Inadvertently discovered a 2.5 x 2.6 cm nodule on lower right lung

[Debbie M]

 Reposting on a new thread as suggested by LA NYC - hopefully I'm doing it correctly now.

Hi everyone, 

I'm a young and healthy 56 year old that went to ER due to crazy pain in my arms and chest.  All heart related tests came back fine but the xray showed a 23mm nodule on my right lobe.  This is a shock to me.  I've never smoked and consider myself a healthy person.  After receiving this news, I had to wait 2 weeks for my primary care dr. to return from vacation before I could get authorized for a CT scan.  My results from CT scan (a little over 2 weeks later) now shows a 2.5 by 2.6 cm mass on my lobe.  So, while I'm not a dr., it seems to me that my nodule is now being referred to as a mass in the report.  They recommend a Pet Scan next.  This is scary as hell.  I haven't told anyone about it, waiting for a more definitive diagnosis.  "IF" this is cancer, do any of you have recommendations on how/where to find the best doctors for further treatment?

Update on 8/23/22:

I'm so lost.  Since my lung nodule was accidentally discovered (I went to ER thinking a heart issue) by Xray, I was unable to do anything further until my GP hometown dr returned from vacation 2 weeks later.  I hate that my next steps and coordination have to go thru GP.  No one would schedule me for anything without his prescribed order.  I tried calling pulmonologists but they will not see me until months out.  With a 2.5 x 2.6 cm nodule (larger than the 23mm nodule on my xray 2 weeks prior), I don't feel I have time to waste.  I was able to schedule a Pet/CT scan but moved to another facility since the first one was using a machine that is 12 years old.  I worry this will be too much radiation with antiquated equipment.  The new pet/cT scan is now on Monday but they are telling me they use barium drink instead of the glucose injection for the scan.  I'm so confused and I have no one other than my GP (and maybe some of you on this forum) to help.  I live in Northwest corner of NJ so everything is a ride.  Morristown Memorial and RJBarnabas hospitials are probably my closest solutions but I need to go somewhere that specializes in Lung Cancer if I end up with a positive diagnosis.  I can say I have mild pain throughout my chest and wonder if it's all in my head knowing there is a nodule in my lung but I did go to the ER initially thinking I was having a heart attack so I guess it's not all in my head.  

I'd love any advise on how to find a qualified "team" of lung specialists that can help me navigate through my upcoming journey.  If you have any suggestions on where to find them, please share.

Thank you for reading this long post and for any help you can provide.  

All the best,

Debbie

[LouT]

Debbie,

Sorry you need to be here, but glad you found us.  You're going through a time that we all remember and all were as confused, terrified, and anxious as can be.  But there is a lot of support here and you won't need to go through this alone.  I'm sure you'll be hearing from others soon, but frankly you need to go to the best place in your area for cancer treatment and you'll likely need an oncologist, surgeon, and perhaps even a pulmonologist.  Speak with your PCP to determine the best place for treatment and then work there to put together your team.  Also take a look at the following information:

o  This is an article on your medical team and may provide you with some information that can help you and your PCP to assemble the right team to take you through this journey.  It can be found here.

o  In addition there is a blog titled "10 Steps to Surviving Lung Cancer; From a Survivor" written by one of our members diagnosed with Stage 3 then 4 almost two decades ago.  It is on this page.

I'm sure you'll be hearing from others soon, but please try to hang on...you can work through this, you're stronger than you think and you're not alone.

Lou

[Justin1970]

Hi Debbie 

Sorry to hear your going through this,in the beginning it is very hard to get to grips with and all of us have felt the same way as you are but please try and stay as strong and positive as possible until you have all the information and get a treatment plan in place,everyone is here with you and will help you through this 

All the best Take care Justin x 

[LA NYC]

Hi Debbie,

I’m so sorry for all your wait and worry. If you do want to “ take the ride”, ( probably an hour and 45 minutes!) I would still recommend your coming into the city and making an appointment with either NYU or NY Presbyterian. Both hospitals have the latest equipment, scanners, and teams of doctors highly specialized in Lung Cancer treatment. I have a wonderful Pulmonologist that took my case very seriously and then referred me to a top Cardio-Thoracic Surgeon(who I will be having surgery with in 2 weeks) They work together as a team, and I know I’m in great hands and my worries are eased. They are also warm and personable, take time with you, give helpful, knowledgeable, experienced information to help you make the best decisions going forward.

