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Topic: MBC and Your Job -- what's your story?

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Nov 15, 2018 02:55PM

Moderators wrote:

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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Posts 31 - 43 (43 total)

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Jan 4, 2019 12:57PM gonegirl wrote:

Mlc96, does your job offer short and long term disability? You do sound as if you're qualified to take it. Also, Stage IV breast cancer gets fast approval through SSDI. I have gone on and off disability over the 7 years, depending on my situation. There is also a software called Dragon Naturally Speaking that allows voice to text at a computer. It is scary, but you do have options

uppitycancerpatient.blogspot.com Dx 1/3/2012, IDC, 4cm, Stage IV, Grade 2, mets, ER-/PR-, HER2+ Targeted Therapy 2/9/2012 Herceptin (trastuzumab) Chemotherapy 2/9/2012 Taxol (paclitaxel) Surgery 11/5/2012 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Targeted Therapy 12/7/2013 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 11/6/2015 External: Bone
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Jan 4, 2019 02:54PM Moderators wrote:

Selkie36, it's been a few weeks. Did you get the job offer, and if so, what did you decide. It does sound like you have a lot going on, with the homeschooling and treatments. Let us know how you are!

mlc96, sorry to hear about your situation at work. This is a tough one, indeed. Have you had an heart-to-heart to hear what your employer could provide in terms of short-term disability. Take a look here: Working after a metastatic breast cancer diagnosis. We're thinking of you!



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Jan 10, 2019 12:37PM mlc96 wrote:

My employer does offer short and long term disability. I used STD in 2017 following my initial Mets diagnosis, and applied for LTD but was denied as the LTD company determined I was "stable" after 4 months of chemo, because the bone mets were reduced. I barely recovered from that chemo and had to go back on it again in 2018. I think my employer is concerned about me being in and out of work, like I don't have a regular schedule. I'm sorry if my cancer is inconvenient for them! It's certainly not convenient for me or my family. Sorry to vent! I am just concerned that if I'm out again they will determine they can do without me.

Dx 4/26/2012, IDC, Right, 6cm+, Stage IIIC, metastasized to bone, Grade 3, 0/8 nodes, ER+/PR+, HER2+ Targeted Therapy 7/10/2012 Herceptin (trastuzumab) Surgery 11/1/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 1/27/2013 Whole-breast: Chest wall Hormonal Therapy 5/1/2016 Femara (letrozole) Dx 12/22/2016, IDC, Right, 6cm+, Stage IV, metastasized to bone, Grade 3, 1/8 nodes, ER+/PR+, HER2+ Targeted Therapy 1/5/2017 Herceptin (trastuzumab) Chemotherapy 1/6/2017 Taxol (paclitaxel) Chemotherapy 11/20/2018 Navelbine (vinorelbine)
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Jan 11, 2019 08:53AM gonegirl wrote:

mlc

I called the folks at https://www.cancerandcareers.org/ and they gave me incredibility helpful advice on job protections, etc. You might want to give them a call. If you're company is a certain size, you'd certainly be able to use FMLA to protect your job.

Susan

uppitycancerpatient.blogspot.com Dx 1/3/2012, IDC, 4cm, Stage IV, Grade 2, mets, ER-/PR-, HER2+ Targeted Therapy 2/9/2012 Herceptin (trastuzumab) Chemotherapy 2/9/2012 Taxol (paclitaxel) Surgery 11/5/2012 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Targeted Therapy 12/7/2013 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 11/6/2015 External: Bone
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Jan 23, 2019 09:34PM ladinred26 wrote:

I’ve recently been dx with metastatic bc. Have a liver biopsy in two days to determine pathology. From there I’ll get treatment plan.

I am the director of a chamber of commerce, which is a small non-profit. I have no benefits except vacation and sick days.

I just finished my original treatment in July 2018, so barely 6 mos ago. I struggled at my job During that treatment. Not only did I have to deal with my cancer About four months after I started treatment one of my employees was diagnosed with stage iv lung cancer. I have only two part-time employees

The year plus of treatment was hellish. I had surgical problems and needed hyperbaric oxygen treatment. This entailed five hours a day in an oxygen tank on top of trying to work full time. This went on for five weeks.

