lungs showing activity again

pem
pem Member Posts: 81 Member
edited June 2014 in Anal Cancer #1

hello all again!  i truly appreciate all your responces when i ask a questions.  well i got my cat scan results and the dr says its still all good.  i should be happy right ?  well im not , in fact im kinda scared.  this is my 4th cat scan since i finished treatment.  on my first one i had fluffy looking  nodules everywhere, which got bigger on my second one but shrunk on my third.  the ones that shrunk are still shrinking and some even gone, however new ones are now in other places.  they said possible due to having asthma or infection.  is that somehing i should be ok with or should i get a second oppinion.  my scan is all clear down in other area as well as organs and surrounding area.  apparently one of my aortas to my heart is also screwed up too.  his answer to that was to maybe mention it to my family dr.  dont get me wrong he is a kind and helpful oncologist dr but that doesnt help if im dying right of lung cancer.  if any one knows the names of the best drs in america or canada that has experiance with anal cancer i would definetly like that information please.  thanks again everybody  !  god bless you all!   pem

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    pem

    I get totally freaked out when something shows up on a scan that cannot be identified and it can only be narrowed down to some possibilities as to what it is, so I completely understand your concerns.  I have lots of calcified granulomas in my lungs, which sounded scary until it was explained to me that "calcified" means old and that they've been there for years, most likely due to an old infection of histoplasmosis.  Calcified would indicate also that they are not changing from scan to scan.  However, it sounds like that is not the case with you.  I would never discourage anyone from getting a second opinion.  I don't know where you are located, but my top pick of doctors who have expertise in treating anal cancer, either at initial diagnosis or in cases of mets or recurrence, would be Dr. Catherine Eng at MD Anderson in Houston.  It's my understanding that you can self-refer to MDA, so your oncologist's referral would not be necessary.  Two other top-notch doctors would be Dr. Berry with Univ. of California/San Francisco and Dr. Martin Weiser at Memorial Sloan Kettering in NYC (who is highly praised by Sandy on this board).  I suggest googling these doctors to check out their areas of expertise.  Please keep us posted.  I hope all of this turns out to be nothing of concern. 

  • pem
    pem Member Posts: 81 Member
    #3
    mp327 said:

    pem

    I get totally freaked out when something shows up on a scan that cannot be identified and it can only be narrowed down to some possibilities as to what it is, so I completely understand your concerns.  I have lots of calcified granulomas in my lungs, which sounded scary until it was explained to me that "calcified" means old and that they've been there for years, most likely due to an old infection of histoplasmosis.  Calcified would indicate also that they are not changing from scan to scan.  However, it sounds like that is not the case with you.  I would never discourage anyone from getting a second opinion.  I don't know where you are located, but my top pick of doctors who have expertise in treating anal cancer, either at initial diagnosis or in cases of mets or recurrence, would be Dr. Catherine Eng at MD Anderson in Houston.  It's my understanding that you can self-refer to MDA, so your oncologist's referral would not be necessary.  Two other top-notch doctors would be Dr. Berry with Univ. of California/San Francisco and Dr. Martin Weiser at Memorial Sloan Kettering in NYC (who is highly praised by Sandy on this board).  I suggest googling these doctors to check out their areas of expertise.  Please keep us posted.  I hope all of this turns out to be nothing of concern. 

    mp327

    thank you so much for that information. did one of those dr treat you as well?  hope everything turns out well for you and your up coming scan also.  you are in my prayers.  pem

  • mp327
    mp327 Member Posts: 4,440 Member
    #4
    pem said:

    mp327

    thank you so much for that information. did one of those dr treat you as well?  hope everything turns out well for you and your up coming scan also.  you are in my prayers.  pem

    pem

    None of those doctors have treated me.  However, I have been active on 3 support sites for anal cancer for over 5 years now and these doctors' names come up time and time again as experts in the field of treating anal cancer.

    Thanks so much for the prayers!  I will be posting results soon!

