MBC and Your Job -- whats your story?

moderators
moderators Posts: 8,689

We're looking for submissions about your experiences with a metastatic breast cancer diagnosis and managing your career. Did you find great support in the workplace from your employer and colleagues? Did you feel comfortable disclosing your diagnosis? Were there any unexpected reactions? How did you handle any adverse/complicated experiences? Did you need to shift your job/career goals?

Please add your responses here and we'll reach out if we need further information!

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Comments

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited November 2018

    Hi Mods! What a great topic!

    When I was diagnosed, I did not stop working. I have a private medical practice and it was still in the early stages of being built up (I am still there, I think that the first 5 years are the early stages of building a practice and I am in year 3 now!).

    I did share with my colleagues (fellow medical providers or holistic health care providers) what was happening and about my diagnosis. Everyone was as surprised as I was. I felt very cared for and loved. I did not share the news with any of my patients because I wanted to be able to have one place in my life that I could melt away out of my head and into my work and NOT think about cancer constantly. This was a great move on my part.

    Initially, I was working 6 days a week but after some discussion with my therapist and family, I decided to cut down my hours to being available to see patients only three days a week. I have to admit, this felt scary from a financial perspective, especially since I was/am still in the early stages of building my practice. However, I made the right choice and my practice is flourishing, as am I.

    I am so grateful to have the extra time off of work so I can focus on myself and my self care. On my days off I exercise, cook, nap, read, walk, meditate, dance, spend time with family and friends. Sometimes I simply stare at the wall for a while. It is just time for me to rest and heal. While I struggle with an internal voice that tells me I should be working more hours, I am so glad I have this time to care for myself!

  • candy-678
    candy-678 Member Posts: 4,176
    edited November 2018

    I don't think I have had a good response from my employer.  I  had to give up my career--as a staff nurse in a hospital setting--for a "desk" job.  When I was first diagnosed, and I spoke with the HR department of my employer, they were not very helpful.  They suggested I look at the job openings in our organization and find something I felt I could do.  Then I applied and interviewed like any other candidate and finally was offered the job.  Keep in mind, I have been employed by this company for 25 years.  And my salary has been dropped by half- literally. 

    My new co-workers have not made me feel welcome and have actually made fun of my appearance and need for accommodations.  My new supervisor has made not-so-nice comments about my intermittent FMLA status.   

    I just try to stay under the radar to keep my job so I can continue to have health insurance.  I have been looking into Plan B for when I can no longer work.  The Health Care System in the US is pathetic.  Private Health Insurance cost is astronomical.  Managed Care ( aka Obamacare ) you have to go to certain docs not of your choosing.  Medicaid looks at your assets and you do not qualify unless you are destitute.  

    MBC has definitely changed my life. 

  • moderators
    moderators Posts: 8,689
    edited November 2018

    Thank you for your inputs. candy, we are really sorry to hear about the professional changes you needed to make, and most especially about how people have treated you. We are sending you hugs Medicating . People express their anxieties around "cancer" in very awful ways at times.

  • illimae
    illimae Member Posts: 5,740
    edited November 2018

    I work for the State of Texas and shared my diagnosis with my supervisors and my team. I was only 41, so everyone was blindsided but very supportive. I worked except for the day of chemo and while recovering from surgery but gave my supervisors notice that I planned to medically retire in about a year. So, a year passed and they were not prepared for me to leave. I stayed on and reduced my schedule to part time when brain mets were discovered but continued for another 6 months until replacements could be hired. I’m now out on sick leave with plans to retire once my sick leave hours have been used, state agency insurance is good and I have short and long term disability plans. Unfortunately, my medical retirement comes with a penalty for withdrawal under the age of 50, so I’ll walk away with just enough to cover the medical deductible for my husbands portion. It’s nice to have more time to take care of myself but adjusting has been difficult as I do enjoy a busy office.

  • pajim
    pajim Member Posts: 930
    edited November 2018

    I work for a medical society. Have done since before I was originally diagnosed with cancer. Its a desk job and I'm considered senior management. I love my job, I love going to work, and they love me. [Thank heavens] My bosses are physicians. Some of them know I have MBC, some of them don't. A few co-workers know, most don't.

    I didn't actually tell anyone except for my direct boss and two of my co-workers. It's just that some of the rest know every well that 40-year-old breast cancer survivors don't just break their back. In the old days of the back surgery if someone asked if I fell I just told them no, it was bad luck.

