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Quitting work in my 40's?

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runmommy
runmommy Member Posts: 3

Hello all, apologies in advance for such a long post,

I was diagnosed stage III back in 2014 at age 34, and had a contralateral axillary recurrence in 2017. That recurrence was considered stage IV since it was on the opposite side as my original cancer (and genetic testing showed that it was almost definitely the same cancer and not new), and so probably traveled through the bloodstream to get to these lymph nodes. I've been told it's a very unusual circumstance, and so there's not much data on long term outcomes. The little literature I can find shows that most people end up progressing further, but since I'm on Herceptin and Perjeta indefinitely, we're hopeful that this will work for me long term. I know I'm lucky to have caught it as early as we did.

Anyway, my reason for posting is that I've been feeling so stressed and overwhelmed by day to day life, and am considering options for how to fix this. I would love to stop working so I can focus on my health, including physical therapy, exercise, etc, and be more present for my family - but I feel guilty because although I'm miserable, I'm still functioning and relatively young.

I have lymphedema (which is managed but still time consuming), but the most bothersome long term effects of prior treatments are a neuropathic itch on my arms and neck (we thought was due to lymph node surgeries, but my MO says could be related to the HP), plus brain fog which is impacting my work. I have trouble finding words (and sometimes say things that I don't mean, such as misidentifying colors which is so strange!) and also just can't focus like I used to. I changed to an "easier" job last year, and my manager and colleagues don't notice any issues, but I still am having trouble working to my standards. I try to compensate as much as possible, and have a prescription for Ritalin to use as needed. Objectively, my 30-year-old self would think that this job and life should be SO easy. But my 42-year-old self feels like I just can't handle it much longer.

Just wondering if anyone has been in a similar situation and has any advice on making this decision. If you decided to stop working, how did you manage financially? Was social security disability an option? I know everyone's situation is different, but many thanks in advance for any thoughts.

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  • Kikomoon
    Kikomoon Member Posts: 358
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    Hi Runmommy,

    I am 41 and feeling very similar to you. I am fully functioning in a less-responsibility job but wondering when it's time to quit. I have a little brain fog, and tasks seem a bit more challengingbut more than that, I just kinda don't care about the work anymore and would rather be doing other things. My understanding is that with Stage IV we are eligible for disability social security but it might take a couple of months. 2 years after you apply for disability you would then be eligible for Medicare. I have long term disability through work but I would apply for social security and they they would pay the difference which is not a whole lot, but it's something. We would have to watch our spending very very closely if/when I pull the trigger. We don't buy “stuff" but we love travel and experiences. Our mortgage is the biggest expense. We have considered selling it and getting an RV but I don't know how serious we are about that.

  • tangandchris
    tangandchris Member Posts: 934
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    I'm in the same situation. I'm 47 and still working full time. Things slowed down considerably for me during the pandemic with work. Things are picking up again and I'm finding it increasingly difficult to deal with work stress.

    I had a particularly hard day today and have just felt out of sorts all evening over it.

    I'm worried about quitting too soon, but at the same time I'm so done.


  • Cutie
    Cutie Member Posts: 10
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    Hello,

    I am sorry to hear the issues that you are having. I experience brain fog after chemotherapy treatment and back to work. I took fish oil and I eventually got back my memory. Also, I took Thorne Neurochondria supplements and some other given by naturopathic doctor and it helped. I just want to share what I did and it helped.

    Cutie


    Cutieimage

  • kris_2000
    kris_2000 Member Posts: 93
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    Hi Runmommy,

    I'm 50 and not working and wonder if I'll ever be up to going back to work physically and mentally. I had to go on short term disability right away because the pain and treatment were just too much. I ended up in the hospital after the first treatment. I fortunately, have long term disability through my employer. I've been paying for it for 20+ years never thinking I'd really need it. If I didn't have that, I'm not sure how I would make it financially.

    Social security disability is definitely an option. Someone I know works for SSA and recommended I apply right away even if I ended up not needing it. When you contact them, mention that you have stage IV cancer. Stage IV knowledge will get you expedited consideration. My process was complete and approved within a couple of months.

