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Could you be better prepared for your prostate cancer appointment? Prostate cancer specialist, Dr. Alicia Morgans explains what pre-appointment tasks and helpful tools can help ensure patients get the most out of their appointments.
Dr. Alicia Morgans is an Assistant Professor of Medicine at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.
Dr. Alicia Morgans:
There’s not really a question that I think is missed in most appointments when I talk to men with prostate cancer, but there are many men who have a burning question, whatever it may be, and they forget to ask it when we’re in that clinical encounter.
And the advice I would have is it’s really important if you think of it as a question that’s really important to you or even just a fleeting thought, to consider keeping a notebook where you can write it down to remember what that question is. Because if you bring the notebook, even that fleeting thought that you may never think of again is something that you’ve got written down, and you can open that notebook, and you can say, “Hey, I thought this may be a silly question, but what do you think?” And I’m sure that your doctor will answer it.
Questions about “How long do I have?” or “What can I expect?” or “How is this going to end?” or “Where is this going to go?” – these are sometimes questions that are really hard to answer. But even those questions, if that’s what you’re thinking about all the time, are going to be important to at least discuss with your doctor, whether you get a concrete answer or not. That may be an ongoing conversation that you have. But if you trust your doctor, you’ll be able to ask whatever it is that you need and not feel like it’s a silly question, because there really isn’t a silly question.
My best recommendation for patients to think about as they’re preparing for their physician visit is to get an advocate; get somebody to come in with you. And if that individual can’t come in with you, perhaps that individual can be on a cell phone or on FaceTime or engaged in that visit in some way, either in person or virtually.
And to take notes or to ask for things to be printed out that explain what you discussed at your visit, because it is very challenging to take in everything that is discussed in those physician visits and memorize everything when there’s really so much going on in many cases. So, having another set of eyes and ears and having a notebook piece of paper or a printout that really catalogs what was discussed can be really, really helpful in preparing for a visit.
And the other thing is to maybe always end with “Is there anything that I didn’t ask that I should?” or “Is there anything else that I need to know?” And sometimes that will prompt the doctor to say, “Yeah, I got through this whole thing, but I meant to mention this, and I forgot.” So, always leaving that door open in case there’s anything else the doctor needs to mention, and sometimes they just need a little prompt at the end. But I think the advocate’s probably the most important part.
As prostate cancer treatment options continue to expand, it’s important to partner with a physician who is up-to-date on the latest developments. Dr. Alicia Morgans explains why patients should consider seeking a specialist and obtaining a second opinion.
Dr. Alicia Morgans is an Assistant Professor of Medicine at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.
Dr. Alicia Morgans:
Over the last few years, prostate cancer treatment has been incredibly complicated. And I think I and many in the prostate cancer community would absolutely recommend that men with prostate cancer seek out a prostate cancer specialist to make sure that he has access to someone to get advice and medical recommendations that are going to be the most up-to-date.
It’s incredible to me that in the last few years there have actually been multiple new medications that have been approved, even some as recently as about a month and a half ago. And this landscape that we have to try to take care of men and help them live longer and feel better is constantly changing and hopefully broadening as we find more ways to take care of men with prostate cancer.
And the people that know that best are going to be specialists. And they include medical oncologists, urologists, and radiation oncologists, as well as some palliative care doctors who can really help with being specialists in pain control, constipation, appetite issues, energy issues. So, having a team of specialists is really critical. And it doesn’t necessarily mean that you need to see that specialist for every single appointment that you have for treating your prostate cancer, because many men in the United States who have prostate cancer don’t live very close to a large center where there might be a prostate cancer specialist.
Many men that I take care of actually live several hours away and come to see me once every six months or once a year or if they need advice because something has changed about their cancer. And that is completely okay, and actually, really, I think, a nice way to balance the convenience of having care close to home while still making sure that you have access to someone who is actively engaged in participating in the work to advance therapeutics and other ways of caring for prostate cancer.
Sometimes it can feel like you’re hurting feelings or potentially even offending your doctor if you say that you want to see someone else to get a second opinion or just to get another bit of advice about your cancer. But I think, and I think most doctors think, that at the end of the day part of dealing with cancer is making sure that you have the right treatment for the disease.
But part of taking care of people with cancer and dealing with cancer if you are the patient is making sure that your mind is at peace, that you have tried everything, and looked in every corner to find what you need to get the help that you really do deserve. And I think as we care for men with prostate cancer, we physicians know that we may have the answers for most but not all men, or we may not necessarily have an area of specialty in the particular issue that that man needs help with.
And so, we’re always open – I think I am. And I’m sure most doctors are, too – encouraging people, in fact, to seek second opinions if that’s what they need to either feel like they have access to the treatments that they need or to put their minds at ease. Because it really is the combination of physical care and emotional and mental care that is necessary to heal yourself while you are taking care of yourself with prostate cancer.
The actions that a patient takes following their prostate cancer diagnosis could have an impact on their care and treatment options. Expert Dr. Alicia Morgans recommends these three key steps post-diagnosis.
Dr. Alicia Morgans is an Assistant Professor of Medicine at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.
Dr. Alicia Morgans:
From my perspective, three key steps that a man with prostate cancer would take as he’s getting that first diagnosis would start with getting an advocate – getting someone who can be the extra eyes and ears that you need when you go to a visit or read something that doesn’t quite make sense.
I think this is especially important for doctor visits, where so much information may be put in your lap that it can be really hard for the individual who has prostate cancer to take everything in. And sometimes, having someone who can either take notes or can just be there to listen and to recall things can be really helpful.
The second thing would be to make sure you find a doctor who you can trust. And this sounds really simple, but sometimes can take trying a couple different doctors to really find the one who you feel that you can connect with and who you feel will be able to listen to the questions that you have. Because your questions are valid, and I’m sure that there is a doctor out there who can help answer those questions no matter what they are.
From my perspective, the third thing that individuals should really make sure that they have is a source of information that they feel they can trust. For many men, this is an online source. But it’s real important to recognize that there is a lot of false information, and there’s a lot of information that’s really not necessarily from your perspective as a man with prostate cancer, but perhaps from someone else’s perspective – still truth, but not necessarily your truth.
So, some of the best sources of information can be from advocacy groups or from medical organizations. Because these are usually going to be vetted by physicians or by groups of patients who really try to present both broad perspectives as well as correct information that will be trustworthy as you move through the journey of prostate cancer.
