Anyone Stage 4 and still working?

Hi, I'm stage IV for a year now. Still working but am planning on filing for dissability at the end of the year. Remember that it takes 6 months for SSD to kick in so apply early as possible if you think he won't be going back to work. The fatigue in my experience does not get any better over time as long as he is on medication. I've had surgery twice and been on Sutent and Votient so let me know if I can offer any futher advice. Best wishes, Scott

I found out that I was Stage 4 three years ago, at age 62.  I went on SSD after six months.  I didn't think too much about going back to work.  I felt that I couldn't handle it because of fatigue and because other side effects of the medication made for annoyances and compromises which I know would make me ineffective at work.  Besides, the surgeon's statistics as to life expectancy for Stage 4 folks was downright lousy and I wasn't going to waste my remaining time working, if at all possible (financially).  Absolutely no regrets about that decision.

Going on SSD is not difficult.  You can't start for six months, but Stage 4 kidney cancer is an automatic qualifier for SSD.  The Soc Sec representative was tough with me about the SSD application until she found out that I was Stage 4 RCC.  Then, she became the most helpful governmental representative you can imagine.

I believe that ingrediants for success against this disease includes good diet, rest and removal of stress.  Work is not always compatible with these.

Best wishes. 

Dutch

cheatinlil said:

Thanks Dutch!
Good to know. 

Thanks Dutch!

Good to know.  Maybe we will try on our own with SSD first without getting a lawyer.  Getting my husband to a place where he can accept it is another big thing.  What have you heard from the surgeon's statistics as to life expectancy for Stage 4??!  I can't seem to pin them down.  I guess I hear 5 - 9 years.  I often think about cashing in some 401K and taking time off to spend time together.  I have taken a week of unpaid leave in August and another week of unpaid leave in September.  But because of his fatigue, we just stayed home and napped.  It was kind of nice though!  But to me it wasn't long enough to feel like we are making the most of a bad situation.  We have two kids still at home age 11 and 15 so we can't really go anywhere.  We all 4 went to Vegas for Spring Break in March.  That was nice but one night he just stayed at the hotel while me and the kids went to a show because he was out of energy.  I just don't want to have any regrets.  I'm struggeling with the timing of it all and juggeling all the bills.  I'm blessed with a job that can provide while he is out.  I want to be home with him but we have bills to pay.  We have a 15 year mortgage that I have thought maybe I should refinance for 30 years so we will have more money.  My brain is on over drive trying to figure it out.  Thanks for listening!

is the same as Dutch's. I had no interest working the last year of my life. I'm thankful for the SSD. Haven't worked in 4 years now and don't miss it one bit.

a_oaklee said:

I agree its not necessary to

I agree its not necessary to have a lawyer.  Stage 4 is automatic acceptance. 

What a person does for a living is probably a deciding factor re employment.  My husband is able to be in an office.  There is a bathroom nearby.  The other factor is whether or not the person desires to continue work.  Some people would never want to retire.  My husband loves work.  I think it probably helps him feel better.  He no longer can do what he really would prefer doing.  He is on his third targeted therapy, 2 cyberknife, 2 general radiation treatments, 2 surgeries.  The pain and fatigue is the worst.  He does take ritalin to have energy and participate in activities.  

I personally believe the choice to work or not is my husbands.  It is hard on me, because i would rather be doing something else together.  He is just trying to live the way he did b.c.. before cancer.   Its definitely important for you to figure out finances.

Hi Cheatinlil,

I see from your profile that your husband is Stage IV and started Votrient, so I'm assuming that he is still on it.

I was still working when I became Stage IV and started Votrient.  The fatigue and brain fog were so bad, there was no way I could function well enough to work.  They allowed me to work from home, but I just couldn't be productive so I went on STD.  When that was about to run out, I went on LTD and applied for SSDI.  I knew that my performance was suffering and I couldn't chance being fired and losing my LTD.  There is  no way I could live off of SSDI only, much less afford COBRA on that income. I had been a workaholic all of my adult life, was single and my work was everything.  I was devastated when I had to give up my job and went into a very bad depression.  With antidepressants, I recovered and what amazes me is that , although I loved my work and it was everything to me, I now don't miss it one bit.  It is such a relief not to have the stress of trying to keep up with a high stress job while dealing with side effects of treatment.  It sounds like it would also relieve a lot of stress for you.

