Hello All/Possibly Lung Cancer

[David007]

Hello All,

I'm 56yrs old  smoked from age 18 till 35.

• Had cold or "crude" in Febuary  - i.e. Cough, some chills.
• May 1st - Cough continued - Went to Doctor - Gave me antibiotics/took X-ray
• May 9th - Dr called and ask me to come in and discuss X-Ray
  • Said X-ray should Right Hilar Mass
  • Asked if I've been exposed to bat or bird droppings  (No)
  • Changed antibiotic and order CT
• May 28 - CT Scan showed right hilar mass 4.5cm
  • Referred to Pulmonary Dr.
  • Changed antibiotic
  • Cough is aggravating
• June 25 - Another CT Scan
  • No change
  • Different antibiotic
  • Cough is getting worse, especially at night and morning
• July 12 - Pulmonary Doc Visit
  • Referred to Surgeon for IBUS
  • prescribed TussinDM for cough
• August 17 - IBUS
• August 26 - Follow-up with surgeon
  • Biopsy inconclusive - Something about needle not being long enough
  • Doctor stated based on characteristics he is afraid it is cancer
  • Referred for CT Biopsy
  • Nurse commented I've lost 14 pounds since May
• August 31 - Met with Radiologist/Surgeon
  • Surgery scheduled for Sept 10th
  • Ask about his opinion of the many Ct Scans and reports.  Said diagnosis can only be made from a biopsy but he agrees with the IBUS surgeon.
• Today Sept 10th
  • Cough is much worse
  • Hard to work, go out in public, church, etc
  • Doctors dont seem to want to treat the cough.
  • Cough meds include Benzonate and Siltussin DM - Little effect

Sorry so long but thought a timeline would be good.    Should I have been further along than this?  Any cough remedies

Not sure how I'm supposed to feel

 

 

 

•  

[Steff]

Hi David,

It sounds like you've had quite the journey so far.  A suggestion for your cough is Tessalon Perles - prescription cough meds.  It worked well for my mom when she was coughing non-stop due to her tracheal stent.  Have your docs given you a reason for your cough?  Is it due to the mass?  

You asked if you should be further along than you are.  I can't answer that.  It sounds like you are going through the steps recommended by your docs, but I would be frustrated too if you have been coughing this long with no help and no answers.  Getting to an actual lung cancer diagnoses (or not) takes a long time and your journey is lengthened due to the inconclusive biopsy procedure.  I would have hoped that your pulmonologist would have been more on top of your chronic cough.  What type of surgery are you having on September 10th? -the CT biopsy?  Have you had a PET scan yet?  

Ultimately, my best suggestion besides the cough meds is that if you are uncomfortable or unhappy with the care of your physicians, I would look for a new doc.  This is not an easy journey and it just makes it that much harder when you have unsupportive and unhelpful docs.

Take Care,

Steff

[BridgetO]

Hi David,

It souunds like surgery is the only way to know for sure what's going on. My nodule was small and I had no symptoms, but it couldn't be biopsied without surgery due to it's location. will your surgery be by VATS?  Seems like your doctors are treating the cough but the treatment isn't working. A few weeks after my surgery I had a nasty case of bronchitis and benzonatate was pretty effective. Your mass, whether cancer or not, is probably causing this nasty cough and hopefully it will stop once the mass is out,  

Bridget O

 

[David007]

Thanks for the responses.  I'm just on pins and needles.

I'm assuming cough is due to the mass but not really sure.  Going on 5 months with the cough now.

 

[LexieCat]

Hi, David,

I've never heard the term IBUS.  Do you mean EBUS?  As in this: https://health.ucsd.edu/specialties/pulmonary/procedures/Pages/endobronchial.aspx ?

I'm not clear on what type of surgery you are having.  Is it for a biopsy or for a lobectomy?

I'm surprised you haven't had a PET/CT scan.  That can sometimes provide a clue as to whether a nodule/mass is cancerous, and it's also useful for finding out whether there's been any spread.  If there has been any spread of cancer, the treatment is usually chemo or radiation, sometimes with surgery down the line (if feasible).

Welcome, glad you found us.  The waiting around for tests and results is definitely one of the hardest things about this whole deal.

 

 

[David007]

Sorry, yes its EBUS.  Monday, I'm having a CT guided biopsy.

 

[LexieCat]

Good luck with the biopsy!  Once you know what it is you're dealing with, things should move along much faster.

[Evangeline]

David:

You do not mention where you are being evaluated.  Please consider going to a "specialty" cancer treatment center if you have not done so already.  Although, I do not know much about Mississippi, there appear to be many such centers in your state.  If time & finances allow, you might consider MD Anderson in Houston, Texas.

Please do not let this linger.  Best of luck to you! 

[Tom Galli]

David,

Welcome here. Sorry your diagnosis process has proceeded at a craw. I do know what it is like to wait and cough. 

Glad you found us. Hope your biopsy goes smoothly and results in a definitive answer. 

In my long treatment journey, I had many bouts of coughing. I know how unpleasant the sensation is. Press your doctors for more powerful cough suppressant medication. 

Stay the course. 

Tom

[David007]

Thanks for the replies.  Evangeline,   Am actually going to Keesler AFB for the Biopsy.

Will get back with the results next week!!  Thanks Again everyone!

[David007]

Hello All,

CT Guided Biopsy performed on the 10th of September - No problems at all

Discussed results with Radiology DR on the 19th

• No cancer
• No infection
• Coulture not back yet.

Wants to do another cat scan and consider Video Assisted Surgery for biopsy if recommended by "Chest Board"

Said he may have not "hit the right spot"

Concerned because the PET shows hot spot, a number and something about white and red blood cells

Told me to take this as good news but they will continue test

But....Am still, after 6 months coughing excessively.  Had to a coughing fit at church and had to leave.  Really bothered me.

 The process is wearing me out physically and mentally.  Wife is a nervous wreck (1st husband died of cancer at 52.  Shes only 43 and I'm 56) She is quickly losing faith in the VA and AFB Hospital.  Kinda of stuck because I don;t have health insurance.

 I have lost weight - 18 pounds since May.  Wife making sure I eat 3 good meals a day and a protein drink.  Have gained back 5.

Other than being tired and ready for bed at 730, and the frequent coughing I'm feel ok.

I appreciate you guys!  Don't really have anyone other than wife to share this with.

A million thanks!

 

[Tom Galli]

David,

When I catch the crud, I use Mucinex to turn non productive coughing into productive coughing.  I also turn the shower on its highest temperature, aim the stream to a wall and sit in the shower soaking up stream.  Depending on crud intensity, I do this 3 times a day and it works, along with Mucinex.

Weight gain is a very good sign.  Wouldn't suspect one would gain 5 pounds with metastatic cancer.

What was the PET SUV hot spot number?  Normally SUVs of 2 or less are not viewed as metastatic.  Above 2 is suspicious, but my most recent PET, performed in August showed an SUV of 3.5 in the location of my thoracotomy incision scars.  I had three surgeries that used this incision site and I experience chronic pain as a result.  The radiologist suggests this area is "strongly favored to be inflammation."  Where was your PET return located?  If along your trachea or in or near your bronchus areas, it might be inflammation due to your intense coughing.

Was your PET scan a combination PET/CT.  Most are these days.  If so, what did the CT portion of the test report show for the size of your right hilar mass compared to the 4.5cm reported in May.  The hilar mass from its location could be the root cause of your coughing but it may not be cancer.  A mass in that area would irritate your bronchus.

Interested in learning what VA chest board reports.

Stay the course.

Tom