Lung Cancer Questions
Questions from a Nursing Student in Florida
Asked by Kgreg22889 on Tuesday, March 26, 2013
Questions from a Nursing Student in Florida
Hello Everyone. I am currently working on a community health project and was hoping to get some feedback from a couple of people on Lung cancer. I understand that not everyone has the time to answer, but I would really appreciate any contribution. Thank you so much!
First please tell me a little about your disease. (Such as when were you diagnosed, what time of treatments have you tried, etc.) What motivated you to seek care?
What factors do you believe contributed to your cancer?
Have you ever been a smoker? If so, have you ever tried to quit before your diagnosis? What motivated you to want to quit?
Were you able to quit? If so, what facilitated that? If not, what hindered you?
Tell me about your treatments. How have they affected your life? Your family?
What kind of changes would you like to see being made to lung cancer screening and treatment?
8 Answers from the Community
I can answer questions about my dad's first cancer, non-small-cell lung cancer, squamous cell. Stage 2b. T2 N1 M0, a tumor larger than 2 cm, less than or equal to 5 cm, "metastasis to movable ipsilateral auxiliary lymph nodes," and no distant metastases. (The benefit of keeping notes. Good luck remembering that one.)
Dad noticed some changes in his breathing and had a little unusual cough. So he went to have it checked out around December 2009. His regular doctor sent him to a pulmonologist to look at a spot on his lung on the x-ray. Then there was a CT scan, lung scan at an outpatient center. Then back to the pulmonologist for a breathing test. Very emotional time. He was a smoker since his teen years, and quit a few years earlier because he could no longer breathe and smoke at the same time with COPD. Smoking was probably the number 1 thing that contributed to his cancer. He quit many times over the years, unsuccessfully like many people. Back when he grew up, of course it was normal to smoke and really nobody even thought about the lung disease. At the same time, he could have been sick with anything between then and now, and he did enjoy his cigarettes that became a comfort, addiction and habit. Had a stressful job.
By January 2010, they ordered a bronchoscopy with lung biopsy, that was done as an outpatient at the hospital. Then there was a PET scan. They discovered it was cancer. He started with a fever, feeling ill, and a cough. Three days after the biopsy, we were in the emergency room. He was sent home with Levaquin antibiotics for infection. Two days later, there was an adrenal gland biopsy because something showed up on the scans. Then we went back to the pulmonologist's office, and started to cough up fowl-smelling yellow mucus. We had to drive to another building for a sputum test, where basically, he had to cough up a good sample into a little cup for them to test. They also did another chest x-ray. Back to the pulmonologist, and he changed the antibiotic. Two days later. Boom-- checked into the hospital with pneumonia.
After that was treated successfully in about a week, they started talking about the surgery. We met with a very good thoracic surgeon. Here, they try to get lung cancer patients in for surgery as quickly as they can. So by February, even after the delay, we went to another doctor-- cardiologist for an exam to get the heart-health clearance to go ahead with the surgery. Then there was a pre-op at the hospital, a mediastinoscopy with biopsy and bronchoscopy five days later. One week later, he was in surgery-- by the end of February-- having his lower right lobe and some lymph nodes removed. The hospital stay was thirteen days, because of a complication with his heart. Now there are two ways I know that they can do the surgery. One way is the fancy new way with minimal cutting, and the other is older style where they cut the back and go in that way. Dad had the cut on his back, and still has a pretty long scar there.
I was there the whole day of the surgery, but I do not know how long the actual surgery took. Hours. There was a waiting room with a monitor where you could view the patient number, and whether they were in or out of surgery. After the surgery, the surgeon briefly came out and told us how it went, and we were allowed in to see dad in the recovery area, where he was in lala land. He was moved to the room, where he had i.v. fluids and a morphine drip that he could control with the button as he needed it. Fluid built up around the lungs, so they put in drain tubes, and there was a box on the floor with a metered window in it so the nurses could periodically record how much drainage there was. He was feeling good with the morphine. In pain, but tolerable with that button. He did develop an atrial fibrillation, and ended up in intensive care for a few days. After that was sorted out, the cardiologist came in, and he started on the medication amiodarone and aspirin-- stood there and explained why the aspirin is necessary, and so on. Before we left the hospital, the oncologist came in to talk about the next step, which would be adjuvant chemotherapy with carboplatin and taxol, just to make sure they got it all.
