NSCLC STAGE 1B need opinions n support prior to 2nd onc opinion
I recently joined the group and enjoy reading and learning from some of you. I am 60 yrs old and in good health other than Stage 1B NSCLC squamos cell. I had a 4.3 cm tumor with left lung lobectomy and lymphadenectomy in Nov. Ended up stage p2a NO MO with clear margins, moderately differentiated, spiculated egdes and minimal visceral invasion. However, no biomarker/genetic testing was done at the time. Ive researched extensively about nsclc, treatments, clinical trials, pathology, nutrition and more. Yet Im seeing another onc. for a 2nd opinion next week and Im requesting genetic testing and an indepth explanation of my cancer and info. on the most current treatment he can offer other than CHEMO. Im treating at the Cleveland Clnic and he is a very prominent onc. So yeah, Ive researched extensively but dont know all of course.and I guess Im afraid of what he will say. So, Im looking for people who have opted NOT to do adjuvant chemo and were also concerned about the risk vs. benefits for 1B Stage, receiving chemo. This is a grey area and Ive learned there are a few previous studies done on the benefit of adjuvant chemo for stage 1b and have proven to be ineffective for 1a and for most 1b. There is also a focus and clinical trials here and in other countries on using targeted or immunotherapy in early stage nscl. It comes down to your genetics and markers also. I have changed my lifestyle with excellent diet, supplements and exercise and have quit smoking and alcohol. Its sort of a crap shoot but the odds are more in my favor. So if and when I relapse I can be immediately treated by a targeted or immuno therapy that would best match my dna since its been tested and not genetically changed by prior chemo or radio. I know its also a personal and individual decision but wondering how any of you with stage 1b arrived at your decision and any professionals reading, if you would care to share. Thanks so much for reading and sharing anything you can. Stay as healthy as possible!
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My husband had stage 3b squamous non small cell LC
My husband had stage 3b squamous non small cell LC. He had radation and chemo (cisplatin and etoposide) and 8 months after treatment started he was declared NED - no evidence of disease. His tumour was 7 cm across and 2 lympth nodes were involded
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I have/had STAGE IV SCC NSCLC with 8 tumors, all 9mm or smaller, spread throughout both lungs.
I received 4 cycles of Taxol and carboplatin as chemotherapy, along with Keytruda immunotherapy last fall. Chemo was complete in December and I continue on Keytruda (3 week cycle).
By the end of chemotherapy, all but 4 of the tumors had disappeared and the remaining 4 were no longer active and showed signs of breaking apart. As of June 1st, the PET/CT showed NED.
My only lasting side effects are neuropathy in the right pinky toe, the toe next to it and that part of the ball of my foot, as well as daily tiredness that hits me after being up for 6-8 hours. A 30-60 minute nap and I feel fine.
I'd be happy to PM with your son if he likes.
Stay positive!
Tony
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I was diagnosed with stage 1B and had upper right lobectomy in December 2022. I am receiving followup CT scans on a schedule of 3 mo 6 mo. Then annual as long as clear results. So far so good. This is to determine whethor or not anything was missed or has metastized or returned. My understanding is adenocarcinoma has a longer doubling time of approx one year and testing is to catch it as early as possible. So nothing expected with earliest tests. Most metastitsis, from my research, shows up around 19 months.
My doctor/surgeon told me that "surgery is the cure." This is true for early lung cancer that is limited to one lobe. The lobe removal removes all activity of cancer. I did have 18 nearby lymph nodes removed and checked and no spread was diagnosed. Of course one can be "cured" and it can return is my concern. I also wondered about chemo or not. It appears not necessary and now I know I would NOT do it. I certainly wouldn't want an unnecessary chemo treatment to interfere with a future chemo treatment of if/when the lung cancer returns.
I do think it might be valueable to understand or document your individual genetics or markers... but I don't think adjuvant therapy is necessary and I would not do a round of chemo if there was no presence of metastasis or spread.
Good luck and check back in with your progress!
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Sharon,
The first 2 posts in this thread are from 2018. I was responding to "churtt" about someone "meeting" her son that has the same diagnosis he has. I thought she might mean the SCC type nsclc. Her post and ours are the only current posts.
FYI, adjuvant chemotherapy isn't called for in Stages 1A - 2A since resection can clear the cancer from the body completely. Even if an oncologist recommended it, I bet it would be hard to get the insurance company to authorize it, since it is not IAW established protocol.
If the patient develops cancer afterward, it is treated as a new primary cancer and all available treatments can be considered.
I see yours was adeno type. Did they do genetic and biomarker testing on it?
I pray you have nothing but negative CT scan results. "Negative" meaning good, NED!
Stay positive!
Tony
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Hi
I’m new to this board, but I have been an active member of the Uterine board…..and sometimes the Ovarian board, for 3 years.