  • illimae
    illimae Member Posts: 5,628
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    Runmommy, I was diagnosed at 41 and worked for couple years with MBC but it became increasingly difficult after brain mets, chemo cognitive issues and work related stress, so I medically retired at 43. I was fortunate to have that option as a state employee and I also had paid into a disability coverage plan prior to cancer. I was approved for SSDI after I stopped working and used short term disability to carry me through the 6 month period before SSDI payments kicked in. Between the additional disability and SSDI, I maintain about the same income as before, which has been great. A huge benefit though has been the free time, medical appointments keep my busy enough, so not waking to an alarm clock, having plenty of friends/family time and just relaxing is wonderful. If you can make it work I highly recommend ditching the daily grind.

  • lotusnoiramethyst
    lotusnoiramethyst Member Posts: 19
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    Wanted to know if it is possible to survive on SSDI (and afford cancer treatments) once it gets approved. I am on leave from job for radiation treatments and awaiting STD approval from my employer.


  • illimae
    illimae Member Posts: 5,628
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    Lotus, SSDI is based on previous earnings, so it’s different for everyone but even based on my good pay, living off it alone would be impossible unfortunately. I think one still needs a good supplemental or Medicare advantage plan for what Medicare doesn’t cover and a second household income (spouse/roommate). Living someplace with a low cost of living and having minimal debt are also helpful.

  • kris_2000
    kris_2000 Member Posts: 93
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    LotusNoiAm,

    I agree with illiemae. You can log into the SSA website to get an estimate of your benefit amount. I'm not sure how close the estimate is if you're taking it early though.

  • bmpntherd
    bmpntherd Member Posts: 24
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    SSDI has stage 4 breast cancer as a rapid approval so it only took a few weeks for me. Check with hr- about short term disability (which may be all you need), if you don’t feel like you can return- check for long term disability and apply. DONT QUIT YOUR JOB, quit working. check the wording of your policy- if paid by the insurance company you will not lose coverage when you are medically terminated. Apply for SSDI- there is a 5 month waiting time before payments begin and that 5 months gets added to the 2 year waiting time for medicare.

    If possible, i really recommend a consultation with a benefits attorney. This stuff is complicated and varies from employer and state.

    The major point my benefits attorney stated was NEVER QUIT! Wait for HR to come to you

  • bmpntherd
    bmpntherd Member Posts: 24
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    and always listen to illimae!!

  • illimae
    illimae Member Posts: 5,628
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    bmpntherd, lol!

    I don’t know it all but I’ve been through a lot so far. Lots of good advise here.

  • runmommy
    runmommy Member Posts: 3
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    Thank you for all of the responses!

    My employer has been very supportive, and I was on LTD for 1 day per week for about a year. Then about a year ago, the LTD insurance company decided I no longer qualified, so that stopped being covered and I went back to working full weeks. I'm not sure whether they have different criteria than SSDI. I think having a kind of unusual diagnosis is not something the insurance companies handle well - also, I'm technically "functioning", just not to my prior standard. They said that I should use vacation/sick time to go to treatment and doctor appointments.

    I definitely don't want to take advantage of any program that's intended to support people who are unable to work, but I also feel that I need to look out for my health, and hate the idea of waiting to see if the cancer shows up again in order to feel like I should make any changes. The idea of consulting a benefits attorney is great, and I will definitely do that. Since I really plan to make this change regardless of whether I would qualify for disability, we're also meeting with a financial planner this month. We will see how it goes...

    Thanks again :)

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    Just popping in to say thanks to all of you for sharing. I don't think I'm anywhere near wanting to quit work but it's nice to know there are options if I decide to later!

  • moderators
    moderators Posts: 8,233
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    Just making sure you know that in addition to our Monday meetups, we now have a 2nd Virtual Meetup TODAY (and now every Wednesday) at 4pm, ET for people with MBC

    To register, go HERE.

