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Posts with tag need

What tests do we really need?

Wouldn't it be great if we could receive full-body scans every year to check for early signs of cancer and other disease? Even if possible and affordable -- right now, scans cost about $900 -- it still wouldn't be such a great idea.

Full-body scans often result in false alarms. People with harmless abnormalities may end up facing more tests, more risks, and more worry in order to rule out illness. The scan itself can present health hazards too. It exposes patients to more radiation than a chest X-ray and could slightly increase the risk of cancer, especially for those scanned every year.

How do we know, then, if something has gone awry in our bodies? Well, we can do our self-exams -- breast exams, testicular exams, skin exams -- and we can report for annual check-ups. We can respond to symptoms we experience -- if headaches are bothersome and persistent, your doctor may prescribe a head scan -- and we can pursue tests and screening that we really need for cancer prevention and early detection. Here are just a few:

Continue reading What tests do we really need?

Free teleconference: Follow up testing, what you need to know

Living Beyond Breast Cancer will hold a free teleconference, Follow-up Testing: What You Need to Know, from 12:00 p.m. to 1:30 p.m. Eastern Daylight Time (EDT) on Thursday, August 16.

Speaker Virginia F. Borges, MD, will discuss follow-up testing after initial treatment, including follow-up testing guidelines, insights into future tests, the uses or limitations of screening tests and the emotional impact of follow-up testing. She also will explain the need for routine follow-up for other treatment-related health matters, creating a plan to monitor overall health and the role of follow-up tests for women with advanced (metastatic) breast cancer.

Dr. Borges is an assistant professor of medicine at the University of Colorado Health Science Center. Dr. Borges specializes in the treatment of breast cancer and her research interests include the study of new biologic therapies for breast cancer, development of cancer vaccines and improving the quality of life of people affected by breast cancer. In addition to her clinical practice and research efforts, Dr. Borges volunteers as a medical facilitator for Casting for Recovery.

This free program will feature a presentation by the speaker and a 45-minute question-and-answer session with participants. Participants can listen over the phone or use their computer.

To register, visit Living Beyond Breast Cancer's website at www.lbbc.org or call (610) 645-4567

Sunday Seven: Seven ways to help

My friend -- who has a friend newly diagnosed with brain cancer -- greeted me at the door the other day and asked with a sense of urgency, "How can I help?"

"Help your friend?" I asked.

"Yes, she said, unsure of what she might say or do in this time of great difficulty for everyone involved.

I told her a few things. And then I thought of some more. It wasn't terribly easy to come up with these ideas. Because even though I myself was on the receiving end of help during my cancer journey, it's still hard to imagine what an individual wants or needs -- or doesn't want or need. But here's what I've got to offer.

I hope this helps my friend.

I hope it helps you too.
  • Allow your loved one to take the lead. If you sense this person wants to talk, then talk. If you sense talk is not welcomed, then don't talk. To determine whether or not your friend or family member wants to discuss cancer, approach the topic and judge the response you get. I know I can usually tell if someone is willing to open up -- typically the conversation just flows -- and when someone is putting the brakes on chit-chat -- typically the conversation falls flat.
  • If talk is not in the cards, then consider an offer of food. Sometimes actions speak much louder than words. So think about calling a restaurant in your friend's town and ordering a meal to be delivered right to the door. Most eating establishments accept credit card numbers over the phone so location should be a non-issue. Even those deep in despair need to eat, and taking away the chore of cooking and cleaning up can be quite a gift.
  • If the gift of food is not up your alley, how about sending a small gift, like a candle, a pair of cozy socks, a grocery store gift card, a music CD, a gift certificate for a spa. You name it, your special something might brighten the day.
  • If you live near your loved one and have some free time, offer to drive to appointments, visit during treatments, pick up kids and entertain them for the day, clean house, cook, and clean up dinner. Try to be very specific with your offers. Say, "I'd like to pick up your kids tomorrow at lunch so you can take a nap" or "I'm coming over on Sunday to rake leaves." These offers are easier to accept than the "call me if you need anything" kind.
  • If a quick stop at your loved one's house is possible, drop off a book on the front porch or set some pretty potted flowers by the door. Or do both. Then walk away without saying a word. Let your help take your friend by surprise.
  • When you do have the chance to talk, avoid guiding the conversation with your own thoughts and advice, unless requested. Saying, "Everything will be OK," for example, may not be true. Assuring your friend she will sail right through chemotherapy may backfire if nausea and fatigue are just down the road. Stating, "it's OK, your hair will grow back," doesn't really help those living with the horror of hair loss. So stay away from promises and predictions and stick to the present. Ask questions, listen, and paraphrase back what your friend has shared. These are basic counseling techniques. The premise is that allowing the person to work through the issues is more important than what we can do to directly help.
  • Don't forget about the good old greeting card or short note that lets your loved know how much you care. Let the card say it if you wish to avoid writing and then add an address, a stamp, and send your support on its way.
  • This makes eight -- so much for sticking to my Sunday plan -- but I must share this too: Don't forget about your loved one after months and even years pass by. Initial diagnoses are tough and treatments are tough too. But as your friend survives each day, remember to check in. Cancer is a life-long battle for many. Support and assistance may be just as valuable a year down the road as it is on day one.