Just last week I had a needle biopsy of a small tumor in my right middle lobe. No, not metastasis of my original cancer…..but, oh, goodie…a whole new one. Pathology: adenocarcinoma, primary lung. We are in total shock. My husband and I have spent 2 1/2 years living with keeping that first cancer from coming back. No one was monitoring my lungs, it was caught accidentally on an unrelated CT. We have an appointment with MD Anderson surgeon in the morning. We are hoping it’s very early, with no metastasis.
My Point: I’ve been through chemo and it was beyond horrible. The only way I would ever agree to it again is if someone could convince me that I would die without it. Period. We believe that 3 years of me being totally compromised…with chemo and then 2 years of Zejula to prevent recurrence, brought this on. A new primary cancer? You’ve got to be kidding. Yes, I’m a lifelong smoker, but a very light smoker and there is NO cancer in my family going back many generations. And this (or these) tumor is way out on the periphery, NOT where smokers get cancer.
So…..do chemo or not? I say “buyer beware.” I HAD to do it the first time…no choice. But I’m giving you a warning no one bothered to give me…..there can be really bad consequences. My research tells me 1 of 6 cancer patients develops a new primary cancer. What can be one of the reasons? Treatments for the first cancer.
I wish y’all the best of luck.
A
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tbg,
Are you going to have a PET scan to ensure it hasn't spread?
If there is no metastasis, surgery should be the only treatment you need, as long as they get it all.
As far as treatment for one type of cancer causing another, I'm sure it is possible considering the depleted state we are left in during and after treatment. It could also be environmental. You probably still live in the same house, much less area you lived in before your initial diagnosis. DNA analysis can indicate if you are more susceptible to certain cancers than the general population.
As far as treatments, I would take chemo over any other, and for the lungs, surgery over radiation. I have damage from the radiotherapy to my neck that will never go away. I've been through chemo for SCC NSCLC and continue with immunotherapy with no lingering side effects, other than tiredness which carried over from the radiotherapy.
Good luck!
Tony
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Thank you, Tony. We live in the same house, but it was brand new when we moved in in 2017. The GYN/ONC did pretty extensive genetic testing and I had none of those genes. There’s NO cancer in my family, on either side, going back 4+ generations.
I wish I could be optimistic, but right now I’m more mad than I have been previously. The surgeon had only read my reports..which were astonishing in their dearth of information…and had not looked at any scans….so, basically knew nothing. I knew more than he did. I SAW the scan at the biopsy. And that radiologist SHOWED me where it was in the periphery. SHOWED me that it was next to, but did not involve the pleura. I KNOW where he went into my chest and I SAW the position of the needle. This surgeon questioned why I kept saying periphery. He drew a picture of the middle lobe showing it the center of the chest….No extension towards the periphery. I’ve seen 3,000 pictures online of drawings of the lobes. There IS a periphery! There are numerous research articles investigating variables associated with either “central” or “ periphery “ tumor locations, including in the middle lobe! So, WHAT is he talking about??
And then he wanted to look at my scar from my open heart surgery. I chose to have a right thoracotomy to replace my mitral valve. He says, “Oh, I can’t do a VATS. You’ll have to have a thoracotomy.” Said there would be too much scar tissue. I’ve looked at those pictures online, also, of locations of VATS incisions and I don’t see how my scar would interfere.
Says oh…yeah…if 2 masses in that same spot, you’ll need chemo. I said, “No, not doing that.” I’m guessing you’re a man, Tony. Maybe hair loss is not important to you. This blonde girl has long beautiful hair that I just spent 1 1/2 years getting back. And I never want to be as sick as I was with chemo the first time. Then he throws it out there….”Maybe you’ll just need radiation and that’s all.” Again….,WHAT?
I had higher expectations for MD Anderson. In one visit this guy has shown me that I can’t trust him to be prepared. He was certainly not prepared today. And trust a guy to open my chest who seems to think my middle lobe is in a different place than the rest of the world? My PCP made a special referral to a personal friend at that MD Anderson location. I was told she was a “metastatic” person. Regardless, I need to let my PCP know who they hooked me up with today.
I’m glad you have made it through your treatments. And just mostly deal with fatigue! It’s all so hard.bAnd I’m so sick of it.
I’ll let you know what’s next. He’s ordering PET, MRI, and bronchoscopy. PET set up for next week.
Have a good evening,
A
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LBG,
What type of cancer did the biopsy show? Did you say you have 2 masses in the periphery of the RML? I don't believe 2 masses in the same lobe elevates the stage unless they exceed 3-4cm, though I'd have to go back through the guidelines.