    After registering, you will receive a confirmation email containing information about joining the meeting.

    Hope to see you there. Medicating

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    What is everybody doing with their retirement accounts, 401k/IRAs/etc? Do you even bother putting money into them anymore? I'm not married and don't have kids so that's not a concern. I'm going to keep working for now but it sure would be nice to stop dumping so much money into those accounts! And I'm thinking about cashing out my smallest account entirely to buy a house. But then I read about the unicorn folks who live 20 years with Stage IV and all the new treatments that are constantly coming out, and wonder if I might end up needing that money later?

  • kris_2000
    kris_2000 Member Posts: 93
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    ParakeetsRule, I've stopped putting money into my retirement account but haven't withdrawn anything. Maybe that's an option for you. That's a tough decision with a lot of factors.

    Are you considering buying a house outright or using some of it for a down payment? It might not be worth it if buying it outright if you don't have a spouse or kids to pass it on to.

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    My idea was to use it as a giant down payment to reduce the monthly payments to something a lot smaller which would be nice, and very helpful later if I do decide to stop working and go on disability. I've never owned my own house and it would be fun to have a place where I can paint the walls purple if I want. :) I think for now stopping putting new money in the accounts is a good compromise!

    From what I've seen so far, if I take money out of the 401k now I pay a 10% penalty which is annoying but not a deal-breaker. If I wait until I go on disability it looks like I can take it out penalty-free. But if I'm going on disability that means my health has probably declined to the point where I can't/don't want to work anymore, and by that point am I really going to want to deal with house hunting and moving and setting up a whole new place to live? Probably not...

    Either way, I'm not going to make any drastic decisions until we see how this first line of treatment goes. Just lots of stuff to ponder! I'm curious to see what other younger folks have done.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,969
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    parakeet,

    I was fortunate to feel very well after my initial tx. Although I was stage IV, I was not disabled in any way and didn’t see any reason not to work as I loved my job. I was 55 at dx and worked for 10 years then retired at 65 as planned. I made no changes to retirement savings but I have a pension from the state and working those ten years after dx helped beef it up. I also had a 403B plan (like a 401 K for public employees) which I continued contributing towards each month. Since I loved my job, working was very instrumental in helping me return to an almost normal life.

    I had no idea, at the time, how my bc situation would unfold though I was fully aware of how grim things were statistically. I decided to carry on until such time as I couldn’t. In the blink of an eye, ten years passed and I turned 65. Between my pension, 403B and other investments that I have, I’m in good financial shape and glad about that but just as I had no idea that I’d have ten progression free years, I have no idea when that will end.

    All of our circumstances, health wise*,financially, career wise, are so individual that there is no one answer. If you feel well enough to work and you like your job, that’s a perfectly acceptable choice even at stage IV but only you can answer that question. Of course, we don’t have crystal balls and I wasn’t counting on being an outlier but here I am. Will I have another 5 or 10 years? Who knows but I am going to live my life as normally as I can until I can’t.

    *Although I was stage IV, I am not sure my mo or any other doctor would have declared me disabled.

  • aprilgirl1
    aprilgirl1 Member Posts: 781
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    Parakeetsrule, I am still putting $ in to an owner only 401k because it reduces my taxable income and I'm still working . However, I think if you qualify for disability (and we should !) you are allowed to take a certain amount out per year of your IRA/ 401ks, once the disability status is official. Talk to an accountant about your idea to take moneyout early with the 10% penalty etc. I sell houses for a living and love the idea of you buying a home - depending on where you live it and how much rents cost, it could be a great plan plus you grow equity and can paint it however you choose !

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,969
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    Just curious… it was often stated that stage IV patients always qualify for SS disability. Is this really true? It’s a moot point for me as I’ve retired as planned but I was not disabled for the 10 years prior to retirement though I was stage IV. As I said previously, I doubt any doctor would have declared me disabled.

