Financial and Career Implications of Cancer

My experience with disability was very similar to yours, LynnFish, as was the decision to (not) continue working. I also wonder why this isn't talked about much, even here.

I'm impressed with those who continue to choose to work. The first time around when I was stage III and continued to work, I remember how tired I was, particularly during radiation when I worked full-time. I remember being so happy to gradually regain my stamina. These days with the ongoing treatments, all my energy would be reserved for work. It's not worth it to me even though I enjoyed my job and miss it now.

I have gone on disability. For me, just the time away from work for treatments, doctor's appointments, scans, feeling poorly from treatment, etc., would have made it unfair to my employer. It seems I would have to be away from the office 1-2 times a week, for a few hours to most of the day sometimes for medical stuff. How is that fair to an employer and how can I really be productive under those circumstances?

I hope to get to a point where I am stable/NED/in regression where I can figure out what I can expect from my disease and then make a decision to return to work. In the meantime, although I feel quite well most days, the time away from the office and the uncertainty of the future is enough to keep me not working for now.

I had the questions about volunteering on my disability application too. I think if one were volunteering a lot, then the case might be made that one could be using that energy to work, at least that is my guess. I was also asked on my application about exercising -I just answered honestly that I did exercise.

Great topic, and one I have wrestled with as well.

I have a question regarding the short/long term disability and the social security disability. Can you collect both at the same time? Does one off set the other? I know my short term pays 50% of my salary, which will be very difficult for my family. If I could pair the two together, it may be manageable.

Anyone know how this works?

I worked 2 years after my mets diagnosis. I had a HARD time deciding to go on disability until I was passed on for a promotion. BAM, f-that, going on disability. BEST DECISION EVER! So happy I did it. I have done a whole lot of living with a hell of a lot of less stress!! I did do accelerated benefits on my life insurance with made it possible.

At a note: I had a former co -worker , with whom I still keep in contact with, who was diagnosed with aggressive Ocular cancer that had metastasized. I pleaded with her to go on disability... she waited...not sure why (she was financially secure). She never got a chance to collect SSD, (5 month waiting period)....

if you are even THINKING about it, don't wait, please don't wait. There is so much more to life then working. I loved my job, but there are other things to do!!

Great topic! I've been struggling with this for awhile. Although, I know I want to do it for me, my family, and my students I am so worried about our finances. I'm a teacher so navigating through the county, state and federal policies is frustrating. Everytime I think I have my head wrapped around the money amount we should receive, I read something that changes everything. There is only one benefits lady for our county and I feel like I'm driving her nuts. She says I should be set but my history is different. I worked full time for 8 years then went part time. I went full time in October so I could get disability and life insurance. I'm afraid there is a loophole somewhere that is going to not allow me to get those benefits. I just wished I had the nerve to say I'm DONE with working!!

Here is my experience with work and disability:

I knew I had breast cancer before my first doctor's appointment. Since I hadn't been officially diagnosed yet, I told my boss that I would need time off for surgery. So I went on a medical leave of absence in December of last year. I simply was having too much trouble concentrating at work, and I had a demanding, stressful job.

After I was diagnosed, it was a month before they were able to schedule me for surgery. I wouldn't have been able to do my job anyway because of the exhaustion I was having, so I spent time resting (I slept a lot) and making plans for what I knew would be a long journey through cancer treatment with surgery, chemotherapy and radiation therapy. Much of that included simplifying my life and getting rid of those things that I felt I couldn't manage anymore. I sold my house (a big two-story, three bedroom house) and moved into a one bedroom apartment.

After my surgery in January, I went back to work in February and felt good, but chemotherapy started in February. I managed to work full-time through chemotherapy but had many days after my infusions (which were every three weeks) when I was barely functional. Much of my job required using my brain and I definitely had "chemo" brain, as well as exhaustion from the effects of chemo.

Near the end of chemotherapy, I developed peripheral neuropathy. Part of the requirements of my job included the possibility of having to cover other departments when staffing shortages required it. The demands of those jobs required me to able to stand on my feet for long periods of time (8 to 12 hours per day), My boss had kept me out of that requirement while I was on chemotherapy but he had plans to put me back into the mix. With the neuropathy, I would not have been able to do that without severe pain. And I was still facing radiation therapy with daily treatments for five weeks and the exhaustion that comes with it.

I had always known that taking disability was an option and the stress of the job I was in made that option attractive to me. I had short-term disability benefits, but I am 61 years old and approaching the age when taking Social Security benefits was an option.