About two weeks after release from the hospital was the follow up appointment at the surgeon's office. The week after that was follow ups with the pulmonologist and oncologist's offices. The week after that, the cardiologist's office, and start chemo-- one visit for an orientation where they walked us through the process and took us into the finance office to make sure there was a way to pay for all this. It was a very busy time. The next day back to the cancer center for chemotherapy. Side effects were what you would expect to see-- low white blood cells, for which they gave him shots of Neulasta, billed at a shocking $8,000+ each -- times 4 = $32,000. Thankful for insurance. Every week for a few months there, we went someplace. He did very well with the recovery and was back to normal in a few months as far as the surgery goes.
The treatment for that cancer was successful, and he went back for follow-up scans every several months. I think it was every four months at the start. Big relief, and thought he was done for cancer for at least the prognosis you might expect for 5 years. He was cancer-free until 2012. On one of his follow-up scans, they detected a tumor in his liver. Initially, they thought this was the lung cancer returning. After the radiology and pathology reports were in, including something called a "tissue of origin" test, it turned out to not be the lung cancer, but instead appeared to be stage 4 pancreatic adenocarcinoma. In a little exam room, we were told that he probably had about six months, maybe a little longer with treatment. That was a long ride home, and started the crazy journey of the past almost ten months.
Regarding any changes with screening or treatment of the lung cancer, I don't think they could have done much better with the response, and they did start quickly after catching it on the chest x-ray. I recall a small spot on the lung several years ago, that they didn't check out further because he had several excellent years without all the extra medications. But I don't think there are any regrets about that. What I do wish is that there was better patient education to explain what's happening in a simple way to dad as we went along. With all of the media available, the scan imagery, and models in the doctors offices, they should spend a few minutes to really paint a picture of what's happening and have a patient communications plan. Maybe some people don't want to know. But I found the information I researched to be helpful. I also wish doctors weren't so fast to run out the door to the next patient. They're in and out like a tornado sometimes, before you have a chance to ask all the questions. Some were good about taking time. Finally, there was an awful lot of driving around town to all the different buildings and doctor offices. That's crazy when you're sick. I don't know what they could do about that... It's just an observation. Each individual doctor probably doesn't think about it when they ask you to come in frequently. Heart doctor, cancer doctor, surgeon, lung doctor, general practitioner, outpatient building number 1, outpatient at the hospital, blood lab. It gets crazy. One thing that was convenient is that the cancer center had their own PET/CT scan, and did the blood right there.
The nurses were excellent. They are really the glue that holds the whole thing together.
I was diagnosed on December 19th, 2012 with Stage IV lung cancer. The fact that I still feel like I have so much to do yet motivated me to seek treatment and will continue to to do so as needed. I opted for 6 chemo treatments, 1 every 3 weeks my last being this coming Thursday, 3/28/13. I also just had another full contrast CT Scan so am really hoping to hear cancer has remained at bay and has not spread. I believe smoking and not dealing with stress levels re: work and home issues contributed to this cancer. I have not touched a cigarette since 12/5/12 but hads tried to quit in July of 2012 and was cheating. Oddly enough, I have not really had much desire to smoke even though my husband continues to do so. I make him smoke on garage with door closed or as far away from the house as possible. Every once in a while I will get a little craving but remind myself what is going on and it goes away quickly. It would be nice if smokers were required to get annual lung xrays as part o f their checkups - I know this won't cathc it all but would certainly catch it early enough for enough people to be a worthwhile thing to make medically necessary like a pap smear and/or mamogram etc.
This has been so hard on my family I spend a lot of my "woe is me" moments feeling guilty for what I have done to their lives as well as my own. It hurts to know how much pain I am causing them and I am not sure how to stop feeling this way. They do nothing but support me and treat me like a queen so it is nothing they are doing I just have to find a way to stop feeling this way which is a big part of why I joined this website on March 25th. just being able to write these thoughts out and get support and feedback from people going through the same thing has been such a relief emmotionally. Hopefully you find some of this helpful, if I can help anymore or you need any other opinion/question answered I would be happy to help
Well, I was a smoker. I quit February 7, 2012. At that point I had smoked for 42 years. I also quit multiple times, 2 years, 5 years, 6 mo etc., you get the picture. I was really committed to quiting forever this time. I don't know why, I just was done and I knew it. Within a month my voice had changed a bit. University of Michigan had a free cancer throat screening in April of the same year. I have no insurance and thought what the heck! May 18th 2012 turned my life upside down. Little did I know what the diagnosis that I was about to get hit me...... Stage 4 lung cancer! I have promised to just change one persons mind about the real dangers of smoking, I think I have changed several! Even complete strangers that I talk openly to. See, I thought I was safe....... How foolish! My dad was a 2 pack a day smoker and died when he was 83 we think of a heart attack. My grandma was a 4 pack a day smoker and died from a stomach aneurism at 98 years old. Me getting lung cancer I thought the chances were small. What a fool! Please post and pass on. Smoking is not good, at all, no matter who you are or what your family history is. Save a life, or several! I'm counting my blessings for every breath I take now at 57. My husband, children, and grandchildren are going to miss me horribly as I them! I can't change that now!
