Advice for Speaking Up About Your DLBCL Care

Advice for Speaking Up About Your DLBCL Care from Patient Empowerment Network on Vimeo.

Why should you speak up about your DLBCL care? Dr. Jason Westin explains why being an active member of your healthcare team is vital and provides helpful resources.

Dr. Jason Westin is the Director of Lymphoma Clinical Research in the Department of Lymphoma/Myeloma in the Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Westin, here.

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Transcript:

Katherine:                  

Right. That leads me to my next question. What advice do you have for patients who don’t feel comfortable speaking up but they have questions about their treatment plan?

Dr. Westin:                 

Yeah. I think written questions sometimes are easier than trying to remember all of your questions. It always is a bit problematic when I go into a visit and a patient has six pages of paper written down for questions. We unfortunately don’t have unlimited time to get through all of those. But trying to condense into – prioritizing. Which of the questions are the ones that I feel like I must get into and which are ones that I can submit to have answered after the fact.

Perhaps the nurse could send me a note through the electronic medical record to answer questions 10-15 on my list. So, I think you can overwhelm a visit if you show up with a list of questions that are even 30-second answers might take an hour to answer all of them. That’s sometimes counterproductive, in my opinion, to have that level of detail on a single visit. But it’s fair to say, “Can I contact the healthcare team to get these answered electronically through the EMR,” or, “Can we table this and go into the questions that we didn’t get to at our next visit?” I think both of those are appropriate.

I think people that are not comfortable to push back on the physician, or the PA, or the nurse, doing things in writing sometimes feels a little bit less confrontational for people. So, I think that’s important to have as a backup option.

Katherine:                  

And I imagine caregivers can be helpful in this regard as well.

Dr. Westin:                 

Correct. Yeah. I think caregivers are a key part of that. And sometimes we go into a room and the patient says, “Nope. Don’t have any questions.”

And then, the caregiver has got a whole list of them. That’s very appropriate. Caregivers have that responsibility and that role to play sometimes, to be the key questioner.

Katherine:                  

Yeah. Are there resources to help patients and their loved ones to weigh the risks and benefits of different treatment options?

Dr. Westin:                 

There are. There’s lots of resources online and I would make sure that you go to a trusted site. Sometimes things sound too good to be true because they’re not true. But things like the lymphoma research foundation or the LLS, the Lymphoma & Leukemia Society, are great sources for information. And sometimes they may link you to other sites. You could also ask your healthcare provider does their institution have anything specific about this disease. Sometimes your healthcare provider might tell you, “Here’s the right article if you want to go read the source, the clinical trial, that was published to show why this treatment’s good.” They may show you that paper.

But online, careful how deep into the weeds you go because sometimes you can find things that aren’t correct. Trust good, trusted sources.

Katherine:                  

Do you think patients should consider a second opinion consult with a specialist?

Dr. Westin:                 

It sometimes is appropriate. Other times, there’s not a lot of time. If treatment’s needed right away, you don’t want to get sicker because you’re waiting for seeing somebody two states over and it takes two weeks to get there. Sometimes you want to start treatment and get the second opinion after you’ve got the fire put out. But the second opinion usually gives more peace of mind than actually changing treatments. But if you’ve got that thought of, “I’m not so sure this is what I’d like to do,” or, “I’d like to get more information,” a second opinion may be very appropriate.

The Benefits of Having a Role in Your DLBCL Treatment Decisions

The Benefits of Having a Role in Your DLBCL Treatment Decisions from Patient Empowerment Network on Vimeo.

Diffuse large B-cell lymphoma (DLBCL) patients have a vital role in their treatment decisions. Expert Dr. Loretta Nastoupil shares advice for patients on how to advocate for their best care, the value of a second opinion, and credible resources to boost knowledge about DLBCL.

Diffuse large B-cell lymphoma (DLBCL) patients have a vital role in their treatment decisions. Expert Dr. Loretta Nastoupil shares advice for patients on how to advocate for their best care, the value of a second opinion, and credible resources to boost knowledge about DLBCL.

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Transcript:

Katherine:

But what do you feel is the patient’s role in this whole decision?

Dr. Nastoupil:

So, I’ve actually been a patient myself, and I have mixed feelings about it. I think oftentimes as an oncologist, we share decision-making when we don’t know the exact path forward, meaning if there’s something controversial or you have more than one option, generally, we kind of put out all the information to the patient, and we want you to be part of that decision-making.

And I think that’s important because we’re all humans, and we all want liberties. And we want our patient rights to be acknowledged and respected. And that’s important. I think sometimes though that also burdens patients with making decisions when they may feel they don’t have all of the information to make an informed decision.

