Lung Cancer

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Lung Cancer
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    Community Voices

    I have struggled financially at times but have managed to be ok and get by. My Father died in 2016 and my step mother removed my sister and I from our trust and rolled about $3M to her son. Not my dads. So I’m driving a 21 year old car and that sob has stolen our money. We were supposed to be able to start a new life. I can’t handle this at all. I have a CT to check for lung cancer Friday and I really hope I have it. I’m just so tired.

    13 people are talking about this
    Community Voices

    “Physician, Heal Thyself.” ~ Jesus Christ, New Testament Bible

    Part 1 of 2 Taking my health into my own hands after receiving letter of dismissal from medical services

    After receiving a letter of dismissal from medical services from the Kansas University Physician’s Network in November of 2021, I fought back by contacting every agency I could think of to advocate for me—KU Patient Relations, Humana Quality of Service Department, the Federal Comptroller’s office, and several attorneys—to no avail. This dismissal was at a critical juncture in the treatment of chronic lung conditions including: Sputum sample lab result of Fusarium, #Bronchiectasis, #Asthma, pending CT scan for #LungCancer screening, and pending sweat chloride test for possible mild or moderate #CysticFibrosis.

    I am still working with a Humana Social Worker to find a new healthcare provider. However, I am one who refuses to just sit on my butt and complain. As soon as I received the letter from the third law firm declining to take my case, I got busy researching these conditions—medical journals, scientific studies on the latest treatments. From the information about medications and practices used in treating these conditions that I gathered from these sources, I then searched for comparable naturopathic and homeopathic alternatives which I could employ myself at home.

    While I have no licenses or certifications to diagnose, treat, or make healthcare related recommendations to anyone, I would like to share what I’ve been doing to help myself heal.

    I am currently addressing the most serious issue which is Fusarium in my lungs. In my effort to obtain treatment, I went to two other hospitals. The second one did me the service of providing me with a CT Scan. The CT scan showed a 5mm nodule in one of my lungs. My discharge instructions were to follow-up in one year.

    This was upsetting to me; because, after the first sputum sample I provided showed Psuedomonas aeruginosa in my lungs, the primary care doctor I had at the time said it would be important to determine whether this was a true infection or a colonization of the Psuedomonas. This statement was confirmed to me by an email response from a microbiologist at the Centers for Disease Control answering my question about Psuedomonas.

    When the second sputum sample I provided was determined by the lab to be free of the Psuedomonas after a course of Levofloxacin; but, now contained Fusarium, I did more research to try to find out what that might mean because the Pulmonologist told me, “Everyone has Fusarium in their lungs, I’m NOT treating it.”

    It turns out that Fusarium is just as treatment resistant as Psuedomonas. The doctor was correct, in a manner of speaking; because, everyone is exposed to Psuedomonas and Fusarium in just day-to-day living. The two micro-organisms are present in the soil and water. We come across them everyday. Our immune systems address these pathogens as a matter of course and we are usually unaware we have even been exposed…unless, a person has pre-existing conditions which are exacerbated by the presence of these microbes or if a person is immunocompromised, then it can be life-threatening.

    Take someone like me with #Bronchiectasis, #Asthma, and possible #CysticFibrosis. The first two make it difficult to clear the airways of pathogens—the #Asthma because it creates a thick, sticky mucus making an ideal environment for pathogens to take up residence; the #Bronchiectasis because the airways are enlarged, scarred, and have less functionality in expelling mucus build up. #CysticFibrosis patients have similar issues. They quite often suffer with colonizations of Psuedomonas, Fusarium, or Aspergillus. Aspergillus and Fusarium are frequently mistaken one for the other because their structure is very similar. These colonizations have life cycles which can include true infections.

    The most common way, aside from noting symptoms of fever, to determine whether there is a true infection or a colonization is through a CT scan. Detection of a nodule in the lung is the evidence that there is likely an infection. The treatments for infection vs. a colonization are a bit different. Either way, treatment is necessary.

    Taking all of this into consideration and the fact that I have been denied treatment, this is what I’ve been doing for myself and why:

    2 people are talking about this
    Community Voices

    I’m new here!

