Need advice quickly for first oncologist visit

[niels_boar]

My father had a biopsy several weeks ago that indicated that a small tumor in his left upper lung was adenocarcinoma.  The doctor initially believed it to be Stage I.  He had an invasive procedure this weekend that indicated that it had already spread into his lymph node and that two types of cancer cells were present. The diagnosis was moved up to Stage III.  I wasn't at the hospital when the doctors gave their report.  Hence, I don't know what the second type of cell is. My father prefers to take a passive role and is only interested in hearing what the doctors want him to do.  He's basically ignoring any diagnostic information.

I'm going with him to his first visit to the oncologist tomorrow (Halloween).  First, I was wondering if there were any suggestions of topics that the patient should raise at this point that might not be covered.  Secondly, I've read enough to know that some of the newer treatments are based testing the tumors for molecular and genetic markers.  My father is over 70, and I would like to avoid any more invasive procedures for diagnostic  purposes.  I have no idea how the genetic testing works.  Should I ask for testing now on the tissues that have been biopsied even if this testing is irrelevant to first-line treatments?  Are the tissues preserved so that they can be used for testing at a later date if warranted?  I would hate for him to have to endure another weekend like this one after undergoing chemo and radiation if all the necessary diagnostic information can be collected now. Thanks in advance for any advice.

[niels_boar]

Sorry, key bounce seems to have double posted this topic.  Could a moderator merge the threads.

[Tom Galli]

Niels,

First take a deep breath. Everything I know about biopsy tells me there is residual material from his first biopsy to determine if his adenocarcinoma will respond to targeted treatment. So your dad's doctor likely has enough raw material to genetically test his tumor. 

I'm answering on my cell phone and it is late. Tomorrow morning I'll expand my answer to suggest some questions for you to ask of your dad's doctor.  In particular, the diagnosis of two different "types" of lung cancer seems very unusual. (I may have misunderstood your reference to two types of cells). 

For a good list of questions to ask, go to www.lungevity.org and read the reference material in the Lung Cancer 101 section. 

I'll extend my answer tomorrow morning. Good that you are going with him. If it is any consultation, my wife did all the probing and questioning during my diagnosis and treatment. I was too afraid to pose questions. You might consider a similar role. 

Stay the course.

Tom

[Tom Galli]

Niels,

This extends my post of last night.  Here is the link for questions to ask medical staff during consultations.

Obviously the discovery of lymph node involvement is not good.  There is diagnostic technology that will confirm the presence and location of metastatic disease non-invasively.  It is called a PET scan.  Perhaps that might be the next diagnostic step because I think the doctors would want to confirm staging (Stage I or Stage III) before deciding on a treatment approach.  So you might want to inquire about a PET scan at the consultation.

I hoping the consultation yields a clear path forward in understand the extent of and treatment of you dad's lung cancer.

Stay the course.

Tom 

[niels_boar]

Thanks so much for the replies.

 I was apparently misinformed by a family member about the "two types of cells."  He has stage 3 adenocarcinoma according to the oncologist.  Today the oncologist recommended a six-week regimen of chemo (carboplatin and taxol) with radiation therapy.  My father was originally told in the hospital that a "head-to-toe" PET scan would be performed. However, the oncologist only mentioned a MRI scan of the brain today.  Should I ask for an explanation as to why the PET scan is not being scheduled?

I asked about targeted therapy and was told that it was limited to stage 4 at this point.  In my reading I haven't found any contradiction to that assertion, though I have read that some phase III trials are being performed where immunotherapy is being explored for stage 3.  I was wondering whether I should take my father for a second opinion on treatment.  World-renowned Emory University Hospital is not too far away.  However, based on my reading chemoradiation is fairly standard and the most aggressive approved treatment at this point.  Hence, I don't know if it would be worth the effort.  The surgery took a lot out of my father this weekend.  I don't know that he would too enthused about a day trip in a car to another doctor that is likely to give the same answer.

[Tom Galli]

Niels,

Normally, dare I use such a word with lung cancer, but normally a battery of diagnostic tests are done to stage lung cancer.  By staging, I mean determining if there are areas of distant metastasis.  In my case, I received a bone scan, brain scan and full chest and abdomen CT scan.  But my diagnosis was in 2004, well before the invention of PET technology.  Is a PET scan routinely performed in staging?  I don't know, but that would a question for his doctors.

Has surgery been ruled out?  That is another good question for the doctors.  If it has, then taxol and carboplatin chemotherapy with concurrent radiation is still a first line "standard of care" for lung cancer when surgery is not indicated.  In my case, I had it before surgery.  So, if surgery is ruled out, then Emory would offer the same treatment.

Targeted therapy and when it is administered is less clear cut.  Some targeted treatments have been elevated to a first line standard of care.  Some require a first line treatment failure and are administered on a second line basis.  This picture becomes clearer in your dad's case once the genetic testing of his adenocarcinoma is complete and if the discovered mutation shows susceptibility to a targeted treatment.  This determination should be made after his biopsy material is re-examined for genetic mutations.

So three questions for his doc: is a PET necessary, has surgery been ruled out, and if so, is my dad receiving the first line standard of care treatment?

Stay the course.

Tom