While there are many helpful online resources to guide patients in a positive direction, false claims and advertisements about prostate cancer can add confusion. Dr. Alicia Morgans provides insight into how to identify misinformation.
Dr. Alicia Morgans:
Some clues that may demonstrate that something is going to be riddled maybe with false claims or false promises would be if there are advertisements for medications that can cure prostate cancer on the computer.
Those medications are probably not real. And if they are, then they should be things that your doctor probably knows about. And so, I would certainly talk to your doctor about any supplements, any special nutrition or shakes or different things that make those claims. Because unfortunately, at this point, we in the medical community do not know of any herbs or spices that could cure prostate cancer. Certainly, there are things that people can take that may be useful and as long as they don’t interfere with the medicines that we’re using, or interact with them in a dangerous way, most doctors are completely okay with people taking them.
But anything that’s charging a lot of money and making really incredible claims is probably, unfortunately, just preying on people who are clearly vulnerable. And you need to be very careful that you’re not giving money away to things that are not real.
Numerous research studies have shown that avoiding sedentary life and taking regular physical exercise, along with a healthy diet and habits, is essential to prevent breast cancer.
But what about women who have already suffered from this disease and are still in the treatment and recovery phase? Although studies focus on specific sports such as Nordic walking or archery; experts are clear: physical activity can bring many benefits both physically and psychologically.
Fewer Relapses and Higher Quality of Life
According to data from the GEICAM Breast Cancer Research Group, women who remain active after diagnosis have a 67% lower risk of relapse than those with an inactive lifestyle.
In addition, regular exercise improves your quality of life. Exercising helps reduce fatigue and sleep problems. Besides, staying active improves the patient’s mood, increases her sense of well-being and reduces stress and anxiety.
Recovering from Breast Surgery
If there is no edema (swelling) or pain, the patient can return to normal life one week after the surgery. And if everything goes well, she can start playing sports in the first few weeks.
In some cases, however, it may be necessary to put yourself in the hands of a specialised physiotherapist before that. The consequences of the surgery vary depending on whether it has been conservative – the tumour has been removed while maintaining the breast – or a mastectomy has been necessary.
There may be a shortening of the skin between the chest and the armpit that affects the length of the arm. There may also be peripheral nerve-type sequelae, such as pain or lack of sensation. Especially in the case of mastectomy, but sometimes it also happens with conservative surgery.
“Physio” to Prevent Lymphedema
When it has also been necessary to remove the lymph nodes (lymphadenectomy), there is a 10% chance that the patient will suffer from lymphedema, a risk that increases to 20-25% if radiotherapy is also performed in the armpit, according to data from the Spanish Association Against Cancer.
Lymphedema consists of an accumulation of fluid in the arm, which causes an increase in its perimeter, heaviness, hardening, pain and difficulty in moving it.
In cases of lymphadenectomy and mastectomy 3 weeks or a month of physical therapy aimed at mobilizing the arm to prevent and treat these problems are recommended.
The specialized physiotherapist will adapt the treatment to each patient and then recommend which sports are most indicated in each case. As well as the stretching, relaxation and breathing exercises that can be done at home.
Exercising Strengthens the Immune System
What if the patient has to have radiation or chemotherapy? In this case, the treatment does not influence the possibility of starting physical exercise, although it is recommended to individualize it. In other words, adapt it to the patient’s condition and the physical activity to which she was previously accustomed.
There is evidence when regular practice can improve recovery of defenses, for example, influence of chemo is reduced.
Decrease the Side Effects
The breast cancer specialist also points out that after surgery most patients have to follow hormonal treatment for 5 years which causes a series of metabolic changes.
It can cause different disorders such as increased cholesterol, mood swings, etc. And it has been proven that exercising can help regulate these changes, reduce the side effects of hormone treatment or at least lower its intensity.
Better Aerobic Sports
As for what type of sports can be most recommended; there are none that are contraindicated, but that they should be evaluated individually.
The recent scientific evidence is in favor of aerobic and endurance exercise. Increased body mass index is associated with an increased risk of recurrence (reoccurrence of the disease) due to the mechanism of hormone production. And the weight control achieved with aerobic exercise is associated with the prevention of relapses.
Walking at a good pace, running, cycling or swimming are some of the aerobic exercises. Being lower intensity sports, but performed for longer, they are beneficial for the cardiovascular system and lung capacity, and improving endurance.
Besides, doctors highlight swimming, since in addition to mobilizing the arms, in water exercises the impact on the joints is cushioned, an aspect that must be taken into account if the patient suffers from osteoporosis or osteoarthritis as can happen after menopause. Swimming does not harm anyone.
I’m sure you’ve seen quite a few people walking around town with sticks lately. It’s called Nordic Walking and several studies have shown that this sport, which is affordable and easy to practice and can also be very beneficial in the recovery from breast cancer.
A publication by a group of Italian scientists describes that Nordic walking activates the trunk and upper limbs when walking, increasing their range of motion and the body’s total muscle strength.
By working the upper body (arms, shoulders, back), it improves blood circulation in the arms, stimulates lymphatic drainage and can improve secondary lymphedema in breast cancer.
The specialist recalls that lymphedema and alterations in local sensation, as well as the risk of deep vein thrombosis due to local circulation being affected are the main sequelae in the case of mastectomy if accompanied by lymphadenectomy.
And to prevent these problems, it may be advisable to do any exercise that is aimed at weight control and improving the venous return of the extremities”.
About the author: Nicholas H. Parker is a nutritionist and allergy expert. Besides, he has his own column on the site of buy essay cheap service. So he can share his experience with others. In this case, Nicholas has an opportunity to deal with work and hobbies simultaneously.
Cancer, the abnormal growth of cells that multiply aggressively, has become one of the most prevalent diseases in today’s time. Diagnosis marks one of the most challenging periods in a person’s life. Although curable at early stages, the malignancy itself and the side-effects of treatment change the sufferer’s life at a significant scale.
Lymphocytes represent a major component of the body’s immune system. There are two types of lymphocytes, T lymphocytes and B lymphocytes, and both are crucial for fighting pathogens. When the B lymphocytes respond to a foreign body, they mature into plasma cells and memory cells. The plasma cell is responsible for making immunoglobulins, also known as antibodies, specific to that particular pathogen. These antibodies are the most important precursors in the defense mechanism of the body.
