• I know nothing but am scared! Last Monday, I was taken to the ER for a rapid heartbeat. After they got that under control they decide to

    Asked by greensmythe on Sunday, November 11, 2012

    I know nothing but am scared! Last Monday, I was taken to the ER for a rapid heartbeat. After they got that under control they decide to

    do a chest X-ray because I had been asked about any coughing. After seeing the X--ray it was considered abnormal so I was given a CT Scan and admitted to the hospital after laying with no food for 8 hours. I was not told I was going to be admitted until the last minute. Then I was told I would be having a lung biopsy the next day. They kept me on a saline drip IV all night and continue to wake me up all night. The next day ( Election Day) I was told they did not know when they would do the lung biopsy because their CT Scan had broken down- so I asked to see the doctor who had admitted me so I could do the lung biopsy on an outpatient basis. They left me on the drip until 2 in the afternoon when the doc finally came in and released me. I had the lung biopsy the next day.( Wednesday)- I called my family doc on Friday and they said they had gotten results and they read 'non small cell lung neoplasm' and that was it. I don't really know my question.

    40 Answers from the Community

    40 answers
    • Harry's Avatar
      Harry

      That probably should have been "non small cell lung cancer." Maybe they are still unsure whether it is actually cancer, but they did a biopsy they should know the result. "Neoplasm" is one of those jargon words that means something when doctors use it to each other, but never should be dropped on a patient without an explanation. You will want to see a specialist--an oncologist. Your family doctor may be able to recommend a good one. You may also want a second opinion. That might best be out of town. Here is a list of the 100 best cancer hospitals in the US: http://health.usnews.com/best-hospitals/rankings/cancer You might note that the Cleveland Clinic is #6 and that the University of Michigan and University of Chicago both rank in the top 20. The University of Michigan advertises a service (I'll try to find the number) where you can call and speak directly to an oncology nurse whether or not you are a U of M patient.

      There may have been many explanations as to why you were treated the way you were. But, that still desn't make it right. Someone should have told you more and not kept you hanging around imagining what can go wrong. Knowledge is the first step in overcoming fear.

      And, it is perfectly normal for you to be fearful--particularly at this stage. You've taken the first steps in overcoming that fear. Make a list of things you are going to do on Monday--such as getting an appointment with an oncologist--and then try to forget it for today. That may seem difficult, but there's little you can do until then.

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      Thanks so much for answering my scary explanations of what has happened in the past week. I have an appointment set up with an oncologist for Monday at 8am ( the doc who admitted me did that before I was released) - so I will know more tomorrow. But, I appreciate all the information you gave me and will post more as I find out more. Thanks again for your compassionate answer.

      over 4 years ago
    • Harry's Avatar
      Harry

      That U of M cancer hotline is[phone number redacted].

      Glad to have been of help.

      You could google that diagnosis and find out more, but a word of warning. The information on the Internet tends to be out-of-date and scarier than the actual facts. Some of it is good and can help you understand what is happening, but survival statistics, in particular, should be viewed with scepticism. They're usually based on studies from a few years ago and those were based on patients who were diagnosed even more years ago. You will probably receive newer treatments. Besides, without a lot more information than I think you've been given so far, you can't really apply those statistics.

      Bring a notepad (and maybe a friend/family member) with you when you see the oncologist. Write down what he tells you. Ask questions if you don't understand and get him to explain any unfamiliar words. You might also write down questions now that you want to ask when you see him. That way, you won't remember something a half hour after you leave. :-)

      over 4 years ago
    • Harry's Avatar
      Harry

      I see they don't like phone numbers. I googled University of Michigan cancer hotline and found it.

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      I will do the same and get it. Thank you and will post more tomorrow. Trying to get calm.

      over 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      Harry, sorry about the phone number thing. The site's software automatically takes out phone numbers and email addresses for protection. Some people will list their own phone numbers and other personal information not thinking about all the people out there that will use that for criminal use. We appreciate you helping Greensmythe, and I hope you get better news to Greensmythe.
      Stop back and check in with us to let us know how things are going.

