I have a few question about lifestyle changes and MBC. I am working through so many thoughts about what I want my life to look like going forward . Ironically it took this diagnosis for me to even believe I have a right to creating the life “I” want and still be a good mother, daughter, sister and friend
1. I was wondering how many of you are still working full time?
2. Those of you having lived with MBC for quite sometime, did you make a career change post diagnosis and if so why?
3. If you quit or retired or changed careers, do you feel it was the right decision today? If not, what would you have done differently?
5. If you changed careers/jobs did you tell the new employer during the jnterview process? If not, did you after you got the job?
I am trying to decide next steps from a work/life perspective. I love working and need the income to round out my retirement. I am a “young” 66 and was planning on working until I was 70 or 72. My job is very stressful (but I love it). I do know I need to make a change because of that stress. How I do this with MBC and the uncertainty we all live with is a tough question. But I don’t want the MBC to define the rest of my life! I recognize there is no cure just like Rheumatoid arthritis, or Diabetes, or Crohns but it can be skillfully managed, just like we are ALL doing so beautifully now.
I truly appreciate any feedback you can give me. I value all of you on this site so very much. I am amazed every time I get on and read the posts and responses, they are so full of compassion, love and wisdom. WOW! We are amazing humans, us MBC “thrivers “.
Have a wonderful weekend! 😊☀️😊
CalGal
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CalGal56
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This is a great topic . I completely agree that I don't want MBC to define the rest of my life but the reality is that even if we have stable disease we are working around the specifics of our treatments . We also know that at some point, our disease will get worse....we just don't know when.
1) I work full time and am 59 . I am a self employed real estate broker and have been one for 12 years. I am a successful broker which means I work A LOT. I work for a large, international brokerage but 99% of realtors are self employed which means we don't have benefits or long term disability type insurance through the brokerage. I mention that because I think it factors in to many of the decisions we make . I was dx MBC when I was 55. I asked my oncologist if I needed to quit my job and she encouraged me to wait and see how I felt on fulvestrant and Ibrance. So, I waited . I also didn't broadcast my MBC dx. I told my immediate Branch Mgr that I had a health issue crop up. He asked if he needed to worry and my reply was "not yet ". I was dx fall 2019 and have had my highest $$$ of sales in 2020-2022. I am so happy I didn't quit . I planned on working until 63 but with MBC might slowly phase out my career. I am mentoring a new broker in hopes I can refer business to him and maybe work less .
2) I started my real estate career after I finished my stage 1 breast cancer treatment (2010). I am married and we have 2 kids. Our son is 24 and has autism , relatively high functioning. He has not fully "launched " . He has been working at our local grocery store but is going back to school in Sept. My husband and I are hoping to get him in a higher paying career so he can support his own independence . My income helps this a lot !
3) I haven't quit and gone on ss disability because right now I make really good money and love what I do - it keeps my mind off of my "worries". If and when I need to change meds , I may need to stop working and that is never far from my mind. If I worked for a corporation and had long term disability insurance , I might have retired since that would pay more compared to ss disability.
5) I only told my direct branch manager and that was back in 2019. I work with a partner and she knows I had a recurrence but doesn't really get that it's stage 4. I look the same and honestly after 4 months on treatment starting feeling pretty normal, which is a blessing . There is no shame in our dx but I don't want it to be the main topic of conversation and found people very concerned way back in 2008 when I had stage 1 disease . Sadly real estate can be cut throat and I would not want competitive brokers to use my MBC dx against me , either .
Biggest worry besides our son is health care insurance ! My husband's employer has great insurance , which is so important . He is 60. He doesn't love his job but we need to have his great benefits .
Sorry for the long reply ! If we had a Crystal ball it would be so much easier ! I love my job but if I knew I only had X months left on this treatment or to live , we could really plan .
For me, keeping as much normalcy in life while I am still feeling well is important. I, too, don't want MBC to define me for as long as possible. This is one of the reasons very few people in my life--including high school besties, in laws and other close friends know about my diagnosis. I work--albeit as a consultant. Since MBC diagnosis in 2019, I travelled abroad several times for pleasure and work--including to India, Japan and Europe. I was fine, even with side effects from Xeloda that trashed my hands and feet.
