Not really sure if I should be here or not

[drg6976]

Hello, my name is David and I'm not really sure if I should be here or not. While I have not been officially diagnosed yet, I believe that it is a mere formality. I was just discharged from the hospital with complaints of shortness of breath and chest pain. Among the multitude of test preformed there was a CTA scan with contrast. The following is an excerpt from that.

            CTA Chest With Contrast

            There is a 4.2 x 3.7 x 2.6 cm sized right lower lobe lung mass felt to
            represent primary lung carcinoma until proven otherwise superimposed on
            severe emphysematous change. There is an 8 mm adjacent satellite nodule
            noted in the right lower lobe as well. Borderline right hilar lymph node is
            noted, as well as a mildly enlarged lymph node just below the right bronchus
            intermedius and adjacent to the distal thoracic esophagus. No other
            lymphadenopathy seen in the chest.

 

            They wanted to do a Bronchoscopy immediately, but I have an artificial heart valve and I am on Warfarin. My INR level was too high for a biopsy.  I was sent home to return in a few days for the procedure. Perhaps I am wrong, but it appears to me that in this case the biopsy is less about determining benign/malignant and more about detecting the exact type of carcinoma I have?  Also, the involvement of the lymph nodes greatly complicates things?  I have zero knowledge on the subject, everything I have leaned has been in the last 48 hours., but if the nodes are indeed involved that would be Stage IIIa or b, no?

            I hate to be a bother, but frankly I have no one else to ask. Google is terrifying! I have been reading post from the amazing, brave, and wonderful people here on the forum and was hoping to get some advice on what I am looking at. Am I wrong to be terrified?

Thank you.

[Curt]

Hello David.  I’m so sorry you’ve had to find this group.  The diagnosis phase of lung cancer is very scary and somewhat vague until a biopsy can be performed.  As you’ve identified they can assume a mass is something but often will wait for a biopsy to confirm it.  Lungevity has some terrific resources I encourage you to read.  Please know that much of the statistics you read online is dated information.  For example five year survival rate data is based on people diagnosed five years ago.  There have been a lot of advancements in lung cancer treatments over the last five years and those statistics are changing.   Google can be a scary place for info.  I encourage you to ask your questions here and use the Lungevity site for the resources you need.  If it is cancer there are treatments that can alleviate some do the symptoms you are experiencing.  

[RonH]

David,

I am NOT a medical professional and am just going on my own personal experience, so be sure to follow your actual medical advice from the professionals. Due to being a former smoker over age 55, my PCP had me have a low dose CT during my annual physical, which ultimately found several suspect indications in my right lung. That was followed up by a regular CT with and without contrast which further defined those indications as well as identified several suspect local lymph nodes. Then I was sent for a PET scan which confirmed that the indications were very likely cancerous. Next was the CT guided lung needle biopsy which confirmed the type of cancer in my lung. Next was a brain MRI to see if it had spread to my brain, thankfully it hadn't. Next there was an EBUS needle biopsy of the suspect lymph nodes, which confirmed the cancer there. At that time, I was diagnosed with Stage IIIA NSCLC.

I also ended up with a chemo port being implanted for my various treatments for the past 18 months consisting of concurrent chemo & radiation, additional follow-up chemo, then Immunotherapy infusions for 10 months, and soon to be started I think with Targeted Therapy. Yes it's been a long 18 months and there are plenty of ups and downs along the way. The key is to maintain a positive attitude and the desire to keep on fighting.

Previously I had a heart attack and as a result I am in Chronic A-Fib, so I am permanently on the anti-coagulants and blood thinners, so before either of the biopsies, I have to go off the Plavix for at least 5 days, and off the Xarelto for at least 2 days. How long off these and if I should be on baby aspirin while off them is ALWAYS a point of contention between my Cardiologist and the Interventional Radiologists and the Pulmonologists who do the biopsy procedures.

