How tall are you? Do you eat breakfast cereal? What’s your blood pressure? Oh, and, moms, how old were you when you had babies? The answers to these questions just might be an indicator of your cancer risk. Sounds strange, doesn’t it? Well, if October’s Notable News teaches us anything, it’s that strange is not so unusual, especially when it comes to cancer risks.
The mysterious workings of the human body continue to offer up surprises, and appropriately enough for October, the latest surprise is about breast cancer, according to medicalexpress.com. For some time, scientists have known that women who have babies before the age of 30 have a reduced risk of getting breast cancer later in life, but now they know the specific week in which the risk reduction occurs. Women who have babies after 34 weeks averaged a 13.6 percent lower risk of developing breast cancer than did women who had no children. The risk reduction if the pregnancy ended just one week earlier was only 2.4 percent. Researchers don’t yet know what magic happens in the 34th week, but they do know that women must be under the age of 30 to benefit from it. More information can be found here.
While we’re on the subject of breast cancer, let’s talk about men because they get breast cancer, too. As Patient Empowerment Network blogger and breast cancer survivor Marie Ennis-O’Connor noted in her October 19 post, Beyond Pink: The Other Side of Breast Cancer Awareness and Lessons We’ve Learned From Each Other, breast cancer is not gender specific. While men make up less than one percent of all breast cancer occurrences, says breastcancer.org, an estimated 2,550 men in the United States have been or will be diagnosed this year. And because men are not routinely screened for breast cancer, they tend to be diagnosed when the disease is more advanced; therefore, it’s important for men to know the risk factors, which can be found here. While breast cancer awareness still focuses mainly on women, more attention is beginning to shift toward men, even making it’s way to primetime television. The series premiere of the new ABC drama A Million Little Things introduces a main male character who is a breast cancer survivor. More information about symptoms, diagnosis, and treatment of breast cancer in men can be found here. Please, take the time to find out if you, or the men you love, have any of the risk factors.
There’s a new risk factor to be mindful of…your height. That’s right. Your height. As reported by the guardian.com, the taller people among us are more likely to get cancer simply because they have more cells in their bodies. More cells means more opportunity for mutation. Apparently, it’s true for dogs, too. Bigger dogs, bigger risks. In humans, height seemed to cause an increased risk for 18 out of 23 cancers, including melanoma, which had a stronger link to height than researchers expected. Since there’s not much you can do about your height, researchers suggest that you focus on other risk factors instead, by maintaining a healthy weight and not smoking. Learn more about how height affects your cancer risk here.
You might want to consider breakfast cereal, too, reports freep.com. There is a chemical called glyphosate, the active ingredient in the weed killer, Roundup, that is showing up in products that are made with “conventionally grown” oats, which includes a lot of breakfast cereals. The International Agency for Research on Cancer says glyphosate is probably carcinogenic for humans, but Monsanto, the maker of Roundup, maintains the product is safe. While some experts say the information isn’t cause for hysteria, it is a good idea to pay attention to where your food comes from and what might be affecting it. You can find more about the glyphosate content in foods and which foods are affected here. It’s best to stay informed about the potential risks and use your best judgement.
The same holds true for those of you taking blood pressure medication. medicalexpress.com reports that some blood pressure medications might be linked to an increased lung cancer risk. The drugs are angiotensin converting enzyme inhibitor drugs (ACEIs), and the risk is elevated for people using the medication for five years or more. Overall, the risk is low, but is notable because of how widely ACEIs are prescribed. ACEIs are very effective at treating blood pressure and, if patients have concerns about any potential cancer risks, they should consider the risks and benefits with their doctors. There is still a lot more to be learned about ACEIs and their connection to lung cancer. You can find out more here.
Whether you’re a tall person who eats breakfast and has high blood pressure or you have some other strange cancer risk, the main thing to remember when it comes to risk factors is to stay informed, because when you have knowledge, you are empowered and that’s what it’s all about.
The first time you ever heard the term “mental illness”, what did you think of? I can tell you what I thought of.
I was in the beginning of high school the first time I recall hearing this term. At the time, associated it with people who were unstable. I thought of people who were violent or adults who had tantrums or isolated old women who never left the house. I thought of mental illness as something that was permanent, something that individuals “had” and couldn’t recover from. Even though de-institutionalization was prevalent by that point, I still thought of people who have long stays at psychiatric wards and pictured them mumbling to themselves in a straight jacket.
Ironically, I was going through my own struggles with mental illness at the time. I didn’t call it mental illness then. I would go back and forth between feeling anxious and depressed, but I thought it was teen angst and aloofness. But was I mentally ill? My 16-year-old self would say “No way. I’m not crazy.” (Whatever “crazy” means…)
My teenage image of what an adult living with a mental illness might look like.
As I learned more about mental illness, my view of it changed substantially. By the time I was halfway through college, I realized that my anxiety and mood disorder had a significant impact on my functioning and that mental health existed on a much wider spectrum than I thought. My lived experience with mental illness was one of several factors that influenced me to study human behavior. But what about people who do not have the desire to learn about this topic? Are their impressions as biased, extreme, and inaccurate as the examples I mentioned above?
A mannequin represents a victim of crime on the street. Despite certain stereotypes, individuals with a mental illness are 10 times more likely to be the victim of a crime than the perpetrator.
Perhaps the stereotypical images discussed above are the first to come to people’s minds because they are the most extreme interpretations of what mental illness might look like. The hard truth is that the majority of mental illnesses are subtle. Somebody could be diagnosed with conditions such as schizophrenia, bipolar disorder, depression or anxiety and the rest of us would have no idea. In fact, over 40 million adults in the United States have a mental health condition. That is equal to nearly 1 in 5 people. And contrary to my 14-year-old imagination, the majority of adults with a mental illness are not violent, institutionalized, or home bound.
Mental illness affects children, adolescents, and adults from all walks of life, but this is not often talked about due to stigma. Although efforts to reduce stigma have made recent progress, it is not uncommon for the people who I have worked with to experience guilt and shame as reactions to a mental health diagnosis. I have heard story after story about their worries and projections. Would a mental health diagnosis alter their life in a frightening way? Would they have to take medication forever? Would they be able to work at a level that would allow them to meet their goals?
A man expressing worry and sadness, reactions that many people may have when diagnosed with a mental illness.
When new symptoms arise, it is reasonable to be concerned about how they may impact our quality of life. Yet, forecasting defeat can make symptoms of almost any mental health condition even worse. In fact, if is possible to utilize the information gathered about your diagnosis to make informed decisions about how to take care of yourself moving forward.
Something Doesn’t Feel Right…..
I think it is safe to say that we can all relate to having a physical illness or ailment. We have had upset stomachs, scratchy throats, or aches or pains that seemingly came from nowhere. All of us can relate to the feelings of helplessness and annoyance that arise when we want the condition to go away, but we have no control over when it will because we are unsure of what caused it and how to fix it. Some of us may have even been informed that there is no way to “fix” the ailment because we have something chronic, but that we can learn to live with it by managing the symptoms.
Now imagine that you are having symptoms, but they are emotional instead of physical. Picture struggling with a relentless sense of hopelessness, prolonged sadness, sudden episodes of panic, recurring flashbacks to a traumatic incident, or intense fear that others might be out to harm you. Like having an upset stomach or a mysterious pain, there could be a variety of reasons why you are having these symptoms and they are not always clear. And when we see a doctor for the weird stomach ache or sore throat that won’t go away, what does the doctor do? Ask questions: How long have the symptoms been occurring? Do they happen at specific times of the day? Do they happen after you eat? Then they will probably examine your throat or press on your stomach to examine your body further.
An experience that many of us are familiar with at the doctor’s office.
A similar process occurs when you seek consultation about a mental health condition. You tell a therapist, social worker, or psychiatrist the symptoms and life events that you have been experiencing, and they will ask a series of questions to help find the nature of your condition. The questions that these professionals ask are typically called bio-psychosocial assessments and tend to be quite comprehensive. Similar to when you visit a medical doctor, the treatment plan may not be clear after one session (in fact, in many cases it is not!) but it can offer a roadmap about what to do nest.
I’d like to be clear that not everybody who sees one of these professionals necessarily has a mental health condition that can be treated using the same biological model that applies to medical diagnoses. In many circumstances, the problem that brings someone to a therapist or social worker requires a treatment plan that has a higher emphasis on fixing social or environmental problems. Yet, these interventions are also based on best practices from previous research and can improve mental health outcomes. British author Johan Hari wrote excellent book named “Lost Connections” which gives several examples of what these interventions look like and how they can improve symptoms that were originally presented in a more clinical setting.
I have noticed that people have different reactions to mental health diagnoses than they do to medical ones. For example, when I was diagnosed with Panic Disorder it felt different from when I was diagnosed with Allergic Rhinitis. It was difficult for me not to view my diagnosis of Panic Disorder as some kind of moral shortcoming. Throughout the years, I have learned that viewing my diagnosis as a personality flaw would make it harder for me to come to peace with it and have the willingness to explore treatment options.
Creepy blurred photo of a person’s face and a furry hood. Panic attacks tend to escalate very quickly and sometimes the experience can feel very “blurry” as interpreted in this photo.
It is not useful, and not at all accurate, to attach guilt and to such conditions. I did not engage in any actions that resulted in me developing Panic Disorder. A combination of genetic predispositions in my DNA and social experiences I had early in life have influenced my brain to develop in such a way that I sometimes respond to situations with a disproportionate amount of fear and terror – often over a very short period of time. This is not a moral shortcoming, it is a combination science and learned behavior. I can learn to manage it though and work with therapists or peer groups to take steps to “unlearn” the behavior.