Horses are my happy place, and I am in the process of buying a new one that I hope to compete. I try to exercise and do what I can to stay healthy.
I hear you about stress, but maybe a way to think about it is there are different kinds of stress. If it's caused by doing something you love, it's not adetrimental to health in the same way as anxiety and stress due to negative emotions or toxic people and environments. (I think there are studies that prove this--but don't quote me) And in all cases, it's in how you manage it, right? You can wallow or you can swim. It's often a choice. And perhaps work stress will take your mind off cancer stress?
You say you "need" to make a change. Do you REALLY need to do that right at this moment? Or are you actually feeling OK for now, so are just assuming change is what you "should" do because you've been labeled as "sick?" If you stopped working, will it be to do more things that bring you joy, or will it just leave time on your hands and remind you what you lost due to cancer? You can always quit later if you need to. Or you can quit now if that's a positive thing and will, again, spark joy.
Do you need to tell employers? Hmmm. I just joined a board and didn't tell them...If I have to step down, they'll just have to understand in the moment, I have bumbled along for 4 years now, and unless I told you, you wouldn't know I'm sick. I would worry more about age discrimination if I changed jobs in your case.
My opinion is there no shoulds. It's about what works for you...how you're feeling...etc. You'll see that here--so many women, each with unique experiences with this shitty situation.
Well maybe you shouldn't jump out of a plane without a parachute or drink yourself to oblivion or run off with the mailman...
Unless he's hot, and you're both single, and... ok, I'll stop.
And in terms of how to live with uncertainty, let me know when you figure it out!!!
I am about to turn 60, so a lot of our friends are talking about retirement. They blithely assume they have twenty or even thirty more years to fill. As I said, most people don't know I have cancer, so I stay quiet, but it needles that my optimistic time frame is what can I do in four or five more years. Which is quite a bit if I play my cards right. Although ironically, feeling so well makes me even more aware of how much I will soon lose. And that can get me down.
I guess I cope in a way that is dubious--Denial. (it's the midwesterner married to a stoic Brit in me...) I stay on top of clinical trials and studies, but studiously ignore prognosis data, I skip over posts here about death, and instead focus on long term survivor stories and what I can do in the next few months to make the world better.
And horses. I spend an inordinate amount of time looking at horses for sale. 99.9% of which would either try to kill me, or are too expensive, or both. My family is ready to put ME out to pasture if I don't stop obsessing over it. But this may be my last healthy year, and I want a pony, dammit.
Bottom line is I figure I will deal with the inevitable when it stares me in the eye.
By the way, this isn't the same as toxic positivity, looking on the bright side all the time, which is f-ing exhausting. We can't be happy and shiny all the time. This sucks. It's really not fair. But it is what it is.
Buy the pony ! I know they live a long time and require a lot of work I grew up in the Bay Area I completely relate to your post . It is what it is and im trying to enjoy right now as long as I am able to. As I'm 59 and husband is 60 retirement and when and where to retire are hot topics among our social circles . I mainly keep quiet and have my 1-5 year plans in my head. Of course, our close friends and family know about my stage IV status and track my scans etc. I've traveled a lot while having MBC, just try to plan 6 months at a time for trips .
As you can see, it is individual, and each of us has different contingencies (like you have to provide for your son). I like my work; it is rewarding and compelling and I have a certain reputation that makes me proud, but when I was diagnosed and given a limited life span, I realized I want to do something different with those years, more creative, more fun, more self-centered. I got to be happy when meds were working well and I had little side effects, just doing things I love to do without spending so much time working. Unfortunately, I keep being dragged back into work. I keep not getting to some work I want to do for me. But that is me, and you may enjoy your work in a more immediate way.
I don't quite buy the analogy to rheumatoid arthritis or diabetes. They aren't as good at controlling this mbc, and it is terminal. Again, though, it is individual. Some people get 20 years (highly unusual), some 8, 9, 11... but some get less. All depends what variety we have and how it responds to treatment -- and the quality of life under different treatments can determine how long you want to stay in treatment. I guess that is why I am aiming to swim and dance and write as much as possible while I can, and ride, but not necessarily a horse of one's own. I did get a chain saw that I love.
I totally agree with the points made by others, especially the notion of how individualized each set of circumstances can be—from the family/career perspective, as well as how individuals react to various stages of treatment along the way.
