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Freshly diagnosed, not super excited about it


Curry

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Hello,

I've been waiting for a diagnosis to reach out to a support community. I knew the only way I could get through this is knowing that I am not alone in this. After 2 months of tests and runaround I finally received a gut punching stage IV NSCLC w/ bone mets diagnosis at the age of 38. They are going to do some genetic screening so I could possibly do targeted therapy, radiation, chemo.. I mean, how did I get this deadly cancer? If it is genetics does an environmental factor have to trigger it or does it just start growing?  

Do I go on long term disability? 

Does anyone have any experience with Moffitt Cancer Center in Tampa? I'm currently in VT but if this is what I'm facing I want a better and warmer quality of life. 

I finally found my life partner, landed a good job, had a sunny future...now I can't even sneeze without fracturing my ribs and I'm getting a scan on Super Bowl Sunday to see if this stuff is in my brain too. Thank you for listening and having this forum. 

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Damn Curry. I am so sorry but stop trying to figure out the why me 'cause there is no answer.

Want to first apologize for it taking so long for you to get a response. There will be more shortly I am sure.

You have found your community. We are here 24/7. You sound like you have your plan in place. Any questions? How can we help? 

Let us know how the scan goes. Not how any of us wanted to spend Superbowl Sunday.

Peace

Tom

 

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Oops. Forgot to answer your question. Normally you go on short term disability before long term. Should you? That really depends on you. How much do you like your job? How supportive is your employee? How stressful is your job?

Personally, I decided I could not work and battle cancer at the same time, so I left my well paying job. Others here have continued working thru their entire treatment. Listen to your body.

Peace

Tom

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Hi, Curry,

Sorry you're dealing with this--it sucks for anyone but I imagine for someone as young as you are it's an additional shock, as well as potentially screwing up a few more life plans.

I'm Stage IV also, and one thing you should know is that a Stage IV lung cancer diagnosis does automatically qualify one to receive SSDI (Social Security Disability benefits). It doesn't hurt to go ahead and apply--you can always suspend your benefits if you decide to keep working. The biggest advantage, for me, was that disability benefits are equivalent to the regular retirement benefit I would receive at my full retirement age. I'm 64 and a half, and would have a bit more than 2 years before I hit my full retirement age. So this has allowed me to stop work a bit sooner than I'd planned. You also might have disability benefits from your state (NJ does) and/or from your employer--you would have to check with HR. I'm still on "short term" disability from my employer but in a couple of months that will convert to long-term. 

You won't really know how you'll feel during treatment until you start. I didn't have any targetable mutations (you might be more likely to, because of your age), so I was on a course of chemo and immunotherapy. I had a great response and I'm now on "maintenance" therapy of one chemo drug and one immunotherapy drug. The only troublesome effects for me have been fatigue (not constant) and "brain fog," which made it too difficult for me to do my legal job.

This is a great group--I started with them before my surgery after my initial (then Stage Ib) diagnosis in 2017. Everyone is willing to share their experiences and knowledge, and to support each other.

I try to focus on how much more promising lung cancer treatment is now than it used to be. There are people here who are 15-20+ years out from an advanced cancer diagnosis. More and more, lung cancer can be treated like any other chronic disease (e.g., heart disease, diabetes). New discoveries are still being made and new therapies developed every day.

Hang in there and keep us posted!

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Curry,

Welcome here.

One can spend time pondering the why of a lung cancer diagnosis. I believe time is far better spend moving down the diagnosis path towards a treatment plan. These days, there is substantial life after lung cancer, thankfully!

You've had a biopsy (indicated by your mentioning of NSCLC) but you don't disclose the subtype of NSCLC. It comes in 3 flavors: adenocarcinoma, squamous cell and large cell. Of these, targeted therapy only applies to a small population of those with adenocarcinoma. Immunotherapy, however, is our Stage IV treatment godsend! It may treat all NSCLC flavors; it thankfully is showing results with deadly small cell lung cancer. Here is information on targeted therapy and immunotherapy. The genetic screening or as we refer to it, biomarker testing will disclose which of these methods will produce the best results.

