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New lung cancer questions


Minh

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Hello all,

I am just diagnosed with adenocarcinoma lung cancer stage 1?. I have a lung nodule on RLL that has grown from 10mm in Nov 28, 2018 to 16mm, Aug 27, 2021.  During this period, my local doctors claimed this nodule could be scar tissue, fungal, or some infections. Two weeks ago, I had my biopsied done at MD Anderson and also tested two lymph nodes at stations: 4L and 7. The pathologists have confirmed that the nodule is Lepidic Predominant Adenocarcinoma. And the two lymph nodes are not malignant. Yesterday August 10th,thoracic surgeon has asked me to comeback sooner for consultation but I chose to come back in Sept. 27th due to family logistics because I am out of town and don't live in Houston. They have already scheduled me for a FDG PET SCAN when I come back for surgeon appointment.  I don't understand why they already told me I am stage 1? (I don't remember stage 1a or 1b) and now they want me to do the FDG PET SCAN? They have already done the CT scan and biopsy of the nodule and lymph nodes.  The CT scan said I don't have any node involvement. Could some one help explain why would they want to do the FDG PET SCAN now? Shouldn't they have done the FDG PET SCAN at the same time or immediately after the initial CT scan and biopsy? 

Thank you,

Minh

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Hi, there, and welcome. It's really not possible to definitively stage lung cancer based on a biopsy alone. I believe what they told you was their best guess based on the information available. I assume you will be having a lobectomy. When they do the lobectomy, the surgeon will most likely sample more lymph nodes. Having just two lymph nodes examined doesn't preclude the possibility of metastasis. The PET CT is more likely to show whether there has been any spread elsewhere in your body. As for the scheduling, I'm not sure why it wasn't done sooner, but it really shouldn't make any difference, as long as it's done before the surgery. You might want to see if you can have the PET CT scan done locally and have it sent to MD Anderson. Almost any radiology department can do the scan.

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Hi LexieCat,

Thank you for your response. I really appreciate it! I can't tell you how much I am panicking right now. I am so scared that I could not sleep even taking sleeping pills. I try not to cry because I have two young high school kids that really depend on me. The more I show stress, the more they stress out. They are smart enough to know how deadly this disease is. They have seen my brother died of lung cancer in May last year after 2 years of debilitating treatments that included series of surgeries, chemo and radiation therapies (and he was not a smoker). As of now, I still have insurance because I am short term disability. I am not sure of what to do when I run out of insurance in about six months from my company. I am just wondering if I can or should apply for medicare so I can continue treatment. I know you have to be 65 years old to qualify for medicare and I am only 50 years old. Do you have any experience in this area that you can share? I am so stress out right now that my mind is in a fog and frozen most of the time. 

Thank you,

Minh 

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First of all, if you do have Stage I cancer (a or b), you might only need short-term disability. I was out with friends for dinner and a concert two weeks after my lobectomy and back at work about a week later. You might not need any further treatment, depending on what they find during surgery. Some Stage I patients get adjuvant chemo, but it's often not that debilitating. The only way you can qualify for Medicare before age 65 is if you received Social Security Disability (SSDI)--but you qualify only after you've been on disability for two years.  Stage IV patients automatically qualify for SSDI; lesser stages might require a lot of documentation, appeals, etc. 

I would STRONGLY suggest you not get ahead of yourself. It's frustrating to wait, but you really have to deal with all of this one step at a time. Since you're being treated at MD Anderson, it's likely a tumor sample will be sent out for biomarker testithng--ask to be sure they do that. Biomarker testing will show whether your cancer has a mutation that would allow targeted therapy (i.e., a pill) in lieu of chemo. 

The good news is that new treatments are being developed every day. I'm Stage IV, had my cancer progress after chemo/immunotherapy, and I was recently treated in a clinical trial. I'm hoping that will have a great outcome, but if it doesn't, there are tons of other trials out there.

