MBC and working
Hello sisters
I’m new here and just diagnosed stageIV. Has anyone with this stage and still working?? I am a RN and single mother and I have to take care of my 11 years old daughter😭😭
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Fighter00, I'm sorry you are here :/ . I was dx stage IV in November of 2019 and I work full time . I am a real estate broker and am self employed . When I was dx my oncologist told me to see how I felt on the medication before making any "big changes " like quitting my job . I followed her advice and am happy to tell you that once I got used to the meds (ibrance and fulvestrant ) I feel pretty normal and am not too fatigued to work and enjoy life . I work a lot of hours and have kids, like you but my kids are older (now 24 and 26).
However, it's not the same for all of us . You might want to see if your employer offers any long term disability or other benefits where you can work less hours but not take a huge hit in income . If you work for a hospital or corp they may have someone in HR that can help you find out what options you might have .
Hang in there !
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I was recently diagnosed at stage 4 and plan to work as long as I can. I have a desk job though. I've just started meds so I can't predict what the side effects will be, or how my symptoms might impact me. I'm 51.
I'm cutting back expenses right now though, in case circumstances put me in a situation of needing long term disability, or perhaps medical retirement, down the road. I figure that I might as well get into the retirement mindset in case it happens. I've been with the same employer for 25 years.
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Hi Doodler, I happily continued working for five years after MBC (head to toe Er+PR- bone mets) and then retired basically because of the Covid shut down. I think it was critical to having a sense of normalcy, I did not tell folks at work because I wanted to be treated as usual, and that worked great.
During that time, I read of a woman who died of metastatic colon cancer just a year after she had been hired as president of a middle-sized college, and considered that she may well have known of the seriousness of her disease at the time she took the job, but decided nevertheless to take a chance and live out her dream.
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Thank you ladies
I’m happy to see all of you continue to work after MBC. That’s my only fear
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@fighter00 I want to emphasize that I'm working and feel almost "normal " . Like Cure-ious mentioned, it helps me keep a sense of normalcy. I love my job and like to be busy . I have been able to slow down a bit and take more vacations (despite Covid !) .
It took me a few months to get my "new normal sea legs " with this treatment. I recommend you give yourself grace , as I'm sure you know :) Now that I am in this club I am amazed at how many stage IV women are out there working and living life.
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Though I am now retired, I worked for ten years after my mbc dx. I looked fine and felt relatively well so I in no way considered myself disabled by bc. I also adored my job*, and would saw no reason not to work.
Clearly whether one works or not at stage IV depends on your overall health and how treatment affects you. If you like your job and you are able to keep working, why not?
* I was a teacher and I still sub a couple of days a week.0 -
work part time
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I’ve been working full time the 8 years since dx. Hybrid work since COVID had been a great help. My oncologist told me not to quit my job right away as I could very well live two decades with this.
I’m a single mom to a 14 year old.
I’m thinking hard about retiring now at 50 though. I’ll only have my son home for another 3.5 years and while I like the normalcy that work provides, I’m quite tired at the end of the day and he isn’t getting g my best self.
hard to choose though,
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I'm now a few more months into this… diagnosed December, and just did a short round of radiation (5). I'm now feeling as wrung out as an old mop, I am so exhausted, mentally and physically, and I'm questioning the wisdom of continuing to try plodding along at work. My focus is scattered. The constant and unpredictable nature of appointments, tests, results, medication adjustments, has been getting me feeling more run down.
I suppose I might need a break from work, but feel guilty using the vacation time I'm owed. I've burned through a lot of banked sick leave already. I feel guilty about my absences, although I get support at work which is greatly appreciated… I'll see how the next few weeks go. Maybe things will improve.
Didn't mean for this to be a rant. It's rough at times though.
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If anyone has MBC in the US (sorry to doodler in Canada), be aware that you can apply for Social Security with an easy on line form. Mine was approved within 10 days under a “Compassionate Allowance” principle so 5 months from dx I began receiving the $ amount that would have been sent upon reaching full retirement age. After 2 years, Medicare is available.
