Just diagnosed

[hillham]

I was diagnosed April 26th, 2021, and it's still hard to believe that this is real. I thought I was so healthy. I'm 51, a regular runner, and feel healthy in every way. Even the oncologist said my lungs looked "pristine." I don't know much yet, but so far, there's something very tiny on my right lung, and involvement in the lymph nodes around my lungs. I went to the doctor because I was feeling the pressure of the lymph nodes. I thought it was related to Covid, but much to everyone's surprise the CT scan lead to a bronchoscopy, which led to the diagnosis of adenocarcinoma present in the enlarged lymph nodes. They are calling it Stage 3B. The doctors are testing for genetic markers, but they want to start with 6 weeks of radiation/chemo for what they are calling a "curative approach." They're calling the targeted therapies the "insurance" plan. I'm going for a second opinion before beginning. This is all so new and terrifying, but I'm trying to stay positive, not just for me but for my husband and teenage daughter. 

K

[Jennedy]

Welcome, although I'm sorry you have to be here. This is a great place. I was like you, very active (marathon walker), healthy, when I found a lump above my left collar bone. That lead to xrays, CT scans, broncoscopies and an eventual diagnosis of Stage IV adenocarcinoma, NSCLC. Turns out the pain my shoulder was cancer, not an issue with my neck. Sounds like maybe you are stage III. Did they do biomarker testing?? I'm assuming they did if they are talking about targeted therapies. Do you know those results? The "curative approach" sounds promising. I had 10 radiation treatments to my lung and shoulder while we waited for the results of the biomarker testing. It resulted in pneumonitis, but did shrink the tumor in the lung and shoulder. I had the EGFR mutation and was put on a targeted therapy, Tagrisso. But that never worked for me. I just finished up 4 rounds of chemo. What we refer to as the triplet- Carboplatin, Alimta and Keytruda. I have scans next week to determine the effectiveness of the treatment.

It's hard, but try to stay positive, for yourself and family. 

And ask any questions you might have. There are a lot of long-term survivors on here. And a lot of people have been through the treatments you will be getting and can help navigate the side effects.

Jenny

[LexieCat]

Hi there, and welcome from me, too!

I think a second opinion before starting treatment is never a bad idea. I don't have any targetable mutations, so I'll let those with more knowledge/experience comment on that. Have they given you a stage? Has there been any discussion of surgery?

Glad you found us, this is a great place for information and support. 

[Judy M2]

Hi Hillham, I am Stage 3b and have been where you are now. It's good you are getting biomarker testing so you'll know whether you have any targetable mutations. I went through the exact treatment plan your doctors are suggesting: 30x radiation and 6x carboplatin/taxol. From radiation I got a severe case of esophagitis that started about 10 days in and lasted for 5 months. (The lymph nodes being targeted were right on top of my esophagus.) I also had some serious complications from chemo or the steroid dexamethasone (no one can be sure which). My biomarker testing showed an EGFR mutation, which is very targetable, and I now take a pill (Tagrisso) every day.

I feel like my case, which you can read about in my introduction "My Story", was extreme, and not everyone goes through what I did. But even though chemo and radiation were very effective, I sometimes wish I had gone straight to targeted therapy instead. It's a big decision for you to make. I never got a second opinion from medical and radiation oncologists because I thought I had to rush into treatment. But to do it all over again, first I'd seek out another opinion from a comprehensive cancer center so I could make the most informed choice. In NYC you've got some great choices, so take the time to explore your options.

BTW, I'm a native NYer and worked in NYC for many years before moving out to Southern California. I do miss the city and all my friends back there. 

[hillham]

Thanks Judy. Sorry to hear about the pain you went through with the treatment. I have an appointment Tuesday for a second opinion at Columbia, but so far have been seen at NYU Langone. I noticed that you were part of the WTC 9/11 program. Is that right? I was also told to sign up for that as I lived in the area when it all happened. Thanks so much for your response!

[Judy M2]

Thanks. Glad you're going for the 2nd opinion.

I am enrolled in the 9/11 Victims Compensation Fund and will have my first interview with the WTC Health Program in a couple of weeks. Covid has significantly delayed care through the WTCHP. I strongly recommend enrolling, because your lung cancer, as well as 67 other diseases, is presumed to have been caused by 9/11 exposure (regardless of smoking history). If you visit www.post911attorneys.com, Barasch & McGarry has tons of information on how to enroll and file a claim. That firm was recommended to me by one of the attorneys I used to work for, and they've been great to deal with. They are very dedicated to their clients. 

