LaurenH
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Posts posted by LaurenH
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Tybris,
Thank you for sharing your story. I have no doubt that your positive energy made a tremendous difference for your mom and that you will continue to make a positive impact on the lives of many, many others.
With gratitude,
Lauren
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Digital Community Manager
LUNGevity Foundation -
On 12/5/2016 at 8:28 PM, shari said:
Thank you so much for the encouragement. I saw the pulmonologist today and he basically said the same thing and actually congratulated me for doing so well post of and not requiring any additional therapy. He is referring me to MD Anderson to see if there is any gene typing that can be done. He's awesome. I have worked with him for years and trust him wholeheartedly.
Thank you again
Hi, Shari,
Welcome to LCSC! I am sorry to hear about your diagnosis, but it sounds like you are in great hands. Please keep us posted whether or not you end up getting genetic testing. I hope that you make many meaningful connections with other members in this community like Donna, Tom, Susan, and Bridget. Please feel free to explore the blogs and discussion boards and join in on any conversation that resonates with you. Please let us know if there is any specific kind of support or if there are resources on specific topics that you are seeking.
Know that we are here for you and we look forward to getting to know you!
Lauren
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Lauren Humphries
Digital Community Manager
LUNGevity Foundation -
Hi, Bridget,
I am sorry to hear about your diagnosis, but like Tom, I am happy to hear that it was detected early. That is always a good sign. I'm also glad that you've joined LCSC and connected with Tom and Shari. This is a great forum to share stories with and ask questions and advice from other patients/survivors. Tom already mentioned his blog and there are a few others as well. Please feel free to join in conversations on start new ones in the discussion boards. And let us know if there is any specific type or support or resources that you are looking for.
LUNGevity's President Andrea Ferris is a member of the Stand Up to Cancer Lung Cancer Dream Team, which is dedicated to understanding and treating the KRAS mutation. You can learn more about their research program here https://www.standup2cancer.org/dream_teams/view/su2c_acs_lung_cancer_dream_team.
Please keep us posted and let us know how we can help!
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, Rita,
Welcome to LCSC. Thank you for sharing your story. I hope you will make many meaningful connections with other patients and survivors on this site. Please continue to keep us updated and feel free to join in any of the discussion threads or start new ones. Let us know if you have any questions or if you're looking for resources on a specific topic. In addition to LCSC, LUNGevity has peer-to-peer support mentorship programs as well as a wealth of educational materials available in print and online.
LUNGevity's President Andrea Ferris is a member of the Stand Up to Cancer Lung Cancer Dream Team, which was created in 2015 to address treatment options for patients with KRAS-mutant lung cancer. There is more information about their work on this website: http://www.lungcancerdreamteam.org/
We are here for you. Let us know how we can help!
With gratitude,
Lauren
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Digital Community Manager
LUNGevity Foundation -
On 11/17/2016 at 3:37 PM, Just Chel said:
Thank you Susan! I was so lucky. I would never have know that I had cancer until it was too late if the doctors at John's Hopkins had not done a CT for my esophagus. That is why I am so passionate about helping LunGevity.
I am happy to hear your great news! That is something to celebrate this holiday season!
There are many opportunities to get involved with LUNGevity. Here are a few https://www.lungevity.org/get-involved If you have any questions, please feel free to email me at lhumphries@lungevity.org
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, KC,
Welcome to LCSC! I am happy that you've joined this community. Please feel free to start new topics and join ongoing conversations in the discussion boards. This is a great place to ask questions and share stories with others whose lives have been affected by lung cancer. If there is anything you need in terms of support or resources, please let us know!
Lauren
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Digital Community Manager
LUNGevity Foundation -
3 hours ago, AudreyCastle said:
Hi I am Audrey and I am new to this forum too. I was suggested this forum by my friend who is suffering from lung cancer. I hope I will get some help here on how to keep up the faith in her.
Hi, Audrey,
Welcome to LCSC! I am sorry to hear about your friend's diagnosis but I'm glad that you've joined this community.This is a great place to connect with patients, survivors, caregivers, and advocates who have also been affected by lung cancer. Feel free to start new threads or join ongoing conversations in the discussion boards. There are also member blogs and photo galleries and a calendar with upcoming lung cancer events all over the country. We look forward to getting to know you!
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, Cindy,
Welcome to LCSC! I am happy to hear that they found your lung cancer early. We'll be thinking of you tomorrow! Please update us when you can after your surgery and I'll be happy to tell you more about this online support community.
We are here for you!
