Keeping a job with stage 4 BC with bone mets?

[Rainbobaggins]

Hi there. My cancer has progressed to stage 4 breast cancer with bone mets. I am feeling so exhausted still from the first go round of cancer /surgery / chemo in 2013 and now am really worn out between another surgery, about to get radiation and resuming systemic therapy. I want to apply for disability but am feeling shamed by family and other peoples opinions. I'm wondering what people's experiences are here in this forum. Take care and I hope you're having a good day

[nstonerocks]

First I urge you dig deep and get the courage to reject any shaming or guilt imposed by others. I am so upset for you I could come thru this screen! If the people who love you don’t get it , set limits as in “I need to do the best thing for me to save myself.” End of conversation. and discuss with your doctor if you are comfortable with him or her. Maybe your loved ones don’t understand? Maybe they ought to read up on what you’re going through? Rainbaggins please focus on you. Can you take a leave with benefits that will give you time to think? If not take a long weekend maybe go off with a friend who is sympathetic and empathetic and write down the benefits of working and the benefits of disability. It’s a hard call on several levels. If you are depleted and will be going forward with treatments then you owe it to yourself to quit and do the right thing by your immune system. Being wiped out and stressed every day is a very bad idea. If you can foresee this letting up and if you like your job and coworkers maybe take a sick leave and go back. See how it goes. I think a good onc can have helpful input from the treatment end. I have Mets to lungs on Ibrance and femara . I can do the workday but after an hour or two Home I fall asleep watching Dr Phil with my mouth open. Geeze! My onc urged me not to quit. I took5 months off while in chemo after first diagnosed because I was an emotional mess. I am glad I went back. I don’t do well with lots of free time. But I’m hitting 65 soon and I’m thinking about what’s next. It’s different for everyone with lots of variables. If you lean towards disability what will you do with your time? It should be primarily about you and what lights up your life. Please let me know how it goes. I support you 100% and urge you to do the same. Hugs and best wishes. 🙏

[BangorBelle56 in reply to nstonerocks]

Lovely to see you speaking your mind. I have missed you xx

[TwithBC in reply to nstonerocks]

love this reply. Thanks for writing. So sincere and supportive—and helpful.

[diamags]

Dear Rainbo, I'm with nstoneorcks on wanting to come through the screen and fix those who try to shame you. They may know advertising, but clearly not the road of Stage IV cancer. I think it's oftentimes ignorance. They see a commercial for Ibrance and think that keeps us all alive for years and years and years. They hear of those with Stage 1-3 who have been "cured" and think we're one of them. Please recommend that they do a little more research on this advanced stage of the disease before they judge. If they are aware of the realities of this disease, and continue to judge, please remove them from your life. Your priority is you. If you want to quit, and have the financial means to do so, quit. You need to do what's good for you. Not anybody else. We all know how difficult this is and are here for you.

[Burgerde]

I was 62 when diagnosed with stage 4 with mets in brain , eye, lungs , liver and bones. Radiation and Chemo followed. I am a nurse practitioner. I couldn’t work. I decided to apply for SSD. I hired a lawyer as it was suggested by my MD as so many people have trouble. Stage 4 breast cancer is on the “quick approval “ list turns out. I was approved in a week ! I still had to wait mandatory 6 months. Never needed the lawyer. That should help you feel less guilty. Don’t. Work is also very stressful and stress is not good for you and the cancer. IF you feel you should collect disability, DO IT ! You have every right to. As you realize, I’m sure, you are on just the beginning of a hopefully LONG journey. Be good to yourself. I know family and outside influences not easy to avoid. They seem to not be understanding what you are going through. On the other hand the earlier replies are correct. If you enjoy your job and coworkers, maybe you can take a break, see how it goes. I find sometimes I wish I could. Once you collect SSD though, there is restrictions on work and money. You can check this out on Social Security web site. wish you the best. Let me know what you wind up doing.

