Were you worried about losing your job at diagnosis?

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Were you worried about losing your job at diagnosis?

Postby ginabeewell » Sun Sep 04, 2022 1:59 pm

Starting a new project at work and would love an informal poll from folks.

Our CEO recently went through his own treatment and says he was shocked how many people thanked him for being public about his journey - citing their own fear to tell a manager about their diagnosis lest they get fired.

That makes me curious about two things:

1) When you (or your partner / child) got diagnosed, were you worried about losing your job as a result of treatment/care?
2) Did concerns about job security impact how public you were / weren't about said cancer treatment?

I know that social support is statistically linked to patients being better able to manage the emotional / logistical strain of a cancer journey; I believe I've seen a few things linking it to better outcomes as well.

So what I'm trying to figure out is - would people be more likely to seek / get social support if they felt job security when diagnosed?

Would love your take on this! Thank you!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

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Re: Were you worried about losing your job at diagnosis?

Postby Rock_Robster » Tue Sep 06, 2022 10:32 am

My experience is a little different because I’m not in the US, and I realise I have some privilege around this too. But it’s a good question and wanted to kick this discussion off and contribute where I could.

My first work-related fear was not “will I lose my job?” but rather “will I be able to work again?”. I was 36 years old and the sole breadwinner for my household, so felt a lot of pressure to keep an income coming. I had been with my employer for around 15 years so thankfully had enough annual leave, sick leave and long service leave owing that I could take the first year of my treatment off with pay. I also had some income protection insurance which would partially cover any gap.

I was living and working overseas so I really had no choice but to tell my employer as I’d elected to repatriate for treatment. They were amazing about it - within 2 weeks my wife and I were on flights home, they arranged a temporary apartment for us near the hospital until our ocean freight belongings arrived (took almost 5 months), and extended my international health insurance so I could start treatment back home without any delays or costs. I had three very senior leaders in the organisation (coincidentally, all women) personally step up to support me through this.

As a result of this, I’ve generally been very open with my employer about my condition and treatment. I’ve learned that, generally speaking, the more information I give them the better equipped they are to try to accommodate what I need. I haven’t been entirely transparent about potential prognosis - mainly because I’m concerned about putting that on them, but also because I’m afraid it will spook them, and I want to be the one to decide if/when I stop working, not them.

My main regret is that it is very difficult in my current role / industry to work part time, which I think at times would be a great solution for me personally. Our work is very much “all or nothing” in terms of projects. I currently sometimes do part time hours unofficially or work from home when I need to save on energy, but I worry it puts a burden on the team and can be frustrating at times. I’ve been very transparent with my direct reports, and they’re incredibly supportive. However given it looks like I’ll be restarting systemic treatment soon, I’ll probably need to formalise something around these ways of working a bit more.
40M Australia
2018 RC, 12cm high
G2 EMVI LVI. 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA: Nov-18: 14 then <2. Jun-22: 5. Sep-22: 10. Nov-22: 19
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
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NED 2 yrs
11/21 Liver met, sub-cm lung things
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4/22 Liver SBRT
9/22 Small liver spot, PALNs
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Re: Were you worried about losing your job at diagnosis?

Postby Claudine » Tue Sep 06, 2022 1:56 pm

I can't talk for my husband, but my feeling is that he wasn't (once it became clear he wasn't going to die right away). He's a university professor, with good health coverage, and at time of diagnosis he knew several colleagues who had been through cancer/cancer treatment and were able to keep their position. He has over 1,000 hours of accumulated sick leave and hasn't taken any yet, thanks to a flexible schedule - and his ability and willingness to keep working even when feeling crappy! He's about to undergo ileostomy reversal surgery, and will very likely suffer from LARS for (months?) afterwards. He's teaching this Fall, and asked to do his lectures remotely - it was either that or taking the semester off, so the administration was more than happy to say yes!
This is probably quite different from someone working in the private sector.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22;
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20;
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22

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Re: Were you worried about losing your job at diagnosis?

Postby beach sunrise » Tue Sep 06, 2022 5:01 pm

At dx I felt the only ones to know are the ones who can help me when I need it. So, only 5 people I am close to know. Even my son and brother do not know to this day. As for work, same thought. Only 3 customers know and that is only because one of them had colon cancer (she is my govt auditor too). In my mind I think cancer will either drive some people/customers off or drive you crazy and I didn't want either.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
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Re: Were you worried about losing your job at diagnosis?

Postby sandkeeper » Wed Sep 07, 2022 4:56 am

Like RR, not in the US so my experience may differ, and also, my ongoing treatment has been less than others but wanted to give my perspective regardless...

