I was told I got LC stage 3A and desperately need your help

testrider
  • By testrider · January 5, 2013 at 10:06 am · 185 replies
  • In Non-small cell lung cancer - Stage III
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Hi all,

I found this web site and group after receiving my own news yesterday. I desperately need any and all the helps and supports you can give. I thank you in advance from the bottom of my heart.

My name is Mike. I'm 57 years old male. Before Xmas, I got a cold and cough. I went to my family doctor and he saw some inflammation in my throat so he gave me some antibiotics. When I was there, he gave me a chest xray and saw a mass, so he sent me to do a CATSCAN. After the result came back, he said he saw a tumor.

The result said (I'm not 100% sure what all these meant):

"Findings: examination confirms the presence of a 4.9 x 6.3 x 4.9 cm spiculated mass in the right hilum. Highly suggestive of neoplastic process. There is encasement of the right lower lobe bronchus. MInimal RIGHT lower lobe atelectasis is seen. No significant mediastinal or hilar lymphadenophaty is seen. No pleural fluid effusion. Vascular and cardiac structures are normal. Bony structures are unremarkable"

My family doctor then sent me to see a pulmonary MD and he did a bronchoscopy for me and took some biopsy sample.

Yesterday, the pulmonary doctor called me and told me that it's lung cancer and it's stage 3A. He said that my tumor is too close to the center line and he doesn't think surgery is possible, but again he said he is not the surgeon, so he's referring me to see a surgeon next week to see if any surgery can be done. Then I will see an oncologist for treatment.

Needless to say, I was shocked, devastated, depressed, sad all at the same time. So I tried to find out more about stage 3A that I found this web site. After reading the posts here, I figure all is not lost and I was comforted by the supports I saw that were given to each other in a very difficult time.

I desperately need any or all advises, comments that you can give. I'd appreciate it all from my heart.

- I have Kaiser insurance in Southern California, do they have good cancer treatment program?

- I have absolutely no symptoms. Will a stage 3A deteriorate pretty fast?

- What questions should I ask when I see the surgeon next week?

- what questions should I ask when I see the oncologist next week?

So far, I know nothing about lung cancer and treatments, beside reading the posts here in this 'NSCLC-stage IIIA' group since last night until now (yes, I couldn't go to sleep since receiving that phone call from the doctor).

- I am working as a software guy. I do work in an office environment. Will I be able to continue to work full-time while doing treatment? (I'm the only single income and I also need to keep my insurance and my wife's insurance by working)

[I'm not sure how to deal with my work yet. Am I supposed to tell my boss about my situation when I go to work Monday? I will have to if I need to take a lot of time off for treatment. What do you all think?]

Did I miss anything?

Please give me your advise, comment, inputs. I appreciate them all from my heart.

Thank you for listening.

-mike-

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185 replies   

Ana1

Hi, Mike. I'm sorry you are going through this. I do not have cancer but my son does. He has Hodgkin and has already started his chemo rounds. All I can say to you at this point is DO NOT DESPAIR. There is a lot you can do and nowadays, resources are much better than in the past. I was surprised to see that even the nausea during the treatment is already dealt with intravenously. The effects can be minimized and best of all, you have this fantastic support group. Do not feel intimidated to ask your oncologist about your concerns. It's his job and you deserve to know where you stand. The journey to healing is a hard one but it is doable. There are so many amazing recoveries. Be brave, have faith and welcome to this group.
Love,
ana

valorie

Hi Mike,

My husband has stage 4 non small cell. The people on this website are fantastic. Ask questions, learn. Don't pay a bit of attention to the statics you see on the internet. NONE.

Sorry you had to find this group, but you are in good hands here. They will be asking you some questions to better help you.

Keep the faith.

cards7up

Hi Mike, I have stage IIIA adeno and I'm NED, no evidence of disease. Do you know what type you have such as adeno, squamous, etc? This is normal protocol to follow when getting a complete diagnosis, you still need a PET scan and brain MRI. Meet with the surgeon and if they can do it, ask about doing VATS. This is a less invasive procedure with less down time. If you're IIIA, you will still need chemo whether you have surgery or not. The onc will explain the chemo they'll use and should explain expected side effects and any and all pre-meds. We can help once you know what the plan is. LC is no longer a death sentence and many survivors here. I'm 2 years out with mine and doing great. Wishing you the best.
Take care, Judy

Hope2727

Hi Mike

So sorry to hear about your devastating news. There are many long term survivors and stage 3a is "not that bad". Here's what I can define from your ct scan results:

examination confirms the presence of a 4.9 x 6.3 x 4.9 cm spiculated mass in the right hilum. Highly suggestive of neoplastic process.
AT THIS TIME THEY FOUND A MASS IN THE RIGHT HILIUM OF YOUR LUNG THAT WAS 4.9 x 6.3. x 4.9 cm BIG THAT WAS SUSPICIOUS OF CANCER. THIS WOULD NEED TO BE BIOPSIED IN ORDER TO BE SURE (WHICH YOU HAD DONE)

There is encasement of the right lower lobe bronchus. MInimal RIGHT lower lobe atelectasis is seen.
YOUR RIGHT LOWER LOBE IS ENCASED BY THE TUMOR AND BECAUSE OF THIS THERE IS MINIMAL COLLAPSE IM THE LOBE.