New Zealand trust funds Herceptin treatment

Catherine Jones has breast cancer. And she needs Herceptin in order to fight for her life. But Herceptin, a targeted drug used to treat HER2 positive breast cancer, is very expensive -- and for some time, Jones was not sure how she could possibly pay for this potentially life-saving therapy.

Jones, 49 and a resident of New Plymouth, New Zealand, decided to ask for help. So she set up the Herceptin for Catherine Trust to raise the $80,000 needed for the treatment. In less than four weeks, she received $64,600 in donations.

Jones is overwhelmed by the support and says she will continue to use the trust to raise funds -- not just for herself, but for other women in need.

The New Zealand government and its drug-buying agency Pharmac does not fund Herceptin. So most breast cancer patients who medically qualify for the treatment have no means of receiving it.

Jones, who is about to receive her third of 17 Herceptin doses, thinks she can help. She is surely off to a great start.

Have wig, will share

I'm sending off my wig to a new friend tomorrow. It's all wrapped and boxed and packaged and ready to travel from Gainesville, Florida to the east coast of the sunshine state where it will land in the hands of a young women newly diagnosed with breast cancer.

This new friend found me here -- on The Cancer Blog -- and we have been corresponding back and forth via e-mail about all sorts of cancer topics -- like surgery and pathology and chemotherapy and most recently, wigs. She asked me just the other day what type of wig I wore after I lost my hair to chemotherapy. I told her I didn't like full wigs, that they felt too unnatural, that I feared my little boys would rip them off my head in the middle of the grocery store. I told her I opted for underhair -- a hairfall of sorts made of plain, white, soft cotton on the top with hair hanging only from the sides and back. It is worn with hats, to cover the cotton part, and it feels quite secure -- although it did sail off my head at the beach one day, compliments of a strong breeze.

I told my new friend that I was completely happy with my choice. I told her the underhair is made of human hair and that customers get to choose the color, texture, length, and size. The wig can be washed, dried, curled, styled, and cut. It looks so real that some people didn't even know chemotherapy took my hair. It was the perfect disguise for me.

I led my new friend in the direction of this wig -- www.hiphat.com -- where she could order her very own handmade underhair. I told her to ask her doctor for a prescription for a cranial prothesis and to see if her insurance company would reimburse her some of the cost of this fairly expensive wig option. And then I realized it would be silly for her to do all this work and spend so much money when my wig is tucked away in my closet, sitting pretty on a nice styrofoam head, doing nothing more than collecting dust.

I don't need my wig anymore. But my new friend does. So tomorrow, it begins traveling her way. And she can keep it for as long as she needs it, for as long as I don't need it. Which I hope is forever.