    Hi, my name is Savana. I’m new to The Mighty and look forward to sharing my story and connecting to other caregivers! My mom is dealing with complications from chemoradiation for lung cancer, primarily esophageal stricture and radiation esophagitis that led to a perforation and now a PEG tube that could be permanent. I hope to connect to others and learn from your experience living with or supporting a tubie. :)

    #MightyTogether

    2 people are talking about this
    Community Voices

    I know that I’ll be struggling with how I feel physically this weekend. I got a bad cat bite last weekend and the antibiotics are takings their toll on me and I’m on them through Monday.
    When I don’t feel good I struggle because I always feeling good. When I’m not feeling well, I feel sad and feel I’m missing things. I also find that I cry for my husband and my Father who died 9 months apart from a quick spreading cancer nearly a decade ago. My husband was 49 years old - high school sweetheart (pancreatic cancer - 7 weeks) my dad, (my hero) 75, lung cancer, 4 weeks. Just as I was mourning my dad, my husband started not feeling great. They left swiftly and very ill. I’ve long mastered the flashbacks but when I’m sick, I want one or both of them. I’m nearly 59 and and those core human needs remain..as they should. I’m only human.
    Anyway, anticipating a struggle, I’ve made ice with my Ice maker to sip on some nice cold drinks, got my new Debbie McComber novel ready, got my laundry done and all my errands and switched shifts at work. I also have at least 20 ty notes to write and just maybe (SURPRISE) the antibiotics won’t hit me as hard as they usually do on day 5.
    My point is, I know myself, when I know that illness is coming, I prepare…and I get through it more like a luxurious retreat than a sad, dark, miserable weekend. I’ve trained myself these past years. When you lose half of your heart, you learn to embrace the struggle 😊

    8 people are talking about this
    Community Voices

    I'm new here!

    Hi, my name is grace86. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether in 2020 i lost mmy youngest son to lung cancer , in2021 i lost my husband to kidney failure. i am having a very hard time getting through the griving ..

    4 people are talking about this
    Community Voices
    mel12

    I'm new here!

    Hi, my name is mel12. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether

    #Migraine

    #Fibromyalgia

    #PTSD

    #Grief #Dysautonomia #IrritableBowelSyndromeIBS #Inflammation #RaynaudsDisease #Asthma #chronic lumbar back pain it all started when i fell at work and hurt my back i had to get surgery because nothing else helped and a few weeks later i was diagnosed with lung cancer and went through a lobectomy. i thought i was on the road to recovery when i developed a tumor in my throat and had to have that removed then i lost my mother unexpectedly and my father two months after not to say it all happened within one year. it had to be the worse year i had but instead of getting better i was getting worse and no-one could figure out what i had. it was just recently i was diagnosed with pots syndrome and all the other things on my list meanwhile i believe I've seen every specialist you could think of. My flair ups are debilitating and i am at a loss the quality of life stinks but I'm staying positive believing this to will pass. i am seeking a group to help get through this as you may all know it is very difficult and most people don't understand it.

    so that's my short version of my story.

    3 people are talking about this
    Community Voices

    My uncle is dying

    I am only 20 years old and have never had a close family member pass away. Does anyone with more experience have any advice for how I can support my mom as she comes to terms with the impending loss of her brother? I am worried about her and even more worried about my grandma.

    I don't know, it's just going to be so strange to see him this Christmas and know it's going to be the last time. The literal last time. This big tall man with an impressive white beard, bright blue eyes that stare right into your soul, a scintillating wit, and a deep rolling singing voice, he's going to be gone, completely and forever.

    #Cancer #stroke #LungCancer #braincancer #Grief #Death #Family

    3 people are talking about this
    Community Voices

    Not knowing… 😔 #Cancer

    So I went for a CT scan that I assumed was for having had broken ribs recently… turns out it was to check the growth pulmonary nodules that showed up in a previous scan 3 months ago when I was in hospital and nobody told me about…

    So I might have lung cancer, and I know, it’s only a MIGHT, but I’m not feeling very mighty right now… I tick every box of unhealthy and somehow, knowing my luck…

    My bucket full of regrets are resurfacing and emotionally I feel (to use the medical term) a bit shit…

    I spent all Friday calling different hospital wards trying to get feedback, but all I got were unanswered phones or answering machines… I don’t know what, where or when I’ll find out anything more…

    And now I’m in a funk…

    2 people are talking about this
    Sponsored by

    Getting Lung Cancer When You've Never Smoked: One Woman's Story

    Heidi’s life changed forever at the age of 55, when she was diagnosed with lung cancer, despite having never smoked. Learn more about Heidi’s diagnosis and treatment journey in the tappable below.