In my case, as hubby and chief caretaker (and the more active participant between us, in this great group…) I will forever be grateful to a former active member who encouraged us to explore all of the disability options available. My wife had a pretty high-powered job, and tried to stay on top of it for a couple years. But as with many others, the fatigue and side effects were debilitating at times, even during her first 3+ year run on Ibrance and Letrozole. So two years into that run, she retired on disability. Now we are 6.5 years into this journey, she starts her sixth protocol on Monday (including some trials along the way) and we continue to be thankful that we made the choices we’ve made, especially as things have gotten progressively more challenging recently. She has been hospitalized four times already in 2023, for as much as ten days at a time…
To round out the story, I also retired “early” (at least earlier than I would have without her dx) 2.5 years ago and we moved back five minutes from our daughter, husband and new grandson. I loved my work (and still have a few different irons in the fire) but have appreciated the flexibility to be an even more active caregiver, especially as things have progressed. And our grandson just turned two yesterday and we see him nearly every day!
Ironically, beyond being Papa and Gaga, horses are one of our happy places as I know they have been for PB, Barb and others in this community. While my wife effectively stopped riding at the time of her de novo dx with bone mets throughout her body, she still loves visiting our barn. We’re down from three Friesians to just one, but our last horse trip to the Netherlands (midway through her cancer journey) will live on as one of our best vacations in 43 years of marriage!
We realize that we have been blessed with these years and that we have been fortunate to have decent insurance, which made these decisions possible. That said, cancer has played a major role in both of our daily lives ever since her dx, which I know others are trying (understandably) to avoid or minimize. My wife and I chose to be pretty open with family, friends and work colleagues about her illness—and have benefitted from their support. But we know others have made different choices and those were the right ones for them as well. Good luck as you work through this, it sounds like you’re on the right path for your situation!
Dear CalGal56 I understand how you feel. I have kept on working, because my work is my life's purpose (I design gardens for food and wildlife). However I am only able to work a couple of hours a day, if that.
Honestly, you may reach a point where you feel too ill to work very much.
My advice is to clearly tell your family and friends that your needs are now your first priority.
MBC is not a walk in the park. Put yourself first. Xx
Thanks for asking about these decisions! I've enjoyed reading the responses. I am a long timer, diagnosed with stage 4 lobular bc from the beginning 19 +years ago. I had left a very toxic work environment arouund a year before and was working 1/2 time in a good environment. I was diagnosed the month of my 58th birthday. One of the first things I did was to learn all I could about BC and MBC. I was fortunate to have a truly gifted woman onc who I trusted and liked. I'd been remarried just two years, and my husband's first wife had been diagnosed with an aggressive form of MS when they were married just two years. So I felt sad for him, but she'd taught him alot about being a caregiver and I know that he is always here for me. Any way, about six months into this cancer journey, I attended a weekend BC retreat that was sponsorred by the cancer center where I was going. I went wondering if there would be anyone there who had mets, and about 1/4 of the attendees did. Talking with them changed my thinking about retirement, and I retired two months later, We had great health insurance through my husband's employer, and we had enough money saved that we knew that we'd be fine while I went thru the waitiing period for SSDisability. I'd made an appt at the closest SS office for the first day of my retirement, LOL. It was for first thing in the morning and when I got there, the door was still locked and there were quit a few people in front talking about how long they'd been waiting for their appts, weeks and even months! I kept my ,mouth shut about having just called on Friday and getting the Mon appt! The women I'd met with MBC stressed mentioning stage 4 metastatic "terminal" bc, and that had gotten me that quick appt! One of the few great things about MBC! I don't remember why I'd called SS about 2-3 weeks later, and the woman I spoke with looked up my application on her computer and was amazed I'd already been approved! (This was before all the TV ads for attorneys specializing in disability income! WE do not need attorneys as metastatic cancer speaks for itself. Anyway, there is (I'm assuming fit's the same now as then.) a 5 month waiting period to begin receiving SSD, and it is actually 6 months until we start receiving it as each month's payment is for the previous month. And when in the month depends on when in the month our birthday falls. My birthday is in the last week of the month so my SSD arrived on the third Thursday of the month. I hope I'm not including too many details....I've been known to do that, LOL. Anyway, I have never regretted retiring when I did! But I have a husband with an income about the same as mine, good pension plans for both