By the way, just from my experience, when they do the biopsy, and if the Pathologists confirms it is cancerous see if your Medical Oncologist will have the samples shipped off for Biomarker / genetic testing. (My Med Onc uses Tempus xT that has a patient maximum $100 patient out of pocket program if pre-approved). Some will and some won't at this point. Also it may be out-of-network for most insurances. You can read all about the genetic testing, etc in the forums here.

Sorry you find the need to be here. There is a ton of valuable information and experience in these forums. Best of luck.

-Ron

[LUNGevityKristin]

Hi David,

I'm sorry you had to find this group, but everyone here is very supportive and helpful.  LUNGevity has a lot of resources that can help navigate a new diagnosis.  Lung Cancer 101 is a good place to get started.  LUNGevity also has a HELPLine that will connect you with an oncologist social worker that can answer questions and provide resources for you.

If you have any questions, please ask.  We are here to support you!

 

 

[LouT]

Hi David,

We're glad you found the forum and sorry you need to be here.  Hearing that you may have lung cancer is a scary thing and (unfortunately) we've all gone through it so we can understand what you are going through.  You read observations from scans that were done without the context of further analysis and diagnosis.  While it is likely that you have LC it is not guaranteed until you have the formal diagnosis.  Once you have that your medical team will come up with a treatment plan that you can assess and participate in.  Visit us often, ask questions and read some of the other posts and you'll get through this.  Survivability has never been greater for LC than it is right now so be of good cheer.  As your diagnosis is formalized we'll be able to give you more information from experience.  Stay strong and don't anticipate too much...we know that is a hard thing to do, but you'll do better just focusing on the present and getting the DX and treatment plan.  

Lou

[Tom Galli]

David,

Welcome here.

What will your biopsy reveal? You were right on both counts: a benign or malignant mass and if malignant, your type of lung cancer. Kristin suggested a visit to Lung Cancer 101. Here is where lung cancer types are discussed. Ensure you ask the doctor performing the biopsy to send tissue samples for further laboratory Biomarker Testing to check for markers that indicate suitability for Targeted Therapy and or Immunotherapy. 

You asked if lymph node involvement complicates things.  Perhaps but it depends on proximity to the primary tumor and a whole bunch of other factors that only a doctor can explain. As for staging, you'll likely have further diagnostics including a PET scan, and perhaps a brain MRI and or bone scan and results from these will give a clearer picture of staging. 

Please do moderate your time with Dr. Google. Survival statistics there are outdated and do not account for the tremendous impact on progression free survival from Targeted Therapy and Immunotherapy. Moreover, there is a lot of imprecision on the way lung cancer statistics are captured and updated. This offer a further explanation on the imprecision.

I was diagnosed at stage IIIB that progressed to stage IV after tumors metastasized to my remaining lung after a pneumonectomy. My diagnosis was almost 16 years ago but if I can live, so can you.

Stay the course.

Tom

[BridgetO]

Hi David and welcome! These forums are a good place for you to be.  You've received some excellent info from other members and I don't hav emuch to add. My lung cancer was small, stage 1a and all I needed was surgery. However I've had two other primary cancers, one of which was stage 3 and aggressive with a " dismal prognosis" so I've been through radiation and chemo too. I'm now NED on all 3 cancers. If you haven't run into the term NED before, It means No Evidence of Disease and it's often used nowadays instead of "cured" or "in remission". So I'm here to tell you that treatment works and that I advise not relying too much on statistics. Best wishes to you. 

Bridget O

[drg6976]

Thank you all for replying. The information and advice has been helpful, and I am trying to stay positive.

[LUNGevityKristin]

Hi David, just wanted to check in and see how you are doing.  Have you had any of the other tests done?  Thinking of you!

[drg6976]

A bronchoscopy was preformed Tuesday, am expecting to hear from the Doctor regrading the pathology report today. From what I can recall in my anesthesia haze, he spoke of either a wedge resection or lobectomy, depending on my lung function. He was fairly positive that this would be the best course of action in my case. I'm just trying to remain positive, praying a lot (For myself and for all of us.) and awaiting the results. No mention of lymph nodes that I can recall, but may be wrong.

