Back to work or Disability?

Looking for some advice on whether I should go back to a very stressful job to keep my healthcare or if I should go on disability and Medicare. I have Stage 4 lung cancer with EGFR mutation that has spread to my brain. Currently it is manageable with the meds (Tarceva) but they give me many side effects and I tire easy. I have no idea what my time left here on earth is and My husband is home and disabled as well. I am not sure of what to do, Drs say as long as the meds work it can be managed for years but I've read that most people grow immune to these meds so I have no idea what to think. Do I work and keep good benefits but be exhausted and stressed or do I go on disability and medicare and live a simpler life with very little income? If anyone has gone thru this decision please respond. Thanks!!

26 Replies

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  • Honey live while you can spend time

    with family don't worry about a job

  • Spend your time with the people you

    Love

  • Thanks I agree too, but its hard, I feel like I'm living like in groundhogs day, every day I wake up and cant escape this mess Im somehow in. It can be depressing. Sometimes I think well if I go back to work I wont have time to be depressed but not sure if thats the case. If I don't go back then its sell the house, downsize everything live on a very small budget and hope my doctors take medicare!

    Not the way I thought I would retire!

  • I live like that every day but I can do

    Anything I wont.I live in a rental property and of food stamps I get to spend time with the kids

  • Yeah I agree its family first! Thanks for your help!!

  • cammfam4,

    The first decision I made when I found out I had stage 4 lung cancer was to retire - but I was 62 and could draw both a pension and social security. Your situation sounds more difficult. But I had a stressful job that required a lot of hours, and think continuing to work would have cut my time on this earth even shorter.

    In your case, I would be concerned about prescription coverage with the horrendous costs of the drugs we EGFR folks have to take to stay alive. Also how long will it take before you start getting the disability checks and have access to Medicare?

    Wishing you all the best as you make this very hard decision.

    Anita

  • I have stage 4 lung cancer, also. It is non small cell. It spread to my brain and lymph nodes. Diagnosis was in October 2014. I have been on several chemo drugs during the first year and went on Opdivo for one year, beginning in October 2015. Scans were done periodically and as of September 2016, my oncologist said that it was no longer working for me. I am now back on chemo. The Opdivo was much easier on me than any of the chemo drugs have been. I applied for my disability benefits at Social Security. They have a listing of illnesses that can be fast tracked and I was approved in less than two weeks. Fortunately, I still have health coverage through my spouse and use that. Once approved for Social Security, there is a two year waiting period before Medicare kicks in. You probably should research this for yourself and also get a full understanding of what coverage you would even have under Medicare. Part A covers hospital expenses (I think only around 80%), but you would be responsible for the remaining amount. Part B covers a portion of outpatient type services, but you would still be paying a portion of the bill.

    Just wanted you to be aware of how Medicare works for those on SS disability and that you educate yourself about how it works before getting your hopes up too much. I just got Part A in November 2016, due to the delay and declined Part B. Overall, it was best for me to stay on my spouses insurance than it was to use Medicare.

    I hope this is helpful to you.

  • Great advise to check with SS on when Medicare can start.

  • The two year delay with Medicare is probably dependent on your age for those going on SS disability. If you qualify for regular SS benefits (based on age), this probably does not apply.

  • After living with stage 4 lung for over 4 years and experiencing similar circumstances, I would not consider returning to a high stress job that would possibly make things worse much sooner, not to mention the sick days you would have to take. This disease and treatment is very unpredictable. We are going along pretty good then out of nowhere-BAM...a backslide. It has forced me to decide what is really important to me--leaving a mark on peoples lives and hearts or leaving smaller medical bills behind. Was a no brainer for me :) I am sure you will make the right decision for you! Best of luck!

  • Quit your job and spend quality time with your loved ones. You're still going to be tired but you will then be able to rest before you become completely exhausted. Your body needs you to rest so it will have more strength to fight the enemy, cancer.

    God bless you.

