Explaining Myeloproliferative Neoplasm Disease Progression to Patients

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Explaining Myeloproliferative Neoplasm Disease Progression to Patients from Patient Empowerment Network on Vimeo.

What is the best way to explain disease progression to myeloproliferative neoplasm patients? MPN experts Dr. Gabriela Hobbs and Natasha Johnson share advice on how they work with patients and families to clearly explain disease progression.

Dr. Gabriela Hobbs is a hematology-oncology physician specializing in the care of patients with myeloproliferative neoplasms (MPN), chronic myeloid leukemia, and leukemia. Dr. Hobbs serves as clinical director of the adult leukemia service at Massachusetts General Hospital and is an assistant professor at Harvard Medical School. 

Natasha Johnson, is an Advanced Oncology Nurse Practitioner at Moffitt Cancer Center, where she cares for people living with MPNs with kindness, patience, and humanity. Natasha also speaks at conferences to educate other healthcare professionals about MPN care, research, and treatment. 

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Transcript:

Nicole Rochester, MD:

I wanted to shift again and start to talk about specifically disease progression. And we know that that is, unfortunately, something that is an important element of MPNs. And so as we talk to fellow MPN specialists, what are you all’s recommendations for how they can best explain disease progression to patients? Are there any specific languaging or specific tactics that you all use, and even things that maybe you shouldn’t say as you are sharing information about disease progression? Either one of you, feel free to go first.

Gabriela Hobbs, MD:

So disease progression, I think is a really challenging topic, because on the one hand, I think it’s really important to educate patients. It’s really important for patients to know that that is a possibility, that it is something that can happen. It’s really challenging to have a patient that has lived with this disease for a long time, hardly even knows the name of that disease. Maybe they were seen elsewhere, etcetera, and then all of a sudden, something’s going wrong and they just weren’t prepared for that. But I feel like that really does need to be balanced by the fact that, thankfully, progression happens infrequently. And so you also…going back to what we were saying before, you want to help a patient to be able to live well with these diseases and not be defined by those diseases. And so one of the things that I try to do with patients is, especially during that initial visit, I spend some time explaining to them what the disease is, that it can progress to myelofibrosis, that it can progress to leukemia. But then I also try to reassure them as much as possible that this is an infrequent event, that the reason why we follow patients in-clinic is so that we can start to notice if there’s disease progression, that it usually happens gradually.

And then I try to say, “You have this information. We can’t necessarily change that at this moment, there are maybe some tools that we can use in the future, but try to put that information in a box in your brain, put the key, put it away, try not to think about that every day when you’re outside of here. Definitely okay to open that back up when you’re with me in the room. If you want to get those anxieties out, that’s fine, but let’s really try to make sure that that’s in the back and not at the forefront of our thoughts.” And kind of going back to one of the things we were discussing before about what the patient thinks is most important, what the clinician thinks is most important. If you ask patients what are they most concerned about with their MPN, oftentimes that response is, “Is my disease going to progress?” And so I think acknowledging that and talking about that is important, but then also reminding patients that over time, they need to, hopefully with your help, or maybe they need additional assistance with therapists or social workers, etcetera, let’s find a way to put that away so that it’s not really at the forefront of our thoughts every single day, because that also ends up being not productive.

Nicole Rochester, MD:

I love that approach, of providing the education, but also that balance that you talked about, Dr. Hobbs. I love the idea of putting it away, putting it in a box [chuckle] and locking it, and then opening it back up when you’re in the safety with your healthcare provider. That’s beautiful.

Do you have anything to add to that, Ms. Johnson? 

Natasha Johnson:

I completely agree. Your example there of putting it in the box, I’m going to use that in clinic. [laughter] I think it’s a great visual for patients. Because like you said, they’re very scared, and it can control them and take over, and we don’t want the disease to take over their life. Still live. Enjoy. 

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What Does the Future of Myeloproliferative Neoplasm Care Look Like?

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What Does the Future of Myeloproliferative Neoplasm Care Look Like? from Patient Empowerment Network on Vimeo.

What does the future of myeloproliferative neoplasm (MPN) care look like for patients? Expert Dr. Idoroenyi Amanam from City of Hope explains how MPN treatments have changed in recent decades, symptoms that are relieved with treatments, and how treatments of the future may help patients.

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Transcript:

Lisa Hatfield:

Dr. Amanam, what promising treatments are available for newly diagnosed MPN patients, and what questions should patients be asking? They come into your office scared to death and not even knowing what to ask. Do you have any suggestions for what those patients should be asking when they go in as a newly diagnosed patient?

Dr. Indoroenyi Amanam:

Right, right. Twenty years ago, we really didn’t have any therapies for most MPN patients, aside from performing phlebotomy and using non-specific therapies to try to help control their counts and therefore reduce their risk of clotting and stroke. We are getting to a point which is really exciting, where we actually are treating the underlying disease, meaning that the cells that are causing this cancer, we have been able to identify targets that will help eradicate those cells and, therefore, get rid of the cancer. And so we’re getting there. Unfortunately, we still are not there yet, and so when we look at the FDA-approved drugs in this space, really, they help control symptoms, they help control some of the associated complications with the disease, mainly when your spleen’s enlarged, and that potentially may affect your quality of life, mainly your nutritional status and your physical status, and so we do have drugs that are able to do that, that are FDA-approved right now.

I think in the next three to five years, we’re going to have drugs that are going to actually be able to treat the underlying disease before it gets to a point where you may need more aggressive therapy. Currently, the only defined curative therapy that we have, when I say defined, meaning that we have multiple studies that have shown that that’s the case, is bone marrow transplant. I’m a bone marrow transplanter, I do treat some of my MPN patients with bone marrow transplant to get rid of the underlying…those underlying cells that are driving this disease. But that’s a very intense therapy and it has its own associated complications. But we are…will be having other drugs that potentially we would be able to offer that are not as intense as bone marrow transplant.

And those include immunotherapy, other drugs that can target the signals that drive these cells to divide and multiply. Also there are within the bone marrow for patients that have myelofibrosis, which is one of the MPNs, we will be able to target the environment that allows for these cells to persist and grow. And so it’s exciting where we’re going, and I think the questions that as a patient that I would ask are, because of the fact that we only have few FDA-approved therapies, are there any clinical trials that are able to target the underlying disease as opposed to just treating the symptoms? I think that’s very important for the patients to ask, especially in this space now.

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How Is MPN Care Influenced by Technology (AI, CRISPR)?

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How Is MPN Care Influenced by Technology (AI, CRISPR)? from Patient Empowerment Network on Vimeo.

How do CRISPR and artificial intelligence (AI) influence MPN care? Watch as experts Dr. Joseph Sirintrapun and Dr. Jeanne Palmer share their perspectives on how CRISPR and AI can impact MPN patient care and explain situations where AI performs above and below healthcare professionals.

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Transcript:

Lisa Hatfield:

So in addition to the telemedicine technology, there are other types of technology that are influencing cancer care. Can you speak to some of those technologies? I know I’ve always been really interested in the CRISPR technology, which I don’t hear about as much anymore. Artificial intelligence, my oldest daughter is graduating from college this year. That’s what she’s studying. So can you touch on some of those technologies and how those are continuing to evolve also?