    The ethos where I work is "we'll support you to the end". And I've seen them do it for two others. They will do it for me. In exchange I'm as honest with my direct boss and the head of HR as possible. For instance I told them both last year that I was on the last treatment before iv chemo and I expect that iv chemo will interfere in my ability to do my job. Their response was "what do you need"?

    I realize I am luckier than I can imagine.

    But sooner or later I will need to cut back. And it's going to hurt. But it must be done. That time is coming sooner now. So I've been teaching a new person how to do parts of my job and I've been documenting things. When the time comes I want them to remember me as organized, not 'left them with a mess'. I'm hoping to concoct a 3-day-a-week position but that's subject to negotiation.

    The real fly in the ointment is insurance. We have the world's best medical insurance. [Remember the point above about luckier than s---?] And it's not clear what happens when I must take long-term disability. I've read all the company's documents and the question is specifically not answered. I'm uncharacteristically afraid to ask. I would encourage anyone who is working to find out about disability and insurance.

    One other point I'd like to make. Recently my wider career has started to take off. Invitations to give talks, be part of industry initiatives, etc. I'm so sad about that. It really hurts to think that I won't be alive to see it to the end. But I still say yes to almost everything. If I have to wear a wig or a cap or whatever, they'll just have to get over it.

    I'm glad there are people like me who work, and I totally understand the women who take immediate disability or retirement to be with their family. Everyone's decision is right.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,309
    edited August 2019

    I have been living with MBC for a bit more than seven years. Save for 3 1/2 months after a bmand an unforeseen complication, I have worked full time. Let me start by saying that I consider my job, teaching first grade, a calling and am passionately committed to the field of education. So on that count alone, I couldn't wait to get back to work. When I came back, I didn't announce my stage IV dx, but I did make it clear that if anyone had questions or concerns that I wanted them to speak with me directly. This pretty much shut down the rumor/gossip mill. I feel like I set the tone and others followed my lead. Over time, I told a few people that I was stage IV and over the years it became common knowledge. At the same time, many families in my school community don't know since it's been so many years and is no longer a current event. Something good that came out of this is that a few members of my school community, having been dx'ed with bc have come to me for comfort and questions

    As to my employer, they are the local school district and the state of CA. I belong to one of the largest unions in the state. Sick leave, disability and workplace accommodations are clearly spelled out in our contract so we know going in to it what to expect.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited November 2018

    Like Pajim, I am incredibly fortunate. I have been very up front with my diagnosis from day one as I just feel it's the easiest path for me. When I was first diagnosed as stage IV my MO had me on Taxol to try to get the pleural mets under control. As expected, I lost my hair and refused to hide this fact, choosing to wear scarves and hats rather than a wig. My colleagues have all been very supportive with some checking in on a regular basis to see how things are going. (I did laugh at one particularly dense individual - I work in a large office building - He asked what my secret to hair growth was! I responded that I didn't know about the secret to growing hair but definitely had the secret to losing it - Chemo! Couldn't help myself.... ).

    Given the nature of my employer, I have excellent medical benefits including a very good LTD plan. However, while I occasionally would prefer to stay home at times, I know that working is the best thing for me so I have taken very little time off. I took a couple of weeks off when I was first diagnosed but very quickly felt like I was going to lose my mind if I spent another day at home. I actually wrote to my boss from my hospital bed to discuss return to work after having the PleurX catheter put in! I was forced to do a gradual return to work despite my protestations but have been full time again since May of last year.

    There have certainly been times over the last two years that I have considered scaling back. I worry at times that I am not giving myself enough "me" time, realizing how quickly things can turn for any one of us. The combination of early progression on Arimidex, symptoms from bone and belly mets, a lung infection and then a bout of pneumonia really made me wonder how long I could keep working full time. Fortunately Faslodex seems to have things under control, I'm feeling well again and enjoying the income from working full time (doing renovations on my house) so my head is back in a good space. I know my MO is of the opinion that I should keep working as long as I can.

    Having said all this, I can't say that MBC has not had an impact on my job and career. I work in a highly competitive industry and prior to my diagnosis I was very focused on career progression. That's gone out of the window now. While part of me wants very much to take on new roles and challenges, I find I am not up to the long hours any more and no longer want to focus so heavily on my job. I also struggle with the idea of changing positions within my organization as I would not feel right interviewing for a position knowing that they will be taking on the burden of my health issues. It's tough with the uncertainty of never knowing when things will start to go downhill.