Now, let’s go back to that doctor’s visit we discussed earlier. Imagine how we might feel at the end of each of these visits. I can attest that after I receive a medical diagnosis, I am often relieved. Most of the time, I am informed of what the problem is, what medication to take, and what lifestyle choices I can make to relieve the symptoms of the condition. Even though the steps to treat it might be a nuisance, at least I leave knowing what to do and feeling a bit more empowered.
When treating mental illness, it is often difficult to make a diagnosis after one visit. Providers have to identify a diagnosis for insurance billing purposes, but after just one visit with a client that diagnosis is preliminary. It is inaccurate to stay that you will leave your first appointment with an explanation of how to vastly improve our symptoms, but the point that I am trying to make is that once an explanation is provided it can arm you with additional knowledge about how to manage your situation and put you in a position where you can make a choice.
Any time I needed to seek help for my mental health symptoms, I tried to view it as a learning opportunity. I would ask about the known causes, any research that has been done on it and what has been successful for others who have been living with it. I would also reflect on how the information that I obtained applied to my own situation and determined (sometimes with a provider and sometimes on my own) what the best next steps would be in my action plan.
For me, it was empowering and validating to be reminded that I was not alone. Like I said earlier, 40 million adults in the United States have a mental health condition. And there are forums on the internet, and sometimes in-person support groups, for many different mental health conditions where you can connect with other who are finding solutions. The more you know about the root of your distress, the more power you will have to manage the symptoms and make your own choice about the best next step. Mental health professionals can help with the evidence based guidance – but we are not experts on you – you are!
Challenges with This Process: And How to Stay Empowered Through Them
Mental health treatment isn’t always linear. If you need a medication to improve your mental health, you may need to try a few different drugs or different dosages before you find the right prescription that works for you. If you need to seek a therapist or support group, you may need to try different groups or providers before you find the right match. And you may go through mental health treatment, get better, and find that a month or a year or five years down the line, you need treatment again. There may not be a quick fix.
Sometimes treatment can feel like a bit of a puzzle. It can take several tries of piecing different approaches together before you feel whole again.
It is true that sometimes the dynamic between a therapist or psychiatrist and a help seeker can feel disempowering to the client. When working with clients, I have always tried the best I can to use the strengths perspective which focuses on a person’s assets and resilience, rather than their pathologies. It is important for practitioners to know that our communication style and view of the client as a non-expert of their own life can contribute to their feelings of disempowerment. Speaking from the experience of being on the consumer end of mental health treatment, I have always felt much more . empowered when I saw providers who used the strengths perspective.
Whenever I have felt disempowered, it has helped me to focus on what was immediately in front of me. When I have gone through episodes of worry and doomsday forecasts in my mind about things “never getting better,” I was able to get through it by putting thoughts of the future aside and engaging in a useful task that would give me an immediate sense of gratification. Enter….cleaning! It sounds a little silly, doesn’t it? Never in a million years did my feminist inspired brain think that domestic tasks would help me feel empowered. But in certain moments, they really did. I even tried some DIY cleaning ingredients which made it fun for me. It was kind of like a creative project. I would make something, use it to change the environment and feel a sense of accomplishment afterwards. Of course, recovery and wellness as a whole are not that simplistic. But there have been several times where a night of giving some TLC to my apartment helped ground me and remind me that my mind did not always have to be in the future and that I could enjoy simple tasks in front of me in the meantime.
Let’s Talk More About Empowerment
OK, so you were informed of your different treatment options and have made a decision about what you would like to do. How can the sense of empowerment you felt when you made that choice stick with you as you go through the process of recovery?
A Canadian study that was facilitated in 2001 explored factors in the lives of adults with a mental illness that influenced the degree of empowerment felt in their lives. Every participant was in some kind of mental health treatment (either therapy, medication management, a peer support group, or a combination of more than one treatment method). The study revealed that the two factors below had a significant influence on empowerment:
Personal motivation: When consumers of mental health services were able to take more initiative in making choices, it resulted in improved confidence, skill development, and greater sense of control over their lives.
Supportive Relationships: Consumers of mental health services reported feeling more empowered when their personal and professional relationships were supportive and fair. This resulted in increased participation and involvement in the community, particularly if they were able to connect with a community of peers who they saw on a regular basis.
I have actually witnessed the peer support models become increasingly common in the past decade and know of individuals who have discovered a sense of purpose once they become involved in peer support. These kinds of groups and relationships have the potential to offer mental health consumers a sense of connection that may be difficult to find elsewhere.
Giving and receiving mutual support to other with a mental illness can provide empowerment and a sense of purpose.
Another way that having a mental health diagnosis can result in empowerment is through resilience. Those of us who have lived with a mental illness have often been placed in positions where we have had to struggle to find new or different ways to cope with life’s stressors. It has been my experience that surviving through the moments where the mental illness is at its worst forces us to learn skills to help us persevere. Even though I felt hopeless and vulnerable in the midst of my worst mental health crises, I always came out of each of them feeling a little stronger and a bit more confident in my capacity to grow through adversity. And some coping skills I have learned as a result of struggling with anxiety have resulted in positive changes in my life that I otherwise may never have experienced.
For example, I had no interest whatsoever in meditation before my anxiety hit its peak in my early twenties. I tried meditation, with some skepticism, after some peers and providers had recommended it to me. Meditation ended up benefiting me so much that I continued to practice for long after my symptoms improved. As a result of practicing meditation, I have become more patient, more present, and more appreciative. Had struggling with mental illness not given me the motivation to try new coping skills, I may have never discovered this practice that has enriched my life.
I have heard others share similar feedback about exercise. Several of my peers specifically mentioned running as an activity that helped them with things such as “clearing their head” or “setting their perspective for the day. One challenge with exercise though, is that it can be hard to start particularly when you are having symptoms of depression. These symptoms can suck away your energy level and motivation.
When discussing the benefits of early morning exercise, Jen mentions a visualization activity that can help counteract some of the self-deprecating thoughts and beliefs that come with depression. Our thoughts can sometimes trap us into believing that certain things are not options. I have certainly gone through this before. It sounded a little bit like this “There is no way I can get up at 6 to hit the treadmill tomorrow. I’m not going to have the energy.” And then I literally pictured myself hitting the snooze button until 7:15.
Changing our narrative, and the way we visually see the narrative playing out, can be useful. Psychologists have found that the self-fulfilling prophecies that occur during depression can create a cycle that is difficult to get out of. Visualizing yourself overcoming challenges has the potential to break this cycle.
Meditation reduces stress, improves concentration and increases self-awareness, something that is particularly useful when managing a mental illness.
We are all familiar with the stereotypes of mental illness. Advocates, consumers, and providers across North America have been fighting to challenge these stereotypes and provide correct information about mental health. Stigma against mental illness can often deter people from seeking treatment and may cause them to view mental illness as a personal weakness rather than a treatable condition. This perspective can be reframed by viewing a mental health diagnosis as a framework for establishing a treatment plan. Some mental health consumers may be able to shift this perspective on their own, but providers and the public need to also take accountability. Stigma is created by public opinion. If the public could have more empowering and empathetic views toward people who have a mental illness, it could lead to a paradigm shift that could help more people see diagnosis as a blueprint rather than a bombshell.
Ashley Owen Santangelo is a Licensed Master Social Worker in New York City and has been an avid writer since the age of 7. Ashley majored in English with a concentration in Creative Writing during her undergraduate studies at the State University of New York at New Paltz. During her time at SUNY New Paltz, Ashley had several personal experiences with mental health which drove her desire to pursue social work in her graduate studies.
After graduating from Hunter College School of Social Work in New York City in 2012, Ashley has worked in various clinical capacities at well known institutions such as the Mental Health Association of New York City and New York University. Ashley is happy to contribute her expertise on the mental health field and emotional wellness to Jen Reviews.
https://powerfulpatients.org/pen/wp-content/uploads/mental-health.png600600Ashley Santangelohttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngAshley Santangelo2018-10-29 17:48:342019-09-02 12:28:31A Blueprint When Feeling Blue: How A Mental Health Diagnosis Can Be Empowering
This is the last installment in our three-part series profiling breast cancer survivors. In Part II, the women gave insight into the importance of their mental health and their own attitude as critical components of care. They also shared some of the ways in which they coped with cancer. Today, the women talk about the possibility of recurrence. So, we pick up with the final stage of Shannon’s preventive measures. Based on her history, she knows her cancer can come back, but she wanted to do everything she could to prevent it.
Shannon’s treatment didn’t stop at reconstruction. She opted to have an oophorectomy, which meant she had her ovaries and fallopian tubes removed. Remember, her moms’s cancer had returned and been terminal, so Shannon wanted to take every preventive measure she could. “My fear and my worry is that hers came back 16 years later and she died at 65. If the same thing happened to me, I would die before I’m 60,” says Shannon. Her breast cancer diagnosis meant she was at higher risk for female cancers and she wanted to do whatever she could to have as much time as she could. “I’m relatively young,” she says. “I wanted to give myself as long as I could.” In order to have the procedure, Shannon had to take medication that would put her into menopause and the side effects that came with menopause affect her quality of life, so she says she goes back and forth on whether or not she would do the oophorectomy, if she had it to do all over again.