      Greg P
      Team WhatNext

      over 4 years ago
    • Harry's Avatar
      Harry

      Hi Greg, No problem. I figured that was the case. And I recall times when people did do just that.

      over 4 years ago
    • princess123's Avatar
      princess123

      I know it's not a cancer hospital and still a drive for you, but my friend went to IU hospital in Indianapolis. He started out in another hospital and the nurse there ( he had a surgery scheduled) told him the success rate at IU was much greater. He took his 6 months to live self up to IU and the doctor there started with agresive treatment. 2 & 1/2 years later he did die. It was not lung cancer. My mom had lung cancer and radiation killed it off. Good luck.

      over 4 years ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      I know the feeling of scared..... When I figured out they were looking for ovarian cancer, and had obviously found something as per the tests... etc. I remember I was terrified. I realized my life was seriously threatened... I asked God to please take my hand, I told Him I would follow where he led me. He took my hand instantly and together we have walked from January 2006, to today 11-12-12 ... AND today I am cancer free. He took my fear and led me to here. God bless you and relieve your fears and give you peace and healing.

      over 4 years ago
    • LisaLathrop's Avatar
      LisaLathrop

      Sometimes you have a bad first experience on your journey. I did too at a "small" town who's 1 of about 5 oncologists did not know much about Leukemia....only how to diagnose it after an extremely rough and lengthy bone marrow biopsy. No bedside manner either....she just dropped the bomb and walked out the door. Uggh! That's when I knew I had to go somewhere else to be treated. I went to a large University research center for intial treatment (chemo) and then back "home" for a few more induction treatments....I developed an infection in my pick line and the docs there wanted to do SURGERY!! OMG....I said get me back to the University immediately!!! I never returned and am now in remission (4 years). My advice to you, is to get to a top-notch place so you can be treated by a team who is excellent at what they do. Ask, ask, ask questions until you are satisfied! A cancer diagnosis can't wait for people who XXX around with equipment that doesn't work, etc. Nurses are often very helpful....if you get to a good facility, otherwise, I'm not quite sure what keeps them in a healing profession.

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      This morning I was told I have Stage 4 lung cancer and that they are going to try something called Auch- and then after the holidays go to chemo. The doctor said it was an inoperable condition and that it is terminal. I am in such shock after this past week, I feel blindsided.
      I want to stay positive, but the doctor said I might have a year at most.

      over 4 years ago
    • Harry's Avatar
      Harry

      Definitely get a second opinion. I would go to one of those top rated treatment centers. As for the prognosis, maybe. Certainly he has had the best opportunity to evaluate your situation, but others here have reported similar prognoses--or worse--and it didn't happen.

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      This doctor has already set up a Pet Scan for Wednesday and then I have my next appointment with him the following Monday. I am thinking about the Cleveland Clinic but have no idea how to set up a second opinion or an appointment with them. I am thinking it might work to call my family doctor tomorrow and see if they can tell me how to do it???

      over 4 years ago
    • Harry's Avatar
      Harry

      I couldn't find the treatment you mentioned. Chemo makes sense for Stage IV. One reason to get a second opinion at a major treatment center is that there may be new drugs or clinical trials that might offer hope. Yes, I'm big on hope. :-)

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      This doctor is also going to try Alk on me, which is a new drug for this.

      over 4 years ago
    • Shoeless' Avatar
      Shoeless

      Once you get a diagnosis, or maybe even before if it takes a while, get a second opinion. The pressures, cost saving measures and endless maze of insurance bureaucracies alll guarentee that mistakes will occur. It's up to you to make sure they don't happen to you. Question your diagnosis. Two equally competent doctors can look at the same test results and reach different conclusions. This is very important - your second opinion should come from the team at a major teaching hospital. Good teamwork will reduce the risk of complications. You will want to make sure that all of your doctors are the best available. The place to find this is usually at a major medical center associated with a teaching university. Those hospitals offer the latest and most effective tests and treatments. I drove three hours each way to IUPUI for my treatment, and it was worth every minute and every mile. I would definitely reccomend that you go there - your driving time from Ft. Wayne should be between 2 hrs. and 2 1/2 hrs. I cannot stress too strongly how important I believe it is that you take that drive. The Simon cancer pavillion is the best there is.

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      Shoeless- Do you know how I can set that up? I have talked to the American Cancer Society and they said for a second opinion I would need to call my health insurance provider?

      over 4 years ago
    • Shoeless' Avatar
      Shoeless

      I wrote the above answer before reading all the answers and your responses. I still say don't take one doctor's opinion - get a second and maybe even a third. Cleveland Clinic is no doubt one of the best, and I still say IUPUI is #1 in my book. I'm not impressed with Chicago's results as regards people I knew who went there - that's a personal opinion, and you can take it however you choose, but I do not personally know anyone who went there and survived, whereas my daughter, my aunt and my sister all took my advise and went to IUPUI and all are in remission and doing great. Wherever you choose to go, I wish you the best of luck.