Stage IV RCC is on the Social Security Compassionate Allowance list which means that the application will be fast tracked.  Mine was approved in a couple of weeks.  You don't need to waste money on an attorney.  I did it all over the phone.

People have very different opinions about whether to continue working.  Some of us just can't because the side effects are too bad.  For some, the side effects are manageable.  Some want to work in spite of side effects because they still enjoy their work and it gives them satisfaction.  For some, the side effects are manageable, but they retire or go on SSDI anyway because they want to spend their remaining time with family and doing things they enjoy.  Everbody is different.

If he is not on your insurance, you may want to add him before he goes on disability unless you would rather he be on COBRA but that is very expensive.  If you decide to do that, let me know because there are some things you need to know.  If he applies for SSDI, his payments will start 5 months from the date of disability.  After another 2 years, he will qualify for Medicare.

If you are going to refinance your home, you might want to do that while he still has a job if his income might affect your ability to get a mortgage approved.

I hope all goes well for you both.

Kathy

I am 51; was diagnosed stage 4 at 49 with a solitary met to my lung.  So far, my treatment has been surgery to remove the kidney and the met.  No meds.  I am working full time.  If it comes back, and they put me on meds, I will use my disability insurance (65% of my salary) if it recurrs.

Like many others, I have been stage IV since initial diagnosis and now for almost four years.  I'm about to turn 49, so I'm a bit too young to retire, and besides that, what would I do all day alone?  I'm lucky enought that my wife and I both work for the same business, in the same building, on the same floor.  Additionally, we work four miles away from the Hillman Center in Pittsburgh.  So it would seem that every star aligned to allow me to continue to work. 

I did take five months off to have the nephrecomies, and for HD-IL2 treatments.  I work in Finance IT, and while my job is stressful at times I enjoy an incredibly understanding and accommodating manager and supportive team.  I disappear for long periods of time when fatigued and to deal with the occasional votrient side-effects, and no one asks why. They know. Some things you just can't hide.  I also get to work from home a few days each week to help with the cumulative effects of commuting.  Again, none of this is possible without my boss. 

I suppose having two children in college (and the accompanying tuition bills) is one of the things that keeps me going.  Or perhaps it is a combination of faith, naievity, stubbornness, hopefullness, and denial that keep me from applying for SSDI.  I managed to live to see their high school graduations, and it looks like I'll get to see my son graduate from college this coming spring.  If I'm lucky- I'll see both he and my daughter graduate from medical school.  Fancy that- they are both seeking to become physicians.  I'll keep working as long as the planets are properly aligned so I can help them get there.

I do appreciate the knowlege regarding SSDI that you all shared here.  I'll keep that in my pocket until I need it.

I had a solitary met to my adrenal gland which was removed in February. That made me Stage IV. No known mets at the moment. It's my second surgery in 3 years. Not on any treatment.

Still working full time. I actually applied for SSDI while I was out on STD in March. The only thing I heard from SS was a phone call or two. They asked if I had returned to work. I said yes. I've never heard from them again. I assume it's because even though I'm Stage IV, I have no inoperable mets. Annoyingly, I did the online application and I lost the account name and password they tell you not to lose so I haven't even been able to log back in to check the status. I had expected they'd snail mail me something at some point saying I was approved or denied, but they have not and it's been six months. If you do the online application, don't lose the account/password. They mean it when they say you can't recover it. I spent a lot of time on the application. I was hoping to know what's going on. Maybe I'll call them...

I applied just to see. I saw on their website that metastatic kidney cancer is a reason for approval. Still, they must take whether you're able to work or not into account. I really didn't want to quit working. However, I heard it was a good idea to apply because it takes a few months to kick in and you have a window of I believe 5 years to reactivate an old application and use the original date, so it made sense to apply as early as possible. Also, I thought if I got it and decided to go ahead and retire now, I could use that income to help me retire. There'd be no other way I could retire right now unless I want to be broke in a few years (particularly if I have to buy health insurance out of pocket).

The health insurance is the biggest pain for someone my age if trying to retire. To get similar coverage to what I have now (that lets me see the best doctors in my area), it would cost at least $800 or more a month. I don't feel like having that insurance is a luxury. From what I've heard the Obama care plans have many doctors either not taking the insurance or putting you way down the list for appointment priorities, so it's not as much of a help as you thought it might be. I guess it's better than nothing. However, if you have RCC, you really want to see competent specialists. It could be a matter of life and death- literally.

