A Caregiver's Notes |
Holding Fast: The Caregiver's Role in the Diagnostic Process
An ESUN Article
Frightened, Angry, and Tired People
Change is an important part of any long-term relationship. By the time we had been together for 6 years, Ariel and I had both changed in big ways and in small ways, together and separately, for better and for worse. But the initial symptoms of his cancer transformed us both into frightened, angry, tired people who didn’t know how to help each other any more.
Some of the tensest moments of our relationship left me staring at a ridiculous poster while Ariel waited to see his chiropractor. This poster showed numerous, brightly colored Muppet knock-offs grinning broadly and circling another pseudo-Muppet in a lab coat, who pushed enthusiastically on the back of a sprawled, smiling foam patient. The caption said something like "Chiropractic Care is for Everybody!" Ariel spent several months visiting that office, receiving adjustments to treat his sciatica. Although his oncologist has since confirmed that Ariel likely did have a genuine and possibly unrelated case of sciatica in the hip where his sarcoma began to grow, the two problems are very linked in my mind "when Ariel was sick."
I hated sitting in that claustrophobic waiting room instead of finishing my workday later, because I knew my boss resented the time I took to drive Ariel to these sessions. I hated the chiropractor’s self-promoting pamphlets and his taste in magazines. Mostly I hated the horrible yelling fights that Ariel and I would have before each appointment as I rushed home early from work and then battled traffic to get us there, always late. He was in pain. The adjustments helped. How could I not take them seriously?
"Witch-doctors," I had said, when Ariel first asked me to find him a chiropractor. But the adjustments really did seem to help, and over several months he wound down from 3 appointments weekly to just one or even less, and we even resumed our outdoor, active hobbies. He took his chiropractor’s advice; he began exercising and dieting to lose weight and lessen the effects of the sciatica, and I did what I could to encourage him – we bought an exercise machine and he used it every day.
When the cancer pain first started, Ariel blamed a new device that the chiropractor had been using. "This pain is different," he said, "so it must be this stretching thing … it doesn’t feel like sciatica." But no, he hated doctors and didn’t want to see the orthopedist I suggested.
For several weeks the new pain got worse and then Ariel started falling. He used a cane when he went out, which he did as infrequently as possible. He was always angry because he couldn’t get around easily, and he became extremely defensive when I expressed any concern. This made me defensive, so we argued often about everything, not just his hip. But he told me one day between arguments that even the chiropractor had expressed bafflement at this pain’s stubbornness, and had considered consulting with a medical doctor as he could find no chiropractic cause.
Because Ariel never wanted to acknowledge that he was in pain, and I had no way of knowing the degree of what he felt, I decided I would call his bluff. I encouraged him to be social and insisted that we go out with friends pretty often, figuring that either the pain would fade (and we’d get some normalcy back) or that it would flare to the forefront and require him to ask for help.
I really would have preferred the former, but I got the latter in spades. Ariel’s sarcoma diagnosis started with an awful fall from a riser in a movie theater, and him whispering to me with total humility in the darkness, "I can’t get up." A friend and I wheel chaired him out and at home he somehow climbed our stairs, undressed and half crawled toward the bed, clearly agonized. But no, he insisted he didn’t need to go to the emergency room and that this pain would pass. I was furious and it was 2 a.m. "You’re not going to get any sleep tonight," I stated. "You can barely move. If I call the on-duty nurse," (our primary clinic had a 24-hour advice line) "and describe your symptoms, and if she says you should go, will you go?"
The Impending Diagnosis: Sarcoma
"Fine!" he winced. If I’m making myself sound rational and him irrational, then I should clarify. We were both thinking from our anger at this point … we were 24, our Friday night had really been no fun, and people our age did not have random, profoundly disruptive pains in their pelvises. We were stumped. So was the nurse. "Yes, sweetie, he should go to the ER," she said pretty quickly. "Tell him," I said, and handed Ariel the phone. He listened, exhaled, and said, "Okay I will."
