Anyone Stage 4 and still working?

Richgels1 said:

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

Thanks for the info. When I applied I was on short term disability and not working and had just been diagnosed Stage IV with my recurrence after my surgery. I wasn't sure frankly if I would go back to work. If you look at the website for SSDI, it lists metastatic kidney cancer as one of the conditions for approvaly, but I assume you're correct and that as soon as I went back to work it disqualified me. Still would have been nice to have heard something from them: a letter, a call, anything.

What you say about Obamacare I would have thought is true. However, I've heard from 3-4 friends that they have it and have had trouble getting appointments. I had one friend say he was told by certain doctors that they don't take it because it doesn't pay as well as other regular policies. So I'm not sure about it. I don't know how to find out for sure. Perhaps I should ask the doctor's billing people directly. I hope it is so as you say it is.

If I want to get really good care, I have to make sure that I keep insurance that will pay these top specialists in my area. I have such a high probability of needing it, I don't feel like I can risk going without it.

Best wishes,

Todd

i went to a SS office an hour before it opened and had to be 50+ people in line.  I went home discouraged and decided to try applying online.  It was straight forward and was contacted three weeks later that it was sent to determination department.  Received a pack of documents to fill out and faxed in.  Two weeks later I received a deposit for two months, so five weeks total.  I was flabbergasted and relieved to have one less thing to worry about.

there was no way I was going to spend one more day in the office after the diagnosis.

foxhd said:

I went

back to work for 6 months after surgery. But when I applied for SSD, they went back to my diagnosis date, not end of work date.

hi foxhad,

i hope you are doing well.  I was recently approved for SSD.  I was wondering if it is permanent or will they come back and ask us to requalify?  RCC is incurable so I am guessing not.

any ideas?  How long have you been on it?

michael poggi

Qt34167 said:

SSD

hi foxhad,

 

i hope you are doing well.  I was recently approved for SSD.  I was wondering if it is permanent or will they come back and ask us to requalify?  RCC is incurable so I am guessing not.

 

any ideas?  How long have you been on it?

 

michael poggi

 

I was told they may check on my status at some time. That won't matter. I haven't gotten better yet. It's been 3-4 years since benefits. I'm very thankful.

I have been stage IV for a year I take the Votrient religiously and I still work.  I did fill out the FMLA papers as did my ONC, the school district I work for has been patient with me but they said they will always leave termination on the board (of course they would like idiots in the media firing a cancer patient and schools hate bad publicity).  Under the Votrient I have had numerous problems with bowel control, fatigue, chemo brain, and various others issues and I have thought about SSD but I have way to many bills and I would not get much from SSD.  I think this will be my last year of teaching full time, I was told when I contacted SSD I could make about 1000 dollars extra a month working so I figure I will Sub teacher a couple of days a week next year until I just don't feel up to it anymore.  All this being said I admit I have missed a lot of work days because the Votrient was kicking my butt, recently my ONC gave me a sort of  vacation by dropping my dosage down to 400 mgs and that has helped, however he said this week I will probably go back up which means the torture begins again.  I want to teach as long as I can because I love teaching and I have bills to pay but I know there will come a time that it has to end and I plan on getting some of that money from SSD that I have been paying into for so long.

Mark

Footstomper said:

Mark

You just wrote the story of my life up to september. Then I got pneumonia and spent a week in hospital. Then I got to thinking, was I helping anyone by carrying on. I'd used up all my sick days and was working half a day. Much more of that and I would jeapordize my pension. I was finding the students harder to control because I wasnt seeing them dailly. That also made it harder to monitor their progress

In the meantime it was only a mattter of time before I shat myself in the classroom and my immune system was comromised so I was going to get sick again. Everyone I knew within the school system was incredibly supportive but the people at the level of middle management to whom I was only a number wanted me fired.

All in all retirement was the best option. I retired last week.

FS I am sorry you had to retire under these conditions, that sucks.  But I can relate to what you are going through, with the cancer and all the pills I find my self less sympathetic at times, especially to crappy parents who treat their children poorly, I am wanting to lash out at them verbally and I keep getting closer and closer to doing it.  It may be time for me to hang up my pencils soon. 

