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My oncologist and disability opinion

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I was originally diagnosed with 2B (++-) in 01/2014, 8 dose dense chemo, and 45 rads treatments. In 11/2021, I was diagnosed with MBC to pleura. They started my on Faslodex in 11/2021 and added Ibrance 9/2022. I’ve had a treatment failure and now have started Xeloda. The oncologist ran a Guardant 360 and the results returned no mutations and no recommendations for clinical trials.

When I was 1st diagnosed with MBC, she was so positive and told me that many treatments were available. After this latest failure, she said that my next course of treatment would be IV chemo unless new drugs became available.

Prior to this latest development, I asked them to fill out short-term disability paperwork. I was told by the oncology team that they EXPECTED their cancer patients to work. Of course, that send me into a world of pissed off I haven’t seen in a long time. I was told that I needed to talk with my HR team to see if they could move me to a job that required less mental concentration. They finally agreed to 3 months STD and completing my paperwork.


I feel like my oncology doctor doesn’t understand how the ‘real world works’. (At least my real world. . . ). She suggested that I 1) ask to go part-time (which immediately makes me lose all benefits)

2) ask to be moved to a less stressful job (huge pay cut)

I’ve talked with my HR team and if I can get my doctors to fill out Long-Term disability paperwork (and it is approved) that I could retire at the same time and keep additional benefits. This would allow me to get 60% of my pay until age 65. My PCP is encouraging me to apply and is more than happy to assist.

I’m beyond angry about the cavalier responses to my concerns. I’ve worked for the same company for 30 years and don’t like being talked to like a lackey.

I’m just curious if other oncologists have this same mindset. If you are on disability, when did you make this decision and did you have support from your medical team?

My apologies for the long post and hope I haven’t violated any posting rules. I’m just been stewing on this for months.

Thank you in advance for any input you are willing to provide.

Comments

  • cookie54
    cookie54 Member Posts: 662
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    Wow I am pissed off for you! I am surprised that they would say they "expect" their cancer patients to work and even the Stage IV patients. I am sorry that they are not supporting you when in reality if you wanted you to you are entitled to Social Security Disability when diagnosed with MBC. Of course you would like to have additional benefits and retire. We have worked our entire lives and paid in to the systems and we should not feel unworthy of benefits. Many of us including myself pushed through working with all the side effects as long as we could.

    When I was diagnosed Stage IV I did apply for Social Security Disability and I am currently on it now. This is not the way I wanted to leave my job at 56 years old I wasn't ready to go. Unfortunately cancer does decide some of this for us. I didn't discuss with my MO as it wasn't necessary. However in the past I have been on STD and LTD with her approval. I would definitely have your PCP who is supportive assist you.

    I wish you all the best and hope you get this settled. You definitely don't need any more stress than you already deal with. Sending positive vibes.

  • illimae
    illimae Member Posts: 5,572
    edited May 2023
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    I did STD and LTD with my MO’s support due to my work being mentally and physically taxing. She did want me to stay active though, which I do for overall health. Ultimately, we will decline with this disease and need less stress and more rest. I was able to medically retire with my benefits and live a relaxing and peaceful life. Push for your MO to complete the necessary paperwork and be blunt about your prognosis. They may not like it but it’s part of their job.

  • mitzygirl
    mitzygirl Member Posts: 5
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    Cookie54, thank you for your kind words and confirmation that the doctors attitude is ridiculous. Almost feel like it is time to find another doctor that is more supportive and less deflective of my long term prognosis. Cyber hugs to you!

  • mitzygirl
    mitzygirl Member Posts: 5
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    Illimae - Thank you so much for your reply. Definitely feel like this is going to be an uphill battle with the doctor. Honestly, I don’t know why she would care how I send my time. I have plenty of physical things that I enjoy doing and so regular activity shouldn’t be an issue. Thank you for your words of wisdom!

  • chicagoan
    chicagoan Member Posts: 963
    edited May 2023
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    Mitzygirl, I would switch oncologists and practices if "they" expect their Stage 4 cancer patients to work. My oncologist is very cool-she said initially she signs paperwork either way and leaves it to the patient to decide whether or not it would be good for them to continue working. Unless you live in a rural area and have no other choices, find a doctor who doesn't piss you off and leave you stewing for months. Sounds like she doesn't listen or have much compassion. Perhaps the practice encourages all patients to work because they get higher reimbursements from private insurance than from Medicare.

