MBC and Your Job -- whats your story?
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Mlc96, does your job offer short and long term disability? You do sound as if you're qualified to take it. Also, Stage IV breast cancer gets fast approval through SSDI. I have gone on and off disability over the 7 years, depending on my situation. There is also a software called Dragon Naturally Speaking that allows voice to text at a computer. It is scary, but you do have options
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Selkie36, it's been a few weeks. Did you get the job offer, and if so, what did you decide. It does sound like you have a lot going on, with the homeschooling and treatments. Let us know how you are!
mlc96, sorry to hear about your situation at work. This is a tough one, indeed. Have you had an heart-to-heart to hear what your employer could provide in terms of short-term disability. Take a look here: Working after a metastatic breast cancer diagnosis. We're thinking of you!
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My employer does offer short and long term disability. I used STD in 2017 following my initial Mets diagnosis, and applied for LTD but was denied as the LTD company determined I was "stable" after 4 months of chemo, because the bone mets were reduced. I barely recovered from that chemo and had to go back on it again in 2018. I think my employer is concerned about me being in and out of work, like I don't have a regular schedule. I'm sorry if my cancer is inconvenient for them! It's certainly not convenient for me or my family. Sorry to vent! I am just concerned that if I'm out again they will determine they can do without me.
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mlc
I called the folks at https://www.cancerandcareers.org/ and they gave me incredibility helpful advice on job protections, etc. You might want to give them a call. If you're company is a certain size, you'd certainly be able to use FMLA to protect your job.
Susan
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I’ve recently been dx with metastatic bc. Have a liver biopsy in two days to determine pathology. From there I’ll get treatment plan.
I am the director of a chamber of commerce, which is a small non-profit. I have no benefits except vacation and sick days.
I just finished my original treatment in July 2018, so barely 6 mos ago. I struggled at my job During that treatment. Not only did I have to deal with my cancer About four months after I started treatment one of my employees was diagnosed with stage iv lung cancer. I have only two part-time employees
The year plus of treatment was hellish. I had surgical problems and needed hyperbaric oxygen treatment. This entailed five hours a day in an oxygen tank on top of trying to work full time. This went on for five weeks.
In addition My employee was falling more ill and eventually passed away.
The pressure was incredible. I failed repeatedly at work and continued to struggle months after treatment finished. Only recently have things gotten slightly better. I’ve been job hunting for months as I find no joy in this job.
Tomorrow I am going to call my disability lawyer and discuss how to go on ssdi. Many years ago I used to make loads of money but the last few years I scrape by. Needless to say I think I can make ssdi work for now I see u can work a little bit on disability so once thing starts are more settled I will look for a part-time gig to keep me busy.
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I am in a different position then most of you. I have a particular skill set that can be difficult to replace. I was diagnosed stage 4 from the start with bone mets 4 years ago. The company I worked for was wonderful, but I quit working on the advice of a financial advisor. My husband and I are planning on going our separate ways when our youngest graduates this year. So the financial advisor explained how SSDI and Medicare work and told me I needed to get the ball rolling while I was insured by my husbands employer. So while I was waiting for Medicare I was on his insurance. I'm glad I took his advice as I find I still get tired easily and don't know that I could have continued working FT. I needed to be able to focus and any errors would have been a costly mistake. I started working PT a year and a half ago in a completely different position and am making more on SSDI and working PT then I did working FT. The company I am working for offers dental and vision insurance so I have them covered as well. For me this was the right choice...I also still get LTD through my former employer and the life insurance I had with them also came with me.
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Bump
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I found out about my original breast cancer diagnosis one week after starting a new job and they were absolutely fantastic. My immediate supervisor and the lady I shared an office with at the time are older ladies and became like second/third mums. I had next to no leave saved up but had my surgery's just before Christmas so I didn't need to take too many days off. I worked all through chemo and radiation, I am able to work remotely so still managed to work even when I ended up in hospital with neutropenia a few times. They significantly reduced by workload which I found frustrating but I know their hearts were in the right place.