Lauren
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Digital Community Manager
LUNGevity Foundation -
The LUNGevity Support and Survivorship Program Supporting Lung Cancer Awareness Month
Written by: David Morales
November is both Lung Cancer awareness and National Family Caregivers Awareness month. In helping the fight, family and friends often take on the caregiver role to offer support. College News advocates the awareness for the cause this November. Katie Brown, the VP of the LUNGevity Support and Survivorship Program, joins College News with special guest Anita Logsdon, a nurse in oncology hematology care (OHC), to discuss the challenges of caregivers for people fighting lung cancer.
College News: How common is lung cancer?
Katie Brown: Lung cancer is very common. It affects one in 15 people. In the United States, it is the leading cause of death among men and women. There are more than 224,000 new cases diagnosed every year.CN: What is the role of a caregiver for a person diagnosed with lung cancer?
KB: Caregivers are unsung heroes that take on many different roles and responsibilities. They may offer emotional, practical or physical support for a loved one or they may help at doctor appointments, during treatments and with household responsibilities. It really varies for each individual.CN: What types of support and resources are available to help caregivers navigate in their role?
KB: Well, at LUNGevity we have a lot of lung cancer patients and caregivers. We have a comprehensive website that is scientifically and medically vetted. You can visit lungevity.org. There is also navigatelungcancer.org. That is a great new resource for caregivers. It was developed by Bristol Myers Squibb in partnership with lung cancer patient advocacy groups just like ours. It’s a comprehensive source of education and information for people living with lung cancer, their caregivers, loved ones and also Oncology nurses like Anita!CN: Hello Anita! What role can a caregiver play to help a patient navigate their medical care?
Anita Logsdon: The caregiver can do some research before the initial visit so they can have knowledge of the appropriate questions to ask the doctor, such as: what type of lung cancer, what is the stage of the cancer and what type of treatment options are available? Especially, what the side effects of chemotherapy, immunotherapy or surgery are, or if there are any available clinical trials. Clinicaltrials.gov is a website that has information on clinical trials across the country. Clinical trials are an option now for treatment! There are many new therapies that have come out in the past few years for lung cancer.CN: What are some helpful tips to give caregivers when they visit a doctor?
AL: Where I work, we have a multidisciplinary team. The patients and their family will meet first with the physician. After that initial consult, they will meet with an advanced practice provider, a nurse navigator and a financial navigator. This meeting helps to identify the needs the patient and their support team may have early on in their journey.CN: Katie, are the results of this new survey transparent throughout your organization?
Katie Brown: I believe so! It’s clear that caregivers want more information. They want education and support. We find that, adequately supported, their better able to care for their loved ones. It improves the quality of life for the lung cancer patient and the caregiver.- See more at: http://www.collegenews.com/article/the-lungevity-support-and-survivorship-program-supporting-lung-cancer-aware#sthash.yrKQfHb1.dpuf
This interview was originally published on collegenews.com on November 29, 2016. Link: http://www.collegenews.com/article/the-lungevity-support-and-survivorship-program-supporting-lung-cancer-aware
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What Not to Say to a Cancer Patient
By: Jane E. Brody
What do you think is the most commonly asked question of a person who has, or has had, cancer? If you guessed, “How are you?” you got it right.
But as caring as those words may seem, they are often not helpful and may even be harmful. At a celebratory family gathering a year after my own cancer treatment, a distant relative asked me just that. I answered, “I’m fine.” She then pressed, “How are you really?”
“Really” I was fine, I told her. But what if I hadn’t been? Would I have wanted to launch into a description of bad medical news at what was supposed to be a fun event? Would I have wanted even to be reminded of a bout with cancer? Although my relative undoubtedly meant well, the way her concern was expressed struck me as intrusive.
A diagnosis of cancer can tie the tongues of friends and family members or prompt them to utter inappropriate, albeit well-meaning, comments. Some who don’t know what to say simply avoid the cancer patient altogether, an act that can be more painful than if they said or did the wrong thing.
A new book, “Loving, Supporting, and Caring for the Cancer Patient,” by a man who has been treated for a potentially life-threatening cancer and who has counseled dozens of others dealing with this disease, got me thinking about the best ways to talk with someone facing cancer — its diagnosis, treatment and aftermath. The book’s author, Stan Goldberg, happens to be a communications specialist, a professor emeritus of communicative disorders at San Francisco State University.
Dr. Goldberg learned at age 57 that he had an aggressive form of prostate cancer. He said in an interview that cancer patients too often encounter people who assume the role of cheerleader, saying things like “Don’t worry about it,” “You’ll be fine,” “We’ll battle this together,” “They’ll find a cure.”
However, he observed, “Words of optimism may work in the short run, but in the long run they can induce guilt if the cancer is more virulent and defeats a person’s best effort.