So do your best to keep cool.  We have a lot of long-term survivors here on the forum. You are going through the hardest part right now. You will start to feel better when you have all the testing done and a treatment plan in place. Just to save wear and tear on you, I'd suggest seeing if you can have as much testing done locally as you can. And if you wind up getting chemo, you could probably have your infusions locally and just see your MD Anderson docs when it's time for a more thorough exam with scans. 

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Minh,

Welcome to our forums.  Lexie is giving you some great information.  And we also have some good readings that may help you out.  One is, "10 Steps to Surviving Lung Cancer; by a Survivor" and you can find that here.  Later I can also share some other tips to help you through the lobectomy surgery you may go through.

In the meantime you should try your best to stay calm.  Being in Stage 1 makes you a lucky person since most LC (Lung Cancer) is diagnosed at stage 3.  Also, the stage won't be fully identified until the surgery is complete and you are fully examined along with any tissue samples.  But, take a breath...LC is NOT the automatic death sentence it once was.  Innovation is occurring all the time and new treatments are closing in on this disease.  Next, stay away from Dr. Google...any stats you read there will be five-year averages that don't consider today's treatment options.  If you want prognosis then get it from your medical team as they are the best source.

Keep in touch with us, ask any questions you have of your medical team and here and stay as focused as possible.  Diagnosis is one of the worst times for all of us, but once treatment starts things begin to look up.  We have more control and weapons to fight this disease.  Stay strong, you can do this.

Lou

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Lexie and Lou have given you excellent advice and information. The diagnostic stage/learning what's going on is so overwhelming but it will settle down once you have results and a treatment plan. Please reach out - we have some rock stars on the forums.

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Thank you all for your advises and encouraging words. I have more medical issues than just lung cancer. My lung cancer was accidentally discovered when I had my open heart surgery to replace congenital bicuspid aortic valve with mechanical valve and triple bypasses performed in middle of April, 2021. During the medical workup for this surgery, they found this cancer nodule. At that time, the decision was move forward with heart surgery because it was more critical. So my current health summary includes mechanical heart valve, triple bypasses, two heart stents, diabetic, high cholesterol, and now lung cancer. I think these additional medical issues can adversely interfere with the lung cancer treatment. But my main concern now is about health insurance to continue treatment. I have been on short term disability since April, 2021. I think short term disability only lasts for 12 months. After that I will not have any more health care insurance. I hope I can get all lung cancer treatments complete before my health care insurance ended. And my employment may be terminated since I have been on sick leave for so long. I intend to stay fully employed as long as I can and I absolutely don't want to be on SSDI or medicare unless necessary. But under these circumstances, can/should I apply for these benefits just in case I need them? I don't want to wait for two years to get medicare. Can/should I apply and then put applications on hold if I am able to go back to work? And then reinstate applications if/when I become disable again due to this disease because I don't this lung cancer will go away after just one treatment. It may come back again and again! I am looking for suggestions as to what to do if I run out of employment health care insurance. What would you do if you in my situations? Since I don't have any family members nearby, my support network is virtually nil. Just scheduling Dr. appointments is already difficult because of I also have to find care for my kids while I am out for Dr. appointments. Many nights, I feel very exhausted and wish all these nightmares just go AWAY!  

Thank you,

Minh

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I'd suggest waiting to apply for SSDI till you have a diagnosis. If you are approved, the waiting period should date back to the earliest date you were disabled. (SSDI has a six-month waiting period from the time you were disabled till you are eligible for benefits.) You can't apply for medicare till you've been on SSDI for two years. Assuming your employer is large enough you should qualify for COBRA for 18 months. COBRA can be very expensive, though--you might want to look into other healthcare plans under the Affordable Care Act. If your income is very low, you could apply for Medicaid. Also, as I think I mentioned before, most hospitals have financial assistance available. I had two former partners who lacked health insurance receive free care for serious medical conditions under the hospital's "charity care" program. 

With any luck, you will have early stage cancer that is easily treatable and you can remain employed. It's smart to think ahead, but you don't need to assume you won't be able to work.