Dr. Sirintrapun:

Oh yeah, there’s a lot. So maybe as a disclaimer also, in addition to being an informaticist, I’m a pathologist. So it’s a great honor to speak in front of patients because many patients may not necessarily know whenever you get a diagnosis, there’s a pathologist who made the diagnosis on a glass slide through a lab test. So that’s my path as a pathologist. So a lot of my technology mindset is in terms of diagnostic. So how do you make the diagnosis better? And you mentioned about…well, I mean, we’ll start with CRISPR. CRISPR is not necessarily in the diagnostic front, but it’s a very exciting thing, especially for those tumors that have genetics. One of the simple genetics. You misplace one gene here, and all of a sudden it just alters the way one protein goes, and it leads to a disease, a cancer. And if you’re able to surgically or genetically microsurgery you can imagine the implications and the transformation for that.

We’re already looking at it with hereditary diseases like Huntington’s and some of the different blood disorders out there, which have like single genes or maybe a couple that you can just sort of pick out there. It’s still early. And that’s maybe the reason why you haven’t heard the technologies there that can do it. But how to deliver it, how to do the microsurgery. You can have the scalpel, but somebody has to hold the scalpel and how to do that in terms of what type of nanotechnology is out there, all these different things. But CRISPR is very exciting. I do expect over the next, definitely in the next couple of decades, you’ll see something, some brilliant application coming out of that.

Now you mentioned AI, that’s definitely down my wheelhouse because I implement a lot of…I see a lot of AI and I try to figure out different ways to implement the AI into healthcare. Because there’s tons of AI out there, but the idea is to basically use the right AI at the right time with the right person using it and for the right problem. And there’s a lot of rights in there and it sounds simple, but you have to keep in mind that in the AI world, we sort of separate AI into like general AI and narrow AI. General AI is kind of the, is what some people term the singularity. Like it knows everything. It can read your mind. You can switch the setting of whatever it is. It can write poetry in one setting, play the piano in another. There really is no such thing.

So if you hear ChatGPT, if you ask it to play the piano, it’s not quite applied for that. It’s really for language. And I try to illustrate that point because that…all these AI currently that’s out there is still in a narrow AI. It doesn’t do what a person does. As people, we can switch. We can task switch. We may not beat the robot, but we can certainly task, if the setting changes, we can adjust. And that’s the power with our intelligence. We’re generalized. While most AI is narrow, but very good. They can be…obviously, when IBM Watson beat everybody at Jeopardy, and now you hear ChatGPT beat people in passing the boards. So a lot of med students are going, oh my gosh. Keep in mind that it’s narrow. I mean, this is what the robot is really good at. They’re very good at facts. They’re good at other things. And you can use that. You can, but they’re not going to be able to task switch.

And they’re not going to be able to know when they need to deploy the right situation. Remember, they’re narrow. So they’re not going to know when you change a situation. It’s not going to know when to switch. That’s the job of a physician, maybe the patient. And it’s my job as kind of the engineer or an informaticist to figure out when those come in. When should it trigger at the right time? When to make sure that people don’t misuse it at the wrong time and deploy the right problem to the right AI. And so, for instance, as a pathologist, one of the big hottest things that we have right now is prostate biopsy. I deal with male cancer. So I deal a lot with prostate. But the AI is pretty good at actually even, I would argue, probably getting better at catching cancer in a small prostate biopsy than humans are. There’s small things that maybe, for whatever reason, human factors being tired, the AI can actually catch it quicker.

It might overflag. It might catch things that are not necessarily cancer. But it will catch it. It will catch it. And it can be very helpful. Because you can imagine as humans tire, they can use that to screen. It may not be perfect at diagnosing, but it can screen. And at least it won’t miss anything. And then the human, the pathologist who comes in, can go and say, I can confirm that that’s cancer or not. So you save a lot of mental power, mental energy in terms of things. And this is an application of AI helping providers, and I can see in the future even patients sort of answer questions that would have been very laborious, tedious. This goes back to the automation theme that we had earlier. How do we make things easier? How do we decrease the friction? I sort of illustrated a case where they had friction points and tiredness and things like that. And so these are things that are on the horizon.

And I think we’ll learn a lot in the next decade or so. You’ll see a lot pop up. You’ll probably see some mistakes too, people overusing it or being in the wrong situation. But that’s the way medicine works. Medicine works through some trial and error. You make your best guess. You have experts. But in the end, there’s a lot of unforeseen things. But you learn a lot along the way. And you learn when to use it. And eventually, you reach this equally important point where everything works very well. It’s part of the workflow. It’s just part of…you just expect it. It’s just when you go to care, you just expect that there is a human overseeing some AI that’s making sure that you’ve got the right diagnosis that nothing’s left out, nothing’s omitted, and you can trust it. That’s kind of the place you eventually end up being.

Lisa Hatfield:

Well, and you hit right on something that I think a lot of people worry about is how can we trust AI and all of the ethics surrounding that? Can we really trust AI? As a patient, I’m fascinated by that. And I know that the Cancer Moonshot Program has directed some funds to AI and cancer research. I look forward to the day when there’s a bridging of that gap between research and then clinical practice with humans involved in a lot of the decision-making along the way also. I’m not sure that we can ever move away from that. But that was a great overview of technology. I hope it continues to evolve. I hope what I’ve seen, what you talked about, you work more in solid tumors. I have a hematologic cancer myself. But I do see that there is some AI being used in earlier screening and also in the identifying of different genetic mutations within those cancers. So I look forward to that continuing to evolve.  

Dr. Sirintrapun:

That reminds me, too, and I left that part out. Some of these technologies… I’m sorry I left that out, but genomics has become a big thing over the last decade because of the Cancer Genome Atlas and other things that actually allowed us to map the genome. But along that front, we have technologies that can monitor progression. So we can at the cellular level. If you’re actually circulating cell-free DNA as a technology that’s out there. Where if you can implement it correctly, you can actually follow the patients just through blood without anything invasive. And it’s much better than any imaging study out there. So there are technologies that are evolving on this. And because of all the progress we’ve made over the last 10 years, you can see that being incorporated in a clinical trial where you can monitor patients much better. You can intervene faster and more effectively and all those other things like that. And thanks for reminding me about that. I forgot to mention cell-free DNA is another one that I’m very excited about, still early. 

Lisa Hatfield:

Yeah. Well, thanks for that information. Dr. Palmer, do you have anything to add to this informatics description or discussion?

Dr. Palmer:

Well, I think there’s a couple of things about the technology component of it. I know it was several years back, CRISPR, when it first came about. It’s a brilliant technology. Everyone got very excited. Okay, if you look at a lot of the myeloproliferative neoplasms, there’s three driver mutations that are really felt to contribute strongly to the development and the ongoing nature of the disease. Everyone said, oh, I can go in and if you take out that gene and replace it with the new one, I can fix it. I think that where the role of CRISPR right now is, is it’s doing amazing things to help us understand the biology of the disease.

I think in terms of treating a lot of the malignancies, they’re so genetically complex that even though we say, okay, well, you have, for example, a JAK2-positive essential thrombocythemia, which is JAK2 is one of the driver mutations and essential thrombocythemia is too many platelets. Unfortunately, I probably can’t go in there and get all the JAK2 mutations in the blood system to replace them. Now, where it is making huge strides is in things like sickle cell disease and thalassemia, where there is one gene that is a problem. And even if you only replace it in 50 percent of the cells, you can really drastically change somebody’s life. So I think that it is used in certain situations and is absolutely astounding and amazing. I think it’s utility and completely eradicating cancer is going to be something that is going to take a long time to come about. But I do acknowledge that it’s making enormous strides in understanding how everything can work, because you can quickly remove something, replace it with something else, and really understand what the function of that mutation or that gene happens to be. In terms of the artificial intelligence, I’m looking forward to seeing how it can be used.