Although she did have melanoma a couple of years ago, Tina has been 27 years without recurrence of breast cancer. “I didn’t really feel safe until five years out,” she says, but adds that you never really know if it’s coming back, and that you should always be vigilant about checking for lumps. There is a risk of late recurrence, i.e. breast cancer that comes back more than five years after diagnosis and treatment, and it is more likely if it was later stage when first diagnosed, and if the cancer was HR positive.
Like Tina, Betty also had a second cancer. Her colon cancer was discovered in 2009 and her doctor estimated that it had been growing for ten years, but because of where it was growing in relation to the colon wall, the tumor was able to be cleanly removed and no treatment was required. Because her breast cancer was ductal and not in the tissue, and her doctor was able to get very clean margins, Betty says she doesn’t worry about it returning. “I’m more afraid of the colon cancer returning,” she says.
Diana has been nine years without recurrence, but she says, “My guard is always up.” Maybe it’s because her mother and grandmother both had breast cancer, and, despite being BRCA negative, she believes her cancer is hereditary. Shannon feels the same way and says she believes 100 percent that her cancer is genetic. The genetic testing available is limited compared to the number of genes in the human body so, Shannon says, “There’s a long way to go.” And, while it’s early for Shannon to think about recurrence, she can’t help but consider it. “I don’t want to spend every day thinking about cancer. I don’t want that to be my life,” she says, “but it is in the back of my head.” Not knowing how the cancer might come back makes Shannon especially uneasy because she doesn’t have a plan for it.
When Meredith finished treatment, her doctor said he didn’t expect to see her back for recurrence. The odds were in her favor that she would remain cancer free. Meredith, like Betty, says she got the best cancer to get if you’re going to get cancer, but unlike the other ladies, Meredith was not expecting to get cancer. She didn’t have the same family history. Her only red flag was that she had an aunt that had ovarian cancer and she thought maybe her grandmother had breast cancer when she was 90. Meredith was young, she had three small children, and breast cancer was not on her mind. In fact, she was so sure she didn’t have it, that she took her 18-month-old daughter with her when she got the results from her lumpectomy. But, Meredith, who is also BRCA negative, did have cancer, and while her cancer was ductal, it was bigger than it should have been, and there was also a spot on her other breast that needed to be watched. Wanting to be proactive Meredith opted for a double mastectomy with reconstruction. She also had chemotherapy, because the cancer was found in a lymph node, and she lost all her hair. While she possibly could have gone without radiation, she opted for it. Again, she wanted to be aggressive and as proactive in her treatment as possible. She wanted to make sure her cancer was gone.
About a month ago, Meredith found another lump under her arm. She had a scan that was all clear except for the spot where the lump is located. She and her doctors are hoping it is just scar tissue, but she’ll have a lumpectomy this week and then she’ll wait for the biopsy results, which she is guessing will take several days. “The waiting is the worst,” she says. Liz, as a caregiver, felt the same way about waiting, “The worst part of all of it was waiting for the results.”
Tina, who also had young children at diagnosis, recalls that she just wanted to live long enough to raise her children. She says she found it difficult to accept the idea that she might die before her kids were grown. That thought is clearly on Meredith’s mind as well. “I remember saying, ‘Just give me five more years,’ and now it’s been seven years, and I’m saying, ‘Just give me seven more years,’ but no amount of time is enough,” she says. You can hear in her voice that she’s trying to be brave, and she says, “Hopefully, it will all be fine,” but it’s scary because, even though Meredith got the best cancer you can get if you’re going to get cancer, it is still cancer.
Anxious to hear Meredith’s results? We are, too, and as soon as she gets her results, she’s promised to follow up with us. We’re hoping for good news, and we will let you know as soon as we can.
Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.
https://powerfulpatients.org/pen/wp-content/uploads/ptprolfileIII.png600600Jennifer Lessingerhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngJennifer Lessinger2018-10-26 15:15:122019-09-02 12:32:03Patient Profiles: Breast Cancer Part III
“Ask the Expert” session with CLL specialist Dr. Jeff Sharman from Willamette Valley Cancer Institute and Research Center.
Recorded on: September 27, 2018
Greetings to this live Ask the Expert program for those of us dealing with CLL. I’m Andrew Schorr from Patient Power. Welcome to this Patient Empowerment Network program with financial support from AbbVie and Pharmacyclics. Thank you so much for being with us.
We have a wonderful expert with us today who is so knowledgeable about this, and that is Dr. Jeff Sharman. Dr. Sharman is the medical oncologist, of course, one of them at the Willamette Valley Cancer Institute and Research Center in Oregon. He’s also the medical director for hematology research at the US Oncology Network with oncologists all across the country. Jeff, welcome back to our program.
Thank you so much. It’s nice to be here today.
Okay. Let’s get started. We have a lot of questions coming in, and if you, our viewer, have an additional question send it to firstname.lastname@example.org and we’ll cover as much as we can in the next half hour.
Here’s a question that came in based on news events that people follow related to CLL, and this is from William. He says, I heard there’s a new drug approved for CLL, duvelisib. Can you tell more about this? Where does it fit in in the CLL landscape?
Absolutely. Duvelisib is another PI3 inhibitor. It has considerable molecular similarity to idelalisib, which was the first in class medication approved amongst the PI3 inhibitors a few years ago. This molecule has considerable both biochemical similarity, structural similarity but also quite a bit of clinical similarity. So when you look at the patient population in which it’s approved, similar clinical trial designs led to approval, and so as a result it’s sort of in the third‑line setting that you could use it.
It is a‑‑the drug class is a sort of the whole PI3 family of which there’s a growing number. There’s idelalisib, umbralisib is in late‑stage clinical trials. Copanlisib is approved in follicular lymphoma but not CLL. And as a family they tend to be utilized less frequently than the BTK inhibitors such as ibrutinib and to some degree less frequently than venetoclax, as well, the Bcl‑2 family, and that has to do with some of the side effects, that there is, a frequency of diarrhea, LFT abnormalities and so forth. So it follows on the heels of idelalisib, and I would say has more similarities than differences.
Okay. Let’s go on. You mention about side effects. People ask about that all the time, so here’s a question from Judy. She says, I’m not able to get an answer from my husband’s oncologist regarding ibrutinib and severe body cramping. Have there been any reports showing this is a possible side effect from ibrutinib?
Absolutely, it is. It is‑‑well, absolutely possible, let’s say that. It actually is what I would say one of the most common side effects that I encounter as a limitation for ibrutinib. The medical term for it is arthralgias, which is sort of translates into joint pains. Sometimes you’ll also see actual cramps or spasms. I’ve had patients’ hands lock up when they’re driving sometimes, which can be a little bit concerning.
There is I think considerable question in the field. There are differences amongst thought leaders on this as to whether‑‑how to best manage it.
There’s some studies that suggest that lower dosages may‑‑after a patient has been on ibrutinib for a length of time you may be able to get away with lower dosages. Those pieces of clinical trial data are not as large and not as well validated, so I think it’s still in the hypothesis‑generating mode, but there’s some data that suggest you could do it. And if the choice was lower dose of ibrutinib or no dose of ibrutinib, I would probably go with a lower dose.
The other potential solution now is acalabrutinib, which is a second BTK inhibitor approved. It is approved by the FDA for mantle cell lymphoma. However, a lot of the clinical trials are in chronic lymphocytic leukemia, and there have been studies that looked at patients who have limited tolerance of ibrutinib, and in many cases they were able to go on acalabrutinib without a recurrence of the same side effects.
So that’s another possibility. It is in the NCCN guidelines that for those patients who have intolerance of ibrutinib consider acalabrutinib. So whether it’s dose reduction or drug substitution, those are sometimes two ways that I use to get around that scenario.
Okay. Now, we should be clear that acalabrutinib is not yet approved for CLL. Does it seem like that’s forthcoming? I mean, nobody can guess the FDA, but.
Yeah. So the clinical trial that will lead to approval, presumptive approval, was a head‑to‑head comparison against investigators’ choice of bendamustine rituximab or idelalisib rituximab, and that study is fully accrued and waiting for end points.
And I think that the feeling would be that should be a positive test and that it would eventually get CLL approval. Most of the studies have been done in CLL. It’s just the mantle cell indication came along more quickly.
Okay. All right. A lot of people worry about other side effects like fatigue, of course, in CLL. So here’s a question from Patty. She says, I’ve been taking 60 milligrams of Vyvanse, which is often used for ADHD, for extreme fatigue that she struggles with. And she says her blood pressure is elevated, and she’s read that that can be a side effect of Vyvanse. Are there any new or additional medications that can be used to treat fatigue without the worry of high blood pressure?
The way I would approach that situation, fatigue‑‑what I don’t know about this particular patient, is this fatigue that is attributable to the CLL or fatigue that’s attributable to medications?
CLL fatigue is probably one of the most bothersome sort of clinical realities, and for some patients even though they may not meet other treatment criteria such as rapid rise in white blood cell counts, systematic (?) inaudible adenopathy, marrow dysfunction. Sometimes fatigue is so debilitating that you need to do treatment for it. In the 2008 guidelines, fatigue was one of the‑‑it was like the sixth indication for when you treat CLL.
And I’ve seen some patients, you know, one immediately jumps to my mind. He’s clinician himself, very busy individual, likes to surf and so on and so forth, but his CLL left him so fatigued that he had to cut back on clinical work and so forth. And getting his CLL under control really made a huge difference for him. So in the setting of CLL I think that you may wish to consider talking to your doctor about going ahead and treating.