No significant mediastinal or hilar lymphadenophaty is seen.
NO LYMPH NODE INVOLVEMENT - THIS IS A GOOD THING AS LYMPH NODES HELP CARRY CANCER CELLS TO OTHER PARTS OF THE BODY, METASTASES, WHICH WOULD BE BAD.



No pleural fluid effusion.
NO FLUID IN YOUR LUNGS, ALSO GOOD. ONCE THERE'S CANCEROUS FLUID IN LUNGS YOU ARE AUTOMATICALLY STAGE 4.


Vascular and cardiac structures are normal. Bony structures are unremarkable
YOUR VASCULAR, BONE AND HEART STRUCTURES ARE NORMAL.

-----

Hope this helps!

testrider

Thank you so much, Ana and Valorie,

I'm still very emotional ever since I got the news yesterday and when I read your replies my tear ran down. I appreciate the warmth you gave me in your replies.

Thank you from my heart,
-mike-

Andromeda52

Mike, getting a lung cancer diagnosis is very frightening....we've all been through this first part. It's totally normal to be feeling all the emotions you're feeling. I'm glad you found this site, because very often you need to talk to people who are experiencing what you are experiencing. Friends & family members try to be supportive, but sometimes can't understand.
Sometimes they want to just forget about the cancer & go on like before, but unfortunately the person with the cancer can't just "forget". There is a lot of stress & anxiety that comes with having cancer. And that's where Inspire is a godsend. In addition to all the valuable knowledge & experience here regarding treatment, side effects....you name it, the people here are great for emotional support.
Please keep us posted. And if you do have surgery, there's many here, including myself, that have had surgery.
Wishing you all the best!
Gail

IKandy

Hi Mike.. Yes you are in good hands here, And yes don't read all that BS on the web... It's just that BS... And I would go to the Oncologist first.. He can explain everything to you and your surgery prospects. I can't believe your doc called you over the phone.. I think that is just COLD... Instead of talking to you face to face... I would let your job know what your going through or could be, There is the program FMLA which I have been using. I was working 8 hrs a day, And since my treatments I cut back to 6 per day, But my job I am on my feet all day, And I get pooped in the afternoons. My job has been so so supportive... And I am sure yours will be also. I have stage 4 lung cancer, But on the 17th of Dec I had Ct Scan & 19th was told it was clean. I had to have Ct Scans every 3rd infusion. To see if it was working... And Thank God right now.. All is good in my world and your will be to.. But I am far from 100% by any means... Because the chemo does wear u down... But come to Inspire and vent, Ask ? I am one of the worst I think for asking ?'s My oncologist tell's you all this medical term crap, I need plain english... Lol.... Good luck to you and yours...

mamanolte

Like Judy I'm also IIIA and NED since 8/08. My initial dx was IB and I had an URL via traditional thoracotomy as I wasn't a candidate for VATS. I did have weekly chemo and daily radiation after they found a mediastinal lymph node glowing in a follow up PET/CT. In addition to finding out what kind of lc you have you need to also find out if you test positive for any mutations.

Cheryll

testrider
  • By testrider
  • Reply 3677554 · In reply to 3677462 by cards7up
  • January 5, 2013 at 11:40 am
  • Report post

Hi Judy,

Thanks for the reply and I am so happy for you! I really do.

I'm not sure what mine is (adeno, squamous etc...). Is this something that the oncologist will tell me? I don't have an appointment with the oncologist yet.

The information is overwhelming for me at this moment. I will read up to see what PET scan, brain MRI, VATS are. I only had a CATSCAN and a bronchoscopy biopsy.

Thank you so much for your sharing and support. You can't imagine how much that mean for me.

Thanks again!
-mike-

testrider
  • By testrider
  • Reply 3677568 · In reply to 3677464 by Hope2727
  • January 5, 2013 at 11:45 am
  • Report post

Thank you so much, Hope2727, for the explanation. I appreciate it very much!

Now it's much clearer than when I read it myself.