Mark

mrou50 said:

Working

I have been stage IV for a year I take the Votrient religiously and I still work.  I did fill out the FMLA papers as did my ONC, the school district I work for has been patient with me but they said they will always leave termination on the board (of course they would like idiots in the media firing a cancer patient and schools hate bad publicity).  Under the Votrient I have had numerous problems with bowel control, fatigue, chemo brain, and various others issues and I have thought about SSD but I have way to many bills and I would not get much from SSD.  I think this will be my last year of teaching full time, I was told when I contacted SSD I could make about 1000 dollars extra a month working so I figure I will Sub teacher a couple of days a week next year until I just don't feel up to it anymore.  All this being said I admit I have missed a lot of work days because the Votrient was kicking my butt, recently my ONC gave me a sort of  vacation by dropping my dosage down to 400 mgs and that has helped, however he said this week I will probably go back up which means the torture begins again.  I want to teach as long as I can because I love teaching and I have bills to pay but I know there will come a time that it has to end and I plan on getting some of that money from SSD that I have been paying into for so long.

 

Mark

As I retired unfit to work as a teacher, I have been warned that I cannot work as a sub as that will indicate I am fit enough to be a teacher

I am 55 years old now, and I have been dealing with my stage 4 cancer since July of 2024.

My renal cell carcinoma cancer was stage 3 when it presented back in July of 2023. One day at work I saw blood in the urine. After lots of testing they found out I had kidney cancer in my left kidney. I reviewed all my options and I chose surgery to remove that kidney, along with any cancer in the area that they knew of. I then went on chemo and the side effects made work ( driving a city bus ) unsafe due to the fatigue and nausea.

I was off almost a year and I was allowed back to work as my cancer was ( at that time ) gone according to my latest PET CT. I was only cancer free a few months. My next PET CT showed a couple of my lymph nodes near my heart and spine area was positive for cancer. That made me stage 4 at that time. After looking at my options I chose to do radiation, targeted chemo and immunotherapy ( Keytruda ). I knew I would be unsafe trying to continue to work with the side effects I would be dealing with so I went on medical leave again.

At this time I put in for SSDI, as it takes 6 months until you actually start receiving it. I also put in for my STD ( short term disability ) so I would have some income until my SSDI would start to pay me. Medicare takes a full 2 years to get once on SSDI, so I am having to pay my medical insurance until that kicks in. My workplace still has me on that medical leave and that saves me a LOT on what I have to pay for my medical insurance. That approved medical leave is reviewed often and can be dropped at any time, putting me on ( expensive ) COBRA coverage once I am terminated.

I am lucky that I had my home was on a 15 year mortgage, and I sold it so I could move close to family as I deal with my treatments and the side effects. I have the funds needed to pay my rent and all other expenses so I consider myself lucky in that. I am using dividend stock investment to supplement my SSDI income once I start receiving it. I will have close to what I made working only because I had the money in the home once I sole it. If not, I would have to live off SSDI and a modest savings alone.

Weather you work or not is a pretty personal choice. My job would not be a safe one to keep working with the fatigue and nausea chemo and other treatments can cause. Other jobs may be safe to continue doing with those side effects. The other consideration is the 5 year survivability rate. Mine is 10-15%. That made me pretty set on NOT working and trying to enjoy what time I may have left as best I can. I did not want to work until I died. Those who run their own business may see working very differently as that is something they built and not so much just a "job" for them.

I was a workaholic and put in countless overtime until this cancer put the "whammy' on me. I was very focused on paying off my home in under 15 years and then saving max amounts for a comfortable retirement some very distant day in the future. Sadly, that was just not in the cards for me now. It was difficult to accept my time was now much shorter than I expected. I accepted this in time, but it still sucks. Once you accept the situation you can then start making the best informed decisions for yourself going forward. Work or no work, sell the home and move close to family so they can help as needed. Deal with hellish side effects or not live as long overall.

I am all for quality of life vs more years alive. I had some very hellish side effects, so I am going to have less overall time and easier to handle treatment instead of some chemo options that may give me a 'few" more years time. That is as personal a decision as one can make here. As of today I am in fairly decent health. I can drive safely and do basic stuff and I am thankful for that. At some point that will be taken from me, so I enjoy my freedom and pain free mobility while I have it. I had my bed ridden time under the chemo and bad side effects, and others can relate I am sure.

If you are on this site you are dealing with cancer, and all that come with it. All you can do is make informed decisions based on your point of view and experience. I wish all of us the best in dealing with a most unfortunate situation. Take the help from family and friends if offered. Enjoy what you can, while you can. Fight the good fight and do the best you can as long as you can.

Diagnosed with metastatic Stage 4 Apr 2022 at 52yr. Have continued to work full-time, minus 2 FMLA leaves for surgeries. Continue on immunotherapy every 4 weeks. Have an office job and supportive company which has made a big difference to keep working as I am the sole income earner and have a college age kid. The SSDI information shared in this thread is very helpful when that point in time comes.