The problem is maintaining health insurance until then. There is a topic regarding employment & financial issues on this website found under Managing life with cancer. I was extremely fortunate in 2011 to have a husband who had excellent coverage via his job. I used FMLA=Family and Medical Leave Act to take the summer off in order to avoid infections.
Because I wanted to keep other benefits in place at my part-time position as a pharmacist, I specified that 2 hours of vacation be deducted each pay period. Although losing those days was hard since they didn’t accumulate very quickly, it was their best use at that point. Don’t feel too guilty about taking what you need now especially banked sick leave!
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hi everyone,
i'm living in Egypt and i was diagnosed with stage IV just 3 months ago. i'm a freelancer/self-employed, and i love my job so i kept doing small tasks when i was able to as i was recovering from spinal surgery and getting used to the medication..it keeps my mind off of dark thoughts and give me a sense of normality. the fatigue is less right now and i have more energy to go back to work fully - but i hope i can keep it to 4 days/week instead of 5.
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I am glad I found this thread - @fighter00 thank you for starting it. I appreciate reading about everyone’s experience with working.
I am currently contemplating returning to work after about 9 months off. Gradually at first, but eventually getting to FT. Physically or mentally, there is no reason why I can’t…or shouldn’t. I get H&P injections every 3 weeks and have minimal side effects. Emotionally, on the other hand….
I am feeling quite apprehensive about it. I struggle with trying to put my feelings into words. It’s like, I don’t want to stay in this sad, dark, feeling hopeless place, but I don’t know how to not stay here, if that makes any sense. I think I am having trouble adjusting to, and accepting, my new normal. I so desperately want it to not be true. Although, I do know how important it is to have that sense of normalcy as some of you already mentioned.
Thank you for listening.
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dear @harrow i am really sorry that you're finding it difficult to emotionally adjust to this horrible reality…i think you have all the right to feel the difficulty. i'm still trying every single day, some days are better than the other. what works for me emotionally is to plan things to look forward to, but in the near future - because far away plans makes me sad because i can't shake off the feeling of 'i don't know how long i'm going to be here for'. i also work from home and it helps not being in a place where i can't rest when i need to, cry if i feel like it or just be upset in my space without worrying about how others will react and what questions they will ask. i find it difficult to be around big groups or with people i can't be myself with. i feel too vulnerable at the moment and i try to surround myself with people who will accept this.
it takes time…take it one day at a time…and consider changing workplace/work field if that would make you feel more comfortable…and as some people said here on this platform, it will get better. it was hard for me to believe when i was at my lowest point, but one day i woke up and i felt less gloomy and maybe almost forgot…then it comes back again…etc…i feel it's going to be a cycle and i need to accept that some days will be so heavy and i might need to take a sick leave for emotional reasons, and other days i'll be up and running feeling hopeful.
sending you so much love and i hope you experience better days. thanks for sharing <3
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Thanks ladies for your replies. I think working is my best therapy now. It keeps me busy and a sense of normality . I plan to continue until I can’t anymore
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@radiation_cinderella thank you for your response. Your reasons for working from home are some of my concerns as well. When in your treatment did you go back to work? Like cure-ious, I have not told anyone at work except who was required to know for my leave. It’s encouraging to hear that those who work find a sense of normalcy and are able to mostly carry on as before their diagnosis. I’m a bit of a superstitious person, even though intellectually I know there isn’t much to it, but I feel like if I go on living my life normally as I did before, I’ll jinx things and the other shoe(s) will drop. I do know how silly that sounds…especially considering there are many people who live many years with MBC
I am with you though about being unable to shake feeling sad about not knowing how long we have. I, too, find it uncomfortable being around large groups of people I wasn’t like that before. Now it gives me anxiety. You’re not alone.
@fighter00 are you still working through treatment? I like your point about how it keeps you busy. Being busy might be a good thing for me to help me think and focus on other things.