That morning we actually wound up back at home, with Ariel on crutches after a vague dismissal from a bleary eyed ER doctor. "Maybe he has a hairline fracture. I can’t see anything on x-ray. He should take Motrin and stay off it." Could it really be a broken hip? Ariel was athletic and drank a couple gallons of milk each week. This seemed weird, but Ariel was perfectly happy to leave the hospital and we both just wanted to sleep. When he fell again and really couldn’t move afterward, at home two days later, our own clinic’s urgent care center was open and we went there. The in-house orthopedist took another x-ray and showed it to us both with a long face.
It was either cancer or an infection eating the bone. He didn’t know, and wanted to admit Ariel to the local hospital for some tests. We later learned that "some tests" was an understatement on par with "chemotherapy may cause some hair loss." But I am grateful to that doctor for telling us plainly that it was probably cancer. Ariel exhaled slowly, his brow furrowed from the pain. I cried, called the office to say I’d be out a few days, and followed the ambulance to the hospital.
So there we were, exhausted and extremely worried, and surrounded by old people. I learned later that the rare bone cancer responsible for Ariel’s mysterious pain, swelling and fever was called Ewing’s sarcoma, and that it most often affects individuals in their first two decades of life. Ariel was actually older than average, an adult and a minority. But on the local oncology floor where most patients arrived only after living several healthy, cancer-free decades he was another kind of minority – a novelty and the student nurses’ favorite.
The next week became a small eternity of pain and analgesics, heating pads and IV poles, handheld urinals and bright eyed trainees who loved having at least one patient their age — could they ask him a few questions? I ran interference for the poor guy, who was heavily drugged, still in extreme pain, and completely unwilling to assume guinea pig status. No, he didn’t want to talk. He wanted people to stop walking by his room; the vibrations hurt.
By the next weekend we had a tentative diagnosis and a transfer to Massachusetts General Hospital which is a very good place to have a very bad cancer. But that week at our small local unit, and the months that led up to it, were a particular kind of traumatic. To this day when I feel especially helpless, I see that poster full of smiling puppets. I try to use that vivid memory to remind myself that things truly have improved, that while my helplessness is sometimes real I can also find tangible ways to make things better.
If someone you love has recently received a cancer diagnosis you are probably getting to know a few favorite parking spots at the hospital that are safe and available around, say, 4 in the morning. Maybe the nurses know you pretty well and let you use their microwave. Maybe you are, like I was, taking countless disheveled midnight elevator rides on which you get mistaken for a misplaced resident.
Maybe you also hear that shallow, pained breathing and see that particular kind of preoccupied expression on your loved one’s face when you close your eyes. And maybe this would contribute to your insomnia, if you had time to sleep much anyway. Those first days or weeks of hospitalization that lead up to treatment, the diagnostic process as it relates to sarcomas, can be very hard on caregivers because this is a very uncertain time.
I mentioned this paradox in June’s ESUN — that while we are learning to yield and notice change, our loved ones often count most insistently on us caregivers to represent stability in a shifting world; this process is where that most tangibly begins. In ways our position is a very privileged one – we gain an intimate knowledge of sarcoma treatment without having to undergo its brutalizing effects. We stop, if we want to help the people we love, fearing cancer because we start understanding its day-to-day expressions.
People who have never personally encountered cancer seem to see it two ways. They fear a demon disease that tears down everyone it touches with horrifying efficiency, or they dismiss cancer as no big deal in this modern age – preventable, anecdotal, casual medicine. In fact cancer is not one disease but more accurately a whole branch of medicine that studies several classes of cellular mutation. More and more universities have started introducing oncology under the apt heading "neoplasms," acknowledging that all cancers are, at the simplest level, merely new cells.
Misconceptions
Many caregivers find themselves addressing uncomfortable misconceptions in friends, family and coworkers. "How long does he have," can share equal time at the water cooler with, "why is this such a big deal?" In his excellent essay "The Median Isn't the Message," biologist and cancer survivor Stephen Jay Gould derides the emphasis many people place on cancer-related survival statistics. He describes gaining hope, instead, from a technical understanding of his cancer and from a comprehensive consideration of the factors that affected his own care and survival.
