Lung Cancer - week 1

[MrsA]

My doctor called me last wednesday to tell me I have lung cancer. She said it is 1cm on my right side. She said I need to go see another doctor to talk about my options. I will need a biopsy. There is surgery. There is chemo. There is radiation. I may not need them right away but they will be able to tell me more when I hear from them within two weeks to go for an appt. I cried. I cried hard and alot. I had to tell my new husband. I had to tell my kids. My step kids are younger so he chose not to tell them at this time. Every day I feel different about life now. Some days I got this. Some days I dont want to deal with it anymore. Its only been a week and its already controlling my life. What can/do I do now? What is going to happen now?

 

[Lin wilki]

It’s hard but wait for the facts. Sounds very early!  Once you see doctors and get a plan you will be able to say strongly “I got this”

No one wants this prognosis but now you do.   So you attack it!

[GaryG]

MrsA: First of all how did your doctor determine that you have lung cancer and what type of doctor is he/she??   

[Lanny]

 I no this is a big shock for U but U have to stay strong I am on my second Chemo treatment they can not do surgery for me it is Metastasis 

in my right lung & in the lymph nodes in my neck 

U just need to try & enjoy each day

good luck

[Rower Michelle]

Dear Mrs A.

Welcome here.  I’m sorry to hear about this diagnosis, I was 51 in learning I had non small cell lung cancer.  Life is inside out and upside down.  There’s a lot of testing to the diagnostic process, the biopsy, a PET scan, a brain MRI and something technical called biomarker testing (aka next generation sequencing).  There’s no way around the hurry up and wait part of all of this which can take up to four weeks.  
 

We advise everyone to stay away from Dr Google, there are only two reliable sources Lungevity and the Go2Foundation.  Anything else is sketchy.   For some unknown reason women are at high risk for lung cancer, all you need is a pair of lungs.  
 

In the last three years there has been more treatment advances than in the last fifty.  Personalized medicine has created unprecedented survivorship and it all boils down to the comprehensive biomarker testing results.  
 

Some hours will be fine and others you’re fighting off heaving sobs, an emotional roller coaster no one ever wants to be on.  It’s all normal.  Try not to bottle it up for the sake of being brave.  There will be brighter days ahead and we can carry you through.  
 

Michelle

[Judy M2]

MrsA, the other members have said it all. You will naturally worry a lot until you get your testing done and then a treatment plan. All of us have been where you are and we are still here! Take one step/day at a time. 

Good luck and please keep us posted. 

[LouT]

MrsA,

I'm sorry that you are so upset at the news your received.  I do have a couple of questions though...  Based on the experience of almost all of our forum members the diagnosis of cancer usually occurs after a biopsy rather than before it.  I can understand a 1cm growth (close to 1/2") being a cause of concern for any doctor, but until other tests such as PET Scan or Biopsy are done it would be hard to have a conclusive diagnosis. 

So, my questions are:

1.  What tests did your doctor perform to confirm that the growth is cancer?

2.  Who told you that you would need surgery, chemo and radiation?

The diagnostic phase of this disease is always a trying time.  We go and submit to a variety of tests and then we have to wait for results which can be very anxiety-inducing.  But without all of the tests being completed I haven't heard of a "confirmed diagnosis" of cancer.  Now...once all testing is done and the diagnosis is complete (confirmation of cancer, understanding what stage it is, knowing if there are any notable mutations, etc.) then your medical team will determine the best treatment plan for you.  It could be "surgical only", chemo and/or radiation or some combination of the three.  But, that doesn't come until they understand what you are dealing with.

I don't know who has told you what, but I can tell you something I learned going through my own lung cancer journey:

1.  Don't assume anything about your condition until it is confirmed via a solid diagnosis.

2.  Ensure that you have a solid team around you.  That could include your PCP, a Pulmonlogist, an Oncologist and a Surgeon, others might be added (or not) as needed.  This is the group that will determine the best treatment for you and how it will be administered.