Jingles and jangles brighton third year of survival

I am jingling and jangling with charms around my wrist once again. Ever since I was diagnosed with breast cancer, my friend Nicole has sent me a Brighton breast cancer bracelet. My very first bracelet arrived in 2004, and I wore it proudly. My second bracelet arrived in 2005 and took the place of the first. And now, as I enter my third year of survival, my 2006 Power of Pink bracelet dangles from my arm.

This year's bracelet features a heart-shaped locket. Other charms -- designed to represent stepping stones to recovery -- feature key survival terms. Brighton tells it like this -- "When we accept, we open the door to trust and find love that will heal. Along the way, we learn to be the inspiration." And there are still more charms -- a breast cancer awareness ribbon signifying a fight for the cure, a four leaf clover to assure luck is on our side, silver beads for richness, clear crystals for truth and purity. And still, there are more.

Brighton recommends we all make a difference in the breast cancer crusade. Some may choose to chip in by contributing financially. Some may volunteer. Some may lend a sympathetic ear to others in need. Some may purchase and wear the 2006 Power of Pink bracelet -- proceeds benefit breast cancer research -- and this one simple act will send an empowering message to women everywhere.

Cancer patients always need blood

M.D. Anderson Cancer Center says that patients require approximately 100 units of red blood cells and 400 units of platelets everyday. The M.D. Anderson Blood Bank is a leader in the field of transfusion medicine.

Giving blood provides hope to cancer patients. To donate blood for transfusion for another person, you must be healthy, be at least 17 year's old, weigh at least 110 pounds, and not have donated blood in the last 8 weeks.

Cancer survivors that would like to donate can if their cancer has been treated successfully and it has been at least five years since treatment was completed and there has been no cancer recurrence. Some low-risk cancers including squamous or basal cell cancers of the skin do not require a five year waiting period. If you have had leukemia or lymphoma including Hodgkin's disease, you are not eligible to donate. Go to eligibility criteria to find out more. You can also visit the Red Cross.

Clinical trials running out of cancer patients

When considering treatments for cancer, you want to hit it hard and wipe it out. Sometimes, if you don't get it right the first time, the second try at treatment finds you battling a cancer that has spread. ABC News John McKenzie ran a story Doctors Grapple with Lack of Volunteers that featured lung cancer patient John Ray facing a choice of a standard treatment or enrolling in a clinical trial to test two drugs that researchers believe might be successful for lung cancer treatment.

As Ray explained his choice by saying, "The standard treatment has had good success, and I just didn't want to risk not being able to have that."

According to researchers, for the more than 400 cancer drugs now in clinical trials, only three percent of cancer patients participate in cancer clinical trials. They state that the reason there are not higher numbers of cancer patient participants enrolled in clinical trials is because patients are simply not aware there is a clinical trial they could be enrolled in. Other reasons include risk and convenience.

I would have speculated that the number one reason more cancer patients are not enrolled in clinical trials, is that they make the same decision that Ray made, choosing a known treatment. Taking a chance on an unknown, at a moment when timing might mean everything, is life-threatening risky business. We all want better drugs and better treatments, but in the same spot, would you choose an experimental drug or a standard treatment to fight your cancer? It's a difficult choice.

Volunteers coming up short for cancer clinical trials

Just before my treatment for breast cancer began and during a consultation about what chemotherapy drugs I was about to receive, my oncologist stepped away from my exam room to check on something. When she returned to the room, she told me that she was determining whether or not I qualified for a clinical trial. I had no idea what this meant at the time. All I knew was what she told me -- that my prognosis was too good at that moment to qualify for anything currently under study. I did not fit a profile for anything. I was not a candidate for a clinical trial.

I now know that clinical trials are a critical component of research -- they validate a drug's success or weakness and they provide hope for many who may be at the end of their treatment rope and need something new to consider. A clinical trial is a comparison of standard treatments to newer treatments in an effort to discover better methods for the diagnosis and treatment of cancer. Doctors, scientists, and other health professionals conduct these tests according to strict guidelines set by the Food and Drug Administration -- which establishes mandatory guidelines to ensure the maximum safety of the patient.