Multiple Myeloma is a type of cancer that seeds itself in these plasma cells that comprise the body’s major immune component. Plasma cells are the prime fighters against foreign organisms such as bacteria, virus, and fungi. Their tendency to engulf the opponent malfunctions and thus the immunity gets badly affected in Multiple Myeloma.
Causes and risk factors for Multiple Myeloma
Although the cause of multiple myeloma is not known, certain risk factors can contribute to it.
1. Toxic chemicals
Toxic, cancer-causing chemicals include benzene-infused products, products that contain sulfates and parabens, fire retardants, dioxins, polychlorinated biphenyls (PCBs) and polybrominated diphenyl ethers (PBDEs). These all are said to be the highest cancer-causing agents. Out of all the chemicals, the ones containing chlorine are the ones that rank first in the production of cancer. Research has demonstrated the relationship between Multiple Myeloma and occupational exposure to six chlorinated solvents: 1,1,1-trichloroethane (TCA), trichloroethylene (TCE), methylene chloride (DCM), perchloroethylene (PCE), carbon tetrachloride, and chloroform, respectively. The occupational solvents here refer to those used in industries and factories.
The study concluded that among all six chlorinated agents, TCA showed the most elevated levels in leading to Multiple Myeloma.
2. Exposure to radiation
Workers at hospitals or diagnostic institutes are at higher risk of Multiple Myeloma. The radiation emitted is so powerful that it can surpass the skin, tissues, and muscles and can penetrate the bones to enter the bone marrow. A cohort study done in Mayak concluded that radiation emission greater than 1 Gy has significantly produced a higher risk of Lymphoma, Leukemia and Multiple Myeloma.
3. Viruses and immune disorders
Certain viruses have a correlation with Multiple Myeloma however, their association is still unknown. The viruses include:
- Simian Virus 40: This is one of the most intense polyomaviruses. It induces primary brain and bone cancers. It’s oncogenic (cancer-causing) property makes it the major culprit in causing multiple myeloma.
- Several herpes viruses: A study was conducted to evaluate the role of human herpesvirus 8 in the pathogenesis of multiple myeloma. Patients with Multiple Myeloma were selected, and their samples of blood were drawn and sent to the lab for testing. The study concluded that the majority of the patients with Multiple Myeloma showed the evidence of human herpesvirus 8 in their blood samples.
Apart from the above viruses, first degree relatives of patients with Multiple Myeloma may develop MGUS (monoclonal gammopathy of undetermined significance). Hepatic viruses and HIV have also proven to be linked to Multiple Myeloma.
As with many other diseases, Multiple Myeloma tends to run in families who have already been affected by it. In some cases, Multiple Myeloma goes undiagnosed in a principle patient who transfers it to several offspring before discovering it.
Patients aged 40 to 60 are at a higher risk to develop Multiple Myeloma.
Multiple Myeloma inflicts men more often than women. The cause is still unknown, but it could be due to hormonal differences. The male to female ratio is approximately 1.54 to 1.
The role of obesity in contributing to Multiple Myeloma is unclear, but it might be due to insulin resistance and improper functioning of the hormones.
African-Americans are twice as likely to have Multiple Myeloma than other races.
Signs and Symptoms of Multiple Myeloma
Based on Multiple Myeloma cases observed so far, following are the signs and symptoms of Multiple Myeloma:
- Nerve damage,
- Skin lesions (rash),
- Enlarged tongue (macroglossia),
- Bone tenderness or pain (including back pain, weakness, fatigue, or tiredness),
- Pathologic bone fractures,
- Back pain,
- Spinal cord compression,
- Kidney failure and/or other end-organ damage,
- Loss of appetite and weight loss,
- Hypercalcemia (high levels of calcium in the blood), and
- Leg swelling.
Is Multiple Myeloma Hereditary?
Multiple Myeloma is not considered a hereditary disease. While in some cases Multiple Myeloma may occur due to genetic abnormality, there is no evidence that heredity plays any role in its development. Research has shown several factors may contribute towards the development of Multiple Myeloma. While researchers have indicated a very slight chance that disease could be transferred from parents to their offspring, it’s very uncommon for more than one member of a family to have multiple myeloma.
Stages of Multiple Myeloma
Progressive stages of Multiple Myeloma have been recognized as follows:
- Smoldering: Multiple myeloma with no symptoms.
- Stage I: Starts with anemia, relatively small amount of M protein, no bone damage.
- Stage II: Severe anemia and M protein as well as bone damage.
- Stage III: Huge concentration of M protein, anemia, kidney damage.
Treatment of Multiple Myeloma
Treatment of Multiple Myeloma varies from patient to patient as cases become more and more complex. But some commonly treatment practices are explained briefly below:
- Radiation therapy: Treats a small mass of affected cells. Radiation therapy normally targets the damaged part of bone (where cancerous cells have affected bone causing severe damage). Radiation therapy includes use of high energy rays to kill and stop growth of damaged cells stopping cancer growth. ERBT (external beam radiation therapy) is the most common type of therapy done.
- Surgery: Involves removing or repairing of a body part. It can also fix the bones that have been damaged due to Multiple Myeloma.
- Chemotherapy: Involves the use of drugs to kill the cancer cells. It kills the fast growing cells and in some cases it also damages bone marrow.
- Stem Cell Transplant: Stem cell transplant replaces damaged cells in bone marrow with healthy plasma cells.
- Order of Treatments: Different patients have been given different type of treatments based on type of areas affected. But the order of treatment remains the same. The initial treatment given is known as Primary Treatment, which includes the curing the cancer after the diagnosis. This treatment is also known as an Induction Treatment. the Second step is of Maintenance Treatment, which is done to keep cancer cells suppressed.
Survival chances of Multiple Myeloma patients
Statistics can be confusing because each Multiple Myeloma case varies from patient to patient.
Survival rates are measured from the first point of treatment, such as chemotherapy. In the past, patients often could not survive even beyond the first stage of treatment because when cancer cells grow fast they cause too much damage. Since 2000 the percent of patients living five years after diagnosis has been increasing considerably, for up to 50 percent of patients.
Can Multiple Myeloma Be Cured?
For decades, multiple myeloma was considered incurable and only disease control was the goal of treatment. This was due to the fact that there were very few treatment options available.
With the introduction of high-dose therapy, stem-cell transplants, and immunomodulatory drugs, the survival rate for myeloma patients doubled when compared to the 1990s when only chemotherapy was used.
