Newly diagnosed with non small cell adenocarcinom

[jquilts]

Hello, I am a 61 year old woman, never smoked, always very physcially active that got very sick and ended up in the hospital from February 23rd to March 3rd with necrotizing pneumonia. The x-ray showed the bacterial infection and of course a large mass. Over a week in the hospital on heavy duty antibiotics and lots of testing, a CT assisted needle biopsy showed I had non-small cell adenocarcinoma. The biopsy sample was too small to stage it. I have had a Pulmonary Function test (don't know results yet). Couldn't have the originally scheduled PET scan because insurance had not approve it and am hoping they will approve the PET scan appointment next week. The oncologist seems to think my first step will be surgical removal of the mass. Right now I feel I am in the 'netherland' waiting to even find out how bad off I really am. While most days since the diagnosis I can remain postive and optimistic, but nights I start going to dark thinking. Today has been pretty depressing. How do you keep your spirits up when you don't even know how bad off you are?

[Donna G]

jquilts I am glad they did the biopsy and you have seen an Oncologist.   I am sure you are in shock.

 

Do you have family their in Arizona with you?  I hope so or at least some good friends.

I am sure you will need someone to be with you on this journey.

You really do need that PET scan to be sure it as not spread anywhere.

Then if not I hope you are well enough to get that surgery soon.  Did they do any genetic testing?

 

Please keep us posted on how you are doing and what the plan will be.

 

Donna G

[Tom Galli]

Jquils,

 

In truth, my spirits on learning of my diagnosis were right where yours are - "dark thinking."  My diagnosis was in 2004 and before the blossoming of online cancer sites like this one.  So, I toughed it out for about 2 1/2 years before I found an online cancer community and realized others were going through diagnostic and treatment uncertainty with dark thoughts.  You are not alone. 

 

Donna and I have a combined 22 years of surviving late stage lung cancer. If we can live, so can you.

 

"Netherland" is a good term by the way.  Uncertain waiting will be a common experience for you.  Here are some things you can do while waiting for the battery of tests and results in your immediate future.  Read into lung cancer here: http://www.lungevity.org/about-lung-cancer/lung-cancer-101

 

I'd start with the section on Diagnosing, then read about types - yours is adenocarcinoma -  and lastly stage.  Your positron emission tomography (PET) scan should stage your cancer.  Once staged, your doctor can design a treatment plan.  

 

You've had your first brush with insurance.  Get ready for more.  Matching up all of the test, physician and radiology invoices, with copays and insurance adjustments will quickly get complicated.  Use some of your waiting time to get organized.  If you are computer savvy, start a spreadsheet.   If you don't know how to run a spreadsheet, then just run a ruler lined columns down a page.  Be religious about recording invoices as they come in and file them (I'd use a file for each provider) .  When insurance pays, annotate the amount paid against each provider, and file the insurance paperwork.  I'd write the insurance settlement on each provider invoice because you will get duplicate bills.

 

You'll have many questions and we can suggest answers.  We are not doctors, but we've been down the same diagnostic - treatment trail that you are now on.  

 

Stay the course.

 

Tom 

[jquilts]

Thanks Tom and Donna for your responses. It is difficult adjusting to the diagnosis. I believe I am healthy enough for surgery. Before I got pneumonia I would do cardio, yoga, weights at the gym a couple times a week, walk a lot and go to the Rock Climbing gym 2x/wk. I am counting on that to help carry me through the process. I do have a very supportive husband and a few friends and lots of acquaintences to help provide emotional support. My siblings are all out of state, but my sisters would fly in at the drop of a hat, if I asked. I don't want to be 'Downer Debbie' for my support group, so hope I move past this depression stage soon. I am not used to being this depressed as I am usually a very upbeat, positive person. I feel I will fall apart if the insurance has still not approved the PET scan by its scheduled day next Wednesday. I can't help thinking every day of delay could be the day the cancer spreads (assuming it hasn't already). Since the oncologist really thinks the first step is surgery, I really want that parastie out of my body. They haven't genetically tested it, perhaps this could be done after they remove it? The oncologist didn't think medicine was at the stage for lung cancer where they could genetically test the tumor and form a treatment plan for that specific genetic type. Do I need to look for a different oncologist? I am glad to know there are late stage survivors out there. It does give me hope...especially because you guys do look healthy.

[Tom Galli]

Jquilts,

 

If your tumor is in situ (has not affected other portions of your body), and if no or few regional lymph nodes are affected (the PET will show this); then surgery is the best curative treatment.  Generally, surgery is not an option if your disease is stage IV - spread to other parts of the body.  

 

If your oncologist refers to a thoracic surgeon and if the tumor is surgically removed, it could be tested for adenocarcinoma cancer cell genetic mutations.  I believe tumors are kept as laboratory samples for quite some time after surgery.  Ask your thoracic surgeon (if and when you get one) if this is so.  If so, then testing for cancer cell genetic mutations can be put off.  It may never be needed.  If the surgery removes all the cancer and post-surgical chemo kills any and all cells, then your treatment would be over.

 

From what you say, it appears your oncologist is calling all the right shots.  Your type is determined and the PET should reveal your stage.  Then a surgical determination or a treatment plan will be designed.

 

Stay the course.

 

Tom

[jquilts]

Thanks, Tom. I have talked to the office of the thoracic surgeon. They don't want to schedule an appointment until I get the results from the Pulmonary tests and the PET scan is complete. If it does go to surgery, I will be sure to ask about the genetic testing of the tumor...and treatments based on the genetic typing. I'm remaining hopeful it hasn't spread, because all through the hospital stay with the pneumonia, all the doctors, including the oncologist, comment how odd, strange, weird, different, 'never seen anything like it', etc, my mass is when viewed on X-ray and CT imaging. The oncologist even comments that the tumor may not even be as big as it appears, that it is just odd. The bronchoscopy they did in the hospital was very clean, nothing grew, no malignancy cells seen (although they did say that really didn't mean much).

Thanks for being there. It helps me alot....especially knowing you are at 12 years survival this year!

Jan

[MaryTD777]

Hi Jan,

How are you doing? Have you had your scan yet? Made a treatment plan? Genetic testing has become Amazing!! I see people all the time getting awesome results by having specialized treatment based on the genetics of the tumor!! I would imagine they will do that so you know what it was in case it ever comes back years down the road. Please let us know how you are and how you are managing your depression as well.

God Bless,

Mary