Seems like Mom's Dr is moving too slow. LC Recurrence

[joseph2]

Mom had 1/2 of one lung recected 1.5 years ago and has been getting scans every few months.  Her latest scan says the following:

"Evaluation of the lung windows demonstrates the patient to be status post RIGHT upper lobectomy. The central airways are patent. There are increased multiple RIGHT lower lobe nodules. For example, subpleural RIGHT lower lobe nodule on series 4 image 44 measures 11 mm, previously 9 mm. RIGHT lower lobe nodule on series 4 image 38 measures 12 mm, previously 9 mm. Subpleural nodule on series 4 image 34 measures 15 mm, previously 6 mm. Several new pulmonary nodules are present, including 13 mm RIGHT lower lobe nodule on series 4 image 47. There is no parenohymal consolidation. No pneumothorax. No aggressive osseous lesions. "

This is reflecting a change of 3 months of growth.  From what I was reading, a growth of 7mm to 9mm (2mm growth) is a doubling of volume.  

She is positive for EGFR and in her early 80s.  She doesn't want to do any further aggressive treatment (chemo/radiation or surgery), but her oncologist NOT recommending starting any of the EGFR treatments and is fine with her waiting until mid May (6 months from now) to do another scan...  

Am I the only one that thinks this is a bit crazy??

[Tom Galli]

Joseph,

From what you wrote, your mother likely has a recurrence of lung cancer.  Even 15 mm is small, less than 1/2", not inconsequential but small.  Here is information on Targeted Therapy for EGFR positive tumors.  Some of these drugs are pretty potent in terms of side effects and maybe that fact and your mother's age are what is driving the oncologist recommendation.  Is this the first scan (you mentioned she'd been getting scans every few months) that shows increasing nodules?  

Of course, you mother's wishes in terms of now wanting further aggressive treatment are likely what is driving the doctor's approach.  I'm not sure I helped you much.  I don't know how much your mother's wishes is driving the doctor's treatment plan.  It is a good question for the doctor.

Stay the course.

Tom

[joseph2]

Thank you Tom,

It's definitely a recurrence of LC.  What concerns me is the rate of growth with lack of any action... and now waiting 6 months before the next scan when we know we have tumors doubling in size and popping up all over the lung (at least not spreading outside this as far as we know).

We are familiar with the EGFR treatments, but I thank you for the link... One more site to read won't hurt.  You are correct that she does not really want to impact her quality of life... but one of the drug's side effects are fairly mild... and she could always stop if they got bad...

I didn't want to ask the doctor what this meant on life expectancy or when we could expect Mom to be more symptomatic than she is (she has had a horrible persistent cough since before the surgery 1.5 years ago).  

Mom is planning on taking us all on an African safari in June (which I have no idea how she will be able to do... especially since it's a 14 hour flight)...  I mentioned this to the doctor and she didn't seem to think it was going to be a problem (delusional?).

Anyway, I welcome input from anyone with similar situation.  Thank you again.

[Tom Galli]

Jospeh,

Ok you've disclosed a few more elements of information that help me understand.

First my belief --philosophy -- of cancer treatment.  It often results in extra life.  How long, we don't know.  It sounds like your mom has benefited 1.5 years of extra life already from previous treatment. She sounds better off than me because I still have coughing bouts nearly 13 years after surgery.  I have other problems also but when I stack those problems up, they don't top the benefits of extra life to me.  I'm only 66.  Your mom is in her 80s.  What is tolerable for me may be intolerable for her.  Maybe that sheds light on your mom's reluctance to pursue additional treatment.  I would avoid the topic of life expectancy.  It is not the length of time remaining that is important to cancer patients, it is the joy they can experience while living each day.  Your mom appears to favor joy over length.  I do also.  I doubt your doctor could be very precise in defining when lung cancer symptoms will start to interrupt life activities.  Symptoms and affects vary so much from person to person.

I think the African safari is a grand idea.  One caution, however, those that have thoracic surgery often are uncomfortable on long flights because of cabin pressure altitude.  At a cabin pressure altitude of 6,000 feet, one's chest expands against the lower pressure, and this expansion causes me pain in the area of my incision scars.  This symptom is pretty typical.  Ensure your mom consults with a doctor on techniques to address this symptom.  I take pain medication before a long airline trip and plan a down day to recover the first day after a long flight.  So it is a manageable problem.  Depending on the type of surgery your mother had, it may be a non problem.

So here is a strategy.  Ask your mother what's next after Africa.  Get her involved in planning the next great adventure.  

Stay the course.

Tom

[joseph2]

Thank you Tom.  All your points are well taken.  Especially those regarding air travel.  She seemed ok when we went to London last June... but it definitely took a lot out of her.

She has had this horrible cough since before the first surgery, but it's definitely worse now.  She takes a couple inhalers, but they don't seem to do much.  What have you done to help with the coughing?

Thanks again.

 

[Tom Galli]

Joseph,

Unfortunately, all my surgeries have caused what my doctors call a reactive airway. During periods of high poor air quality, I cough.  In the pollen season, I cough.  And, of course, every cold goes right to my chest and I cough a lot.  I use inhalers also but during periods of poor air quality and pollen, I take my daily inhaler while I'm in a steaming shower. I also follow the instructions for using my inhaler in terms of completely emptying my lung and hold my breath after I inhale the medication.  While in the shower, I breathe deeply and the inhaler medication and steam breaks up my congestion and then eases it throughout the day.  But, some days, I need a couple of steamed showers. This technique only applies to congestion in the airway or lung.   If you mother has a dry, non productive cough, inhalers and steam may not work.

If that is the case, I suggest she consult with a pulmonary medicine doctor or pulmonologist. There are treatments that the pulmonologist may prescribe that are more suited to a dry - irritated cough symptom.

Stay the course.

Tom