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Thanks Lexie,

You have given a few options that I will definitely look into between now and when my short term disability ends. As of now, they told me I have 4 nodules in my lungs. One in the left lung. Three in the right lung. Their sizes are between 4mm to 16mm. They claimed that the largest nodule 16mm is positive for adenocarcinoma and the other smaller nodules are negative for cancer. The 16mm nodule is partially solid. They also sampled and tested two lymph nodes which are also non malignant. What do you think my best case scenario is as far as staging and treatment after the PET/CT scan coming up soon? They have told me that I could get at least one or all of the following: surgery, chemo, radiation, adjuvant chemo, and immunotherapies. Basically, it sounds like they will throw a kitchen sink at me! It seems I am in a hopeless situation! 

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No, I don't think anyone is planning to throw all of that at you--not at once, certainly. Those are all the available treatments that conceivably COULD be used, depending on what testing shows. Few patients experience all of those treatments. I had surgery originally, then chemo/immunotherapy (drugs), and most recently treatment in a clinical trial of a new immunotherapy (using my own immune system). If that doesn't work, I'll likely be in another clinical trial with more chemo or immunotherapy. I'm not a good candidate for radiation due to the location of my tumor and I can't use targeted therapy because I have no targetable mutations. What kind of treatment you get will depend on all the information gained from the testing. Best case would probably be surgery with adjuvant chemo. That wouldn't last too long and there's a good chance you could continue working.

Believe me, your situation is far from hopeless. But you are going to have to wait for the testing to be done. 

Lung cancer is full of uncertainties. It's best to work on learning to live with that. It isn't easy, but we've all had to do it. Even when treatment eliminates evidence of disease, it's still possible for it to come back. I'm not saying that to scare you--lots of people are very successfully treated and have gone years and years cancer free. But it is a reality and no matter what you do, there are no guarantees. OTOH, there are no guarantees how long someone WITHOUT cancer will live. There are accidents, acute or chronic medical conditions, etc. I look at it as having a heads-up about something that is still treatable.

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Minh

I know its hard but focus on your treatment. Dont stress the cost issue now. Take a deep breath and understand that it appears they caught it early. Your heart issues sound like they were treated well and if anything it's a plus.

Hang in there. We are here to help as much as we can. You've already got a bunch of great info.

You got this.

Peace

Tom

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Hi Minh, With only one  16 mm nodule and no lymph nodes with cancer could well be stage 1., surgery might be a good choice if your health allows for it. After surgery you and your doctors could decide if anything further is needed. I had a lobectomy in 2016 and was diagnosed with Stage 1a adenocarcinoma. I didn't need any other treatment and I'm well today.  I'm 76 and was retired at the time of my surgery, but if I'd been working, I could probably have gone back to work in several weeks. I'm working now, part time. 

It's important to take one step at a time. You don't need to make a whole lot of decisions now. I Know it's hard not to be anxious now, but you'll probably feel calmer once all the tests are done and you have a treatment plan.

Bridget O

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Minh,

It may feel like my friends here are asking you to do the impossible, by staying calm and focused and not trying to rush ahead.  Trust me when I say, we all understand that feeling and the need to do something...anything to reduce it.  But, do take it one step at a time until you have a full diagnosis and treatment plan.  You'll be surprised how much more control you will feel once you are able to fight the disease along with your medical team.

Lou

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Thank you all for your valuable advises and encouragements. I just lost my brother to lung cancer last year. He fought hard for 2 1/2 years before it took his life. He was not a smoker and I don't judge smokers because I was one myself and quit 6 years ago. The cancer spread from his lung to his neck, brain, and then heart. His oncologist thought it was in the gene. He claimed that for some unknown reasons about 60% of Asian cancer patients are non smokers. I called the thoracic oncologist surgeon's nurse concerning my case. She does not know what is in the overall plan that the Team has intended for me. But she shared similar thinking as many of you have told me in this forum. Doctors will explore all the potential metastasis before they make treatment plan. They will investigate to see if the cancer has spread to lymph nodes, to other lung, and/or outside of the lung. After PET/CT on Sept. 27th, they will determine what to do next depends on if the cancer has spread and where in body. I pray that cancer has not spread and I will get surgery soon. But they may not do surgery because I had heart surgery in April which caused my left lung to collapsed partially and has liquid. Therefore lung surgery may not be possible because they need to have one healthy lung before they can operate on the other lung. So my treatment plan is still not clear! 