Sarcomas are cancers that consist of mutated connective tissue cells. They are rare, which decreases the volume of funding and publication dedicated to their research. The cells that form sarcomas are primitive, which means they are very disorganized and can be harder to anticipate than some other cancers. Their treatment often requires an aggressive and interdisciplinary approach consisting of a combination of chemotherapy to fight any cancer cells moving through the body with a localized treatment such as surgery or, less often, radiation.
Through clinical trials the medical community has established protocols of treatment for various sarcomas. These change as new research provides additional insights. But existing sarcoma protocols can be highly intensive. Oncologists require extensive patient information to adjust a protocol for maximum effectiveness. As a result of this necessity and because sarcomas' rarity and primitiveness can make them difficult to identify, oncologists employ a specific series of tests to diagnose sarcomas. Click here for helpful summaries of these tests and for additional sarcoma-related information.
Tests, Tests, Tests
Your loved one may undergo additional tests too, as doctors rule out other possible ailments with similar symptoms. But the procedures below are the ones that almost every sarcoma patient should have before starting treatment, or to learn more about his or her disease during treatment. Many patients will undergo some of these tests more than once, either to confirm results or to assess progress later on.
Procedure: Medical History
How it works: Before doing anything else, a doctor or nurse will typically ask a patient many questions about his or her symptoms and health-related experiences such as pregnancies, fitness habits, and patterns of alcohol or drug use. The person taking the history will likely also want to know as much as possible about the health of the patient's immediate family.
This information is especially valuable because rare diseases such as sarcomas often present only vague symptoms. A thorough history can put confusing pieces of the puzzle in order, eliminating some possibilities and helping everyone look in the right place. It can also help greatly with pain management. A history of alcohol or narcotics use, while it may not be something easy to bring up, can significantly affect tolerance to important medications.
How you can help: Make sure your loved one is as comfortable as possible with the doctor or nurse taking his or her history. It's important to realize that all medical professionals are legally required to keep the information they gain in history interviews confidential, specifically so that they may have the facts they need to come to life-saving conclusions.
If your loved one isn't speaking clearly or if the doctor or nurse has trouble understanding the context of important statements, tactfully and calmly help clarify. Try to keep your loved one relaxed - holding a hand or just being a friendly face in the sterile exam room can provide comfort.
Procedure: Physical Exam
How it works: After asking questions, a doctor or nurse practitioner will need to examine the symptomatic areas of your loved one's body. He or she may do things you've seen before in a regular physical exam, like feeling for swollen glands or testing reflexes. The practitioner will also want to palpate, or gently touch and press, the uncomfortable areas.
The three physically obvious symptoms of most sarcomas are pain and swelling at the tumor site and a low-grade fever. A physical exam allows a doctor or nurse to evaluate these symptoms and look for "signposts," for other potential issues, like swollen glands that may indicate infection.
How you can help: Your loved one may ask you to leave the room during the exam. He or she will need to remove some clothing and so may want privacy. Respect this wish and do not take it personally. Whether you stay in the room or not, help doctors and nurses understand that this patient is in pain. They should take this seriously whether or not they have any clear understanding of the pain’s cause. If you do not feel that they are reacting with appropriate consideration, don’t be afraid to mention this.
Procedure: Blood screening
How it works: A nurse or phlebotomist (a specially trained lab technician) will insert a syringe into the patient’s vein, usually one in the arm. The practitioner might tie a rubber tourniquet above the insertion point first, and he or she might also ask the patient to make a fist to help the veins stand out. The practitioner will draw blood through the syringe into vials, and then will remove the needle and cover the site with a bandage or some gauze.
Chemicals in the blood can function as valuable indicators (called markers) of different conditions. Some cancers elevate the levels of certain markers, so a blood screening may be one of the first strong clues that a particular cancer, rather than an unrelated condition, is causing otherwise vague physical symptoms.
How you can help: If your loved one seems anxious be a good distraction – getting blood drawn usually doesn’t take long. Also, if he or she is taking blood thinners make sure the technician is aware of this before getting started.
Procedure: Computerized or Computer Aided Tomography (CT or CAT) Scan
How it works: A CT scan takes a detailed x-ray of one plane, or flat dimension, at a time while blurring out all other planes in view. A camera feeds these pictures to a computer, which compiles them to produce a three-dimensional image that is both more detailed and, for sarcomas, more legible than a regular two-dimensional x-ray. A CT scan can take up to half an hour or longer, depending on the area that the machine is capturing, and the patient will need to lie quite still.