But your role as the patient is you know your body better than anyone. And, generally, if there’s something that just doesn’t fit well or sit well with you, be vocal about it. So, I’ve been in a situation where I felt like I had to speak up a few times, and not that I have all the answers. And I am an oncologist. So, I generally have more insight than others.

But, generally, I was right in that, again, I think we know our own bodies. And when you feel that something is being missed or maybe not given the time and attention it deserves, speak up. You also have a role in making sure that the diagnosis is correct.

So, I generally advise all patients because everything hinges on the diagnosis in lymphoma, more so than the staging, more so than sometimes even the treatment itself.

Getting a second opinion can be incredibly valuable because you have another pathologist that will lay eyes on this biopsy. And lymphoma is rare. So, a second opinion can be incredibly valuable, and that’s usually something driven by a patient more so than an oncologist. Though some oncologists – and I would say the majority – are open to an opinion because they too would like information or confirmation that they’re on the right path.

Katherine:

Certainly.

Dr. Nastoupil:

The other thing that I think patients can have role is exploring what trial options are out there and available to them. I think that is sometimes a tough subject to discuss. Clinical trials are not only for patients who have failed all the standard treatments.

And it’s usually not an option of hospice versus a clinical trial. That’s absolutely an inappropriate time to consider a clinical trial. And, generally, there are trials at any point in a patient’s journey where there is some controversy as to the best path forward.

Again, I’ve been discussing the last 40 years of trying to improve upon R-CHOP is because 60 percent of patients were cured, but 40 percent were not. There is always a scenario where we could do better. And, generally, the only way we will improve upon outcomes is to conduct important rational clinical trials.

So, sometimes, it’s as simple as reaching out, participating in programs such as this, reaching out to The Lymphoma & Leukemia Society or the Lymphoma Research Foundation to just explore what are your trial options. They may not be appropriate for you right now, but at least understanding where there is an opportunity to participate in a trial is worth exploring.

Katherine:

Dr. Nastoupil, I’m wondering how patients can feel confident in speaking up and becoming a partner in their care?

Dr. Nastoupil:

So, it’s important to recognize, and I reflect on this all the time. Generally, once patients have been rendered a diagnosis of cancer, that’s a life-altering event. And even if I spend a lot of time trying to reassure patients that outcomes for lymphoma patients are very good, generally we’re aiming for cure, that’s not true for everyone.

And you can’t help but be concerned that you will succumb to this disease or that the toxicity of therapy is going to be life-altering and impact your quality of life in such a way that it’s no longer the life that you were happy to live.

And so, I recognize that we are partners in this. My job is to choose the most effective therapy that will try and accomplish the goals we set out to achieve. However, sometimes, oncologists make assumptions about what the goal of a given patient is.

We’re assuming that longevity or living is the most important goal. Whereas sometimes, people might care more about the quality of life, or they may need more reassurances about what the options are or their realistic outcomes with therapy. Because, again, I’ve mentioned before, oncologists are generally eternal optimists. We tend to sugarcoat things a little bit.

So, it’s important for patients to recognize that they will have a shared decision responsibility, meaning oftentimes we will provide all the information that we have access to in terms of a given treatment.

What is the likelihood of success, what is the potential risk in terms of toxicity, and what we’re leaning towards one therapy over another, particularly if you have more than one option.

But, ultimately, we need patients to share with us what their goals are in terms of outcome of that treatment so that we can then potentially refine our treatment selection. So, again, being informed, participating in programs like this so that you understand what makes one lymphoma different from another. Why would one oncologist offer one treatment and another discuss something else?

So, understanding what the different lymphomas are, how they might be approached differently, what the new therapies are. I struggle to keep up with just the lymphoma literature and changes. I can’t imagine what it must be like for an oncologist that treats every cancer type. So, again, understanding that new drugs are approved almost every couple of months in lymphoma may provide an opportunity for patients to share new information with their oncologists as well. 

Key Steps Following a DLBCL Diagnosis

Key Steps Following a DLBCL Diagnosis from Patient Empowerment Network on Vimeo.

What are key steps to take after a diffuse large B-cell lymphoma (DLBCL) diagnosis? Expert Dr. Robert Dean shares advice for newly diagnosed DLBCL patients to access optimal care.

Dr. Robert Dean is a hematologist/medical oncologist at Taussig Cancer Institute at the Cleveland Clinic. Learn more about Dr. Dean, here

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Transcript:

Katherine:

Yeah, of course. What three key pieces of advice would you have for a patient who’s just been diagnosed with DLBCL?