I find those are difficult, difficult discussions because if you don’t have the more classic indications for therapy it’s hard to know. Because fatigue can be a number of things. It can be thyroid dysfunction. It can be hormone imbalance with other hormones. It can be nutrient deficiencies and so forth.
It could be having three kids.
Yeah, I know. Lots of things.
Here’s another question from Bob. Bob wants to know, will approaches likely change for first‑line treatment, for instance venetoclax, or Venclexta, within the next two years? You have ibrutinib first line.
You have FCR that’s been around. You have idelalisib I think could be used first line.
Actually, idelalisib is specifically contraindicated for first‑line therapy because of side effects.
Okay. So what about first‑line therapies, Jeff? Where are we there and what’s coming?
Yeah, so you’re kind of in this bind currently where your choices are chemoimmunotherapy or targeted therapy, and both of them have strengths and weaknesses. The strength of chemoimmun0therapy is that you give treatment for a fixed duration of time, and then you get treatment‑free interval that in properly selected patients should be measured in multiple years.
I went 17 years.
Yeah, absolutely. So effective therapy in appropriately selected patients. Now, when I say appropriately selected patients, that does get into some of the nuance about FISH changes and IGHV mutation, and I will tell you even amongst thought leaders in the field there’s some debate as to where you draw the line. Some patients are more suitable for ibrutinib either because of co‑morbidities or wish to avoid chemotherapy, but at least as of today ibrutinib is something you start and then stay on indefinitely.
And per the prior question, some patients have difficulties with that, whether it’s arthralgias or bruising bleeding and so forth. The medication you made mention of I think is the frontline therapy that may have the most profound impact on treatment selection in the next two years.
So the German Research Group, which is really just absolutely one of the best out there, have fully enrolled a clinical trial of obinutuzumab venetoclax versus chlorambucil and obinutuzumab, and I have to believe that that is going to result in a superior outcome for the venetoclax arm and that we will have the combination of obinutuzumab venetoclax for front‑line setting.
And what’s really appealing about that is that is one year of treatment and then treatment is suspended and stopped. And though we haven’t compared that to more traditional BR or FCR, I think it would be a highly effective regimen. We are currently conducting a study in the United States in our research network looking at the combination of obinutuzumab and venetoclax, and what I like about our study is we give‑‑for the listeners who might not be familiar with venetoclax, starting venetoclax is a little bit clunky because it works so quickly we have to be careful about a condition called tumor lysis syndrome, which is if you kill too much cancer cells too quickly that can cause some dangerous conditions, and venetoclax does do that.
And so what we’re doing is we’re giving two months of obinutuzumab and sort of getting rid of the bulk of the CLL and then starting the venetoclax hopefully under much safer conditions because, you know, in the Pacific Northwest we would say you can’t have forest fires if you don’t have any trees. So if we get rid of all the CLL or a substantial fraction of it somebody is less likely to have tumor lysis. So I think that’s the approach that is probably the next up in frontline.
The one other thing that could potentially change is acalabrutinib has conducted a three‑arm study‑‑excuse me, Acerta with acalabrutinib, where they give‑‑it’s a three‑arm study with either chlorambucil Gazyva, acalabrutinib or acalabrutinib with Gazyva. And so does the addition of a C‑20 antibody make BTK work better, remains the question outstanding.
All right. Let me just explain things to people. I’ve been around this for a long time and Jeff deals with these acronyms all the time. So, first of all, Gazyva is the same as obinutuzumab.
Thank you, yes.
It’s an infused CD20 that’s targeting the CD protein on the B‑cell, the bad guy, and it is sort of I don’t know if you’d describe it as a more powerful version but it followed from Rituxan or rituximab that many of us had. So the idea is you have an infused therapy for some length of time, and then you may have an acalabrutinib with it or you may have a venetoclax or Venclexta with it. Get I get it right, Jeff?
Yes. And if I just had one other comment. I think there are a lost questions and certainly some very compelling data about the combination of a BTK inhibitor such as ibrutinib with a Bcl‑2 inhibitor such as venetoclax.
Two pills, yes. And I think the preliminary data really looks extremely encouraging.
The challenge with that approach is it’s not approved in that combination and probably not going to be approved in the next two years unless the FDA does something that maybe I’m not anticipating at this point. That clinical trial that compares that to an existing standard is really only just getting off the ground now.
Okay. All right. Let’s buzz through some others. So John writes in, please compare purpose and benefit differences for FISH testing versus next generation sequencing. So maybe you could explain them too.
Absolutely. Thank you for the question. It’s one that I think is often very difficult to comprehend.
So a little bit of history here is that we’ve known for a long time with that patients with chronic lymphocytic leukemia have a pattern of common chromosome gains or losses, and we generally pay attention mostly to five separate categories.
There are some others that people sometimes look at, but ranging from sort of worst to best, worst is having a loss of chromosome 17p and P stands for petite arm, so part of the short arm of chromosome 17 is lost. 11q, Q stands for the long arm of chromosome 11. And then you have normal chromosomes or the addition of an extra chromosome 12 or the loss of a portion of chromosome 13 that kind of goes from worst to best. And that is very different than actual mutations in genes. So these are wholesale losses of large clunks of chromosomes.
And if you look at 17p the reason that 17p is bad is because there’s a particular gene there that’s very important called TP53, and you can actually have a mutation in TP53 without the presence of a chromosome loss. And so next generation sequencing looks at a host of additional genes that really until the last three to four years we didn’t know have the significance that they have. So TP53 is probably the most important, but you’re also seeing things such as SF3B1, NOTCH1, FA1. There are a variety of them that are out there. Some are better understood than others, and I think to some degree we’re still as a field even trying to figure out how best to integrate these into our clinical practice.
Okay. So would you recommend for the typical CLL patient that they have FISH testing, which tells you about the chromosomes, right?
And when do we need to do genomic testing to see with whether if any of those genes you just rattled off?
Yeah. So I can tell you about my own personal practice on that. I do think that the field, as I indicated before, is still trying to digest this, and a number of those specific mutations there isn’t necessarily super robust consensus as to when is the best time to draw those. So I’ll explain how I’ve thought through it, and if that resonates with you.
So my question in the previously untreated patient is whether or not this patient is suitable for chemoimmunotherapy. Previously I said appropriately selected patients get very long duration responses. I don’t want to give chemoimmunotherapy to a patient who is not going to get a sustained benefit.
If I anticipate that I’m only going to get 18 months benefit or two years of benefit, it is not worthwhile in my mind going through the chemotherapy to get that. I would rather put those patients on a tyrosine kinase inhibitor.
So my first stratification is the IGHV mutation status, and I would say in general if somebody’s mutated, which is the more favorable form, I would tend to err more on the side of chemoimmunotherapy for those patients. For those who are unmutated, which is the bad one, I would tend more towards targeted therapy. These aren’t totally black and white.
But my next level of stratification is FISH. So if you’ve got a bad FISH finding even if you’re in that favorable category I strip you out from the chemotherapy group.
So like if you had a 17p deletion, those chromosome deletions?
Yes. So if you’re mutated, which you think is good, but you also have a 17p, then I wouldn’t give that individual chemoimmunotherapy.
So if you have good IGHV, good FISH, good functional status and I’m thinking about give you FCR, that’s my final check is let’s make sure there’s not something lingering underneath the surface here that I don’t know about. So that’s where I check it.
Now, in the relapsed/refractory setting it is more the norm that those patients are almost all going on novel agents where those mutations are sort of a little bit less salient, so I don’t necessarily check that. However, I do recheck FISH with successive lines of therapy because that certainly can evolve. And to make things even a little bit worse now for somebody who has been on BTK, we need to think about BTK mutations and whether or not that patient might be suitable for a second‑ or third‑generation BTK inhibitor that can get around that.
Okay. And the genomic testing, when do you do that?
Well, so genomic testing is looking for those smaller mutations that don’t show up on FISH.
So that’s my final break point before I would give somebody chemoimmunotherapy. But I will tell you, there are opinion leaders out there who will argue that chemoimmunotherapy is dead and shouldn’t do it.
Right. There are.
I’m in the camp that thinks there’s still purpose and value in doing that in appropriately selected patients.
Okay. Let’s get to some others. So Grant said he was diagnosed with a double diagnosis of diabetes and then, as he had additional testing, voila, he also had CLL. So he’s currently able to control his diabetes, and he’s in watch and wait for CLL. Is there any advice for me going forward with these two conditions? Diabetes and CLL.
It‑‑so I guess my question in such a circumstance is how is that CLL behaving. If he has a molecularly favorable CLL and he’s on watch and wait and things are simmering along, it may very well be that his diabetes poses a greater threat to his overall health than the CLL.
In contrast, somebody with an unmutated 17p deleted CLL, it’s the CLL that’s going to be more dangerous. Fortunately, the treatment interactions don’t overlap all that much. Sometimes with chemoimmunotherapy we give steroids, and that can be problematic for patients with diabetes, but I would manage them by and large independently.
Okay. We’ve gotten several other questions. Sharon, we got yours and Jason. They were asking about first line with ibrutinib, and I think we spoke about that and other choices that may have a different side effect profile if ibrutinib has a problem. And also Sharon had written in about she’s in this watch and wait and she wonders about FCR, and I think we can hear from you that FCR and maybe BR in some cases, which is this chemoimmunotherapy approach, still has a place in your mind. So, Sharon, stay tuned.