At Lungevity, we do not comment on specific treatment providers except in a general sense. These three general categories might be termed as: neighborhood clinic, hospital, cancer research hospital. The first principal of treatment is that you feel comfortable and trusting of your medical oncologist. At Stage IV, your medical oncologist (also called a hematologist and oncologist) will be the quarterback of your team. Also playing will be a radiation oncologist and a pulmonologist. Some medical oncologist who specialize in lung cancer treatment are rebranding as thoracic oncologists. The results of biomarker testing might also influence your choice of a treatment location. If you have a rare biomarker, then you might seek out a cancer research hospital. If you don't have actionable biomarkers, you might be better served at a neighborhood clinic. In our disease, lines of treatments (method & type) are governed by what is termed a National Standard of Care. So if one has vanilla (my term) lung cancer (a type not having actionable biomarkers or immunotherapy suitability), you will receive the same method and type of treatment at a neighborhood clinic as in a cancer research hospital. I'm a long tenured Stage IV survivor. Here are my suggestions for surviving lung cancer that includes information on choosing physicians.

To your disability question. During my first line treatment (30 sessions of fractional radiation with concurrent weekly chemotherapy), I chose to use short term disability. My first line treatment purpose was to allow surgery and though successful, I endured many complications. After removal of my lung and resolution of complications, the Social Security Administration declared me disabled. I sent the check back and returned to work while undergoing chemotherapy to address a metastasis after surgery. I continued employment for 9 years until stress, chronic pain and difficulty sleeping combined to make my life miserable. Then I sought and obtained disability. As a Stage IV patient, Social Security Disability is normally an easy determination. Here is information on applying. But be mindful that if you are employed with health insurance benefits, there is a 24-month delay in the start of Medicare when one is found to be disabled by the Social Security Administration.

For me, work was an outlet that allowed me to feel productive and engaged in society. I liked the challenge of my job until the challenge started gnawing at my chronic pain. 

But, I've found that lung cancer is a disease of life. I've learned to embrace living over worrying. Likely you've consulted "Dr. Google" about survival statistics. You might read and ponder this instead.

Welcome here. I think you'll find this is a good place to learn about lung cancer and realize that life after diagnosis can be rich and meaningful.

Stay the course.

Tom

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Hi Curry: I am so sorry that you have lung cancer at such a young age. Can you please share more details on what type?  I am 74 years old who was diagnosed as stage III back in May. At that time I lived in Orlando. I sold my home and moved to Tampa so I can be treated at Moffitt Cancer Center.  Nine months later, I am glad I did. I am an advocate of treatment centers where there is a cancer board. You can have many opinions by many specialists at the same time. Like many other here I don't have any mutations and my PDL-1 is zero. Regardless, I was treated with Immunotherapy and chemotherapy. My oncologists describes the results as excellent. Once you know exactly what type of cancer you have, we will be able to answer your questions and help you through your journey. I wish you the best.

GaryG

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Yes, Tom makes a good point about making sure you have sufficient health coverage before making a decision on disability. You should qualify for COBRA, but that's usually incredibly expensive. Two years after you start getting SSDI you would be eligible for Medicare (in spite of your age) but you would need to cover that two years or so in the meantime. That wasn't an issue for me, as I was on my second career, having retired from a previous government job (and the retirement included health benefits), so I didn't have to worry about how to pay for health insurance.  

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Dear Curry,

  My heart goes out to you and everyone who is diagnosed with Stage IV NSCLC (even hard to hear it in your case because you are so young).  Sadly, Lung Cancer can strike anyone at any age and more and more of the newly diagnosed patients are young and healthy with no know risk factors.   If you have lung you can get Lung Cancer.

  I can tell you that I am a Stage IV survivor and will be celebrating my 6th Cancerversary in March of 2021.  if you lock on my icon/name you can read my story.  I had a very grim outlook, but I'm doing well and as of my last scan I am now NED (No Evidence of Disease) which I something we ALL hope for.

  I wish you the very best as you move forward in your treatment plan.   I do know folks who go to Moffit and are very happy, but I know folks to love their local cancer centers too.  You have to find the right fit for you.