I think it’s right. You try to find, how can I come up with the right answer? And once you think, oh, this should be easy, I should be able to look at somebody’s blood counts over the course of a year and be able to predict something. But to actually be able to do that, I think, is going to take a lot more thought. So it is something that I’m hopeful that we can all start to utilize more. I think the last thing is, is some of these really fancy ways of detecting minute amounts of diseases. I think circulating DNA, which I frankly don’t know a lot about, because I don’t treat a lot of solid tumors. But also, when I look at just bone marrow disorders, like acute leukemias, we often look for something called minimal residual disease, which is this below the microscopic level. You’re looking at like one cell out of 0.001% of the cells.

And honestly, we don’t really know how to deal with that. And I think sometimes it ends up providing more anxiety, because you have otherwise a disease that you would say, under all historical purposes, you’re in remission, this is great. And then you have this little amount of disease. And sometimes it’s good, because it can help us determine the next steps of therapy in a more effective way. But sometimes it just creates stress, and we don’t truly know the actual meaning of it.

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How Will Telemedicine Continue to Evolve?

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How Will Telemedicine Continue to Evolve? from Patient Empowerment Network on Vimeo.

How will the use of telemedicine continue to evolve? Watch as expert  Dr. Joseph Sirintrapun explains telemedicine benefits and expansion during the COViD-19 public health emergency and the potential for telemedicine evolution in the future.

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Transcript:

Lisa Hatfield:

Can you give a brief overview from your perspective, how telemedicine has evolved and continues to evolve and how you think it might evolve going forward? 

Dr. Sirintrapun:

Yeah, I think I like pulling out these old sayings and I think Winston Churchill was credited with it even though I don’t think he said it, but never let a good crisis go to waste. You probably heard that during COVID, and COVID really blew open the door for telemedicine. I think because we just had to, there was no choice behind that. And thankfully, people…organizations, people recognized it. And I remember in March, March 2020, the public health emergency was declared and a lot of different things that were barriers and a lot of them were regulatory. They were opened up so that it can enable reimbursements, all these different things that factor in. And being able to leverage the technologies, because keep in mind with providers, I knew providers that didn’t know how to use Zoom and other technologies. And because of COVID, they were forced, and they found out, “Hey, it’s not that bad.” But if I were to do that before the pandemic, they’d be like, “Well, why should I? We’ll just show up in this conference room. We’ll just be there at six o’clock in the morning.

So it opens people’s minds. And I think that really helped. I don’t think that Genie’s going back into the bottle, not at least completely. I think we’re going to figure different ways to leverage those technologies moving forward. So in terms of telemedicine moving forward, some of the things I’d like to see and hence I think this is maybe one of the reasons why I’m here, is like how do we enable clinical trials to embrace the telemedicine model? Because clinical trials till now historically has been kind of a physical model. You have to go to some ivory tower, some centralized place and that really limits down, the patients can do it. There’s access problems. Even if you had the richest study in the world, you had to fly people from all over the world. You can imagine that just drains the budget. There’s just all these different things there. And when you think of the way clinical trials are conducted, it didn’t really take into account telemedicine visits.

At my institution Memorial Sloan Kettering, we developed an entire ecosystem of telemedicine tools to actually try to encompass the patient experience as close as we could. Because the experience, it can never be completely duplicated, but you can do certain things definitely through telemedicine. We tried to do our best to do it so it’s easier for patients, the nurse coordinators as well as the providers to use that. And clinical trials, they’re moving towards it. They’re acknowledging the issue and they’re rethinking the ways to do it. How can we enable it so that we can decrease the chasm between the patient and being able to enroll in a clinical trial? So in a nutshell, that’s the way things are going. We’re not there yet, but we’re definitely thinking about it. It’s definitely a discussion. I think the future will see a much more clinically- and a telemedicine-enabled clinical trial framework.

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What Does Informatics Mean for Cancer Care?

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What Does Informatics Mean for Cancer Care? from Patient Empowerment Network on Vimeo. 

What kind of impact can informatics have on cancer care? Watch as expert Dr. Joseph Sirintrapun explains the components of informatics and the benefits they provide in care of cancer patients.

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Transcript:

Lisa Hatfield:

So, Dr. Sirintrapun, as far as informatics goes, can you give us the layperson or a patient-friendly version of what informatics is and what it means for cancer care?

Dr. Sirintrapun:

I really appreciate Dr. Palmer giving the segue for the informatic system. So this is…let me start with maybe when I explain to colleagues and other people about what informatics is. When you think of informatics, you think of three pillars, and we always…I almost have it down like a parrot. So it’s people, processes, and technology. And people always think it’s the technology, but it’s also people and processes, and that’s always been…whenever you see informatics, that’s the three pillars, but I wanted to add one more that Dr. Palmer also mentioned is data and information. You incorporate all those, so imagine all the four pillars coming together to enable the practice of medicine care and at a very high level, what I like to think of informatics is, it’s the science of bridging the gap, decreasing the chasm between the right caregiver to the patient who needs it. Because there are chasms everywhere, in terms of logistics, space, physicality, you have to travel five states to get with a rare tumor.

Those are chasms there. And I see informatics as bringing all those different pillars together. How do we do it so that the chasm is decreased? Or if it’s not a chasm, decreasing the friction, decreasing the burden between making these things work, making things more efficient. So I think I was hearing a little bit earlier about how can we automate things? As Dr. Palmer mentioned before, data, data abstraction data, being able to pull data from these gigantic enormous resources, it’s tough. And it’s not like we can hire the entire high school student population on their summer internship to go and read through these notes. And there’s not enough money, there’s not enough knowledge. And we need to find different ways that we can use automation, AI, or other things like that to do it.

And this is where informatics kind of delves in. How do we apply all these different things so that people can use it, because you never can forget about people. It works in the processes that take place and it’s the right technology. Because sometimes technology, it’s a great technology, but it’s not ready for certain things. I see a lot of technology kind of ahead of its time. It’s basically a tool in search of a problem and people try to stick it somewhere where it doesn’t fit. So it’s a lot of that. And as you can tell, I’m pretty excited about it because that in a nutshell gives you a feel of what informatics is all about, so.

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What Healthcare Trends Are Observed in MPNs?

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What Healthcare Trends Are Observed in MPNs? from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Jeff and Summer share trends they’ve observed since Summer’s initial diagnosis of myelofibrosis a few years ago. They share recent studies they’ve viewed and are following. Jeff gives a charge to viewers to be your own empowered patient and keep up with research when you can. “Be your own advocate.”

Videos Featuring Jeff and Summer:

Roles Reversed: Taking Care of Your Care Partner

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Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

And I’m Summer.

Jeff:

And we’re your Network Managers (Editor’s Note: Now referred to as Empowerment Leads) for Myeloproliferative Neoplasms for the Patient Empowerment Network. And, we’re here today to talk to you about healthcare trends in MPN medicine, basically.

Summer:

I was diagnosed with myelofibrosis over three years ago. And at the time, they could only offer me one medication, Jakafi (ruxolitinib), which for me work but doesn’t work for everybody. So, I’ve had good luck with it and I haven’t really had any other symptoms.

Jeff:

But this is an exciting time in the MPN medicine because since that time, there have been two more medications released to control myelofibrosis. One called fedratinib. And just last month, pacritinib was released and approved by the FDA. So now there are three medications that can be used to treat the symptoms of myelofibrosis.

There are currently no medications that can cure a person of myelofibrosis. The only cure, currently, is a stem-cell transplant. But some exciting developments are happening that may even be able to cure it.