A recorded voice may help the patient control breathing so that respiration does not blur the images. For CT scans of the pelvis or abdomen the patient may have to swallow contrast, usually a chalky, thick liquid called barium sulfate, twice before the scan to help the machine take a clearer picture of these very hard to see parts of the body.
How you can help: Because CT scans use x-rays, you will not be allowed in the room while one is underway. But you can help your loved one get as comfortable as possible before the scan. CT scans might require your loved one to lie in a painful position for accuracy. Ask if he or she would like to request breakthrough (supplemental) pain medication before going into a scan, if this will be the case. Your loved one may wish to control his or her fluid intake before the scan if bladder control might be a concern, too.
Procedure: Magnetic Resonance Imaging (MRI) scan
How it works: MRIs do exactly what the name describes – they use radio waves and magnets to produce an image through sound vibrations, instead of through light vibrations like x-rays do. Because the MRI uses magnets, the patient will have to remove all metal and magnetized surfaces – jewelry, hair clips, credit cards, etc. – before the exam.
Your loved one should tell a technician if he or she has any metal internally, too. MRIs often take even longer than CT scans because the technology moves differently and physicians almost always want many images from different angles. MRIs usually require the patient to lie very still in an enclosed space. They can feel a bit warm and may seem loud when they operate.
How you can help: As with a CT scan, discuss breakthrough pain medication well before the MRI itself. Make sure your loved one understands how this test will feel and how long it may take. Practice calm, slow breathing together and suggest visualizations that might help your loved one relax inside the MRI. Ask the technicians if they will provide ear plugs or allow a patient to listen to music during the test; many do. If your loved one has claustrophobic tendencies ask if anxiety medication, usually Ativan (lorazepam), might be helpful.
Procedure: Gamma bone scan (scintigraphy)
How it works: The patient receives an injection of a radioactive isotope two or three hours before the scan. This isotope emits gamma radiation as it moves through the bones and deteriorates. A gamma camera records images of the body as this occurs; "hot spots" like tumors show up more brightly than healthy bone tissue because the isotope moves through different tissues at different rates. Because the gamma bone scan can show the locations of various tissue types but cannot explain what they are, they are most helpful in conjunction with other scans like CTs and MRIs to provide the best diagnostic portrait. A full-skeleton bone scan will take about an hour as one camera moves gradually over the whole body. The patient can speak and move slightly the areas of the body that are not currently under the camera, but will have to stay mostly still.
Sarcomas can affect any connective tissue. Your loved one will not need a gamma bone scan if his or her sarcoma is not in or near a bone, unless there is some concern that the cancer has metastasized (spread) into bone. Different sarcomas have different patterns of metastasis, so this test may never be relevant for your loved one. But don’t be afraid to ask his or her oncologist if a gamma bone scan would be helpful.
How you can help: This is another lengthy exam, but usually you will be able to stay in the room. If your loved one is using a PCA (Patient Controlled Analgesic) delivery system – a "drug button" that lets him or her administer pain medicine as needed – talk about whether he or she would like you to hold this button and push it upon request, during the scan. You can also just generally be a comforting, distracting presence. I found that humming "Radioactive Spiderman" lightened the mood considerably.
Procedure: Positron Emission Tomography (PET) scan
How it works: A PET scan, like a gamma bone scan, records the movement of an injected radioactive isotope as it passes through different tissues. Positrons are very tiny particles and scanning their breakdown allows a PET machine’s computer to read glycolysis, the process cells use to digest sugar. Cancer cells can show up more brightly than normal tissues on a PET scan because cancer cells digest inefficiently, compared to healthy cells. Unlike most other scanning techniques, PETs can often discern between healthy tissue, living cancerous tissue, scar tissue and dead tissue such as tumor that has responded well to treatment and will be harmlessly absorbed by the body. Although relatively few patients will have PET scans during the initial diagnostic process, I mention them here because a PET can be a very helpful tool for determining treatment progress later on. If you hear your loved one’s doctors say that they cannot tell what kind of tissue is causing a problem, the two best tests to ask about are the PET scan and the biopsy, which I’ll describe below.