      over 4 years ago
    • Shoeless' Avatar
      Shoeless

      Yes, call your insurance company to find out what you need to do, and talk to the people at the hospital about it as they deal with insurance every day. They will know the ins and outs of setting it up far better than I do. The number at the IU Simon Cancer Center is[phone number redacted]

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      I have already found the phone number- they redact the numbers on the pages- I found that out yesterday when Harry was helping me . Everyone here has been wonderful! I will be on the phone tomorrow. Thank you!

      over 4 years ago
    • Shoeless' Avatar
      Shoeless

      WOW - the phone number isn't allowed to be shown? What is that about? Anyway you can call three one seven, two seven eight zero zero five four

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      I got it- apparently, the software on the site redacts the numbers - very CIA! I am calling tomorrow !

      over 4 years ago
    • Lindy's Avatar
      Lindy

      Oh, you certainly said it when you said "I don't really know my question." I feel that way all the time, get womped by something the doctor says, forget my original questions, leave confused and never sure I should have that doctor at all!! Poor communicating abounds. Hugs from blond land. Lindy

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      It is just so overwhelming, but I have been finding so much good information and advice from everyone. When I was told this morning, I was so shocked and my son who was with me ( 35 yrs old) started to cry- it was awful- I didn't know really what questions to ask the doctor. Even though I had an idea of what I might hear, actually hearing it was another thing. I just went along with whatever the doctor said, almost like I was in a trance- but now that I have had more time and lots of good advice I am slowly beginning to figure out what to do next. I am really grateful for all of the help.

      over 4 years ago
    • Harry's Avatar
      Harry

      The reason why phone numbers are redacted is because some people have posted their home phone number on this site. This is a public forum and that is a very bad idea. So, the software automatically redacts them. I forgot earlier.

      About the Cleveland Clinic. As it happens I've been there. My father died there and my mother, still very active at age 88, had a hip replaced there and was treated for pancreatic cancer there last spring. The place is huge. It consists of many buildings spread over several city blocks--all connected by tunnels, bridges, and passages. It is an absolute rabbit warren. However, they know they have a problem there and are reasonably good at helping patients, and visitors, find where they are going. There was even a gentleman who called my mother the day before her appointment with the oncologist, met her when she entered, and showed her to where she needed to go.

      Needless to say, there are a lot of doctors, even a lot of oncologists. It's best if you can get a reference to one who is experienced and specializes in your cancer. Maybe your family doctor can help there. You can even call there and get connected to someone who specializes. A lot of hospitals in the Cleveland Area are part of the Cleveland Clinic system so you want to be sure to get a doctor at the Main Campus.

      Yes, make sure your insurance will cover a second opinion. Second opinions are normal and neither your family doctor nor the oncologist should be surprized or offended.

      over 4 years ago
    • Barbeo's Avatar
      Barbeo

      As has been stated before you need to go somewhere else. I do not think this hospital knows much about cancer. I was also taken to the hospital for another reason (numbness on right side) unable to move my hands or legs, difficutly walking, ruled out stroke. Had the same test you did, MRI, CT, chest x-Ray, then another CT with contrast, but was treated so nicely. I was told by the ER Dr. that I had a large mass in Right lung that had involued my trachea 3-4 stage lung cancer I was not admittd to the hospital, after some meds were given numbness went away. My team of Drs an nurses are great so kind and compssionate, I was in to see my onocologist in 4 days and started treament 3 days after visit. Am now in my 5th round of chemo and finished my 5 weeks of radatation. Doing great. I have also heard that Cleveland Hospital is great some people from Ky have gone there and really done well. Many well wishes to you, but please do get another oponion. There was no reason for you to be treated the way you were, unless they were as scared as you were. My prayers are with you. Hang in there.

      over 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      Harry, you mentioned the Cleveland Clinic. My first Oncologist at Vanderbilt University Medical Center in Nashville was recruited by Cleveland Clinic. I hated to lose him, he was one of the first people to calm me down, when I was diagnosed for the third time. He was #2 man in the head and neck oncology dept.

      They absolutely have some of the best Doctors available.

      Greensmythe I hope you get the answers you need.

      Greg P
      Team WhatNext

      over 4 years ago
    • Harry's Avatar
      Harry

      Yes, Gary, they are one of the very best. That's why people come from all over the world to be treated there--and why that Main Campus is so big. There are other places, of course, but it's hard to go wrong there.