Not quite a year after finishing treatment I found out I had a brain met and was rushed into surgery with very little notice. Again my workplace was fantastic, I took about 6 weeks off and they paid me the whole time without taking any of my leave. They are very understanding with all the appointments but I also put in lots of extra hours to get my work done. I am doing well at the moment and they have increased by workload a little too much. No one in my office realises that I will most likely die from this, I find people don't know much about metastatic breast cancer unless it has affected someone they know. I am not going to explain to them that my condition is terminal unless I need to.
I have had to change by career aspirations. I used to strive for advancements and promotions but now I feel I need to stick with a job that has income protection and understands my situation. I don't feel I could start with a new employer and have the flexibility I need to attend appointments. I do hope that my current employer will still consider me for promotions but I think it will be unlikely. I'm struggling with when I should consider giving up work, part of me thinks that life is too short to spend behind a desk, however I only have income protection for 2 years and will only be able to cash in my insurance when i'm deemed to have less than 24 months to live, I hope to be around for a few more years yet so will continue working while I feel well. My dr's are surprised that I still work, but having metastatic breast cancer doesn't stop the bills coming in.
Overall people have been lovely and I know I am extremely lucky after reading some of the experiences on here. I do get a lot of unwanted advice about my diet, opinions on what might have caused my cancer, stories about someone they know who had brain tumors and is fine etc etc. I try to just smile and remember that in general people either mean well or just don't know the right thing to say.
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Hi Lumpie,
I am so sorry to hear that your employer was not so supportive,they should be more sympathetic because we are as valuable as the other staff and we work the same as they are.
I took a disability (SDI--California which is 55% of what you made in the last 12 months divided into quarters and they calculate and base it from the highest quarter,there was a waiting period of 1 week from the start of disability) 06/30 to Nov.30,2017 and my employer and supervisors were supportive,some of them also had cancer and experienced the same regimen and side effects as I did. My husband carries my medical insurance though,I do not get it from my employer.I went back to work full time 12/01/2017 to 11/19/2018 and had another cancer recurrence above my collarbone and I started CHEMO 11/19 and took another disability 11/20 to present,lots of harsh CHEMO complications and am planning to go back 06/01/2019,hopefully no complications if I start radiation by May.
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I am my own employer and I am on disability. I got my diagnosis 3 months after signing a lease on my first retail spot. I have a small art school that I was running by myself with an assistant.
I am unmarried and I don't have children. My path would have been different for sure if I was/did. I feel awful for women who are working so hard just to keep their insurance for their kids. It makes me so sad because I can't imagine having to be a consistent 40-hours-a-week worker. If I am up and on my feet form more than 4 hours I'm tired -- if I push it six I'm in pain -- any more than that then I can't get out of bed the next day. This is just fatigue & pain-- what about all the gastrointestinal problems and the cognitive problems?
I used to be able to teach all day long -- on my feet. Well that plan fell apart! Right after my diagnosis I went to an MBC support group and the women there told me to apply for disability NOW because if I wait it will be harder. I guess if you wait, it is harder to get unless it is linked to a big change -- like starting a new treatment. So I applied and got it. Because I have a business they were harder on me and I'm still provisional in a sense -- they will be checking in next year. They said 'How can you be disabled if you have a business?' And I broke into tears -- I told them I had a lease I couldn't break. Tears and bad language somehow did the trick and they wanted me off the phone so they sent me paperwork.
The last 2 years have been crazy but I have kept my business open. I suddenly had to hire people to do my job -- I wasn't ready for that and I was too sick to train them. It was bumpy, but I just kept doing what I could and 2 years after diagnosis I am still doing it. I got into debt to pay my employees but we're finally seeing the light. I lived off of the charity of family and friends until I got disability. Now I have the stability of $1400 a month coming in. I think I'm allowed to make $1100 on top of that through work.