In any event, even if you don't choose to enroll right away, please consider getting the required affidavits of presence signed by 2 people who had direct knowledge that you were present in the exposure zone on or after 9/11. As time goes by, it can be difficult to get in touch with people. 

There is another new member who was in the exposure zone post-9/11. Please feel free to PM me and I'd be happy to talk with you about this and also my treatment experiences.

[MBinOregon]

K,

I'm glad you're going for second opinion before starting the treatment.  Here's my 2 cents - IF you have a mutation that has available targeted therapies out there, there is no reason that you should start with chemo/rad first.  Your first line of treatment should be the targeted therapy.  In addition, depending on your insurance, they may deny to pay for the targeted therapy (mine was about $20k/month) once you start with chemo first.  

Keep us posted. You can do this!

MB

[hillham]

MB, that is not anything that had occurred to me, so thanks for pointing it out. I do not have the results yet for the mutations. Should come in any day from bloodwork, but I'm told they often have to "keep fishing." All they told me so far was that the PD-L1 was 100%, and so their big question was, Should we start with immunotherapy because this number is high?  The doctor's words were, "The tumor board decided in the end that we shouldn't attack a Stage 3 cancer with a Stage 4 therapy." 

It's all so confusing. 

K

 

 

[LexieCat]

That's pretty much what I wasn't sure of--the extent to which targeted therapy or immunotherapy could potentially be curative. 

There's no guarantee of a "cure" even with a so-called curative course of treatment and there are people here 15-20 years out from an advanced lung cancer diagnosis with no evidence of disease (one has even been pronounced "cured" 17 years later!). So yeah, pretty confusing and at this juncture, the best course of treatment is, to some extent, a guess. 

Have you discussed surgery at all? Some Stage III cancers are operable.

Even though I'm Stage IV, I have only one distant met--a tiny spot on my sacrum--so I was potentially a candidate for "curative" chemo/radiation, but due to the location of my tumor, every doctor I saw strongly advised against it. They felt that the radiation would damage my esophagus and give me a very poor quality of life.  

There's never any way  to be certain what's the best treatment. But at the very least I'd get a couple of opinions (as you are doing) and make a choice based on the likelihood of eliminating the cancer, quality of life, whether one course of treatment might rule out another down the line (e.g., once an area is radiated they don't like to do it again--sometimes they wait and hold that in reserve for "cleanup."

At least you are in a place with top-notch cancer treatment available. 

[Rower Michelle]

Hello K-

I am very sorry you find yourself here as well. I grew up across the river in Jersey.  Like you I was 51 at the time of my diagnosis, a competitive rower.   For months a increasingly worsening cough was misdiagnosed because no one suspected lung cancer.   
 

I was Stage IV with biomarker testing discovering the ALK mutation. About 90% of mutations are diagnosed at Stage IV.  Unfortunately there is little consensus on how to treat Stage IIIb, it’s rare.   The team is correct in holding immunotherapy until the biomarker panel is complete.  
 

If there is a mutation, the international lung cancer experts are at Mass General. My peer mentor was also diagnosed at Stage IIIb & she had three opinions.  Her treatment plan was unusual & successful.  She started with 8 weeks of targeted therapy to reduce the tumor, followed by Cisplatin & 30 days of radiation, then resumed targeted therapy.  Today she is in remission.    So essentially it’s the same approach the tumor board recommended for you.  
 

I had one round of chemo/immuno & taking targeted therapy for 30 months.    I am also considered to be No Evidence of Disease  

Its so hard to get your head wrapped around all of this in the beginning.  While there’s a sense of urgency, the waiting is absolutely the hardest part of the diagnostic process.  
 

Please feel free to ask us anything, it’s a great group of people here, committed to living our best lives.  
 

Michelle

[hillham]

Thanks to all for your kind and thoughtful responses. One thing the doctors said, which I thought was confusing, is that they don't see a tumor or mass. There is something very tiny that they were calling "schmutz" in my right lung. They aren't sure exactly where the cancer in the nodes originally came from, but do seem to understand without a doubt that it's adenocarcinoma lung. They even suggested that maybe I had a tumor that my immune system got rid of. Your responses have given me many good questions to take to the second opinion on Tuesday. Again, I'm very appreciative of your support.

K

 

[Judy M2]

Schmutz, such a NY term. You had a CT scan but no PET scan yet? Maybe ask about that too. Let us know how the 2nd opinion goes. 

[Rower Michelle]

Schmutz is the medical equivalent of ground glass opacity, a diffuse pattern that often obscures a tumor.  I had a 3cm tumor that was not visible on the x-Ray or CT scan.  This schmutz looks like snow or cotton on the scan.   
 