    But to end on a positive note, I am lucky to work in such a great organization (despite the stress that can come with my senior management role). My work unit has been very supportive, even reallocating resources to hire a junior manager to support me. That alone has made a huge difference as I feel there is backup and continuity if I am not able to work for whatever reason. So far it hasn't been an issue but I feel that my organization is prepared. Great to have that piece of mind.

  • Lumpie
    Lumpie Member Posts: 1,553
    edited November 2018

    I work for a large healthcare organization. Unfortunately, they have not been particularly supportive. On the plus side, they have scheduled me around my appointments for care. I never took leave – just two or three days around the time of my two surgeries and occasional days for doctors appointments, scans and infusions. I had two surgeries adjacent to weekends so that I could minimize time off. I was reclassified as part time, even though I was working full time. This reduced my access to benefits although I was able to keep health insurance which has been critical. My boss and co-workers knew about my initial round of treatment. They were generally supportive, but sometimes seemed frustrated that I was slightly tired and may not have felt 100%. It was made very clear that this was unacceptable. I was excluded from pay rate increases awarded to other staff. I was told explicitly that it was because I was less valuable since I was treated for cancer and did not deserve the increase awarded to all other staff members. When I needed more treatment, I was told that my department had done enough for me and that I had 30 days to find a new job. Fortunately, I did – but the new department would only employ me part time. I think that this was an effort to push me below the threshold for FMLA. At the same time, they stated explicitly that they had a staff shortage and wanted staff to work more hours. I was required to work in a position that was "below my license" with a corresponding pay decrease. Later I was told that they would not be able to place me in an open position for which I was licensed. I was moved to another department where I was given a heavy load of high acuity patients, which I handled competently, and yet have been told that "it isn't working out." After the first department, I have not shared details of my diagnosis with co-workers. I don't have hair and wear a wig – and some of my co-workers know that I have a history of cancer. My co-workers have generally been very supportive, both about my cancer and about working with me. It seems to be management that has not been. Clearly, they just want me to leave – probably without accessing the benefits to which I am entitled. I assume that this mostly relates to the added cost of providing care to someone with a cancer that is expensive to treat. It is really disappointing that after close to a decade of loyal service with excellent performance reviews, this is the way anyone with cancer might be treated. I think I will need to take leave but I am actually responding well to treatment and my doctor has said that she may not complete the paperwork necessary for me to be able to take leave because she doesn't think that I am disabled enough. If she won't, I am really in a pickle. None of us should have to fight these battles. I need to be able to focus on being well and doing my job.

    PS: If anyone has taken SSDI and returned to work under the "return to work" provisions, I would love to hear about your experiences. Thx.

  • AllyBee
    AllyBee Member Posts: 99
    edited November 2018

    I'm sorry your workplace has been so horrible Lumpie. That's absolutely disgusting that they would treat you like that, especially in the medical field.

  • candy-678
    candy-678 Member Posts: 4,176
    edited November 2018

    Lumpie-

    I feel your pain.  See my post from Nov 16.  I too work in the healthcare field.  Seems like the field where health is the purpose of the industry we are the least understood. I have heard the phrase "nurses eat their own" and it seems to be true.  And money is the goal of the organization, not compassion. 

  • Karz72
    Karz72 Member Posts: 102
    edited November 2018

    I’m coming up for my 4 year anniversary of my stage 4 de novo diagnosis in December. I had just accepted a post (a promotion) in a different department when I was diagnosed and started in January immediately working 2 weeks on 1 week off as I found the AC chemo very difficult.

    I told my new boss as soon as I was diagnosed and he has been nothing but supportive ever since. We get a decent amount of sick leave and I had lots saved up. It’s only now that I’m having to watch how much I take. Luckily my job can be done remotely and with my supportive manager I can work from home the weeks that I feel I really need to nap during the day.

    I told my manager and the rest of the management team when first diagnosed. I told colleagues and subordinates if they asked, but most didn’t even notice the change to wig, and complimented me on my hair cut when I “went short” post wig. My daughter insisted I wear a wig at school and around her friends so I wore mine all the time. I had two years of remisssion and hormonal treatment then started chemo this year. This time I announced it at my weekly meeting with all staff, and everyone has been very supportive. I haven’t needed too much sick leave and haven’t lost my hair, so most colleagues haven’t really noticed a difference.

    I have good disability benefits through work as well as personal policies and am considering medical boarding end March (end of our financial year) I’m tired and have lost my enthusiasm for work, as much as I love my job and the people I work with, saving my energy for my daughter is my priority.