Since I'm a nurse, I often receive flyers about various educational seminars. One of them came from a licensed social worker about palliative care and it dealt with some of these issues around spiritual and emotional distress. When we're faced with stage IV breast cancer, much of our thinking needs to be directed towards Quality of Life. And trying to maintain full-time employment in this stressful job that often required me to work 12 hours a day was directly impacting the quality of my life.

With some encouragement from a co-worker, I looked into Social Security benefits. I wouldn't qualify for normal social security benefits until I am 62. However, if I took disability, I could stop working and I would receive $500/month more than if I waited until I was 62 to retire. This was very close to the amount of money I would receive at age 66 (full retirement age). And disability benefits automatically convert to normal Social Security at age 66 with no loss in income. In addition, by taking disability this year, I would be eligible for Medicare in two years instead of waiting until I am age 65. It turns out that a diagnosis of Metastatic Breast Cancer is an automatic qualifier for disability benefits. And the whole application process is expedited - you know within 10 days of submitting your application if you are approved (which I was).

But there are some caveats - you have to stop working (or limit your income to less than $1090 per month) for five months. Your first check won't arrive until 6 months after your effective date of disability. So you have to have a financial cushion to carry you through those first 6 months. For me, part of that money came from the sale of my house. Part of it came from an old IRA account. The rest of it came from using my short-term disability insurance (which covers you for 22 weeks - just long enough to cover you until Social Security comes in).

The other issue is health insurance. While I was receiving short-term disability, my employer still provided me with health insurance. Once the short-term disability stopped, the coverage for health insurance stopped. The cost of insurance through my COBRA provider would be $700/month - something that on a fixed income I would never be able to afford. That sent me to The Marketplace, to try to find a less expensive plan. They ask you about your taxable income for 2015 and your projected taxable income for 2016. Even though I've barely worked this year (four months), I still had a fair amount of income and with financial assistance, I was still looking at paying $500/month for insurance.

I always understood that at some point, I would need Medicaid. Social Security disability means you are eligible for Medicaid. When I spoke to The Marketplace person, she transferred me to Connect for Health Colorado, which is the entity that deals with Medicaid applications through The Marketplace. Over the phone, we completed a Medicaid application - and I was approved and received my Medicaid card two weeks after the application. I did have to go to the local Human Services department with proof of citizenship and a Social Security Number, but now all is in place.

With Medicaid in place, I have much better medical coverage. I used to have $35 copays for all the specialist appointments through my employer's health plan - now I pay $2. I recently had cataract surgery and my copay was $1.

I went on disability in June of this year. Without the stress of a full-time job, the quality of my life has improved 1000%. I returned to work, but in a limited capacity - just one day per week and no prolonged standing. It's therapeutic for me to work one day per week and provides me with some extra money. I still enjoy visiting with my coworkers and most of them seem to feel inspired by my journey with breast cancer. But I'm not working enough to disqualify me from disability.

Overall, the decision to take disability was a good one.

pwilmarth, I didn't know that you could automatically qualify for Medicaid if you're approved for SSDI. I had been told about the Medicare after two years regardless of age. I'm on my husband's insurance since I am no longer working but it is always a worry in the back of my mind if something were to happen to his job. This is good to know about the Medicaid. Thank you for mentioning that and I will have to look into it. I'm sure my state has some type of marketplace where I could try to find out this information. Colorado is a great place though, I grew up there!

So glad you started this topic, LynnFish, lots of good info here and it's something I've wondered about for the future and I'm clearly not alone!

For myself, I'm still working and happy with that and able to do that, but I know with each progression, more and more disabling side effects are a possibility and it helps me to feel more comfortable having information like this and on some of the other threads on the topic over the years. I always like to have a plan in place in case I need it!

I've started the process to leave my job. April 4 will be 2 years since my diagnosis. I have applied for the ADB for one of my insurance policies that will pay off all of our debt, including the house, and we will only have utilities and insurance left to pay. The first application was denied because my oncology office did not complete the paperwork correctly (they put the statistical life expectancy in the "how much time is left" box), so last week after treatment, I sat down with a PA and we completely updated my records with all of my symptoms and they are submitting that to the insurance company with an amended form explaining the error. Hopefully it will go through, as without this, I am not comfortable leaving my job if the house is not paid off. My husband has a good job, but things will be tight if we still have the mortgage, and I would rather have that money going into savings.