Being new to this board myself, I’m not sure if I can post the Dr.s names here, if so, and you would like them, I’d be happy to share that with you.

Will be keeping you in my thoughts. Glad you reposted. So many wonderful, supportive people here.

Best,

Lori

 

[Debbie M]

Dear Lori, 

Thank you for your kind email.  I’m happy to hear you’ve found the right Drs to feel cared for.  It’s wonderful to learn of Cancer survivors on this forum and the incredible outpouring of support.  I am going to have my pet scan tomorrow on the 2010 Phillips Gemini machine where I know I’ll be doused with more radiation than newer models but I really need a diagnosis.  If it is cancer I’d love to learn of your Drs names in whatever way is appropriate.  
 

Thank you again for your kindness- everyone on this forum is wonderful and comforting. 
 

Debbie

[Tom Galli]

Debbie,

Ok, first try and relax. You've got a lot more medical "discovery" procedures to endure and all of these will tax your patience. This outlines your future path for the next several months. Your doctors will need to perform a tissue biopsy to determine if the nodule or mass is lung cancer. Then if it is lung cancer, the type (read here) must be resolved before deciding on the type of appropriate treatment. Type determination is by tissue biopsy so there will be an additional wait to schedule the procedure and after a sample is received an additional delay for the pathologist report. We are all concerned that this diagnostic delay will cause the nodule or mass to enlarge or spread through the body. Cancer does grow and spread over time but that growth happens in a long number of months, not a number of days and weeks.

Don't worry about the terminology used to discuss your spot, nodule or mass. There is a size delineation where something translates from a nodule to a mass and yours is close to that boundary. A nodule is no worse nor better than a mass. If you have lung cancer, the term nodule or mass will not affect the type or duration of treatment you have. So, don't worry about what your physicians call this thing you have.

Please also don't worry about medical radiation needed to diagnose your nodule or mass. I was diagnosed in 2004 and have had hundreds of x-rays, CT scans and PET scans during the almost 19 years of my treatment history. If you have lung cancer, the projected harm from medical radiation is so very, very, very low compared to the potential harm of your cancerous nodule or mass. And note, I am using the word "if" in my answer. There are many things this nodule or mass could be besides lung cancer. And, we are all hoping this nodule or mass is not lung cancer. 

Here is some advice on where you might be treated if you have lung cancer. Most of the treatment for most types of lung cancer is standardized and pre-defined by a "national standard of care." That means your first line (first type of treatment), including surgery, and second line (second type of treatment) are already known and defined. People presenting with say squamous cell non small cell lung cancer with a single nodule or mass in one location in the lung will likely be worked up for first line treatment that is a surgical resection. There may be post surgical radiation or chemotherapy but these treatments are determined after surgery depending on what the surgeon sees and how the medical oncologist considers the pathology examination. So if first and second treatments are already standardized, you will receive these treatments if you are treated at a local oncology practice or a world class cancer treatment hospital. Third line treatment is where medical oncology judgement is required. You might never need third line treatment and let's hope you don't. But, if you do, then best advice is you seek that treatment at a world class cancer treatment facility. I had five lines of treatment all performed by and supervised by a medical oncologist who practiced at a neighborhood oncology practice. But, when I was diagnosed, medical oncology treatment was only one or two drugs because that is all that was available in 2004. Now we have standard of care medications that are targeted therapy or immunotherapy drugs. And these are now incorporated into national standard of care treatments so they will be available at a local oncology practice or a big time cancer treatment hospital. Big time cancer treatment hospitals have their place but also consider that close to home treatment that is defined by a national standard of care has advantages of avoiding extensive travel or overnight hotel stays near a large metropolitan hospital.