[Epinto]

For anyone to put shame and guilt on u at this point is terrible! Do what is good for u. If u need to take a leave from work, do it!!! Stress is not good for us at any point in our lives and especially when we r going through this. I left my job last year because I could not take the stress if it. I took off about 6 months and started working part time, 3 days per week. Sometimes it is hard to adjust to not working but u find ways to fill up the time. My grandkids keep me busy! Do what’s good for u!!! Do not be shamed into anything!!!!

[Kakoburr]

Personally I found that the side effects from treatment are debilitating and greatly compromise ability to work. Stress induced by trying to work while fighting cancer and struggling to meet expectations and balance appointments with meetings, piled on top of regular work stress, family stress and-- oh, did I mention stress of the illness and its remedies?--was undermining my ability to heal. I did reduce to part time from home, at first for a year, but even that was overwhelming as essentially all my energy went to working when I could. While there are some who have no choice but to work, or never feel "themselves" unless they are working, for me it was salutary to take advantage of disability, which is intended for these situations. Family may have trouble for many reasons in seeing the importance of taking this route if it is best for your well-being, not the least may be the recognition that you have a real challenge on your hands!

Going through the application process can be a job in itself because the system is still designed with manual laborors in mind! Start with short term then move into long term disability as needed.

[Kakoburr in reply to Kakoburr]

PS: Bergede is right: the challenges were mainly for the LTD insurance; Social Security Disability is much easier due to the classification of the illness.

[equavel]

We are ashamed when we have done something bad... i do not think that to have done anything bad... you , like millions of other women have got cancer

I suggest that you find a therapist to explore these feelings that are depriving you from human and financial support

[KarenHale]

I was diagnosed at 51. The first Dr. told me I had 3 to 5 years, think quality of life. (I'm in the process of hopefully proving him wrong) I went on SSD and consider it early retirement. If you worked for many years SSD is based on what you earned and is your retirement money. I figure I may not be around to collect the social security I worked for. So don't feel guilty, have a retirement party for yourself.

[Snowcone16 in reply to KarenHale]

I think I would have walked out if my oncologist told me that...

So many advances, trials, options. I’m many cases, it’s 3 years with one med before changing prescriptions.

❤️

[USIrishcolleen in reply to KarenHale]

KarenHale,

I was on SSDI since spring of 2019 because I had a severe case of Guillain-Barre’ syndrome. Then, I was diagnosed with breast cancer (age 58) SSA switched me to MediCare, and I am essentially getting my retirement now also. I am 62 and have worked since I turned 16. I do not feel guilty one bit either.

Best,

Colleen

[Jerseygirl45]

Do not listen to naysayers. This is your life. I don't know your age but when I was diagnosed in July 2016 I was devastated. I could not think,walk up straight up, move my right arm. When they found cancer it was in my ribs. I first went on state disability for a year. Not sure if you have that at your job.Then I could get around and felt a lot better. I was on letrozole and Ibrance xgeva once a month. I was 71 yr and thought I could never stay home, what would I do to keep busy. I have always been very active. My job said I needed to make a decision but they would take me back on my terms full or part time. Finally I thought, how much time do I have left. 2 years maybe. So I collected my social security. Now I find my days not long enough to do all I want to do. Travel see my children and grand children. When I am tired I can sit. Everything is at my leisure. No rushing, have my slow mornings, doctor appointments etc. Do what is best for you. Enjoy what time you have left. I thought I would only have maybe 2 years. Then I joined this site and found women that have been living with this for 10 years or more. Very good news. The most important thing is your stress level, it will shorten your life. Hope you figure it out do what you want. I will look forward to your decision. Sad is east to get with your diagnosis. Barbara

[Rainbobaggins]

Wow!! Everyone...I am so touched That you all took time out from your day to write thoughtful replies and also that you were able to do it is mind-boggling I am not so energetic so I’m sorry I can’t thank each and everyone of you individually. I’m so happy to have found this group. Hope you have many many great days. Take care.