I would think surgery would be the first line treatment, as long as it is not metastasis from your earlier cancer. In stage 1-2A, radiation and/or chemo is usually used to reduce the size of the tumor to alleviate symptoms or to make surgery easier. It sounds like the surgeon was thinking periphery of the lung while you are talking lobe. But yeah, he can't really believe a lung, much less a lobe, is in the middle of the chest. Like you said, I'm surprised this would come from someone at MD Anderson. Was your consult with them a second opinion? If not, I'd seek one out and change teams. You have to trust in your care team!
I understand your feelings about chemo. It hits some folks really hard. I didn't have any problem with nausea, but needed oxycodone to get me through the regimen. And I did lose my hair, which my wife liked. Especially when it started growing back in. She liked to rub the fuzz. One positive side effect, my hair grew back wavy, where it had been straight my whole life. And after the radiotherapy I had for throat cancer and what it left me with, I would be hard pressed to have it done on my lungs.
Have you seen a pulmonologist yet. I would think you'll need a Pulmonary Function Test. It's non-invasive, painless and only takes a couple of minutes. They just have you sit and blow into a tube.
Good luck!
Stay positive! Tony
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Hi, Tony
Thanks for writing back!
(When I first began here my screen name was my first name and I signed my posts with it. After I realized how public these posts are, I changed it and started using just the initial. My name is unusual and I was interested in protecting some semblance of privacy! So, please don’t be offended that I don’t use it!)
At 8:01 this morning I was on the phone with my “team” girl. I was very prepared to voice my concerns and get answers. My PCP’s friend IS on my team (she’s the diagnostician), but she’s out of town and asked surgeon to meet with me. He is a cardiovascular thoracic oncology surgeon. He did not have access to my scans….they are set to arrive today, along with biopsy specimens. My girl apologized profusely. I asked her about scheduling of bloodwork and PET on 2 successive days next week and asked for that to be changed. Yes, he ordered PFT and within 15 minutes of our call I received a call asking me if I could come this afternoon for the test.
I told her that I had to fight like a dog every step of the way for treatment of my other cancer and was “hoping for a much better experience with MD Anderson.” MDA was my first choice, and first opinion. Looks like they’re going to step it up now.
The biopsy reported “adenocarcinoma, primary lung.” They performed 3 stains to specifically determine that it was a primary cancer, not a metastasis of my Fallopian tube. One of the things the surgeon said yesterday that infuriated me was wondering about or making sure this was not a metastasis. Those results of those 3 stains were on the pathology report…..in acronyms of course, but I looked them up! I KNEW it was definitely not metastasis, but why didn’t he?? Good grief.
Yes, I have read that 2 nodules (the one they got biopsy 2.6cm x 1.2cm. …the other one they said was too small was 2.4cm x .9cm. I guess they have to be over 1cm on two dimensions). ….I guess even in same segment? …in one lobe? , 5cm or less = Stage II. I think that’s stupid, but they didn’t ask me! I desperately hope this is something surgery can remove….especially since they are right there together, and then I’m done. Oh…I said I spent 1 1/2 yrs getting my hair back….a typo! It’s been 2 1/2 yrs! I know that monitoring for recurrence with lung cancer is better than my GYN cancer. So, my feeling is…..take it out…monitor….if it pops up again we should catch it quick…if necessary, do chemo THEN.
The chemo was horrible for many reasons, but one of the worst was its destruction of my stomach lining….which I now know is made up of fast growing cells, like hair follicle & cancer cells. So, food not passing through in a timely fashion, acid accumulating, violent vomiting in the middle of the night. One night at 2:15 am I was on our back porch and didn’t quite make it to the grass. Next morning we discovered the concrete was etched. Acid powerful enough to damage cement. You can imagine what my esophagus, throat, and mouth thought.
That’s funny about rubbing the fuzzy! I did cold capping, so lost about 40-50% of my hair, but not all. I have a gorgeous collection of hats. Now, I’m lazy (don’t have “to fix” my hair) and never leave the house without one! And apparently look very good in them…..strangers stop me all the time to give compliments! Funny….they think I’m very stylish..”You’re rockin’ that hat!”….but I know that’s not it! 🤣
I’ll keep you posted!
😎, A
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Hello again,
I'm so glad you are getting a better feeling for the folks at MD Anderson. I get my care through the much maligned VA. The medical center here in Nashville has been really good to me. I have used the facility in Loma Linda, CA, and Las Vegas as well over the years. I wouldn't cast shade on those facilities/people either, but Nashville is even better.
It does sound like your cancer will be staged at stage 1 or 2. I'm not sure how they stage a cancer with 2 lesions/clusters in the same lobe. But with either stage, surgery should be the first line treatment. Are you aware of the levels of resection? They can take a "wedge" out of the lobe, remove one to four portions of a lobe of the lung while preserving the remaining portion (segmentectomy), take the entire lobe (lobectomy) or the whole lung (pneumonectomy). The protocol is to have the surgery and then monitor with chest CT's every 3-6 months for 2 years, then annually thereafter.