Todd

BDS said:

Just Call Me Crazy

When I was diagnosed with stage 4 RCC in May of 2012 many members of my family thought I should take disability retirement and file for SSD. Being as stubborn as I am, I said NO and went back to work.  Now, after almost 3 1/2 years and counting….. I am still working full time. I have to admit, the only reason I was able to work full time, tolerate the side effects of Votient is because I have an office job.I work in IT. If I was employed in any other trade/profession I do not think I could have done it.  I am currently in a clinical trial (NCT02178722) at HUP with the infusion drug Keytruda (Pembrolizumab) plus Investigational Drug INCB24360. Since entering the trial I have not suffered from any side effects what so ever – knock on wood! I have a very busy life and I feel great!  I should say in April I was diagnosed with a brain met. I came within 2 cm of filing my paper work, packing up my desk and calling it quits. My brain met was successfully treated with Gamma Knife and I returned to work.  So…. for right now, it’s I owe, I owe, it’s off to work I go!

PS

If and when I am removed from the clinical trial due to progression I will probably try one more medication; when that fails, I plan on putting in my paperwork. I am getting my next set scans shorty, right now I am suffering from really bad scan anxiety.

One final note, working full time with a stage 4 diagnoses of cancer is not a bowl of cherries. Since being diagnosed I have filed for FLMA, work has hired two people to do my job. I no longer perform most of the hands on work that I once really enjoyed. Now, I can only supervise my replacements.   - BDS   

I couldnt have worked with stage iv without a very supportive management who employed other people to work with me and cover for me when I couldnt do it.

Frankly, now I am am retiring, I'm more scared of inactivity than I am of the disease.

todd121 said:

Working

I had a solitary met to my adrenal gland which was removed in February. That made me Stage IV. No known mets at the moment. It's my second surgery in 3 years. Not on any treatment.

Still working full time. I actually applied for SSDI while I was out on STD in March. The only thing I heard from SS was a phone call or two. They asked if I had returned to work. I said yes. I've never heard from them again. I assume it's because even though I'm Stage IV, I have no inoperable mets. Annoyingly, I did the online application and I lost the account name and password they tell you not to lose so I haven't even been able to log back in to check the status. I had expected they'd snail mail me something at some point saying I was approved or denied, but they have not and it's been six months. If you do the online application, don't lose the account/password. They mean it when they say you can't recover it. I spent a lot of time on the application. I was hoping to know what's going on. Maybe I'll call them...

I applied just to see. I saw on their website that metastatic kidney cancer is a reason for approval. Still, they must take whether you're able to work or not into account. I really didn't want to quit working. However, I heard it was a good idea to apply because it takes a few months to kick in and you have a window of I believe 5 years to reactivate an old application and use the original date, so it made sense to apply as early as possible. Also, I thought if I got it and decided to go ahead and retire now, I could use that income to help me retire. There'd be no other way I could retire right now unless I want to be broke in a few years (particularly if I have to buy health insurance out of pocket).

The health insurance is the biggest pain for someone my age if trying to retire. To get similar coverage to what I have now (that lets me see the best doctors in my area), it would cost at least $800 or more a month. I don't feel like having that insurance is a luxury. From what I've heard the Obama care plans have many doctors either not taking the insurance or putting you way down the list for appointment priorities, so it's not as much of a help as you thought it might be. I guess it's better than nothing. However, if you have RCC, you really want to see competent specialists. It could be a matter of life and death- literally.

Todd

Todd,

It is my understanding that you cannot work and apply for SSD at the same time. If you work, your application is disqualified. You must be out of work the full six months before the benefits kick in. It will take 6 months for benefits to start. What you have heard about Obama care is false. You can pick the plan you want when you sign up. Doctors do not check to see if you have insurance through the ACA site and they certainly do not put you down on some priority list. The plan you pick is the same plan that other people have that will pay a higher premium for. If you stopped working and applied for SSD, Then signed-up for Obama care you would qualify for maximum credits towards premiums the first year becuase of you income level. This means your premium would be around 60 dollors and your max out of pocket for the year would be $500 dollors. The second year you would pay a bit more because you would receive a full year of benefits so you income level would be higher which is how they determine you premium cost. After two years you would automatically be enrolled in Medicare. Do some research and you will see that what I am saying is true. Hope this helps some. Scott