 I also agree that the most important thing will be to keep ANY health coverage and to avoid any gaps in coverage.  As already stated, IF you go apply for SSDI (Social Security Disability Insurance), it takes 2 full years before you become eligible for Medicare "A" and at that point, you'd still need to pick up Medicare "B" a MediGap plan and a Prescription Drug plan and IF you end up on 'targeted therapy" it can BE very expensive so a top plan is vital.  Also keep in mind that many of the drug manufacturers do offer discounts to cancer patients for their particular medication if you meet their guidelines.  You'll need to have more testing before you know if you might be a candidate for that type of treatment.

I wish you the very best !   

    Lisa

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Hi Curry,

I just wanted to pop in to say welcome to our group. I'm sorry you had to find us. I was also diagnosed as stage IV NSCLC. Mine was Squamous Cell which is a little less common than Adenocarcinoma. I was very lucky in a couple of ways during my journey. First off I went to a local Oncologist?Hematologist that I was referred to by my PCP. He is brilliant and an out of the box thinking guy which I love. Finding my Dr was my first lucky break. I also had an 80% PDL-1 score so Keytruda was in the mix for me. A high PDL-1 score was my second lucky break. After 2 years of chemotherapy, immunotherapy and radiation and after the met to my hip lymph node was gone for over a year my out of the box Dr sent me to thoracic surgeon, which was my third lucky break, and I had a lobectomy. It has only been a few months but I had a CT scan last week that showed that I was "in complete remission" according to my Dr. I never thought I would ever hear those words. All I'm trying to say is you never know what is next with your treatment journey and maybe you will be lucky like me.  I wish you all the luck in the world. Peace, light and great scans to all, Claudia

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Thank you all for your thoughts. Thank you for taking the time to thoroughly explain things and share your experiences. It is so hard having to navigate finances and deal with cancer at the same time and I hope I can find the strength you all have. Yesterday I found out I have brain mets too. I've been set up with a social worker. I'll continue to listen and learn from all of you. Thank you all so very much.

Curry

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I'm sorry to hear about the brain mets--several people here have had them and they can often be zapped with radiation. Glad to hear you've been set up with a social worker to help with the planning process. I was fortunate in that I had the health care piece in place (and will qualify for medicare anyway this year when I turn 65), and am well-positioned to retire. Still, people in your situation are able to put together plans that will work to keep them financially afloat. 

Actually, some of the planning I did made me a bit more relaxed about dealing with the cancer. I did things like making sure I had an advanced directive so family members could talk to my doctors and make decisions if I was unable to, made sure my will and beneficiary documents were up to date, etc. I wasn't (and am not) planning on going anywhere anytime soon, but as I said, getting those things taken care of reassured me that I wouldn't have to rush around and try to deal with it if there were a significant medical change for the worse. Everybody's different about that sort of thing, but it was calming for me to feel like I had the bases covered.

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Hello, Curry!  Like the saying goes here "welcome to the club no one wants to join".  But you are definitely in good company and this forum and its wonderful peeps have been priceless to me.  I was diagnosed with stage 3A lung cancer in November 2020.  Went through 6 weeks of radiation (5 days a week) and chemo one of those days.  I didn't go on any disability or quit my job but I did take FMLA sick leave for about 2 1/2 months and then returned to work.  Fast forward to this last November when I "graduated" to stage 4 as I have some small blips on my adrenal glands which I am undergoing more chemo for.  I opted to have my treatments on a Friday, work from home the following Monday-Tuesday, and then go to work the rest of the time in between treatments, which are every 3 weeks.  So you have a ton of options open to you (hopefully you have a very supportive and understanding employer) that you can customize to your needs once you find out what your treatment path is.  Best wishes to you and please keep us posted because we really do care!