[Snowcone16 in reply to Rainbobaggins]

This group is really great. They really inspire and motivate me.

❤️

[TwithBC in reply to Rainbobaggins]

I agree — I read each response; so so loving and helpful. I agree with all the responses!

[nstonerocks]

Please don’t apologize. We are all sisters on this walk. We want you to feel better, take care of yourself and enjoy your life. No guilt. No shame. It might Be hard at first for you to set boundaries and reject criticism. Women are too often put in rolls where we sacrifice ourselves over and over again to make life easier for others. But try it! You will find your power and it will get easier. 🙏

[nstonerocks in reply to nstonerocks]

Did I really say rolls? A combo of beach and

Chemo brain. Been at the beach 5 days now and I am pretty 😎

[lashinator]

Jumping on the bandwagon of - live your life as YOU see fit. I stress at work, but find other outlets like exercise and good girlfriends high on my priority list and incorporate that into my regular week. It seems to make the time go by faster between Dr apptmts. I'm pretty far from retirement age so I just don't think about leaving my job. Best of luck, and check in often to this site. It is very inspiring to find others that can relate.

[Snowcone16]

You have nothing to feel ashamed. Be proud that you’re a strong woman, facing and confronting MBC. I know several on here have applied for ssdi benefits.

Personally, I’d like to keep my job as long as I can. The medical coverage is outstanding and I get 2.5 years of salary for life insurance. I will use fmla when needed or take a sabbatical.

Positive side is bone Mets are managed pretty well these days. Welcome to the board. 🤗

[BeckyHobson]

I am so sorry about the pressure and shaming you are receiving. It actually anger me. I applied shortly after my diagnosis (exact same as you) and was approved pretty much immediately.

Many of my close friends and family know that I receive it but I don’t share with many others because they don’t understand what we are going through or how we hurt and are exhausted. I know many people apply for ssdi and don’t get approved so I error on the side of caution and keep it on the down low. It is really nobody else’s business how our family makes ends meet and if someone has an opinion I simply ask them to keep it to themselves as it does not change a thing. Stay strong friend and apply!

[MONICAGELLER409]

Nobody and I mean NOBODY has the right to shame you from applying for disability. You have probably worked your entire life and are entitled. Plus, and most important, unless they are experiencing exactly the same physical pain, exhaustion and emotional pain you are, then they have no place telling you what you need. I’m sorry if i sound harsh because I really am a sweet person that is just fed up with people having opinions about issues they cannot even begin to relate to. Do what is best for you and only you!

[Buffwright]

I went to half time for a year, matched by short term disability insurance, and then full time with social security disability (at 63) and long term disability. I mention these because I’m guessing the shaming is about the image of able bodied people taking advantage of the system. If it’s about being “lazy” ask if they’d like to trade places! Or maybe they’re just inartfulky encouraging you to persevere!

I was a professional for 35 years, and just didn’t have the energy, focus, memory , etc to do the job. SSD has a virtual check box for people with stage 4 disease. Just make sure you continue to be as active as you can..,don’t retire from life!

[Rainbobaggins in reply to Buffwright]

Thank you :)❤️

[NPmary]

When l got diagnosed with NBC l was working while in tremendous pain and fatigue the previous 2 years trying to figure out what was wrong. I stopped working and retired, if l wasn't eligible for retirement l would have had to apply for disability - l couldn't go on working.

DO WHAT YOU NEED TO DO FOR YOURSELF.

Love and prayers, Mary.

[LisaT23]

Hi

I worked for 2 years with MBC to bone and lymph nodes. I had an intermittent FLMA. I would wind up taking 4 days after shots as well as a day here or there. My staff and boss understood. But I was always playing catch-up when I went in. Friends donated sick time to me, but even so it became too much. I was expected to work longer on the days I went in. My boss said that I should stay home if I didn't feel well, but needed 150% when I went in. She thought I was avoiding her, when I was just struggling to go in and get caught up and get everything done. I didn't have the energy or time to get up from my desk if I didn't have to. We are friends but even she didn't understand. I finally went out on a short term disability and am now on long term with SSDI. She is hiring 2 people to replace me, so she understands what I did at work but probably not how much MBC and treatments affects a person. I think the treatments are worse than the disease at this point, but as long as the meds work we have to do it. My boss and I are still friends, but without the stress.

