How has breast cancer affected your income?

Merridith · 02-29-2008, 10:19 PM

I am interested in hearing from women who were working when they were diagnosed with cancer - how has it affected your income? I am especially interested in women who are MORE than 12 months out from diagnosis.

Lori R · 03-01-2008, 10:07 AM

I am relatively newly diagnosed (October 2007) and am pleased to see the topic of finances on the current posts.

I am extremely anxious about the uncertainty of my ability to continue to work through potentially repeated courses of chemotherapy. (I have liver mets)

To date, my employer has been very supportive. They allowed me time off for recovery from surgery (6 weeks) and return to my original management position. I continued to work through the 6 cycles of Taxotere+Herceptin. But....the honeymoon is over and I can feel the expectations getting back to the pre-cancer levels.

I am not confident that I can continue to count on the same levels of support being there if I had to return into treatment.

I am also using my insurance. I haven't figured out what the insurance implications would be if I quit. (I do know I could use COBRA for a period of time)

Just one more uncertain, anxiety provoking aspect of this journey.

I keep trying to find the road map for this journey but I guess there just isn't one. Maybe that is the lesson I am to learn from this. I certainly focus on each and every day as a gift MUCH more than I used to!!! For the moment, things are going well.

Lori R · 03-01-2008, 10:16 AM

OOPS....I guess a was a little too excited by the topic and I just noticed the request to be 12 months from diagnosis.

Can I say that it "feels" like a year?

Lori

KRISS · 03-01-2008, 02:29 PM

I'm 15 months out and have to say my income is the same as it was before BC. I received chemo every two weeks so I would take the week of chemo off and work the following week. I was fortunate that disability took care of most of my time off. Other than that I worked and my employer was and is fantastic about my time off. I never miss a day now but sometimes still get very tired that I might leave a little early.

chrisy · 03-01-2008, 05:03 PM

I'm...lets see...3+ years out from stage IV diagnosis. Lori, I too had/have liver mets.

I'll share my experience. I had 6 months of chemo (TCH), and I "worked" throughout most of that time. My employer has been unbelievably supportive. In fact the first day I was off, my boss called in my entire staff and told them "this meeting is not about getting the work getting done, you are a great team and I know that will happen. This meeting is about how can we show Chris how much we love her."

My doctor ordered me to take a month off but I was going totally crazy so ended up going back to work after about 3 weeks. The owner of the company told me I could come back to work, even if all I did was filing or sit in my office. I did go back to work pretty much full time (partly from home especially during flu petri-dish season) and gave it my best shot. Although I admit to sitting in some meetings zoning out like a head on a post! (At least I had an excuse!).

I've been working full time (40+ hours/week) ever since then and have been treated very fairly in terms of my salary - and have been allowed much flexibility in my schedule to accomodate my various treatment adventures.

I, too, feel the "pressure" of expectations to continue to contribute at work, but it sort of takes the form of they want and expect me to be there for a long time doing what I'm good at - and I'm determined to go along with that!

I know I'm very blessed, and that not everyone has the good fortune to not only be treated fairly, but to find true love in the workplace.

tdonnelly · 03-01-2008, 07:09 PM

I was working at a dry cleaners at the time of dx and had to leave; too many chemicals and poor ventilation was making me sick. I was on Unemployment @ 26 weeks. I was turned down from opportunities when perspective employers learned of cancer treatments for the next year. (It was hard looking for work with no hair, eyebrows, eyelashes and feeling sick from the chemo) I was lucky to find a part-time position 20 hrs per week only. I have continued to look for full-time work to no avail. Now my physical disability thanks to Taxol makes walking very difficult as is sitting or standing. Breast Cancer and the side effects has forced me to apply for Social Security Disability at age 48; not a positive financial future.
Tamara
Invasive Ductal Carcinoma 10/2006 HER2+

Jackie07 · 03-02-2008, 04:23 PM

I thought I had typed up something the other day (yesterday?) but couldn't see it. So I am writing the story again.

When I had my first brain surgery, I took two months off (surgery, PT, OT, ST) and went back to work earlier than I had planned because I saw on the local newspaper that they are advertising my position. There was a change of management and a little more than a year later, I was told to clear my desk. I checked around and found out that in Texas, the only thing I could do was to file for unemployment. I remember the humiliation I felt (literally crying the whole time while in the unemployment office)

The 2nd brain surgery, even though just Gamma Knife, I still lost my newly aquired (took me almost 10 years to get back to my profession full time) full-time supervisory job.

I was fortunate to get a part-time low paying job which kept my brain function intact (because I was still pretty much recovering from everything.)

My first breast cancer happened while I was on unemployment. I went through the teacher training program while I was doing the radation treatment. And I was substitute teaching the first year after I passed the teacher training program because I couldn't find a full time job. Now I am teaching full-time as an intern and breast cancer struck me the second time. My principal had just told me that she's not going to renew my contract.

