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Jimmy's Lisa

Confused about everything almost.

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We found out last week that my husband has lung cancer. I've been taking him to er's, urgent care and a doc since December. Had diagnosis of pneumonia a couple of times (which he has too) and a pulled muscle once.  Tuesday morning he was hurting so bad and couldn't hardly breathe that he couldn't even make it to work. I brung him to the er in the town over and they told us it looks like cancer and transferred him to a better equipped hospital where we stayed the next four days. They assigned him a pulmonologist and a oncologist and their own MD. That was a rollercoaster ride all week. Three different docs saying slightly different stories. One would be optimistic, one would be pessimistic and the other really tried to stay neutral. There was so much info being thrown at us that I had to start a notebook. Monday we had our first appt with the oncologist which was very pessimistic (or realistic, idk honestly).  Then we went to meet with the chemo doc an hour later and he shown us a more positive plan. Said there may be light at the end of the tunnel. We have so many questions still. His bone scan is clean and he should be having a PET scan sometime this week.  

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Lisa,

Sorry to hear about your husband's problems.  Everyone here can relate to what you're feeling as we've all had to go through it ourselves.  At this point the world must seem upside down and sideways to you all at the same time.  You're going through the diagnostic process and it sure can be a confusing time.  Mine was up and down; one minute being told that I was okay, then they weren't sure, then more tests...wow, it was a ride.

At this point just take it one step at a time...try not to jump ahead of what the doctors say but listen as carefully as you can, take notes (I see you've started that) and always come with any outstanding questions you have (written down also).  I thought my doctors (pulmonologist and thoracic surgeon) were saying different things at one point so I raised what I thought were conflicting statements and learned that they were both on the same page, but looking from their viewpoint...diagnostician versus surgeon.  

If Jimmy is already showing symptoms as you describe he'll likely be getting chemo and/or radiation treatments.  I had a non-symptomatic nodule that was detected by an unrelated CT Scan that resulted in a lobectomy for me.  But, others here have experience with chemo and radiation and will be able to answer any questions you have better than I.

But, this is a difficult time so please try and do some self-care while you're going through this with you husband.  You need to be healthy and strong to better support him and that means well-fed, rested and relaxed (as much as possible).  It's okay to take time for yourself, so please take care.

There are great folks on this forum; so feel free to share, ask questions or just chat as you need.

Lou

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Hi Lisa,

Welcome here and unfortunately welcome to the roller coaster ride of lung cancer screening.  Has your husband been diagnosed with lung cancer yet or are the scans and other tests just pointing to lung cancer?  A definite lung cancer diagnosis usually comes from some sort of biopsy and it's really the only true way to know if someone has lung cancer and what type.  After a biopsy, the sample is often tested for any biomarker/genetic markers that can help identify if the lung cancer has any special characteristics that can be helped by targeted treatments. If/when your husband has a definite diagnosis of lung cancer, be sure his biopsy is having these follow up tests.  All of the scans your husband has/will have will then help with assigning a "stage". Stages are mainly for aiding in the docs decision of the best way to treat the cancer - surgery, chemo, radiation, immunotherapy, targeted therapy, etc. 

As you have described, this process is a roller coaster.  Everyone here, whether they are the patient or caregiver has gone through it.  We understand how you are feeling.  I like your idea of keeping a notebook...I keep one too - it's the only thing I feel I have control over and helped me to feel better.  I was also able to catch a few things with my mom that docs weren't catching.  So, it sounds like you are off to a good start.  

If I could make 1 suggestion - if you haven't already, head over to LUNGevity's main website and check out Lung Cancer 101.  There's lots of great info and checklists you can use during doctor appointments.  This site was a lifesaver when my mom was going through her diagnosis of her lung cancer recurrence.  

Take Care,

Steff

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Jimmy’s Lisa, I recently encountered the same type of doctors. Pulmonary was optimistic, but fairly neutral, oncologist was negative and radiology/oncologist was very positive. Just kind of strange really. So sorry that you and your husband are going through this. Bless you.

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Lisa,

One thing I can report with certainty about everyone on this forum: we all went down the diagnostic wormhole and all of us survived.  There are lots of tests, unknown-unknowns, fear and confusion, but all of us survived diagnosis. The objective of diagnosis is the design of a treatment plan and lung cancer today is very treatable.  Here are some tips and tricks I accumulated during my diagnosis and early treatment phases.

Fortunately today, there is more than hope available as treatment. One more thing, I'm a 15 year survivor of late-stage diagnosed NSCLC and also a Texan. If I can live, so can your husband.

Stay the course.

Tom

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1 hour ago, Isabelle49 said:

Jimmy’s Lisa, I recently encountered the same type of doctors. Pulmonary was optimistic, but fairly neutral, oncologist was negative and radiology/oncologist was very positive. Just kind of strange really. So sorry that you and your husband are going through this. Bless you.

Almost the same exact thing happened to men. Thoracic Surgeon very positive oncologist and pulmanary doctors not so good. I am going through the diagnostic screening process now and the roller coaster ride is a good analogy. Feeling like a yo-yo is good. 

   I found that waking up in the morning and seeing how I feel is much better than asking the doctors how I am. If I am feeling good today then the heck with what the doctor says. I will say that today I feel okay..I don't know how I will feel tommorow or the day after that. But if I am okay I am not going to let what a doctor says to take away how I feel on that day. Or at least that's how I feel about it

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Hi Lisa,

Others have given you some great advice and I don't have anything to add except welcome here and keep posting. Let us know what questions you  have and how we can support you.

Bridget O

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Hi Lisa, 

My friends here have given you some good information to get you through this very difficult time.  We went through the shock of this through multiple PCP and Urgent Care visits last       summer when finally a very smart nurse ordered a CT scan.  

First and foremost, we tell everyone to stay away from Dr Google.  There have been so many emerging treatments that it’s impossible for even the doctors to keep up with the science. 

Second, there is life after a lung cancer diagnosis, albeit a new one, our condition is managed as a chronic illness. For now it’s one day at a time and sometimes one hour at a time.  The emotional roller coaster is a ride no one wants to take.  Give yourself permission to adjust, we’re here to help carry you through. With each passing day it does get easier.  

The diagnostic process unfortunately doesn’t move as quickly as any of us like, so the waiting is really hard. Once you’re through all the tests and scans you will feel a much greater sense of control. 

Once you have a diagnosis, find an oncologist who specializes in the specific type of lung cancer.   You’re in Texas so if you’re near a major academic center that will make your life much easier as comprehensive cancer centers do a great job of managing the complex schedule. 

Let us know what questions you have and we’ll all pitch in to help. 

Michelle

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