Lucy wrote in. She says, given the 17 (?) (p53) deletion what role does that play in determining the beginning of treatment for the CLL naive patient, and you were just saying probably not FCR or BR.
Yeah. Boy if somebody had a 17p deletion I would strongly advise against traditional chemoimmunotherapy. I think it can actually be more harm than good in some cases.
There is a more subtle point though that I would jump onto, which is what factor does it play in first‑line therapy. It’s not so much the agent. Some people feel like because they’ve got a 17p they need to jump into treatment sooner rather than later.
I will tell you I have several patients with 17p deleted CLL that I’ve been able to watch for years and years and years without treatment. The indications for starting therapy really remain the same. If I see somebody clearly heading towards treatment with a 17p I may start them a little bit earlier, but again some of these folks can be watched and wait quite well.
Okay. You’re a director of research, and we’re starting to hear about CRISPR or gene editing.
So do you think this gene editing will play a role in CLL?
Hoo, boy. You know, I think that probably dovetails with the question you didn’t ask, which is about CAR‑T cells. I think CRISPR, for members of the audience who may not be familiar with it, is a highly efficient, highly directed way of making genetic manipulation within cells,
and with a lot of the gene therapy that’s been done over the years we sort of randomly insert genetic material into cells to sort of reprogram them. That’s sort of the classic way of doing gene therapy. The problem with that is there are parts inside the genome that don’t like to be broken, and so the field really was set back a number of years when there were some early cases of leukemia caused by gene therapy.
And so what CRISPR does is it does allow you to make very targeted genetic modifications so that you can precisely put in new genetic material sort of wherever you want it. And I think that in the context of CAR‑T therapy there’s now goals to make it much more off the shelf than this sort of highly manufactured thing, and that’s where I would see CRISPR having the most likely early role.
Okay. So CAR‑T, chimeric antigen receptor T‑cell therapy, taking a virus, I think, and combining it with stuff for your T‑cells, targeting your CLL. So Lynne just asked, she’s 71, would somebody older like that‑‑tomorrow is my 68th birthday, folks‑‑would we be candidates for CAR‑T should we need it?
Well, I need to articulate some of my limitations as a community practice oncologist, thus far the CAR‑T research has been sort of in the exclusive purview of academic centers, so I haven’t had the chance to do it yet. That having been said, we are working with a variety of sponsors to get such a program up and running.
However, I will say there’s a lot of enthusiasm in CLL because the original New England Journal of Medicine paper that described CAR‑T was done in both pediatric acute leukemia and adult chronic lymphocytic leukemia, and it is now approved by the FDA for the pediatric ALL, acute lymphoblastic leukemia. It is not approved for CLL. And part of that‑‑there’s a lot of reasons why it doesn’t work as well in CLL as it does in other diseases, and I think that the‑‑it’s okay that this is moving a little bit more slowly in the CLL field because I think we’re getting a lot of benefit of accumulating knowledge in how to make it work best in CLL. I think it will become an important therapy in CLL.
Keep in mind that the toxicity of chimeric T‑cell is significant, and the possibility of neurotoxicity or this syndrome that looks a little bit like sepsis that’s not sepsis but it looks like it in a lot of ways, what we call cytokine release syndrome make this a therapy where caution is advised.
And so if it’s something you’re thinking about I would say go get yourself seen in your very specific circumstances with somebody doing this in research studies and decide if it’s right for you.
Okay. And we’ll have‑‑in other programs we’ll talk about CAR NK research that’s going on. Lot to talk about, maybe at ASH, folks. Dr. Sharman will be at the American Society of Hematology meeting, the ASH meeting here in San Diego in a couple of months. We’ll have coverage from that as these new areas come out.
Now let’s go back to the basics before the end, Jeff, and this that is flu season coming up.
And there’s also a shingles vaccine. And also some people related to hepatitis B.
What are you telling your patients about vaccines? My friend Jeff Folloder said somebody at MD Anderson had them maybe getting two flu shots.
So first of all, flu shots, and do we need more than one? And what about these other shots?
Yeah, so starting with flu I would encourage all my patients CLL patients to get flu shots. The response is nearly universal. Everybody always says, well, I got a flu shot and I still got sick. A flu shot does not prevent all illness. Flu prevents flu. And patients with CLL get more complications from flu because their immune system has a cancer in it. So CLL is a cancer of the immune system, so to whatever extent you can give yourself a head start to fight off flu I would encourage patients to do so.
More than one shot?
Well, so I will say that patients with CLL generally have less of a response to a flu vaccine than somebody without CLL.
So you don’t get as much protective benefit if you have CLL as somebody without it. I don’t think, at least, I’m not familiar with data that says two flu shots are better than one. It may be out there and I’m not aware of it, but I mean I could understand why you might. It at least biologically makes sense.
And the shingles vaccine?
Yeah, so very few clinic days go by where I don’t curse shingles at least once. For anybody who has had shingles you know it can hurt really badly, and there is this condition called post herpetic neuralgia, which is a sort of a lingering pain syndrome that can go on for years for patients who have had shingles and can be a life altering pain. And so, again, I think whatever head start you can give your immune system it’s worth doing.
And I guess the reason why I curse shingles so frequently is because it does seem to go part and parcel with lymphomas and CLL. Again, you have a cancer of the immune system. The immune system doesn’t work as well, and, boy, I can’t count the number of times where somebody gets shingles just as their CLL is acting up and then it delays treatment, or somebody is going through treatment with a lot of pain as a result.
So you’re not worried about the vaccine?
No. Not only am I not worried I highly encourage it. But I would point out that the old vaccine was a live virus, and there were problems giving that to patients with CLL. There is a new dead virus, Shingrix, that’s in short supply.
Okay. Well, we’re going to wrap up. I want to just help everybody understand what I alluded to a minute ago, the world series of blood cancer‑related discussions where a lot of data, and, Jeff, you may have data presented there, is the American Society of Hematology meeting which is near me in San Diego in December and about 30‑, 40,000 people come and discuss all this.
So stay tuned. We’ll be doing programs from there, and we’ll bring you updates. Dr. Jeff Sharman, thank you so much for being with us once again.
My pleasure, Andrew. Thank you for your time.
All right. And this is what we do. Thanks to the Patient Empowerment Network so devoted to this. We’re happy to help from Patient Power, and thanks to the supporters for this program. They had no editorial control, but they believe in education. That’s AbbVie Incorporated and also Pharmacyclics.
I’m Andrew Schorr. Remember, knowledge can be the best medicine of all.
Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
https://powerfulpatients.org/pen/wp-content/uploads/Ask-the-CLL-Expert.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2018-10-25 15:04:052019-09-02 12:28:30Ask the CLL Expert - Dr. Jeff Sharman
In the first part of of this three-part series, you were introduced to Betty, her daughter, Liz, Shannon, Tina, and Diana. You learned that women who are diagnosed with breast cancer are not really all that surprised to get a diagnosis. They are often expecting it. Having breasts is a risk factor, and women have breasts. In today’s installment, you’ll meet Meredith. She wasn’t expecting to get breast cancer. But, before we meet her, we’ll pick up where we left off in part one: the matter of hair loss and chemotherapy.
Whether or not a survivor lost her hair during cancer treatment, it’s one of the first things she says about her experience. Shannon even lost her eyelashes and they never came back. She says she knows it’s a little thing, but it still bothers her. Betty, didn’t lose her hair. Like a growing number of women, she did not have to have chemotherapy. She says avoiding chemo made a huge difference in her experience. At the time, Betty was receiving treatment at a research hospital, and there was a test available to her that would determine how beneficial chemotherapy would be in treating her cancer. She was told that if she scored between a one and a 19, she would not need chemotherapy. Betty scored an 18. While she had to pay for the costly test out of pocket and wait for insurance to reimburse her, she says it was worth it. “It was so helpful,” she says. “Because of what chemo does to your body, you don’t want it unless you need it.” Side effects from chemotherapy can include anemia, diarrhea, fatigue, fertility issues, hair changes/loss, memory loss, neuropathy, menopause and menopausal symptoms, mouth and throat sores, nausea, vaginal dryness, vomiting, bone loss/osteoporosis, heart problems, and vision problems. The test Betty had is now being more widely used and, as you may have read on the Patient Empowerment Network blog in the June Notable Newshere, researchers have learned that 70 percent of women don’t need chemotherapy when they have the most common type of early-stage breast cancer, with low and moderate risk of recurrence. The test looks at cells from a tumor biopsy to determine what is known as a patient’s recurrence score. Patients are scored between zero and 100, with zero being the lowest risk of recurrence. Researchers now know that women who score less than 25 do not necessarily need chemotherapy.
Betty also did not need to have a mastectomy. She had a lumpectomy followed by intraoperative radiation therapy, a 30-minute procedure that involves surgically placing a ball of radiation in the spot where the tumor had been. The procedure meant that Betty only had to have a single radiation treatment, and it helps reduce the side effects of radiation. Betty was eligible for that form of radiation in part because of the size of her breasts. She says she told the doctor, “I’ve been lugging around these big things my entire life and they are finally paying off.”
The intraoperative radiation was another benefit of being at a research hospital. At the time of Betty’s treatment, the procedure wasn’t being widely used and wasn’t available through her local doctors. Receiving treatment at a research hospital also made a difference in Diana’s care. She recalls going in to her local doctor’s office for her test results, and no one in the office would make eye contact with her. Then, when the doctor came in to see her, he told her she had breast cancer, that he wanted to treat it right away, that he’d see her next Tuesday, and then he left the room. Diana says she was left there shaking. “He has a heart, but he didn’t show it,” says Diana, who then went to a research hospital for a second opinion. Her new doctor was much better, she says, and adds that the shoulder of his lab coat was always dirty from the smudge of make up left behind after his patients hugged him.
