Newly Found Lung Mass

2

Comments

  • ClaCla
    ClaCla Member Posts: 136 Member
    edited August 2017 #22
    PET Scan Copies

    Hi Kimberly, yes, the American Cancer Society says everyone should ask for a copy of PET scan up front.  I just forgot, so I'll call to find out how to get it quickly.

    I"ve put together a list of questions for my doctor when she calls me with the results, and thought I'd copy it here in case it's helpful to you:

    Scan Results

    • If cancer, what kind.
    • Where it originated and whether it has spread to lymph nodes or other parts of body.
    • Show any difference in tumor size since CT scan?  Was 3.5 x 4.5 cm.
    • Name of affected lobe, like superior or inferior lobe.
    • How definitive is the scan?  How accurate in detection of cancer and determining type and stage of cancer?

     Next steps 

    • Biopsy?
    • What kinds of treatment are likely to be used to treat this type of cancer?  Is surgery likely?
    • Survival rates of this type of cancer at this stage?

    I hope to hear from her today, but it may not be until tomorrow.   Best to you.

  • ClaCla
    ClaCla Member Posts: 136 Member
    edited August 2017 #23
    Doctor Called with PET Scan Results

    Was glad I had my list of questions above ready when the pulmonoligist called this morning.  The results of my PET scan are just about as good as can be expected.  There is 99% chance that it is cancer, but it doesn't appear to have spread.  Doesn't indicate what kind of lung cancer, but mass has not grown since CT.  Pulmonologist talked with surgeon and he expects to surgically remove the lobe, no biopsy first.  Lymph nodes don't appear to be affected although there are a couple nearby that are a little questionable that he will be biopsying.  Otherwise there is no evidence of it having spread anywhere.  I have a breathing test this Friday to confirm I'm eligible for surgery, but that shouldn't be a problem. Guesstimate is that the surgery will have been done within a month.  She doesn't know whether chemo or any other treatment will be required.  Surgeon will have more answers.  Waiting for a call from his office to schedule an appointment.  Thank you, God.  I pray my buddies Kimberly and Griffthds get some good news as well, but we'll be here to support each other either way.

  • kfs52
    kfs52 Member Posts: 31
    #24
    Clacla

    That is very good news, well the best one can hope for when we are at this stage! I am so glad for you. 

    Did the pulmonlogist have all the answers to your questions?

    I would still get a copy of your PET scan - I am a very visual person and I think it helps to actually see what it is you are dealing with. It is scary sure, but at least you can look at CY's and PET and see for yourself if there are changes.

    I have my appt with my pulmonlogist in the morning - he is making me go in - he won't call me with results.

    I have new pulmonlogist appt next Thursday.

    Wishing best thoughts for all of you as we make this journey!

  • kfs52
    kfs52 Member Posts: 31
    edited August 2017 #25
    PET scan results

    Everyone

    I am so confused. It is official, at this point I dont trust this pulmonologist to even correctly order me a Big Mac.

    I took Clacla's questions in with me prepared to ask them all.

    He first told me that I had maliginant cancer in my lung, neck, abdomen and pelvis and it was probably Stage 4. Then I started asking the question down Clacla's list.

    When we got to question 3, any difference in the size since Ct scan, he stopped and said 'sorry' he made a mistake, that I dont have cancer in my neck, abdoment and pelvis - just my lung. And that maybe it is not Stadge 4 but a Stage 3 or 3a.

    I went back to my question and he said it is the same size 5 x 8 x 5. I said that is not the same size, in my CT it was 3 x 3. He said oh yeah, its growing fast - we better do something quick.

    The only thing I wanted to do quick was get out of his office.

    Clearly he did not bother to read the report before telling someone he was handing them a life sentance. 

    He said he wanted to do a biopsy, but as I said, i dont trust him to order me a Big Mac, much less stcik something down my throat. I asked him why could he not just test all this nasty bloddy stuff I am coughing up - he said 'good idea' let me get you a sample cup.

    I left, I am not going back, I have a second opinion next week. 

     

  • ClaCla
    ClaCla Member Posts: 136 Member
    edited August 2017 #26
    KFS52's Nutty Pulmonologist

    OMG, what a terrible experience, Kimberly.  I'm sure you'll let your Primary Care doctor know so she doesn't recommend him again!  For the heck of it, Google his name and see what comments and ratings others have left about him.  You might also want to do that about your new pulmonologist.  I'll private message you.