My best advice is to find a local medical oncologist that you are comfortable with. Engage with that doctor during the diagnostic process (now). Ensure additionally that you obtain a consultation with a radiation oncologist during this diagnostic process. The radiation oncologist has different and effective tools that may be curative and you might want to know about those treatment methods before deciding on your first line treatment. Find a pulmonologist now that you are comfortable with. If you have surgery or radiation as a treatment modality, you may need to be seen and treated by a pulmonologist so audition one now before you need to find one. And, ensure you have a good and trusted general practice doctor. Never underestimate the value of a good general practice doctor. Mine engaged early to save my life. The most important question to ask your general practice physician is "will you fill side-effect medication prescriptions if I can get in to see my treating medical oncologist?" If the answer is no, find someone else.

This is the place for questions about lung cancer. Let's hope for now that you have no need for further questions because your nodule or mass turns out to be something other than lung cancer.

Stay the course.

Tom

 

[Rower Michelle]

Hi Debbie-

Jersey Greetings to you.  I was born and raised there; it's still my home as that's where my family is.  I was raised in Bloomfield and my husband and I lived out in Sussex.   I can appreciate your angst as the local medical care there isn't easy to access and Newtown Memorial isn't a National Cancer Institute.  

Jersey has one NCI- down at Rutgers, which is a hike from you.  I've been a member of this Forum for years now; most people out in Sussex and Warren do end up making the trip into the City where there are better experts at a Comprehensive Cancer Center, which has access to all the latest protocols.   Lori has given you some great advice.  I suppose taking the bus is the best option rather than facing the traffic.  If you're looking for something more local; my mother didn't want to go into the City and got good care from St Barnabas Medical Center.     Memorial Sloan Kettering now has a satellite office (exit 160) and that's a bit of a hike too for you, but still a potential option.   

As Tom pointed out, you're early into this and the most important thing you will need to learn after the biopsy, if it's lung cancer, to find out specifically what type of lung cancer you have.  There are many types that can only be identified by biomarker testing (also called genetic testing and a number of others).  Once you have identified which type of lung cancer, then you can be matched with a doctor who specializes by sub-type, 

Like you I was a never smoker; my symptoms went misdiagnosed for a long time.   I have a genetic rearrangement called ALK, I see a physician in KC who specializes in never smoker lung cancers.  It's a shock to all of us because no one is looking for lung cancer in non-smokers.   The first few weeks are dizzying but things do settle down and you've now made a whole bunch of new friends that are here to help you get through these tough times. 

Michelle 

[Debbie M]

Wow, I feel like I hit the jackpot finding all of you on this forum.  I hope there is success in my treatments and that I’m able to pass along some valuable advice to others. 
 

debbie

[LA NYC]

Debbie,

Wishing you all the best on PET Scan. I’m so glad you reached out, as everyone here is so wonderful and they’re all giving you their experienced advice and knowledge. 
Rooting for you.

Best,

Lori

[Judy M2]

Hi Debbie, everyone has already given you great advice, so I'll just say welcome and try to breathe. A lung cancer diagnosis is usually a shock to everyone,  we've all experienced that. But there are so many treatment options today that weren't available 10 years ago. 

I'm from Rockland County, NY and now live in San Diego, CA. I'm a member of the 9/11 survivor community, having worked for years in Lower Manhattan before and after the event. I was diagnosed at Stage IIIB in October 2019, had chemo and radiation first, then started a targeted therapy in March 2020. Today I have No Evidence of Disease and am healthy again,  if you can believe it. 

Try not to worry about the radiation from scans, the scans are essential for both diagnosis and management of this disease. Between 30 radiation treatments to regular 3-month PET/CT scans, I should be glowing, lol. 

Please let us know what your next steps will be and try to stay away from Dr. Google! 

[Karen_L]

Hi Debbie, 

I’m a little late for the welcome wagon, but welcome nonetheless. I always joke that my goal is to get enough radiation to spontaneously glow in the dark. Now a year and a half into it, there’s no sign of my goal coming to fruition, but I have scans coming soon, so there’s always a chance. 

The only thing I will add to all the good advice you’ve gotten, and which I may have missed in my quick reading of posts, is that when the docs do a biopsy, be sure they send for genetic testing. Some lung cancer specialists are now advocating for a blood biopsy and a tissue biopsy. Tissue biopsy is the so-called gold standard, but a blood biopsy can help the docs start on your treatment plan faster. 

Hang in theRe. This is a hard, hard time but you can get through it. 

Karen