The importance of good doctors that you are comfortable with seemed to be one of the critical components of care to all the women.They all talked about how much they liked and appreciated their doctors. “A really good physician realizes psychological and spiritual care are just as important,” says Tina, who sought the services of a psychologist after her treatment. She was struggling with anxiety and depression and found that the counseling really helped her to work through her emotions about having cancer, which emphasizes another, perhaps the largest, critical component of care during treatment: emotional and mental support and health. Diana says she found support online and emphasized the importance of staying positive through treatment. “Count your positives,” she says. “That is the key.” Along the same line, Betty says, “The number one thing is attitude.” Actually, she and Liz say “attitude” in unison, and Betty adds, “I think attitude is a big piece of it.” Meredith Cronin who was diagnosed at age 37, says “Attitude is everything.” Meredith, who had three children under the age of six when she was diagnosed, says she understands how easily you could get depressed as a cancer patient. “I always say that I felt blessed that I was young and so busy that I didn’t have time to be depressed.”
Shannon, who was accused of being negative because of her detailed planning to get breast cancer before she actually had breast cancer, says she wasn’t negative; she was realistic and it was that take on it and her preparation and planning that helped her maintain emotional balance.“It didn’t affect me emotionally as much as I think it would have,” she says. Shannon coped through research and attention to details, and she describes her experience in the kind of detail that makes you think she’d just had it done yesterday rather than three years ago. Betty used a different method of coping and says she’s been able to let a lot of the experience go. “I don’t dwell in that place,” she says. She and Liz also found a lot of humor in the experience. The clickity-clack of someone’s shoes, Betty’s preoccupation with cutting out recipes from a magazine, or the ridiculousness of what must have been an excruciating procedure, were all fodder for coping. It’s not that Betty doesn’t take cancer seriously, but she was better able to cope with the diagnosis by finding humor in the situation. “We laughed through our tears,” she says. Liz says that early on in the experience, they imagined the worst possible scenario, which made handling what really happened more doable. The ways of coping with cancer are as varied and vast as are the treatment options.
Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.
https://powerfulpatients.org/pen/wp-content/uploads/ptprolfileII.png600600Jennifer Lessingerhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngJennifer Lessinger2018-10-24 16:27:482019-09-02 12:34:32Patient Profiles: Breast Cancer Part II
It’s October and the pink frenzy is in full force. Breast Cancer Awareness Month (BCAM) is impossible to miss given the pink ribbon avalanche that arrives each Fall. While there is no denying that BCAM has played a significant role over the past two decades in raising public awareness of breast cancer, there is nevertheless growing criticism of its off-balance approach to awareness-raising, with many key messages becoming lost in a sea of “pink-washing.” Interestingly, some studies have even found that pink branding may actually lead the public to take breast cancer less seriously.
“The biggest issue I have with Breast Cancer Awareness month is that it’s not even really awareness,” writes Elizabeth McKenzie, who was diagnosed with breast cancer in 2012. “Awareness is mindfulness of all aspects of breast cancer, which to a certain respect, is different for all of us, based on medical differences in disease processes, treatment access, and personal, social-emotional and cognitive processes.”
Much of the criticism centers on breast cancer campaigns which over-sexualise the disease, equating breasts with womanhood and femininity. Rod Ritchie, who was diagnosed with breast cancer in 2014, points out that “October is a bad time for male breast cancer survivors because the trivialisation and sexualisation of the disease by the pink charities reinforces public awareness that breast cancer is gender specific. Since there’s little attempt to educate men that they need to be aware of symptoms too, we are diagnosed later and have a poorer prognosis. So, how about adding some blue to the pink, encouraging research on us, and screening those with a genetic propensity?”
Over a decade ago on an October morning, I was diagnosed with breast cancer; a double reminder each year of the role this disease has played in my own life. Looking back, I now see that my view of breast cancer was one-dimensional. Standing today on this other side of cancer I see a broader picture, a richer landscape of many shades beyond pink. This post is intended to provide a truer picture of the lives of breast cancer patients in its many varied hues. Wherever you are in your experience, whether you are caring for a loved one, recently diagnosed, finished treatment, or living with a recurrence or metastatic cancer, I hope this post will speak to you.
Lessons We’ve Learned From Each Other
Some of the most valuable lessons I’ve learned about breast cancer have come, not from my doctors, but from fellow patients. My doctors didn’t tell me about the effect of chemotherapy on my future fertility. I didn’t learn that treatment could damage my heart. And I finished treatment with no clue about late treatment side-effects or the risk of a cancer recurrence.
While valuing her oncologist’s expertise, Catherine Foy, who blogs at My Triple Negative Life, acknowledges that “within the online breast cancer community there will be someone awake somewhere in the world that can provide support and advice. For example, based on someone I followed I got my Vitamin D level checked which was very low and I am now on supplements. Other examples include creating awareness of late treatment side effects and reducing the feelings of isolation that some may experience.”
Liz O’Riordan, a breast surgeon diagnosed with recurrent breast cancer, and co-author of The Complete Guide to Breast Cancer, also refers to the feelings of isolation she experienced during her treatment. “I felt incredibly alone during my breast cancer treatment. I didn’t meet another patient at any of my chemo or radiotherapy sessions. All my advice was from amazing people on Twitter,” she says. Liz offers this advice to patients undergoing chemotherapy: “The two best tips I was given to reduce the side effects of chemo were: (1) Drink. Lots. Even when it taste disgusting. Ideally 3 litres a day. Try flavoured water or cordial. Carry a bottle everywhere you go. (2) Exercise. Walk for 30 minutes every day. You’ll hate me for making you. Some days you may have to stop and spit and pant and retch. But do it. You will feel better for it. And they were right. I did feel better.”
Barbara Jacoby of Let Life Happen agrees that we can learn valuable coping lessons from each other. “Whether it is a question of side effects that one is experiencing from a prescribed medication, or questions regarding treatment options or experiences or procedures, if you query a patient support or advocacy group, you are likely to find more answers and information from those who have had actual personal experiences with these issues. There is no doctor or group of medical professionals that has all of the information about real patient experiences and outcomes like any group of actual patients who have dealt with just about anything and everything imaginable on every level,” she says.
Both Catherine and Barbara believe that the information you get online should be shared and discussed with your doctors as the basis of shared decision making (the conversation that happens between a patient and clinician to reach a healthcare choice together). “I value my oncologist’s advice and experience,” says Catherine, “and would usually discuss with him any new developments that I may have encountered through the various platforms on social media.”
Terri Coutee, a two-time breast cancer survivor, and founder of DiepCFoundation, a non-profit organization providing information on options for breast reconstruction after mastectomy, also embraces the concept of shared decision making and wants others to experience it too. “I have had chemotherapy, radiation, two lumpectomies, a double mastectomy and breast reconstruction using my own tissue,” she says. ”Each of these occurrences was fraught with difficult decisions and hours of research to optimize my own health care plan. I left offices of various health care providers with armfuls of brochures and information to sort through and organize.”
Terri encourages patients to download the Breast Advocate App, a new tool to aid the shared decision making process. The app was developed by plastic surgeon Dr Minas Chrysopoulo, whose patient population is primarily those affected by breast cancer or at high risk of developing breast cancer. “Shared decision making is an extremely powerful approach to deciding our treatment plans. Simply put, it empowers us and helps us advocate for ourselves,” explains Terri. “As patients, we owe it to ourselves to embrace everyday conversations with our health care teams,” she says. “The information on the Breast Advocate app is informative, intuitive, and specific to your individual diagnosis or situation. There are treatment options with evidence-based articles to discuss with your healthcare team. It even features a community section. I encourage you to check out the wealth of shared decision-making information and download the Breast Advocate app to your phone.”
Siobhan Freeney, founder of Being Dense, an organization which raises awareness of Breast Density and its associated links to breast cancer and screening, was completely unaware of the issue until she was diagnosed with breast cancer. “40% of women have Dense Breasts,” she explains. “A Mammogram is the only way to determine and measure Breast Density. In Dense Breasts the reliability of screening mammograms can be reduced by as much as 50%.” When you have a Mammogram, the radiologist reading it can tell if you have Dense Breasts. Siobhan recommends you should ask for a copy of your radiology Mammogram report and ask if your breasts are dense. “If you have Dense Breasts you need to know and you should ask your Doctor/Radiologist about more personalised screening such as Breast Ultrasound or MRI,” she advises.
Metastatic Breast Cancer: The Other Side of BCAM
Learning about metastatic breast cancer (MBC; also called stage 4, secondary, or advanced breast cancer) from online blogs and social media networks was revelatory for me. MBC is breast cancer that has spread beyond the breast — to the bones, liver, brain, or another organ. Even if the cancer is found in another organ, it’s still referred to as breast cancer. Like Beth Gainer, who says, she learned “that anyone who’s been diagnosed with breast cancer is at risk,” I too have found, in Beth’s words, “what the metastatic breast cancer community has had to say has been a real eye-opener.”
MBC has been referred to as a story half-told, the other side of BCAM we don’t hear enough about. As Catherine points out, “For me, breast cancer awareness month is for those who are not yet diagnosed or those newly diagnosed. The pink scene looks to future research and provides good information for those starting or in the midst of treatment. There is less focus on those of us living or dying with breast cancer.”