Clinical trials rely on volunteers -- and sadly, there is a current shortage of patients willing to participate in trials. Experts say that, for the past few decades, just five to 10 percent of all cancer patients in the United States have joined a clinical trial. There is an urgent need -- because the demand for willing, eligible participants far exceeds the supply. Some experts are even recommending that the small pool of candidates that does exist be rationed to only the most important cancer studies -- leaving other studies with no hope for completion. There is no good solution in sight. But the reasons for the shortage are becoming apparent. It's not that patients are unwilling to join. It's that they are unaware, uninformed, not even sure this opportunity is possible -- because doctors are not suggesting trials to their patients. Treatment on a protocol is more demanding for doctors than routine medical care. And it costs doctors to submit to a trial. And trials burden doctors with regulations and paperwork. And some doctors worry about litigation if something experimental goes wrong. So they often don't approach the topic -- and the result is that a wonder drug may sit in a dark freezer because there are not enough people to test it. This potential wonder drug may never show promise, may never save a life, may never see the light of day.

So I guess my oncologist was ahead of the game in this matter -- she compared my diagnosis and prognosis with the needs of all available clinical trials and found that there was not match. Had she not done this, I would have never thought to ask about the possibility -- which is exactly what patients should do instead of waiting for a doctor to make the suggestion. Because it may never happen.

For more information on clinical trials, please visit the Coalition of Cancer Cooperative Groups.

Breast cancer persona slipping away with passage of time

I've been wearing a breast cancer bracelet that jingles with charms in the shapes of hearts, with inspiring little messages like Go with your heart. One of the heart charms is a watch. My friend sent me this shortly after my breast cancer diagnosis. I love this bracelet. So I was sad the other day when the glass piece covering the watch somehow cracked and shattered. I only realized this when I tried to check the time and learned that my watch was not actually telling time anymore. So I went for my back-up -- another watch, exactly the same and also given to me as a gift. I replaced my old watch with the new watch and then days later, my new watch was not working. I think water got inside the glass and damaged the battery or the mechanisms -- or something. I'm sure I could repair the watches -- and I considered this -- but then it entered my mind that maybe this is a message that I am okay now without all my breast cancer gear.

Continue reading Breast cancer persona slipping away with passage of time

Test may determine who needs chemotherapy

I clearly remember reading a pamphlet about a test that might determine with pretty good accuracy whether or not I would benefit from chemotherapy for breast cancer. This was more than a year ago and I hoped, prayed, wished upon a star that I would be a candidate for this test -- and that the result would reveal that I did not need the toxic chemotherapy that I feared with every fiber of my being. But I did not qualify for this test because it's only effective for tumors that are estrogen receptor positive -- and I am negative. So I received chemotherapy and while I've survived it, there still remains an important issue -- did I need it?

Continue reading Test may determine who needs chemotherapy

Life isn't getting any easier in the Big Easy for cancer patients

USA Today features a story, Cancer makes life harder in the Big Easy, about the fact that life isn't getting any easier for cancer patients in the long-term aftermath of Hurricane Katrina's destruction of their soulful and spirited New Orleans. While some of the residents have returned to a place that is more than just a place, cancer patients still must leave the area to find cancer treatment. Before Hurricane Katrina, cancer treatment services were often a few miles away -- now the same treatment is sometimes hundreds of miles away. Charity Hospital, which treated many of the city's poor and uninsured, has been shut down since the storm. The same residents who could not leave right before the hurricane hit because they had no transportation, are now faced with the challenge of how to get to cancer treatment that can be miles away -- with no transportation.

Donna Williams, director of the Louisiana Cancer Control Program, and her staff, have been asking doctors for the names and addresses of cancer patients, then going to the last place they lived. If no one is there, they leave a sign tacked to the front letting the person with cancer know there are people out trying to find them -- to help them. "We put signs on whatever was left of their homes, on piles of rubble sometimes, hoping people would come back," Williams says. "If they didn't come back, hopefully a friend or neighbor would see it." Williams worries about the cancer patients she can't find. Williams, and the others like her, are the best of who we are as a people -- and sometimes better than some of us ever get a chance to be. They are the angels in our midst.

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