When deciding if multiple myeloma can be cured we have to define some terms:
- Partial remission – some, but not all signs and symptoms of myeloma have disappeared
- Remission – a decrease in or disappearance of signs and symptoms of myeloma
- Complete remission – all signs and symptoms of myeloma have disappeared
In an article for Myeloma Crowd, Jennifer Ahlstrom says, “Does remission mean a cure? In myeloma it typically does not. Though we love the word remission, we hesitate because myeloma is known to come back after some time.”
As a myeloma patient, you may always worry about the chance of recurrence, but there is hope that you can live with long treatment-free periods with excellent quality of life.
“Is there a pressure to be positive all the time?” my friend Kathy asked.
It’s a good question. I said, “No,” and then “Yes,” and added in a “Maybe.”
But it’s not a simple yes, no, or maybe. It’s actually Yes-No-Maybe all at the same time. My kid is on Facebook and so is my family. My friends are on Facebook and they want the best or at least to know I’m not suffering. I’m aware of that and of them. But that doesn’t mean I show up fake or put on fronts. I don’t.
The pressure to be positive isn’t external. I am safe to be real with SO MANY people and that luxury is a gift beyond measure. The desire to be positive comes from within but it’s not motivated by pressure. It’s real. In general, I ACTUALLY FEEL positive.
And also, when my oncologist asks how my partner or daughter are doing, I say:
“Well, I’m cranky, lethargic, have chemo-brain, and obsessed with recurrence so that’s fun for them…”
That’s also real.
Real is positive.
So, when people say I’m strong, a rock star, a warrior, and a fighter, I can’t say I feel I am any of those things. My day to day to life has been changed and though I feel 100% half-ass as a mom, partner, friend, relative, and employee – I also know I’m doing the best I can.
I don’t even have much time to think of how I’m doing because I’m so busy doing, if that makes sense.
It’s like I woke up after surgery standing in the middle of a highway I didn’t drive myself on. The focus is dodging the cars going 75 m.p.h. on my left and right while feeling groggy and confused. When I manage to make it to the sidewalk or the rest area, the relief I feel is real. I’m happy to be alive and out of danger. It’s a genuine and consuming experience. I’m relieved any time I’m not in the road and also aware I could be dropped back on that highway in another minute, day, week, or year.
That’s the complexity and reality of living with cancer (#ovarian, high-grade serious, stage 3) that, even when it’s effectively treated, still recurs 75% to 85% of the time. To have no evidence of disease isn’t the type of blessing I’ve been in the habit of counting.
For decades, I have had the luxury of physical wellness and had never stayed overnight in a hospital. Health isn’t something I take for granted anymore but that doesn’t make me a warrior as much as it makes me someone changed by cancer more than by choice.
I used to think people were sick with cancer, and either mounted a “successful” fight and returned to living or lost “the fight” and died. It seemed either/or and as those were the two extreme outcomes.
I knew my mother HAD cervical cancer in her early 20’s and survived. I knew that my Nana and her two siblings had cancer in their 60’s, and did not. They died.
I know cancer is always a full-on fight for the person with cancer and those that live with and love them (us), but fights are won or lost and that is the problem with the “fight cancer” narrative. It’s way too simplistic for the complexity of cancer, cancer treatment, cancer survivorship, palliative care, and grief.
It omits the vast amounts of time that many of us live with cancer. We live with it in active form, or in remission, or in fear of recurrence, and sometimes with recurrence after recurrence. That way of living may last one or two years or one or two decades. We may have years we seem to be “winning” the fight and years we seem to be “losing.”
But winning and losing is far too simplistic. Some live and have loss. Some die and should be counted as winners.
I’d never known some fight the same cancer repeatedly, or “beat” it before getting another kind and another and another. I didn’t know that people cancer can be a lifelong disease and that some kinds are genetic time bombs in our bodies and families that can put us at risk even if we never smoked.
I didn’t know that one can have or five surgeries, that the side effects can start at the head (loss of hair, headaches, chemo brain, no nose hair, dry mouth, hearing loss), for example, and go all the way to the feet with lymph edema, joint pain, neuropathy, and that all the organs in between can be impacted as well.
I didn’t know that most cancer side effects are not from cancer but the treatments to fight, eradicate, and prevent more cancer.
I didn’t know that in addition to chemo, one might contend with liver or kidney issues, with high or low blood pressure, with changes to the way heart beats, the digestive symptom works.
I didn’t know that cancer surgery might include a hysterectomy and removing some or several organs, lymph nodes and body parts I’d never heard of. I didn’t know how it’s impossible to know what is from cancer, chemo, menopause or the piles of pills one is prescribed.
I didn’t know how much the body can endure and still keep going. I didn’t know I’d have a body that would have to learn and know all that I was mostly ignorant about -even though cancer is a disease not unknown to my own family members.
I am still learning and knowing and going. I hope what I learn keeps others from having to have first-hand knowledge of the cancer experience.
And even as I say that I know the ways I’ve been changed are not all bad, hard, or grueling.
I didn’t know that at, even in the midst of being consumed by all things basic bodily functioning (breathing, heart beating, eating, pooping, sleeping, and staying alive), one can also be grateful, satisfied, and appreciate life and loved ones.
I know it now and feel grateful daily.
Five months after my diagnosis, I’m what’s called NED (No Evident Disease). It means that after surgery, and then 5 rounds of chemo, a carbo/taxol combination every 3 weeks, there is no sign of ovarian cancer. My CA 125, a cancer marker in the blood, is back to normal. Things are looking better today and I’m grateful, optimistic, relieved, but also know that my life is forever changed, and I’ll never be out of the woods.
Despite my NED status, my chances of being alive in 10 years are 15%.
Despite my NED status, my chances of being alive in five years are less than 30%.
Did you know 70% of those with ovarian cancer die within five years of being diagnosed?
I’m not a statistic, but a person – still, it’s hard not to do the calculations.
5 years from my diagnosis I’ll be 57, and my daughter 21.
5 years from my diagnosis, my partner will be 62.
Will we get to retire together, ever? Will I get 5 years?
It’s hard not to wonder if some or all of those five years are what most would consider “good” years and how I will manage well no matter what? And how my loved ones will fare…
So I focus on moments, days, and now.
My new mantra remains, “In this moment….”
It’s how I approach all of my days.