    I went on STD and then LTD within a few months of diagnosis because I had a stressful job and sensed it would be a matter of life and death for me. Now I work on a very part-time basis doing things that I find fun and enjoyable. If either of my part-time gigs get to be too much, I will simply quit.

  • illimae
    illimae Member Posts: 5,572
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    Mitzigirl, while I can’t speak for your MO. I can say that mine was initially somewhat disappointed by my request but after our discussion, it was because she’s seen many patients health decline once became less active and she finds me to be “an interesting case and wants to see me keep up normal activity as much as possible”. I assured her that I’d continue being active but this would allow me to rest when needed and do other things I wanted to. Maybe a deeper conversation could help.

  • moderators
    moderators Posts: 7,911
    edited May 2023
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    Hi @mitzygirl,

    I think @illimae raises a good point. There could be more behind your MO's desire for you to remain at work, so I think a longer conversation could certainly help her understand your situation better. If you however continue to experience difficulties with your MO signing off on the needed paperwork to get your disability approved, I would recommend reaching out to the oncology social worker or a patient navigator and have them assist you in advocating with her. For all the reasons you listed, it makes a lot of sense for her to sign off at least on your disability request. Let us know how it goes!

  • divinemrsm
    divinemrsm Member Posts: 6,003
    edited May 2023
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    mitzy, I don’t like your oncologist’s “one size fits all” mentality of EXPECTING all their cancer patients to work. It sounds like they lump everyone together without regard to any contributing factors, so really, they are treating the patients like cattle. There is no nuanced approach to personalized care such as taking into account that a person diagnosed with mbc has a different trajectory than lesser stage patients. Boo to that!

    In addition, I think an oncologist’s office should understand that you have very valid financial concerns about income and health coverage, and those are very important factors in your decision to file for disability. Imo, a good medical team would want to work with you so that money matters do not add to the stress of the diagnosis. Do not let them dissuade you from looking out for your own best interests. Do what you must to take care of you.

    My onc wasn’t all that supportive of my filing for disability but I filed anyway. I didn’t even have an important full time job, but I had to follow my own instincts. I was quickly approved. I cannot say what kind of information the onc’s office provided, and maybe all that was needed was a confirmation of metastases which from what I understand automatically qualifies for disability. So after two years from filing date, I was eligible for Medicare.

    What I had an issue with was collecting state disability money (I’d worked for a school). They sent me to their own doctor who denied my application. This doctor was a big quack (long story), so I got a lawyer and won the case. My point is, I did what I needed to do, even tho I’d never hired a lawyer in my life and it felt weird but I was so proud of myself for following through.

    One more thing: I have to question why after you’re just on your second mbc treatment your onc says iv chemo will be your next option. I’m no medical expert by any means, but somehow something about that doesn’t sound right. It may be time to seek a second opinion if you can. I wish you all the best. Hang in there, persevere, and treat yourself with much self care and compassion!

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Hi Mitzi,

    I would agree that a deeper conversation is required with your MO. My MO, who I think the world of, is a strong proponent of continuing to work as long as you can. Others have noted that, in their experience, patients who continue to be active and engaged in “normal life” have better outcomes than those who detach which colours their perceptions. However, we’re all different.

    For the most part, my MO’s view caused few problems. In fact, when I was first diagnosed with the right pleural effusion I was convinced I had about two years so it was a great relief when he said, we need to get you back to work! I had taken full sick time once things were lined up for me to start treatment. I continued to work a demanding, stressful job full time for almost five years. However, once things started to get harder for me, I found it difficult to navigate the conversation with my MO about disability although it had more to do with me, knowing his thoughts on the issue, than him. Once I asked to go on STD/LTD working reduced hours he was fully supportive and didn’t hesitate to complete the paperwork. (Like you, reducing hours without being on disability would have had a profound impact on pension entitlements and other benefits - retirement would have been disastrous as my medical coverage as a retiree is pathetic but on LTD I am fully covered.)

    I did find reduced hours helped but it was difficult to manage given the nature of my job and ultimately I decided to go on full LTD last April at the age of 60. I don’t regret it a bit and definitely couldn’t work at this point in the trajectory of my disease. I’m in Canada where I think it can be a bit harder to get approval from government but there was no hesitation and I was approved at all levels. I do find it annoying dealing with the company’s insurer at times as they continue to ask me to jump through bureaucratic hoops even though my liver is darn near exploding! My GP is completely supportive so dutifully fills out the paperwork…

    I hope this is helpful. As I said, all our situations are unique so your MO’s approach seems off. But perhaps there is more to this? Hope you can resolve this.

