Tag Archive for: second opinion

Essential Imaging and Chromosome Tests after a Myeloma Diagnosis

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Essential Imaging & Chromosome Tests After a Myeloma Diagnosis from Patient Empowerment Network on Vimeo.

Charise Gleason, a nurse practitioner, explains why tests such as bone marrow biopsy, FISH test and full-body imaging are considered essential for patients after a myeloma diagnosis.

Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.

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Transcript:

Charise:                       

The essential testing that a myeloma patient should undergo following a diagnosis is – obviously, you’ve had those diagnostic test labs, the 24-hour urine, some scans, but the specific things that we need are a bone marrow biopsy.

That includes cytogenetics and FISH, and we can talk a little bit more about that. You also want full-body imaging. We used to always use a skeletal survey, which was an X-ray of the long bones. But, really, the standard of care now is a whole-body scan.

So, depending on what your oncologist or your institution has, that would be a full-body CT scan, a PET-CT scan, or a full-body MRI. So, one of those tests is recommended. It’s not unusual if you have a PET. Like our institution, we use PET-CT. So, for a newly diagnosed patient, we’re also going to get an MRI of the spine for a further snapshot.

What we’re looking for with a full-body imaging is we want to make sure that there aren’t any lytic lesions.

So, with an X-ray, you have to have about 30 percent bone loss before it’s going to show up on an X-ray. So, those traditional X-rays that we used to use could actually miss an active lesion. So, in that diagnosis, we want to know that there is no active myeloma. And those other scans are going to be more specific to that.

So, the cytogenetics of a bone marrow biopsy are going to tell us more about the biology of the disease. So, cytogenetics actually grows out the pairs of cells. And so, that’s why that portion of the test can take a while to get back.

At our institution, it can take two to three weeks, because you’re actually growing out those cells to look at the chromosomes. And remember these are chromosomes, or genes, of the plasma cells. And so, we’re looking for those abnormalities that might be present. So, you think about it more for the biology of the disease.

When we’re looking at FISH, we’re also looking… That test shows a little bit different. It comes back quicker. It shows two different phases of cell changes.

And so, it will tell us about chromosomes as well. But do you have any additional chromosomes – so, that would make it a hyperdiploid narrow. It tells us if there’s a loss of a chromosome – so, you’re missing one, a hypodiploid. It also tells us about translocations – so, when you’ve had a piece of a chromosome change and go to another cell. And so, that, for instance, would be like that translocation t(11;14) or translocation t(4;14). So, it’s essential to have that testing to tell us about that, because it helps guide treatment. And as we talk more about targeted therapy, these things really can come into play.

New and Improved Lung Cancer Treatment Options

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New and Improved Lung Cancer Treatment Options from Patient Empowerment Network on Vimeo.

Are there new lung cancer treatment options that you should know about? Expert Dr. Heather Wakelee reviews the latest research. Looking for more information? Download the Find Your Voice Resource Guide here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

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Transcript:

Dr. Wakelee:

So, the treatment of lung cancer has been changing very, very quickly. We’ve had a lot of new options that have become available in the last few years, and there’re new ones coming along all the time. When I started treating lung cancer, which was a number of years ago, we were able to treat and help people.

But our only real option when the cancer was metastatic was chemotherapy. Chemotherapy is still an important part of treatment for many people, but now we have other options. So, starting about 15 years ago, people were able to identify that some tumors had specific genetic changes. We also call these molecular changes, or gene mutations, or just mutations in the tumor. They have a lot of different names.

But when we do find them, these are things like EGFR or ALK or ROS or BRAF or MET, we actually have different treatment options that only work for tumors that have those specific genetic changes, and don’t work in tumors that don’t have those. So, when we talk about genetic changes a lot of people think, “Oh, that’s something that I’ve inherited.”

These are not things that are inherited. This is not something that’s in the whole person. It’s just in the tumor. So, it’s a mutation that happened in the DNA of the cell, and that cell then became the cancer. And depending on what that mutation or mutations are, we still can have chemotherapy, and that can work.