How you can help: PET scans are slow and thorough – they can take up to three hours and the patient will have to lie quite still. Typically you will not be allowed in the room during a PET scan but you might be able to bring tapes or CDs that the technicians will play to help your loved one relax. As in preparing for other lengthy exams you can help by discussing pain management, anxiety and any bladder concerns.
Procedure: Biopsy
How it works: A biopsy is a surgical procedure that removes a piece of the tumor so that pathologists may determine very specifically what kind of cancer is present and how far along the disease has progressed. A fine needle biopsy is the least invasive of these but also can be the least accurate. A core needle biopsy takes a bigger sample – it is therefore more disruptive to the body but also gives the pathologists more to study. An excisional or incisional biopsy involves making a cut into the body and then removing either a significantly sized piece of the tumor or the whole thing, if it is small enough and conveniently placed.
For both kinds of needle biopsy a doctor will administer local anesthesia to control pain and may perform the procedure itself in a hospital room or an exam room. A bone marrow biopsy is a third kind of needle procedure. If your loved one may have a bone sarcoma, then he or she should have a bone marrow biopsy during the diagnostic process to determine whether the cancer has metastasized into the bone marrow. Bone marrow biopsies are often particularly painful, but the presence of cancer in the bone marrow is a profoundly significant factor that makes this test vital in such cases.
Excisional and incisional biopsies are more involved procedures that can be truly surgical in nature. If your loved one’s oncologist has ordered this procedure, talk with your loved one and the surgeon who will attend to see exactly what it will involve.
How you can help: Work with your loved one to find a comfortable position in which he or she can lie while a doctor performs the biopsy – do this ahead of time. Ask what kind of anesthesia the doctor plans to use and make sure your loved one is aware of its effects. Versed, one drug commonly used in conjunction with analgesics during biopsies, affects memory and inhibitions during its use and it is important that your loved one understand this.
Biopsy: For more information, see the collected excerpts from several ESUN articles that discuss biopsies.
Other Procedures
Part of diagnosing a sarcoma is ruling out everything else. Physicians may order anything from an electrocardiogram to a tuberculosis test – Ariel had both. Because sarcomas present potentially ambiguous symptoms, responsible doctors will investigate all possible solutions before putting a name on the problem at hand. Try to be patient with this and keep communication strong between yourself, your loved one, and the diagnostic team so that you have the best possible idea of what tests to expect from day to day. Patience will be easier if your loved one is comfortable, so make sure that everyone makes pain management the first priority.
Dr. Andrew Billings, head of Massachusetts General Hospital’s palliative care team, recently explained to me that, "it doesn’t matter what’s wrong with you, the pain is a sign that something is wrong and should be attended to. The issue of treating pain is related to but separate from receiving a clear diagnosis."
Watching someone you love in extreme pain is the kind of nightmare than many caregivers never quite shake. Your loved one may cry, panic, retreat emotionally, and express anger or even blame. It can help to tell him or her, "I know you’re angry, and I’m angry too. But please be angry at the cancer, and fight it instead of me." Try to keep tension or resentment from escalating. Remember that there are lots of pain management options available and you are working with a team to find solutions.
At this point you and your loved one may have faced primarily interventional questions – how to cope with a sudden loss of mobility or of other important functions. Or you may focus mostly on curative questions – how to identify and treat the disease. But another inquiry often hangs heavily in the air throughout the diagnostic process - how do we stop this pain?
Most large, regional hospitals and teaching clinics have on-staff palliative care teams. Interdisciplinary groups of physicians who treat seriously acute or terminal conditions symptomatically to improve quality of life, these teams strive to, as Dr. Billings says, "understand the suffering experience." Calling in the palliative team certainly does not mean giving up on a return to healthy life for your loved one. Instead this team will work with his or her other doctors and will solve what may seem like the most pressing problem at hand – how to manage the pain.
