44 yr old mom of 3, non-smoker, doctors believe I have a 16 mmx12 mm adenocarcinoma in situ, told to wait 3 mos for next CT

[LJH]

Hello Lungevity Community, 

I am happy to find a support site like this. I am hoping someone out there can provide me a bit of guidance. 

My lung nodule was found incidentally on a Calcium CT scan for my heart (I have a minor heart condition but nodules were a complete shock as a non-smoker). I have a 16 mm x 12 mm part-solid (5 mm solid center) nodule located in the RLL. Also, a cluster of tiny 5mm or under nodules at the base of the RLL.  I am a 44 year old married mom of three beautiful children ages 12, 10 and 8 who are my WORLD.

Once my cardiologist confirmed the findings, I sought out the pulmonary specialists at the Fred Hutchinson Cancer Center (formerly Seattle Cancer Care Alliance) through the Early Detection Lung Cancer Screening Clinic as luckily have PPO insurance and don't need my PCP to push this through. Once through the gatekeeper, I was scheduled a second CT (only three weeks before the first) and consult with the pulmonologist and ARNP. The second scan confirmed the findings and everything remained unchanged.

At my appointment on Oct. 12, my pulmonologist and nurse told me a whole team of specialists looked at my scans, reviewed my health and risk history together and came to the determination that the nodule is highly suspicious for adenocarcinoma in situ. Due to the difficulty in obtaining a biopsy and my low risk profile, they determined they want to wait another 3 months to schedule another CT and see if the nodule changes. Apparently, the nodule is located right in the center of my RLL next to an airway. They told me a navigational biopsy will be the next step if the nodule is still the same size or larger at the next scan but that it will be a difficult biopsy. She also informed me they will have to take quite a bit of lung with a lobectomy if it's cancer. She said it was a pretty aggressive biopsy and surgery for someone like me so that's why they want to wait and be sure. However, when I asked pointed blank if they thought it was cancer versus something benign and she told me yes, they believe it is cancer. 

I am beyond anxious waiting three months for another scan when it seems they're certain it's already malignant. I asked if it could spread in that time frame but she said no, that it is likely slow growing and not to worry but I can't help but worry. I've had a chronic, mild sore throat - on my right side only - for many months now. I told them this but it was kind of glossed over. Is a sore throat never a symptom of lung cancer? 

Upon leaving, they told me they were sure I would have questions and to reach out with any. I haven't yet, but I do intend to. I am hoping this community can help guide me. My big question is, can I tell them I am so nervous and remind them of my right side sore throat and ask if there is anything else they can do now?? Why can't they schedule a PET scan? Wouldn't cancer definitively light up on the PET and confirm their suspicion without having to wait three more months? Or is this all standard protocol that they HAVE to go through because of the size of the nodule and my low-risk profile...and maybe it's an insurance thing? 

I KNOW I have to be my own advocate. I just want to make sure I ask the right questions. 

I am so grateful for any advice or support you all can offer!! 

 

[LouT]

LJH,

Welcome to our forums.  Sorry you need to be here, but glad you found us.  Like you my tumor was discovered during a scan for a different reason.  Not all nodules are malignant, but based on what you're saying and what the doctors have discussed it may well be in need of removal.  You didn't say anything about any mets outside the lung and that will prove to be a good thing going forward.  But let me get something off the table for you; you don't need to be a smoker to get lung cancer, you just need a set of lungs.  You'll hear from other non-smokers in the near future on that topic.

Waiting a bit to improve biopsy opportunity is not unusual and, like you, I had to wait three months between the initial sighting to the second set of tests that ultimately led to an inconclusive PET Scan and failed CT Scan.  Finally a surgeon had to go in, perform a wedge biopsy.  At that point they tested the tissue and found it to be malignant so they did a right-lower lobectomy.  That was back in 2019 and as of my most recent scans I'm NED (no evidence of disease).  That is to say that with today's treatments lung cancer is no longer the automatic death sentence that it once was.  So, there is more hope now for those of us diagnosed with this disease than ever before. 

