Lung Nodules, GGO, Links, and Stage 1 NSCLC

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cbwriter
Lung Nodules, GGO, Links, and Stage 1 NSCLC

Hello - 

Would someone be able to direct me to the information here on CancerGrace where Dr. West or other doctors explain the protocol, followup, management, etc of lung nodules in general and also of GGO? 

I love the new forums but any time I click a link, 90 percent of the time I get a 404 error. Sorry for any inconvenience, but is there a place where the above information can be found? 

Lastly, is there any way to try and rid the body of GGOs or lung nodules that are being followed with low-dose quarterly CT scans? 

My spouse has had 3 nodules to date, all stage 1 adenocarcinoma/NSCLC, no lymph node involvement, all treated with SBRT at a National Cancer Institute Comprehensive Cancer Center. Our journey started in the fall of 2016 and has included a VATS surgery, CT scans, PET scans, bronchoscopies, several FNA ultrasound-guided biopsies, and two separate SBRT treatments consisting of 5 each. The incidents are all separate, not related, not metastatic, thank God. 

I have read about the indolent nature of these nodules, but in this day and age of so many amazing medical advancements, is all we can do sit back and wait and do a ct scan every 3 months? I am grateful and this has prevented my spouse's stage 1 NSCLC from advancing into something more. I feel helpless, as I am sure many can relate. I want to do something proactive. Is just watchful waiting and hoping for the best all we can do? My spouse exercises, eats right, does not smoke (quit in 1993). 

What is the most up to date information? I can find info from Dr. West from 2013 and 2014. Is there anything more current? 

Many kind thanks in advance. I am very grateful for anyone with the above information replying to me. 

Carol in Pennsylvania 

JanineT Forum M...
Hi Carol, Welcome to Grace. 

Hi Carol,  Good to see you.  I'm very sorry about what your spouse and you are going through.  I completely relate to the spouse position in all this.  My husband had unresectable stage 3B and after 7 years and no treatment, we like to say he's cured.  

 

If each one was biopsied and found adenocarcinoma then your spouse likely has AIS aka BAC.  Since they have had 3 incidences it's likely your spouse will have others and the goal is to preserve as much lung tissue as possible while keeping it at bay.  The great news is that it's not invasive the scary reality is there's a possibility that it will become invasive.  However, for many living with BAC is manageable and never becomes deadly.  Obviously if possible you'd want to remove it and be cured once and for all.  But, if cancer cells can find a place to hide it becomes a recurring issue.  This is where "watch and wait" and balancing treatment with hands-off approach come in to play.  A discussion with your spouse's oncologist can help you understand where they if on this spectrum. 

 

A second opinion from someone who specializes in AIS BAC is a good idea.  Most medical oncologists rarely see pure BAC.  They are used to treating nsclc as an aggressive disease and overtreat. A specialist can work with your spouse's home oncologist to help make decisions for management during decision-making times. 

 

Have you tried our search engine?  I'm sorry about the dead end links.  If they are going to be fixed we have to do them individually.  I've been spending more time bringing old articles over from our archives, mostly basic cancer info but I'll work on BAC articles next week.  If you know the name of articles or just have search terms pm me and I'll look in the archives.  You probably know Dr. West is a specialist on BAC and has been for many years so we have a lot of good material.  All the older articles are mostly relevant.  Keep in mind that some of the drugs have changed.  SRBT is a fairly new typical treatment for small tumors; where before you may not have used radiation if it meant sacrificing a lot of healthy lung tissue but the more recent use of SRBT means less tissue lost.  But the mantra of watch and wait is the same and balancing when to treat and when to watch something do mostly nothing is the same and is an art form. 

 

Living with the wait and watch approach is a lifelong change in the quality of hope.  

All best,

Janine

cbwriter
Followup question for Janine

Hi Janine,

Thanks for taking the time to write me. 

Would you be willing to clarify this: "The great news is that it's not invasive the scary reality is there's a possibility that it will become invasive.  However, for many living with BAC is manageable and never becomes deadly.  Obviously if possible you'd want to remove it and be cured once and for all.  But, if cancer cells can find a place to hide it becomes a recurring issue. "

She has dozens of small nodules, micronodules (deemed inflammatory), and a lot of GGOs. The reason they are not doing surgery is because there are so many and so as to preserve lung tissue. 