I just read an article that some scientists have found that the medication used in breast care – breast cancer treatment causes remission in bone marrow fibrosis in mice. So they’re working along the way to see if that will be effective in humans, eventually. And that might be, potentially, a cure for myelofibrosis. Those are exciting trends in the MPN research and medicine world.

Summer has other information that’s useful though.

Summer:

Yeah, that’s really exciting about the new medication. I was looking up what the Mayo Clinical has to say and being happy and having a good attitude really enhances the immune system. There is a chemical that you get that comes from being happy that really, really keeps the disease from being more serious.

So anyway, that’s what I believe in because I’m an actor and so I don’t get into the medical thing, but I know Jeff is brilliant for it. So, that’s exciting all along having a good attitude and the new developments in medication.

Jeff:

So, keep those in mind, consult with your healthcare provider, and you need to be your own empowered patient and keep up with the research by yourself. It’s all available online, no problems at all, just Google it and you’ll be able to keep up yourself. You have to be your own advocate.

Until next time, I’m Jeff.

Summer:

I’m Summer and, wait a minute, this is our little baby, Zelda.

Five Tips to Participate in MPN Care and Treatment Decisions

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How can myeloproliferative neoplasm (MPN) patients become more active in their care? In the “How Should You Participate in MPN Care and Treatment Decisions?” program, expert Dr. Abdulraheem Yacoub of the University of Kansas Cancer Center shares five key tips MPN patients can take for a more active role for optimal health outcomes.

1. Become a Patient Self-Advocate

It’s vital to have the ability to advocate on your own behalf no matter your age at diagnosis. And some MPN patients will be diagnosed at a relatively young age and will have different MPN care providers over the course of their disease. These patients need to get accustomed with the idea of care approaches changing over time.

2. Get Involved and Build Your Village

Being involved in your well-being as a patient is of utmost importance, and thinking about your support network is recommended as one of your early steps as a patient. Think about who among your friends, family, co-workers, and spiritual community might be able to help support you – and ask your MPN care provider about support resources if you need some additional help.

3. Bring a Friend or Loved One to Appointments

It’s important to have someone else at your appointments with you to help understand the information you receive and to also take notes and to ask questions if it’s helpful for you. Having a second set of ears is especially important with your early visits about treatment options, and the use of telemedicine makes it easier for loved ones to help support your appointments.

4. Get a Second Opinion

Second opinions are no longer the taboo that they were once perceived as. Listen to medical facts given to you from your MPN specialist and from your primary treating physician. And if you want a second opinion from another MPN specialist, this practice is easier to carry out now through telemedicine.

5. Seek Out Credible Resources and Research News

Keep yourself informed about the latest MPN research and treatment news by visiting credible online resources. In addition to PEN, check The Leukemia & Lymphoma Society (LLS) and MPN Research Foundation. The annual meetings of expert conferences like the American Society of Hematology (ASH) and American Society of Clinical Oncology (ASCO) bring research updates for MPN online resources to cover.

By taking a more active role in their care, MPN patients can help determine the best care and treatment plan for optimal health outcomes.

MPN Patient Profile: Robyn Rourick Part 2

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Read the first part of Robyn’s MPN journey here…

Picking up after 26 years of watchful monitoring of her myeloproliferative neoplasm (MPN), scientist Robyn Rourick was then referred for an allogeneic stem cell transplant by her MPN specialist, Dr. Gotlib. The transplant team started working through the matching process for a bone marrow transplant donor, which often begins with close biological relatives. Although Robyn’s only sibling wasn’t a transplant match, a person considered a near perfect transplant match for Robyn was found.

At that point in her journey, the possibility of entering a Phase II clinical trial called ORCA-1 was presented by Robyn’s transplant doctor. She discovered that the ORCA-1 treatment had the potential to completely eliminate graft-versus-host disease (GVHD). The clinical trial made sense to her. In Robyn’s trained scientific mind, she agreed that the trial was founded on sound scientific rationale with the potential for clear benefit and signed up for it. She researched other things like whether the transplant team could look at biomarkers to guard against graft-versus-host disease, but she decided to take the clinical trial path as her best option.

As for her feelings about the stem cell transplant, Robyn felt there was likely going to be a positive outcome for her due to the ORCA-1 clinical trial. Her knowledge about the trial really brought her a lot of comfort and put her at ease for the time she’d be around her family post-transplant. Robyn was lucky because her doctor was actually the primary investigator on the study. When he presented the transplant study as an option, that’s when she started to do more searching to find what patient advocacy groups were out there.

Looking back on her MPN journey, Robyn wishes that physicians would provide their patients with more patient advocacy resources, such as those available through organizations like Patient Empowerment Network (PEN). She feels fortunate that she discovered PEN through another patient advocacy website, and she firmly believes in PEN’s mission of empowering patients to gain knowledge to advocate on their own behalf. “I had the realization that in the clinical trial I was in, I was only the sixth patient, and the technology was stellar in terms of what we’re trying to do in terms of cell therapy. I just felt like patients need to know about the treatment advancements, and PEN is an excellent resource for learning about treatment and support options that I wanted to share my knowledge and patient experience with.” 

Robyn was fortunate to have a team of physicians in whose knowledge and treatment recommendations she could trust. She’s  tremendously grateful, because she knows it’s not always the case, and so offers this advice for others, “Make sure that you’re comfortable with your physicians. And if not, then move on. Don’t be afraid to reach out and to make other connections to other doctors, even across the globe. You shouldn’t hesitate to request a conference call with another provider to see if they’re aligned with your diagnosis and your watchful waiting or treatment recommendations. Patients must have the utmost confidence going through their cancer journey.”

As for the scientists who handled her sample in the ORCA-1 trial, Robyn was able to meet the scientists and saw the analytical data of her sample. She was highly impressed with the protocols that they used with the samples. Robyn was just the sixth myelofibrosis patient to join the trial. To have spent her life working on medicines for patients and then to be on the receiving end of this cutting-edge treatment for transplants made her feel very privileged. 

In her life post-transplant, Robyn has continued periodic blood work for routine monitoring and has been doing well. Two years following her transplant, Robyn’s myelofibrosis is in remission, and she has no evidence of fibrosis in her bone marrow. Her test numbers have been progressing nicely, and she hasn’t needed any additional treatment since undergoing the transplant. “I don’t have a single regret. I haven’t had a pimple, an itch, a scratch, absolutely nothing. My life has resumed exactly how it was before the transplant.”

In reflecting on her patient experience, Robyn offers this additional advice to other cancer patients, “Take a deep breath and give it some time to play out. The moment that I heard the word cancer and the risks with rapid progression, I had myself dead and buried. In my mind, what I needed to plan for was death. Prepare my family. Get everything in order. And to me, that was going to be the ultimate outcome. But then as things unfolded, I had conversations, did a little bit of research, and found out I did have some options. Things weren’t so negative in terms of progression and mortality. Don’t jump to the most negative outcome possible.”

MPN Patient Profile: Robyn Rourick Part 1

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Though Robyn Rourick is a scientist by training and works for a biotechnology company, she took a mind-body approach to her myeloproliferative neoplasm (MPN) journey. The time that passed between Robyn’s initial MPN diagnosis and when she finally needed treatment was incredibly – and nearly shockingly – long. She was diagnosed with essential thrombocythemia (ET) 26 years after elevated platelets were shown on a routine blood test. After she saw a hematologist, they performed a bone marrow biopsy and concluded she didn’t have myelofibrosis and received the ET diagnosis. Robyn recalls of the time of her diagnosis, “I didn’t know about myeloproliferative disorders. Not many people did at the time. Nobody mentioned that I could potentially have an MPN.” 