[Curt]

I know all of this is scary.  I’m really sorry you are going through it.  The words wedge resection and lobectomy sent me into a panic when I first heard them.  Please know that it is not as bad as you are likely thinking it is.  It wasn’t nearly as bad as I though it would be.  The surgery isn’t fun and the recovery takes a little while but you can make a complete recovery from either procedure.  In terms of treatment it is the best case scenario.  If you have any specific questions about either procedure, what to expect during and after please ask.  There are plenty of us here who can help you through it.  

[drg6976]

I am in a state of near shock. My doctor hasn't called yet, and not wanting to go the entire weekend with this hanging over my head, I called his office. The nice woman I spoke with informed me that the 'Full Report" (Whatever that means.) is not finished yet, and that is why the doctor has not called me. However the SURGICAL PATHOLOGY, was back.

NONGYNECOLOGICAL CYTOPATHOLOGY CONSULTATION

-- Diagnosis --
BRONCHIAL BRUSHING RLL SUPERIOR SEGMENT:

NEGATIVE FOR MALIGNANCY.

BRONCHIAL WASHINGS RLL SUPERIOR SEGMENT WASHING:

NEGATIVE FOR MALIGNANCY.

I was able to access the report myself online, and I still can't quite believe it. Is there such a thing as a false negative?  I only ask because after the bronchoscopy he (The doctor) said it certainly looked malignant to him, and discussed various treatment options with my wife. I guess I can breathe a little easier now, but to be perfectly frank, I do not feel much better about it. Something akin to survivors guilt? I don't know. Anyway, my prayers and best wishes goes out to the members of the club that nobody wants to join.  Yet has some of the finest people in the world as members.

[drg6976]

Turns out my instincts were correct. Non small cell lung cancer, squamous cell carcinoma. PET scan scheduled in two weeks.  Meeting w/ oncologist Tuesday.

[Tom Galli]

David,

Sorry to learn of your diagnosis and of your troubling path for getting information. Every time I read of someone's new diagnosis I recall the confusion and fear of my own. Understanding lung cancer (any cancer for that matter) like trying to learn to speak, read and write a foreign language in a week.  This may help you navigate your road toward development of a treatment method.

We will help you master your new vocabulary. We share a diagnosis -- squamous cell -- and while it does not respond to targeted therapy, it does respond to immunotherapy.  Therefore, I strongly suggest your first ask of your oncologist is to have your biopsy tissue sent for to determine your PD-L and PD-L1 profile.  

Stay the course.

Tom

[Curt]

I’m sorry to hear that David.  I was hoping it was a “True” negative for you.  

[LouT]

David,

I'm sorry to hear about your diagnosis.  In my case it was also NSCLC Squamos Primary Lung Cancer so I'll be interested to hear the rest of your diagnosis and treatment plan.  In my case it was caught early enough that I went through a lobectomy and did not require chemo or radiation.  Let us know how the rest of your testing goes and what the plan of treatment is.  It's likely we'll be able to give you some insights from our experiences. 

Stay calm and focus on the now, not the future so you'll be in better shape to go through treatment.  We're all pulling for you.

Lou

[MarieE]

On 10/25/2019 at 9:00 AM, drg6976 said:

Turns out my instincts were correct. Non small cell lung cancer, squamous cell carcinoma. PET scan scheduled in two weeks.  Meeting w/ oncologist Tuesday.

My husband and I are working our way through this as well, just a little ahead of you. He had a robotic lobectomy almost two weeks ago. Pathology results confirmed cancer also in 4 of 17 lymph nodes tested so we are waiting to get details about what's next (chemo, etc.).

I can certainly relate to the feelings of uncertainty. We found that it helped as we learned more and developed a plan of attack. And the others here have been immensely helpful in keeping us positive and moving forward.