So my question is, why would the BAC become invasive if we are catching them early and doing SBRT on them? What would make BAC "become deadly" if we are keeping up with scans, bronchoscopy when needed, FNA ultrasound-guided biopsy when needed?

How does one find an oncologist for a second opinion who specializes in AIS BAC?

Thanks in advance.

Carol

JanineT Forum M...
Cancer can do anything.

 

I don't know if there's a good understanding of why BAC can change over time but like all cancers, it mutates to get around an obstacle like a cancer that mutates to get around a drug.  In the case of BAC it needs to become aggressive; nodules become more solid and/or begin to grow more rapidly. In short oncologists will tell you, ‘cancer can and will do anything’. n

 

Let me emphasize again,  only some pure BAC mutate into an aggressive (or more aggressive) form of nsclc.  While most BAC that is found early can be resected and cured sometimes surgery doesn’t remove all the cancer cells and BAC becomes a managed disease.  It takes careful balancing the waiting and taking action. 

 

 AIS or more often Dr. West refers to it as BAC (Bronchioloalveolar Carcinoma).  AIS or pure BAC is nsclc that's extremely indolent or slow growing and can be managed.  It sounds like your sp's onc is using a good watch and wait approach that is critical for managing AIS.  A 2nd op adds more eyes on the subject and boosts more satisfying treatment decisions. One of my favorite articles is Dr. Weiss' An Insider's Guide to the Second Opinion.  I couldn't find it a couple of months ago, all the links, 'surprise surprise' returned the broken link error. I found it and others in the archives and am moving them to the new site.  There are tons of old articles already on the new grace site but they have new url and filled with broken links. The ones with the “ARCHIVES” logo are the ones I’ve recently moved (the past month or so) and should have only good links.  A true problem that we address one at a time and as members request. TMI.

 

Does this help clear things up?  I'll be posting new old articles on BAC for the next couple of days and will past links to this thread. 

 

Janine

cbwriter
Thank you, Janine!

Janine - You are so incredibly kind. Thank you from the bottom of my heart. I appreciate you taking the time to write, explain, share the links, etc.

 

I am going to take some time to process this. My spouse starts SBRT in the next few weeks. After that, later this year, we plan to have another facility review her records and make an in-person appointment. The "Insider's Guide to the Second Opinion" link will help greatly with that decision.

 

Do you happen to know if Dr. West does phone consultations/email consultations to review records and films? 

 

Thanks a million for everything! <3

 

Carol

JanineT Forum M...
I'm happy to know I can help.

I'm happy to know I can help.  I don't know where City of Hope stands in telemedicine.  Call or email his office to get the latest.  He's just moved from Swedish to City of Hope in Duarte, CA.  The best time to see your second opinion doc is before the next line of treatment.  I know SBRT is much less damaging to surrounding tissue and may be just what they need but it would be worth getting a second pair of eyes on their situation.  With all the new options today someone who specializes in AIS or at least a lung cancer specialist may have ideas your spouse's doc hasn't thought about.  Take a read through the 2nd opinion article to see if it give y'all any new ideas.

 

You're a good spouse.  This is no small feat to wade through such complicated material.  Don't forget to care for yourself too.  :)

All the best,

Janine

cbwriter
Thank you from the bottom of my heart

Thanks again, Janine. This means a lot to me to have you there to ask questions. We see the radiation oncologist this week and the marking process will begin to prepare for the 5 SBRT treatments. I appreciate you and this forum.

 

Hugs of gratitude,

Carol

JanineT Forum M...
Carol, Good luck with the

Carol,

 

Good luck with the SBRT.  The process is quick and should be painless.  I hope they breeze through it and stay treatment free for a long long time.  Let us know if we can help and drop back in to let us know how things are going.  Thanks for the (((hugs)))!

 

Janine

JanineT Forum M...
This is a link to search

This is a link to search results using our search engine and "BAC" as the search term.  All the links in the search results should be good but the links in the articles are likely broken.  Let me know if this post isn't correct.