Robyn’s blood levels were monitored over the years, and her platelets started to decrease. Though she didn’t realize at the time, her platelets were decreasing because her bone marrow was becoming more fibrotic. She was also tested for the early gene mutations (JAK2) that were discovered as more MPN research occurred but tested negative . She later switched to another hematologist who was very tuned into the gene connections. He looked at Robyn’s medical data comprehensively and was extremely attentive to any minor changes. As her blastocytes began shifting, he urged her to go see MPN specialist Dr. Gotlib. Dr. Gotlib did further analyses and classified her as having myelofibrosis, noting that when she was diagnosed with ET that her original healthcare team also couldn’t have  ruled out pre-fibrotic myelofibrosis at that time. Fortunately, Dr. Gotlib stated if he had diagnosed her with her original blood test 26 years prior, he would have recommended to simply watch and wait while monitoring Robyn’s blood levels on a regular basis. 

Although Robyn felt healthy and had no symptoms besides an enlarged spleen, as Dr. Gotlib dug deeper into her genetic profile, he found a unique mutation that suggested she was at risk for an escalation into acute myeloid leukemia mutation. He recommended Robyn for an immediate allogeneic stem cell transplant for her MPN treatment.    

Robyn then learned that graft-versus-host disease (GVHD) was a major concern for the transplant process, which can be debilitating. So she began to seek patient advocacy resources to inform her MPN journey. “I felt desperate and wanted to meet people who had myelofibrosis who successfully came through transplant. I didn’t want to just talk to a transplant person with a different disease.” Robyn went through some patient connection programs – including Be the Match, Caring Connections Program, and Patient Power – and was able to meet a few people and became quite close with one patient. 

She learned that even though transplant will cure your disease, doctors don’t always elaborate with patients on the potential for a compromised lifestyle due to  graft-versus-host disease. Sometimes patients will come through transplant in worse condition than before the treatment. Robyn had major fears about going through transplant and being able to work and do her extracurricular activities post-transplant. “I felt like I was going to be a letdown for my family and colleagues and didn’t tell my work until I was preparing to go out on leave, which in retrospect was silly.” After telling her manager, Robyn was given complete support, and realized she could have avoided carrying so much anxiety.

“For me, self-education and advocacy are important to enable yourself to have conversations about what’s possible in terms of your treatment. You don’t have to develop an in-depth understanding, but enough to have the ability to be conversational. If you’re proposed a certain pathway, it’s good to know enough to ask why. And if you’ve done some research on your own, then you can ask why not an alternate treatment approach. I think it’s really important to have some knowledge, because it builds your confidence to be able to move forward with what’s being proposed.” 

“Give it time, allow yourself to digest the information, have conversations about it, and develop your own understanding. At first, I was very closed about my diagnosis. I told my immediate family, and I told one very close friend who had gone through autologous transplant. The more that I began to talk about it and the more that I included people in the story, the easier my journey became.” Robyn also saw a cancer therapist who made some really good points to her. “She told me that ‘we’re all going to die of something, but most of us don’t know what that really looks like.’” In Robyn’s case, she had the opportunity to learn more about her disease, guide it, and direct her journey. And that opened up a whole new perspective.

The cancer therapist walked Robyn through some exercises: “What is it you’re afraid of? What do you have control over? Allowing yourself to gain control over some things will build your confidence that you can do this.” Robyn also encourages other patients to engage their network of friends and family and realize that it’s okay to depend on people. It’s not your fault that you have this diagnosis. Getting over the apprehension of telling people about your diagnosis and embracing help from others are key pieces of advice.

Robyn views patient empowerment as essential to the patient journey. She discovered Patient Empowerment Network (PEN) through another patient advocacy website and felt it brought her MPN patient experience full circle in terms of learning what’s available. “As I’m learning more about PEN, I’m just dazzled by the different forums they have to enable knowledge transfer, support systems, and advocacy.” 

Read the second part of Robyn’s MPN journey here…

COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know?

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COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know? from Patient Empowerment Network on Vimeo.

 Should myelofibrosis patients get the COVID-19 vaccine? Dr. Joseph Scandura discusses the risks and benefits of vaccination.

Dr. Joseph Scandura is Associate Professor of Medicine and Scientific Director of the Silver MPN Center at Weill Cornell Medicine. Learn more about Dr. Scandura, here.

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Transcript

Katherine Banwell:

Is the COVID-19 vaccine safe for patients with myelofibrosis, and how does the vaccine affect treatment? 

Dr. Scandura:

So, I will flip that question around a little bit. I live in New York City.  

If I cross the street, the decision to cross the street is potentially a life-or-death decision. And whatever minor decision you’re making, there are always risks and there are always potential benefits. So, I might get home, I might get run over by a cab. And so, I try to mitigate those risks as I can by crossing in certain streets, looking both ways. So, when we talk about vaccine, we also have to talk about the other part of it. What is the risk of not being vaccinated? And so, we know COVID-19 is a severe illness in a subset of patients, we know that if you take all people, about 1 percent of people die from COVID. 

 If we take all people from the vaccine who have been vaccinated, the number of serious side effects is very, very, very, very small, so, like .000, you know, something percent. 

So, very low. It doesn’t mean it’s zero, but it’s very, very low. So, just looking at those numbers, I say for virtually everybody, the risk/benefit is in favor of vaccination. In patients with myelofibrosis, we’ve had the opportunity collectively across the world to gather experience and look at patients with myeloproliferative neoplasms and how they responded to COVID when they were infected with COVID. And worldwide, the toxicity of COVID in patients seems to be quite high. And so, patients with myelofibrosis may be at higher risk from COVID. 

I can’t say that they absolutely are because this is imperfect data, but that’s the experience that has been published so far.  

We really don’t know anything about the experience of patients to the vaccine. Actually, at my center, we have a myeloproliferative diseases center, and we are trying to collect that information because patients often ask, and I don’t have any results from that. But I think that, all told, there is no reason to expect higher symptoms in patients with myelofibrosis from vaccination. And what we do know is that the risk of not being vaccinated is probably higher than the risk of being vaccinated.   

An MPN Care Partner Shares Why He’s Optimistic About the Future

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An MPN Care Partner Shares Why He’s Optimistic About the Future from Patient Empowerment Network on Vimeo.

Care partner Jeff Bushnell, husband of myelofibrosis (MF) patient advocate Summer Golden, explains why he’s hopeful about their future together. Jeff shares key resources that have helped him stay educated and maintain optimism.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

See More From the The Path to MPN Empowerment

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A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis

Transcript:

Jeff:

It’s important to educate yourself because the more you know the less fear can overcome you. And this particular disease – the research is happening so fast, and things are changing. In my estimation, they’ll find – right now, the only cure is a stem cell transplant. It’s normally not done for older people. That in itself is innately risky. I’m convinced, probably within the next five to seven years, there will be a cure for this disease that’s not a stem cell transplant.

The research is moving that quickly on it. And if you don’t follow the disease and the people that are working on it, the specialists, you’re gonna have a much greater chance of feeling powerless and getting overwhelmed by it. As Summer believes, attitude can have a huge, huge impact on how the course of your disease runs. And a doctor would tell you the same thing.

For me, it started with Patient Power. Patientpower.info, I believe is, what it is. They have a whole section for myeloproliferative neoplasms and myelofibrosis, and they’re short videos. And you get a chance to listen to the best doctors that are the head people in this, Dr. Mesa, Dr. V [Verstovsek], and Dr. Jamieson – all the people that are really the movers and shakers. They speak. And you also get a chance to hear other patient’s stories and how they’re dealing with it. And that will give you a much better idea of what you’re facing. And you can really understand things from there. And you can get your knowledge.

