Dad just Dx with Adenocarcinoma

[AndyT]

Hello all....unfortunately I find a need to join you all. I'm trying to do some fast-track research today.

My Dad and best friend got the call yesterday, they found Adenocarcinoma in the linings of the left lung. We are assuming it is Stage IV. Dad just turned 63 and he is in relatively good health (could lose 5 - 10 pounds and get more exercise). History to date:

9/07 Getting shortness of breath and some minor wieght loss, then mid October fatigue and bronchitis set in and doesn't seem to go away.

11/12 - chest xrays show fluid around collapsed left lung.

11/13 - CT scan shows several "pea sized nodules" on right lung possible small leason on the spine (pulmonolgist can't see it), nothing about collapsed lung.

11/14 - family Dr & Pulmonolgist tell Mom & Dad it's most likely cancer.

11/15 - Drained 2 liters from chest, fluid tests come back 11/21- inconclusive for cancer.

11/26 - Bronchoscopy, no masses seen in either lung (nodules in RL are too far down to reach). They take samples of LL linings and lymph node.

11/28 - Test results back, LL lining + for Adeno.; nodes show inflammation with some atypical cells.

11/29 - Doing needle biopsy of nodules on RL, trying to confirm if lung is primary as largest nodule is pea-sized.

Tomorrow 1st Onc appointment.

Sorry for the long history, trying to get some questions together that Dad start asking?

Thanks,

Andy

[Patkid]

I have no advice for ???s but want to send a big hug and many prayers for your family.

You are a good son and a blessing to your dad.

Hugs

Pat

[atlanta1]

Hello Andy - I'm sorry you have a reason to be here - I am new to this forum myself. My father was recently diagnosed with non small cell adenocarcinoma. You'll find a wealth of support here I guarantee it. You are smart to think about questions to ask. I have a word document that we just add to for each doctor visit - if you want to sent me a personal message I'd be glad to email it to you - each case is different but this would give you a starting point. This is overwhelming I know.

I wish you and your family the best and will include you in my prayers.

[AndyT]

That would be great. PM sent.

I'm reeading as much as I can, but the info out there is so negative it's tough to stay hopeful.

We thank you very much.

Prayers go out to you and yours!

[MsC1210]

Hello Andy and Welcome.

I am sorry you had any need to find a group like this but you sure came to the right place!

A couple of words of advice... Get a small notebook or planner and write EVERYTHING down, your questions for the doctors, treatment information, schedules, etc. Get copies of ALL the test results to have for second opinions, reference etc. Do not hesitate to get a second, third or even more opinions if you are not happy, comfortable or satisfied with the doctors.

Keep us posted here and never hesitate to let us know how we can help you and your Dad..

Warmly

Christine

[Ry]

Welcome to the board-- sorry you have a need to join us. Ignore the negative things you read, there are many new drugs holding people stable a long time. Keep us informed on how things go.

Rochelle

[Patti B]

Andy-

Sorrty you have to be here but you have come to a great place with great people.

I keep what I call a "cancer bible" with notes about everything I talk to the doctor about, I keep copies of all my scans and MRIS in there and I even have the chemo nurses write down what chemos I am given each visit. And, I keep a list of all my other meds like my BP meds written in there. I find this helpful because with my husband being away all week, should I get sick, my son or whoever can just give the book to the doctors and they will know everyhting. I even took it on vacation with me last summer because I knew if something had happened my husband might not be familiar with all the names of the chemos, etc.

Sending you prayers and hugs.

Patti B.

[Adrian]

Welcome,

sorry you have to be here.

Certainly agree with the "bring a pen" advice.

If the lesion on the spine is cancerous, that would be stage IV. Sounds like your dad has not had a PET/CT or Bone scan yet. The bone scan (and a PET) will give the Doc a better idea if that lesion on the spine is in fact a met. If it is, unfortunately that would put the (assumed) lung cancer at stage 4. The spine met could be radiated if it causes discomfort, but the stage IV situation would not change.

It is also possible that the lesion is scarring or something else entriely, in which case based on the lack of cancer in the pleural fluid and the appraent lack of cancer spread, your dad could be staged lower.

Though we are hoping for a lower staging---hopefully one that permits surgery---if it turns out stage IV, all is not lost. There are many people who have been ticking on for quite a while despite stage IV.

Keep us posted

[bunny]

you've gotten great advice already, but I wanted to chime in. read as much as you can/want to, but make sure you ignore the prognoses alot of the literature gives. also, I'm not sure why you're 'assuming satge IV', but never lose hope. mom is stage III3b, and cancer free 7 years after diagnosis. not without alot of difficult treatment, but cancer free and living her life. bring a pen. don't be afraid to call after the appointment if there are questions you forgot. we found it very helpful to make friends with the head nurse in mom's onc.'s office. it's hard to get the doc on the phone but the nurse always takes our calls and has answers for us.

hang in there, and best to all of you.

xo

amie

[AndyT]

Thank you all for your kind thoughts & advice.

Drs drained 2 more liters from Dad yesterday. They saw nodules on the LL, so they took the biopsies from there instead of the RL.

Dad's first Onc appointment is today and we have a list of questions and 2 people taking notes.

bunny - We thought Stage IV as both lungs and spine involved. Hope we assumed wrong! You are right with the prognosis, they've put me into a tailspin more than once over the last 2 weeks.

