is seen as a good thing. When scans show that tumor(s) have not progressed, then a patient is regarded as being in a state of stability. For most oncologists, like mine, this is seen as a sign that treatments are successful because the cancer is in check.

Progression – this is when cancer is growing where it is or is detected in a new spot. This is generally seen as cause for different action because previous treatments were not totally working.  I’ve come to think of progression as being the thing that is around the next corner. You never know what it’s going to be. I never thought it would be brain tumors, but for me it was brain tumors.

Last fall, I went from a state of NED to progression very quickly when tumors were detected in my brain. Then I had successful surgery and radiation followed by a period of recovery, which is where I still am. Since the beginning of this year, I’m back on maintainance therapy, getting an infusion at the chemo clinic every 3 weeks because the guidelines say that that is the right thing to do. Apparently, there is this thing called the blood-brain barrier that means that drugs that are working from the neck down don’t work the same in your brain. Previously, researchers thought that the brain contained a barrier that keeps the chemo drugs out. Now, they’re not so sure why it is that the brain will grow tumors that they body won’t. The latest crop of cancer drugs have been controlling the growth of cancer well enough in the body that we are, apparently, seeing more and more brain tumors because these drugs just don’t work as well in the brain. When I was diagnosed with breast cancer I read that I had less than a 1-in-5 chance of brain tumors, now it’s looking more like 1-in-2.