Why is there no discussion of progression or bad news?

[renij]

I have been trying to find information on the progression of NSCLC and all I find are really general statistics about the 5 year survival rates. 

I'm really looking for real life examples of how this disease progresses.  My dad was diagnosed with stage IV NSCLC over a year ago.  He's been getting chemo and we get very generic and often very cheery (in my opinion) explainations of the results of his CT scans from his oncologist.  

Oncologist: "Good news, the cancer hasn't grown or spread"   Me: "Has it shunk?"  Oncologist: "Well, no, but it's not gotten bigger or spread"

I don't know if that's good news or if he's just being pleasant - I really can't read him.  And my parents are kind of "head in the sand" people, so they just go with the flow, but I'd like to know what we are facing.

My dad isn't a learned man and he doesn't know how to use a computer to get information about his disease, and he's not really interested in researching it.  I've been trying to find information for myself, but all I see are the survival ("I beat cancer") stories or the grief stories after the fact.

Not everyone beats cancer.  For those who don't, what are the "signs" that we should be going on that family vacation or that we need to start looking into hospice.  I own a small business and need to be at work, I really can't have this crash on me, I need to make plans so that I can take care of myself as well as dad and mom.  When my dad goes, my mom probably can't live alone (she is prone to falling).  And because they "don't want to know", I will be left dealing with loss of dad and the uncomfortable task of telling mom she can't live alone.  If I just had a timeline I would feel more incontrol.  I understand that not everyone's journey is the same, but are there some signposts along the way?

For example, after 2 rounds of chemo, my dad's blood levels have been so bad that he couldn't get his next treatment.  Is that a sign that things are going downhill?  At this point where tumor shrinkage is stagnated, is that typical of someone who has 6months or 2 years left?  I don't feel like I can ask these questions at the visits with the oncologist because my parents truely don't want to know.  I feel like they have a right to stay in the dark if they want, and I don't want to ask questions that may sound like I am thinking only of myself.  However, I don't think I should have to feel guilty for caring about how this affects my life.

I'll be grateful for any information around this sensitive subject.

[Terribirdy]

Good questions - I can only tell you what has worked for me with my husband's treatment.  Unlike your parents, my husband wants to know what is going on -- however sometimes he doesn't know what questions to ask or remembers what to ask.  I'm there to get more information -- even when it isn't always pleasant.  One of the hard things to accept there isn't any easy answers.  I had to learn that they aren't being evasive, each person with cancer is different. If you want to be able to ask questions without your parents present, then make sure to find out what the docs and hospital require for authorization.  Once we got that form signed, I am able to log on to his healthcare web site, call to ask questions. 
As far as survival statistics and such, it depends on the type of lung cancer, the stage of the lung cancer, genetic markers of the individual, and other factors.   (Most of the test reports will say the type of stage of lung cancer of the patient).  For example, my husband as Non Small Cell Lung Cancer, Stage IV.   When he was diagnosed it had metastasized to his brain, liver, lymph nodes and spine, -- his lungs were filled with lesions, he had a 6 cm tumor in one lung, and fluid around his heart.  He had no symptoms, and rode 30-40 miles a day on his bike (he still does).  His internist told him he had months to live.  However, he referred us to a cancer research hospital where they did genetic testing of his tumor and he came back with a specific genetic marker that was treatable using targeted therapy using a pill.  The tumors shrank but after a few months some tumors showed up in his brain and liver.  Further tests showed that the genetics of the cancer had changed so he was enrolled in a clinical trial.  After some months that targeted therapy also stopped working so they switched him to another targeted therapy which is working.  However, it will stop working at some point and we'll have to see what to do next.  It isn't a cure and there is plenty of uncertainty.  Each day is a gift.  Hope you can find some answers. 