All I care about is that the business can support itself because it brings me joy and keeps my mind active. We are starting to be profitable which scares me. I fear the gov't will say, 'you're obviously fine' -- but they won't understand that I can suddenly be very, very 'un-fine' at anytime. If they say I have to give up the business to keep my disability income, I will -- because I can't pull it off without that stability of guaranteed income.
If my business starts being more stress than joy I will also give it up. I don't want anything stealing time or health from me.
p.s. About insurance-- Before my disability came in I was poor enough for free health care. Because of a cost of living increase my second year of getting disability income, I was $20 over the limit for my health care (there was still no profit from the business). Regular insurance co-pays would have killed me. I found out about BCCTP - the Breast and Cervical Cancer Treatment Program -- it gives you 100% free Medi-Cal without the income limits for as long as you are in treatment. It was difficult to figure out - I was on the phone with so many social workers who knew what i was talking about but could not agree on how to get me enrolled. Eventually I found free legal aid and they figured it out in a day. It was the greatest day ever -- I could get my Ibrance refilled!
When I've been on disability for 2 years (I think), I will be manditorialy switched to Medi-Care.
p.p.s. I live in California and things may different state to state.
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Hello all! Originally diagnosed in 2011, mets found pretty much everywhere (long story) Oct 2019. I'm a veterinarian and worked part time from August until that October diagnosis, then was off for a month, followed by another month of part time. My boss has been fantastic. Because I've had progression on several chemos I'm frantically trying to teach the younger docs at my practice how to do all the things that only I know how to do so that whenever I'm unable to be there, they'll still be able to do the things I did (mostly the more complex surgeries). I will work until I can't work anymore. So far SE on the failed chemos (Halaven and Verzenio) have been very mild. I feel absolutely fine. We'll see how I do on Xeloda.
I am very lucky with my work and how good I feel. I'm homicidally livid that I'm in this position at all.0 -
Dear drwendy,
It is good to see you here and thanks for sharing this part of your story. We are very sorry to hear what is going on and hear how livid your are. Please keep us all posted on how things go. We hope to continue to see you around the boards.
The Mods
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I was dx stage IV de novo at age 26, I'm 34 now. I had been with my job as a dialysis tech for about a year. My old boss was really good to me about my treatment schedule and doctor appointments. My new boss forced me into a desk job and treats me like an inconvenience. When I had radiation a few months ago despite me making arrangements with her and the other staff that I'd have to leave about an hour and a half early for 3 weeks she would make remarks about what an inconvenience it was and sent out emails with other coworkers cc'd asking if I could communicate my schedule better so everyone knows when I'm coming and going. She also inferred to me that I wouldn't have cancer progression if I stopped eating sugar and carbs. I've been on FMLA recently for pain control and liver complications. I go back next week and she's already annoyed I need a half day off 3 weeks a month for chemo. My coworkers are good to me so I can't complain there. I enjoy working, it gives me a sense of purpose and socialization. However I don't feel secure in my job anymore. Time will tell.
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I just saw the request for an update, mods - thanks for asking! So I decided to not go for that "dream job," as I realized I've changed, and being a full time classroom teacher is not me. I love teaching part time. Last year I had just finished chemo and had a BMX, and my boss was reluctant to hire me for two days at our enrichment site. Working one day was fine, though financially half my previous year's income. This year I have kept my mouth shut about mets, and I will be working both days. Scary part is that I am changing meds now due to mild progression, and onc originally wanted me to do Abraxane. I pushed for Navelibine or a trial for sacituzumab. I meet with him today for final decision. And I go back to work next week. I love my job and need to have the health to stay there. I will maybe do a arcane or AC next spring if needed. I will continue to do acupuncture, as that helps with fatigue a ton. I wish I could find a program that would pay for acupuncture! Frankly, I don't have time to work FT. I homeschool my kids and support my aging mom and have all my own appointments and run the house. I've made a huge commitment to just caring for myself in the midst of all that - walking, acupuncture, massage, meditation, nature time, journaling, and prayer.