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Minh,

I'm a fairly newly-diagnosed Stage IV lung cancer patient (diagnosed in April 2021) so I cannot offer you all the wonderful advice and knowledge that all these many folks with years of experience and survivorship can give to you but I noticed we live in the exact same town in Indiana.  I am curious, though, why you are traveling down to Texas for treatment when Community North is partnered with MD Anderson for cancer care.  We have absolutely awesome doctors right here in our own backyard that have been trained at MD Anderson and do treatment boards with them on a weekly basis to discuss patient's cases.  My oncologist at Community is Dr. Bhatia and he is one of the best around our area.  You can get treated locally with all the support and knowledge coming from our local providers as well as MD Anderson Cancer Center.  Just thought I'd throw that out there.  It would certainly save you time, money, and effort to be treated locally with much likely the same suggestions for treatment and likely outcome.

DeDe

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Hi DeDe,

Thank you for you info! I really would like to get local treatment if I could get it in a reasonable timely manner. My experience is that I am don't have much luck with getting medical appointments reasonably expectation time. May be it's because of the Covid-19 pandemic. In March this year, my cardiologist nurse called and told me my heart is critically failing and I need a heart surgeon to get an open heart surgery ASAP. I called a surgeon (was recommended to me) in the same medical group (it's not the same medical group you mentioned) and was put on wait list for 4 weeks just to see him and consult. I would have to be on a wait list for another 6 to 8 weeks to get into surgery because they are too busy. I then called Cleveland Clinic and they got me in right away for surgery in 2 weeks. After the surgery, I had a left pleural effusion and had to waited for about 6 weeks to get local treatment and it was only half way treated and not fully therapeutic, while it took 3 days in MD Anderson to diagnose and treat. Without treatment in MD Anderson, my lung could have been permanently and fully damaged and I would not have known why. Even I have been a long time patient in this medical group, they only allow me to see my cardiologist once every 6 months because they are too busy. My brother who died last year of lung cancer also had to go out of state (he went to Dana-Farber) for treatment because he had difficult times scheduling with his local oncologist. I am sure Community has excellent doctors but when I got notice from Cleveland Clinic that I may have lung cancer, I called all the lung cancer centers that was recommended to me and MD Anderson was able to take me in the fastest. I have been very scared, nervous, and anxious, so I tend to make quick decision based on choices I had at the time!

How is your treatment at Community? Are you getting any surgery, chemo and/or radiation in the same hospital building on 82nd street? I pray for all of us to get well!

Thank you,

Minh

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Minh -

You have really been through the medical wringer for sure!  Yes, I've had all my treatment and exams at Community North on 82nd except my initial arm surgery (my lung cancer was discovered by a broken arm/pathological fracture to the humerus).  I travelled to St. Francis Mooresville for that surgery because my oncologist wanted me to be seen by an orthopedic oncologist so he could get tissue samples before he put the rod in my arm.  My situation was a little different because when the break happened, I did not have any insurance.  My kids did a GoFundMe and got insurance but it wasn't effective until the next coming month so from 4/9 until 5/1 I had no other medical treatment, (and lived with my broken arm), other than a visit to an orthopedist who confirmed this is most likely cancer (of some sort) that caused the fracture and an MRI.  But, by 5/1, it was all systems go and I've had visit after visit after visit.  I had bronchoscopy to sample the nodes (they couldn't get to the actual cancer and it was tiny at only 1.2 cm).  Got my PowerPort for chemo.  Had my arm fixed finally on 5/18 and radiation shortly after that.  Started chemo in June.  Seemed like things moved pretty quickly once the insurance was in place.  My experience has been that things move pretty quickly at the cancer center - maybe not so much elsewhere in the system - but pretty quick there.  You might give them a call or have your primary physician or doctor from MD Anderson make that call.  I was once seen same day I called when they discovered the blood clots in my lungs, which is practically unheard of in a specialist's office.  So far, I couldn't be happier with the treatment at Comm North for sure.  I pray all of us well as well!

