Numerous lung nodules - Anyone else have experience with this?

shamrocklady
shamrocklady Member Posts: 20
in Kidney Cancer #1

Hello Everyone,

I am new here. My dad was diagnosed with clear cell RCC in November 2013 and had a radical nephrectomy. He is in his late 60s. Primary tumor was quite large ~13cm though thought to be encapsulated in the kidney. We are now 3 months out and had a follow up CT scan which revealed metastatic disease to the lungs. There are somewhere near 20 lung nodules, most fairly small (but yikes! 20!), the largest at about 2cm. No other concerning organs. (We do not yet have an oncologist, but are in search of one ASAP!) 

Every bit of information I have read in terms of studies and treatment talk about 1 or 2 or maybe even up to 5 pulmonary nodules, but not 20.  I am so worried. I have no idea how fast these grow! We don’t have much to compare to because the original CT scan was only of the lower abdomen and only showed a couple of nodules just in the very lower lobes of the lungs. 

Does anyone have any experience to share about such numerous pulmonary nodules  or even what specific questions to ask of the oncologist?  

Thank you all very much for reading.

Comments

  • GSRon
    GSRon Member Posts: 1,303 Member
    #2
    Welcome to  our exclusive

    Welcome to  our exclusive group... sorry you need to be here.  Nice that you are watching out for your Dad...!   OK, I have no idea how many lung Mets I have..  They do not care much about the tiny ones right now.  My largest was about 8 CM, to give you a comparison.  Yes you need to find a proper Oncologist ASAP.  The right Doctor can make a huge difference..

    BUT please give us some info like where you are and how far you are willing to travel.  There are folks here that may be able to give you a recommendation.  You can put that info in your profile page if you want.

    There are many good drugs to treat clear cell Mets.  The good news is that there are some drugs in pill form, so they are easy to take.  Side effects are different just like people are different.  No way to know for sure what the side effects will be.  The most common S.E.'s I hear of are fatigue, hypertension, diarrhea.  But some folks have none of these.. some have more..  

    Feel free to holler at this group with questions or just to vent...  I know it is scarey, but if your Dad's general health is good, then expect good results..!

    Good Luck..!

    Ron

  • shamrocklady
    shamrocklady Member Posts: 20
    #3
    GSRon said:

    Welcome to  our exclusive

    Welcome to  our exclusive group... sorry you need to be here.  Nice that you are watching out for your Dad...!   OK, I have no idea how many lung Mets I have..  They do not care much about the tiny ones right now.  My largest was about 8 CM, to give you a comparison.  Yes you need to find a proper Oncologist ASAP.  The right Doctor can make a huge difference..

    BUT please give us some info like where you are and how far you are willing to travel.  There are folks here that may be able to give you a recommendation.  You can put that info in your profile page if you want.

    There are many good drugs to treat clear cell Mets.  The good news is that there are some drugs in pill form, so they are easy to take.  Side effects are different just like people are different.  No way to know for sure what the side effects will be.  The most common S.E.'s I hear of are fatigue, hypertension, diarrhea.  But some folks have none of these.. some have more..  

    Feel free to holler at this group with questions or just to vent...  I know it is scarey, but if your Dad's general health is good, then expect good results..!

    Good Luck..!

    Ron

    Thanks Ron!

    Ron, I appreciate your quick response. Would love it if you or anyone could recommend an oncologist.  Right now we will be looking around St. Augustine, Florida- a little over an hour from Jacksonville and the Mayo clinic there. But also have a home base in connecticut  and have the ability to go back to the Hartford CT area. Does anyone have oncologist recs for either area??  As far as how much we are willing to travel, at this point I think my dad would like to find someone within an hour drive Of either st. Augustine or Hartford. As for me, I feel like going to the ends of the earth to find the right doc.  -SL

  • DMike
    DMike Member Posts: 259
    #4
    Lung Nodules

    I have 20+ lung nodules and I'm still around 26 months after my partial nephrectomy. My nodules were discovered 12 months after my primary tumor was removed.

    A good start, if you haven't already done this, is to get a copy of your Dad's pathology report and Radiology reports and learn more about his renal cell carcinoma. I have Clear Cell RCC which occurs in the majority of cases. There are also chromophobe, papillary and unclassified types, maybe others, I'm not sure about that.

    There are a lot of treatment options and trials available. I tried high dose IL-2, which did not work for me, Votrient/Pazopanib (oral med) which worked for me but not my liver and I'm now on Inlyta/Axitinib (oral med).

    Now is the time to find a good oncologist. This site is filled with great information. Another site you should read is SmartPatients.com in the kidney cancer forum. There are a lot of people with metatstatic disease there. Both sites are loaded with good people.

    Here's a link with a discussion of RCC Oncologists:

    https://www.smartpatients.com/forums/1-conversations/topics/1844-kidney-cancer-specialists-rcc-oncologists#sbposts-18087

    I wish your Dad good luck.