    When I was first diagnosed, being able to work was so important for my positivity. I saw leaving work as an admission of giving up and the beginning of the end. And my workplace has been fantastic in providing that challenge and distraction for me. Now I’ve realised I can still believe in many more years, but I don’t have to be superwoman any more. I know it will be a sad farewell but I will be well looked after

  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited November 2018

    I was in my early 50s when diagnosed with mbc. I had a low-paying part-time job, not a career, as a teacher's aide at the local elementary school in the small town (pop. 5,000) where I live. Those at work knew I was diagnosed with bc, but I only revealed the metastatic part to family members.

    My employer and co-workers were understanding and accomodating to my situation. I took paid sick days when needed for treatment and scheduled my surgery during the summer days off.

    I ended up working four more years after diagnosis and initially, it helped me have something other than mbc to focus on. I knew I made a difference in children's lives. But my contributions were mostly invisible to the administration and due to staffing cuts, my job duties changed often and were increased.

    Re-assessing the job each year, I finally decided it was no longer the best use of my time and limited energy. I went on disability. My husband has a very good job and benefits, so my disability check is basically a small monthly supplement to his income.

    Leaving the job gave me more time to survey where our finances stood which led to numerous adjustments, fine tuning our spending and increasing our savings. Because of that, we are in even better shape now for husband to retire in several years. I also spent time decluttering our house room by room, quite a relief, and I'm more available to help members of my extended family when they need a favor. Dh and I have time to address home repairs and to take day trips and spend leisure time with each other and family and friends. It's been four years since I quit work and I feel I'm making the best use of my time on more meaningful activities.



  • finallyoverit
    finallyoverit Member Posts: 134
    edited November 2018

    Interesting stories, ladies. Mine is very different from those posted already. No one, other than my direct manager, knows of my diagnosis and honestly, I think he has forgotten. None of my coworkers know or suspect a thing. I currently work most days from home so I can go to appointments and such without anyone being the wiser. I’d say I’m very lucky in that aspect.

    Where I’m not lucky is that I have no choice, I have to work. I am single and there is no way I could pay living expenses (let alone private health insurance premiums until Medicare kicks in) with a disability check. For now, it works because I have no symptoms but I know that won’t always be the case. I have no idea what I’ll do then, but I’ll cross that bridge when I get to it. It will likely be similar to the first time I went through chemo, I continued to work every single day. I did not take a single hour of leave related to chemo. The only time I took off was a week after my lumpectomy. That was considered my vacation that year.

  • JFL
    JFL Member Posts: 1,373
    edited November 2018

    My employer would be very supportive from an emotional and time off standpoint but sharing the full nature of my stage 4 diagnosis would essentially bring my career to a screeching halt. I don't share my diagnosis because I do not want to be written off professionally or personally, taken off of a career path and treated with kid gloves like someone who is dying and beyond all hope. Thus, I remain in the closet about my diagnosis for the most part. My colleagues do not know I have been in active treatment for the last 4 years. They have noticed I have lost weight (which they assume is from dieting, most likely) and my hair changed but people generally don't notice I wear a wig. What I sacrifice in physical exhaustion, I gain in mental happiness and contentment. At work, I get to spend many moments, minutes, hours throughout the day being treated like a normal person and forgetting I have mets. I get to do something positive to further my life goals that I worked so hard and sacrificed for so many years to achieve. Also, I sit at a desk all day which is easy on my body so I don't spend the day feeling physically limited like I do at home, trying to run after my toddler which is very hard. If I quit my job now, I would likely spiral in a depression and not fare well. There may come a day when that changes by choice or by necessity but for now, I continue with my career which brings me satisfaction and a sense of accomplishment. I have been promoted several times and received amazing opportunities for new challenges and leadership/professional opportunities since my mets dx. I have a professional, senior position and do have flexibility to go to my appointments, etc. Also, I do not work as late as I used to and do consciously assess my time spent on work versus with my family so that I have enough left after work to give the best of myself to my son. On the other hand, I am expected to handle issues as they arise at work which may entail occasional work on evenings/weekends/from home when needed. My son is proud of me and my career. Because I don't know how long I have on this earth, it is tough to throw in the towel just yet. If I knew I had a few months, things would be different. However, if I am going to be kicking around a few more years or more, I would like to continue working which is such a large part of my identity. Also, my family could afford to go without my salary (although going without the insurance my job provides would be a hardship) from a pure needs standpoint but we would have to drastically change our lifestyle which would feel like a major loss in and of itself because it would not be by choice but feel forced upon me by the cancer. I worked hard for so many years grinding it out to provide my son with things that I did not have and to have the opportunity to do things my parents did not have the opportunity to do and also to give my parents some of those opportunities now. I am a bit stubborn and refuse to let anyone, including cancer, tell me what I have to do. The decision is mine and not the decision of my doctors or my cancer or anyone else, regardless of what people "normally" do in these circumstances.

