mary1958 Posted April 4, 2007 Posted April 4, 2007 Hi! I am not sure where the best spot is to post my questions but I guess I will start here. As I indicated in my intro, I have been found to have upwards of 8 or 9 nodules in both lungs. The largest is 5 mm. I have an appointment with a pulmonologist on Monday but am not quite sure of what I should be asking when I see him. The information I seem to be hearing is that small nodules are hard to biopsy. Should I expect to be told that it will be a watch and wait game? At what point may a PET scan be considered? From experience, can the look of the nodules, no matter how small, be more indicative of malignancy versus a benign finding? I have so many questions but not sure which should be asked given the small size of the nodules. Is there a significance to a larger number of nodules versus a signle nodule? Are these the questions I should be asking? If anyone has any suggestions of things I should be asking please let me know! Any information you can give me so I can be prepared will be greatly appreciated! Mary Quote
RandyW Posted April 4, 2007 Posted April 4, 2007 Mary Welcome and sorry you ahve to be here wiht us of course. try this list to pick and Chose as you feel the need to do soat various times. This was posted by Rich, as sticky in the Lung cancer News Forum. Should be a good start, and great ideas; Questions to Ask the Doctor Studies show that people with cancer who are fully informed about their disease and treatment options usually tend to fare better and experience fewer side effects than those who simply follow doctors' orders. Being informed gives you some control over your disease and encourages a positive outlook. Some people, however, tend to be overwhelmed by too much information or do not want to know as many details about their condition. It is important for you to identify how much information is right for you. Getting answers to your questions Your doctor should make time to answer your questions and explain various treatment options. Because you may feel overwhelmed by your cancer diagnosis, here are some tips to help you communicate with your doctor. Tell your doctor if you are having trouble understanding an explanation, description, or unfamiliar medical words. Sometimes, the doctor may be able to draw a picture or give an example. Consider writing your questions down in advance of a visit to reduce your level of stress and pressure for time. Bring a notebook or a tape recorder to the appointment. During the appointment, write down your doctor's answers, or ask a family member to write them down for you. This way, you can read or listen to the information later. Be patient. It may take a few meetings with the doctor before you begin to understand each other. Ask your doctor where you can find printed material about your condition. Many doctors have this information readily available. The Internet can be very helpful to people who are seeking information about their type of cancer, or those who are making decisions about their treatment. However, it is important to consider the reputation of the organization posting information, as not all information on the Internet is accurate. Like cancer information found in books, magazines, or newspaper articles, information on the Internet should be used for informational purposes only. If you have questions about the information you find, please talk with your doctor. If you are interested in seeking a second opinion, let your doctor know. Most doctors fully understand the value of a second opinion and are not offended when patients seek one. They may even be able to suggest another doctor. Suggested questions to ask the doctor An important part of managing your care is knowing what questions to ask of your doctor. Every person's needs are unique, and your questions will change during the different phases of your disease. Below are some examples of the types of questions you may want to ask your doctor. General information What causes this type of cancer? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? How many people are diagnosed with this type of cancer each year? What lifestyle changes (diet, exercise, rest) do you recommend I make to best manage my disease? Symptoms What are some common symptoms of this type of cancer? How can I avoid symptoms and/or reduce their impact on my daily activities? Is there anything I can do to make my symptoms better? Are there activities I should avoid that may make the symptoms worse? If new symptoms arise or existing symptoms worsen, what do you recommend I do? Diagnosis What diagnostic tests or procedures are necessary? How often? What will these tests tell me about my cancer? How can I prepare myself for any tests or procedures? Is this test done in a doctor's office, or do I need to go to the hospital? How much information concerning my diagnosis should I share, and at what time, with my friends and loved ones? If I seek a second opinion, will I have to repeat any tests or procedures? Staging How is staging used to determine cancer treatment? What is the stage of my cancer? What does this mean? Is my disease expected to progress? What is my prognosis (chance of recovery)? What are the cure rates for my disease? What are the survival rates for my disease? Could my disease go into remission? Treatment Keep in mind that all treatments offer risks and benefits. Discuss these with your doctor and consider your medical history and current condition in deciding whether the treatment approach is appropriate for you. What is the recommended treatment for my disease? Is this a standard treatment? Are there treatment options beyond the standard treatment for this disease? How often and how long will I have to undergo treatment? Are there any side effects of treatment? What are the benefits versus the risks of treatment? Has my cancer spread? If so, how does this affect treatment decisions? What are the expected results of treatment? How long does each treatment take? Is the treatment painful? What can you do to make it less painful? What will be involved in recovery? How long will I have to stay in the hospital? When can I resume my normal activities? Clinical trials What are clinical trials? How do clinical trials help people with cancer? Am I eligible for any clinical trials for this type