  • katyblu
    katyblu Member Posts: 221
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    Runmommy, I am in a unique situation. I am a US active duty military member. I was initially diagnosed at 36 with stage IIIa after I returned from a deployment to the Middle East. I ended up having a BMX and then 8 rounds of chemo. My unit was very understanding and actually gave me convalescent leave for the whole 5 months of treatment. I actually ended up PCSing (moving to a different station) the day after my last chemo. The nice thing was my MO had moved to my new duty station a month before I moved so I got to have the same doctor for the first 2 years of treatment. Once at my new duty station I went back to work and did rads every day for 5 weeks. I had problems with my physical fitness and some chemo brain that frustrated me but for the most part I was still able to perform at a higher level. Cut to this year and I started really feeling the fatigue and some SEs for my potentially rads-induced Graves disease which has been controlled by now making me hypothyroid. Then in August I was diagnosed with MBC. I'm still relatively active, when I feel well I work out at OrangeTheory Fitness 3-4 times a week. I moved to a new job where I don't have a lot of responsibility and I can kind of make it what I want it to be. I'm in and out a lot for medical appointments and lately for bouts of nausea. I'm definitely not performing up to my high standards. But I need to make it to retirement to definitely ensure my full retirement and disability pay. Many of said that I can apply for a medical retirement now and still receive my military retirement pay but I've also heard differently. And I'm not sure what I would do with no job to go to right now. I have a routine and a structure that is really helping me. My work has been really accommodating and has reduced my hours from 6am - 2pm to 8am - 2pm. So I'm really on the fence. There are days I wake up and don't want to get out of bed, let alone go to work and do 'military' things. But I am also so eternally grateful for how they have treated me through both diagnoses. If I do retirement in 2.5 years, between my retirement pay and my 100% VA disability pay, I'll be making almost as much as I am now so that will help with QOL and future wants. It seems to me that it's a multi-faceted decision that's different for every person.

    Sorry if this has been a run on or something, my brain is all over the place today.

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    I appreciate you taking the time to respond exbrnxgrl but a regular retirement was within reach for you. A low chance perhaps, but not unheard of. I'm only 41 so the chances of me even making it to 55 are slim to none. 60 would be a miracle of medicine. 65 would require divine intervention. That's why I asked this question in the "quitting work in my 40s" topic.

    aprilgirl1 Ah, the taxes part is a good point. My other account is a Roth IRA so it's getting money I'm already paying taxes on. I'll probably stop that one and keep up the 401k for now. But I need to do some more research on disability! I know almost nothing about it. I thought that being considered disabled and receiving disability payments went together, and that you couldn't be working. So I hadn't put much effort into research yet since I'm not going to stop working. But can we still be considered disabled with a Stage IV diagnosis regardless of whether we can work? Hm... Even without disability payments, if I can be considered disabled and then withdraw money penalty- free, that would be handy.

    Also, side note, I think you're the only other person I've seen so far with mets in the mediastinal nodes! I'm still trying to figure out what all else they've seen in there but I definitely remember that!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,969
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    parakeet,

    I didn’t resume work with the idea of being able to retire as planned. Ten years ago, pre-Ibrance, Verzenio, etc., there was virtually no chance that I would survive this long. I just decided to keep working as long as I felt well. I seriously did not expect to make it to retirement age. My point is that we have no idea how things will unfold. The approval of the drugs I mentioned has changed the game for many and the possibility of even better drugs is always on the horizon.

    I had no idea, particularly in the pre-Ibrance, etc. days, that ten years was possible, so yes, it was pretty unheard of! Who knows what the next ten years will bring? Take care and good luck with your decision.

  • Kikomoon
    Kikomoon Member Posts: 358
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    Parakeet,

    Don't forget to factor in health care costs. From what I understand, we are not eligible for Medicare until 24 months after getting disability. My workplace insurance costs $80 per month for me right now. But if I go on disability, my current employer-sponsored plan would cost about $700 through Cobra, or I could find something on the marketplace for about $500 - $600 / month. In addition to that, there is an out of pocket maximum in the marketplace that is about $8,000 that I would hit in two months of treatment. I know this because we just put my DH on the marketplace since my company rates went up about $200/month to keep him on. His employer insurance is catastrophic only, which I don't feel comfortable with.