      My mother, age 88, had a Whipple procedure there last Spring. She had one of the most experienced surgeons in that procedure. My oncologist, whom I respect a lot, thought it would be too much for her. She's lost a bit of stamina, but last Summer she took a cruise down the Danube and her biggest complaint was the Marathon flight back from Istanbul. That's a credit to the skill of her surgeon--and to her toughness.

      That's the thing about a place like the Cleveland Clinic--and the other top 10 or 20 hospitals on that list. They recruit the best, have access to the best equipment, and can offer the latest treatments. That's important when the prognosis isn't good. For many of us, a smaller regional hospital is an excellent choice.

      The hospital Greensmythe went to last week didn't exactly cover itself in glory. As I mentioned before, there may be many explanations for what happened. But, explanations don't cut it. They didn't explain in a timely manner and their equipment didn't work. They may be better than that. I certainly hope so.

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      Now that I have gotten so much information here, today I am going to begin to search out a second opinion. After a off and on night of sleep, I at least know I need to do that and give myself some room to think and get the best help for me. As I thought over the last week and all of the encounters with the hospital and even the way I was given the diagnosis yesterday I realize they are not up to this situation and I need to keep positive and hopeful! All of your answers on this board have helped me so much. I am a writer ( a paid one) and that is why it seems like I am just more comfortable writing out all of this stuff even if no one ever reads it- it helps me to feel like I am moving forward.

      over 4 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Greensmythe, I assure you we read, even if we don't chime in. Keep writing! It helps your sanity and ours as well. Best of luck to you. I hope you find a provider you click with and a facility in which you are comfortable.

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      Just got off the phone from talking to my sister who is a nurse and lives in Indy- she agreed that I should go to IU Simon Cancer Center. I called down there and left a message with scheduling nurse of the area I will need to go to. Since I am supposed to have a Pet Scan tomorrow- we figured out that I can talk to the first doctor who gave me the diagnosis tomorrow because I will need to get the Pet Scan anyway, and also ask the first doctor if he could hurry the appointment with Simon- if not I have the call in so I will make it for my second opinion.
      Now I am going to take my black lab for a walk.

      over 4 years ago
    • Harry's Avatar
      Harry

      Frankly, I think all dogs are therapy dogs. Besides, they know what's really important. :-)

      IU is ranked #32 in that US News and World Report article. They are the #1 rated hospital in Indiana. So, it's an excellent choice--and closer than Cleveland Clinic.

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      Just got back from walking Betty - I feel better now that I have found a place that I feel will help me. I will keep writing. My dog and my words have always been my therapy ;-)

      April

      over 4 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      When we get our cure for cancer, it is going to somehow involve our companion animals. So many of us depend on our puppies or kitties for support! I'm glad you are feeling better about your situation. I hope you find the answers you need soon.

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      I don't know for sure how to put pictures up here, but I would love to be able to put a pic of Betty on here. She is a wonderful dog!

      I have my appointment next Wednesday, the 21st at the IU Simon Cancer Center for my second opinion. I feel much better now that that has been accomplished. It was so helpful to have all of this help, advice and support throughout all this craziness. It has helped me not dive into despair, although I have felt the pull a lot.

      I feel much calmer now that some things are settled. Tomorrow I go for the Pet Scan and then am going to try and relax over the weekend.

      over 4 years ago
    • Harry's Avatar
      Harry

      If you look at your Wall there is a section near the top for posting What's On Your Mind. At the bottom left of that section is where you add a photo. You should have an option to change your avatar (the small picture seen to the left of all your posts) by clicking on the blank avatar (it's small and light blue).

      All pets go to heaven. It wouldn't be heaven without them. When I get to the Rainbow Bridge I'll be met be several dogs.

      over 4 years ago
    • LuvinSis' Avatar
      LuvinSis

      Some cancers they find are technically "terminal" but when treated can be lived with and managed for a very long life span. My sister on here, AZcat60, has been through 3 of her 4 chemotherapy treatments and has tolerated them well.

      over 4 years ago
    • greensmythe's Avatar
      greensmythe

      I hope so! I am going for a 2nd opinion next Wednesday at the IU Simon Cancer Center- it is a couple hours from where I live, but I am hoping and trying to keep a good attitude, although today I am hitting a wall of some sort. I have not really broke down until this morning.

      over 4 years ago
    • carezeb's Avatar
      carezeb

      You need to a better Doctor and a better Hospital. The way they treated you could have been very dangerous.

      over 3 years ago
    • mistymaggie's Avatar
      mistymaggie

      Keep the faith and God Bless

      over 3 years ago

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