of us and great medical insurance. We both were single parents for a number of years and are big penny pinchers! So money and insurance have not been issues for us. Two years after diagnosis, we bought a new-to-us house on ten acres out in the country, with lots of trees, birds, rabbits, squirrels and deer that show up at least every week. The house was just what we wanted: at least three bedrooms and 2 baths, bedroom and bath on the first floor, air conditioning, 2 car or more garage, and a big "pole barn" (out building with plenty of room for storing and working on cars. We'd given up looking for our dream house and the next week our realtor called to tell us she'd just seen exactly what we wanted, on ten acres and about 3 miles from town. We were the first people to look at it and made an offer that day! Our house sold quickly and we were able to pay off our new mortgage in 5 years! Now, I'm ready to look for a smaller house on less acreage and much less in need of constant work, but my hubby isn't ready to do that. He has a collection of old cars, and belongs to a local tractor club and spends alot of time working on cars, tractors and other mechanical stuff as well as mowing our rather large lawn and other outdoor stuff. In the past few months, I've had to stop cooking, doing laundry and other housework after a 23 day hospitalization for a bowel blockage and being in bed almost all the time. My biggest regret is that I didn't push hard for PT during that time! I lost alot of muscle, strength and balance. I am finally walking in the house without my walker and occasionally with just a cane out of the house. I wish I had the strength and bsallance to do gardening! I have started helping with the laundry, putting clean dishes away, and showering without needing help. I love to travel, have been to Europe three times before cancer. We went on an Alaska cruise 2 or 3 years into cancer. Wonderful experience! We've driven from our home in Michigan to the west coast at least once, and flown there and to Texas as well. I've gone to bc conferences in Maryland, Washington DC, Indiana, Wisconsin, Texas, and probably some places I'll remember jusut after sending this message, LOL. I told alot of people that I have MBC....don't feel comfortable with "secrets" like that and have not been sorry. Surprising how many have had experience with cancer themselves, or family or friends. Alot of helpful suggestions and only occasional discomfort. I lost over 50 pounds since the bowel blockage and my weight has finally stabilized at about 25 pounds more than when I graduated from high school. So we've taken alot of clothes to Goodwill and I'm still sorting thru and getting rid of stuff. We don't want our 3 grown daughters to have to deal with it after we've both died. I don't think of cancer changing my life in bad ways. I just think of my life as it is and try to do as much that I enjoy. So, that's my response to your wonderful note! Probably won't take you as long to read it as it took for me to write it!
Bowel blockage? I now have a hernia. The day I was diagnosed, I read about the cause of Priscilla Presley's death and panicked. I thought I had a blockage after all the prodding and poking -- for an hour -- for the ultrasound. I don't. I am leaving for a two week vacation on an island far from my docs and hospital. My primary doc says it is okay. My house guests (they are arriving at my vacation house tomorrow before me -- yay, they can unload my packed car) are in total panic and think I shouldn't go. They think I shouldn't swim, as they are in no condition to save me. They are worried that I will start gardening.
This is the only bad thing I have gotten that was not due to the medications. I wonder, though. I have also gotten to be in pretty bad shape physically. I usually exercise a lot, but I haven't for a month for various reasons, and now this hernia. My primary doc thinks I won't need surgery. I suspect I will. Can I live the rest of my life without being able to lift things? (Of course, I don't know how long that will be.)
How did your bowel blockage come about? -- They are saying this hernia is not cancer, but age and weak muscles, but my oncologist hasn't chimed in yet. Why were you in the hospital 28 days? Complications of that surgery? Osteotomy?
My mother had surgery for an umbilical hernia about 65-70 years ago. She never had any complications from it and then around 25-30 yearss later developed lung cancer (from years of smoking) and died from the csncer 5 or six months later. We have such better care now! My bowel blockage was found after I had extreme projectile vomiting one night trying to take my before bed pills. We went to the ER right away and a CT showed "extensive" cancer cells loose in my belly. (I have lobular bc and it goes placees like that). I was sent to the much larger hospital 50 + miles away the next afternoon when a bed beecame available. Parade of various specialists in and out of my room--a teaching hospital with lots of residents, interns and students. The surgical procedure, an osteojejuneostomy, was done on about the third day and the best of the time was healing from that. I could only eat a little bit at a time, reason for all the weight loss. It was the hardest month of my life! And the gastrologist who treated me therewas a condescending ass hole! The palliative care doctor was delightful with a great sense of humor. The other symptoms and sideeffects I've had are minor compared to that! Does help keep things in perspective.