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DeDe,

I am glad you are able to get insurance and treatment. I am worry about running out of health insurance if/when my company may terminate my employment due to long term absence from work since April this year for heart surgery. Including this new lung cancer treatment, I might have to be off work for another 10 to 12 weeks. I don't think my employer is happy about me being off from work for so long. I am interested in what insurance company did you purchase your insurance from? And what is the cost for monthly premium, max coverage amount, deduction, max out-of-pocket cost, copay, and coinsurance, etc..? Are there any requirements such as age, preconditions, etc.. for this insurance? I may have to buy private insurance like you if my employer terminate my job. Also, if your doctors were  unable to biopsy your lung nodule, how do they know it's lung cancer? 

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Minh 

Your employer sounds like a total *ss (excuse my language). I spent almost 20 years managing people and my reaction would have been 180 of that. Even for someone I didnt neccesarily like as an employee.

I'm so sorry to hear that. You will have the option of COBRA, but it's not cheap. I would suggest getting a free consult with a lawyer. I am not up to speed on current law but letting you go for health reasons may not be legal.

Best of luck

Peace

Tom

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Mihn - 

I bought my insurance through the Affordable Care Act online through the govt.  It is based on income.  If you fall below a certain amount, the govt kicks in a subsidy and then I also contacted Wellfund through Community who picked up my portion of the premium (again due to low income).  If it comes down to it and you lose your health insurance, the State of Indiana will step in at that point and you can apply for HIP through the state.  Monthly premiums for the ACA are income-based and you'll have your choice of many different options.  I went with a company called CareSource and, thus far, they've been very good to me.  You will also choose your deductible and your out-of-pocket costs.  I applied for financial assistance through Community and received a percentage relief of my overall out-of-pocket costs (again, based on income level).  Preconditions cannot be a factor in health insurance in the US so long as the ACA is still the law of the land.  I believe the ACA outlawed max coverage amounts too, but I'm not as certain about that one.  If I were you, I would contact someone at WellFund (https://www.ecommunity.com/healthminute/2020/wellfund-standing-you-through-care-and-costs) and bend their ear a little as far as what you are facing and see what they would suggest.  They are the experts in coverage.  Again, it will all depend on your income level.  If your employer lets you go (if that is even legal), then you can contact the Healthy Indiana Plan (HIP) about what to do next:  https://www.in.gov/fssa/hip/

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Thank you to all the good people for your info. and supports!

I need more suggestions as to what specific questions I need to ask in my upcoming appointment with thoracic oncologist surgeon and radiation oncologist. My mind is not very clear right now and I am not sure what questions to ask besides "What will be next step?". I my goal is to get a better picture of what is diagnostic tests required and what is the treatment plan will be? Time line of what will happen? If you are in my shoes, what questions will you ask?. Here is my upcoming schedule as follow:

Sept. 27 - meet with thoracic oncologist surgeon in the morning at 8:00am

Sept. 27 - meet with radiation oncologist in the afternoon 1:30pm.

Sept. 27 - PFT at 3:00

Sept. 28 - PET/CT scan at 6:00AM

 

So far here is the list of all medical procedures I have gotten since the beginning of Sept. 1:

1. A CT scan which indicated one large nodule of 16mm on the RLL. Two 5mm nodules on RUL. One 4mm LLL. 

2. A lung biopsy on the 16mm nodule on the RLL which indicated lepidic predominant adenocarcinoma. Two lymph nodes (4L and 7) were tested and no cancer cells found.

3. Thoracentesis to drain fluid from the left lung and tested for cancer. And no cancer cells found in fluid. Dr. believed the fluid built up in lung was the result of open heart surgery I had in April.

I also had open heart surgery in April to replace aortic valve and triple bypasses and have fluid in lung since this surgery.

Thank you!

 

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