  • divinemrsm
    divinemrsm Member Posts: 6,003
    edited May 2023
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    Something I’d like to add to the conversation is that I had no intentions of detaching from life by going on disability. I don’t know if that’s what oncologists think is the reason why patients want to file for disability, but working is not the only way to stay engaged with life. For the record, I worked for several years after the mbc diagnosis until it became too physically demanding. But on disability, I had more time to actually take care of myself which added to better quality of life. It also gave me time to think about and get our finances in order. And I slowly started decluttering my house. I was able to have home projects completed before dh retired so our lives would be more comfortable. Addressing these and other matters decreased my stress which, from everything I read, is a good thing for one’s health! So for me, going on disability meant having more time to take care of that which was important to me and at my own pace. I was in no way giving up; I was moving forward .

  • chicagoan
    chicagoan Member Posts: 963
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    Divine, I totally agree. Not working allowed me to engage more fully with life. I had time to exercise, socialize and enjoy cultural activities-things that were difficult to do when I was working full-time at a job with crazy hours. Going on LTD helped me to focus on my healing and to start a satisfying new chapter of my life. I also agree that I think it is strange that the MO is acting like Mitzygirl has to go on IV chemo now after just a few other treatments. I haven't had it yet but I think it would be extremely challenging to hold down a FT job while undergoing iv chemo treatments. I stand by my rec to change MO's unless you totally love that person.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Good point Divine. I think the other wrinkle in my conversation with my MO is that we have known each other for a very long time. He’s been my MO since 2001! He knew I am quite driven (definite type A personality), loved my job and was good at what I did but he supported me 100% when my knees started to buckle.


    I do regret not stopping a bit earlier if I’m honest for the reasons you mentioned. I’m now feeling the pressure of not having all my ducks in a row from an estate planning perspective but I’m learning to let go of some of that burden as well. Given my situation, with a 92 year old mother who is resistant to getting rid of things and making key decisions, I honestly don’t know if I would be any further along had I stopped working in 2017! I might have been able to squeeze out a couple more bucket list trips which are impossible now….

  • emac877
    emac877 Member Posts: 675
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    mitzygirl - I'm not sure I have a whole lot more to add that hasn't already been said here. I completely agree with Divine that something doesn't sound right about jumping to IV chemo after one failure on Faslodex/Ibrance and that may be worth a second opinion. I don't know if you have that option to switch if the relationship with your MO doesn't feel right but it might be worth looking into it, if for no other reason than knowing all your options.

    For my part, my MO has said very little about my going on disability. He is supportive of my decisions either way but definitely seems pleased that I continue to work and continues to encourage me to be active. I use my PCP for any disability paperwork only because her office and availability seem a little easier to navigate when I run into snags. I am right now out on STD with pain in my back due to a met at T8 but have previously been out on STD for IV chemo and radiation tx at various points. I am a shift worker so my benefits don't change in terms of coverage, I just pay a larger part of the premiums. Because I am a shift worker I can pick up extra shifts when money is tight and I am feeling better so that has worked well for me. Like you, if I take a less stressful job I face a pay cut and also the loss of union protection so that has kept me in my current position even though it is more challenging physically. I am 45 and was diagnosed with stage IV at 42. I wasn't financially prepared to retire so it is my plan to work as long as I'm physically able and then go on STD and then to LTD and hopefully keep that going for a while before I have to apply for disability.

    Hugs to you. This whole process has a learning curve for sure.

  • superfoob
    superfoob Member Posts: 121
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    https://community.breastcancer.org/en/profile/emac877 : fyi: Most, if not all, LTD carriers require you to apply for SSDI (Federal Disability). Once approved for SSDI, the LTD company will deduct that amount from your LTD benefit. Also be aware that should you not apply and receive SSDI right away/concurrently with your LTD approval, once your are approved for SSDI, you may receive an initial benefit check for previous months from date of claim until approval. If your LTD company paid your your full benefit during that time, they will demand reimbursement (ie: the back pay benefits) so don’t spend it!

  • emac877
    emac877 Member Posts: 675
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    Superfoob - thank you. I am just now seeing this comment but I have indeed run into this. My STD is now transitioning to LTD and I got a letter yesterday requiring me to apply for SSDI so I am reading up on how to do that. The whole process of dealing with all of this paperwork and now dealing with several progressions is overwhelming.