Fear comes from lack of knowledge. In my job as a pilot, I flew for 50 years. I very, very rarely was afraid because my knowledge was so great and was reinforced every year by continual training that I felt prepared to handle anything that might come across to me. Knowledge is really important. It will allay your fears dramatically.

When I started online and heard about people that had been journeying with this for 10 or 15 years, initially, I had thought – well, this is a year or two, and it’ll be the end. And then I realized, plenty of people have lived with this for a long, long time. And they had a journey, and they’re doing it successfully. And that gave me confidence.

The more people you can talk to about it, the more you can put your journey in perspective. And it’s really hard to put in perspective for this particular disease because it affects everybody vastly differently. Some cancers – the progression is very, very linear. Everybody kind of goes through the same thing. This one – it depends on the mutations you have in your blood and all kinds of things like that, and some people get really bad symptoms quickly.

Others, they don’t. But the more you know about how those things affect you, the more you know and can understand about what to expect. And the more people you talk to who have it, you can find out about their journeys. It helps put yours in perspective.

I’m optimistic because I really keep up to date on what’s going on. And I see the doctors that are in the forefront of this and the research that they’re putting in and the care they have for working on this disease and the knowledge they have, and I just am quite optimistic. And as I say, I’m following the medical developments extremely closely.

I went to the ASH Conference last year. And I’ve gone to another conference that our doctor spoke at. And I’m just kinda blown away by – I’m fascinated by the science.

My advice would be find out as much as you can about it and support each other in a way that works in your own marriage.

Summer and I approach life a little bit differently. And yet, one of the reasons we do so well together is we kinda have both ends of the spectrum covered. And I sensed that when I met her 20 years ago. And we brought something to the table that each of us needed. And if you can find that in your relationship with your significant other that has the disease, what you can bring to it, what they can bring to it, you can be a tremendous support for each other.

A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis

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A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis from Patient Empowerment Network on Vimeo.

Care partner Jeff Bushnell shares how he and his wife, patient advocate Summer Golden, have dealt with her myelofibrosis (MF) diagnosis. Jeff explains how online support and finding an MPN specialist were essential steps in helping them continue to live life to the fullest.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

 

See More From the The Path to MPN Empowerment

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Transcript:

Jeff:

The worst part was initially. We didn’t get a myelofibrosis diagnosis.

It took about a month because in order to definitively diagnose it they have to take a bone marrow sample and send it to a pathologist and so on and so forth. So, all that time, I’m worrying about the possibilities. It could be leukemia or this, that, or the other thing. My way of handling and dealing with scariness – I’m a retired pilot – is to find out things, knowledge.

I spent a huge amount of time on the internet. The LLS Society has papers about it, and I read those.

And the more I got into it – once we found out it was myelofibrosis, I’ve read almost all of the papers that the doctors write for each other to find about this. That doesn’t interest Summer in the slightest. It interests me greatly. So, when we have an appointment with the doctor – when I’m talking to the doctor, it’s like two doctors talking to each other.

When Summer’s talking to her, they talk on a different plane. It’s much more about mental approach to things and that kind of thing.

And for me, when I think back to the beginning of when we had this and where we are now two years later, we’re living the life that we lived before she was diagnosed to be real honest with you.

We do everything that we did before she was diagnosed the same way we did it before, and it was a trip that probably everybody who gets diagnosed or deals with a person that has the disease takes. When it first happened, it hit us like bricks coming out of the sky hitting us on the face. Literally, when we first went to the hospital and she got the word that there was a problem – as I say, we lived in two separate houses – I literally was afraid to call her phone figuring she might be not there. I was that scared. And then, after we met our doctor, which was extremely fortuitous – when we went to the emergency room, the person that was there, she said these look like leukemia things.

So, she called the oncologist. The oncologist on call is our current doctor, Dr. Tiffany Tanaka, and she’s a specialist in this disease. It was like it was meant to be. And Dr. Tanaka asked the guy to do some other tests and then said, “Send her home, but tell her I need to see her this week.” So, we’re thinking all these horrible things. And its New Year’s weekend, so the clinic is closed for about five days, you know? We’re worrying and worrying and worrying.

We finally saw Dr. Tanaka, and it was like a breath of fresh air. This wonderful doctor has the ability to just communicate with the patients. I’m interested in the disease, so she communicated on my level. Summer is not interested in all the medical jargon, so she was able to explain to Summer what was going on and just very, very reassuring, very reassuring.

And then, I went and started getting information. That’s my way of coping with things. The first place I went was – I went to Patient Power and found a lot of information there.

And then I found the online myelofibrosis support group at Facebook. And that was very, very useful. When I started reading about the fact that some people had this for many, many years – then I said this is not – nothing’s gonna happen in the next year or two. We can go back to living. And once we learned more about it and spent more time with our doctor and Summer was able to live her life once she got taking the medicine – she takes Jakafi.

That controlled the basic symptoms, and we haven’t looked back. We just started living our life the way we had been living it before.

Words Matter: Why Cancer Isn’t a Game of Winners or Losers

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Are you “battling” cancer? Do you know someone who has “lost their fight” with the disease and died?

It seems whenever we hear a story about someone with cancer, war metaphors are never far behind. Cancer battles must invariably be bravely fought, won, or lost. Using this metaphor implies that if a patient fights hard enough and/or long enough, he or she will be able to “win the war.” The trouble with using this particular kind of metaphor to describe cancer is it puts the burden of healing on patients by turning them into winners and losers. As breast cancer blogger, Nancy Stordahl, writes in What Does Beating Cancer Mean Anyway? ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”

Besides, the battle metaphor takes no account of the sheer randomness of the disease. Using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control. For the most part, we don’t know why one person is alive 10 years after the diagnosis of advanced cancer, whereas another dies within months.

By this reasoning, no amount of fighting or battling cancer can affect its outcome. Commenting on the study, the researchers said, “Many people have found relief in this research. Cancer has a long history of stigmatization. Patients and family members frequently blame themselves, believing there was something they could have done to prevent their or their family member’s cancer. We have heard from many of these families and are pleased that our analysis could bring comfort and even lift the burden of guilt in those who have suffered the physical and emotional consequences of cancer.”

Cancer is a disease; not a military campaign

Cancer is a disease; not a military campaign. In the words of patient and caregiver Jana Buhlman, “it’s a disease that people manage.” Cancer is a complex disease. Yet there still exists a prevailing attitude to cancer which treats survival as though it were somehow an act of will. You’ve got to be strong, remain positive and be courageous to overcome the disease. Clodagh Loughrey, who was diagnosed with breast cancer nine years ago, explains, “I was absolutely petrified at the time, the opposite of strong or courageous, and to be also made to feel guilty for being scared by well-meaning exhortations to be ‘be positive’….people mean well and I didn’t want to sound ungrateful for the support as it is far worse (and easier for them) to avoid people with cancer, and some people did.”

What other diseases or condition do we say this about? “Do we fight a heart attack or a stroke? Are we told in any other illness to “keep fighting”? asks Jo Taylor, Founder of After Breast Cancer Diagnosis. The fact is cancer doesn’t care how courageous or positive you are. Patients are in remission because treatment eliminated every cancer cell from their bodies, not because the patient fought courageously or was endlessly positive. As a patient who is currently NED (i.e. no evidence of disease) I didn’t fight any harder than anyone else with this disease. I haven’t “beaten” cancer. I don’t know for sure that cancer will not come back again.