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selkie, just having home schooled children and running household I would class as a full time job.
Working part time and having cancer is another full to the brim one.
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yes, indeed. I am full.
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Hello All!
I haven't been on this site in a while but what a great topic! I've been busy living life but now here I am working FULL time and dealing with mets - again!
I was first diagnosed in 2009, had a mastectomy, chemo and radiation. A few years of Tamoxifen and reconstruction, fat grafting etc...
Fast forward a few years (2013) and increasing tumour markers led to a bone met in my right femur. More radiation and a change in meds and life goes on...
I did all this while NOT working. I was a stay at home mom and my kids were still teenagers in high school.
Now the kids have moved on and I thought it was safe to go back to work. I worked part time for 2 years and last fall I started full time.
All my PET scans since 2013 have been clear until a "shadow" appeared on my PET scan (tumour markers are still in the normal range) last year. It's been there a year and hasn't changed - yearly PET scan in Sept confirmed it. Initially drs (onc & radiologist) thought it might be arthritis or an injury but a recent CT scan has confirmed it's cancer.
After working at a job I love for almost a year I get DX'd with another bone met - this time in my sternum and again on my right side. I point out the side since my original breast tumour was on the left side.
I have told my HR Manager who is also my direct superior and she's been very understanding - having been through a similar process with Lymphoma years ago.
I have also told my co-worker since she'll pick up the slack if and when I do take time off.
I haven't started treatment yet but have consulted with my rad onc over the phone and been told that I will need another round of radiation (5 sessions) to zap this spot.
I'm hoping to start by end of November. I'm not trying to be light about it but I have a family vacation coming up (sunny So-Cal) and we were all looking forward to it. Also it's my second time at the rodeo so I'm waiting until after that to start my treatment. My drs don't seem hurried so I'm taking my cues from them and how I feel.
I do have to start before December since I've agreed to participate in a study - targeted high dose radiation for mets - and will continue to be followed for another 5 years. And again a change in meds after radiation is done.
BUT I honestly do not feel any different that I did before this spot showed up.
I guess I'm lucky since my employer has been very supportive and understanding and since I've been working long enough (and full time with excellent benefits) I can take advantage of whatever time off I have coming and disability time if needed. Knock on wood that won't be necessary!
I have not used any sick days - I don't usually get sick not even colds - and still have vacation left even after my family trip. Also the timing could not have been better - yes you read that right - if I delay my radiation I should hit the fatigue wall right around the time that we close down for 3 weeks for the holiday break!
Even though I've got another bone mets to deal with I don't feel like cancer is beating me. I don't feel like I'm beating cancer either but I've been very fortunate to have a dr that follows me closely, scans me once a year, and jumps on anything that needs attention.
For me this is a chronic disease that I will have to deal with for the rest of my life and I intend to keep living and working for many years to come!
I'm sorry that some of you are having issues with your employers/co-workers but in my experience until they walk in your shoes they just won't get it.
I wanted to share my story to give others encouragement and inspiration that living and working with mets can be done.
Hugs,
Marie
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And Marie, that you have done (to provide encouragement and inspiration!!). Thank you! We are with you, and routing for you to stay strong during treatment! Thank you for sharing!
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Sorry to hear about your ordeal. So question...how long on Tamixofen? Were you moved over to Femara? I had the same protocol chemo rads Tamoxifen for 3 years then 7 on Femara I'm just over the 5 year mark. Going in for hopefully my final surgery post DIEP to fix dog ears and fat grafting tomorrow! I've been having some right side rib pain 3 months and just had CT waiting results hope its just a workout strain.