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Hi Curry - 

There's not much I can add - everyone here has given you great information. It's an overwhelming, crappy, scary diagnosis but it can be survived. There are many long term survivors on here. Look to them when you're having a rough day. We're always here for you - 

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Hi Curry, 

My apologies for the belated welcome.  We can all relate to the gut punching phone call upon receiving this dreadful news.  I was 51 and a "healthy" competitive athlete that spent months in and out of multiple PCP offices before getting properly diagnosed.  You've receive a lot of great advice here. 

I also had a broken rib from the cough spasms, and bone mets.   That was 2 1/2 years ago, today, my cancer is No Evidence of Disease (new way of saying remission).  Filing for short term disability, then long term disability for me, worked out very well.  My employer had a generous disability policy.  When I filed for long term disability, I also had to submit an application for Social Security Disability which was almost immediately approved.   I will receive Medicare next month (after waiting the required 24 months).   

Given your age, it's very likely that the genetic testing will likely reveal something such as ALK or EGFR.    If you're considering relocating, you might want to see if you have one of these mutations and then relocate to an area where there is a center of excellence that specializes in that mutation.  It takes a long while to get your sea legs, but brighter days are coming.  Until then, we can help get you through this.   Hang on tight, we've got you!

Michelle   

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Hi Curry,

Let me reiterate my welcome and the fact that it stinks that you have to be here. I am "young", 50 and have young kids, not working is not an option for me. I have great health care and working is  the way I keep it. I am lucky enough to feel good and want to work. I dont want to sit around and think about cancer. If I was independently wealthy, maybe I would travel and volunteer, but that is not the case. I agree with whomever wrote that if you are considering moving, think about moving to a place with good health care. I think that Johns Hopkins Medicine does have a campus someplace in Florida, but I am not sure where. MD Anderson is in Texas and excellent!

I know your head must be swimming, but pause, get a bio maker test, see the results and what that means for treatment and then make other decisions. 

We are here for you.

 

Deirdre

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Curry,

I'm so sorry to hear of your diagnosis.  We do have a Younger Adults Survivor Group on Facebook that might be helpful for you to join as well: https://www.facebook.com/groups/YASlung

If you would like additional support with have Virtual Meetups four times a week https://lungevity.org/for-patients-caregivers/support-services/virtual-meetups-for-lung-cancer-patients-survivors-and

We also have a LifeLine Mentor Program where we can match you with somone close in age with a similar diagnosis to give support https://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring

And if you have any financial questions, you can call the HELPLine https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline

We are here for you.  Big hugs.

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Thank you all so much for your help! It has been hard keeping up with the avalanche of information and appointments so I apologize for not responding individually. I have the prelim results and have EGFR so will start Tagrisso soon. Fingers crossed. Thank you all and best to you all as well. 

Curry

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@Curry, welcome to the EGFR family. Tagrisso is highly effective for our mutation. For some people it comes with varying side effects, others not so much.

If you are interested, below are some closed Facebook groups that are easy to join. The members discuss all things Tagrisso. Hope you'll join. 

Tagrisso (osimertinib) Patients & Caregivers Group

LUNGevity EGFR Group

LUNGevity Targeted Therapies Group

Good luck with Tag. You should see results fairly quickly. 

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  • 5 months later...
On 2/7/2021 at 1:12 PM, LexieCat said:

Yes, Tom makes a good point about making sure you have sufficient health coverage before making a decision on disability. You should qualify for COBRA, but that's usually incredibly expensive. Two years after you start getting SSDI you would be eligible for Medicare (in spite of your age) but you would need to cover that two years or so in the meantime. That wasn't an issue for me, as I was on my second career, having retired from a previous government job (and the retirement included health benefits), so I didn't have to worry about how to pay for health insurance.  

LexiCat

I am also retired fed, and currently working part time to feed my chaos habit.  U mentioned u had a 3nd career - did u go on SDI or SSDI during yr treatment? I may need to apply for some type of.disability (already collecting SS)

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I get a pension from my first career (government job). After I retired I started a second career--I quit working when chemo made it too difficult to continue. I applied for and received SSDI as well as employer-paid long-term disability (which will continue only till next December, when I reach my full retirement age). Whether it would benefit you to apply for SSDI now probably depends on your current age. If you are already at your full retirement age, there might not be any benefit.

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