Cancer isn’t a game of winners and losers

I’ve lost count of the number of times I’ve read about patients who are in remission from cancer, having “won their fight” against the disease. Journalists in particular seem incapable of writing about a person who has died from cancer without resorting to the “lost fight” cliché. Julia Barnickle, who is living with metastatic breast cancer, points out that while she doesn’t like the term personally, “I have no problem with cancer patients using fighting talk. However, I do object to the media using it, especially in the situation where someone is said to have “lost their battle with cancer.” It’s simply a hackneyed way of grabbing attention.”

Does this imply that patients in remission have somehow done more than those who aren’t in remission? Or that cancer progression or death from cancer is somehow an indication of failure – of not having had the ability to fight and defeat the enemy? “It seems,” in the words of breast cancer blogger Maureen Kenny, “if you’ve got cancer you’re almost always seen as battling or fighting it, more often than not bravely. We never hear of anyone dying of the disease after a lacklustre, take or it or leave it, weak-willed tussle.”

Cancer shouldn’t be reduced in this way to a game of winners and losers. Commenting at the time of the death of film critic Roger Ebert, Michael Wosnick, wrote: “The use of the word, “lose” is like a zero-sum game to me: if someone or something loses then that means that someone or something else wins. You can’t have a loser if you don’t have a winner. We should not so easily give cancer that kind of power over us.”

If someone has lifelong hypertension and dies from a heart attack, do we say in the obituary that they lost their battle with high blood pressure? Then why do so many deaths from cancer get reported this way? While it’s not quite “blaming the victim”, it does have an implicit element of somehow placing the ultimate responsibility for having died in the hands of the deceased.

When words blame

Oncologist, Dr Don Dizon, tells a story about taking care of a young patient with ovarian cancer during his first year as an attending physician at Memorial Sloan Kettering Cancer Center. The patient had just relapsed from first-line treatment and in his discussion with her about the next steps, Dr. Dizon explains that, “despite the failure of first-line treatment, there are many more options for you.”

The doctor was stunned by the patient’s tearful reaction to his words: “You make it sound like this was my fault, like I did something wrong!” she said. “I’m sorry I failed chemotherapy, if that’s what you think, and I’m sorry I disappointed you.”

It’s a lesson Dr. Dizon has never forgotten, as he describes in his own words: “It was never my intention to place ‘blame’ on something so devastating as a cancer recurrence, and I certainly did not mean to imply that she had failed. These many years later, I still consider this encounter a watershed moment in my career as an oncologist.”

The “battle with cancer” may be “only a metaphor” but it stands for a quite destructive attitude that, to the extent it influences doctors as well, distorts the treatment of cancer too. In a JAMA Oncology article, the authors discuss how “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long. The fact is that 8% of patients receive chemotherapy within 2 weeks of dying of cancer, and 62% within 2 months. Late chemotherapy is associated with decreased use of hospice, greater use of emergency interventions (including resuscitation), and increased risk of dying in an intensive care unit vs at home. This all clearly reflects our society’s need to battle until the end.”

Embracing a fighting spirit can work for some patients

This isn’t to deny that some cancer patients embrace a fighting spirit as a way that helps them feel more in control. Cancer survivor, nurse and educator, Beth Thompson describes how “identifying as a shorn ‘warrior’ psyched me up for and pushed me through treatment.” Sara Turle, a 9-year survivor of cancer, also found resonance in the metaphor. “For me I was never battling cancer: it’s a disease, but I was definitely battling how I managed diagnosis and particularly getting through the side effects of treatments,” she explains. “It helped me to look at each stage and at times each day and even hour, at worst points, with a view of getting through, surviving and celebrating with just a simple acknowledgement. It truly helped me feeling that achievement and it helped with knowing that I was going to have to face it again.”

Professor Elena Semino and her colleagues have been studying the use of metaphors in the way we talk about cancer since 2012. As part of their research they have analysed 1.5 million words taken from interviews and online forum discussions involving cancer patients, family carers and health professionals. The team found that the type of metaphors people chose to use when describing their cancer reflected and affected how they viewed and experienced their illness. “For some patients, some of the time, the idea of being engaged in a fight is motivating,” explained Sermino. “Some people say with pride that “I’m such a fighter”, and they find a sense of meaning and purpose and identity in that. The study showed that we are all different, and different metaphors work for different people, and at different times.”

I agree. I’m not criticizing individuals who draw strength from calling themselves fighters. Everyone is entitled to use whatever language they want to describe their own experiences. As Sara says, “My belief is that the right language is what is right for the individual person and I would hate to think that people who do find this language helps, feel that they can’t openly use for fear of what others may think. Whatever language gets you through is the right language for me. I am very mindful of when speaking to people now to be sensitive to the language they are happy with and these discussions of differing views have helped me with this.” Beth agrees and asks, “Can we educate while still leaving room for what works for the individual experience of cancer?”

Wrapping Up

If you believe, as many patients do, that the words we use to describe cancer matter, how then should we begin to conceptualize it? Stephanie Sliekers asks a similar question in this HuffPost article, “If cancer really is the ‘enemy’, what’s the best way to beat it?” Her answer? “By studying and understanding it as it is, a disease borne out of human blood, tissues and genes, a disease that lives within us whether it is treatable or fatal.”

Perhaps, rather than speaking of cancer in militaristic terms, it’s better to communicate that we are “living with cancer” for as long and as well as we can. And when a person dies, let’s not say he/she has lost anything, but rather that person has died after living with cancer for a period of time.

Words matter a great deal in life, death, and everything that comes in-between. To quote Dr Dizon “Words are powerful and despite our best intentions, can hurt—this is true in life, and it is true in oncology.”

Tips on Finding a New Job or Changing Career after Cancer Treatment

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In this three-part series, I’ve been exploring different aspects of returning (or continuing) to work after a cancer diagnosis. So far I’ve tackled issues from preparing to return to work and handling your workload, to dealing with problems such as fatigue and concentration.  In the final part of this series, I’m turning my attention to finding a new job after cancer treatment has ended.

There are a number of reasons why you might be looking for a new job after cancer. Perhaps you crave a fresh start, somewhere where you’re not known as the co-worker with cancer.  Or perhaps you need more work flexibility – such as the option to work part-time –  but your current employer isn’t in a position to make the adjustments you need. Or maybe you want to change career, switching direction towards something more meaningful and fulfilling.

Whether you’re looking for a new job or considering a new career direction, this month’s article has plenty of practical advice to help you.

1. Get Clarity on Your Direction

A good place to start is by getting clear on your new goals, financial needs and current skills and abilities. Grab a pen and some paper and take some time thinking about your responses to the following questions.

  • What are my core skills and strengths? Am I using them to their fullest in my current (or previous) job? Which skills and interests from my previous jobs will transfer over to a new position or field?
  • What new insights or skills have I gained through cancer? Do I want to be able to use these in my job?
  • Have my career goals changed? Do I want to work in a similar job but with more work-life balance? Or do I want to try something new?
  • Do I have the required skills for a new career interest? Will I need to retrain? How will this impact me financially?
  • Do I have the stamina to take on something new? Do I need to consider the impact of any long term side-effects from treatment on my ability to work?

2. Update Your Resume

The next step is to get your resume in order.  If it’s been several years since you last applied for a job, you may need to take into account that resume writing has changed quite a bit in the past decade. For example, the chronologically based resume (listing job titles, companies and dates in chronological order), while still popular, is giving way to a more dynamic skills-based one.   This is good news if you want to work around a gap in your employment history.  For a skills-based resume, you will create a relevant summary of your skills, career accomplishments and career goals and position this directly below your name.  You should aim to provide an example of an area of accomplishment related to each specific skill.

