Newly Found Lung Mass

ClaCla
ClaCla Member Posts: 136

I had told Kimberly (kfs52) and Griffithds that I would start a new forum topic.  CSN member Loretta had suggested a separate forum, so that it would be easier to find responses.  I learned just a few days ago that a CT scan showed a 3 cm mass on my lung and my doctor says is very unlikely that it is NOT cancer.  I hope to find out tomorrow when I will get a PET scan.  Kimberly (kfs52) and Griffithds are at the same phase of discovery.

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Comments

  • starrkat
    starrkat Member Posts: 11
    PET scan

    Just wanted to let you and Kimberly and Griffithds know that people are thinking of you all and hoping for the best. I was in your position a few months ago and was very scared. But then treatment started and everything happened so fast, I didn't have time to be scared anymore. 

     

  • kfs52
    kfs52 Member Posts: 31
    ClaCla

    Please let us know how your scan goes - I am sending you best wishes from here! - Kimberly

  • ClaCla
    ClaCla Member Posts: 136
    starrkat and Kimberly

    Thanks, starrkat and Kimberly, for the kind comments.  PETSCAN is scheduled for this Friday evening, July 28.  Then doctor will be calling with the results around the following Monday or Tuesday.  Starrkat, is yours lung cancer?  What kind of treatments are you having, or would you prefer not to discuss?  Thanks again.

  • ClaCla
    ClaCla Member Posts: 136
    starrkat

    Starrkat, I just read your post about where you are at with treatment for lung cancer.  So I withdraw my question above.  Wishing you the best.

  • griffithds
    griffithds Member Posts: 2
    edited July 2017 #6
    starrkat said:

    PET scan

    Just wanted to let you and Kimberly and Griffithds know that people are thinking of you all and hoping for the best. I was in your position a few months ago and was very scared. But then treatment started and everything happened so fast, I didn't have time to be scared anymore. 

     

    Thank you

    Thank you so much Starrkat. I feel a little better today in that my PET showed lung is primary site and no metastases. First meeting at Mayo/Jax on Monday so I'll keep every posted as I travel this journey.

  • starrkat
    starrkat Member Posts: 11
    edited July 2017 #7
    ClaCla said:

    starrkat

    Starrkat, I just read your post about where you are at with treatment for lung cancer.  So I withdraw my question above.  Wishing you the best.

    Updated CSN space

    ClaCla, I updated my profile--added some info on side effects, etc. If I can answer any questions about what comes next, please let me know.

     

    Connie

  • starrkat
    starrkat Member Posts: 11
    edited July 2017 #8

    Thank you

    Thank you so much Starrkat. I feel a little better today in that my PET showed lung is primary site and no metastases. First meeting at Mayo/Jax on Monday so I'll keep every posted as I travel this journey.

    PET scan

    That's great news! Let me know if I can answer any questions.

    Connie

  • kfs52
    kfs52 Member Posts: 31
    PET Results

    Griffithds - please help me understand your PET results. What does it mean when they say "lung is primary site and no metastases". I consider myself pretty educated, but these doctors speak a language that we don't understand and they purposefully don't try to explain it to us - I think to keep us dependant on their advice instead of making decisions on our own. Who are you meeting with at Mayo/Jax on Monday, sorry, I mean what kind of doctor. Sorry if I sound so intrusive and you don't have to answer of course if you don't want to.....Did you get your PET results the same day that you took the test? Kimberly

  • ClaCla
    ClaCla Member Posts: 136
    edited July 2017 #10

    Griffithds, so glad to hear your good PET results.  Starrkat, thanks, I'll check out the update in your profile.  Kfs52, you may need to change doctors. This is just too much to go through without a personable, communicative doctor.  From experience with friends and a parent with cancer, I am pretty sure "lung is primary site and no metastases" means that the mass originated in the lung and has not spread anywhere.  Glad we have this site to discuss it all.

  • kfs52
    kfs52 Member Posts: 31
    edited July 2017 #11
    PET

    Griffithds that does sound like good news!

    ClaCla - you are not wrong, I feel like I am learning or trying to learn what is going on all by myself. Switching pulmonlogist would be the best thing for me. I made an appointment with my GP on Friday just to try to review with her what has occured and see if she can help me to understand what everyone has written in their notes. Maybe she will have a good recommendation. 

     

     

  • ClaCla
    ClaCla Member Posts: 136
    edited July 2017 #12
    starrkat -- Effects of Treatments

    Starrkat, did your treatments cause you to lose your hair?  Not important in the big scheme of things, but I'm wondering what might be ahead.  Also, did cancer or the treatments cause you to lose your appetite?  My husband and I have been on the Jenny Craig food plan for a couple of months and have each lost about 23 lbs.  I'd like to lose another 7 lbs, but since I learned about the lung mass, I'm wondering if I'll be losing weight anyway if I do have cancer.  It's a healthy food plan, so I don't intend to stop it unless my doctor tells me to stop.  Thanks for sharing your experience.

  • starrkat
    starrkat Member Posts: 11
    edited July 2017 #13
    Treatment effects

    Yes, hair started falling out about two weeks after first chemo treatment--slowly at first but then more and more. I was prepared for this and shaved my head before the next chemo round started. I had a wig, scarves, and hats all ready to go. 