Thanks, reassuring in a weird way. I have an umbilical hernia from a high dose of prednisone (30-60 mg) for two years for an auto-immune disease. They refuse to do anything about it. I have a tiny friend who got a belly button hernia from pregnancy. She tried to get it fixed, but they said it is cosmetic. (Sure is uncosmetic.)
The hernia that is troubling me is inguinal, very different from umbilical. I don't have lobular -- unless ER+ can mutate into lobular -- so I try not to imagine it is cancer. I am having some symptoms of maybe liver, but I have fatty liver disease and typically low bilirubin. So probably that. I generally stay positive, until one of these things gets me that affect my life or scare me. The hernia either stays or I have to have surgery. Trying not to make it bigger, but that typically happens.
That’s a tough question. When I found out I had MBC, I worked for 3 months. I was 69, and now 71. We sold our house in OKC and moved to a small town about 90 miles closer to my son and grandson. Three months later he was scouted by a company in Ohio for twice his pay, how could i interfere? And off he went with my grandson, he was 9. Our new house half the size of our old house we lived in since 1984, is 65 years old. I’ve always wanted to redo an old house. We bought all the materials and paid someone to do the work. Two years later we have traveled and if we had waited til now to make the move I couldn’t do it or clean that big house. Sure I miss my son and grandson, but we made the right choice. I miss my job, I was HR, for a hotel management company and when I retired I still receive the best benefit from them. My pain is bad now and can’t travel anymore and am grateful we traveled while I could. We have planned to go to Seattle this fall and drive to Maine. We figure we will be gone a month, only time will tell. Yours is a tough decision! I wish you the best! Hugs!
Don't let it define your life! Mine did for a while as we were in lockdown. But I met a new partner during that time and now we have bought a new house together in Scotland.If you feel' normal ' just live normally as long as you can. I'm convinced that's what keeps you going. I'm 74.
Beautiful Thriver
Except the Cancer ...Took me 4 months ..in my mind..
Now I work back at 8 hour shifts....Stopped thinking negative.. once in awhile it passes through..
I do not tell anyone I have BC...the response received when I did was the look of a sad puppy and the shoulder hug s then distance...some ghost me...
Now 5 years later same people saying ..Your looking Great...lol then the sad face How are you?...
Been a few years In my mind not long enough...
Me...Oh look its late I have run meeting someone.
Then the magic words I will call you for coffee...we can talk then
Stay Happy..Eat Good...Excersise...work
I am single... Men I have met ..OHH you have Cancer...no second date
I was diagnosed with MBC de novo 3 years ago. Shortly after the diagnosis, majority of employees including myself, were let go. I had to look for another job which I landed soon after. Fortunately for me it was during COVID, so all interviews were on zoom. Otherwise, I’d not be able to go through it.
I’m working at this large corporation for 3 years. The work is intense, but I’m working from home full time. This is because a year after a diagnosis I had a surgery to alleviate spinal cord compression that left me wheelchair bound.
I didn’t tell my boss or any of my colleagues that I have MBC, but he likely could guess being a physician
Does the cancer run my life? Yes, I lost my life, I lost my independence, I need help with every basic need. My social life is non-existing, but I’m lucky to have supporting husband.
I just turned 61, and I’ll continue working for as long as I can. I need my health insurance and I make good money, good part of it going to pay a private caregiver.
I also am 66, but in my head I am 27. I own my own internet company; been doing this for 27 years. I am not thinking about retiring and neither is my husband, who is the same age and who owns his own company.
During the pandemic, I closed our NYC office and we all went virtual -- and love it! My son jokes that this was my idea of retirement, skipping the commute from NJ-NYC, which was stressful and unpredictable! We actually are doing more, not less. I interview authors, host monthly events and more!
