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Living with lung cancer - Introduce yourself & come say hi
Welcome to the Lung Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with lung cancer or caring for someone with lung cancer. Let's learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. Chances are you'll to be greeted by volunteer patient Mentors and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?
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The Chemo question for my husband - My sister had Stage 4 Lung Cancer at diagnosis. Her cancer was in both lungs, had spread to her brain and her liver. She lived through four brain operations in four weeks...and survived and then my husband and I took care of her for the first six months. She had both radiation and chemo over those months and was already pretty beat up from the brain tumor. It was a difficult experience. She was given just a few months to live but made it 18 months (she was tough). Having seen that both my husband and I are reluctant to have Chemo. I think the primary concern is that Chemo kills good cells along with the bad and in her case, it was just prolonging the inevitable and it was a very tough go for her. The doctors assure us that there are newer and better therapies and drugs with Chemo but we'll have to weigh the alternatives. I'm sure many of you here have had Chemo and perhaps it's not as bad as what we've seen (which was 8 years ago). We're hopeful that there may be an alternative or we're just plain wrong about the Chemo or that radiation and a combo of immunotherapy or targeted therapy may be a more palatable option. At this point we're still trying to get to a final diagnosis and stage....but the more information I can get the more I can help my husband make this decision. He's a 'quality' vs.. 'quantity guy for sure. Thank you for your feedback and kind words.
Bless your heart...stay positive and keep asking questions. Sounds like you are getting excellent care. A positive attitude is very important!
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1 Reaction@cindylb, I'm so sorry to hear about your husband's diagnosis. Lung cancer and breast cancer definitely are different journeys. And it's also so different being the caregiver rather than the patient. However, I'm confident that your breast cancer experience will contribute to your caregiving skills. I've also noticed how compassionate, helpful and informative you are with others in the breast cancer group on Connect.
I know you'll get great support and information here from other lung cancer survivors. @burrkay in particular can share his caregiving experience with you.
Cindy, has your husband shared why he is resistant to getting chemotherapy treatment?
I am having targeted brain radiation, then chemo, then a clinical trial that targets my EGFR Exon 20 Insertion mutation. They did the Guardant 360 blood test on me.
Hugs and silent blessings are coming to
you!
linda
I am having targeted brain radiation, then chemo, then a clinical trial that targets my EGFR Exon 20 Insertion mutation. They did the Guardant 360 blood test on me. So glad your wife is doing well!
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1 ReactionI’m so with you on
the positive!
linda
I will stay connected! I want to hear only positive things as that’s what I need right now!
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2 ReactionsHello all, I just joined this group. I am a breast cancer survivor of four years total (Stage 0 and Stage 1). Just as I got back on my feet my husband was diagnosed with COPD and we are now going through the tests to determine his exact lung cancer status. The support I have received as part of the breast cancer group on this site has been invaluable and now I'm hoping to find support and information as a caregiver for my husband. My husband has been part of an on-going lung cancer study (CT scans) for four years. He is an ex-smoker. His last scan in January showed a mass that they've been watching for a year that during the last six months doubled. His biopsy showed a cancer from the upper GI tract (not lung cancer specifically). However, with some research I discovered a lung cancer that shows as upper GI in the pathology called Pulmonary Enteric Adenocarcinoma. Our doctors are considering this but also requesting additional tests. His PET scan and brain MRI show no cancer elsewhere in his body but there is a lymph node in the lung that showed possible cancer in the center of his lung, near the tumor but also near the esophagus. Our next step is an Endoscopy next week. The biopsy of that lymph node will give us and the doctors more information. Once we have those results we'll meet with his oncologist to discuss the test results and treatment options. So far they are only saying Chemotherapy, which my husband is very hesitant to do. Support, thoughts, encouragement welcome. I look forward to reading your posts and gaining some understanding and insight into treatments and outcomes on this. We are finding this process much more complicated than my breast cancer journey. Best to everyone.
Hello Lindsay:
Welcome to Mayo Connect. I have met many amazing care givers and survivors in this wonderful and supportative community.
I was diagnosed with non small cell lung cancer 10 years ago when there was little printed information and little hope for lung cancer patients. Now, there are over 1100 therapies. With proper diagnosis and proper treatment there is hope!
My quality of life was greatly improved after my left lung VATS surgery at Mayo Clinic along with a Paced Breathing Research Study, lead by Dr Amit Sood.
The research at Mayo Clnic is remarkable and the support is the best in the world as well. So let’s stay Connected, ok?
A warm welcome,
linda
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