  • Meggie1984
    Meggie1984 Member Posts: 14
    #27
    Similar diagnosis for me

    Hi Everyone,

    I jujst found this site an hour ago and was surprised----delighted????----well, that's probably too strong a word for finding a cancer page---but anyway, glad to find all of you.  I am in pretty much the sme place Kimberly and ClaCla are.  This May I  went for a routine visit to my pulmonologist whom I last saw  in May , 2016, while I was recovering from preumonia.   He had taken a chest X ray at that time and told me there was no more pneumonia  but to follow up with a visit in 4 months.  I kept putting off the follow up----there seemed no urgent reason for it--but in May of this year I finally went back

    This time he took anothe chest X ray and told me :  I see a small spot on it---probably scar tissue---but have a CT scan anyway.  So in a few weeks I had a CT scan and that scan was aslo inconclusive.  He then said   to wait 3 or 4 weeks and have a PET scan.  I had the PET scan five weeks later on July 21st.  On July 25th  my doctor first explained how the PET scan works and then told me It had lit up in the area of the nodule on my lung.  He said---I'm sending you to a surgeon  I know who is an expert  in this field because if it tuns out to be cancer, probaly surgical removal is the best option for you.  I went to see the surgeon last week, Thursday July 27.  I brought my daughter, an RN along.  He spent an hour with us explaining the PET scan findings.  He said there is still a chance that  the nodule is inflammation but we didnt get the impreesion that he expected such an outcome.  He explained that if it is cancer, three options are available:  wait and see which he didnt recommend; SBRT, a fairly new type of radiation treatment or surgical removal which he recommeded.  ( Though like a friend said to me, "Well.he's a surgeon.  He's probably not going to recommend radiation."  

    Anyway, his final r ecommendation was that I should have a needle biospy which is scheduled for this coming Tuesday, August 8th and then we will have a definitive diagnosis.  If I do need surgery, he will be able to do it robotically.  I saw him do one on a Youtube video--quite amazing.  I am still open to the radiaion treatment SBRT which only takes five days!  I do have a trip scheduled for the end of September.  Since my husband passed away in 2009, I have done a lot of traveling---solo---joined occasional group tours and rented apartments in some European cities.  This coming trip would be my third stay in Paris where I have an apartment reserved for three weeks so I have been practicing my French.  

    This is not my first time around with cancer.  I had surgery for colon cancer, stage !!!, 25 years ago and then chemo every week for a year.  Once again, I am happy to have found this forum, especailly because i wanted to let it be known that there  are many more options out there for the treatment of lung cnacer than there were even five or ten years ago.  Kimberly,  your encounters with that first doctor are a true horror story but I love the black humor that you used to help cope with it.    I will keep you all posted on the needle biopsy  experience and also on the results.  Your new friend, Meg

     

     

  • ClaCla
    ClaCla Member Posts: 136 Member
    edited August 2017 #28
    Meggie 1984

    Hi Meg, nice to meet you, even though the circumstances are lousy.  It sounds very positive that the spot on your lung is being called a nodule and not a mass.  Good luck with the biopsy, which should tell all.  Congrats on the 25 years post-colon cancer! Mine is a 3.5 x 4.5 cm mass, and my doctors don't want me to wait for a biopsy.   So I'm already scheduled to meet the surgeon for a consultation this coming Thursday, and then to have lobectomy just four days after that on Aug. 14.  My husband and I are so glad it's being handled so quickly, so we can understand the severity.  Keep us posted on how it goes with the needle biopsy!  Best success. 

  • Meggie1984
    Meggie1984 Member Posts: 14
    edited August 2017 #29
    ClaCla

    How nice to hear form you.  I have been reading all your posts ----in fact, I read them all a few times. I learned a lot and I copied your set of questions to use when I see my doctor again.  Just as you say, lousy news can be good news.  To think you have your surgery already scheduled  for only a week from tomorrow is a prime example of lousy good news.  Wonderful, I would feel like you and your husband----whatever it needs, get it done   The waiting around can be the worst part---as you can tell from reading so many posts.  From looking at the dates on this forum, it strikes me that this time last month the idea of lung cancer may have been the farthest thing from your mind.   In the past week after I told my family and some of my friens that I might ned a lobectomy, several of them have told me of peole they know who had one and are doing fine, thank you.  All goes well and it wil be the same for you.  I will let you know the results of my biopsy and do let us know how you are doing after the surgery.  You go,girl!

