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Posts posted by fauna13

  1. Hi Curt, thank you for sending some questions.  I knew about bio-markers but had no idea they could provide information regarding recurrence.  Thank you for that info.  It is strange as they tested her for all of the bio-markers but didn't even review the report with us.  We've asked numerous times but they keep saying it is currently irrelevant as chemorad and surgery are the best options.  

    Thanks again.

  2. Hello all,

    I have posted before but will give a brief summary in case anyone wants it.  My mom was diagnosed with lung cancer in November of 2018.  Her tumor was approximately 3.5 by 5 cm and in the middle lobe.  She had regional lymph node involvement.  She was otherwise in good health.  Ultimately she has concurrent chemoradiation followed by surgery to remove the lobe.  Her body handled the chemoradiation well (she did have a few trips to the ER but all in all, it went well).  She was able to have two courses with no extreme side effects.  Surgery was without complications.  On removal all involved lymph nodes and the tumor looked dead.  The pathology report confirmed that this was the case.  Scans show no cancer elsewhere.  Monday the 20th will be a follow up appointment with her medical oncologist and radiologist.  We are so lucky and thankful that things have gone so well for her.  However, we still want to make sure that we ask any important questions when we meet with the doctors on Monday.  I researched this treatment options extensively but have found little on this topic.  Can any one advise what they think we should ask at this point?  Perhaps anyone can share what they wish they has asked, but didn't know at the time to ask?  Any insight would be greatly appreciated.  

    Thank you!

  3. Hello all,


    Thank you for all of your thoughts.  We now have all of our treatment options and I was hoping to see if anyone has input on which way to go.  Thankfully, all of the options involve surgery.  They are

    1. Chemo followed by surgery.  After surgery, radiation if lymph nodes on 2nd biopsy are still involved (carboplatin based chemo)

    2. Trimodality: concurrent chemo and radiation followed by surgery (cisplatin)

    3. Immunoradiation clinical trial: concurrent radiation and immunotherapy with IMFINZI® (durvalumab) followed by surgery and possibly though not necessarily chemo


    The center offering option 1 says that radiation is toxic and should be withheld unless necessary.  Also, that she should not have it prior to surgery as it increases complications.  Also, that she cannot get durvalumab with surgery.  She can decline surgery and get it however, though they do not recommend this, saying surgery is best.

    Our second center is offering options 2 and 3.  They believe radiation is important and significantly reduces local recurrence (their stats are by up to 30%).  They say she's a perfect candidate for trimodality treatment as she is otherwise very healthy.  Also, that trimodality is what they consider the gold standard for treatment in her case (cancer in the central lymphs but to a very minimal extent).  However, we are also told that durvalumab offers a huge hope for remission, likely a much larger hope than chemo.  However, they have not data so are underlining the risks.  


    I have more info on their thoughts etc. but wanted to spare you unnecessary details.  If you have any questions please ask me and hopefully I will know the answer.  


    Thank you again.

  4. Thank you so much for your response.  It was very helpful as it allowed me to ask more informed questions at the appointment.  

    In all, appointment was unsettling.  We met with the medical oncologist first and he suggested low dose chemo combined with radiation, followed by immunotherapy with Durvalumab.  He was very excited and optimistic about Durvalumab, citing all sorts of statistics.  He said surgery wasn't an option as the cancer had spread into the central lymph nodes.  At the end of the appointment the surgeon came in and said he was recommending surgery as central node involvement was single station and he felt he could systematically clear out all of the nodes, as well as easily remove the mass by removing the middle lobe.  Immediately the medical oncologist said we should take the surgery option, that he didn't offer it because he didn't think it was doable, that this surgeon is very conservative so if he says he can do it he can.  His new plan was regular chemo followed by surgery and possibly radiation if anything small is found in the lymphs during the surgery.  No immunotherapy at this point.  To be considered later if the cancer returns.  

    We then met with the radiation oncologist.  His opinion was the hardest to decipher.  He said he would also go with the surgery over radiation although studies do not support that claim and in fact show there would be no benefit to surgery over radiation.  He said adding Durvalumab to the mix after chemo and surgery would be a no brainer even if there are still no studies to defend this claim and we should insist we get the Durvalumab.  He then said something like, surgeons here do not recommend chemo/radiation followed by surgery as surgeons here believe that this makes the surgery more difficult.  Additionally, the medical oncologist said, as soon as he walked into the room, I see you live close to Hopkins.  Will you be getting treated at Hopkins?  

    We got the impression that the medical oncologist was possibly recommending Hopkins over the current hospital and that the radiation oncologist was suggesting that we go somewhere that offers chemo/radiation prior to surgery.  Does any one have experience interpreting statements such as these?  Should we be reading between the lines  and seeing these statements as suggestions? 