It's bad news. But I've got so used to hearing those words, I am not even worried about it. Seems like every time I lost a job due to illness, something better (not necessarily moneywise) would happen to me. I hope I can find another job soon - and if the teacher training program would extend my internship, I'll continue to pursue a teaching career. Otherwise, I'll check with the rehabilition commission counselor and see what he's got to offer.

Mary Jo · 03-02-2008, 05:38 PM

I'm in the "not at all" category also and also in the Thank God category. I am so incredibly thankful for our wonderful insurance that paid everything ~ and I mean everything! All we were responsible for was a 12.00 copayment and that was only for those times I actually saw the doctor.

I do work a part time job. I work 4 days a week - 5 hours each day. Which did work perfectly being on chemo. My day off is Wednesdays and that was my chemo day - bi weekly. I always took the Thursday and Friday off following the chemo day and was USUALLY ready to be back at work by Monday. During A/C I think I missed one or two Monday's after chemo. While on Taxol I only missed the Thursday and Friday after treatment.

Like Chris, I had an awesome support system at my job. They did for me whatever I needed - were always willing to get me a sub when needed (I am a food server at a 4 year old kindergarten - I feed 130 little peanuts breakfast and about 145 little peanuts lunch) I do work a lone so when I was off someone else did have to come in. They did have me train a sub before my chemo journey began and she was my replacement whenever I couldn't be their. It worked perfectly.

Like I said.........I know how fortunate I am and never took for granted the wonderful insurance coverage we had or the good health I had during chemo.

Interesting topic........

Mary Jo

Colleen007 · 03-02-2008, 05:54 PM

Luckily, I had long-term disability insurance through my employer, so I still receive 60% of my salary. I have been out on LTD for over 2 years now.

Yorkiegirl · 03-02-2008, 06:51 PM

Marejo your Insurance sounds alot like mine. ALL was paid for every thing except my $12.00 Co-Pay when I saw the Doctor.

We are retired Army (as of mid-2004) and opted to keep our Military Insurance. It has really been wonderful and not once has anything ever been refused.

JenniferAlice · 03-02-2008, 08:01 PM

Great thread.

Anybody know if you pay income tax on the 60% disability?

Jennifer

TSund · 03-02-2008, 08:57 PM

Here's a related question: the husband of a woman with stage 4 bc that we met at Baylor very early on pulled me aside and said if Ruth EVER goes to stage 4 make sure that she files disability right away. I don't think this had to do so much with work as with health insurance? Something to the the effect that medicare would kick in two years after claiming? I don't know how continuing to work full time affects this or if it does. All I know is that he was very adamant that this mistake had cost them thousands of dollars. Perhaps Medicare would have picked up some of the medical costs not covered?

weezie1053 · 03-03-2008, 12:34 AM

My journey started with the surgery in Sept 06. I took 4 weeks off, and I returned to work. The entire time I keep up with what was going on in both my job and my company via emal. I started that bi-weekly chemo about 3 weeks later, and the third treatment kicked my butt and I ended up in the hospital due to low white and low red blood counts. Got over that episode, and I dove back to my job once again.

My company was very helpful; however, they were not very knowledgeable about our STD and LTD plans. They immediately assumed I would take the low road and go out on disability. A young gal in the HR department even told me I would have to pay the COBRA since I was unable to work full time. I contacted the broker who sold our company the disability plans, and she actually sent me their contract with out compnay. I discovered that provisions were made in the plan which allowed me to work and be on LTD. I had to be out 20% of the month to be eligible. By this time, I had exhausted my sick and vacation leave, so I was welcoming this plan. I would plan my chemo on Friday, which was my 20% for the week. I would often return to work on Monday and start all over again. I will admit as I got closer to the end of the treatment, I did more than satisfy my 20%. I also tracked my time worked at home. I never missed completing our most detailed monthly financial report. I also had a HR gals tell me I would have to pay COBRA for my time not worked. I again referred to
the Broker's policy with my company. I fought that battle and won.

I often wonder if God decides to challenge me again with a recurrence would I take the high road or the low road. I think we all know that although we stronger mentally for having gone through our journeys, we do have more physicial limitations.

I also think it depends on age at diagnois. At 52, I was in great shape. At 54, I suffer with fatigue, recurrence of asthma, etc. I am not complaining, because I am still getting plenty of hugs and kisses from my grandson who is my candle who helped to guide me out of the complexities of BC.

Hang in there...it will get better. Be your own adversary insofar as your benefits. Get copies of their handbooks with their brokers. HR not uses me as an example as if I am a bionic woman. It is not that, but because they did not fully understand their own disability plans and its provisions, I had to be become my own advocate and use the past expereinces of others like ourselves.

