New here....

[Livin Life]

Just want to introduce myself.  I'm still in differential for lung cancer diagnosis or whatever else this might be though told by local onc I likely have a slow growing lung cancer (assuming adenocarcinoma).  I have changes on HRCT scans from 2015 and 2016 (done for other lung issues) compared to low dose CT Sept and Dec 2023.  Pulm is from a large academic medical institution with NCI; local onc is from a small collaborative cancer center though not NCI.  If diagnosed I'll have the large academic NCI take the lead - they're 4 hours away.  No biopsy yet - I opted for rescan in early July 2024. Sept to Dec 2023 scans were fairly stable with multiple ground glass in all lobes with one solid and one that turn solid over these years.

I'm no stranger to lung cancer.  Lost my dad when he was 56 to lung cancer (likely adenocarcinoma); I was 13.  Lost my older sister to lung cancer (she was 48) in 2004 (assuming small cell - she was gone in three months) and my younger sister to lung cancer in 2019.  My younger sister had a rare neuroendocrine small cell lung cancer.  Anyways, I'm just trying to learn more - I'm a big fan of health forums.  I have many health issues, mostly due to autoimmune issues so frequent some health forums.

[LouT]

Welcome to our forums.  I'm sorry you need to be here but glad you found us.  We're a community made up of LC (Lung Cancer) survivors and some caregivers.  The stages, types, and treatments we've experienced are "all over the map" so you'll be able to ask most any question and find people with firsthand experience.  Like you most everyone in my family died of cancer.  My dad, mom, most of my uncles and aunts on my mother's side, and a step-sister, so like you I understand the situations reasonably well..  What I can tell you is that when my mom died from LC we didn't have many of the treatments and trials available today.  So you have the experiential knowledge but I think it's also good to learn all you can in an updated manner so I'm going to share some different information with you.

1. We have a section called "Lung Cancer 101".  It covers causes, diagnosis, treatments and all aspects of Lung Cancer it can be found here.
2. An important blog written by one of our senior member is titled "10 Steps to Surviving Lung Cancer; from a Survivor" it is on this page.  This member was originally diagnosed at Stage 3 then Stage 4 and after 20 years of treatment has been declared "cured".
3. A tip for you; stay away from Dr. Google.  Outcome statistics found there are normally over a 5-year period and don't accurately reflect new treatments available.  Neither do they consider the individuality of our situations.  You're always better sticking with your treatment team for that information.

Please stick around, update us as events unfold and ask any questions you may have.  We'll be here to support you.

Lou

[Livin Life]

Thanks so much for sharing some of your story and for the welcome, Lou!  Yes, to cancer all over the family.  I didn't mention my mom died (at 85) in 2011 of a primary brain tumor and my brother died of kidney cancer at age 53 in 2005.  My mom lived a week after diagnosis and my brother 3 or 4 months.  I actually have one sister left who is 70.  I am almost 62.  Yes to various cancers in the extended family too. 

Thanks for the resources.  I have been doing a lot of reading the last handful of months though due to other health issues I generally stick to medical articles, etc.  I have seen the timelines for life expectancy are way off so thank you for that reminder.  Because I am likely to have adenocarcinoma if diagnosed I am not too worried b/c of all I've read, including from survivors on some other sites.  I think back to my dad who was diagnosed in 1975 when there were few treatments.  They said he likely had lung cancer five years before diagnosed.  With surgery and Cobalt treatments back then he lived 2 years.  Blows my mind when I think about that so when I see all that is available today and how so many are doing I don't question that.  Though... I do see some who do not fare well or for long....  

I will check out the Lung Cancer 101 and blog before long.  Haven't been awake long and have to get ready for work here soon : )    Thanks again, Lou!

[edivebuddy]

Sounds like multi focal lung cancer.  Very slow growing.  Are you on inspire?  VanCoerte there has been dealing with this for a couple decades.  Like 4 wedge resections and 1 SBRT treatment over the years.  It's nearly impossible to biopsy a tumor with less than an 8 mm solid component.  They used to wait till it was 10 mm but many will try a biopsy now at 8.   There is of course a surgical biopsy but that's pretty extreme.

[Livin Life]

Thanks, edive!  I was on Inspire.... still active though haven't been on in some time.  I heard you were either here or another site now and hoped to "bump into" you : )   Yes, VanCoerte and I exchanged a few posts not long after I posted there for the first time.  I too wonder about multifocal.  I could have had biopsy after last scan.  One of my solid nodules is 11x8 mm.  A ground glass is 9x6 mm.  The one that turned solid was 8 mm in Sept 2023 and then 7 mm in Dec 2023 though such a small difference it could have actually not changed at all.  The others are around 6 mm with one being 4 mm. 

Sadly I heard nothing from my pulm who ordered these CT's.  I was to have a tele a couple weeks after the CT though they canceled and rescheduled for a few weeks after that which did not work for me.... etc. etc.  So when I saw my onc (for other reasons -more a rheumatic hematology issue at this point) late January I asked her about scans.  I had sent her the reports.  She let me know she believes likely a slow growing cancer.  I trust that even while I know a biopsy is the only way to really know.  That evening I then heard from pulm via the portal - over a month after my scan.  I think onc may have reached out to her.  Given all was stable she was ok with me waiting until July for rescan which is what I wanted.  It's 4 hours away and I just made 4 trips there in 4 months and did not want to drive again - I have other health issues and still work half time so.....  Given all I've read I feel pretty ok with waiting until July for rescan.  Need to get things in financial order too b/c I suspect they may want to do a resection as the biopsy which I've seen can result in a bigger surgery- thinking recovery time.  Where the solids are (two different lobes - both right lung) there is also ground glass in both of the lobes....  It's just me so I don't have anyone else to rely on so just in case.... I need to have my ducks in a row.  I don't worry a lot b/c I plan for what I can (then still worry some LOL).  Thanks again for your reply!