I do think and worry about the future, and even plan for the worst while also planning for the best. Because the best is always possible.
What if, I’m the 15% and live for 10 or more years? What if I make it to 62? What if a new way to detect, manage, or treat ovarian cancer is discovered? What if I discover some synergy in remedies and medicines not yet combined?
Maybe I will see my kid graduate college or start a career. Maybe I’ll help her shop for furniture in a new apartment. No one knows the future. No one guaranteed more than now.
Maybe I’ll get to go to Europe with my partner, elope and return married, or stay forever engaged.
Maybe I’ll attend a mother-daughter yoga retreat with friends like I’ve always wanted to do.
Maybe I’ll spend a month at a cabin writing and eating good food with my besties?
Maybe I’ll be able to be there for my family members and friends the way they have been there for me?
Maybe I’ll get to walk my dog at the same beach and park, with my guy, my brother and sister-in-law, and our dogs and kids?
I don’t know how much time I’ll get or what life holds.
I know when my Nana died in her mid 60’s it seemed way too soon. I know that now, if I make it to my mid 60’s, it will be miraculous.
I don’t put as much into my retirement savings.
I think more about how to spend time, and money, now.
These are not negative thoughts they are the thoughts of someone contending with cancer and wide awake while pondering my own mortality.
“You won’t die of this,” some have said. “Cancer won’t kill you.”
But no one knows that for sure. It’s not an assurance the oncologists offer.
People mean well when they say such things but I no longer bite my tongue when I hear these words.
I say, “I might die of this,” (and I think, but don’t say, and you may as well).
I do remind people that we are all going to die and few of us will get to choose the time or place or method. It’s not wrong to acknowledge mortality. It’s not depressing and it does not mean one is giving up. I want to be responsible, and quickly, as I don’t have the luxury to be as reflective as I used to be because cancer is all-consuming.
I’ve barely had a moment to reflect on the past five months never mind the last five decades. I am trying to stay on top of the bare minimum requirements of being alive. I can’t yet keep up with emails or phone calls or visits. Projects and goals and plans of all kinds have shifted, paused, halted, or been abandoned.
My energy is now a resource I have to monitor and preserve. My will is not something I can endlessly tap into or call upon to motor me and keep me motivated. There’s no resource I have yet to tap into or call upon. Each day, I must consciously and repeatedly work to fill the well. And now, when friends and family who work while sick, I no longer think they are tough or strong. I think of how we routinely punish and ignore our bodies. I notice how often we run on fumes, require more of ourselves than we have as though we will never tire out.
I think of all those who must or feel they must keep going no matter what, without pause or rest, oblivious to the toll it will take or of those who have systems that can’t fight their germs. And I think of employers who sometimes require it because they offer no paid time off.
I used to run myself ragged. I used to say, “I’m digging deep, into my bone marrow if I have to.” I wasn’t being literal.
Now, when my iron and my platelets go low, I think of my old words in new ways. Now, even my bone marrow isn’t what is used to be.
I’m entirely who I always was and completely different.
I am more and less of who I was.
My life and days are simple and structured now and also heavy, layered, and complex. Who and what fills my day, by choice and not by choice, is radically different.
Cancer changed my life. That’s irrefutable and will be whether I live or die in the sooner or in the later.
I speak with and interact with doctors, nurses, life insurance and disability insurance and pharmacists more. I spend more money on supplements, clean eating, and make more time to walk, exercise, and sleep. There’s so much less I am capable of.
But sometimes, even without hair, I feel totally like myself.
Sometimes, like this week, my daughter caught me in the middle of life, reading a book, petting the cat, on my bed in my heated infrared sauna blanket. I was relaxed and at ease.
I shared this photo and someone commented on how my “cat scan” was quite feline, – the image brought a whole new meaning to the “cat scan” image.
I laughed and laughed and laughed. I’m still laughing.
In this moment, in many moments, I’m humbled by the enormity of all things cancer and being alive. That’s real. That’s there. It can be intense.
But also, in this moment, I’m laughing.
And laughing, it turns out, is my favorite way to live.
When not recovering or coping with her recent ovarian cancer diagnosis, chemo brain, and the other treatment-related side effects, Christine “Cissy” White works as Community Manager of the Parenting with ACEs community on ACEs Connection and blogs at www.healwritenow.com. White has been published in The Boston Globe, Spirituality and Health, Ms. Magazine, The Mighty, To Write Love on Her Arms, Elephant Journal, the Center for Health Journalism, and ACEs Too High. She is the 2019 recipient of the Touching Trauma at Its Heart Award, given by the Attachment Trauma Network for her work advocating on behalf of families coping with traumatic stress from developmental trauma. White has led Parenting with ACEs, Parenting After Trauma, and Writing to Heal workshops and speaks passionately about the need for first-person perspectives and the power of lived expertise. Her survivor-led advocacy has been written about in The Atlantic, Huffington Post, and The Mighty.
Avoiding health care scams can be as simple as not signing blank forms, not providing personal information to unknown parties, and not agreeing to schemes to make money by falsifying paperwork.
Unfortunately, there is a scammer for every medical condition or concern. People who are suffering from conditions like cancer and its harsh treatment regimen may be confused and belittled by persistent phone calls or emails but there are ways to fight back.
How it Works
Healthcare fraud is a way of billing health insurers or government programs like Medicaid out of money through a system of fake, unnecessary, or inflated bills. An unscrupulous doctor may offer you cash in exchange for your signature on a permission form that will allow him to bill for fake services.
Others, including people who show up at retirement homes or senior activity centers, may offer to provide a medical “test” of some kind, whether eyesight or hearing, etc. The individual then bills your insurer or Medicaid an exorbitant amount for the useless service – or gets added to your monthly regimen of providers despite the service or monitoring not being necessary. A new wrinkle in this phishing scam are people who offer to provide a “genetic test” using a cheek swab at a healthcare fair, senior center, or other forum, and who have you fill out medical insurance information at the same time. They will then try to bill your insurance for the unnecessary “test” and may pursue you for the cost if your insurance refuses to pay.
Medical equipment, from oxygen tanks to catheters to shower chairs, may be provided by scammers who bill your healthcare insurance despite the item being either unnecessary or absurdly high-price. If you accept medical equipment, be sure it’s recommended by your regular doctor, that it’s necessary, and that you shop around for the best price rather than just signing an authorization that allows the provider to bill any amount.