@exbrnxgrl your story provides me with hope that it is possible to live (and work!) for many years with MBC. Thank you for sharing!
@jensgotthis I wish my MO would say things like I could live with this for decades! How encouraging! I also have teenaged kids and have thought about how I want to spend the rest of the time with them while they’re still at home.
@doodler how are you doing with the fatigue? I hope it has improved for you.
I’m sorry we’re all here. Thinking of you all.
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@radiation_cinderella sorry, I see that you already mentioned that you continue to work by doing small tasks. That’s really amazing! Especially given the spinal surgery and the unknown of the potential side effects from the meds. Thank you for sharing your experience.
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I work part time 3 years on from my stage IV dx, I think it depends on your job and general health and how you tolerate the medication and what age you are.
Nursing is a hard one 12 hour shifts a lot of mental concentration needed.
There can be cognstive issues from tbe medications.
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Jen, I also perked up that an MO would say "decades", yes please! Tho you fear you may not be at your best for your son after work, imagine how freaking impressive it is for him to have a mom out in the workplace despite MBC?! Incredible. Nevertheless, retirement is a blast, so if you are ready, go for it!!
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@cure-ious I hope you don’t mind if I ask you a few questions. I am wondering how you felt about returning to work when no one knew about your diagnosis? Did you find that people tried to pry when you returned or did they just welcome you back and say they hope you’re doing well? I am also nervous about wearing my wig at the office. I really don’t want people to know and my really short hair is a telltale sign of what is going on so not wearing it isn’t an option for me. I’m super paranoid that people will be able to tell. Did you wear a wig when you went back?
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I'm 41 and I was an organic fruit farmer.
I really liked my job, but having my axillary limph node removed and 3 collapesed vertebrae, craaaaazy pain....I had to quit.
I'm now very well recovered, and got used to the meds, but lost my farm.
So I'm living with a small state pension and a vintage and jewelry shop on Etsy, that make my financial life a little easier. Try to keep every expanses at the lowest, grow my veggies to eat better and save money.
Also in this way I have more time to spend with my 3 year older! And it is my favorite thing to do! I have more time to read and draw too.
So at the end not regretting leaving my job, although I liked it and brought more money.
I think whatever make us feel better we should do, if finance status permit us.
(I was also on Ribociclib and letrozole and afyer 4/5 cycles become way easier).
Thank you everybody to share theyr experience.
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Hi all! Great topic. We wanted to share this page with you that you might find helpful:
We hope this helps!
—The Mods
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I am another one who prefers to work. When I was first diagnosed, I NEEDED to work instead of staying home everyday thinking about this mess. It would have killed me!
I do hope to make it to retirement age which is when I probably will retire (62).
I only work 25 hours a week in a public school so I have off summers and lots of weekly vacations and holidays. That makes it a bit easier to keep it up. I have also been at this job for 20 years so I have about 7 months of sick time to use, thankfully. I work with children ages 5-11 and it's great to get so involved in teaching these babies what they need to know and forgetting about my reality at home. For a while, I didn't want to go home after work because it reminded me of MBC and death.
I have not told anyone at work about this. I don't want anyone to treat me any differently. And then there would be questions when I'd rather not have a discussion about my health during working hours and then having to listen to other stories about somebody's aunt, cousin, neice and why is my treatment different and I should try their treatment. I didn't even tell people when I left work for two months in 2021 to have a double mastectomy. There were some people who absolutely respected my privacy but there were also some who tried very hard to get the information.
Hang in there everyone.
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dulcea,
I was stage IV de novo. I was fortunate and despite mbc have had a relatively easy time of it. I was on medical leave for 3 1/2 months and was so bored at home that I couldn’t wait to get back to the classroom. I worked for 10 years after my dx and retired at 65. I do realize that I have been fortunate to even have that option . I still sub 2-3 days a week and love the energy of a classroom. If one’s health allows and you love your job, working is wonderful.