[renij]

Thank you for your insights Terribirdy.   My dad is stage IV Non Small Cell Lung also, but he doesn't seem to have the EGFR or ALK mutations.  When was your husband diagnosed?  You say "it isn't a cure", but my parents think that chemo is going to "cure" him.  In fact the radiation doctor actually told them that he had "killed" the cancer spot on his lung.  I wouldn't think they would use terminology like that knowing there is no cure.  I just can't bring myself to believe that my dad will be cured, but I can't tell him that.

[Tom Galli]

Renij,

Welcome here.  You are asking tough questions.  If you want the unadulterated, no fooling story on how difficult it is to eradicate lung cancer, then read this National Cancer Institute Study - http://jnci.oxfordjournals.org/content/107/6/djv059.full.pdf+html

As to how this disease progresses, here is mine: Stage IIIB NSC - Squamous cell - lung cancer diagnosis.  Four failed treatments in 3 years, then one worked.  After pre-surgical chemo and conventional radiation, I had surgery to remove my right lung in its entirety.  Then had surgical complications that took three more surgeries and a year to resolve.  In the meantime, cancer spread to my remaining lung.  I had 6 infusions of Taxol and Carboplatin but in six months, the tumors returned.  I had 6 more infusions of Taxol and Carboplatin hardened with the oral chemotherapy drug Tarceva, and again in six months, my tumor returned.  Then I had a successful CyberKnife (stereotactic radiation) that indeed "fried" my persistent tumor.  My treatment batting average was one-for-five.  If I were a position baseball player, I'd be headed to the minor leagues.  Lung cancer is persistent.

As for chemo delays due to uncooperative white and red blood cell counts, I've had too many to remember.  As to your reported oncologist descriptions of "hasn't grown or spread", I've heard that innumerable times.  Manifest uncertainty is the only certain and predictable thing about lung cancer treatment.  So, 12 years after diagnosis, I still dutifully attend my semi-annual oncology scan and consultation afraid to hear the words that my cancer has returned.

But, while the word "cure" is not one used in the lung cancer community, there is a state we call NED for no evidence of disease.  I've got a little bit more than 9 years of NED.  NED is a gift.  It is not guaranteed, nor permanent but it is something to take advantage of.  I believe, if one undergoes lung cancer treatment, then one is choosing extended life.  No one knows how long of an extension but what matters, again in my view, is what one does with the extended life.  I choose to enjoy myself despite my manifest uncertainty.

Some people do not want to know the details about treatment.  I completely understand why.  When in the throes of "its a little bigger, a little smaller, its spread", and scan after scan after scan I became overwhelmed by fear.  Although I knew the details, I sure didn't want to talk about them.  My wife did all the question and answers during these most uncertain times.  I stared at the clock watching the second hand move, wondering how many cancer cells were growing during the consultation session.  Reoccurrence evaporated my bravery and annihilated my inquisitive nature.

So, this is my input on what indeed is a sensitive subject.  As to your concern about asking frank questions of your dad's oncologist during his consultation, try this.  Ask for a moment alone with the doctor after he's finished with the consultations and ask your tough questions then.  Or, ask them here.

That is one of the reasons this forum exists.

Stay the course.

Tom

[renij]

Tom, Thank you for the  reply and the article (I haven't yet made it through, there's quite a lot of technical jargon to look up along the way)

If you don't mind my asking... What age were you diagnosed?  Were you a smoker? 

My dad is 72 and was a lifelong smoker - quit only after had to go on O2 at night - so his lungs were too badly damaged to do surgery to remove the cancer.  

  

[Tom Galli]

Renjj,

I was fifty-three at diagnosis and was a smoker. 

But, I'm still here!

Stay the course.

Tom

[Tania Andrade]

Thanks, Tom. You gave me hope today!

 

[renij]

Thanks Tom!  Dad had follow up with radiation dr today.  He told us that the cancer found in dad's spine was "dead"!  No growth in the last 6 months.  Dad feels good, but really tired and consitipated frrom chemo.  All in all, he's doing well.  Just wish he felt well enough to do something though....