Managing Pain
Managing pain may not be the same thing as ending it completely. A team should work to find the right balance between comfort and cognizance that will allow your loved one to carry out life’s vital functions – sleeping, eating, moving around, etc. This balance is different for everyone. The same characteristic defines great palliative specialists, caregivers and network news anchors – great communication skills under pressure. Any medical professional trying to alleviate someone’s pain will usually ask, "on a scale of 1 to 10 if 1 is no big deal and 10 is the worst you’ve ever felt, where is your pain?"
Bear in mind that although good palliative care will bring relief for your loved one and for you, this process will also bring some challenges of its own. First and foremost on a practical level, all the best painkillers cause constipation, so do not let your loved one dismiss the need for laxatives. Additionally it can be scary to see someone you know very well under the effects of strong opioids or narcotics. Your loved one may seem incoherent or distant, or simply like a different person. Although he or she may seem "altered," the drugs’ effects are temporary and very worthwhile. "People who are taking these for real pain," Dr. Billings stresses, "do not enjoy the experience or seek it out recreationally."
Because these cancers are rare, most sarcoma patients receive their care at large or prestigious hospitals that have seasoned palliative teams on staff. But if you are currently at a smaller facility, you may need to communicate pain relief needs to doctors and nurses who are not familiar with the particular intensity of cancer pain, which can rapidly build to uncontrollable levels – especially before treatment of the cancer begins.
Dr. Billings suggests this mentality for anyone struggling to solve pain issues while facing an acute diagnosis like sarcoma. "Take the pain seriously and expect other people to take it seriously. Pain is not good for you; there is no virtue in bearing it. Living well regardless involves finding good pain meds. Serious doesn’t mean you should suffer… don’t resign yourself."
In those first weeks, when pain control and diagnosis motivated our every move, nurses would occasionally look across Ariel’s bed and ask me how I was doing. I really had no idea. The question made my face crumple, and I would try to hide that by turning toward the window. But, in the following months. I did learn some healthier ways to face the situation.
Cancer-Pain.org has been developed by ACOR (Association of Cancer Online Resources) with input and advice from patients, caregivers and an Advisory Board of health care professionals dedicated to providing the most advanced cancer pain relief. Their aim is to help cancer patients receive the pain treatment they deserve. The site offers in-depth information on understanding cancer pain, cancer paint treatments, a care giver’s guide, and an “ask the experts” section.
Additional Pain Resources
Pain Control from the National Cancer Institute
Pain Control: A Guide for People with Cancer and Their Families from the American Cancer Society
Suggestions
Here are my Do and Don’t suggestions for acute caregiving throughout the diagnostic process.
Do not refuse to meet your own needs. It’s possible your loved one isn’t eating or sleeping much. He or she doesn’t need to drive right now, or go to work, or take care of someone very sick. You do. So do ask for help when you need it. Swallow your pride, swallow a sandwich, and save your strength for more productive pursuits than martyrdom.
Also do not take it out on the medical staff. "It" might be frustration with your loved one’s situation, or with your own. If you are working with a doctor or nurse who legitimately refuses to treat you and your loved one like valued members of a problem solving team, then by all means demand a change. But if you know that everyone involved is working toward the same goal, then try to remember this sense of partnership when you feel backed into a corner. Most doctors and nurses genuinely want wellness for their patients, but not all know how to communicate. So be the bigger person when you need to, and reach out.
"Feel free to step on toes," says Dr. Billings, when you do need to advocate. "It helps to have good social skills to get the right attention. Ask and pressure without inducing anger."
"People should feel comfortable," he continues, "asking for second opinions, extra visits, etc. The mantra (for doctors) – listen to the patient and believe the patient. Allow the patient to talk. It’s not what you say that’s important… maybe not fixing things right away but giving people time, trying to understand things. There’s a loneliness about suffering; knowing that someone’s listening does help. Problem solving for a doctor can mean solutions themselves, but for caregivers it means knowing whom to call and how to get ideas."
Do work closely with the oncology team to make sure they are performing the right tests, consulting the right experts, and making good use of the most current information to heal the person you love.
Next Steps
This information will help the team reach the right conclusion so that they may diagnose your loved one’s sarcoma accurately and plan the next step. In the next issue of ESUN we’ll discuss beginning treatment. I will work with a physical oncologist to explain the techniques that fight sarcomas and to highlight some actions you can take to help maximize their effectiveness.