You ask why they are waiting for a second set of scans...  The answer is that most nodules are benign (~60%) so they will do what they can to confirm as best they can that further intervention is necessary.  Also, there are many situations here where folks were misdiagnosed before a LC diagnosis was made.

You are still in the diagnostic process so I'll share some good information from our Lung Cancer 101 forums titled "Diagnosing Lung Cancer".  It can be found here.  While they are doing tests please ensure you request that they include biomarkers as that information can be very useful later on.

In addition there is a great piece titled "10 Steps to Surviving Lung Cancer; from a Survivor and it can be found on this page.  This blog offers a lot of useful information and advice as you go through the process.

Please ask any questions you want and let us know how your continued testing goes.  You'll find a large group of folks here who can share their experiences and learnings with you and it's also a great place for support.

Lou

 

[Tom Galli]

LJH,

Welcome here. Lou's pointed you toward Lung Cancer 101 and I do recommend you read it.

But, temper your reading with this understanding: you may not have lung cancer. Lung nodules of the type you describe can be caused by other maladies. Here is my go to resource on lung nodules. You will note nodules occur for lots of reasons including infections, and your long tenured sore throat might be an infection indicator. Indeed, one of your physicians might put you on a board spectrum antibiotic to treat both the throat and perhaps irritation and inflammation in the lung that might be producing your nodules.

Why can't they perform a PET scan? PET scans are not normally reliable indicators of metastatic activity for nodules. PET results at this juncture might just confuse the diagnostic process. We are looking for certainty and certainty for lung cancer only results from a biopsy. A 16mm nodule should be a large enough target for a needle biopsy, but why risk an interventional procedure until other non-interventional means play out. In your case, that is a repeat CT. If the next CT shows no growth in the nodules, you should begin to relax. Then you are likely be put on a scheduled scan to ensure stability. I know, the wait and not knowing are maddening! Believe me, we've all been there. But, I am really hoping your nodules are not lung cancer.

If they are, you'll benefit from an early find. Everything is confined to the right lung and its lower lobe. There are a whole range of curative procedures including surgery and precision radiation that could make your lung cancer treatment an inconvenient bump in your road of life.

You are right about asking questions and your ammunition for terribly perceptive questions is contained in Lung Cancer 101.

OBTW--I was fortunate to be stationed in Seattle two times during my Army career. I miss with a passion Ivar's Fish and Chips and Anthony's Home Port planked salmon.

Stay the course.

Tom

 

[LJH]

Lou and Tom,

My heartfelt thanks to you both for taking the time to read my "novel" and provide me with useful links that I will most certainly review, but also help to calm my fears a bit. As you know, a million things are racing through my head right now. Honestly, it's just good to talk to others who have been/are going through a similar experience. It's so difficult when you don't feel there is anybody to talk to about this journey. 

Side note to Tom - Our family has recently moved to the Greater Seattle area so I will have to look up Ivar's and Anthony's! 

Thanks again. 

[Justin1970]

Hi ljh

I'm sorry you are going through this I know that the waiting is difficult but you will find the strength to come through this I went through exactly the same feelings as you are last August and the waiting for treatment was terrible but it does get easier, take care Justin 

[LJH]

Thank you so much, Justin. That means so much! 

[LilyMir]

Hi LJH, so sorry you have to worry about a possible lung cancer diagnosis. Try your best to distract yourself from cancer thoughts until it is confirmed. I am not sure why they are not doing a PET, I know it is not always sufficient and can give false positives and false negatives but I think it is a necessary part of diagnosis.

16 by 12 mm is not small but is not huge either. Is it spiculated? Hopefully even if it turns out to be cancerous, it is a curable stage. Are you able to seek a second opinion to ensure doctors are making the right call to wait?

3 months is not too long of a period in any case (it is always risk vs. reward with this miserable disease) but I hope this ends very happily for you. As a mom of a 6 year old, I know the anguish and worry this must be generating but try to think positive until you know for sure. There is a light at the end of the tunnel, either way, hopefully.