  • Lumpie
    Lumpie Member Posts: 1,553
    edited November 2018

    AllyBee & candy-678, Thanks so much for your sympathetic comments.

    I thought I would share a couple of other thoughts and comments that may resonate with others and/or provide "food for thought." Given my recent experience at work, I have done some research on the cost of my care. I knew it was expensive. I am extremely fortunate to have good health insurance coverage, otherwise, like most of us, I would be bankrupt in no time. The cost of my care is in the neighborhood of $500K per year. I have confirmed with insurance that this cost is passed to my employer. For those who are not aware, if you get insurance through your employer, most employers do not pay an insurance premium per person, they pay the actual cost of your care. Some employers, especially those which are smaller, have what is called re-insurance. This is a type of "stop loss" commercial insurance which kicks in to cover the employer's extraordinary health care cost once they hit a certain level, for example, $1 million per year for the organization. If you (or your spouse who provides your coverage) have always been an excellent employee and suddenly find yourself not well received at work, you may want to keep this in factor in the back of your mind. If it costs $500K per year to employ you, your employer may decide that that is not a good deal.

    I had a frank discussion with my doctor about these concerns and the fact that I have had to give consideration to going out on medical leave/disability even though I would rather not. She said she would complete the paperwork but that she has seen more and more cases of both disability and even FMLA claims being denied when patients are doing well. Fortunately, I am doing well at present. My MBC is stable. I have side effects from treatment but...I mostly seem to be managing well. I don't know what would happen if I sought FMLA or disability today but if my employer deems me too sick (expensive) to work yet disability deems me too well to receive benefits, i am stuck between a proverbial rock and a hard place. I cringe thinking about asking a new employer for a job knowing the cost of my care. It goes without saying that this wouldn't be an issue if my employer were not saddled with my extraordinary healthcare costs.

    PS: I am single and do not have other sources of insurance or income so, if I do not have income from work, PTO or disability, I would not have income at all. Insurance would have to come from COBRA or ACA. I should qualify for SSDI, in theory.

    If others have successfully navigated similar experiences, I would love to hear about it. Thanks.

  • JFL
    JFL Member Posts: 1,373
    edited November 2018

    Lumpie, I went back and read your original post. Your experience sounds awful. I feel for you. Employers cannot discriminate and make employment decisions based on someone's cancer status (although in reality it happens). It is a protected class and considered a "disability" under the federal Americans with Disabilities Act (ADA). In addition, your state may have similar laws that afford you similar protections. You have a right to request a "reasonable accommodation" at work for your "disability" so long as you can continue to carry out the essential functions of your position. Adjusting your work schedule to permit you to go to treatment and complete work at alternative times/locations is considered a reasonable accommodation. They cannot terminate you (either actually or constructively by pushing or squeezing you out, for example) or refuse to give you equivalent benefits and privileges of employment to which you would otherwise be entitled based on your cancer status or the cost of your treatment. Below is more information on your rights as an employee as well as a free service recommended by the US Department of Labor that can assist with technical answers to questions you have about your rights.

    EEOC Employment Rights as an Individual with a Disability: https://www.eeoc.gov/facts/ada18.html

    Job Accommodation Network: https://askjan.org/info-by-role.cfm#for-individuals

  • HLB
    HLB Member Posts: 740
    edited November 2018

    I have been very fortunate at work since my Mets dx in 2012 and also the first dx in 2004. I told pretty much everyone who would listen and I think that works best for me because no one feels uncomfortable about it. I still work FT. I would rather not but like many others, I am single and that is how I get paid and health insurance. If I quit I figure it would be a job to fill out paperwork constantly asking for grants for treatment which would be very anxiety provoking. I have intermittent FMLA, which allows me to use sick time for treatments/appointments, or occasional not feeling well. That way I don't have to use my vacation time, although if the sick time runs out I will eventually have to use it. I work as a medical Coder at a teaching hospital. I've always really liked it, but a lot has changed with EHR and more recently a new system that has really slowed us down and cut productivity in more than half, so every day is an emergency and everything is priority and "why are the numbers down!?" So that is very frustrating when we used to be able to get everything done every day. My boss is super understanding about everything that has to do with my condition but I feel guilty sometimes due to always being behind and my time off making it even worse. I don't want things to get to where it's a disadvantage to keep me. I've always felt that I earned my keep so to speak by doing a good job. This past Monday I have moved from pills to IV chemo so that is one day a week. We will see how it goes.