of cancer? How will my progress be tracked while participating in a clinical trial? What happens if my disease progresses or is not treated effectively while participating in a clinical trial? How is treatment paid for if I participate in a clinical trial? Where can I get more information on clinical trials? Support Is there a social worker that I can talk to? Where can I find information on coping with my diagnosis? Where can I find emotional, psychological, and spiritual support? Where can I find financial support? How can I best minimize the psychological impact of this disease on my family and myself? Where can I find resources for children? For teenagers? Follow-up care Who should I call with questions or concerns during non-business hours? Where can I find more information about my cancer? May I contact you or the nurse to talk about additional information I find? Is there anything else I should be asking? Some of these questions were developed in collaboration with CancerCare, a national cancer patient service organization. In addition, see specific questions in the "Questions to Ask the Doctor" section of each cancer type. _________________ Quote
ernrol Posted April 4, 2007 Posted April 4, 2007 Mary, Randy gave you a pretty good list of questions. A lot of these may not be able to be answered because of unknown that you may not even have cancer. When and if you do get the answers to some of these questions, you must realize that cure rates, prognoses etc are all base on history. I for one would not pay much attention to some of those answers. Some doctors will outright tell you that they can’t tell for sure and would rather not make predictions. I would think you could ask about a PET scan. Very small tumors will show uptake on a PET scan that will not show on a CT scan. The problem like I have is they are too small to test and I have to do the wait in see any way. Let's continue to pray that they are not cancer. Stay positive, Ernie Quote
Debi Posted April 5, 2007 Posted April 5, 2007 Mary, All I can tell you is from my experience. When the 'shadow' in my lung first showed up, it was 11mm and not only too small to biopsy, but in a bad place to reach. I had a PET scan but was told that I would be lucky if it showed anything, since it was so small. It didn't. I ended up going back for a CT in 3 months, and the nodule had grown, so they elected to operate. I really don't know what type of questions you should ask Mary, but I wish you luck. The one thing that I would ensure though is that if they propose to follow-up, that they do so in 3 months or so, and not wait longer. Just my opinion. Quote
blaze100 Posted April 5, 2007 Posted April 5, 2007 Hi Mary, If you have good insurance coverage I think I would ask for any test that would give you a jump on a possible diagnosis. So I would ask if any of these nodules are in a position that would allow a biopsy - perhaps a bronchoscopy. Now bronchoscopy will not exclude cancer, but if it were to pick up something then you would be ahead of the game treatment wise. There is a small risk of complications with bronchoscopy and it is not pleasant. You could ask for a PET. It might show nothing and but there is always a chance it could show more than the CT. Also I would be interested in getting brain MRI and bone scans. Again, these could show nothing, but should something appear in the brain or on the bone, then it would be suggestive of mets. Some docs will say to wait amd see what develops. They might say statistics do not warrant being this aggressive. But if it is cancer, the sooner you know the better your chances. Just a thought. Good Luck Monday. Barb originally from Eau Claire. Quote
mary1958 Posted April 5, 2007 Author Posted April 5, 2007 Thank you all for your valuable insight. My anxiety is overwhelming me so I hope I can get some answers on Monday. I already have a follow-up CT scan scheduled in June. At least I know my PCP will not let this fall through the cracks. Does anyone have any experience with multiple nodules being found on an original scan? The stories I am reading all seem to be about either single nodules or, lesions large enough to biopsy. Thank you! Mary Quote
RandyW Posted April 5, 2007 Posted April 5, 2007 make sure you get a good aorganizer and keep lots of notes for Question and answers and appointments and test results and everything. have someone close like hubby or someone family related go along with you. Did you know that 95% of people suffer memory loss when they are naked in front of a doctor DOn't panic you won't be naked though HAng in there, Keep us posted and Good Luck. Quote
Andrea Posted April 6, 2007 Posted April 6, 2007 My dad had multiple small nodules. One looked a little different though. The one that looked a little different turned out to be bronchioaveloer carcinoma which is a very slow growing type of lung cancer. He had that tumor removed and needed no other treatment. They also biopsied a few of the other nodules while he was in surgery and those were not cancer. Right now the oncologist is monitoring all of the nodules and assuming they are not cancer if they don't grow. Quote
mary1958 Posted April 6, 2007 Author Posted April 6, 2007 Thanks for all of your responses! I have a good friend who is a physician who is going to attend the appointment with me so if I am naked and experiencee memory loss (Thanks for that one Randy! ), he will be there to ask all the right questions. Quote
john Posted April 7, 2007 Posted April 7, 2007 Multiple nodules could mean many things: A SPN (single pulmonary nodule) I think is more likely lung cancer than a MPN (mutiple pulmonary nodule). You can google on SPN or MPN to get more info 1) infectious granulomas 2) sarcoidosis 3) Wegener's granulomatosis 4) rheumatoid nodules 5) benign nodules 6) Churg Strauss Syndrome 7) metastic malignancy bronchioaveloer carcinoma "8)" turns in to a smile sorry Hopefully it is benign. Take care Quote
Maryanne Posted April 7, 2007 Posted April 7, 2007 I just want to wish you luck with you appointment and i am glad that you are bringing someone with you especially a doctor. If they are too small to biospy they just may want to wait until you June CT to see if there is any growth. Good luck and keep us informed. Maryanne Quote
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