    Also yes, I lost appetite and weight (about 25-30 pounds so far). Your oncology team will most likely give you anti-nausea drugs (probably steroids) along with pre-med fluids prior to your chemo drugs. They may also give you a prescription for oral anti-nausea drugs to use between chemo cycles. Zofran worked the best for me. But I have not had more than a few nausea-free days since this whole thing began. Taste and smell has changed completely for me; I can usually count on yogurt, Ensure, bananas, and Special K with fat-free milk. If you have radiation, you may have nausea and pain associated with that. I don't see why you couldn't continue Jennie Craig. If your course is like mine, you'll be lucky to find anything that doesn't make you sick. Sorry to sound so pessimistic, and keep in mind that your experience could be completely different from mine. 

    I went to many web sites for information on lung cancer (American Cancer Society, American Lung Association, Mayo Clinic, Web- MD, verywell.com, etc.) and found some good information. It seemed the more information I found, the less scared and more curious I was.

    I hope this helps. Let me know how your PET scan went when you get the results.

    Connie

  • ClaCla
    ClaCla Member Posts: 136
    edited July 2017 #14
    Effects of Treatment (Connie) & Primary Care Follow Up (Kimberly

    Thank you, Connie, for the information.  Very sorry the side effects have been so rough.  You are so good about sharing info on the CSN website in spite of what you're going through.  So again, thank you.  Had my first PET scan today, so will know more next week.

    Kimberly, how did your appointment go with your primary care physician today?  Did she help shed some light for you?

  • kfs52
    kfs52 Member Posts: 31
    edited July 2017 #15
    Hi

    Everyone

    I went to my regular doctor and she wants me to see another pulmonologist. So I have my PET scan tommorrow, old pulmonologist Thurs and making new appt with new pulmonlogist this week.

    I wanted to ask - does anyone cough up blood? I cough up blood like this evryone once in awhile for a couple of hours in each event.

    image

  • ClaCla
    ClaCla Member Posts: 136
    Kimberly and GriffithDS

    Kimberly, no I've never coughed up blood.  That looks like a lot!  So glad your PET scan is tomorrow and that you got info to contact a different pulmonologist.  You and I will get our PET results about the same time, as I should hear from my pulmonologist no later than Thursday.  I hope someone posts a reply to your question about coughing up blood.  

    GriffithDS, how did things go with your first meeting at Mayo today?

    Sending good thoughts and prayers to both of you.

  • kfs52
    kfs52 Member Posts: 31
    PET Scan

    Everyone

    I got my PET scan done today. A horrible thing happened, becasue I was going to a new pulmonologist next week, I started asking for copies of reports and scans (electronic form). So when I left, I don't know about you, but they gave me a copy of my PET scan. And yep, you guessed it, I looked at it right once I got home. I spent an hour doing a flip out dance, took a xanax and now I am starting to calm. I don't know what I saw. I know if things light up - that is bad. Things lit up. 

    Everyone, catch me up to where you are please! I think it will help me focus. I am parying for all of you.

    Kimberly

     

  • ClaCla
    ClaCla Member Posts: 136
    KIMBERLY PET SCAN

    Kimberly, I hope you've been able to achieve some peace since you posted about your PET scan.  I would have freaked out too, probably no matter what I saw.  My pulmonologist doesn't interpret the PET scan herself; she waits for the radiologist who specializes in this to provide his/her expert written opinion, and that takes a couple of days.  So when you see your current pulmonogist Thursday, that's probably what he/she will have on hand that you haven't received yet.  Were the lit areas in the lungs?  If I find any info on the Internet, I'll let you know.  Please be sure to keep us updated.  Have you checked out inspire.com, which is also a discussion site about cancer?  Hugz and prayers.

  • kfs52
    kfs52 Member Posts: 31
    PET SCAN

    Clacla,

    Looking at the inside of your body is really creepy. But what I saw before I flipped out was lighted areas in the brain, the area in the lung that has been a concern was lit up (upper right next to esophgas, lower bowels area was lit up (but that makes sense if the solution is attracted to sugar). It seemed like there were a few small areas, but to be honest, I am not fully sure I really knew how to use the software. I can see the heart and they saw that is fine. But there seems to be two other irregular areas on each side of my low back sort of. Then they show that picture looking from top of head down the chest and it is lit up like bright christmas tree. 

    Clacla, maybe you could ask for a copy of yours and compare.

    Anyway, I am praying for you - Thursday is a long time to wait for results. 

  • ClaCla
    ClaCla Member Posts: 136
    edited August 2017 #20
    PET SCAN

    Kimberly, when you say they are "lit up," are the lit areas red, or various colors?  I'll ask about getting a copy of mine, and will keep you posted.

  • kfs52
    kfs52 Member Posts: 31
    PET

    Clacla

    It depends, the software seems to let you change the colors of the 'interested' portions to any color you want. But there is a big difference between the 'not lit' portions and 'lit' portions. Believe it or not, we are all entitled to one copy for ourselves of the copies of our tests. 

    Kimberly