Louise

Believe51 · 03-03-2008, 11:13 AM

I casted Ed's response to your poll, he used to be an electrician and finish carpenter full time and had a part time business. Now 100% disabled collecting SSI. Hope this counts but if it doesn't just minus him out. Thanks for the poll>>Believe51

Merridith · 03-03-2008, 09:08 PM

Hi Believes:

Your husband counts! This isn't a scientific poll. I am just curious to know how cancer affects people's income. So far, I am actually quite impressed with the number of people who seem to indicate that their employers supported them and that their income is the same. It is actually much better than I thought.

On the down side, statistically there are a lot of women who are quite comprimised.

I am really thrilled with how many people have answered so far. I hope that more people want to share this info. I have been wondering how long term survivors have been making out after their illness.

janet11 · 03-04-2008, 06:51 AM

The main thing for me was that I was able to switch from commuting to working from home. I moved my computer from my upstairs office to the kitchen table for the duration of treatment so I didn't have to climb stairs. This allowed me to work through chemo, but take a nap when I needed. At my end of year review, my manager said he was surprised and happy at how much I accomplished despite what I was going through.

By not having to spend 2 hours/day commuting, my energies could go into coping with treatment and with getting something accomplished "at work" instead of into the driving time. And it meant I had to take very few full days off as 'sick'.

basset girl · 03-04-2008, 09:15 AM

I was working full time (40 hours) as a legal secretary when I was diagnosed. The entire office was wonderful. During AC I missed about 2 days each treatment and left early several days. They paid me regardless. I can never thank the firm enough. Everyone was so good to help me out. During Taxol/Herceptin I only missed half a day every week to get treatment. I am a single mother of an 11 year old daughter. I had to work to support us. I worry about what will happen if I recur. I will still have a house payment, car payment etc. We do have long term diability which is good. I just have to give this to God every morning in prayer. Otherwise I would definitely be a basket case. I have a wonderful extended family too that helped us and I know they will be there no matter what.

AlaskaAngel · 03-08-2008, 03:31 PM

I've been reading the responses to this issue but not posting, to try to find the best words I could for it.

It seems to me there at least 3 large groups of people in our society who are missing from the responses to the survey. (Read through the responses posted thus far, and see what you think.):

1. Those with no insurance at time of dx

2. Those who are self-employed at time of dx

3. Those whose work is based at a significant distance from treatment centers

Since I fit well into 2 of those categories I will try to respond for the missing. These folks aren't figments of my imagination, since we all know a large number of people are uninsured, there are many who are self-employed, and there are a lot of people in rural areas.

For me... as a sole proprietor at time of dx... but with insurance coverage from a spouse... living in a town with a small hospital hundreds of miles from oncologists and any major cancer treatment like radiation...

The first thing I faced was the question of how to continue working when my work had to be done locally. Some colleagues were willing to try to step in for me occasionally on actual treatment day, or on days when I was in travel status between my town and the cancer center in Seattle. It never was a question for me of whether or not I could cope with treatment AND work, it was only a question of how. It is far more difficult for others living in smaller Alaskan communities where they not only often have to fly south or to Anchorage, but also have to arrange transportation and housing just to see a PCP to begin with. For these people, especially those without a significant other and/or with children, the dx is not just fraught with the fears of cancer but fears for how to manage daily life. For myself, due to advances in technology I was able to turn my job into one as a computer commuter and take it with me wherever I went; but that also means that I have no time off regardless of what treatment is like.

This is one reason why I feel it is so essential to speak in favor of those most likely not to benefit and who may in fact not actually benefit from the standard recommendations for extensive toxic treatment. While we know that there are some who do benefit, the constant pressure for everyone to "throw the book at it" as if that is the best answer for everyone and as if anyone who questions it is nuts, it may help to explain how crippling that can be in some situations. To scare everyone into doing treatment that can leave them deeply in debt and unable to work is neither logical nor compassionate. To leave them with the impression they have not "done enough" when they have so little choice can be very cruel.

AlaskaAngel

Merridith · 03-08-2008, 08:05 PM

I agree with you Alaska Angel. However the poll feature is limited to only 10 questions and you can't "nest" them. i.e. ask further questions based on responses.

So I tried to ask questions that were general enough to capture responses from a wide audience - but parochial enough to make sense.

There was no room for specific questions relating to insurance and other issues.

What I really wanted to find out was how WORKING income was affected by cancer. This is a separate issue from access to health insurance, wage indemnity and self-employment. These are all worthy questions, but I only did the one poll up.

Merridith

AlaskaAngel · 03-09-2008, 02:48 PM

Merridith,

Yes, I agree, the poll feature is limiting. I'm not certain from your post whether income for working individuals who happen to be self-employed should be excluded, so that the poll percentages only cover the population of bc survivors who are employed by others?

AlaskaAngel