Another mountain to climb

[Guest guest]

Hi everyone:

I haven’t posted for a while, but I read every day.  I wanted to

bring you up to date on what I am dealing with now.

In April my doc at Duke (on) found a “spot†on my lung. 

At time, he told me to have another CT scan in 3 months because it was so small. 

So in July, the CT scan had showed this “nodule†had grown a little. Doc told

me that tumor growth in pts with ILD is not uncommon and he gradually lowered

my Cellcept dose and my prednisone.  I noticed more shortness of breath but he

felt it was necessary because of the immunosuppressants. 

 I was scheduled for a PET scan a week later which showed the probability

of the tumor being cancerous and some enlarged lymph nodes.  Then I was

scheduled for a bronchoscopy with ultrasound to take washings from the lymph

node and the nodule.  They came back negative for cancer.  A couple of weeks

later (now into Sept),  I saw a thoracic cancer surgeon at Duke (D’Amico, who

may be the best at what he does, but has absolutely no patient skills—but that’s

another story).  He told me a 90% chance the tumor was cancer, but told me I

wouldn’t make it through surgery with my lung situation. Told me to go back to

pulm. Rehab and lose weight (didn’t say how much).  So I went to pulm rehab 4

times a week and lost 9 lbs (still on low dose prednisone) over the next 6 wks. 

I saw him on Thursday, after having another CT scan and PFT’s.  He told me he

could not operate on me and if I survived the surgery, my quality of life may

be even more compromised.  Referred me to a radiation oncologist.

Fortunately, all these specialties are in the same clinic, and about

15 min. later the radiation oncology resident came in and then the attending

came in.  They told me that first we had to be sure it is cancer and a needle

bx would have to be scheduled (local anesthesia).  That would show what kind of

cancer it is.  They felt it was something that could be treated in 3-4 treatments

with a very high dose, very focused radiation.  Two treatments one week and one

the next.   Since I live in VA, the Medical College of Virginia in Richmond (only

about 60 miles away) has a highly rated cancer center and I could probably go

there to .  So I decided I will have the bx done at Duke by the same surgeon

who did the bronchoscopy and depending on results I will be referred to MCV for

the radiation.  I am waiting now for the appt for the needle bx.

I feel like this is just one more thing to add on top of the

other and wonder how much more I can take.  Maybe it’s best that the surgery

option has been taken off the table for me and we go now to radiation.  I doubt

I will do any chemo because nothing, absolutely nothing, will change the

underlying disease and we all know what the eventual outcome is.    In my

earlier years, I couldn’t imagine anything worse than to have lung cancer, but

you know what—there is something worse so the word “cancer†doesn’t scare me

nearly as much.

Sorry I have rambled on, but I know you guys would understand.

Sue D.

63 yr old,  Fibrotic NSIP dx 9/07,  ? lung ca, VA