At diagnosis, I immediately took sick leave the next day to give full attention to my sudden change of situation. I had a high stress and intense job and my mindset wasn't right to be able to continue that. So everyone knew: my colleagues, managers and even some clients. I was off for 12 weeks - the maximum before they could stop paying me a full salary - as I continued to stress about decisions around chemotherapy (I was borderline) even though I was mostly healed from surgery at that point. It was a while before I was fully 'present' mentally at work, but honestly I never felt I was at risk of losing my job. However, my job was a factor (albeit not the primary one) in my decision not to do chemotherapy... I didn't know how I would work while having treatment, and that was a worry.

Since being in NED-land, I've changed jobs more than once. Although I'm living like it's not coming back (because how else can I live?), I dare not reveal my cancer history to anyone for fear of judgment, in case it affects my career prospects. People who haven't had cancer don't understand cancer. They see someone who's had a massive medical issue (and sick leave) and who might do it again.

Only once have I revealed my diagnosis to work colleagues in my jobs since, and that was when a colleague was diagnosed with breast cancer at a similarly young age and I wanted to support her. Otherwise, I try to keep my cancer and work lives entirely separate.
31 year old male, dx Oct 17
Staged IIA post sigmoid colectomy
T3b N0 M0
No chemo
Oct 18: clear CT
Oct 19: clear CT
Nov 19: became a father!
Oct 20: clear CT
Nov 20: clear colonoscopy
Nov 21: no more CTs but still being monitored and NED
Aug 22: clear MRI (tailbone pain triggers a scan)
Nov 22: 5 years cancer-free, discharged from follow-ups
CEA: always 1

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Re: Were you worried about losing your job at diagnosis?

Postby utahgal7 » Wed Sep 07, 2022 9:23 am

I am a SAHM, but I was really afraid my husband would lose his job. Thank goodness for FMLA. After my diagnosis, I was reluctant for him to tell his co-workers.

Financial stability is always in the back of mind. I worry about potential loss of his income, bankruptcy, etc. As if cancer isn't scary enough on its own, the financial pressure/anxiety is enormous.
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung

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Re: Were you worried about losing your job at diagnosis?

Postby Nor Cal » Thu Sep 08, 2022 8:42 am

My work has been fantastic. Very flexible allowing me to work when I'm available. I'm permanently remote even though I live a mile from my office. Use my own car for travel and get reimbursed, etc... I work for a non-profit in the US.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
July 2020 - Present: 37 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

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Re: Were you worried about losing your job at diagnosis?

Postby roadrunner » Sun Sep 11, 2022 3:17 pm

A bit of a rant coming here, so you may wish to avert your eyes.

I have a fairly senior corporate position. When I was diagnosed, I was concerned about whether I’d be able to keep my job. I liked the senior leaders of my company, and they liked me, but as many of us know, cancer tests everything. They allowed me to go fully remote. This was about six months before the pandemic. On “just” the cancer. Didn’t take a day of leave. I was grateful and happy then, but it almost makes me tear up now. And I’m not given to such things, having grown up in the US in the ‘70s.

Why? Because I now see, 3+ years later, how crucial this has been. Remote work enabled me to focus on my care, and continue to do my work at a high level—work that I truly enjoy, and which was at times a crucial distraction—as opposed to dragging myself into the office, exposing my then weakened immune system to (even pre-pandemic) pathogens, missing my kids, and expending vital bodily defense capital. I witnessed my dad doing that in the ‘90s, going through 5FU. It was terrible, and he was a much, much tougher guy.

As I said, I was grateful, so I tried to double down on my work. (Admittedly, during FOLFOX and a few other “adventures,” I was was really not doubling down, more like .5xdown, sometimes : ) Whenever the smoke cleared, I really did try to sprint. Then the pandemic happened, and we all know how that went. I have remained remote. So far so good. How good? My rad onc says: “Keep doing what you’re doing, your immune system is doing a great job.” I have changed my diet, maintained a relatively even keel (relatively, because I’m given to stressing out and cancer is a hurricane), exercised (running, walking, recently weightlifting), and spent three unexpectedly full and happy years with my teenage kids. None of this would’ve happened without the option of being remote. No chance. And that doesn’t even account for the possibility that COVID would’ve gotten me when my WBCs were crashing. On top of that, I’ve been able to knock it out of the park at work. Technology is a fabulous thing. I’ve gotten projects done that were pending for years, had many other successes. My team also stepped up to make it all seamless. It was truly a win-win.