    David

  • Eliezer2
    Eliezer2 Member Posts: 85
    #5
    I am in the same club, with lots of lung nodules

    They were discovered almost 3 years back.   The Sutent shrank most of them to the point of undetectable to the CT-observing eye and the rest shrank and then stabilized.  They are still there, but as long as they are not misbehaving, then party away.  In fact, sing "Ain't Misbehavin'!!   You can do standard lung function tests, and of course blood tests.  If the machinery appears to be working, do not sit around and drive yourself into anxiety about the nodules.  Go back to living!

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    #6
    shamrocklady said:

    Thanks Ron!

    Ron, I appreciate your quick response. Would love it if you or anyone could recommend an oncologist.  Right now we will be looking around St. Augustine, Florida- a little over an hour from Jacksonville and the Mayo clinic there. But also have a home base in connecticut  and have the ability to go back to the Hartford CT area. Does anyone have oncologist recs for either area??  As far as how much we are willing to travel, at this point I think my dad would like to find someone within an hour drive Of either st. Augustine or Hartford. As for me, I feel like going to the ends of the earth to find the right doc.  -SL

    Hi shamrock lady.

    Many of us have or had lung lesions. And liver, and lymph nodes, and brain, and rib, and pelvis, and spine......Whether it's one or twenty, the right treatment will help control these things.

    I am in the Hartford area. Now before you panic, let me tell you that once I found out that I had 20ish tumors, I started getting scared because my oncologist at Bristol hospital said there was nothing they could offer me at that stage except a prognosis of 6 months to live. So I went to Uconn. Yep. Same answer. Nothing they could offer me. So I went to Hartford hopital. A friend pulled some strings and got me in to see their top cancer specialist. You really want to know what he said? "Good luck." I asked about IL-2. He said ,"If you were a family member, I would tell you to go for it. But we don't offer it."  Gee, thanks alot sh!t head. Pay the lady $450 on your way out the door please. Now you can panic. The only place I could find was Smilow cancer center at Yale New Haven that offered it. So off to Yale.

    I made an appt. with Dr. Kluger. She said that they could offer me the IL-2, but,........"Would you be interested in a trial drug with great promise?"  I was fortunate to qualify for a trial with nivolumab and started recieving infusions every 3 weeks. If you are not familiar with this drug, it is going to be the magic bullet for many, many people. A couple, 3 months later, almost ALL my tumors were gone!! I stayed on this drug for about 18 months until I did have some new tumor growth which disqualified from further treatments. I then had the IL-2 and am doing well. There remain a few small but stable tumors which she thinks will continue to improve. Today I am strong and fit. Next month is 3 years since nephrectomy. My future is so bright, that I gotta wear sunglasses.

    Dr. Kluger is not a kidney cancer specialist per se. She is an immunologist. Finding ways to get ones own immune system to fight cancer is the state of the art right now. Yale is involved in much immunological therapy with approved drugs and trial drugs. Dr. Kluger and Yale have saved my life. I suggest that you save yourself some time and call Yale Smilow Cancer Center first. See if they have the answers that you want. I am a happy, happy boy for having done so. I am also in my 60's. I look and feel better than most people my age. I can't offer much more testimonial than that. Good luck to pops.

  • shamrocklady
    shamrocklady Member Posts: 20
    #7
    Eliezer2 said:

    I am in the same club, with lots of lung nodules

    They were discovered almost 3 years back.   The Sutent shrank most of them to the point of undetectable to the CT-observing eye and the rest shrank and then stabilized.  They are still there, but as long as they are not misbehaving, then party away.  In fact, sing "Ain't Misbehavin'!!   You can do standard lung function tests, and of course blood tests.  If the machinery appears to be working, do not sit around and drive yourself into anxiety about the nodules.  Go back to living!

     

    Amazing group

    I'm really appreciative of all your responses...Fox, David, Eliezer! Fox thank you for the very specific recommendation. I will for certain look into Yale and Dr. Kruger. David- I do have the reports and it is clear cell type.

    I am feeling more hopeful knowing of all the recent drug advances in the last several years and hopefully the stage 4 RCC survival stats aren't so accurate anymore with all this recent innovation. Best to you all. -Shamrock

  • GSRon
    GSRon Member Posts: 1,303 Member
    #8
    shamrocklady said:

    Amazing group

    I'm really appreciative of all your responses...Fox, David, Eliezer! Fox thank you for the very specific recommendation. I will for certain look into Yale and Dr. Kruger. David- I do have the reports and it is clear cell type.

    I am feeling more hopeful knowing of all the recent drug advances in the last several years and hopefully the stage 4 RCC survival stats aren't so accurate anymore with all this recent innovation. Best to you all. -Shamrock

    Stay off the internet.. It

    Stay off the internet.. It will drive you crazy. All the statistics are old. Drugs like Votrient were not approved back then. Plus there are several new drugs being tested with great early results. And more to come maybe this year. Ron

  • saintmont
    saintmont Member Posts: 63
    #9
    lung nodules

    Hi, I have 9 lung nodules ranging from 10mm to 1.5mm. I had right kidney removed 2 1/2 years ago I had 2 tumors on the kidney. I am on votrient for the last 12 months every thing is stable at the moment. I still work full-time, play golf, walk and still do everything what I was doing before this happened. I'am on holidays at the moment painting the house I will be glad to get back to work for a rest !!!.

    Regards SAintmont

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