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I'm also a physician and I have told a few people at work, on a need to know basis. So far, except for some pressure to come back sooner than I felt comfortable, I've been treated well. Only a couple of people know I'm stage IV. I want to keep things as "normal" as possible. I used FMLA leave for my mastectomy and recent hospitalization after I passed out and broke my fibula, and I'm checking into the long-term disability the health system I work for offers, in case things get worse and I need to use it. My major problem is some bone pain and A LOT of fatigue. I have had some radiation treatments, and more are planned, so I will have to schedule around them.
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Hey all
Here in the UK we get statutory sick pay if you don't get ful pay or whatever on sick. Mine running out shortly anyway had meeting at work thry hsve decided that they are letting me go on health grounds which completely agree on i mobilise with a stick I have crushed vertebrae and hsve lot of pain there do I find making bed difficult so role's of my job I would not do thry said in future if I'm any better there jobs there xxx
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Supreme Court to look again at whether teachers at religious schools are 'ministerial'
18 Dec 2019
The Supreme Court will consider how much leeway religious organizations have in firing their employees in two cases from California filed by teachers who lost their jobs at Catholic schools.
One teacher alleged age discrimination, and another, now deceased and represented by her husband, said she was fired after informing the school that she had breast cancer.
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- I hsce been let go on health grounds from 12th December after my six nonths statutory sick pay ran out im fron the uk and was a home care assistant. I could not do ny job i know thst as i walked call to call strugglr with back osub plus joiunt pain due to lethzole so ax well as walking moveing and handling of ckiebts i could not manage due nsture ny conditions msy not br able to work in thst role again and I loved it so going to yhinj outside the box maybe when nore stable kess pain liok into Councilling as love to help people and care for thrn xxx
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I was diagnosed in 2018 with stage 2 IDC. I'm an ICU nurse and my employer was wonderful. My coworkers donated ETO and set up a raffle that generated almost $5K towards my medical bills. In December of 2019 I was diagnosed with stage IV MBC. I am at the same employer but had recently changed positions into our step-down/IMCU unit as I was fighting "chemo brain" and did not feel safe taking care of very complex ICU patients. In IMCU I am able to be a charge nurse and preceptor which also lightened the physical load for me a little bit.
I had surgery on Dec. 12, 2019 with an IM nailing of my right hip. I am still out on FMLA and my boss has been wonderfully supportive. My short term disability has been denied because I didn't have it in 2018 so I am falling into their "pre-existing" clause by about three weeks. Again my coworkers have donated some time but I will have drained my savings by the end of February and will need to return to work to meet the bills. I am trying to figure out if this is my curtain call for being a critical care nurse. I still walk with a cane and fight a lot of fatigue. Towards the afternoon I become very painful and I have a met at T8 that limits my ability to lift so I would not safely be able to assist a patient up or do compressions in a code situation. I could potentially still do the charge nurse role but there are several of us trained in that role and I would not be able to do it exclusively. I have been well treated by this employer and have some hesitation about leaving and applying for a job with an new boss and coworker dynamic having a stage IV diagnoses. I am pretty well known throughout the hospital now and have had a lot of support so I feel a sense of loyalty there also.
I am looking at other jobs within the hospital I could do. I have never been trained as a chemo/infusion nurse but now have a personal interest in it. I may also end up doing more of a desk job. I am in hopes that my physical strength will rebound enough to be able to work part time in my current position but if I become immunocompromised that may pose too much of a risk. I just have a lot of things about my job that feel unsure right now and that is unsettling.
I see some talking about applying for SSDI now as opposed to waiting. I am 42 so I don't know that I would qualify for much. I don't really know anything about it and also feel that working would be healthy for my mind and mental health at this point as well as being financially necessary. I need my insurance or these medical bills will financially devastate me. I had intended to wait on SSDI until I am at a point where I can no longer work. I would welcome advice on that.
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emac877- I am PM'ing you.
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I had to quit my job (PT teacher) for WBR and subsequent recovery. I worked for 1 1/2 years without my coworkers and boss knowing I had MBC, which was required to keep my job.