  • lizdeli
    lizdeli Member Posts: 569 Member
    #5
    mp327 said:

    pem

    None of those doctors have treated me.  However, I have been active on 3 support sites for anal cancer for over 5 years now and these doctors' names come up time and time again as experts in the field of treating anal cancer.

    Thanks so much for the prayers!  I will be posting results soon!

    Pem

    I was treated by Dr. Cathy Eng at MD Anderson.  Top notch in my book.

    Wishing you well,

    Liz

  • pem
    pem Member Posts: 81 Member
    #6
    lizdeli said:

    Pem

    I was treated by Dr. Cathy Eng at MD Anderson.  Top notch in my book.

    Wishing you well,

    Liz

    Lizdeli

    Thanks for telling me you were treated by that dr. I'm really bad at looking up numbers to places , if possible can you give me that phone number to her office in Houston ?  I'm really thinking about getting a second opinion .  I read your story in your csn space and saw how much chemo you had. Did you have the chemo for six weeks , five days a week , pumping 24 hr a day ?  We only had it on two intervals which lasted for about 4 days pumping 24 /7.  If I'm mistaken I remember it being written that you were stage 3a ?  I was stage 3 b and received the standard treatment. Hope all is well with you.  god bless!  Pem

    ps thanks again mp327 and I'm thinking about you today! :)

  • sandysp
    sandysp Member Posts: 868 Member
    #7
    Pulmonologist

    I have seen two Pulmonologists about my scans at the recommendation of my treating Oncologist at Sloan Kettering. Neither knows what is wrong with my lungs. We are on a watch and see. Like your scans, things have changed. My mass got smaller but more "cystic". It is too close to my heart to needle biopsy. I also have some hiliar nodes lighting up and like yours, that isn't exactly consistent scan to scan either. 

    We just have to try to realize that once we have had cancer we have to live with these things. Life is changed for us. 

    Try to enjoy your days. That's the key. 

    I can get very obsessive about things. I would recommend, as your Oncologist should have recommended, you get a Pulmonologist to review the scans and explain to you what they think it is.

    Good luck,

    Sandy

  • nicotianna
    nicotianna Member Posts: 209
    #8
    sandysp said:

    Pulmonologist

    I have seen two Pulmonologists about my scans at the recommendation of my treating Oncologist at Sloan Kettering. Neither knows what is wrong with my lungs. We are on a watch and see. Like your scans, things have changed. My mass got smaller but more "cystic". It is too close to my heart to needle biopsy. I also have some hiliar nodes lighting up and like yours, that isn't exactly consistent scan to scan either. 

    We just have to try to realize that once we have had cancer we have to live with these things. Life is changed for us. 

    Try to enjoy your days. That's the key. 

    I can get very obsessive about things. I would recommend, as your Oncologist should have recommended, you get a Pulmonologist to review the scans and explain to you what they think it is.

    Good luck,

    Sandy

    pulmonologist

    Sandy - I am curious about your hilar nodes.  Have you had a PET/CT?  I have a rt. hilar node that lit up.

    Nic

  • sandysp
    sandysp Member Posts: 868 Member
    #9
    nicotianna said:

    pulmonologist

    Sandy - I am curious about your hilar nodes.  Have you had a PET/CT?  I have a rt. hilar node that lit up.

    Nic

    Hiliar node

    They said it could have just been from inflammation. It has been lit up the whole time, apparently. I just had a new scan, The bottom part of my lung now has new nodules and the top has a mass that was there and has gotten larger, it is collapsing that part of the lung apparently. The Hiliar node isn't my biggest concern right now.

    I don't see the Pulmonologist at the cancer center until September 8th unless they call me sooner. I am wait listed. I am interested, naturally in what he thinks it is. My Oncologist believes it needs to be biopsied so we can determine what it is that is changing my lung. The Hiliar remains consistant - no change there.

    All the best,

    Sandy

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