So why a rant? Because I know how lucky I was for it to go this way. My experience has driven home the madness of not allowing folks with serious cancer diagnoses to continue to work in this way. And yet I know it is far from universal. I’ve seen some stories of similarly enlightened employers, but I know many people are nowhere near as lucky as I have been. I am very concerned that flexibility around remote work that was created by the pandemic may be evaporating as the rear guard army of “face timers” take over again. Of course, I understand that some jobs are just not amenable to fully remote performance. But even there, I think the goal for cancer care should be to allow for—or should I say “take advantage of”—the opportunity for as much remote work as possible, even to the extent of temporary or permanent role flexibility or change. I think there are many win-win opportunities out there when it comes to committed, engaged employees who are confronting cancer. Many that aren’t being explored now, I fear. We —well, mostly employers—just need the vision and open-mindedness to grab them. I know that happened in my case, and I’m endlessly grateful for it. Importantly, my employer also got a doubly engaged, grateful senior employee out of it. And much good, effective work, too. And yes, I didn’t take a vacation for the first year, and just a short one in the second, and I worked all days and at all hours, whatever it took. But at my pace and discretion. That was easy and relaxing, because I was fully remote. I truly hope that others get the understanding I did, and that we support and expand the remote work option for cancer patients in the future.

Just my 2 cents ; )
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)

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Re: Were you worried about losing your job at diagnosis?

Postby Blakeacw » Mon Sep 12, 2022 10:11 am

Here comes my rant:

I was very fortunate that after an investment event the year before in 2019 - I had very secure employment as a C level executive and didn't even need to work if I didn't desire to ( both huge blessings ) My surgery and chemo started in the first year of the pandemic and our company had gone remote in March 2020. After telling my senior group everything when I had my surgery and a few weeks before chemo was to start in October 2020 - I continued to work a regular schedule - obviously - everyone being remote made that immensely easier since travel was very limited at that stage.

I found work to be a nice distraction and my team was super supportive around my appointments and obligations - it was a very emotional time for everyone - they are my " second" family.

Anyway , watching our folks struggle in the pandemic mentally- I shared my news companywide on a zoom that November - after my 2nd chemo treatment - it was helpful for others to see that everyone was struggling in some form or fashion.

In my past and currently - I provide a lot of support and grace to those undergoing treatment and also their caregivers. Worries about their income and insurance should be the last things on their minds. We provide a wide berth of support and are super flexible with work and time arrangements - as roadrunner mentioned - he comes back in improved loyalty and good karma.

We have an associate right now dealing with brain cancer - that's been difficult because her doctor won't clear her for even a limited return to work , and due to liability , we need that - bureaucracy I guess.

I detest big companies that go by " the book" and force people into work circumstances that are less than optimal financially and mentally - makes me quite angry to watch companies lose their sense of humanity.
Colonoscopy 8/2020 - cancer diag. 9cm mass
Colectomy 8/2020 - successful -margins cleared
2 /16 lymph nodes -m1 tumor deposit
Pt3 n1b

Port installed 9/20
Folfox - 10/12 rounds complete

8.6.20 - 8.7 Prior Surgery
9.4.20 - 3.0 Post Surgery
4.14.21 - 2.7
6.16.21 - 3.0
9.29.21 - 2.3
12.13.21 - 2.1
3.17.22 - 2.0
CT Scan 3/18/21 - NED
Signatera 3/16/21 & 6/16 & 9/16 12/13/21 & 3/17/22 & 6/17/22 - ALL 0.0
CT Scan 3/11/22 - NED

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Re: Were you worried about losing your job at diagnosis?

Postby Utwo » Fri Sep 16, 2022 7:52 pm

Back there I had long term disability insurance. It would have been about 50% of my salary.
It's not a lot but would have been sufficient for a more modest life style.

My son just finished medical school and before starting residence travelled with his friends to Japan during my surgery.
I was confident that in a worst case scenario he would have taken care of his mom/my wife.

It never was that stressful for me.
It was much more taxing for my wife and my son.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

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Re: Were you worried about losing your job at diagnosis?

Postby prayingforccr » Fri Sep 16, 2022 9:11 pm

This is/was me:

Ive done very, very, very little tutoring since dx and I do miss it.

Not for the money.

I miss being relevant and helping people.

Ive stayed afloat using lessons learned in a past life.

But I am terribly lonely and not contributing anything to anyone.

Ive written one study guide and plan four more.

They will be the definitive study guides for these exams.

I’m the best in the country at preparing people for these exams.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

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Re: Were you worried about losing your job at diagnosis?

Postby horizon » Sun Oct 16, 2022 5:15 pm

No. I had an amazing boss at the time and he actually held off on a big change for our group so that I wouldn't have any changes in insurance when I was in the middle of chemo.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 11 years NED). Is this real life?

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Re: Were you worried about losing your job at diagnosis?

Postby John72 » Sun Nov 06, 2022 7:30 pm


I work a government job and both my direct supervisor and the division head were people I’d worked with in previous assignments before they promoted. I had over 1,000 hours of sick leave built up as I rarely called in sick. I tried coming back to work during treatment on a part time basis and couldn’t do it. I lasted about 3 weeks.

Also had additional disability insurance on top of what my job provided so when I did exhaust my sick time, my income wasn’t cut off.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

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