Home health aides may be assigned to your home and billed to your insurance but never show up to provide a service. Keep an eye on your billing statements to be sure this sort of fraud is not showing up on your account, and call your provider if you see anything suspicious.
How to Avoid Healthcare Scams
To protect yourself from such scams use tools at your disposal, such as reverse email lookup, confirm website addresses and compare them to actual government websites you find on your own, or call your health insurance provider if you’re suspicious about a bill, a caller, or an unwanted package of medical equipment. Here are other tips to follow:
- Never sign a blank healthcare or medical form that authorizes payment in exchange for a treatment (such as that described above) that was not planned and authorized by your usual medical team.
- Do not accept unnecessary equipment that you did not order and do not use, like braces, apnea devices, or orthotics.
- Watch your billing statements for any unauthorized charges, and report any that are unusual.
- If you think a doctor is doing unnecessary tests or surgeries, get a second opinion. This can be a way to bill for services that you don’t need.
- Check your billing statements to ensure that the procedures noted are exactly what you received because some scammers are able to change the name of a procedure, such as a biopsy, to collect more money.
- Providers may also try to “unbundle” procedures and charge more for each step rather than a “package” price. Watch for this more expensive billing practice on your statements.
Healthcare can be a confusing part of life to navigate, as many of us have multiple doctors, copayments, coverage issues, deductibles, drug coverage, and more to learn about. Unfortunately there is a scammer looking to work every angle and take advantage of anyone, so beware of the following healthcare related scams:
- Anyone who calls to tell you it’s necessary to buy a new health insurance card or pay over the phone for a new Medicare card immediately and wants your credit card and/or social security number and personal information (you can call 1-800-MEDICARE to check the person’s identity and validity of their call before providing any information);
- Confusing medical discount plans with medical insurance – discount plans are “club” like groups that claim to offer discounts on doctor visits, drugs, and medical devices but they are not the same as insurance;
- If you receive Medicare you do not need additional insurance provided through the Healthcare Marketplace, and anyone who wants to charge you a fee for helping to make a decision about coverage offered through the Healthcare Marketplace is a scammer and should not be given a credit card number, bank transfer, or paid with gift cards, and
- Anyone who claims to be “from the government” and threatens you with a financial penalty for not being up to date on insurance is a scammer and should not be told any personal information such as social security number (you can call the Federal Trade Commission at 1-877-382-4357 to ask about or report fraudulent schemes).
Ben is the Director of Web Operations at InfoTracer, who takes a wide view from the whole system. He authors guides on the entire security posture, both physical and cyber. Enjoys sharing the best practices and does it the right way!
When it comes to lung cancer, you would be hard-pressed to find someone who didn’t know that it is linked to smoking. If you don’t want lung cancer, you don’t smoke. It’s as simple as that. Or, is it? Smoking is the leading cause of lung cancer, but it is not the only cause. Lung cancer is not a simple disease. Lung cancer is complex and misunderstood and underfunded, and it continues to be the leading cause of cancer death. With the number of lung cancer cases on the rise among people who have never smoked, it’s about time we really get to know lung cancer.
Lung Cancer Overview
Lung cancer is the result of abnormal cells growing out of control in the lungs. It is most often caused by smoking, but it can and does occur in people who have never smoked. People of any age can get lung cancer, but it is most likely to occur in adults in their 60s and 70s. Lung cancer is most successfully treated when found early, but because lungs are large, tumors can grow in them for a long time without being detected. Lung cancer can spread and metastasize to other parts of the body, and once lung cancer has spread, it becomes harder to treat. Cancer can spread through tissue, the lymph system, and blood. If the cancer spreads through tissue it moves to nearby areas. If the cancer spreads through the lymph system and the blood, it metastasizes, forming a tumor (metastatic tumor) in another part of the body. The metastatic tumor is the same type of cancer as the original tumor. So if lung cancer spreads to the liver, it is still lung cancer, not liver cancer, and needs to be treated as such.
There are two main types of lung cancer: small cell and non-small cell. They are defined by the size of the cells when viewed under a microscope. The two types grow differently and are treated differently. Non-small cell lung cancer is the most common lung cancer, making up 85 percent of lung cancers. Small cell lung cancer makes up the other 15 percent, and it grows quickly. Usually by the time it is diagnosed, it has already spread to other areas of the body.
Non-Small Cell Lung Cancer
There are several types of non-small cell lung cancer, but the three that are most common are adenocarcinoma, squamous cell carcinoma, and large cell carcinoma. The most common in the United States is adenocarcinoma. This cancer starts in the cells that line the part of the lung called the alveoli. The alveoli are very small air sacs that are at the end of the respiratory system, where oxygen and carbon dioxide are exchanged in the bloodstream. The alveoli are balloon-shaped and are in clusters throughout the lungs. There are millions of them in the lungs. Squamous cell carcinoma (also called epidermoid carcinoma) makes up about 25 percent of all lung cancers. It forms in the thin, flat cells that line the inside of the lungs. Large cell carcinoma makes up about 10 percent of lung cancer cases, and it can form in any large cells in the lungs.
The less common types of non-small cell lung cancer are: pleomorphic, which is a rare malignant tumor; carcinoid tumor, a slow growing tumor usually found in the gastrointestinal system, but sometimes found in the lungs; salivary gland carcinoma, a rare cancer that forms in the salivary glands, mostly in older people; and unclassified carcinoma, a tumor that can’t be specified because of an insufficient sample or some other reason.
Non-small cell lung cancer has several stages. The stages are determined by the size of the tumor and whether or not the tumor has spread. Non-small cell lung cancer can also come back after it’s been treated. It can come back in the lungs, but can also recur in other parts of the body. The five-year survival rate for people with non-small cell lung cancer is usually between 11 and 17 percent.
Small Cell Lung Cancer
The two types of small cell lung cancers are small cell carcinoma, called oat cell cancer, and combined small cell carcinoma. Small cell lung cancers usually grow quickly and are very likely to spread, most often to the liver, brain, bones, and adrenal glands. After diagnosis, most people live for up to one year. Less than seven percent survive five years.