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Harrow, Oh, you are right, it was obvious when I had cancer the first time, and yep, wore a wig and all of that. Its the metastatic diagnosis I did not reveal to anyone other than one close friend, and was very glad for that, I could just go into work and have a normal existence, it meant a lot! It does not help anybody to have people look at you with pity or ask you every freaking time they see you how you are feeling…
Having said that, I was already the head of the lab, so I could come and go without explaining my hours to anybody which obviously makes it a lot easier. I worked five years with Stage IV, and now its been four years since retirement, it goes fast
PS I did have the stylist remove A LOT of the hair on the wig, I thought it looked too fake esp as my natural hair is thin, so consider that, and then I guess people get used to seeing you wear it…
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@exbrnxgrl that is great you could work for 10 (!!) years after diagnosis. And thank you for continuing to sub. We are so short on substitutes!
@cure-ious exactly! I don't want pity or help either and I don't want to talk about my disease.
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I missed the replies on this somehow. Sorry about that!
@cure-ious that’s exactly how I feel. I don’t want my diagnosis to be what people see and think when they see me. I just want to be me. Although, I feel like I’m not sure who that is anymore. I’m not the same person I was pre-diagnosis.
@dulcea thank you for sharing your working experience as well!
@amel_83 I’m sorry you lost your farm but I’m glad to hear that you’ve found a silver lining in all this - more time with your 3 year old and reading and drawing.
Does (or did) anyone feel like they’re pretending when they went back to work? Like, how can I restart my regular life as if nothing has happened? It makes me feel like I’m putting my head in the sand or something. How long did it take for you to feel more “normal”? All the uncertainty that comes along with this disease is very difficult for me to accept. It’s a work in progress for sure.
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harrow,
I have no great words of wisdom. Despite the uncertainty, once my medical leave was over, I knew I simply couldn’t sit around and wait for the other shoe to drop. That would have been tantamount to putting my foot in the grave before I had to. None of us know how the course of mbc unfolds so I simply decided to start living and not sit around waiting to die.
I was very fortunate and unlike many here who wish to keep their mbc private, I encouraged folks to ask me about it directly. Firstly, I didn’t want to give cancer more power over me by treating it like an unmentionable secret. Secondly, by being completely open there were no rumors, gossip, nor any type of pity. I set the tone that bc is nothing to be ashamed of or talked about in whispers. It’s a disease that needs to be treated, period.
The response? Kindness, compassion, and lots of food!
I understand that not everyone is comfortable being so public. It’s a very personal choice. Since I am comfortable, I aimed to remove some of the stigma surrounding cancer in general and bc specifically. I do think knowing your audience is important. I was a teacher and my school community is very close and supportive of families and staff. And doing that is what got my life back to a new normal (let’s face it… pre-mbc normal is not coming back). It’s different for each of us but like all major life changes, you put one foot in front of the other and go forward, even in very small steps if needed.Take care2 -
@exbrnxgrl thank you for taking the time to respond. I always find your posts to be a nice, gentle reminder for me. I don’t want to live waiting for the other shoe(s) to drop. I really don’t. There is no physical or mental reason for me not to work and I do want to have more of a purpose to my day. I hope I’m emotionally up for it. I find myself being much more teary about things than I ever was before. I admire you, and others, who feel comfortable sharing such a private part of your life. I also think I would be shown kindness and compassion; however, I just can’t bring myself to share. I don’t know why. I feel that way about a lot of things that have happened in my life for some reason.
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Me to I didn't tell nobody what I got than 2 very close friends...I will may be talk about in the future but I just don't feel like it at the moment. It also help me to forget about my MBC when I'm in company.
About working it took me 6 months of opening and closing my online shop numerous time, as I felt like I was going to die in a couple days 🙄, didn't feel like to go to the post office to ship, etc...now I didn't even close it when I had a liver progression...I just want to be back to normal as much as possible. Knowing progressions and therapies will be there till the end, hopefullyfor much longer...
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