3.  Use the resources here at Lungevity to understand all you can about the disease you may be facing.  You can find many topics a our Lung Cancer 101 articles that are here.

4. Don't allow yourself to be sucked into Dr. Google.  Michelle already gave you solid advice on that.  Stats online are out of date and do not accurately portray the latest treatments and outcomes in their numbers.

5.  Do not "CASTASTROPHIZE"!!!  I did that like crazy.  I had already given up on life until I came to this forum and began asking questions.  I learned so much from so many people that I was better prepared for what was ahead of me than I ever thought I could be.  Ask all the questions you want here and folks will respond with their experience.  You'll have the support you need and we're happy to offer it.

6.  Take time to enjoy every day.  Focus on working with your medical team on a solid diagnosis and, if needed, a treatment plan, but also take time with those kids, your husband...find something to laugh at (for me it's reruns of certain shows), pickup a hobby that means something to you.  Get out of your head and understand that they will finally come to a decision about what the growth is and, if needed, the best way to treat it.

7.  Know that there are many survivors here and that there are more everyday.  Cancer (even lung cancer) is not the certain death sentence that it once was.  Get to know some of our folks...let them show you that there is hope.

I look forward to hearing more from you.

Lou

[Judy M2]

21 minutes ago, LouT said:

MrsA, 

So, my questions are:

1.  What tests did your doctor perform to confirm that the growth is cancer?

2.  Who told you that you would need surgery, chemo and radiation?

When my primary physician diagnosed lung cancer after a CT scan, she gave me referrals to a pulmonologist, radiation and medical oncologists and a surgeon. MrsA may have also received the same referrals from her doctor. However, my treatment plan was not created by the oncologists until I had a bronchoscopy with tissue biopsy and genetic testing. I was not a candidate for surgery. 

Lou's advice is excellent and I wish I had known about this site last year when I was diagnosed. 

[BridgetO]

Hi Mrs A and welcome. I had a lung nodule about the same size as yours, which is small. Normally, a biopsy is done before any surgery, but my nodule was in a location where that couldn't be done. I had surgery by VATS (video assisted thoracic surgery), which only needs small incisions. I was released from the hospital the next day and recovered well at home. My nodule turned out to be adenocarcinoma, the most common type of non-small-cell lung cancer (NSCLC). It was stage 1a, the earliest stage, which means it was small and hadn't spread beyond the original tumor. 

I didn't need any chemo or radiation. It's common for only surgery to be recommended for these early stage cancers. I do need to have regular CT scans to watch for possible recurrence. My surgery was almost 4 years ago, and today I'm well with a good quality of life.

A possible cancer diagnosis is always scary.It's normal to be upset. It seems like your doctor may have told you some things that have unnecessarily caused you to be evan more upset. You won't know what your really dealing with until you see  a specialist and  have testing. 

I'm glad you found us. Let us know what questions you have and how we can support you. That's what we're here for. Hang in there.

Bridget O

[Tom Galli]

MrsA,

Welcome here. 

Everyone's comments are relevant. Without a biopsy and pathology examination, one cannot be sure of cancer. So there is still uncertainty, and I do hope your doctor is mistaken. If not, I was diagnosed in February 2004 with a large tumor in the main stem bronchus of my right lung. Three plus years of near constant treatment was a slug, but I can say with conviction: if I can live, so can you.

I often share this with new folks. In your circumstance, it is just in case. Do let us know about future diagnostics if you feel comfortable.

Stay the course.

Tom

 

[Lisa Haines]

Mrs A

Please know that the only way to totally confirm lung cancer is by a biopsy.

 Yes, scans and x-rays can show areas that may appear to be cancer, but a biopsy is necessary, so that would be my first step.  

Everyone has shared wonderful and very informative posts.  I hope you know that we as lung cancer patients/survivors all know how you feel.  I wish you the very best and Hope there's still a chance it's not cancer.  If however it is, you'll find a great deal of support here.

Take everything one step at a time.  Take care.