As you and your loved one move between diagnosis and the start of treatment, some of the surreal urgency that accompanies this initial period will fade. Sarcoma protocols often require significant lifestyle shifts for patients and those closest to them. Regardless of any final outcome, sarcoma will continue to change you both. A willingness to live within this process, to accept the presence of the unknown as you seek to learn more, can become a caregiver’s greatest source of strength.
Summary of Dr. Billing’s Recommendations "It doesn’t matter what’s wrong with you – the pain is a sign that something is wrong and should be attended to. The issue of treating pain is related to but separate from receiving a clear diagnosis." "Understand the suffering experience." "People who are taking these (opioids or narcotics) for real pain," Dr. Billings stresses, "do not enjoy the experience or seek it out recreationally." "Take the pain seriously and expect other people to take it seriously. Pain is not good for you; there is no virtue in bearing it. Living well regardless involves finding good pain meds. Serious doesn’t mean you should suffer… don’t resign yourself." "Feel free to step on toes, when you need to advocate." "It helps to have good social skills to get the right attention. Ask and pressure without inducing anger." "People should feel comfortable asking for second opinions, extra visits, etc. The mantra (for doctors) – listen to the patient and believe the patient. Allow the patient to talk. It’s not what you say that’s important… maybe not fixing things right away but giving people time, trying to understand things. There’s a oneliness about suffering; knowing that someone’s listening does help. Problem solving for a doctor can mean solutions themselves, but for caregivers it means knowing whom to call and how to get ideas." |
Questions and Answers
This month our Caregiver's Q&A focuses on the tests described earlier in the article and discusses how you can make use of the results and where you may find additional information.
1. Where can I learn more about the uses my medical history and what a care provider might ask?
Click here to read Dr. Shmerling's thorough description of a medical history and why each component matters. Click here to read specific guidelines on discussing a pain history.
2. What does a blood test reveal and how can I learn to understand the results?
Click here to read a detailed discussion of the different blood counts that physicians use to gauge health during chemotherapy or radiation therapy.
Oncologists may also look for specific chemical markers that indicate the presence of certain cancers. Seek information particular to your loved one’s sarcoma to learn more about the markers that might relate. This site lists markers relevant to Ewing’s sarcoma – it is intended more for doctors than for caregivers but will give you an idea of blood tests’ role in the diagnostic process.
3. Where can I learn more about the imaging tests you described in your article?
The Intelihealth website mentioned earlier in this article contains useful descriptions of all these procedures. Read more about the various procedures by clicking on the name of the procedure: CT Scan, MRI Scan, Bone Scan, and PET Scan.
4. How will I learn the results of any tests my loved one undergoes?
It’s important to remember that all test results are confidential. Your loved one’s doctor is required to share the results with his or her patient, but may not disclose them to you without your loved one’s permission. Talk to your loved one about how involved he or she would like you to be in this part of the process, and explain that it will be easier for you to offer support if you understand the situation thoroughly. Whatever the outcome of this conversation, respect your loved one’s choices regarding privacy.
If you are authorized to learn test results, your loved one’s oncologist will likely go over them with both of you during daily rounds if your loved one is an in-patient, or will go over them during periodic check-ups if your loved one is receiving out-patient care. Make sure the oncologist understands that you and your loved one want him or her to make you aware of these results and that for both of you this is an important part of taking an active role in treatment. You can also ask at the time of an appointment for any type of test when the results will be ready, and then follow up with the physician who requested the test after an appropriate duration.
5. Will my loved one and I receive copies of test results?
Most hospitals do not provide patients with detailed copies of results as a matter of course. However, these are very important if you are consulting doctors in more than one office at a time – moving between a regional cancer center and a local provider, for example. Your loved one’s physical oncologist will have access to all test results and will be able to procure copies for you. Make sure you give the oncologist’s office adequate time to prepare these, or let the staff know if your need is truly urgent.
A Closing quotation "They turned him in her arms an eagle, |
V1N4 ESUN Copyright © 2004 Liddy Shriver Sarcoma Initiative.