Lung Cancer Risk Factors
Risk factors are things that increase your chances of getting cancer. Some risk factors are things you can control and others are not, but it is important to know your risk so you can help prevent the occurrence of cancer or know if you should be screened. The risk factors for lung cancer are:
Most, but not all, cases of lung cancer are caused by cigarette smoking. It is the number one risk factor and when combined with other risk factors, it tends to magnify the risk. Using other tobacco products, such as cigars and pipes, also increases your risk. People who smoke tobacco products are about 15 to 30 times more likely to get lung cancer. Smoking occasionally or a few cigarettes a day also increases the risk. The risk increases the more years you smoke and the more cigarettes smoked each day. Using low-tar or low-nicotine cigarettes does not decrease the risk of lung cancer, but quitting smoking does. People who have quit smoking have a lower risk than if they had continued to smoke, but they still have an increased risk over those who never smoke.
Secondhand smoke can be just as dangerous as smoking when it comes to lung cancer risk. When you breathe secondhand smoke into your lungs it is just like you are smoking. While the doses are smaller, you are exposed to the same cancer-causing toxins as if you were smoking.
Radon Gas and Other Substances
Radon is a radioactive, naturally-occurring, colorless, odorless and tasteless gas that causes approximately 20,000 cases of lung cancer each year. Radon often gets trapped in houses and can build up over time. There are other substances, often found in workplaces, that when exposed to them, also put people at risk for lung cancer, including asbestos, arsenic, diesel exhaust, tar and soot, nickel, beryllium, cadmium, and some silicas and chromiums. While these substances can cause lung cancer in those who have never smoked, the risk of lung cancer is higher for people who smoke in addition to being exposed to the substances. Exposure to radiation after an atomic bomb explosion also increases lung cancer risk.
Personal or Family History
People who have a personal or family history of lung cancer are at increased risk. If you have already had lung cancer you are at risk of developing another lung cancer. If you have a close family member with lung cancer, your risk of getting lung cancer is also increased, but that is largely because smoking tends to run in families. Even if you don’t smoke, but live in a home with a smoker, your risk is increased due to secondhand smoke exposure. There is also growing research that shows that genetics could play a role through inherited gene mutations (more about that later).
Patients who have had radiation therapy in their chest to treat certain cancers, such as breast cancer and Hodgkin’s lymphoma, are at higher risk for lung cancer: the higher the dose, the higher the risk. Patients who have received radiation therapy, and who also smoke, have a higher risk than non-smokers. Imaging tests, such as CT scans, also expose patients to radiation and can increase lung cancer risk.
People who live in areas with higher levels of air pollution have a higher risk of lung cancer. The quality of the air you breathe matters.
There is not a lot known about how diet affects lung cancer risk, but scientists do know that smokers who take beta-carotene supplements have an increased risk of cancer. Also, people exposed to arsenic in drinking water, often from private wells, have an increased risk of cancer.
People who have the human immunodeficiency virus (HIV) may have twice the risk of lung cancer than those without HIV. However, because people with HIV have higher smoking rates than people without HIV, it is hard to know whether the increased risk is from the HIV infection or the cigarette exposure.
Preventing Lung Cancer
It is possible to reduce your risk of lung cancer through prevention because so many of the risk factors for lung cancer are environmental or lifestyle-related. The best ways to reduce your lung cancer risk are:
Not smoking is the number one way to prevent lung cancer. People who already smoke can lower their risk by quitting smoking, and smokers who have been treated for lung cancer can reduce their risk of another lung cancer by quitting smoking. The amount your risk lowers when you quit smoking depends on how long and how much you smoked, and the number of years since you quit. The risk of lung cancer decreases 30 to 60 percent after someone has quit for ten years. However, the risk will never be as low as if you had never smoked in the first place.
Reduce Environmental and Workplace Exposure
Laws that help protect workers from exposure to lung cancer causing substances in the workplace can help reduce the risk of lung cancer. In addition, laws that prevent secondhand smoke help lower lung cancer risk. Reducing exposure to radon gas can also reduce the risk of lung cancer. Reducing radon in homes can be done by taking such measures as sealing basements.
There are other means of possibly preventing lung cancer, though there is no clear evidence that they will specifically decrease the occurrence of lung cancer. They include:
There are studies that show that people who eat large amounts of fruits and vegetables are less likely to get lung cancer than people who eat small quantities. However, studies also show that people who are inclined to eat a lot of fruits and vegetables are less likely to smoke, so it is not known whether the reduced cancer risk is from eating fruits and vegetables or from not smoking.
The same is true with physical activity. Studies show that more physically active people are less likely to get lung cancer. However, non-smokers tend to be more physically active than smokers, so it’s hard to tell whether the cancer risk is from the physical activity or from not smoking.
The Role of Genetics
Aside from the environmental risk factors, how can we account for the roughly 20 percent of people who die from lung cancer who are never smokers? Lung cancer in never smokers is on the rise in both the United States and Europe so researchers have started looking more closely at a genetic link to lung cancer. It’s estimated that about eight percent of lung cancers are hereditary. You can’t inherit cancer, but you can inherit a likelihood to get cancer based on the make up of your genes. Most lung cancers occur because of gene mutations that happen during a person’s lifetime, like when they are exposed to carcinogens, such as tobacco smoke or radiation. These are called somatic, and they can’t be passed down through families. However, there are hereditary mutations passed down through families called germline, and having these can increase your risk of getting cancer. Scientists have begun to identify the link between some of the mutations and lung cancer. There is a lot more to learn about the role of genetics in lung cancer, but researchers do know that young women never smokers are the most likely to have lung cancer caused by a genetic predisposition. They also know that people that get cancer as a result of a hereditary mutation are more likely to get non-small cell lung cancer.
Lung Cancer Screening
The best chances of treating many cancers come from early diagnosis and treatment. That is why it is important for people with the highest risk factors to be screened before they have symptoms. People who should be screened for lung cancer are between 55 and 80 years old, currently smoke or quit within the last 15 years, and have a 30 pack year history of smoking. A 30 pack year history means they smoked one pack a day for 30 years or two packs a day for 15 years. Often, by the time someone has lung cancer symptoms, the cancer has already spread. There are three types of screening tests for lung cancer: the low-dose spiral CT scan (LDCT), also called a low-dose helical CT scan, chest X-ray and, sputum cytology, which examines the mucus from the lungs.
Of the three screenings, only the LDCT has shown in a trial that it can decrease the risk of dying from lung cancer. The trial studied heavy smokers, aged 55-74 years, who had smoked at least one pack of cigarettes per day for 30 years or more, and heavy smokers who had quit smoking within the past 15 years. The study found that LDCT screenings were better than chest x-rays at detecting lung cancer in the early stages. The study also showed that LDCT screenings reduced the risk of dying from lung cancer. The study did not find that chest x-ray and sputum cytology screenings decreased the risk of dying from lung cancer.