Dr. Dean:

The first, I would say, is always consider getting a second opinion. I would say that’s true for a patient who’s receiving care with a local oncologist who sees and treats all forms of cancer and who’s very close to home. But I would say that’s true for someone who comes and sees me as an oncologist who treats only lymphoma patients. You should never worry about hurting your doctor’s feelings by going and talking to someone else to get another perspective on their case. The second is that they should make sure that their biopsy has been checked for the other tissue-based predicting factors that we talked about earlier that can help give a better idea of whether their chances of cure are higher or possibly lower with standard R-CHOP treatment.

And if they’re in a higher-risk group that might have a lower chance of cure with R-CHOP, then they should ask, “should I be receiving a different kind of treatment?” And then, the third thing I would say is, they should always ask, “is there a clinical trial that’s a good fit for my situation. And if there isn’t one here, is there one somewhere else that’s worth me considering even if it might mean me traveling somewhere?”

Katherine:

Right.

Dr. Dean:

There’re always a lot of clinical trials around. And if there’s a good clinical trial that’s a fit for someone’s medical situation, and I would say, if it’s pretty close to the care that they need already and is asking an additional question and possibly providing an additional element to the treatment that may be helpful and that will help us learn something along the way, then in my mind that’s the best-case scenario. 

Should DLBCL Patients Consider a Second Opinion?

Should DLBCL Patients Consider a Second Opinion? from Patient Empowerment Network on Vimeo.

 Should diffuse large B-cell lymphoma (DLBCL) patients consider a second opinion or consultation with a specialist? Dr. Jean Koff explains the benefits of a second opinion and how it could help provide improved care.

Dr. Jean Koff is an Assistant Professor in the Department of Hematology and Oncology at Winship Cancer Institute at Emory University. Learn more about Dr. Koff, here.

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Transcript:

Katherine Banwell:

What’s your advice to patients who might feel like they’re hurting feelings by seeking a specialist or a second opinion?

Dr. Koff:

Yeah, I would put them at ease. I would say that the vast majority of doctors who refer their patients to me for a specialty opinion or a second opinion who are not specialists, they are happy to have a specialist weigh in and give some guidance and expertise on treatment. Because we all have the same goal, which is to give you the patient the best treatment that we know how to, the best recommendations for your particular disease.

The way I see co-managing a patient who has maybe a community physician that they started off seeing and someone like me, who they see as a second opinion is that I work with their local doctor as part of a team. And I think of us as both team members in treating their cancer.

And it has not been my experience that these doctors have their feelings hurt when a specialist is brought on. A lot of time it’s in fact the opposite that they are glad for the patient, that there is somebody who can help guide treatment decisions.

Expert Advice for Newly Diagnosed DLBCL Patients

Expert Advice for Newly Diagnosed DLBCL Patients from Patient Empowerment Network on Vimeo.

Dr. Jean Koff shares key advice and important steps for newly diagnosed diffuse large B-cell lymphoma (DLBCL) patients to take to optimize their care and explains how seeing a DLBCL specialist can make a difference. 

Dr. Jean Koff is an Assistant Professor in the Department of Hematology and Oncology at Winship Cancer Institute at Emory University. Learn more about Dr. Koff, here.

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Transcript:

Katherine Banwell:

What three key pieces of advice would you have for a patient who has just been diagnosed with DLBCL?

Dr. Koff:

So, my three key pieces of advice are ones that I would give to almost any patient with a blood cancer. The first is to make sure that you get a referral as soon as possible to a lymphoma specialist. The second is to bring a family member or multiple family members if you can to any appointment where you’re meeting with your cancer doctors.

And the third is to make sure that you make a list of questions that you want to ensure that you have answered for yourself before you go into these visits with your cancer providers. Because a diagnosis like this can often be overwhelming and there can be a lot of information that is given at the visit. And you want to make sure that when you’re at that visit, you have the questions that are important to you answered. A good way to do that is to make sure you have notes you can refer to, to make sure all of your questions getting answered.

Katherine Banwell:

Why is it important for a patient to see a DLBCL specialist?

Dr. Koff:

Well, something that’s very exciting about DLBCL is that the field is changing rapidly in terms of what treatments are available and what treatments are recommended. And a cancer doctor who is not only responsible for seeing lymphoma patients, but also has to keep up to date with all the other cancers that they see, including solid tumors.

It’s often very hard for them to really stay abreast of all these changes in the rapidly changing field. So, a lymphoma specialist is going to be up to date on the current recommended practices for DLBCL.

And they can also be better equipped to make very specific recommendations for workup and for treatment approach for your particular case, taking into consideration all of those nuances that we talked about earlier that may apply to a treatment in DLBCL. And then, lastly, those lymphoma specialists often have access to either specialized treatments that are only available at certain centers or clinical trials of new treatments that are not available anywhere where the clinical trial is not being conducted.