Another diagnostic procedure before the treatment plan can be finalized is also the brain MRI.  The MRI usually happens the same week as the PET scan.   
 

Good luck with the second opinion, we’re here for you.  

[Jesse L.]

Hello and welcome from me to the forums... after reading over all the submissions I get the feeling that while you are understanding your options, you just don't know which way would be the best to go...that is if you're given a choice. 

I'm not that far different from you; at least so far... After they discovered (and removed) two affected lymph nodes during my lobectomy to remove my RLL, I quickly went from a stage 1a to a stage 3a. Mind you it's all well and good to get second opinions, but know too that prescribed courses of treatments can be sometimes standard regardless of where you go. The reason for this is really academic in that statistically your medical team is looking for the best possible outcome with the least possible detrimental side effects to your body. Then too your team is always looking to make sure that there is a viable Plan A, then an alternative Plan B, and then an alternative Plan C, etc, etc. The reason for this is that not all treatments work for all people for one reason or another. From what I know, chemotherapy is harsh and can only be given for so long depending on the person and a person needs the right mutation to be even eligible for targeted therapy. And even if eligible, it may or may not work anyway due to bad side effects, allergic reaction, etc. And lastly, immunotherapies perhaps do work better for a person with a high PD-L1, but that is not always true either. All of this is meant for you to understand that some people are just more apt to respond to one treatment or another and there isn't really a guide as to what will work better for one person over another. Every cancer is different and every person's physical composition is different as well and that makes all the difference in what works good for one person and not another. 

Yes, you should get all the tests, CT scan, perhaps a PET scan, brain MRI, etc. but overall, you just have to wait for the best possible recommendations of your medical team based upon their best experience of what works. And once you get going on your treatment plan, whatever that is, you'll definitely feel better.

For now though be positive, stay strong for you and yours, ask all the questions you can, and learn all you can so you can be your best advocate. Take care and know you have our full support...

[hillham]

Thanks everyone,

I managed to have both the MRI and the PET scan one the same day last week. What a traumatic day that was. But the MRI didn't show anything, and the PET scan made them think it had started in the lungs and stayed in the lungs on the right side. It did show that a lymph node just above my right collar bone was affected. They saw the "schmutz" on the PET scan. Thanks for your explanation about that, Michelle! It does look like a patch of wispy little clouds high in the atmosphere!. Hard to believe it might contain something so evil as a tumor. And yes, schmutz is such a New York word. I grew up in out West, but have lived here now for 28 years and always enjoyed these little New York-isms. The doctors told me they thought since I am "young" and otherwise very healthy,  I might be able to tolerate the radiation/chemo without too much trouble. So terrifying. They do not think surgery is an option for me because of the location of the lymph nodes. What you say about each team trying to make the most logical decisions seems right. We go for the second opinion tomorrow morning, and I will update then. I do not have the results of the genetic testing yet. For now, thank you thank you thank you for taking the time to show concern about my situation! I can see that everyone is on one journey or another and trying to adapt to situations that are always changing. 

K

[Rower Michelle]

Good Morning, 

The second opinion may take more than one appointment depending on the results of the biomarker tests.  It is really the keystone for determining the most effective treatment plan.  In a sense, you already may have one biomarker per se-with PDL being 100% it's the perfect target for immunotherapy post chemo/radiation.  PDL is part of the immune system, however and this is where it gets tricky, it is possible to have 100% PDL and have another biomarker such as ALK or EGFR.   If another biomarker is discovered in the results (also called the panel), then immunotherapy isn't effective.  Research will ultimately help us understand why. 

If you were writing this post five to ten years ago, the treatment options would have been limited.  Now, there have been more scientific advances in the last three years than in the last fifty.   If you're into YouTube, that can be a little bit of the Wild West with conflicting information.  The Go2Foundation has an excellent series called "The Lung Cancer Living Room".  Those are very reliable talks from the nation's leading physician researchers.   

Keep us posted!

Michelle 

[Tom Galli]

hillman,

I am the 17-year guy Lexie mentioned who was recently pronounced “cured”. III B was my diagnosis, but I progressed to stage IV after my first of 5 progressions. I’ve had every form of treatment but immunotherapy. I had a targeted therapy drug Tarceva before doctors knew it only worked for a very small percentage of adenocarcinoma patients. This treatment was well before biomarker testing was perfected. 

My experience suggests that attitude counts. Furthermore, you should learn about our disease. Lung cancer 101, on the LUNGevity Foundation website, (LUNGevity.org) is a good place to start. Last and most important, if I can live, so can you!

Stay the course. 