Do what is right for you. Don't let others shame you into total exhaustion. It will only make you more unwell. There is a reason that MBC is almost an automatic approval for disability. We have to learn to put ourselves first sometimes, and accept help when we need it.

Lisa

[jjbrist]

I could not agree more with the other reply's. RETIRE, focus on You. Find time then to enjoy your life. I realize our journeys are not always going to be easy. But when we are having a good day, I run with it. I try to keep Gratitude in my thoughts. Between my Gratitude, God, Friends and Family, I will do my absolute to persevere.

[PJBinMI]

Tell your onc about the reaction you are getting from family members and then invite one or two of them to come to an appt with your onc! They need some educating about the realities of living with this lousy cancer! On a more personal note, I was diagnosed with mbc from the get go, with extensive bone mets and a highly E + cancer the month of my 58th birthday. I was just a few years into my second career, after going back to school, but there were times I felt as though I was being drowned by fatigue! I wanted to lie down right where I stood for a nap of a year or so! So I "retired" about 8 months later and have not regretted it for a minute! And you know something, MBC is considered so significant a disability that Social Security Disability Determination approves our disability claims very quickly compared to many/most. If we have worked enough quarters and paid into SS, and are able to document this diagnosis (oncs generally are helpful), it's a pretty straight forward process. People with other conditions often have to jump thru extra hoops and soemtimes get turned down and have to file appeals, but not with this diagnosis. I don't know why anybody would be snarky to you about that! They need educating about just what advanced cancer does to us! Fatigue is almost universal. I hope you can look past their reactions and make decisions that are best for you! We really don't have much wiggle room when it comes to taking care of ourselves!

[Dflur]

Please don’t EVER let anyone may you feel bad . I go through that too, and when you said it, it reminds me how sad . Stage 4 is qualifying you.

[susiemarmite]

I work for myself so once I stop, that's it. No money coming in. However, due to the endless medical appointments over recent months - sometimes 2-3 times per week at the moment - I am too unreliable for my clients so have chosen to hand most off them away. I think it depends on the nature of the work of you do and whether being at appointments will mean you lose business (for instance).

[TwithBC]

great comments — all of them.

[lovnmycat]

Hi Rainbobaggins,

We are all different and there is not one right answer other than no one should judge you. I can say for me, I was diagnosed as stage 4 so I went from zero - 100 overnight. I took time off of work and went on disability due to the appointments, mental and emotional strain and the side effects of starting new treatment. I'm happy to say after 3 months of being on Ibrance, Letrozole, Lupron Shots and Zomeda infusions - the side effects were manageable for me. I was able to go back to my job after 3 months. With that said, I have been lucky and have responded well to treatments. I had a lot of bone mets and was in a lot of pain early on. Luckily those appear to have healed and the pain is manageable. To be honest I think I would have needed those first three months just to adjust to a new outlook on life.

Shame on anyone who has the nerve to question anyone with Stage 4 cancer. Life it too short to spend time trying to please others. Surround yourself with those that lift you up and limit or eliminate spending time with anyone that doesn't make you happier than when you are alone.

Don't feel bad if you need to take time off and don't feel bad if that ends up being permanent. Everyone is different. Good luck and I'll be praying for you and the rest of us out there.

CJ

[Hopeful4Cure]

I pondered for 4 years to stop working and concentrate on me. With appointments and work there was so much stress and I was sleeping whenever I could find the time. I finally said enough and even though it took a month and a half for paperwork to go through and get paid, I should have done it 4 years ago. Tell your friends and family that until they walk in your shoes and go through all the crap that we have to go through to be supportive instead. Blessings