  • candy-678
    candy-678 Member Posts: 4,176
    edited November 2018

    Lumpie I read your last post and wow 500K/ year.  But I cannot feel too guilty for my employer.  I am employed with a corporation, not a small business, and in my opinion they can afford that sum.  And if the employee is a long term employee with a good record as an employee (me) then I really don't feel bad for the organization. 

    I applied for intermittent FMLA and was accepted and I am not on IV meds, but pills.  And I am 'stable' for now.

    Disability is another story.  I have been told so many different things on this issue.  At one point, I was told that with the MBC diagnosis we would automatically be accepted.  If that is true, then how can they deny us on the basis of 'stable' for now.  With MBC 'stable' is fluid, we can progress at any time and have to change treatments. I would think if we have the MBC diagnosis we could get disability now or at anytime in the future.       Of course, this is all hearsay.  I have not started the process of claiming disability.  When I do, I may learn otherwise.  

    I too am single with no other source of income or health insurance. 

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited November 2018

    This is a good and interesting discussion. I am also single and because I own my own business, if I don't work, then no money! I am receiving a type of health insurance that is through Medicaid but for people with breast cancer who make under I think it is $45K or $40K - I cannot remember, but the social worker at the hospital where I am treated helped me to apply and get onto this insurance plan and it is working so far, I have not paid any medical bills since I switched over to Keystone First.

    I was in grad school for about 5.5 years and then started my own business right after I graduated. When I was first diagnosed, I looked into going onto disability and found out that because I have not worked full time for the past 7ish years, that I do not have enough money in my social security to pay for disability??? It is too confusing. If I need to, hopefully not anytime soon, go into full retirement, I will re-investigate this possibly with a lawyer or some type of support network that helps people with disability issues. At the time when I applied, I was newly diagnosed and the stress of it all was too much for me to take on, so I dropped it and just kept working.

    I am glad I have my practice and that people pay me to help them feel better. I am incredibly lucky! I often think that my patients would probably be quite surprised to learn that their practitioner has stage 4 MBC!

  • Lumpie
    Lumpie Member Posts: 1,553
    edited December 2018

    Thanks, JFL! Rights are great. It's enforcement that's the problem. It's exhausting to be in an environment that is ... not supportive. I just have no interest in having to walk into a hyper-confrontational atmosphere every day. That is very stressful and not good for my health.

    HLB, I hope the new treatment goes well. Very glad to hear that your workplace and boss have been supportive. That's the irony: with just a bit of accommodation, most of us can remain valuable employees. That's the way it is supposed to work!

    candy 678: part of the issue with disability is that there are two (or more) different kinds: those with MBC are supposed to "automatically" qualify for social security disability (after the required waiting period) under the compassionate allowance provisions for stage IV cancer (link below). For private disability policies, which we may have through our employer, the standards can be entirely different. Those policies tend to look more at functional status. So the "you don't look sick to me" thing can be an issue even if you have a serious diagnosis. Even for FMLA, there is some ambiguity about access to leave. If your functional status is high, your employer may decide that you are not entitled to leave or that if you are permitted to use it, that you are not entitled to any vacation time (if that is legal under your state law - it is where I live) ...which is quite demoralizing.

    https://www.ssa.gov/compassionateallowances/condit...

    I think many of us struggle with the work thing. We'd like to keep working but... even if we love our work... we'd like to take some time off, too... and maybe not just for medical care... because at some point... long before we reach retirement age... we are going to be too sick to do anything... and no part of that seems fair. Plus, we may need some time off to get our affairs in order, care for other family members, etc.