But for specific ones, and specifically EGFR, ALK, ROS, BRAF, we know that there are pill drugs and oral medication that actually is gonna be better than chemo, at least for a period of time, if a cancer has that specific mutation.

So, it’s really, really important to figure that out. It’s not something a doctor can sort out just by looking at the patient or looking at the tumor under the microscope. We have to do special testing, looking at the tumor DNA.

And we now have ways of looking for those mutations, not just in the tumor tissue, but also sometimes with blood. So, we can draw a blood test and look for those as well when there’s a tumor that’s shedding the DNA. So, it’s really important to think about that. And we now have a whole host of medications that we can offer people when we the find these mutations that we didn’t used to have, even a few years ago.

And, actually, if you think back over the last five years, we’ve had new drugs approved, a few of them every year, for these specific gene mutation tumors, so that’s really, really exciting. The other thing that’s changed dramatically just in the last five years is what we call immune therapy.

So, when we think about the different types of treatment, chemotherapy works by poisoning DNA. And in order to make a new cell, you have to make new DNA. Tumors are doing that more than a lot of normal tissue, and so we’re able to give chemotherapy and specifically hurt tumors and not the rest of the person very much.

With the targeted treatments where we find a gene target and where there’s a gene mutation in a tumor, those are medications that specifically hit that altered gene, that altered protein made by the gene. And then they work really, really well. What immune therapy does is it actually changes the way your body’s own immune system interacts with the tumor. So, we have a lot of types of immune cells, but the ones that are involved in really fighting the cancer directly are called T cells.

And so, normally, a T cell would recognize something that’s foreign like an abnormal-looking cell that’s a cancer, and attack it. But we have a lot of different systems in our body that stop the T cells from recognizing normal tissue and attacking it.

And one of the best systems for that is something called PD-1 and PD-L1. And so, if you have a T cell and it sees a PD-L1 signal on tissue, it assumes that that tissue was normal tissue and it doesn’t attack. But if you can hide that PD-L1 signal, then if it’s a T cell, a part of the immune system comes in and doesn’t see the PD-L1, it doesn’t get the stop signal. It’s not told to not attack. So, it could attack the tumor better.

And I’m not describing it well because it’s so complicated. There are a lot of different factors that help a T cell know whether to attack or not to attack. But, again, one of these key stop signals is the PD-1, PD-L1 interaction. And so, scientists were able to develop medications that can block PD-1 or PD-L1. And when those medications are in the body, if a tumor is using that particular stop signal as a way to hide from the immune system, when you give the medication that blocks it then the tumor is no longer hiding.

And then the immune system, those T cells, can come in and attack. So, these immune treatments, and there are now a lot, and so these are drugs, like pembrolizumab, also called Keytruda; nivolumab, which also called Opdivo; durvalumab, which is called IMFINZI. And there are many, many others. Those medications have now been shown to really, really help to fight cancer, particularly when the tumor is using that PD-L1 signal. But they can also be combined with chemotherapy and then they work even if there’s not a lot of PD-L1 in the tumor. So, again, it’s a very complex story.

But where we’ve seen dramatic improvements in treatment is we have targeted treatments when the genes are – there are specific genes mutating in tumors. We have immune therapy, which worked for a lot of other people. And sometimes when there’s also gene mutation, but not always, we still have chemotherapy. And then there’s ongoing research with a lot of different medications. Many of them are focusing on better ways to get the immune system to work against cancers beyond what we can already do.

Diagnosed with Lung Cancer? Why You Should Seek a Second Opinion

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Diagnosed with Lung Cancer? Why You Should Seek a Second Opinion from Patient Empowerment Network on Vimeo.

Should you seek a second opinion? Lung cancer expert Dr. Heather Wakelee explains when to consider seeing a specialist. Looking for more information? Download the Find Your Voice Resource Guide here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

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Transcript:

Dr. Wakelee:

So, when facing a new diagnosis of lung cancer, one of the questions that often comes up is whether one should go get a second opinion or see a lung cancer specialist. And that is a question that obviously is gonna vary quite a bit by where a person is, where they’re getting seen, and what they’re facing.