[edivebuddy]

I personally would feel comfortable waiting.  Strange about your pulmonologist.  You like a lifetime income stream 😁 ground glass is more likely to be malignant than a solid module. But a malignant solid module is way more dangerous.   In my opinion multivocal has a very good chance of being the first lung cancer with a cure.

 

A was having a problem with inspires AI pretending to have feelings.  When it says it understood I lost it considering the site says peer support from People like me.   Then the mod deleted a post and called me not supportive or nice.  That was definitely the straw.  They can keep their bot and definition of supportive. I will not aid in their success at the cost of my own  mental health.  Stress is bad. No point subjecting myself to more of it.

[Livin Life]

Thanks for your feedback on the solids and ground glass.  I really appreciate your knowledge and you've (unfortunately) had so much  experience.  I think it is the smaller of the solids they are most concerned about - it changed quite a bit from 2016 to 2023 though is stable now.  I guess I don't understand/know what you mean by solids being more dangerous even while the ground glass is more likely to be malignant.  I really asking more about the former ( solids being more dangerous).  Fortunately all of my nodules are small though there are like 7.  Interesting on the multifocal and cure....  I've found a couple good articles....

Oh, I didn't realize you leaving Inspire was about the AI.  I read those posts as several of you were going back and forth.  I think I only commented on that post once other than after you left - then there was stirring about where you were/what happened, etc.  I didn't realize that was the post that upset you - thought it was a different post though really didn't know.  Well, I'm glad you landed here.  Important you have a place to be AND others really benefit from your knowledge and experience!  I'll likely stay here - as I said I'm still listed as active on Inspire though haven't been on there for a bit.  When I'm posting a link to a very active and helpful disease community Inspire does NOT have (and a disease someone is struggling with) I should not be censored.  I was shocked to be honest.....  As I said I posted that link many times before on two other Inspire communities and no-one deleted anything until I posted it in the lung cancer community for a newbie with Sjogren's struggling with lung cancer treatment causing more severe dryness.  It was a real ethical dilemma for me... I'm a rule follower though I'm on these sites to be of help and support to others once I learn a thing or two : ) so to not share a very helpful reputable site when I know it exists blew me away.  I don't have much knowledge about lung cancer though I do in the other communities I was on there... and was often the first, sometimes the only, and often one of just three who responded to a newbie - I find this very sad though can't support that way of operating - it's not really about helping others then which is what I told the Mods... at least not as THE priority which is why I make such responses.  

Well, anyways, I'm glad I found this site.  I'm such a fan of these health sites and wasn't sure if there was another quite active community for lung cancer out there.  I'll have to spend some time learning my around the various posts, etc.  I think there's more than what I realized here regarding posts.... I'll check out those areas Lou mentioned too.    Thanks again, edive!              Livin

[Karen_L]

@Livin Life, I'm glad you found this site. It's been the most reputably helpful of the few I've found, as well as the most genuinely supportive. We have waves of activity, depending on who's checking in. 

I don't know much about what you're experiencing. I had ground glass after radiation therapy fried my tumor. It has gradually cleared as the severe inflammation from immunology-induced pneumonitis resolved but it was a very long haul. 

Keep us posted!

 

[edivebuddy]

Being lungivity let me go find a 20 year study of early detection references solid vs part solid 

[edivebuddy]

Still haven't found the study. Here's a story that referred to it.  Not a 20 year study had 100% survival in part solid tumor and only. Only 80% for solid tumors less than 1 cm  found with early screening.  Part solid tumors point to faster not necessarily fast growing tumors while part solid or ground glass nodules are associated with slow growth and longer term survival.

 

https://www.mountsinai.org/about/newsroom/2022/lung-cancer-screening-dramatically-increases-long-term-survival-rate

[edivebuddy]

https://pubs.rsna.org/doi/10.1148/radiol.231988

[Livin Life]

Thanks so much, Karen and edive!  I'll definitely keep you posted.  I'll check out these links later today, edive - thank you!

[Livin Life]

Those were very informative and helpful articles, edive.  Amazing on the rates of cure when LC is caught early.  Thanks for sending these links!  I appreciated the information you sent too, Lou... I looked at both areas this morning - thanks!

[LouT]

You're very welcome.  Knowledge is a blessing to us who suffer from this terrible disease.  I hope you'll stick around and get to know more of the good folks here.

Lou

[Livin Life]

I do plan on sticking around, Lou!  I'm a big fan of patient health forums.  I learned so much initially about my two autoimmune conditions and then joined other related and unrelated sites to give back at a later point.  As I said, I'm not actually diagnosed with lung cancer (yet) though local onc believes I have it.  Hoping July scan offers clarity - So whether as a patient or caregiver, given family cancer and deaths, I'm passionate about any kind of cancer.  This includes lung cancer forums more recently though long-term when it comes to my employment.....