    I stopped contributing to 401k and Roth and redirected it towards savings (and well, some travel). We figure, it we are comfortable in our position in February, I could throw some savings at the retirement accounts before the deadline. I want my retirement accounts to sit and grow a little for my DH's retirement with his new wife (lol, what can I do at this point but make jokes). Whenever he wants to buy something expensive something for himself, I'm like - it's your money, whatever.

    If buying a house is something you always wanted to do you should consider it along with everything else. Don't forget maintenance and project costs for the house! My almost 100-year old house is falling apart :)


  • Kikomoon
    Kikomoon Member Posts: 358
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    Parakeet- also wanted to add that I went on STD for 3 months and had no problems qualifying with MBC, and had I chosen to continue to LTD they acted like it was no problem. I believe that just with the diagnosis, you are qualified for government disability and it is fast tracked. Someone correct me if I’m wrong. All these treatments cause fatigue, chemo-brain, and various other fun stuff that make working harder.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,969
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    Kikomoon,

    I have the same question. I am not disabled though I am stage IV. I can’t imagine my mo stating that I am disabled so would I have qualified?

  • Kikomoon
    Kikomoon Member Posts: 358
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    For SSDI, I believe MBC is covered under the “Compassionate Allowance", (due to the prognosis and 5-year survival stats, which I know, they say are not updated, but that is what they use). All it says is they need a pathology report or surgical notes. Of course, I have not applied yet. Medicare coverage, however, does not kick in until 24 months later, which is total crap that it would take that long for those of us with MBC.

    I sure hope someone chimes in who has actually done it!

    In my experience with private STD, all they needed to know was MBC, no questions asked. They did check in periodically where I said, well- I still have that dang MBC! And they said it's a formality they have to check in because typically it's people who have a broken leg or whatnot. I did feel able to go back to work, but the minute I don't, my MO said that's fine and she will sign off, considering what I've been through, it's to be expected. If I go on LTD, the insurance company will require that I apply for SSDI and they would pay the difference.

  • kbl
    kbl Member Posts: 2,775
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    I applied for SSDI a year after my diagnosis of Stage IV. I was having a lot of trouble continuing to work, so I decided to apply. I really was Stage IV for six years before knowing I had it, so I had it a long time with no treatment.

    I applied on a Monday and was approved the following Monday. If you are Stage IV, there is a compassionate allowance where you qualify right away. My doctor did have to fill out forms for me, and they understood how I was feeling. You have to stop working, and the payments don't begin until the six month after you are approved. It's technically five months, but I think you get your first payment in the sixth month. You get full benefits as if you are retired. Yes, I had to wait 24 months for Medicare to start. I was on my husband's plan, so that wasn't an issue for me. Now that I'm on Medicare, my husband was able to retire as well.

  • kris_2000
    kris_2000 Member Posts: 93
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    I have also applied and agree with KBL. I applied just a few months after my diagnosis this year however. A relative that works for SS recommended it or I would have had no idea. I also have LTD and they do require applying for it. My SSDI benefits will be deducted from my LTD benefits and they pay the difference. I just went on LTD in November and I'm due to start receiving SSDI this month.


    exbrnxgrl - Your ability to go on disability might just be (rather, "have been" since you are retired) a matter of talking to your MO. Mine talked to me about work, how I'm feeling, and then left the door open for me to decide what I felt I was up to doing. When I was doing very badly, she strongly recommended I stop working but still let me make the decision.


    Also, if you apply for SSDI, please remember to tell them you are stage IV MBC. I didn't at first and the wait time was going to be considerably longer. Once I mentioned it, they said it would be expedited.

  • lauri
    lauri Member Posts: 59
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    Parakeetsrule, note that ALL withdrawals from IRA / 401(k) plans are subject to income tax, even if you don't have to pay the 10% penalty. The bonus of reducing your current taxable income by making contributions comes back to bite you later.