In addition My employee was falling more ill and eventually passed away.

The pressure was incredible. I failed repeatedly at work and continued to struggle months after treatment finished. Only recently have things gotten slightly better. I’ve been job hunting for months as I find no joy in this job.

Tomorrow I am going to call my disability lawyer and discuss how to go on ssdi. Many years ago I used to make loads of money but the last few years I scrape by. Needless to say I think I can make ssdi work for now I see u can work a little bit on disability so once thing starts are more settled I will look for a part-time gig to keep me busy.

mindi Dx 5/31/2017, ILC, Right, 6cm+, Stage IIIC, ER+/PR+, HER2- Chemotherapy 7/12/2017 AC + T (Taxol) Dx 1/2019, ILC, Both breasts, Stage IV, metastasized to bone/liver Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Tissue expander placement
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Feb 10, 2019 09:55PM - edited Feb 10, 2019 09:55PM by Strong65

I am in a different position then most of you. I have a particular skill set that can be difficult to replace. I was diagnosed stage 4 from the start with bone mets 4 years ago. The company I worked for was wonderful, but I quit working on the advice of a financial advisor. My husband and I are planning on going our separate ways when our youngest graduates this year. So the financial advisor explained how SSDI and Medicare work and told me I needed to get the ball rolling while I was insured by my husbands employer. So while I was waiting for Medicare I was on his insurance. I'm glad I took his advice as I find I still get tired easily and don't know that I could have continued working FT. I needed to be able to focus and any errors would have been a costly mistake. I started working PT a year and a half ago in a completely different position and am making more on SSDI and working PT then I did working FT. The company I am working for offers dental and vision insurance so I have them covered as well. For me this was the right choice...I also still get LTD through my former employer and the life insurance I had with them also came with me.

Dx 11/28/2014, IDC, Right, 4cm, Stage IV, metastasized to bone, Grade 2, mets, ER+/PR+, HER2+ (FISH) Targeted Therapy 12/17/2014 Herceptin (trastuzumab) Targeted Therapy 12/18/2014 Perjeta (pertuzumab) Chemotherapy 12/18/2014 Taxotere (docetaxel)
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Mar 12, 2019 02:05PM Moderators wrote:

Bump

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Mar 13, 2019 05:40AM AllyBee wrote:

I found out about my original breast cancer diagnosis one week after starting a new job and they were absolutely fantastic. My immediate supervisor and the lady I shared an office with at the time are older ladies and became like second/third mums. I had next to no leave saved up but had my surgery's just before Christmas so I didn't need to take too many days off. I worked all through chemo and radiation, I am able to work remotely so still managed to work even when I ended up in hospital with neutropenia a few times. They significantly reduced by workload which I found frustrating but I know their hearts were in the right place.

Not quite a year after finishing treatment I found out I had a brain met and was rushed into surgery with very little notice. Again my workplace was fantastic, I took about 6 weeks off and they paid me the whole time without taking any of my leave. They are very understanding with all the appointments but I also put in lots of extra hours to get my work done. I am doing well at the moment and they have increased by workload a little too much. No one in my office realises that I will most likely die from this, I find people don't know much about metastatic breast cancer unless it has affected someone they know. I am not going to explain to them that my condition is terminal unless I need to.

I have had to change by career aspirations. I used to strive for advancements and promotions but now I feel I need to stick with a job that has income protection and understands my situation. I don't feel I could start with a new employer and have the flexibility I need to attend appointments. I do hope that my current employer will still consider me for promotions but I think it will be unlikely. I'm struggling with when I should consider giving up work, part of me thinks that life is too short to spend behind a desk, however I only have income protection for 2 years and will only be able to cash in my insurance when i'm deemed to have less than 24 months to live, I hope to be around for a few more years yet so will continue working while I feel well. My dr's are surprised that I still work, but having metastatic breast cancer doesn't stop the bills coming in.