My plan is to go out on short-term disability, then transition to long term disability. I have discussed this already with my boss, and his bosses, and we have obtained approval to double fill my position in order to allow me to train my replacement. As soon as I receive the approval on the ADB, we will begin the hiring process for my replacement, I will train them, and then I will start the short term disability. STD will run for 6 months. Once I make the transition to long term disability, I will have to apply for SSDI, and once approved I will apply for Medicaid. In the interim, I will have to continue to pay for my health insurance. It currently costs $100 month (I'm a state employee) and that will last throughout the short term disability, but even with the health insurance credit, it will rise to $460 month while my income will drop to 60% on long term disability. There will be enough funding from the ADB to cover the health insurance payments until I get Medicaid.

I never thought I would be "retired" at age 50, and it still feels kinda weird knowing the gears have been set in motion for this to happen.

I am looking forward to making this transition. Mostly I look forward to not being so tired at the end of the day that I can keep my house clean and cook more regularly. My husband currently works 6 days per week, once the house is paid off, he will drop to a 5 day work-week and I am thrilled at the idea of having actual weekends with him. Our boys are grown, but we have 2 furry children who love having me home, so the time with them, that includes the energy to walk them and play with them, is a huge bonus also.

Singlemom,

Your 9 year old daughter is eliligible to get SSDI money as well until she is 18. This will go to you as well.

Terri

SSDI is independent of STD and LTD. You can get STD and LTD at the same time as SSDI, but SSDI doesn't pay until you have been disabled for 5 months. However, because of Social Security rules, the first check doesn't arrive until at least 30 days after you start receiving benefits.

For example, my effective date of disability was 6/4/15

Benefits start 12/4/15

First check is due 1/4/16 but Social Security issues checks based on the day of the month you were born:

1st through 10th Second Wednesday
11th through 20th Third Wednesday
After the 20th Fourth Wednesday

My first check will arrive 1/27/16

Your STD benefit will be exhausted before this, but I would check with Social Security about how they handle the LTD. There's rules about "Substantial Gain Activities" and your LTD may be deducted from your SSDI payment.

Still it's worth applying and getting approved for SSDI because of the effect it has on your Medicare eligibility. There are vocational rehab opportunities available to you and should you choose, you can do trial of work programs that allow you to return to work without losing your disability benefit or Medicare eligibility.

kaluha, I sent you a private message answering your questions

One thing that has happened since I went on disability is that my expenses have gone down. It's something we never think about, but it costs money to work. I don't drive nearly as much as I used to. I used to spend $50 per week for gas. Since I no longer have to go to work every day, the amount I spend on gas is minimal. A tank of gas lasts me over a month, depending on doctor's appointments. Because I was so busy, I seldom had time to cook and I used to eat out a lot. Now, I have time to cook my own food (better for my health), and my food costs have gone down.

If your disability pays you 60% of your salary, remember that is 60% of your pre-tax dollars. For me, that meant I received nearly as much money as I used to get after taxes and deductions for health insurance and disability insurance. So I didn't feel like I was getting less money and I certainly was spending less. My disability was more than I will receive from SSDI in January. But working part-time will make up for some of this lost income and I will be ok.

I've worked in long-term care during my nursing career, and it happens to almost everyone if you live long enough - you will develop health problems, retire and will need financial assistance. Most of us won't have acquired enough assets to cover our expenses. We will need to apply for Medicaid and Medicare (working with people right now who used to be engineers and college professors - and they are on Medicaid and Medicare). I have been fortunate enough to work in the administrative side of healthcare and it taught me how and when to apply for these programs. These are your safety nets and they are there for you to use.

I just look at this as a new chapter in my life. It's an opportunity to get involved in the things that I enjoy and enhance my spiritual growth. I have a neighbor who is my age and he is retired. He's very involved with his church and because it's the holidays, he goes to local nursing homes and provides entertainment to the residents. He gets to do things in the service of others and it keeps him active and involved in his community.

It's really up to you. But leaving full-time employment isn't a loss. It's an opportunity for growth.

Thank you Pwilmarth, it is helpful to hear that. I am hoping to so exactly what you said If I take a disability retirement. I would like to slow down, take care of myself, give to others and grow with my spirtuality. It is very hard now to manage. Does anyone know how likely it is to be granted disability at this stage. I am tolerating me current treatment well, but it is very difficult to work during the day and then come home and take care of the house and my daughter. I have no time to care for myself. This is what I would like to change. Just not sure if I would be denied due to minimal side effects at this time.