Nancy Stordahl is unequivocal in her criticism of the failure each October to adequately raise awareness of MBC. “Despite all the pink, all the races, all the pink ribbons, most people still know little or nothing about metastatic breast cancer,” she writes. “No wonder so many with metastatic breast cancer feel left out, isolated, alone and yes, even erased.”
Joanne Taylor, a metastatic breast cancer patient and advocate, is pushing for more information and awareness of MBC. She created this infographic to show the red flag symptoms of advanced breast cancer.
While metastatic breast cancer is terminal and cannot be cured, because of improved treatments more women are living longer than ever with it. Even so, many misconceptions and lack of information about this diagnosis persist. “A stranger called Elizabeth Richards contacted me and like many other women she knew very little about MBC, yet the more she found out, the more angry and amazed she became that the illness was side-lined,” says Joanne. “Elizabeth’s view was that as long as metastatic cancer wasn’t mainstream people would not be aware of the limited treatment options available to them. If they knew, they’d demand more.”
One of the biggest misconceptions is that MBC is an instant death sentence. “We thought with BCAM coming up we would do something different to show how people could live well with MBC, so we started the #busylivingwithmets campaign,” explains Joanne. “Elizabeth had the idea, it was positive, it showed what people can do if they have access to drugs and surgery. I was her inspiration! If I can do it, others can as well – if they are given the right options.”
Lessons of Resilience, Connection, and Hope
Cancer can be a lonely and isolating experience, but it doesn’t have to be. “A friend told me to accept whatever help was offered, says breast cancer survivor Connie Rosser Riddle. “It was her way of saying to quit being Superwoman, that it was okay to be in need, vulnerable. It was best to be specific when folks asked, “What can I do for you?” My answer combined what that person was best at and where I needed help, and that made a good fit for both of us.”
Audrey Birt, diagnosed with breast cancer three times, shares lessons of courage, connection and resilience on her blog. “Cancer taught me I’m more resilient than I would have believed, it helped make me braver,” she says. “It also taught me that life cannot be controlled. This made me more able to live in the moment, and for the moment. That’s probably not so good for my bank balance but it’s great for my life balance in a way. It taught me to reengage with writing through my blog and in a funny way it changed my life and connection to others. But it also taught me my fragility and that’s a lesson I’m still learning, one day at a time.”
Ultimately however, the lessons you learn will be unique to you. “There is not a single person, story, book, lecture or talk, which will teach us all we need to know to understand the impact of cancer on our lives. That’s what we have to figure out for ourselves when we go through our own cancer experience,” says therapist, Karin Sieger . “Having been diagnosed twice with breast cancer all I can say is try and stay open minded – to your body, the illness, treatment options. You always have choices. Don’t get stuck in fear and don’t get stuck in complacency either. Live your life to the best of your ability and stay true to who you are – with or without cancer.”
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
https://powerfulpatients.org/pen/wp-content/uploads/This-certificate-is-proudly-presented-to.png600600Marie Ennis-O'Connorhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMarie Ennis-O'Connor2018-10-19 15:48:242019-09-02 12:32:03Beyond Pink: The Other Side of Breast Cancer Awareness and Lessons We’ve Learned From Each Other
Aging has its fair share of difficulties that if you are not prepared may adversely affect your life. Like birth or death, you can’t resist aging because it’s a stage of life. Note that, those who maintain a young healthy lifestyle experience a graceful aging.
However, even as you age, you can start taking part in a healthy lifestyle to reap the benefits. This doesn’t mean that you will completely avoid the effects of aging but the intense effects of aging will be prolonged or softer on you.
Ways to avoid senior health problems
1. Eat healthily
Proper nutrition is essential to maintaining a healthy body and an active mind. the rate of senior people affected by malnutrition is alarming. Unfortunately, malnutrition gravely affects a human being’s psychological ad physical system. With such effects, the senior is bound to die early.
Without proper nutrition, the seniors develop a weak immune system which means they are affected by all kinds of diseases. If you are a senior, even though you may lack the appetite take a meal that has a balanced diet.
The seniors may also lack appetite that sometime may result from the loss of smell and taste sensation. This leads to the urge to eat very little. Therefore, focus on appetizers for them. Otherwise, ensure they can eat a balance of food with calories, vitamins to maintain healthy organs.
A balanced diet helps to maintain a healthy weight, stay strong and retain essential body nutrients. Since you are prone to diseases like diabetes and heart problems, a healthy nutrition will help to avoid the occurrences of such diseases.
Fibers in your diet will help to combat the slow digestive system. Go for all the whole grains, highly fibred fruits and veggies. Drinking plenty of water is also important because it will help you to remain hydrated.
Ensure you consume fewer calories to maintain a healthy weight. As you age, you become less mobile as a result of less muscle energy and weak joints. Therefore, consuming more calories may not work to your advantage. You want to focus on more fruits, water and veggies
2. Exercise and mental health issues
As you age, you slow down and become dormant. This is a result of health problems, weight issues or fear of falling down. Most seniors don’t engage in exercise as they should. They don’t know that it can reduce the risk of developing different diseases while boosting their mobility.
It doesn’t matter what your age is, if you have the willpower and your doctor approves that you can work out, you will begin to feel strong. Exercising especially with a team increases your social circle, it boosts your immunity as you develop strong bones.
Some of the exercises that you can engage in include aerobics or any other medium level strength training, biking or yoga and stretch forms.
Another essential part is to maintain a healthy mind. Being a senior doesn’t mean your brain is old. You can engage in passwords, crosswords, reading as well as writing to maintain a healthy mental state. Other forms of mental exercises include visualization and meditation.
These mental exercises will keep you at par with your surrounding and even help you create your desires.
3. Convert their houses into a senior-friendly house
Making a house senior-friendly is about reducing the need to climb stairs or steps, making it non-slip and placing all support mechanisms to help seniors walk safely. Remember, most of them lack muscle strength and their joints are probably weak. So, you don’t need to make it harder for them.
If the world was perfect then we would have all the seniors living in a single-story building without high steps at the entrance or in an apartment with a functioning elevator. However, this isn’t always the case for most people. So, you can implement the steps below to make it senior friendly.
Add non-skid mats on the floors to avoid sliding. If your elderly uses walkers consider using the carpets to avoid slipping too.
For the staircases, they are generally not the best option for an elderly. However, you can install handrails to support them as they climb and go down the stairs.
Make the doorknobs safe but also easy to open. As earlier stated, you must focus on lessening the strains on the muscles and joints. Replace your doorknobs with lever style hardware.
The bathroom has caused various dangerous accidents over the years. Here focus on the floor and use non-skid mats, make the bathtub senior friendly. Change your toilet to suit the elderly height.
4. Prevention the disease is better than waiting to cure it
It takes so long to cure diseases even in your normal state. Since you are aging, visiting the doctor for medical check-ups every so often is essential. This medical procedure should involve checks against increased cholesterol level, heart conditions, different cancers and high blood pressure.
During your medical checks, you can also take vaccines against ailments like influenza and pneumonia. Make sure you have access to a doctor who in case you experience early symptoms like dizziness, loss of appetite and allergies can conduct an early medical check and give you early treatments.
It’s almost normal for the elderly to have poor vision. So, if this is you, visit your ophthalmologist sooner. Wear your glasses and have them checked every year. If you have the right glasses, chances are you won’t fall easily.
5. Socialize and Get enough rest
Seniors tend to isolate themselves or their families may reject them. In case this happens the seniors may suffer psychological traumas. Instead of staying in isolation, join support groups where there are like-minded people and people going through the same things for support.
If you can get engaged with the younger generation the better for you. Because they will not only make you mentally young and vibrant but they will also make you active and rejuvenated. They also give you a reason to keep living.
Never deny yourself sleep. Most seniors experience insomnia and frequent awake sessions in the night yet this will make you age quickly. Learn to think of only uplifting things before sleeping, keep the lights off and make your bedroom warm enough to encourage sleeping.
As a bonus, maintain a healthy outlook as this will keep you rejuvenated. Brush your teeth, bathe and wear some beautiful clothes. We all have a right to enjoy a happy life until we breath our last. Focus on wellbeing and this will become your reality.
Jimmy Olivas is a bathroom designer & plumbing industry expert. Jimmy has become an avid blogger by reviewing toilets. In his spare time, he enjoys walking through home improvement stores, rating different bathroom appliances and researching the latest and greatest toilets. Reach him at ToiletPlanner.com
https://powerfulpatients.org/pen/wp-content/uploads/Senior-B.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2018-10-17 16:14:142019-09-02 12:28:305 Ways to Avoid Senior Health Issues
Female breast cancer awareness, with it’s pink ribbons, and Save the Ta-tas t-shirts, and fundraising 5Ks, sweeps into October each year with the same prevalence as pumpkins. No other cancer has managed to garner as much support, attention, or money. But, even without the pink campaigns, the prevalence of breast cancer is not a secret. An estimated one in eight women is diagnosed in our country, and there are about 1.38 million new cases worldwide each year. You’d be hard-pressed to find someone who doesn’t know a breast cancer survivor. This month, in a three-part series, Patient Empowerment Network is taking a closer look at five survivor stories and one caregiver. These women represent the more than 3.1 million women in the United States who have a history of breast cancer. In today’s installment, you’ll be introduced to five of the six women, and you’ll learn that getting a breast cancer diagnosis wasn’t really a surprise to any of them.