Thanks for all your kind words and positive stories in other posts.

Andy

[mommadukes101]

Hi Andy,

I have been a member here for about a month now, my husband was diagnosed with NSCLC adenocarcinoma Stage III a or b or whatever.......I decided not to get TOO focused on the staging, it helps to know where you stand but your Dad and my husband are individuals with their own fighting spirits and their walk through this will be unique. Everyone here is wonderfully helpful and supportive. Welcome.

[fillise]

Andy--Pay NO attention to the prognosis! Everyone is different and we have many people on this board that have done far better than the statistics suggested they would. I'm glad you've got people to listen and take notes at the dr visits. It's also ok to ask for written information on test results and Dx.

Best of luck to your father. Let us know how he does and feel free to ask any questions you might have.

Susan

[Suzie Q]

Andy, your dad is NOT a statistic! So do not dwell on the prognosis. Hope you get a game plan in place soon so you can all go to battle stations!

~Karen

[AndyT]

UPDATE: It's been a crazy 9 days since I last posted,

Friday 11/30, 1st onc appointment; Dr terrified Mom & dad with comments like "you look better in person than on paper" and "if you weren't in such good shape, I might not give you to Christmas". I think he was trying to compliment him, but came out way wrong. Based on the CT scans the lung cancer too spread out so its probably secondary, not primary location. He believes primary is lower in the abdomen. I'm hoping for colon, parents scared it's pancreatic. Dr orders PET on 12/5, schedule next appt 12/7....chemo to start 12/10.

12/5 - PET scan AM, PM dad suffers from extreme SOB and sharp pains in leg and right side. Rush to ER, turns out small clot in leg and sent small clot to right lung..left side effusion AGAIN. Start in IV blood thinnners, to stay in hospital till 12/8.

12/6 - One of the parner of their Onc. practice stops in. She is great, parents ask if she'll take over their case due to "personality conflict". She agrees, PET scan results lung primary (again), mets to T11, right ribs, 2 on hips, 1 shoulder...no organ mets. Primary left lung 6x4.4 cm (SUV 7.1). Multiple lesions to left, longest 3cm. Numerous tiny nodules on right lung but none light up (seems wierd to me). Chemo to start on 12/8...4 week cycle.

12/7 - Plan changed to 3 week w/ Cisplatin/gemzar. No symptoms of brain mets, they order CT "just to be safe".

12/8 - 3 Brain mets found! Largest 2.5 cm, smallest no measure or location. Dad is crushed!!! Chemo is off...10 days of WBR to start on 12/10. Dad will not leave hospital until sometime after WBR starts. Afternoon dad gets fever of 103, they have no idea why.

This has been crazy every time we get a plan to start the battle, something changes it. Just frustrated! Thanks for letting me vent.

[RandyW]

click on the profile button on top of page and open window Copy and paste all med info into the big box in middle og page and you will not have to repeat just add to the list after each visit. YOu can also contact Lance armstrong foundation for FREE note book for drs visits.

DOn't listen to Drs prognosis just statistical numbers is all Everyone here has outlived that number by a LONG SHOT!!!!!

If you do not like the Doctor get a new one. The doctor is not the only one in the world who knows anything about Lung cancer. WE HAVE OUR OWN PARENTS AND DOCTORS HAVE LOTS OF PATIENTS. ADVOCATE for Mom and Dad!!!!!!!!!!

[AndyT]

Thanks Randy. His new Dr seems much more positive, she didn't give any time frames and we didn't ask. She only said that she can't cure it now, but people can survive for 5 and even 10 years. By then you never know what new developments may have happened.

I haven't talked with her since the brain mets were found, but would be shocked if she turned negative on that.

[recce101]

Andy:

Congrats on getting an onc who is positive -- THAT'S A BIGGIE!!

Although brain mets "sound" really bad, they're often easier to handle than the cancer sites elsewhere. Most people have a good bit of fatigue from WBR, so don't be surprised and overly concerned if and when that happens. But once the WBR is finished, there's a good chance there won't be any further brain involvement.

If you haven't already, please visit onctalk.com. There's a wealth of information there, primarily on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and use the same usernames there as here.

My very best to you and your dad with Aloha,

Ned

[AndyT]

Just got back from the hospital, Dad's fever broke over night. He actually looked and sounded better than he has in a week or two. His warped sense of humor has returned....making jokes about being the Incredible Hulk because of steriods & radation. So good to hear him laughing again!

The oncologist met with us and said she hopes this will only delay chemo a week or 2. She thinks dad should come home Monday or Tuesday.

I've been visting Dr. West's site, just haven't registered yet.

[Patkid]

Oh, Andy,

What a difficult couple of weeks for you and your folks.

Glad your dad is able to joke.............that really helps!

It sounds to me like the ducks are lining up ~ once they are all in a row the plan will be in place and then it is a bit less stressful to just follow the plan.

I will continue to hold your family in prayer.

Best.

P

[fillise]

ANdy--Welcome and sorry it has been such a rough go (although nothing about LC is easy). I'm glad your perents switched doctors. New onc. sounds much more positive and like she will help him fight.

Susan