    Finally, the medical oncologist said he wanted to test for a midline tumor.  Does anyone know why this might be?

    Thank you all again.



  5. Hello,

    I posted elsewhere on the site earlier in the month with questions regarding a mass that was incidentally found on my mother's ct scan.  Today we learned, after a mediastinoscopy and bronchoscopy, that the preliminary pathology report states NSCLC, squamous cell.  So far, we have only met with the surgeon, and expect to meet with the oncologist (and radiation oncologist if we request him) next week.  I have a number of questions and am sorry for the length.  I have read many posts here to try to find answers but find myself getting more and more confused with how much information is out there.  I'm just going to list my questions in no particular order.  If you have anything to offer, even just about one of the questions, I would love to hear it.

    1. I was told by our second opinion hospital that the tumor should be tested for a variety of mutations to facilitate best treatment.  However, the tumor was not biopsied--4 lymph nodes were removed for further pathology testing.  Can the cancer's mutations (if any-- I understand, I think, that these are unlikely with squamous cell?) be determined from samples of the lymph nodes or does the actual tumor need to be biopsied?

    2. An oncologist friend of a friend suggested I ask that a portion of the tumor be saved in case oncologists wanted to do any additional testing on it in the future.  However, both our first and second opinion hospitals want to do chemo before surgery (one wants to do chemo and radiation together before surgery).  Will there be anything left of the tumor to test if its is theoretically "killed" by the chemo and/or radiation?  Or, will this info come from the lymph nodes that were sampled today?

    3. I feel that I have read, either on this site or another, that lung cancer with mediastinal lymph node involvement makes it a stage 3b cancer.  However, the surgeon said repeatedly today that one of the mediastinal nodes are definitely involved and that it was stage 3a.  Can anyone clarify this for me or suggest what questions I might want to ask during the next appointment to get this clarified?  Can a lung cancer be 3a with mediastinal node involvement?  There is also a node in the hilum involved (I think that is the correct word) but this one is close to the tumor so apparently not as important.  

    4. Our first opinion hospital is suggesting chemo followed by surgery or radiation.  The surgeon said he will push for chemo followed by surgery as he thinks this offers a better prognosis given the limited local nature of the tumor and the fact that the nodes are not "bulky".  I asked the surgeon why he/the hospital don't recommend chemo/radiation together followed by surgery.  He said that he and the institution both agree that the morbidity rates of such a surgery following radiation are higher.  He said this is something that is often institutionally determined and varies by institution.  He said he will do it if that is what we want, but that isn't his first recommendation.  Our second opinion hospital says chemo/radiation first followed by surgery.  I know I have asked this question before, elsewhere on this forum, and I know I have received responses (thank you for that).  However, I am still not sure how to negotiate this decision.  I've read on various large cancer center sites etc that long term survival rates are better with chemo/radiation concurrently followed by surgery.  The 2nd opinion hospital stated right away that a lot of hospitals do not recommend this as they think it makes surgery more difficult.  This is exactly what her surgeon said (from 1st opinion hospital).  I cannot determine whether we should trust his opinion or whether he thinks this because he is working at an institution that does not follow this approach and hence he has less experience operating post radiation.  My list of thoughts and questions here goes on and on.  On the one hand we as a family (including my mother) are inclined towards a more aggressive approach and radiation (because she was cured of an aggressive breast cancer 13 years ago with surgery chemo and radiation).  On the other, it is hard to select an option with higher morbidity rates with so little information. 

    5.  I see that there are many, many possible therapies for lung cancer, depending on what is found on pathology.  I am concerned that the hospital will not test for the right things.  I have asked the general question and they say they test for all appropriate mutations.  Is that a sufficient answer or should I be more informed and ask about specific mutations (or other tests) that hospitals do not commonly test for that might be critical to my mom's care?  

    6.  I see many people on the site discussing drugs and treatments with so much expertise.  I am impressed and also overwhelmed by this as I feel that I am so far from knowledgable on the topic.  As a result, I fear that I may fail my mother by not knowing enough to ask the right questions, request the right drugs, etc. to give her the best care/outcome possible.  How can I learn about all of the newest options for someone with her cancer?  I have done and continue to do a lot of online research, but how does one ever know that they have found "everything"?  How can I know that I am not missing some major option that I should be asking for?

    7.  Are clinical trials something we should be looking into as soon as possible, or should be follow the recommended "standard" treatments first?  Her surgeon keeps repeating that this cancer is treatable and curable.  I assume implicit there is treatable and potentially curable.  Do we believe him or move quickly towards clinical trials since it is a stage 3 cancer?


    Thank you again.