  • kfs52
    kfs52 Member Posts: 31
    edited August 2017 #30
    Hi ClaCla and Meggie

    Clacla, you be strong, I know your dates are very quick, but take your own advice - take lists of questions and make sure you get detailed answers. Like Meggie, I also printed off your questions and used them and intend to do so again this week with the 'new' pulmonologist.

    Meggie it sounds like we were diagnosed the same way. Actually mine started with a weird earache, a week of steroids later, then my chest hurt. Its strange, I still get that weird earache on some days and no one has been able to explain that to me and it actually hurts pretty bad sometimes. 

    Anyway, it sounds like we all have a busy month!

    I just got back from visiting family for the weekend. I am determined to not tell them anything. I do not want to scare them or ruin thier joy. It was hard, but I know this is the right thing to do.

    Take care and be strong my friends.

    Kimberly

  • ClaCla
    ClaCla Member Posts: 136 Member
    #31
    Had Consult with Surgeon Today

    Met with surgeon this morning. I was glad to hear if this is cancer, it is probably in the NSCLC category from the way the PET scan looks.  At this time he thinks it is probably at stage 1B to 2A, although more likely to be 1B, since it doesn’t appear to have spread (although there is a suspicious lymph node or two, that are really thought to be okay).  If it is cancer, he will know immediately following surgery, on Monday, Aug. 14.  And generally the full pathology report should be back by Friday, Aug. 18.  Hooray, he can do it by VAT rather than open surgery.  I should be in the hospital 5 days and recuperation should take 4-6 weeks.  If it is cancer, I will be referred to an oncologist who will determine whether chemo is necessary.

    I was nearly frozen with fear last night and this morning; took great effort to get dressed.  But my husband and I feel a lot lighter after the consult with the surgeon.

    I am especially eager to hear how everything is going for Kimberly (KFS52), GriffithDS, and Meggie 1984, who are about at the same discovery stage as me. 

    Thanks for everyone's prayers and good thoughts.  Sending blessings to you.

     

  • kfs52
    kfs52 Member Posts: 31
    #32
    More Mess Ups

    Everyone

    I just got back from my second visit with the new pulmonologist in 24 hours. I took one of those tests you take where you breathe a lot to prove you can survive surgery or a procedure. I told the nurse of the mess up with my pulmonologist (i.e. the whole you have Stage 4 cancer by mistake thing). The nurse came back the told me the doctor had a patient last year who came in after going through chemo only to find out that he never had cancer. This guy worked in some field where they put cotton in their nose and ears and a piece broke off and went into his lungs and everyone called and treated it as cancer. This doctor took him as a patient and finally got the cotton out of his lungs and he felt so much better. 

    Guess that explains the power of a second opinion huh?

  • Meggie1984
    Meggie1984 Member Posts: 14
    #33
    The mess ups continue for you!

    Hi Kimberly,  What a fascinating but scary story.  However, the  story does make it seem as though your new pulmonologist has a lot more on the ball   

    Though, actually, your fist guy shouldnt even be loowed to practive.  Your experience with him was a true horror story.  You mentioned that this was your second visit in 24 hours.  Have you learned anything about here you are really at -----do you even have lung cancer?  Any explanation for the blood?  Coughing up blood has to be very upsetting.  

     

    I finally had my biopsy on Tuesday----2 week wait because the dr who does them was on vacation  What else is new.  First, the scheduler told me I would hear one way or the other withing 24 hours.  Then just after the biopsy a nurse there told me 2 or 3 days.   Yesterday,  I called the office of my pulmonologist and asked her when I cold expect to hear.  They are all very caring and concerned over there.  I repeated what I had been told.  She said, "Oh, I'm so sorry.  We wont even get them back here in the office for five or six days  He always calls his patients the minute he gets results but it will nprobably not be until this coming Tuesday.  