Tom

[hillham]

Thanks Tom! I'm so happy for you, and I really appreciate the words of advice and encouragement. I want to be around for a LONG time, as we all do! I'll start reading Lung Cancer 101. I'm learning so much every day but really don't know much at all.

I'll keep you posted! K

[hillham]

Wow, I am having a really hard time today. One day I tell myself to stay positive and take things day to day, but a lot of things are starting to sink in, and I'm feeling pretty fragile. Had to run out of work early not to sob in front of too many people!

Yesterday we went to a second opinion at Columbia. The doctors were so impressive (I feel so lucky on that front so far). They thought that beginning with the radiation + chemo for six weeks was a sound plan, and offered the highest percent chance of "cure." I know that's a touchy word. They also wanted very much to know the results of the gene-mutation tests, which won't come until Monday the 10th of May. It sounds like targeted therapy is what everyone is excited about, but it also sounds like it isn't "approved" for Stage 3b patients, and so it would have to be a clinical trial. Then I got to thinking that if I'm lucky enough to have clean scans after 6 weeks of this treatment, what kind of drug do they give me then? And what if I don't have any of these "magical" mutations at all? Will there be treatment for me? I felt like I started to stare right down at death's door in my mind, and I know I can't go there at this point.  

Columbia also wanted to rule out surgery. They thought one of the nodes up by my collar bone might not be "hot" and are presenting my case to their tumor board on Thursday. My oncologist at NYU feels sure that surgery is not an option. I have a video appointment with him in 30 minutes. Maybe this post has helped me formulate some questions. 

Thanks for listening! 

 

[Judy M2]

It is NOT true that targeted therapy isn't approved for Stage IIIB, because I take it. It is very expensive, so your oncologist may have to do battle with your insurance company. 

Surgery also wasn't an option for me. I did not have "clean" scans after 6 weeks of chemo/radiation but rather slow improvements and  "continuing positive treatment response". I still am not NED after 14 months but have been stable and improving. It has been a long road for me but all the treatments seem to have been effective. 

Many members here don't have targetable mutations and are living with lung cancer as a chronic illness, not a death sentence. This is all new to you and believe me, we've all had your reaction. It's a tough disease to play chess with but there are new treatments all the time. Once you know if there are any mutations and you've gotten your treatment plan, you'll know your path forward. But don't hesitate to question everything along the way. 

[AleHondaa]

Hello, I’m pretty late I see but I figured I’d chime in as well and say welcome. I’m 22 years old and I was diagnosed about 2 months ago with similar situation to yours except mine gave me issues with my back and neck. I have a mutation called Her-2 which is a rare mutation found in Lung cancer but common in breast. There’s no known trials for it as of right now unfortunately. As someone as young as I am I just thought it was me pulling a muscle or straining something, but unfortunately that’s wasn’t the case. I did 10 days of radiation and now I just started my first infusion of chemo last Friday. It sucks but these folks on the forums have gotten me through a lot and have informed me with so much information it’s crazy. Stay through the fight and you’ll get through this hurdle. 

[LexieCat]

Yup, I'm another one without any targetable mutations. Chemo/immunotherapy worked great for me initially, but as so often happens my cancer eventually became resistant to the drugs and started to progress. I'm starting a clinical trial this week--my doctor says there are literally hundreds for which I might be eligible. No guarantee this treatment will be successful, but if not, there are other trials/treatments. 

One other thing re medication costs. The drug companies generally provide financial assistance for patients who otherwise couldn't afford the drugs. But first you gotta get the results of that molecular testing. 

Hang in there. This diagnostic testing and waiting for results is one of the hardest parts of this whole deal.

[hillham]

Lexi, I'm wishing you well with this trial. Thanks so much everyone for sharing all this information. It really means a lot to me. AleHondaa, you sound like a very strong young woman. Good luck to you. I'll look to you all for inspiration. I feel like such a newbie. 

The doctors want to start me on four rounds of pemetrexed and Cispladin once every three weeks, and radiation every day for six weeks. That's where we stand now. The bio results from the bloodwork should be ready on Monday. 

[hillham]

My doctor just called and told me that my biomarker results have come back and that I have the ROS-1 fusion mutation. He seemed very happy about this. He still thinks I should start on the chemo/radiation, since I'm stage 3, but we have another opinion tomorrow at Sloan Kettering. My head is spinning again!

[Rower Michelle]

Well that is really great news!  The targeted therapy for ROS1 is very effective, there are survivors who have been in treatment for years now.   You may want to check out the ROS1ders on Facebook where there will be a lot of great information to help you prepare for the appointment at Sloan.