A ps on this.... the University of Michigan has been wonderful through all of this even though they can only treat me, they cannot cure me. I am truly sad but not by any means giving up! I am still alive and have so very much to live for. The cancer is in my lungs, brouchular tube, thyroid, kidneys and in many lymph nodes. Please think of this before you light up again!
This is a difficult story but it is my story .....and unfortunately my truth.....I have Adenocarcinoma stage 1B, never smoked, and I am told I got this from one of my parents, my father, who was a life long chain smoker. He died 3 years ago - I took care of him - he had stage 4 - no treatment possible with 3 months to live.
It was very difficult to take care of him, after he died my mother came down with breast cancer within the same year, she made it and unfortunately then I was diagnosed with lung cancer 9 months later, with no symptoms - I simply said to the primary doc please take an xray - I had wanted to check up on a mass from 2004 that my HMO doctors refused to operate on...even though the mass at that time was 2.3 cm and had spiculated margins- they kept saying it's probably scar tissue and they said this (with no biopsy) and refused to do one. An insurance attorney friend of mine said they did this because I had "HMO insurance" and the operation is a very expensive one. One of my doctors - this time around - said I should go back and spit in their faces, I've thought about it.
The irony is that in 2004, I could have had the VATS operation and only been in the hospital 2-3 days and back at work in 2 weeks but my doctors at that time had no ethical or moral backbone and they just gambled with my life. We live in the world of "corporate medicine."
So this time I had PPO insurance and the operation, a lobectomy - upper left lobe removed - terrible time in ICU for 10 days, went into respiratory failure, was given too much anesthesia and they x-rayed my lungs too soon and I had major damage to the vocal chords with no voice for 9 months. I am a warrior in my heart and I made it through and my voice is coming back now. I have a fighting spirit but unfortunately that won't be enough. I am told that Adenocarcinoma will return, even though I am healthy now. This cancer changed the quality of my life - I have no quality of life now. I have nothing left.
I am wiped out now... with the medical bills and with trying to support myself this past year without a job. I have 3 graduate degrees (2 in education, trained as a teacher) but there are no teaching jobs or any other positions in other fields for me - I am 57yr old with so much to give but without work, there isn't much hope. My family can't keep paying Blue Cross the 1000 per month premium and 5000 deductible and 7500 out of pocket - I have to pay close to 17,000 per year before I can get covered at the 100% level. This has broken me financially and my family. Everything is gone now, everything.
In a one month, I will no longer have any money left - and Medical doesn't cover the cancer treatment you really need to make it - especially in lung cancer (which has the highest mortality rates and the least amount of funding) ....I have called many in the insurance industry and even after Obamacare had passed and I always get the same answer - your insurance cost will remain the same - you're 57 yrs of age and now with a pre-existing condition... - sure I can get health care I just won't be able to afford the health care I need. I postponed my cat scan, which I am suppose to have every 4-6 months because I simply can't afford it. My oncologist said the first 2-3 years are the most crucial - I am beginning the beginning of the 2nd year.
A doctor was kind enough to be honest with me - he said that the only people who will get the good coverage are those who are wealthy and if you have cancer you need to have the latest in cancer research and development - you will need to have the best coverage, which will cost the most money. That part doesn't change under Obamacare. I don't begrudged Obamacare I am glad that as a civilized society we have it but .....there are days I simply can't believe all that has happened to me. I thought the cancer would be the most devastating part - but it wasn't... I have a fighting attitude and the heart of a warrior - the most devastating part is I have just run out of solutions as to how I am going to make it through this life now. There is no safety net. What l learned is that I am just a number in the world of corporate medicine and that's a shame because I am so much more than that.
With all due respect,,who are you? Please provide all your contact information. If your doing a reserch project then this information should be public and the hospital you are connected to.
Please be careful what you tell on ANY blog. Your privacy and safety are very important.
We share the story and experiences so that other people might know what sort of things to expect. I found reading other people's experiences to be helpful, and I think you'll find that many of the procedures, tests and so on are pretty standard. Each person is unique, but experiences are often similar.
Thank you so much to everyone who responded! I really appreciate it. As for who I am. My name is Kate and I am currently a third semester student at UF. This information is all private and not used for a research study. We are just gathering some information in order to start a community program in our area to help people who have lung cancer get access to more resources and information. By hearing your stories and responses we hope to spark some ideas and bring this project to life. Thank you again everyone!!