    Another week of not knowing---although i fully expect a diagnosis of cancer---hopefully Stage 1 since the spot has been termed a nodule. I wenr online yesterday and set up an pnline account called MY CHART--NYU since my guy is one of their doctors.  I found my scan results already posted online----chest X ray May, 2017----CT scan June 2017----PET scan July, 2017.  The only words that jumped out at me wee:  "---hypermetabolic activity worrisome for malignancy."        If I have to have surgery---and that is what I expect---I would like to get things moving-- at this rate I'll be in the hospital for Christmas (Joke)  Cla Cla has been fortuante in that her doctors are not wasing any time. She will be through with the surgery on Monday and please God, she will be feeling up and positive.  Good thoughts to you, Kimberly.  You seem to have a good, dry sense of humor----"I wouldnt trust him to order me a Big Mac"-----and, being Irish, wwe use black humore to deal with everything.  God bless

      I

     

     

  • sondrahays
    sondrahays Member Posts: 23
    #34
    THIRD OPINION

    My husband was diaognoised in June of this year, after three months of being told by several doctors, ER that he had Pneunomia. he was on antibitocs for months. His cough just presisted and got worse. we had a xray 5/16 said he just pneumonia. two weeks later a repeat and he had one mass that was 8.5 x 3.5 or close to that. our heads were spinning. we have gotten treatment for two rounds of chemo. thankfully his PET and other test have been clear that he has it nowhere else. but we were told by the doctor treating him, that he was still considered extensive and they would not be going for a cure because of th size of the tumor. again, we were baffeled by all this. we did the first two rounds and his cancer responded better than average shrank over 50% and his doctor still told us he would not do radiation AND did not tell us how much he had responded to chemo.  he was just given him quality of life 12-18 months. I was so upset that this doctor would treat us as if we just had to deal with this and take treamtent has he wanted us to. I told my husband, we were going again for another opinion (third one). thank goodness we did, he is now going to be treated at the Cleveland Clinic and will get raditation and chemo together, while they said they could not guarantee a cure, he had a chance.!! And that was music to our years. my advice is get as many opinions as you can, and do not let one doctor decide your fate. you are in control of your body and your treatment plan. I read all these blogs above, prayers and best wishes to you all.

  • Meggie1984
    Meggie1984 Member Posts: 14
    #35
    MANY OPINIONS

    Hello Sondra, I read your post and felt so upset for you and what you were going through.  But like a happy ending in a scary tale, when i saw Cleveland Clinic my heart rejoiced for you.  There are surely  some cancer hospitals in the US as good as the Cleveland Clinic but none better!  When cancer comes into your life it is like a bad dream----something you have no control over.  But we do have control about how we are going to deal with it and God bless you for holding out for that third opinion.  No matter what happens from now on, you will have the comfort of knowing that you did everything humanly possible to handle this most unwelcome intruder in your life.  I love the photo you posted of the two of you---it's like I can feel the love between you.  Good thoughts to you and your husband.

  • Meggie1984
    Meggie1984 Member Posts: 14
    edited August 2017 #36
    griffithds said:

    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.

    Your visit to Mayo Jax

     I saw  a few of your posts with ClaCla and I was wondering how you are doing.  You and I---plus ClCla and Kimberly---are at about the same poin in this most unwelcome journey I too had a PET scan on July 21st anad on July 25th my pulmonologist tole me that the nodule he had seen on the CT scan had lit up in the PET and that I should go for a biopsy.  I has my biopsy thi spast Tuesday but i wont get the rsults until this coming Tuesday, Aug. 15th.  I hope you are feeling positive about your decision to go to Mayo Clinic Jax.  They are one of the bst in the country.  And I hope they are taking good care of you.  

  • sondrahays
    sondrahays Member Posts: 23
    #37
    Meggie1984 said:

    MANY OPINIONS

    Hello Sondra, I read your post and felt so upset for you and what you were going through.  But like a happy ending in a scary tale, when i saw Cleveland Clinic my heart rejoiced for you.  There are surely  some cancer hospitals in the US as good as the Cleveland Clinic but none better!  When cancer comes into your life it is like a bad dream----something you have no control over.  But we do have control about how we are going to deal with it and God bless you for holding out for that third opinion.  No matter what happens from now on, you will have the comfort of knowing that you did everything humanly possible to handle this most unwelcome intruder in your life.  I love the photo you posted of the two of you---it's like I can feel the love between you.  Good thoughts to you and your husband.