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I consider myself a super thriving IBC survivor. Diagnosed in 9/ 2016 have worked full time as an RN, and employer pays for my treatments as long as it stays within the hospital system. I have worked around all my treatments, radiation, surgeries, and presently scans, tests and targeted treatments. I feel unfortunate to have this chronic disease, but at present, lucky to be in the place that I am. Working gives me something to live for, and at the same time keeps me alive without draining my life savings. If something were to change I would go on disability, but I would always find an outlet to motivate me.
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I was diagnosed with recurrent breast cancer, stage 4, in early March when I presented with a metastasis to my eye. To make a long story short, I was staged and had mets in lung, liver, bone and eye, initially found to be hormone receptor positive. I was started on anastazole and verzenio but the eye lesion continued to grow - I then had external beam radiation therapy as well as an oopherectomy/salpingectomy. Ultimately, my visceral lesions worsened and I presented with increased shortness of breath. I was immediately started on taxol and my oncologist feels that the visceral tumors are hormone negative.
Fast forward to early July and I am out of work on disability and have just completed my first cycle of taxol with improvement in my breathing.
I just can't stop focusing on work (I'm a pediatric subspecialist). I worked 3 days a week from March-June and stopped with chemo as I still had a ton of doctor appointments and wanted to see how taxol treated me.
Part of me wants to try to get back 3 times a week but part of me doesn't want to risk my LTD. Frankly, with COVID, I'm not certain that I want to risk my health and am concerned about the innate stress of my job. I don't want to work, sleep and work. I know I don't have long and am wondering if this is the time that I focus on myself, friends and family.
I'm good at what I do. I enjoy working with patients and would have progressed into a leadership role if this hadn't happened - but it did.
Anyone have any thoughts? I have been through a number of treatments in 4 months and most likely will just need more time.
Thanks
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Bmpntherd. It sounds as though you have been through a lot in the past few months. I know how hard that can be. It’s also challenging to make sense of one’s career if you enjoy the work and you are uncertain about what you really can handle because treatment results are just becoming apparent. I agree with the fears about Covid and if you were working with children who are not yet vaccinated, it is certainly a significant issue. So my thought would be to continue on the long-term disability for a while longer. With more time you’ll know whether you can go back to work and how much. Sending healing thoughts your way.
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Hi All,
The work issue has been the hardest thing for me to deal with by far. I am 4 1/2 years into my MBC diagnosis and continue to agonize over making the “right" decision regarding work.
As a single woman, I have invested a lot of energy into my career so giving that up is really tough. While I have continued to work (full time until recently) I definitely felt the fire go out of my belly in terms of continuing to advance. I knew taking on additional responsibility and the stress that comes with it would be dumb (my job is very demanding, requiring a high level of responsiveness particularly as one moves up the ladder). At the same time, I enjoy work and think it’s best to stay engaged and active.
However, the flip side is that treatments and the disease start to take a toll after awhile. I found last year that my fatigue levels had gone up drastically which made it harder for me to think on my feet. My short term memory was definitely suffering. I decided it was time to reduce hours to give my body time to rest. I’m fortunate that I have access to LTD so reducing hours was an option. (Although I am horrible about sticking to my “work hours”. My job is simply not conducive to clocking out at 4:00 PM.)
The tricky thing about this diagnosis though is it’s not a straight line. More recently the pendulum swung the other direction. I had a good response to treatment and my MO has me off treatment for now, believing I am in partial remission. So, here I am with no side effects after many years dealing with one issue after another. Most importantly, the fog seems to have lifted and I have some of my sharpness back.
This leaves me in a bit of a quandary. I was almost ready to call it quits at work. I feel strongly that, as much as I enjoy work, I don’t want to be working to my last breath. I want a couple of years of “retirement” when I can do what I want when I want. But now what? Do I go back to full time? Maintain the status quo? Not working doesn’t seem to be in the cards for the moment.
I find this roller coaster so daunting. I’ve lost more sleep trying to figure out what I should do… and still don’t seem any closer to resolution.
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