While screenings can save lives, there are some risks. It is important to remember that there is no guarantee that finding lung cancer will improve your health or help you live longer. Also, the tests can be wrong. Sometimes cancer that is there won’t be detected; other times screenings can lead to a false alarm that could result in an unnecessary, invasive procedure. Or, screenings can lead to overdiagnosis, which means that cancer cells that may never cause harm to your body and don’t require treatment, get detected. The LDCT scans also expose the patient to radiation. The risks of screening should be considered and discussed with your doctor. Hopefully, in the future there will be better screening methods for lung cancer. There are researchers looking into more effective, less invasive, and less expensive screenings, such as breath and saliva analysis.
Signs and Symptoms
Lung cancer does not always have symptoms and when it does, the symptoms are often very general and similar to things like a respiratory infection, that don’t seem serious. Often, by the time someone has gone to the doctor the cancer has already spread. When this happens, other symptoms beyond what are listed here could be present. However, any symptoms should be checked with your doctor. Lung cancer symptoms include:
- A cough that doesn’t go away or worsens
- Chest pain, discomfort
- Frequent chest infections, such as bronchitis or pneumonia
- Unexplained headaches
- Trouble breathing
- Loss of appetite
- Unexplained weight loss
- Feeling very tired
- Trouble swallowing
- Swelling in the face or the veins in the neck
- Bone pain
- Coughing up blood
Lung Cancer Diagnosis
There are several test options used to diagnose lung cancer. Tests can include a physical exam and patient history, lab tests, chest x-ray, CT scan, examination of mucus from the lungs, and thoracentesis, which involves checking for cancer in fluid removed from the lungs.
After initial testing, if cancer is suspected, a biopsy is done. There are several possible types of biopsy, and each individual case will determine which type of biopsy is necessary. The biopsies range in level of invasiveness from insertion of a needle or a scope to surgical procedures and lymph node removal. There are also lab tests used to test for lung cancer. Some lab tests check sample tissue, blood, or body fluids for indications of cancer while others look for cancer markers, called antigens. The markers can sometimes help determine the type of cancer.
Staging Lung Cancer
When lung cancer is diagnosed, then the stage of cancer is determined. The stage is the size of the tumor, and whether the cancer has spread within the lung or in other parts of the body. Sometimes the staging is done during diagnosis, but if not, other tests are used to identify what stage the cancer is in, which helps determine a treatment method.
Stages of Non-Small Cell Lung Cancer
Non-small cell lung cancer staging is very complex, and many of the stages have several subgroups with specific conditions based on the size of the tumor, whether or not the cancer has spread to the lymph nodes, whether the cancer has spread to the opposite side of the chest from the original tumor, whether or not there are additional tumors, and whether or not the cancer has spread to other parts of the body. A very simplified version of non-small cell lung cancer staging looks like this:
Stage I: The cancer has not spread to the lymph nodes.
Stage II: The cancer has spread to nearby lymph nodes.
Stage III: The cancer has spread to the lymph nodes and other parts of the surrounding area.
Stage IV: The cancer has spread to other parts of the body.
Stages of Small Cell Lung Cancer
Small cell lung cancer has two stages:
Limited Stage Small Cell Lung Cancer: The cancer is in the lung but may have spread to the area between the lungs or to the lymph nodes above the collarbone.
Extensive-Stage Small Cell Lung Cancer: – The cancer has spread beyond the lungs to other areas of the body.
As with other cancers, lung cancer is often treated with a combination of procedures. There are ten types of standard treatment for non-small cell lung cancer. They include surgery, radiation therapy, chemotherapy, targeted therapy, immunotherapy, laser therapy, photodynamic therapy (PDT), cryosurgery, electrocautery, and watchful waiting. Small-cell lung cancer is treated with
surgery, chemotherapy, radiation therapy, immunotherapy, laser therapy and endoscopic stent placement. Several different treatment options may be used depending on the type and stage of the cancer. There are four types of surgery used to treat lung cancer. They range from removing a small section of the lung lobe to removing one whole lung. There are, of course, risks and side effects to treatment options that patients should discuss with their doctors, and patients should also be aware of the latest treatment options available. Researchers are always looking for new, more effective treatment options through things like studies and clinical trials.
If you are diagnosed with lung cancer, you might want to consider participating in a clinical trial. There are trials available all over the country. Clinical trials help determine whether new treatments may be better than the standard treatments. The trials help to advance the treatment of cancer. Each clinical trial will have its own requirements. There are usually trials available to patients in any stage of treatment. Information about available trials can be found on the National Cancer Institute website, cancer.gov.
Recovery and Survival
The chance of recovery from lung cancer depends on several factors, including the type of cancer, the stage the cancer is in, whether the cancer has spread, whether the patient has signs or symptoms, and the patient’s overall health. However, more than half of people with lung cancer die within a year of diagnosis. This is likely because only 16 percent of lung cancers are diagnosed at an early stage. The lung cancer five-year survival rate is 18.6 percent, which is much, much lower than other cancers, such as colorectal cancer, which has a five-year survival rate of 64.5 percent. The breast and prostate cancer survival rates are even higher.
Lung Cancer Stigma
There are some that believe that lung cancer survival rates are so much lower than other cancers because of a stigma attached to the disease. When it comes to lung cancer, people tend to assume that it is a self-inflicted disease. The stigma can affect patient care and funding which could lead to advances in research. Some patients have reported feeling guilt and shame for having lung cancer, and some said that they delayed seeing their doctor about their lung cancer symptoms because of the stigma attached. Other research has shown that when patients do seek treatment, some doctors were less likely to refer the patients for further treatment if they had lung cancer rather than another cancer. Funding is also negatively affected by the stigma. Despite lung cancer killing more people than breast, prostate and colon cancers combined, federal and private funding are both way behind what other cancers receive for research. Only six percent of the federal money spent on cancer research is spent on lung cancer.
There is evidence that the lung cancer stigma is starting to change, as are the cases of lung cancer. With 60 to 65 percent of all new lung cancer cases being diagnosed in people who have never smoked or are former smokers, lung cancer can no longer be considered a simply a smoker’s disease.
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