Breast cancer survivors are interlaced through all of our lives, and there is something very endearing about how openly willing they are to share their stories. They freely talk about their diagnosis and treatment, but more than that, they talk about their darkest moments alone in the hospital, or their need for counseling after treatment. They discuss the lengths they will go to endure invasive treatment that may prolong their lives, and they share their prayers to live long enough to see their children grown. They are so deeply candid that it’s as if they are inviting you to be a guest for the day in their exclusive club.
Only it’s a club you don’t really want to be a part of, says Betty Abbott, who was diagnosed five years ago. She was 72 at the time, and her cancer was ductal and non-invasive. She says it’s the kind you want to get if you’re going to get it. But, is there really a kind of cancer any woman wants to get? While the death rates for breast cancer have been decreasing since 1989 thanks to increased awareness, early detection, and advances in treatment, breast cancer is still the second leading cause of cancer deaths in women in the United States, second only to lung cancer. In 2018, approximately 40,920 women are expected to die from breast cancer.
Cancer is cancer, no matter the stage, the type, or the form. “That’s the thing about breast cancer…it’s still cancer,” says Liz Abbott. She’s Betty’s daughter. The two are very close, and Liz was with Betty every step of the way through diagnosis and treatment. Liz hasn’t had breast cancer…yet, but she fully expects to get it. She knows the statistics. Even though less than 15 percent of people who get diagnosed with breast cancer have a relative diagnosed with it, a woman’s chance of getting breast cancer nearly doubles if a first degree relative (a mother, sister, daughter) has had it. So many women get breast cancer, so many families of women, that for some women it’s no longer if they will get it, It’s when. Since her mom’s diagnosis, “our new realities are very different,” says Liz, who can’t help but worry if breast cancer is her own daughter’s path as well.
It was the path for Shannon Knudsen, who was diagnosed three years ago, when she was 43. Like Liz, Shannon was very close with her mother and walked with her through diagnosis and treatment of breast cancer. Shannon’s grandmother and great grandmother had breast cancer as well. So, for Shannon, breast cancer was never an if. “I never thought I wasn’t going to get it,” she says. “It was always a matter of when.” So Shannon wasn’t surprised by the diagnosis, but she says she was angry. You see, while she was prepared and had a plan, cancer still managed to throw her what she calls “an interesting little twist”.
Since she watched what her mom went through, being diagnosed at 49 with recurrence as leukemia 16 years later that was ultimately terminal, Shannon was diligent about staying on top of cancer research, and as soon as she learned that genetic testing was available, she looked into having it done. She was absolutely positive that her family carried the BRCA gene mutation. The BRCA1 and BRCA2 genes produce proteins that help repair damaged DNA cells. When either of the genes has a mutation and the genes don’t produce the protein or function correctly, DNA cells are more likely to develop changes that can lead to cancer. There are specific mutations of the genes that increase the risk of female breast and ovarian cancers. People who have inherited the mutations, which can come from the mother or the father, are more likely to develop breast and ovarian cancers at younger ages.
As soon as Shannon’s insurance covered the testing, she had it done. Fully expecting a positive result, Shannon was prepared to have a preemptive double mastectomy with reconstruction. But, Shannon’s results were negative. She doesn’t carry the BRCA 1 or BRCA 2 mutations.“I was shocked,” says Shannon, and she feels like the results gave her a little false security. That’s where the anger came in, because in August 2015, when her mammogram and subsequent 3D testing showed a black and jagged spot of concern, she knew that meant she was bound for chemotherapy, and that was something she had always planned to avoid by having preventive surgery. “I was 100 percent prepared to do that, and it didn’t work out that way,” says Shannon. Cancer, as it often does, had other plans.
Cancer had other plans for Tina Donahue as well. “It was a really, really difficult time in our lives,” says Tina of her diagnosis in 1991. It’s not that Tina wasn’t expecting to get a diagnosis at some point. She also had a family history of the disease, her maternal aunt died from breast cancer, and Tina was a nurse so she had a keen understanding of her risk, but when she was diagnosed at 44, she had just been promoted to an executive vice president position at work, and she had three young sons. She was also in school to get her MBA. Cancer was not part of her plan, and she thought she was going to have to quit school when she was diagnosed. However, thanks to the support of the other women in her study group, Tina didn’t have to quit school. She says the women rallied around her, told her not to quit and helped her, encouraged her, and tutored her through.
When it came to treatment, Tina and Shannon, though diagnosed more than 20 years apart, had very similar methods. “I just wanted to hit it as aggressively as I could and give myself as much life as I could,” says Shannon. She told her surgical oncologist that hers would be the easiest consultation ever. She had done the research, she knew the risks, she knew exactly what treatment she wanted. Tina, who also wanted to treat her cancer aggressively says she told her doctors, “Give me everything you’ve got.” Both women had a double mastectomy and reconstruction with silicone implants. Tina says her implants lasted 23 years before she noticed they started getting folds in them, which was a sign that both implants, though contained, had burst, and she had to have them redone. Shannon’s implants are a newer technology called gummy bear implants and are designed so that they won’t burst. Tina says the silicone felt and looked more natural, and Shannon says that was important to her as well. Tina also says that if she hadn’t been a nurse who had seen a lot of recurrence in women who had had a single mastectomy, and if she hadn’t been witness to her aunt’s experience, she may not have opted for the double mastectomy.
Diana Geiser did not opt for the double mastectomy, but now says she wishes she had. Diagnosed at age 50, Diana says she struggled with the decision at the time and remembers feeling like she wanted to keep part of herself. “Now I wish I’d done both,” she says explaining that one of the draw backs is that her natural breast gets bigger or smaller with weight fluctuations, but her reconstructed breast does not.
Regardless, all three women had four rounds of chemotherapy. They all had clear lymph nodes, and were hormone-receptor-negative (HR negative), meaning that it was likely that hormonal therapies wouldn’t work for them. Tina, still wanting to treat her cancer aggressively, says she wanted to kill everything and had low dose chemotherapy. She lost some of her hair, but not all of it. For Shannon and Diana, the pathology reports came back showing their tumors were aggressive, Shannon’s highly so, making chemotherapy necessary. They both lost all of their hair, which is something that must be incredibly pertinent to breast cancer survivors, because whether they did or they didn’t lose it, they all tell you about their hair.
Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.
https://powerfulpatients.org/pen/wp-content/uploads/Untitled-design-1-5.png600600Jennifer Lessingerhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngJennifer Lessinger2018-10-16 18:32:512019-09-02 12:27:35Patient Profiles: Breast Cancer Part I
There is a really big question in healthcare, one that could shift the entire industry toward more patient-focused care while simultaneously driving down healthcare costs. Very few people even think about this question. In my experience even fewer, if any, of those who do ask it are involved in developing healthcare policy at the federal or state level.
This one question, if deployed, would start to solve the issues facing patients, clinicians, payers, hospitals – everyone involved in getting or receiving medical care.
What’s the question?
“How much is that?”
There are two things in play in the healthcare industry that fly in the face of marketplace sense. First is the lack of price transparency. Imagine going to the grocery store and seeing aisles upon aisles of food … without any prices posted.
“How much is that package of chicken breasts?” “That depends. How are you paying for it?”
My guess is that you wouldn’t shop in that store again. Healthcare is the only consumer-facing industry in the US that doesn’t have price transparency. Worse, if you ask for pricing, you’re often met with blank stares and “I have no idea” or, worse, “we can’t tell you because [insert name of health insurer here] considers that to be proprietary business information.”
Second is how the prices are set. You’ve heard of the medical billing codes – the Holy Codes that outline Medicaid, Medicare, and health insurance reimbursement payments for everything from lab tests to joint replacement. The price values for each of those billing codes is set by an American Medical Association (AMA) committee called the RUC: the Specialty Society Relative Value Scale Update Committee (for my personal take on the RUC, see this piece). The RUC meets behind closed doors, creates the pricing list for every single medical procedure and billing code, and then publishes it. This is not price fixing, since they hand the list to the Centers for Medicare and Medicaid Services (CMS) for publication, the AMA does not publish the list on its own.
Here’s a critical health policy issue: creating price transparency. One starting point could be requiring providers to know, and share, the cost of the services they provide to the customers they serve: THE PATIENTS. On the employer sponsored insurance (ESI) front, employers are starting to push for this with reference-based pricing in their benefits packages. On the state and federal policy front, there are a rising number of discussions about all-payer claims databases (APCDs) – for a really good explainer on that, I’ll point you toward this piece from July 2018 on the Health Affairs blog, “Transparency In Health Care: Where We Stand And What Policy Makers Can Do Now.” Both of these, either in tandem or singly, might accomplish what all the healthcare blue-ribbon committees and working groups in DC haven’t been able to pull off since the 1960s: downward pressure on healthcare costs.
Think about that as you evaluate your choices in the voting booth on November 6, and hold your representatives at the state and federal level to account after they take office. Whether you love the Affordable Care Act or not, you know that the healthcare system in the US must change, for the health of our families and communities as well as the financial health of our national economy.
And the next time you’re buying healthcare services, ask that really important question: “How much is that?” If you don’t get an answer, consider shopping in another healthcare store.
Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.
https://powerfulpatients.org/pen/wp-content/uploads/The-Biggest-Question-No-One-Is-Asking-in-Healthcare.png600600Casey Quinlanhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngCasey Quinlan2018-10-12 18:16:412019-09-02 12:27:35The Biggest Question No One Is Asking in Healthcare