    Sponsored by

    Why One Woman is Speaking Up About Her Journey With Lung Cancer

    Heidi’s life changed forever at the age of 55. It started with a familiar twinge on her lower left side, reminiscent of the ovarian cysts she had experienced throughout her life. Given her age and medical history, she decided to make an appointment with a gynecologist. She was able to get an ultrasound at that very first appointment, and it revealed a six centimeter cyst on her left ovary. A follow-up test didn’t find anything too alarming, but the gynecologist still wanted to follow up with a computed tomography (CT) scan just in case. The result of the scan shocked her. While it ruled out the possibility of ovarian cancer, it did show an abnormal mass in her lung. A positron emission tomography (PET) scan later confirmed she had a mass in the upper left lobe of her lung and enlarged lymph nodes between her chest and both lungs. She was diagnosed with Stage IIIA non-small cell lung cancer. Heidi is not alone. Lung cancer is the leading form of cancer death in the U.S., but many people don’t consider receiving this diagnosis if they are a non-smoker. Non-small cell lung cancer, the type Heidi was diagnosed with that day, makes up 80 to 85% of all lung cancer cases. For Heidi, this news came seemingly out of nowhere. As a health education and fitness trainer, staying fit and eating clean were huge parts of her life. She had never smoked, and she wasn’t experiencing respiratory symptoms. That’s why it’s so important for everyone who is eligible to get evaluated for lung cancer. Plus, individuals with non-small cell lung cancer who are diagnosed earlier may have more treatment options available to them, which may lead to better outcomes. The prognosis after her initial diagnosis seemed grim. Her pulmonologist actually told her to get her affairs in order. As cancerous cells grow they can spread to other parts of the body, so she was told to immediately make a follow-up magnetic resonance imaging (MRI) to see if the cancer had spread to her brain. She was terrified. Heidi was able to get an appointment that day, but about 50 miles away in Boulder, Colorado. She and her husband jumped in the car and made their way there immediately. In the morning, they were given the good news — she did not have any metastases (meaning secondary growths) in her brain. The couple went from their lowest low to pure elation, and for the first time since hearing the news, Heidi actually felt some hope she would make it through. The majority of tumors found in people with Stage III lung cancer are determined to be unresectable, which means the cancer cannot be removed with surgery. Heidi’s oncologist informed her that she may be a good candidate for chemoradiation therapy followed by immunotherapy. Immunotherapy may be a treatment option for patients after chemoradiation therapy is complete and their disease does not progress. Knowing the initial course of treatment made her feel a little more in control. As chemoradiation therapy started, Heidi’s support system became especially important to her. The emotional toll of cancer was difficult on her family, but when she finally started telling people about her diagnosis, it was the misconceptions surrounding lung cancer that hurt her the most. She was never greeted with, “I’m so sorry;” the first comment was always, “I didn’t know you were a smoker.” A month later, there was good news. The day before Thanksgiving, her radiation oncologist approached her. “I generally don’t show people these, because there usually isn’t a lot to see, but there’s something I’d like to show you,” he said. He took her back to his computer and showed her that her tumor was responding well to chemoradiation therapy. After that, she started walking with her head a little higher, and loved showing photos of the scans showing progress to her clients. She finished chemoradiation therapy around Christmas time, and it was time to start thinking about the upcoming immunotherapy. She asked her oncologist if she could travel during her treatment, and was given the OK. With her family, she made a plan. Her wish list was simple. She wanted to spend time with her three kids, her husband and the people she cared about the most. And that meant traveling. She worked with her doctor and care team to prepare for travel. Although she had to take precautions, as soon as she arrived at her destination, she was able to relax and focus on spending time with her family and kids. Like many people, before her diagnosis, Heidi believed lung cancer was a “smoker’s disease,” and never thought to get evaluated for lung cancer. According to the CDC, about 10-20% of lung cancers happen in people who have smoked fewer than 100 cigarettes in their lifetime — including people who have never smoked at all. Due to people’s misconceptions around the disease it took Heidi 10 months to go public about her diagnosis on social media. However, the more she’s learned about the statistics, the more she has felt the need to speak up. Heidi also shared that if someone approached her afraid they might be experiencing an early sign of lung cancer, she would tell them to make an appointment with their doctor, and to keep in mind they might need to advocate for themselves in order to get evaluated. She would also let them know there is hope. She knows because she is living proof of that! US-59173 Last Updated 11/21