About chemo, the damage to the digestive track is caused directly by the chemo agents. Cancer cells grow fast, like you said, and the chemo targets fast growing cells. So, we develop side effects from skin problems to the more serious digestive problems. Squamous cell carcinoma, what I had, is actually a skin cell, so chemo to address it does cause digestive problems in most people. I seem to have a hardened digestive track from years of abuse. The chemo I received was on a 3 week cycle and when I finished, my hair started growing back in 3-4 weeks after my last infusion. I too liked the convenience of a bald head. I used to keep the sides cut close and only had the top a long enough to part, but right now I want to see how long it will hold the newfound semi-curl.
Keep on "rocking' them hats" and...
Stay positive! Tony
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Thanks, Tony!
Update: Wow! My conversation had more of an impact than I could have hoped! By the end of the day I had done my PFT and had appointments on My Chart for bronchoscopy consult, the procedure, and a consultation meeting with the diagnostician (my PCP’s friend!). I’m disappointed that the bronchoscopy isn’t until Aug 3rd, but it’s on a calendar! Hopefully that last consult will be the “This is our treatment plan” meeting. And we can schedule surgery.
For some reason a little bit of peace has come over me today. Don’t know why. I’m very intuitive about things, so I take it as a good sign that we’ll be alright. My husband’s great about being up for road trips! We’d love to go somewhere to escape the heat, but don’t have time for a CO run! So, this evening we’ve decided on a trip to the Fort Worth Stockyards. Give us a much needed break from reality! We love being there! Now…..I gotta tell ya…about my favorite US city is Nashville! I love Nashville!! But y’all don’t parade longhorns down main street twice a day, do ya? Hahahaha! I’ve bought many of my favorite hats on Broadway!
Have a great night!
A
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P.S.
Before I made hotel reservations I thought I better check the FW weather forecast….guessing it might be even worse than here. So, next week highs 105-107. Have to pick different destination!
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No bulls, just party buses and endless bachelorette parties. I visited the FW Stockyards back in 1979 or '80 and spent the evening in Billy Bob's. I don't think it had been open more than a year or 2. It was impressive.
I'm glad Nashville is thriving as a vacation destination, but miss the old Broadway. Somewhat seedy, but fun. Every honky tonk had someone impressive playing. Some famous, some not yet known. Now you have to elbow your way down the street and everyone charges a cover.
I'm glad things have started rolling for you. I'm on another support website and have found people seem to settle down once they have a plan. It is tough when you first get the news you have or may have cancer and then have to wait for the scans and tests before you have a diagnosis and treatment plan. I remind patients to worry about today. Do what you can and then let it go. You aren't going to accomplish anything by dwelling on "what if's" or worrying. You aren't going to be taken by cancer anytime soon. You are ok today, be happy with that.
As a wise person once said, "Worrying is like a rocking chair, it gives you something to do, but it doesn’t get you anywhere." Erma Bombeck
Stay positive!
Tony
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Hey, Tony!
I’m trying to stay positive, but as you know, some days are harder than others. I had that sense of peace that one day and then yesterday either cried or felt like crying all day. It occurred to me….now the shock is wearing off….so now sadness. My husband is such a saint.,I try to curb my distress to keep from making it worse for him. Decades ago I wondered which was worse, patient or caregiver? It didn’t take much experience to decide…at least for me…being the caregiver is much tougher. It will be better when we have a plan. Oh…as to the wedge,segment..etc., we’ll see what they say, but research tells me PFS and OS rates are better with segment or lobe removal compared to a wedge. Despite my rocky start, I do believe that I’m in about the best hands with MDA as I could possibly be. In 2020 I didn’t pursue MDA for a couple of reasons, but one was that we live 60 miles away from downtown Houston, so that seemed daunting. Now they just opened a fabulous new center in The Woodlands and we can be there in 30-45 minutes. They do everything there…all testing, even the EBUS, so the only thing we’d have to go downtown for is surgery. The guy that did my PFT could not have been better at his job! So, I’m encouraged!
Hah! I didn’t know Nashville had become the bachelorette party capital of the country until a few years ago! We were in Honky Tonk Central at 10:30 am and the streets and party busses were full of drunk bridesmaids! Who knew! A sea of cheap pink cowboy hats! Hysterical!
New plan…Red River NM for a week! (In between tests!) Forecast? Highs in low-mid 70’s and lows in the 40’s!! Hotel next to the river….hoping the sound of that water will calm me right down! I’m always able to put worries aside and enjoy things when we OOT. We traveled several times between surgeries & treatment in 2020 and it really helped!
Have a great weekend. Thanks for responding & helping out!
😎, A
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