“I was dealing with the possibility that my life would end shortly, or if it didn’t, it would be changed dramatically. False optimism devalued what was going on in my body. People were insensitive not from a lack of compassion but from not knowing what is really helpful.”
What he and those he’s counseled have found to be most helpful were not words but actions, not “Let me know what I can do to help,” which places the burden on the patient, but “I’ll be bringing dinner for your family this week. What day is best for you?”
As a self-described “independent cuss” reluctant to ask anyone for help, Dr. Goldberg said his son taught him this important lesson. “He came to my house during my recovery from surgery and said ‘Stop lifting those boxes, Dad. I’ll do it for you.’”
Another author of very helpful books on living with cancer is Dr. Wendy Schlessel Harpham, who has had a recurring cancer for more than two decades. She suggests that people offer specific ways they can help. For example, they may say they can shop for groceries, care for children, take the dog for a run, or accompany the patient to the doctor, and then be sure to follow through with the offer.
Many people now use online sites like caringbridge.org to keep people up to date on their health and needs or organizing platforms such as mealtrain.com or lotsahelpinghands.com to ask for specific help.
Dr. Harpham said she came to dread the query “How are you?” because “no matter how it was intended, being asked ‘How are you?’ rattled my heightened sense of vulnerability. I found myself consoling those who asked and then fighting the contagion of grief and fear. Even when the news was good, I didn’t have the energy to include all the people who wanted updates.”
Dr. Goldberg suggests that when visiting a cancer patient, people talk less and listen more. ”Often the greatest support comes from silently witnessing what a person with cancer is experiencing,” he wrote. “Sometimes only a calm presence and compassionate listening are necessary. Silence becomes the breathing space in which people living with cancer can begin difficult conversations.”
In an article in Prevention magazine, Melissa Fiorenza offered this helpful suggestion for what to say to someone you deeply care for: “Feel free to cry with me, to talk, or not to talk. I’ll take my lead from you.”
When talking, Dr. Goldberg suggested, “engage more in conversations and less in question-and-answer interactions.” But if questions are asked, they should be open-ended ones like “Do you want to tell me about your cancer and what you’re going through? Maybe I can find ways to be helpful.”
Among the many suggested “don’ts” are these:
• Don’t make light of a patient’s physical changes by saying things like “At least you finally lost those extra pounds.”
• Don’t talk about other patients with similar cancers, even if they fared well — no two cancers are alike. It’s fine, though, to ask if the patient would like to talk with someone else who’s been through it.
• Don’t say the patient is lucky to have one kind of cancer rather than another, which downplays what the person is going through. There’s nothing lucky about having cancer even if it’s a “good” cancer.
• Don’t say “I know how you feel” because you can’t possibly know. Better to ask, “Do you want to talk about how you feel, how having cancer is affecting you?”
• Don’t offer information about unproven treatments or referrals to doctors with questionable credentials.
• Don’t suggest that the person’s lifestyle is to blame for the disease, even if it may have been a contributing cause. Blame is not helpful. Many factors influence cancer risk; even for lifelong smokers, getting cancer is often just bad luck.
• Don’t preach to the patient about staying positive, which can induce feelings of guilt in the patient if things don’t go well. Better to say, “I’m here for you no matter what happens,” and mean it.
• Don’t ask about prognosis. If the patient volunteers that information, it’s O.K. to talk further about its implications. Otherwise, it’s better to stifle your curiosity.
• Don’t burden the patient with your own feelings of distress, although it’s fine to say, “I’m so sorry this happened to you.” If you feel overwhelmed by the prospect of interacting with a person with cancer, it’s better to say, “I don’t know what to say” than to say nothing at all or to avoid the person entirely, who may then feel abandoned and think you don’t care.
This story was published on nytimes.com on 11/28/16. Link: http://www.nytimes.com/2016/11/28/well/live/what-not-to-say-to-a-cancer-patient.html?smid=fb-share&_r=0
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Are you a cancer patient or caregiver struggling with anxiety or depression? Are you worried that your fear, uncertainty or changes to your appearance or mobility will leave you depressed?
Join the Cancer Support Community webinar, Frankly Speaking About Cancer: Coping with Anxiety and Depression on Wednesday, November 30 from 2:00pm-3:30pm ET. You will learn about ways to cope with the anxiety and depression that often accompany cancer. A psychologist and a social worker will both present information to help.
The webinar features the following panelists:
•Diane Robinson, PhD, UF Health Cancer Center – Orlando Health
•Stacey Balkanski, LCSW, Program Director at Gilda’s Club South Florida
•Shari Goldberg, Lung Cancer Survivor
The webinar will be run through WebEx with a slide presentation. After the panelists’ presentations, participants will have the opportunity to ask questions through a chat feature during the Q&A session.Click here for more information or to register!