Overall people have been lovely and I know I am extremely lucky after reading some of the experiences on here. I do get a lot of unwanted advice about my diet, opinions on what might have caused my cancer, stories about someone they know who had brain tumors and is fine etc etc. I try to just smile and remember that in general people either mean well or just don't know the right thing to say.

Dx 11/2016, IDC, Right, 1cm, Stage IIB, metastasized to brain/other, Grade 3, 2/13 nodes, ER-/PR-, HER2- Surgery 12/21/2016 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Dx 6/2018, IDC, Stage IV, metastasized to brain/other, ER-/PR-, HER2- Surgery 7/3/2018 Chemotherapy Carboplatin (Paraplatin), Gemzar (gemcitabine) Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy AC + T (Taxol)
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Apr 10, 2019 04:11PM JanetMara wrote:

Hi Lumpie,

I am so sorry to hear that your employer was not so supportive,they should be more sympathetic because we are as valuable as the other staff and we work the same as they are.

I took a disability (SDI--California which is 55% of what you made in the last 12 months divided into quarters and they calculate and base it from the highest quarter,there was a waiting period of 1 week from the start of disability) 06/30 to Nov.30,2017 and my employer and supervisors were supportive,some of them also had cancer and experienced the same regimen and side effects as I did. My husband carries my medical insurance though,I do not get it from my employer.I went back to work full time 12/01/2017 to 11/19/2018 and had another cancer recurrence above my collarbone and I started CHEMO 11/19 and took another disability 11/20 to present,lots of harsh CHEMO complications and am planning to go back 06/01/2019,hopefully no complications if I start radiation by May.

Dx 5/22/2016, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 5/5 nodes, ER-/PR-, HER2+ (IHC) Chemotherapy 11/28/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Dx 7/2018, DCIS/IDC/IBC, Left, 6cm+, Stage IV, metastasized to other, Grade 3, 5/5 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 11/9/2018 Perjeta (pertuzumab) Chemotherapy 1/25/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 3/9/2019 Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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May 9, 2019 03:13PM tinyturtle wrote:

I am my own employer and I am on disability. I got my diagnosis 3 months after signing a lease on my first retail spot. I have a small art school that I was running by myself with an assistant.

I am unmarried and I don't have children. My path would have been different for sure if I was/did. I feel awful for women who are working so hard just to keep their insurance for their kids. It makes me so sad because I can't imagine having to be a consistent 40-hours-a-week worker. If I am up and on my feet form more than 4 hours I'm tired -- if I push it six I'm in pain -- any more than that then I can't get out of bed the next day. This is just fatigue & pain-- what about all the gastrointestinal problems and the cognitive problems?

I used to be able to teach all day long -- on my feet. Well that plan fell apart! Right after my diagnosis I went to an MBC support group and the women there told me to apply for disability NOW because if I wait it will be harder. I guess if you wait, it is harder to get unless it is linked to a big change -- like starting a new treatment. So I applied and got it. Because I have a business they were harder on me and I'm still provisional in a sense -- they will be checking in next year. They said 'How can you be disabled if you have a business?' And I broke into tears -- I told them I had a lease I couldn't break. Tears and bad language somehow did the trick and they wanted me off the phone so they sent me paperwork.

The last 2 years have been crazy but I have kept my business open. I suddenly had to hire people to do my job -- I wasn't ready for that and I was too sick to train them. It was bumpy, but I just kept doing what I could and 2 years after diagnosis I am still doing it. I got into debt to pay my employees but we're finally seeing the light. I lived off of the charity of family and friends until I got disability. Now I have the stability of $1400 a month coming in. I think I'm allowed to make $1100 on top of that through work.

All I care about is that the business can support itself because it brings me joy and keeps my mind active. We are starting to be profitable which scares me. I fear the gov't will say, 'you're obviously fine' -- but they won't understand that I can suddenly be very, very 'un-fine' at anytime. If they say I have to give up the business to keep my disability income, I will -- because I can't pull it off without that stability of guaranteed income.