    Thank you

    Thank you Meggie for the kind words, I have found relief in this site that there are others who understand and can relate to what we are going through. have you been to the Celveland Clinic? We leave tomorrow for his first treatment Wed starts chemo/radation sametime. nervous, but also very happy we are getting a shot at this! And you are right, now moving forward I can know I have done all possible to give my husband a chance, he truly is my soul mate we have had very little time together before he got sick. but I feel like we have been together forever. I pray and I keep faith. again, thank you for the kind words best wishes and thoughts to you as well.

     

     

  • Meggie1984
    Meggie1984 Member Posts: 14
    #38
    ClaCla said:

    Had Consult with Surgeon Today

    Met with surgeon this morning. I was glad to hear if this is cancer, it is probably in the NSCLC category from the way the PET scan looks.  At this time he thinks it is probably at stage 1B to 2A, although more likely to be 1B, since it doesn’t appear to have spread (although there is a suspicious lymph node or two, that are really thought to be okay).  If it is cancer, he will know immediately following surgery, on Monday, Aug. 14.  And generally the full pathology report should be back by Friday, Aug. 18.  Hooray, he can do it by VAT rather than open surgery.  I should be in the hospital 5 days and recuperation should take 4-6 weeks.  If it is cancer, I will be referred to an oncologist who will determine whether chemo is necessary.

    I was nearly frozen with fear last night and this morning; took great effort to get dressed.  But my husband and I feel a lot lighter after the consult with the surgeon.

    I am especially eager to hear how everything is going for Kimberly (KFS52), GriffithDS, and Meggie 1984, who are about at the same discovery stage as me. 

    Thanks for everyone's prayers and good thoughts.  Sending blessings to you.

     

    Thinking of you

    My dear Clacla

    I am thinking of you today as you undergo your surgery----I am thinking of you all the time:  sending love, courage, prayers and hope on their way to you.  Meggie

  • kfs52
    kfs52 Member Posts: 31
    edited August 2017 #39

    Meggie,

    Have your gotten your biopsy results yet? I know my doctor said it could take a few weeks to get them back once he does my procedure tommorrow - I just don't know how you paiently wait for that without going crazy....

     

    To Clacla - you are in my thoughts and prayers today my friend, I just know you came out of surgery okay and will update us when you can.

    Kimberly

  • Meggie1984
    Meggie1984 Member Posts: 14
    #40
    biosy rtesults

    Hi Kimberly

    I didnt realize you were having a biospy.  Well, as i wrote elsewhere thee was nothing to it---no pain, a little trace of discomfort. But tomorrow  is a week since I had it,  The person who scheduled it told me it would only take 24 hoursfor results, the nurse at the biopsy told me it generally takes two to three days.  the day after the B I called my pulmonologist and his assistant told me it wouldd probably be a week-----which is tomnorrow.  I cannot---cananot!---imagine waiting A FEW WEEKS  to get the results.  One week has been difficult enough.  I will post when I know.  There is a chance it is not cancer but the doctors give the impression that they expect it will be.  Take it easy---I will be thinking of you.  I wrote a little text to ClaCla but I think I sent it as Private Message unintentionally----my mistake.--but no harm done.

  • Meggie1984
    Meggie1984 Member Posts: 14
    edited August 2017 #41
    sondrahays said:

    Thank you

    Thank you Meggie for the kind words, I have found relief in this site that there are others who understand and can relate to what we are going through. have you been to the Celveland Clinic? We leave tomorrow for his first treatment Wed starts chemo/radation sametime. nervous, but also very happy we are getting a shot at this! And you are right, now moving forward I can know I have done all possible to give my husband a chance, he truly is my soul mate we have had very little time together before he got sick. but I feel like we have been together forever. I pray and I keep faith. again, thank you for the kind words best wishes and thoughts to you as well.

     

     

    Cleveland Clinic

    hello Sondra

    You will be on your way to Cleveland very soon.  There are a few medical people in my family and they are very knowledgeable about the best hospitals in the whole country for various conditions. A few of them mentioned that MC Andrson in Houston , Sloan Kettering in NYC and the Cleveland Clinic were among the oustanding hospitals for cancer in the US.  My brother-in-law was diagnosed with Stage !V melanoma with mets 12 years ago.  He was treated at Sloan and is living his life happily.   So anything  is possible.  You both have such a good spirit and good atitude--it will help you go far.  Thank you for your well wishes for me.  

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