I think a time that it’s really critical would be if someone has a Stage III lung cancer or told it might be Stage III. That’s a really good time to get a second opinion and make sure that the group that is taking care of you has had a multidisciplinary discussion. And when I say multidisciplinary, I mean, a thoracic surgeon, a radiation oncologist, and a medical oncologist have altogether looked at what’s going on with the particular case of that patient to decide up front what’s gonna be the best approach.

Because sometimes surgery is the right first approach. And sometimes it’s not. And sometimes radiation’s important, and sometimes it’s not.

So, it’s really critical to have a big team looking at what’s going on for Stage III. And if you’re in a hospital that really doesn’t see a lot of Stages III lung cancer that might be a good time to think about getting a second opinion outside of where you’re being treated.

I think, otherwise, if someone is newly diagnosed and we know the cancer is early stage where surgery might be involved, it’s good to check in that the surgeons who would be doing your operation are surgeons who know about lung cancer and have done lung cancer surgeries frequently. Sometimes in smaller hospitals there are surgeons who do both heart and lung surgery. And we know that the outcomes are not always quite as good in that setting.

Sometimes there’s no choice, and that’s okay. But if there is an opportunity to talk to a dedicated thoracic surgeon who’s used to doing lung cancer surgery, that’s another good time to get a second opinion. When we’re dealing with a more advanced stage of metastatic lung cancer, if someone is newly diagnosed and their tumor ends up having an unusual gene mutation or translocation.

And the molecular changes in lung cancer are really important to know about. And things like EGFR and ALK and RAS, where most medical oncologists will be familiar. But there’re others, like BRAF and RET and MET, and those can really change treatment outcomes as well, but not everybody who sees lots of different kinds of cancer as an oncologist will know everything there is to know about those.

So, if you have an unusual gene mutation, that’s another good time to get a second opinion with someone who’s a dedicated lung cancer expert. And usually those folks are at the larger academic medical centers, so oftentimes in cities, or affiliated with universities.

Another time is if someone does have a tumor with an EGFR, ALK, or one of the more common mutations, but the main drugs have stopped working, that’s often a time where someone who has specialized just in lung cancer might have some other options.

It’s also something to think through when someone’s newly diagnosed, if they know that their doctor has looked at the immune markers like PD-L1, and looked at the genetic changes in the tumor, and has a clear plan that’s gonna involve chemotherapy, or chemotherapy plus radiation, or chemotherapy plus immune therapy.

Then there might not be something that’s gonna be different in an academic center. But before you start treatment, if you’re still feeling okay, don’t have to start treatment tomorrow, and wanna know maybe that there’re clinical trial options, that’s another time to think about getting a second opinion. And a lot of academic centers will work to get people in very, very quickly if they knew they’ve just been diagnosed and they really need to get started on treatment right away.

Newly Diagnosed With an MPN? Start Here.

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Newly Diagnosed with an MPN? Start Here. from Patient Empowerment Network on Vimeo.

If you’ve been diagnosed with an MPN, such as essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF), Dr. Ruben Mesa outlines key steps you should take, including a visit with an MPN specialist.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

See More From the The Path to MPN Empowerment

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Transcript:

Dr. Ruben Mesa:

Patients who have a Myeloproliferative Neoplasm should consider seeing an MPN specialist at least at some frequency. The myeloproliferative neoplasms are not common illnesses. They’re not exceedingly rare, but they’re not common. And there is many nuances in terms of how we best diagnose the disease; the discussion we have with you regarding what are the treatment plans and goals, and then putting that plan into effect.

So, frequently, there’s a value in seeing someone who focuses on MPNs to help to establish that plan, and then frequently, there is a home physician, hematologist, or medical oncologist that works together along with the specialist in terms of managing the patient.