If my business starts being more stress than joy I will also give it up. I don't want anything stealing time or health from me.


p.s. About insurance-- Before my disability came in I was poor enough for free health care. Because of a cost of living increase my second year of getting disability income, I was $20 over the limit for my health care (there was still no profit from the business). Regular insurance co-pays would have killed me. I found out about BCCTP - the Breast and Cervical Cancer Treatment Program -- it gives you 100% free Medi-Cal without the income limits for as long as you are in treatment. It was difficult to figure out - I was on the phone with so many social workers who knew what i was talking about but could not agree on how to get me enrolled. Eventually I found free legal aid and they figured it out in a day. It was the greatest day ever -- I could get my Ibrance refilled!

When I've been on disability for 2 years (I think), I will be manditorialy switched to Medi-Care.

p.p.s. I live in California and things may different state to state.

Dx 6/30/2017, IDC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2- Hormonal Therapy 8/4/2017 Femara (letrozole), Zoladex (goserelin) Targeted Therapy 9/1/2017 Kisqali Targeted Therapy 3/9/2018 Ibrance (palbociclib)
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May 24, 2019 08:47PM drwendy wrote:

Hello all! Originally diagnosed in 2011, mets found pretty much everywhere (long story) Oct 2019. I'm a veterinarian and worked part time from August until that October diagnosis, then was off for a month, followed by another month of part time. My boss has been fantastic. Because I've had progression on several chemos I'm frantically trying to teach the younger docs at my practice how to do all the things that only I know how to do so that whenever I'm unable to be there, they'll still be able to do the things I did (mostly the more complex surgeries). I will work until I can't work anymore. So far SE on the failed chemos (Halaven and Verzenio) have been very mild. I feel absolutely fine. We'll see how I do on Xeloda.


I am very lucky with my work and how good I feel. I'm homicidally livid that I'm in this position at all.

Dx 11/3/2011, IDC, 5cm, Stage IIB, Grade 3, 0/4 nodes, ER+/PR+, HER2-
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May 25, 2019 10:12PM Moderators wrote:

Dear drwendy,

It is good to see you here and thanks for sharing this part of your story. We are very sorry to hear what is going on and hear how livid your are. Please keep us all posted on how things go. We hope to continue to see you around the boards.

The Mods

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May 27, 2019 08:11PM CursiveStars wrote:

I was dx stage IV de novo at age 26, I'm 34 now. I had been with my job as a dialysis tech for about a year. My old boss was really good to me about my treatment schedule and doctor appointments. My new boss forced me into a desk job and treats me like an inconvenience. When I had radiation a few months ago despite me making arrangements with her and the other staff that I'd have to leave about an hour and a half early for 3 weeks she would make remarks about what an inconvenience it was and sent out emails with other coworkers cc'd asking if I could communicate my schedule better so everyone knows when I'm coming and going. She also inferred to me that I wouldn't have cancer progression if I stopped eating sugar and carbs. I've been on FMLA recently for pain control and liver complications. I go back next week and she's already annoyed I need a half day off 3 weeks a month for chemo. My coworkers are good to me so I can't complain there. I enjoy working, it gives me a sense of purpose and socialization. However I don't feel secure in my job anymore. Time will tell.

Dx 1/14/2011, IDC, Right, <1cm, Stage IV, metastasized to bone, Grade 2, 19/29 nodes, mets, ER+/PR+, HER2- Targeted Therapy 2/1/2011 Avastin (bevacizumab) Chemotherapy 3/1/2011 Taxol (paclitaxel) Hormonal Therapy 12/15/2011 Arimidex (anastrozole) Surgery 3/15/2012 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Radiation Therapy 5/1/2012 Breast, Lymph nodes, Bone Hormonal Therapy 2/1/2014 Faslodex (fulvestrant) Radiation Therapy 9/22/2016 External: Bone Radiation Therapy 10/6/2016 External: Bone

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