I am flexible about getting to dr appts (a Sloan Kettering facility is 8 mins from my house and thus monthly appts for fulvestrant shots is easy, as are other appts.
I was treated for melanoma in 2010 (one spot and nothing else even to monitor), breast cancer in 2012 (one spot; did breast reduction at the same time then radiation), MBC with one spot on my hip in 2019 (then Ibrance, fulvestrant, Xgeva...still on those and 3 targeted rads to hip) and with that noticed thyroid cancer on a scan and took care of that with surgery in Nov 2021.
For humor on the latter. We recorded a number of videos in advance of my thyroid surgery in case my voice was raspy later. Meanwhile nothing happened and I made some calls from the hospital and NO ONE knew what was going on.
I have dropped foot on my left hand side, which may or may not be from radiation or a shot. I have done PT for it...and it is what it is...and I roll on.
A few close friends and my team at the office are aware of things with me healthwise and for the moment it's all good. I know this can change at any time. BUT I am at an age where most people have SOMETHING...and it may be just as tough as MBC.
We love where we live (house, pool, great neighborhood); one son is 33 and he still lives here, but travels a LOT right now on a 6 week trip- he defines digital nomad. He works at my company, but has no desire to take over. My younger son is 28 and he lives about 20 mins away with his girlfriend. We are not planning to downsize. My husband does joke that we have a lot of stuff and he said he plans to die first so I can deal with it!!
My dad is 93 and relies on me for immediate care as my sister is out of state. Another reason I am pretty locked to stay the way I am now.
We would like to spend a couple of months a years in someplace like Colorado. But as long as my dad is alive, not happening. I do all holidays and family celebs.
Yes, things will change at some point, but I am not at that point.
Also, I am a huge fan of private insurance even though I am over 65. I loathe that I would have to pay for Ibrance out of pocket, etc. Maybe I am crazy, but I HATE the govt telling me what I can and cannot do.
Longer than I planned...thanks for having me think about this!
I’ve had MBC since Oct 2017. I am on Ibrance, Letrozole and quarterly Zometa infusions. My BC came back in my spine, hip and back. I work full time as a HS teacher. My principal knows my condition and has been very understanding. I’ve done well on treatment, although I do have some occasions I have not felt my best. I’ve also had COVID twice, to which I missed 5 days of school each time. No doubt I contracted COVID from my little darlings at school! I work for me - this is year 32 and I honestly think working has allowed me to do so well. It gets me out of the house and creates a sense of normalcy. I may crash on the weekends but I enjoy what I do. I suggest you do what is best for you. Good luck and God bless!
I'm 37 and single (MBC for over 2 years, currently triple positive) and definitely have to work. I'm well enough to be able to do my desk job still and hopefully can for a long time. But I'd love to not have to work. My attitude on career and work in general has changed so much. But it would be very hard for me to get by just on disability though. It wouldn't pay enough for me to continue to live on my own. Being a young and single person, I'd barely started to think about future retirement planning when this happened as I was still hopeful for my dreams of partner and children someday. But those are the cards we are dealt and I try to make the best of it.
Hi purplelikep, thanks for your post. It sounds as though you are questioning some of life’s changes post MBC diagnosis. Even though there is a 29 year difference in our ages there is an opportunity for us to learn from one another and support one another. I have been living with breast cancer for 23 years. My first diagnosis was when I was 43. Then again at 60 and now 66. Granted the first two were not MBC and I looked on life as a “right” not a “gift or a blessing” - that has changed since my MBC diagnosis I feel blessed to be here right now. And I mean literally “now”. You have been living with MBC longer than I have and it is good to hear you are still working and tolerating your treatment well enough to do so. That’s my plan I have to work too…What are some thing’s you have done in the past two years that have helped you along the way? That motivate you to rise every morning and head out the door to work? I love to hear what inspires us all to keep shuffling those cards we were dealt! To live it up as I like to say!
What a strong and positive person you are. I admire you.I was able to retire early when I had my diagnosis. I'm not rich (in money terms) but live comfortably.
I have always said to family/ friends, I feel for those who have to go through the cancer journey (or any journey which involves sserious illness) and still have to work.
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I grew up in the Bay Area
Changing US Health Insurance with MBC
Very low ER positive MBC
New Member - De Novo MBC
Wheee! MBC! What a ride!