Pro Tip: When it comes to including employment dates, don’t include months in the dates, only years. This helps narrow the work gaps.

3. Develop Your Network

Make a list of everyone you know who is currently working in your industry or the industry you’d like to be in. Take a strategic approach by setting achievable goals for the number of people you want to connect with every week. Reach out to them and tell them about your plans to find new work or change career direction. Ask them to keep you updated of any new job openings and leads. Hiring managers are more willing to consider you for an interview after a personal recommendation.

Pro Tip: When it comes to building your professional network there’s no better tool than LinkedIn. LinkedIn multiplies your existing personal and professional networks by making the connections of your connections available to you at the touch of a digital finger.

4. Optimize Your LinkedIn Profile

Your LinkedIn profile is the cornerstone of your professional brand online. While you may already have a profile on the platform, is it optimized for a job search?   LinkedIn profile optimization simply means that your LinkedIn profile is fully updated to maximize your visibility on the platform. Everything you do on LinkedIn begins with your profile. Yet many professionals still treat their LinkedIn profile as little more than a place to park their resume and promptly forget about it.

You won’t be effective at LinkedIn networking if your profile doesn’t entice people to get to know you. Here are some quick tips to optimize your profile (for a step-by-step guide with more detailed information, click here).

  • Make your first visual impression count by displaying a high-quality professional photo.
  • Adding a background image directly behind your photo will help brand your profile. Think of it as your professional billboard.
  • Create a strong professional headline. This is a critical step because your professional headline is not just highly visible on LinkedIn, it’s also searchable by Google.
  • Nurture your LinkedIn relationships through regular engagement. This is not about making large numbers of contacts; rather, it’s about making meaningful connections.
  • Join industry relevant groups. Job openings are often posted by recruiters in industry groups. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.
  • Become an active and engaged user. When you log into LinkedIn, notice each time who shows up in your home feed. Most likely you will see the same few people. These individuals are getting more visibility because they are more active. If you make the commitment to become more active in your network, you will increase your visibility
  • Be strategic about when you’re active on LinkedIn. As a general rule, LinkedIn users are most active right before and after work (7–8 am and 5– 6 pm), as well as during lunch time.

Pro Tip: Don’t be afraid to use social media to your advantage: if you know the hiring manager’s or recruiter’s name, add them on LinkedIn.

5. Mind Your Digital Footprint

Employers are increasingly carrying out social media checks on prospective employees. Anticipate this by googling yourself to see what turns up.  Here is where a professional profile on LinkedIn can be enormously helpful to present the best impression. Because of the way Google’s search algorithm works, an optimized LinkedIn profile will frequently show up in the first few places of a Google search for your name.

While LinkedIn is an asset, other forms of social media may harm your search for a new job. Sharing personal information about your treatment through a blog, Instagram, Twitter or Facebook is publicly searchable by potential employers.  Many of us turn to social media sites and blogs to keep our families and friends updated on our progress and to seek support during cancer treatment.  But when your focus returns to work, you may not want your employer or prospective employer to know of your cancer history.

Pro Tip: Take some proactive steps to protect your privacy online.  Set privacy settings on things like Facebook so that nothing can be seen by people who aren’t “friends” (including pages you are a fan of – an often forgotten detail). Delete what you can from your postings on Facebook and other media that talk about your cancer. Set up a Google Alert to monitor mentions for your name.

6. Handling the Job Interview

A job interview is stressful at the best of times, but when you’re anxious about handling the question of cancer, it’s doubly so. Sixty-one percent of cancer survivors looking for a job said they fear disclosing their cancer diagnosis will negatively affect their chances of getting hired.

Rehearsing what you plan on saying ahead of time greatly reduces any anxiety you may feel. The more prepared you are before the interview, the more relaxed and at ease you will appear during the interview. Draw up a list of potential questions and practice your answers.  Accentuate the positive. For now, put aside your worries about how to explain the gap in your resume and spend some time focusing on why you are the right person for the specific job that you are applying for. List at least ten great qualities and skills you have and ask friends and family to help you brainstorm more. Try to find a willing friend or family member who will role-play the interview with you.

Remember you don’t have to disclose your cancer history either on your application or during an interview. The Americans with Disabilities Act prohibits employers from asking job applicants about a disability (this includes cancer) before offering them the job.  However, you may decide you want to be upfront about a work-related absence. If this is the case, you can deal with it by briefly explaining you had some time off work for a health (or family) related reason, but that’s behind you and you’re now looking forward to re-joining the workforce. Keep it simple, stick to one sentence or two and don’t be tempted to digress. Then switch the direction of the questioning back to your skills and qualifications for the job.

Pro Tip: Do your research before going into an interview. By showing off your knowledge of both the company and the industry, you are conveying to the interviewer that you are still up-to-date even if you have been absent from work for a period of time.

7. Considering a Career Change

Cancer changes your outlook on life.  Alongside an increased awareness of the preciousness of time, you may also have decreased tolerance for spending time on meaningless tasks. Many cancer survivors, my own self included, have felt a calling for more meaningful work after their treatment has ended.    I’d like to finish this back-to-work series by sharing the stories of three such people who have used their cancer experience as a way to help others and forged new careers in the process.

Jennifer Elliott was a pre-kindergarten to elementary school age music teacher before being diagnosed with bilateral synchronous breast cancer in 2014. Since her diagnosis, her focus has shifted to patient advocacy.  “My advocacy began when I realized that my access to industry trained people, thanks to where I live and who my friends are, was impacting my care in a positive way,” said Jennifer.   “That made me angry, because we should all have equal access to quality care.  I’m now applying to graduate degree programs in public policy because, as I’m advocating for breast cancer survivors I’ve learned that all the things I’m advocating for are impacted or dictated by policy and if I want to have the broadest impact I need some policy skills and training.”

Terri Coutee was focused on a life-long dream of completing a Master’s program in teacher leadership when she received news of her second breast cancer diagnosis. “The diagnosis was the catalyst to evaluate my professional career,” explained Terri.  “I had to focus on my treatment and major surgery over a period of seven months. This gave me time to re-evaluate, research, and refocus. I learned less than 25% of women and men were not being given their options for breast reconstruction after mastectomy. As a life-long educator, I realized I could educate those affected by breast cancer and learn from my experience. A blog about my successful breast reconstruction experience led to opening a non-profit Foundation to educate a global audience through social media, attending medical conferences, and making as many personal connections as I could to assist others through their own journey. The need is endless because we haven’t found a cure for breast cancer, yet. Until we do, I will continue to educate and provide resources for the very best medical care for others faced with mastectomy.”

At the age of 51, Chris Lewis wasn’t looking for a career change. “I was working for myself and was at the peak of my earning power,” he said. “Then a poor prognosis of incurable blood cancer and my life was turned upside down. I have since had many years of complex treatment meaning I could not return to employment of any description. As my survivorship moved from months to years I needed a purpose. My body was in bad shape but I still had a business mind.”

Unhappy at the poor resources and help for people living with cancer, Chris took to the Internet to voice his displeasure, leading to him running his own successful website Chris’s Cancer Community.  “This led to me becoming a global expert speaker and writer”, said Chris. “I am self-taught in social media and an award winning writer. As a patient advocate I speak at many high profile conferences. Cancer has taken a lot from me, but has shown me a new way of life I would never have experienced. The big bonus is the incredible people I get to meet and talk to daily. It seems even at my age I have found a new career!”