Thanks again!
-mike-

malcontent

Mike, as you've already seen there's lots of great support here. My experience has been that this time after initial diagnosis is the most overwhelming. You feel scared and so unknowledgeable and uncertain about the future. Once you develop a treatment plan with your docs and start treatment, I hope you find you feel more in control.

Good luck!
Margie

testrider

Thank you Gail,

After reading all these supportive posts, I feel slightly better. As you said, I have never been in this emotional state in my life as it seems that everything just came down on me since I got the call.

I truly appreciate the support and sharing all of you provide at this difficult time.

Thank you all, from the bottom of my heart.

Please give me as much suggestions/inputs/advises as you could. Then at least I will know what to ask when I see the doctor next week. I'm not sure who I will see first, the surgeon or oncologist...

-mike

Denzie

Get yourself a notebook and start asking for copies of all reports or tests. The following is a comprehensive list of questions to ask doctors through each stage of diagnosis and treatment. Space is left for you to write their answers. Also take someone with you to help record answers.
http://m.cancer.org/acs/groups/cid/documents/webcontent/003285-pdf.pdf

You may want to wait until you have your full treatment plan before you talk to your HR person. Many here were able to work through treatment with very little time off. Each of us responds differently though. Please let us know how things go.

bbyrd

Mike,
I feel so blessed to have found this site and you will feel that way soon too.
Everyone has covered the bulk of it. If I had one thing to add it would be to always get every written copy of everything. You will forget so many things because of being overwhelmed. I go back often on my husbands paperwork, mostly when I know we are going to the doctor or getting more testing. I have copies of all the CT scans and PET and the biopsy too. They should give them to you when you ask.
adding you and your family to our prayers!
Brenda

testrider
  • By testrider
  • Reply 3677667 · In reply to 3677462 by cards7up
  • January 5, 2013 at 12:21 pm
  • Report post

Hi Judy,

I'm rereading your post and I have a question: why the need for a 'brain MRI'?

Thanks!
-mike-

testrider
  • By testrider
  • Reply 3677680 · In reply to 3677629 by Denzie
  • January 5, 2013 at 12:27 pm
  • Report post

Thank you so much Denzie,

The pdf file you posted is excellent! I'll print it out and I will ask those questions when I see the doctor.

I appreciate it.
-mike

MARIA59

Mike as everyone says, wait until all the facts are
in. When you have your medical team behind you
they should be of great support to you. Don't jump to conclusions yet. We have all been in your shoes when
we were first diagnosed. All seems surreal and
all you want to do is get the cancer out. I will
pray that all anxiety that your feeling now will
ease with the help of your medical team and of
course this web site.
MARIA

testrider
  • By testrider
  • Reply 3677692 · In reply to 3677647 by bbyrd
  • January 5, 2013 at 12:32 pm
  • Report post

THank you Brenda,

Thanks for the advise. I didn't think of putting everything together. I will do.

I appreciate the prayers.

Thank you so much!
-mike-

Denzie

Hey Mike, the MRI is to rule out brain metastasis. The CT scan is not useful there.

howian1

I'll try to answer your questions. (I am not a doctor).

1. Treatment Hospitals which handle cancer treatment can be labeled Comprehenive Cancer Centers. Ideally you want a doctor who specializes in lung cancer or thoracic oncology, since there can be no developements in treatment, etc.

2. Negativity Not surprisingly much of the research comes from clinical trials. Since people tend to enter a trial as a last resort, and the data may deal with people with advanced cancers and it can sometimes be negative. You may find more positive stories here.

3. Surgery If surgery becomes an option, you want to check on the doctor, hospital, and anesthesiologist.

4. Questons and preparation Ideally you'd like to ask your doctor many questions. Unfortunately, your doctor may work 50-60 hours per week, charge a set amount for each visit, and may not want to spend an hour or two each day telling people about their treatment. Therefore you want to do what you are doing, get up to speed, and ask your most important 2-3 questions first.

5. Tests You asked, PET scan, brain MRI, VATS are. I only had a CATSCAN and a bronchoscopy biopsy.
A PET is a comprehensive test which sees if there is any cancer in the body. The test can present false positives, lighted areas where there may not be anything wrong. A CT (CAT) Scan is a reliable test used for a specific area such as the chest. Far better than an x-ray, it can detect the status of a tumor. The bronchosopy and a surgical biopsy looks at the tumor and analyzes the tissue to provide a type such as adenocarcinoma. In recent years, such sophisticated tests an look at the specific oncogene or growth factor.

6. Evaluating doctors It is hard.

There are capable doctors who are short and abrasive and seemingly caring and concerned doctors who are not particularl knowledgeable about the latest treatments. Sometimes people in the medical area with direct familiarity can help.

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