    LoveFromPhilly: if you have been paying into Social Security for several years as a self employed person, I think that there is a good chance that you will qualify for social security disability when you need it. I hope so! You need between 20 and 40 "credits," depending on your age, to qualify for Social Security disability. I am placing a link to more info on credits below. I am glad that you remain well enough to do your very important work!

    https://www.ssa.gov/planners/credits.html


  • HLB
    HLB Member Posts: 740
    edited December 2018

    Thanks lumpie, you're right, even with FMLA if we earned the time we should be able to take it. I certainly don't consider treatment and appointments "vacation" . The way mine works is the FMLA allows me to use "sick" time, which can only be used when you have something like surgery or maternity. If that is used up you have to use regular vacation time. If you don't have that you can be off without pay and FMLA means they have to keep your job open for you for a certain amount of time. Also, you can sign up for pto donation where others can donate some of their extra time to you. It's very good compared to a lot of places. How you are treated does depend partly on your particular manager. I've always had great ones, thank goodness, because I know there are some pretty miserable ones. Like they say, crap rolls downhill. Esp in a very large pLace. 

  • candy-678
    candy-678 Member Posts: 4,176
    edited December 2018

    I think of FMLA as job protection for my situation.  In my workplace employees can only have 6 absences in a year- absence 7 is grounds for firing by violating the attendance policy. After absence 4 there is a verbal warning, absence 5 a written warning.       So I wanted intermittent FMLA for times when I am sick due to the cancer, or Dr.appointments I cannot get on my regularly scheduled days off.  If those situations arise, I call in to work and say "FMLA absence" and that day won't count against me with the attendance policy.  I will have to take PTO time to be paid for that day and not be shorted on my paycheck.   The  'PTO bank'  is sick and vacation days combined.    But at least I am not violating the attendance policy and they cannot fire me on that.  This is the way I understand it,  I have not had to take intermittent FMLA yet.  But it is there if I need to.  


  • Lumpie
    Lumpie Member Posts: 1,553
    edited December 2018

    Candy-678: Yes, that is a good way to use FMLA. It does provide job protection in circumstances like the one you described. In case it might ever be helpful, keep in mind that under the American with Disabilities Act (ADA) you might be covered for the time necessary for those doctors appointments, too. Allowing time for those appointments would be a "reasonable accommodation."

  • gonegirl
    gonegirl Member Posts: 1,022
    edited December 2018

    https://www.cancerandcareers.org/ is a great resource of info for anyone dealing with illness and a job. They gave great guidance when I was looking for a new job.

    Legally, you don't have to tell an employer about an illness. I also found out that the IRS will waive penalties for taking money from retirement for reasons of illness. Talk to a tax person.

    I am looking again. The job I took has been very frustrating and I don't want to spend my days that frustrated. Few know of my diagnosis. I know my care costs come from insurance, not out of employer pocket. Some businesses will do self insurance and take the risk. Many do not.

    I did leave my last job and take several months, but became depressed and was lonely. I wanted to find a job that was interesting and gave me human company. This job has not been that.

    I was single when first diagnosed but am married now. Still, old baggage leaves me afraid of being dependent. I was very comforted when I found out I could take money from my 401k with no penalty. Now I am job searching again while employed and am taking my time to find a better fit. One big criteria is work-life balance. I like to work but need to not drive myself into the ground and need time for medical stuff. I know if employers knew my health status, I would not find a job. Before I took this current job, I told prospective boss I needed to take time every three weeks for an appointment to deal with chronic condition. When she indicated no problem with that, I then accepted the position. But no one at this job knows I have mets. Don't want the awkward comments or assumptions.

  • Lumpie
    Lumpie Member Posts: 1,553
    edited December 2018

    Yes, cancerandcareers.org is good.

    SHARE which is connected with Sloan Kettering (NYC) also has some good resources/webinars. Here is a link to their video library: https://www.sharecancersupport.org/video/

    That's interesting re retirement accounts. I had looked up info about retirement plans. The regs say there are no penalties for withdrawals to pay for medical expenses but for other expenses that arise owing to an illness, i did not find an automatic waiver of penalties. (I'm thinking things like covering move expenses due to decreased earnings/income.) There may be a petition process. I am sure a tax adviser could help with that. It's kind of scary thinking of being stuck with a much lower income and uncertainty around ever being able to earn more.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited December 2018

    Lumpie - thank you so much for that resource you posted a little while ago. I will take a look! And thank you for your supportive encouragement! I plan to keep going as long as I can. The income is so helpful and I still have lots of energy. Hoping to not have to slow down any time soon.