When patients first come for their visits related to an MPN, they have many questions. You know, they’re not common diseases, and people typically don’t have much experience with them. They’ve not had a family member that’s afflicted or someone at work. So, frequently, it comes on out of the blue. People will frequently, sometimes, go online and get a lot of information, but sometimes too much information; information that may or many not be appropriate for them.

So, there are many questions that are valuable, and I always advise patients to write down their questions ahead of time because sometimes in the heat of the moment, having a conversation, particularly with a new physician or provider, those questions may not, necessarily, be top of mind for them. So, we can go through those questions clearly.

I think key questions, I wouldn’t limit it to one key question, but I’d say I would put them in categories. 1.) Truly understanding the diagnosis; what’s the actual diagnosis that that patient has. 2.) What does the physician think are the risks that patient has? With each of the diseases, there are different risk classifications, and that will also help to give patients a frame of reference if they read other information about their disease online from highly reputable sources, or other educational sort of materials.

To understand, what is the recommended treatment plan. The plan may or may not included medications and understand what those medications are intended to do, and what their side effects may be, or what to anticipate.

It may or may not include aspirin, it may or may not include phlebotomy, or it may or may not include other therapies. So, understanding that diagnosis, understanding the risk, and understanding, what is the recommendation in terms of treatment.

Diagnosed With an MPN? Why You Should Consider a Second Opinion.

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Diagnosed With an MPN? Why You Should Consider a Second Opinion. from Patient Empowerment Network on Vimeo. 

 Physician assistant Lindsey Lyle explains the importance of seeking a second opinion when diagnosed with an MPN.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

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Transcript:

Lindsey:

When a patient is initially diagnosed with an MPN, seeking a second opinion is generally a very good idea, especially if patients are perhaps in an area where they do not have access to academic medical center.

The reason is that MPNs are such a small percentage of blood cancers – and, blood cancers in and of themselves are very rare, so MPNs are very rare, and especially in rural places, physicians do not have access or experience so much with MPNs. So, especially in those scenarios, I always advise a second opinion.

However, even within the academic medicine world, for example, if a patient is referred to me by their primary care physician or our institution, we always offer patients to seek a second opinion. Really, this is to gather information and either encourage the patient because the recommendation is the same or also to perhaps have a different idea for treatment that may fit the goals of the patient better, and so, I’m always telling patients to seek second opinions.

Why Getting a 2nd and 3rd Opinion Made a Difference In Her Cancer Treatment, With Sasha Denisova

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This podcast was originally publish on WE Have Cancer by Lee Silverstein on May 7, 2019 here.

Sasha Denisova – WE Have Cancer

Seeking out a 2nd and 3rd opinion in her cancer treatment resulted in a dramatic improvement in Sasha Denisova’s quality of life.

Sasha first appeared on this podcast in Episode 83 where she shared the struggle she faced getting doctors to take her colorectal cancer symptoms seriously.

During our latest conversation she discussed why she made the decision to forego treatment at the Mayo Clinic in Minnesota to seek treatment at Memorial Sloan Kettering in New York City. We also discussed:

  • How she got the courage to challenge the initial treatment recommendations made by her doctor and why it’s important for everyone to advocate for their best care.
  • The importance 0f seeking out opinions from the top rated cancer facilities in the U.S.
  • How she eased herself back into working out in the gym and why working with a guided fitness instructor was important.
  • Why exercise is vital to her well-being and how most cancer patients can find an exercise routine that works for them.

Finding Your Voice #patientchat Highlights

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Last week, we hosted an Empowered #patientchat on finding your voice and what stops patients from seeking a second opinion.

A second opinion is crucial to prevent misdiagnosis or unnecessary procedures or surgeries. A study done by Mayo Clinic showed that as many as 88% of patients who get a second opinion go home with a new or refined diagnosis. That shows that only 12% of patients receive confirmation that their original diagnosis was complete and correct. Still, a lot of patients never get second opinions. So, we wanted to chat about this and see what the Empowered #patientchat community had to say, and these were the main takeaways:

The Top Tweets…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Full Chat