  • Thank you so much everyone for your replies. I am only 55 and did not take into consideration the fact that theres a 2 year wait for medicare and it also slipped my mind ( thanks radiation!) that my drug Tarceva costs a fortune. Luckily I have not had to pay for it yet but that would change if I leave my job. I am not sure ow long I could afford to stay on Cobra or get outside medical to be able to keep getting my meds. I will have to consider all of this before I make a decision but that time is up for me in a couple weeks. Its a shame that money can control our decisions in life. :(

  • Cammfam4,

    Please email me with your email address! I will send you some Resource Guides concerning financial help and co-pays. You are asking good questions, and I am so very grateful for the thoughtful responses of this community.

    pbezruki@freetobreathe.org

  • Peggy could you please email me the resources as well. Thank u

  • Of course! please send me your email at pbezruki@freetobreathe.org and we'll get that done.

  • Got it! You should have them in your email!

  • If you can find enough help out, I would retire!

  • Thanks, seems to be the overall opinion :) I agree and want to thank everyone for their valued advice.

  • Dear Cammfam4, I think you should honor yourself and how you feel. I am 65 and on disability. Have been for over 10 years. Retirement -disability - gave me time for myself in many ways. In 2012, I was diagnosed with DCIS breast cancer and had a double mastectomy in the end of January 2013. Was diagnosed with small cell lung cancer mid June 2014. The two cancers are NOT related. I am on my third bout of the small cell and being treated with immunotherapy this time called Keytruda. Side effects can be minimal. So far I'm very tired and am having headaches most mornings upon waking. I am relating this to you to let you know that cancer treatment can be managed most of the time. However, I would not have been able to work with a small cell diagnosis because treatment was so harsh - twice. So I wouldn't say not to work. But you can and should apply for social security disability, however, if you feel the need. It can take some time to receive disability and medicare. It is a tough decision I know. Look for a disability lawyer who is an advocate for disability. Doing it yourself is rough and lengthy. I suggest to you Health Advocates. They are a firm that specializes in disability cases. I have their number if you would like. Can you tell me where you live? I live in Santa Barbara, CA. Good luck to you. God bless and take care!!

  • Hi kate93105, I live in Sacramento, I was under the impression that a lawyer is not needed for stage 4 cancer diagnosis, that you automatically qualify. I think the bigger issue is the health insurance for me I understand it takes 2 years for Medicare once approved on SS Disability. Not sure how long one can stay on cobra and its very expensive too. Decisions, decisions , time for the pros and cons list :)

  • cammfam4, I received my medicare just shortly after I was granted my disability. Call or email medicare and they will give you some good information. Good luck. My prayers to you.

  • I opted for disability. I was a supervisor on the front end of Wal Mart. It required a lot of running around. I was so short on breath. My doctors advised that would improve, but could take well beyond a year. I stayed on leave for 5 months. I finally called work and told them it wasn't fair for them to keep my job open and applied for disability. I got it in 8 months.

  • How long before the medicare kicked in?

  • It is a 2 year wait. I got it from the health exchange until the end of the waiting period

  • OK thank you!

  • It is a difficult decision, but I chose to go on disability. Medicare is a 2 year wait, but in the meantime Medicaid kicked in to cover some of the medical. I was fortunate in that the medical group for non-cancer doctors accepted Medicaid so I could keep my doctors, but I still went into enormous debt. Roswell Park Cancer institute has a financial program that helped take care of the cancer bills. Roswell also helped with the Medicaid application through their financial social workers. There were a lot of changes to my life but I managed to squeak by. My advice to you is to email Peggy and get her resources, and ask your cancer team what help they offer. Keep in mind that if you own a home they cannot take it away from you and that if you make small payments on bills, most doctors will accept that you are at least trying. The hardest part is going to be that the drugs we need are so damned expensive. You may find it helpful to contact the pharmaceutical companies and see if they have any programs to help. Also, living close to Canada, I got a Canadian doctor who would take the prescriptions from my US docs and okay them to be filled in Canada - that was a tremendous savings. There are programs out there to help us, but it is not easy finding them and some of it depends on the state you live in - I live in Western NY. I will add you to my prayers and hope for the best for you.

    Also, if you do go to Medicaid, it is best to call and make an appointment with a case manager, that way you get much better care - I learned this the hard way.

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