  6. My mother hasn't been officially diagnosed (no biopsy yet) but our regional cancer center (well respected but not top notch) and Hopkins both agree it is likely a lung cancer with lymph node involvement.  The PET scan shows two involved nodes, one in the hilum and one in the mediastinum (forgive me for any mistakes here as I have no medical background).  

    The regional cancer center is advising a bronchoscopy and mediastinoscopy to biopsy the lymph nodes.  Hopkins agrees.

    If the node in the mediastinum is negative (despite activity on the PET scan) the regional center intends to continue with surgery and remove the mass, even if the node in the hilum is positive.  They recommend chemo afterwards.  Johns Hopkins, on the other hand, is advising a biopsy only if any nodes are involved.  They want to do chemo and radiation concurrently first (even though radiation makes surgery more difficult they feel this is the best protocol), followed by surgery.  Hopkins only wants to proceed with surgery first if there is no node involvement.  

    If the node in the mediastinum is positive, the regional center recommend no surgery and chemo followed by radiation or surgery.  The surgeon wants to follow chemo with surgery but said repeatedly that we might be advised to follow with radiation only.  Hopkins, on the other hand, wants to start with concurrent chemo/radiation and follow with surgery.

    I have no medical background and, though I can read studies, find it difficult to negotiate this decision.  To make it even more confusing, Hopkins did tell me that Sloan Kettering does not follow the same approach as Hopkins but moves forward as our regional cancer center advises, proceeding with surgery if the central node is negative, despite involvement of nodes in the hilum.  

    Does anyone have any thoughts or information on this decision?  Which suggestion should we follow?  Surgery is scheduled for Tuesday 11/27, and with the holidays and the weekend coming, the doesn't leave much time.  

    Thank you so much for your help.

  7. Hello all,

    My mother has a mass in her middle lobe.  Surgeon recommends no biopsy but moving straight to surgery, scheduled for 11/27.  He is fairly sure it is a lung cancer based on the CT.  I am trying to get a sense of whether we should feel comfortable with this surgeon's advice, or whether we should try to get a 2nd opinion at a major cancer center.  Hopkins happens to be 1 hour from my mom's house, but her last cancer (breast) was treated here and the outcome was exceptional.  How have you decided where to go for treatment?  How have you picked between a local/regional/not incredibly famous hospital and a major cancer center?  Did you go for a 2nd opinion prior to surgery or just prior to chemo/radiation?  

    Thank you.   

  8. Hello,

    Thank you for both responses.  

    The mass can be biopsied without difficulty.  He seems not to believe that the result of the biopsy would be informative.  He said, if the biopsy shows cancer he would remove the mass.  If the biopsy doesn't show cancer you still can't be sure it isn't cancer so he would likely recommend removing the mass anyways.  If upon remove it turns out to be an infection then he things removal wouldn't have been such a bad choice anyways since removal would clear the infection and 18 months of antibiotics would not be necessary.  She has not had a PET scan yet.  The only test she has had was a CT, just for reasons of previous breast cancer.  She has no symptoms.  

    Tom, yes, what you describe seems to be what he is describing.  I am wondering, if the central nodes have evidence of cancer, would a surgeon normally continue with the procedure and remove the mass or would a surgeon normally then opt not to remove the mass?  If typically the mass wouldn't be removed, why?   Also, Tom, if it is okay to ask, if your nodes where clear, why was the whole lung taken?  I am trying to get a sense of how surgeons determine how much they should remove vs how much lung to preserve.  

    Thank you again.

  9. Hello, 

    A CT scan revealed a 5cm mass and 9mm lymph node in my mom's right middle lobe.  My mom had triple negative breast cancer 13  years ago.  The thoracic surgeon has recommended removal of middle lobe with no biopsy.  His rational is: PET scan is informative but not 100%, esp as to lymph node involvement, if it turns out to be an infection then you'll have had a potentially unnecessary surgery but if it is cancer then you'll be glad you didn't waste any time.  He thinks it unlikely it is breast cancer mets.  

    Does this sound like  reasonable approach?  

    With lung cancer, is it best practice to remove as much of the lung as possible (as it is often with breast cancer) or usually just a lobe?  

    He is suggesting that he biopsy the central lymphs as first step of surgery.  Then it is unclear what he will do as I didn't quite understand him.  It sounded to me that if they are negative for involvement he would proceed with surgery but if they are positive then he would stop the surgery and we would go to a med onc to discuss radiation/chemo.  

    So, in addition to all of the above, I am wondering if best practices/research dictate that she should have surgery after central lymph involvement of not.

    It is so hard to even research this as we don't even know what we are dealing with as he is arguing for surgery first.


    Thank you for any thoughts on this.

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