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Hi, Wendy,
I am so sorry to hear of your partner's diagnosis. I'm glad you've joined LCSC. I will share your post on our Facebook group and ask people to respond with advice and encouragement! Stay strong. We are here for you.
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, Steph,
Welcome to LCSC! I'm sorry to hear about your diagnosis, but I am happy that you've joined this community. First of all, congratulations on your success with quitting smoking! Stay strong and know that we are here to support you. I hope that you'll continue to explore the message boards and feel free to join threads on topics that interest you. This is a great place to ask questions and share stories and advice. We look forward to getting to know you!
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, Doris,
Welcome to LCSC! This site features online message boards where members can ask questions or talk about various topics. There are also member blogs, photo galleries, and a calendar of upcoming lung cancer awareness/fundraising events. LCSC is a great place to connect with other patients/survivors and share stories and advice. Is there anything in particular that you'd like to know more about? Are you looking for resources/information on a particular topic?
We are here to help!
With gratitude,
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, Ray,
Welcome to LCSC. I'm sorry to hear about your current situation. We're glad you've joined LCSC--this is a great site to connect with others on a similar journey. Like Donna said, please keep us posted on your treatment and feel free to ask questions or join in the conversations on other discussion threads.
We are here for you!
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, Melody,
Welcome to LCSC. I'm sorry to hear of your husband's diagnosis. Here is a link to a list of Practical Resources in LUNGevity's Caregiver Resource Center: https://www.lungevity.org/support-survivorship/support-we-provide/caregiver-resource-center/practical-resources-for-caregivers
Please keep us posted on his scan results tomorrow. You'll be in our thoughts.
Lauren
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Digital Community Manager
LUNGevity Foundation -
I love it, Susan! Very clever idea!
Lauren
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Digital Community Manager
LUNGevity Foundation -
You're in our thoughts too, Monica! Stay positive!
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Hello, Hammer,
Welcome to LCSC. I am sorry to hear about your diagnosis, but I'm glad you've joined this online support community. We have members of all ages and stages of this disease, as well as caregivers and advocates, like me. I hope you'll make many meaningful connections with other members and you'll be able to share stories and advice. To start off, here's a link to the LUNGevity blog with a story about survivor Jim Morrison https://www.lungevity.org/support-survivorship/get-connected/blog/living-to-see-another-sunrise
While you're on this site, please feel free to read and comment on other discussion threads. This is a great place to ask questions and get to know people who are on a similar journey or who have been through similar experiences. There are many stories of hope.
With gratitude,
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, Susan,
Thank you for being an incredible advocate! The theme of Lung Cancer Awareness Month is #changelc and we're sharing stories all month long of people like you. We want to hear from survivors/patients, caregivers, and advocates how and why they want to change lung cancer. We want to end the stigma by changing the face of lung cancer. We want to spread the word that anyone can get lung cancer and no one deserves lung cancer. In addition to advocacy, we'll be launching the new Lung Cancer Navigator mobile app, partnerships, and research funding opportunities that will transform how people live with lung cancer.
And if you do get restrained, I promise to bail you out
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, Lily,
Welcome to LCSC. I'm sorry to hear of your father's diagnosis. I'm glad you've joined this community. It's a great place to connect with other caregivers and patients/survivors to hear their stories and advice firsthand. LUNGevity also has many resources to help with caregiver burnout and fatigue. There are also tip sheets and stories from other caregivers who've been on similar journeys. Here's the link https://www.lungevity.org/support-survivorship/caregiver-resource-center
Please keep us posted on how you and your father are doing.
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, AMay,
I'm glad that you posted and happy that you've already been able to connect with Lily and Tom. LCSC members are full of stories and advice from their own personal experience. It can be nice to connect with people who understand what you're going through. Please continue to explore the discussion forums and blogs and share updates as often as you feel comfortable. This is a great place to ask questions too, so I encourage you to fire away!
Let us know how we can help!
Lauren
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Digital Community Manager
LUNGevity Foundation -
Are you a lung cancer survivor? Please participate in this 5-10 minute anonymous survey, and tell us about your preferences for getting information about lung cancer. Your input is extremely important. It will help us better serve the lung cancer community.
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Are you a lung cancer caregiver? Please participate in this 5-10 minute anonymous survey and tell us about your preferences for getting information about lung cancer. Your input is extremely important. It will help us better serve the lung cancer community.
Scan results - POST HERE!
in MEMBER UPDATES
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Congratulations, Susan! I am so happy for you!
Lauren
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Digital Community Manager
LUNGevity Foundation