[LJH]

Hi LilyMir, 

Thank you for your thoughtful reply. I see you are in Vancouver. Our family are dual citizens and just moved from Victoria, BC after 7.5 idyllic years on the island! Although we didn't move too far away (now living in the Greater Seattle area), Canada will always have my heart! 

The radiologists on both scans described the larger node as "indeterminate part-solid" as well as a cluster of smaller nodes at the base of the same lung. I am at least going to ask about the PET scan and see what they say. I do have faith that I am at a reputable cancer care facility with great doctors although it's still very early in this whole process so not ruling out second opinions at this point. 

Again, thank you for chiming in with your supportive comments. I'm so sorry for what you are going through as well. We are both moms of younger kids...the mental anguish is so hard. Sending lots of warm thoughts your way too, LilyMir.

[BridgetO]

Hi LJH,

My situation is also similar to yours in having a nodule discovered in a CT for something else and then waiting 3 months for a second scan. The second scan showed some growth. My nodule was in my RLL near the center and they deemed it impossible to biopsy except by a lobectomy (or at least no one in the medical group was willing to try it). My situation was different from yours in that my "something else" that the CT scan was for was for surveillance for possible metastases from a Stage 3 gynecologic cancer. They did a PET scan and nothing "lit up" at all, either in my lung or elsewhere. So I had an option of a lobectomy or waiting for another scan. My pulmonologist and surgeon thought that the nodule didn't look like a metastasis, but  that since it was spiculated , it could be a primary lung cancer. So I went ahead and had the lobectomy by VATS (video assisted). It was pretty easy as surgeries go. The nodule turned out to be an adenocarcinoma, stage 1a and I didn't need further treatment. I'm well today, with No Evidence of Disease (our friend NED). BTW, I'm 77 years old and still work  part time.

I hope that your nodule turns out to be benign, most nodules are. But if it doesn't, know that there is definitely life after lung cancer. I wish you all the best.

Bridget O

[LJH]

HI BridgetO,

Thank you for sharing your story with me! Yes, our situations do sound very similar. They told me that the nodule is right in the middle of my RLL next to an airway and the navigational bronchoscopy is going be very tricky (high risk) to perform and might not yield enough/any of the nodule to biopsy adequately. Hearing that is so daunting. If it comes to that, I'll likely opt for the surgery anyway as you did as the risk of leaving it there is greater than having the surgery. You definitely made the right choice but it's not an easy one to make considering it is major surgery. However, It is so inspiring to hear that you are NED after having the adenocarcinoma and Stage 3 gynecologic cancer! I'm so happy for you and the productive life you continue to live! 

[Karen_L]

Hi @LJH

The good news is that you're at one of the top cancer research centers in the country, and it wounds like they took your case to a tumor board to discuss. This is a good thing-- my radiologist says these discussions can be quite heated, but also very thorough. 

As you sit in anxiety, you might find it useful to watch this video about lung nodules. It's from a Lung Cancer Living Room run by the Go2 Foundation, formerly Adadario Foundation. Here's the description: 

Quote

Understanding Lung Nodules: Causes, Diagnosis, Monitoring and Treatments DR. ANTHONY LANFRANCO Director, Interventional Pulmonary Fellowship Program, Section of Interventional Pulmonology and Thoracic Oncology TERRI ANN DI JULIO Survivor, Advocate, GO2 Foundation NAC member

Link: 

 

[LJH]

Hi Karen_L,

Wow, was this video ever relevant and timely for me to watch. I watched it from start to finish and I feel like it confirmed a lot about what I've been learning and, of course, I gained even greater depth of knowledge on many topics such as the various types of biopsy and bronchoscopies performed. Thank you so much for sharing with me! It's reassuring to hear that you feel I am at one of the top cancer research centers in the US and having a nodule board discuss. I'm counting my blessings for this privilege.