    I wonder how I can find out how many credits I have? Do they disappear after a certain amount of time? I’ve worked one job or another since I was 14! I feel like I’ve gotta have something built up from that? Lol

  • shutterbug73
    shutterbug73 Member Posts: 284
    edited December 2018

    I was at my job for just over 6 years when I was diagnosed stage IV de novo, mets to bones. I chose to tell my boss and asked that she tell everyone in my department. I have a very busy job, and I take pride in staying on top of things. I wanted everyone to know why I wasn't at the top of my game. They were wonderful. I had the option of FMLA, but chose just to use my regular time off to get me through the hard days of chemo. My boss allowed me to work from home and encouraged me to take more breaks, but I'm stubborn and looking back I think I pushed myself too much. I wish I would have given myself more time to process what was happening emotionally. Instead I threw myself into work as much as I could. It gave me a sense of normalcy, and was the first place that I would forget about cancer.

    I'm lucky to have been stable for 4 years now, and most people have forgotten about my cancer or figured I'm cured. They are surprised when they hear I'm still in treatment. My co-workers closest to me understand, though, and I'm pretty open about it on Facebook. I find it most difficult when we hire new people. I hate telling people about my cancer, but I also find it awkward when everyone knows except one person. If I work with them directly I usually mention it in person, but if they are part of my larger group, I let them figure it out on their own.

    About a year ago I got a small promotion that came with a decent raise. A few months ago my supervisor took another position and recommended me for the supervisor position. I knew it would be a lot more stress and responsibility, and I turned it down. I'm still getting used to the new supervisor, but think I made the right decision for my health.

    I still get treatment every 3 weeks, and then with doctor's appointments and scans and blood draws and routine tests...cancer can sometimes feel like a full time job in itself. I could never do it if my job didn't have generous time off and allowed me a flexible schedule. That being said, it can at times be stressful, and I've had to learn to manage that stress better. I try to only worry about the things I can control, and do the best I can with what I have. At the end of the day I work to feel a sense if accomplishment, to be around friends, and for the insurance and extra income.

  • gonegirl
    gonegirl Member Posts: 1,022
    edited December 2018

    Shutterbug, that sounds like a wonderful workplace.

    Just to clarify, FMLA is not paid time off, it's legal protection of your job when you know you'll be needing more time off because of your own illness, or having to take off time to help a sick loved one. Sadly, not all jobs are supportive about time off for illness. https://www.cancerandcareers.org/en/at-work/legal-and-financial/cancer-and-the-ada-fmla

  • Selkie36
    Selkie36 Member Posts: 19
    edited December 2018

    I work part time as a teacher. I was working two days last year when I went through chemo, and I told everyone what was going on. My boss only hired me back for one day this year, saying it was because of enrollment, which I could see from the numbers was not true. So then after the mastectomy I was dx'd with lung and lymph mets, and I have not told anyone but hubby and a close friend about the MBC. I do not want to be shoved out because of her fear. She hired a pregnant teacher, who will be out next semester as long as I was last year for chemo. So I know her reactions are about cancer.

    I want very much to teach full time, but I am afraid of what might happen in terms of my health. I value the flexibility to go to appointments. I homeschool my kids. But a job possibility has come up, and I really want to take it if I am offered a position. It would mean shaking up everything, and I wonder if that is a good idea while I have active cancer? At the same time, I feel like while I am in manageable treatment and am young (I am 43), I want to have a career while I can.

  • mlc96
    mlc96 Member Posts: 17
    edited January 2019

    I have a full time job, working in Human Resources at a large company. My first BC diagnosis was in 2012, at that time my employer was very supportive, I worked almost full time during 5 months of chemo, only took off 8 weeks for mastectomy. In 2016 I had a recurrence and became metastatic. At that time I was off 6 weeks to get mets pain and symptoms under control, but then returned to work. In 2018 I had progression and am now on weekly chemo indefinitely. This time I feel like my employer can no longer accommodate me as a full time employee. With my cancer progression I've lost the use of my dominant (right) arm. I can no longer shake candidates hands, had to learn to write with my left hand, which looks worse than a kindergartner's handwriting. I am keyboarding with left hand only and am very slow. Plus the weekly chemo is making me exhausted. I'm barely doing 50% of my former job. I'm accommodated to take time off for appointments, but not really for the half of my job I can no longer do. We had a part time employee who went up to full time to pick up my duties. Now I'm being asked if I want to go to part time status since I can't handle the full time work load. I'm in the boat of not disabled enough to be off and not well enough to work full time. I need the full time benefits, medical, disability, life insurance, contribution to retirement. Also concerned if I lose this job I would not be able to get another one!