How has breast cancer affected your income?

[Merridith]

I am interested in hearing from women who were working when they were diagnosed with cancer - how has it affected your income?

[Jackie07]

After my first brain surgery, I went back to work (part-time and then full-time) and was 'fired' a little more than a year later (by law, they have to keep my job for a year; so they waited for a year...) After my 2nd brain surgery (Gamma-Knife radiosurgery), I continued working full time. But I again lost my job a little more than a year later. I worked part-time with no benefit in another field making barely over minimum wage for more than three years. With new job training, I became a teacher a year after my first breast cancer surgery. Now I am undergoing treatment for the recurrence and just learned that my contract is not going to be renewed by the third school I've taught. If the teacher training program kick me out because I am over the 3-year (to get my teaching certificaterule) limit,
I will have to explore other options. I have called my Texas Rehabilitation Counselor just yesterday...

Oh yes, income... on average, my income drops to 1/2 ~1/3 what I made before cancer diagnosis with insurance payment doubled or trippled because no benefit.

[madubois63]

This could be a very interesting topic of discussion!! My story is long and drawn out and reads like a sad sappy story...

When first diagnosed, I continued to work through chemo and up until the mastectomy/reconstruction. I immediately applied for social security disability, but that didn't come through for six months. I did collect state disability through my job. This was all a drop in income, and hard to adjust too, but you do what you've got to do. After state disability ran out, I was able to collect unemployment (because my job didn't have a position for me to return too - mutual decision). Social security finally came through, and unemployment ran out after awhile (there was an overlap where I was getting both). I was able to get a small grants from CancerCare and ACS during treatments (they use to send weekly checks, but now send only one check per year).

After radiation treatments, I decided to go back to school to finally get my Associates Degree in Paralegal Studies (with honors). VESID (don't know if that is only in NY or elsewhere too) and financial aid paid for tuition and books. VESID pays for re-training for the disabled. I had to do an internship for my degree, and was offered a part-time job for the summer with the firm. Social Security disability continued to come in and the small income from the job made things better (had to keep the income limited to continue the SSD). After graduation, I was offered a full time job, but decided to work towards my BA. I also continued to work part-time. In the meantime, my then estranged husband quit his job leaving my 2 children and I without health insurance (yup, in the middle of cancer treatments - very nice guy). What little money I had was pretty much going/gone to my medical care. NY has Child Health Plus which gave the kids coverage, and it was free. Medicare finally kicked in, and I also was able to get Medicaid, but I have spend-down with it. Medicare pays 80% of my medical bills. Then I have to spend $310 each month before Medicaid will pay the rest. It hurts to have to pay that each month, but the alternative is just insane. The transplant alone was nearly a million dollars, and some of my medications cost $7000 for a one month supply (before insurance).

After my first relapse, I had no choice but to leave my job. Loosing that income hurt really bad. Then my ex stopped paying child support for a while. He took me to court asking that all arrears be dismissed. No court in America would do that, but by that time, it was too late. The repo man came and took away my little truck...it was a very sad day!! I actually called them because I knew I wouldn't be able to continue paying - thought it better to be my decision than to have them come and just take the car. Anyway...

I could never quite get a job. I spent so much time in the doctors office/hospital and then the leukemia happened. Just when I thought I might be able to go back to work, the breast cancer came back again. I am now hoping to take a few classes so that eventually I will have my BA, but I am afraid to make any plans.

I have been very lucky in that we live with my parents. It is a big house with a big back yard. The house is whats called a mother/daughter around these parts - aka high ranch. My parents are upstairs, and the kids and I are downstairs. I have a very nice ranch type apartment - very private. 3 bedrooms, 1 bathroom, a living room and eat-in kitchen. If I had to rent, I would have been kicked out by now. My sister bought me a car after loosing my little truck and she paid all my co-pays the first time around.

Cancer has not only wreaked havoc on my body/mind and to my family, but I know for a fact I would have been a lot better off financially without it!! I have reached out and taken any help offered/available through the local churches, hospitals (Christmas gifts and food), cancer societies and state/government programs. If you've read my journey over the years, then you know The American Cancer Society helped with lodging for my family and I while away from home for the bone marrow transplant, reimbursements for pain medication, travel, makeup and wigs. The Leukemia Lymphoma Society helped with travel (parking, gas, flights), and co-pays. A local grass roots program paid for 10 cleaning sessions after the transplant and also sent me a nice check to purchase Christmas gifts one year. Angel Flights flew me to Buffalo for my first consultation and the transplant.

I have spent a lot of time on the internet researching programs, on the phone and filling out forms. But it has all been worth it. Money is very tight and limited, but somehow we still have (good) food on the table, decent clothes, the lights are still on, we all have cell phones, computers and internet service and I am able to get my medications. But...It is the end of the month and I am broke!!! My money comes in on Monday and is mostly gone my Monday (not funny). I make very good use of the coin star machines and return bottles for every nickle I can get...coupons are my friends!!!

If anyone hasn't searched out any of these programs and would like help, please ask!!!

[Hazel Joyce]

Hi, Merridith. I was diagnosed in Nov 2006. Had a lumpectomy in Dec 2006, took 1 week off from work. Started chemo mid-Jan 2007, took a medical leave for 3 months, then another month. Went back to work after starting Taxol/Herceptin (what was I thinking?), gave my notice in June 2007. I haven't worked since then. They offered me a retirement package (age + years of service) and I took a lump sum. I have applied for several jobs recently, but no one is calling for an interview. I am surviving financially because of the generosity of my god-mother. I have health insurance through COBRA through Oct 2008.

[Barbara H.]

I feel as if I have been lucky with my job of teaching third graders. I never took any time off for my inititial treatment; AC with T in 98, but had to take a month in June for my first brain surgery in June 04. Even during that month I was busy writing report cards and went to my students' final performance. After that, at the end of June I had to pack up my classroom. I only took a week for a second brain surgery and then two weeks off for the third brain surgery. I feel very supported by my staff, principal, students, administrators and parents. I arrive at school around seven and don't leave most days before 5:00 or later, except on the day when I have my treatment. I also have work to do in the evening and weekends. I spent most of my December break writing report cards. We are expected to write long narratives. In addition, I take two to three weeks during the end of the summer getting my classroom ready for the school year.

My job is exhausting, but also rewarding. I feel that it gives me a purpose other than my day to day activites. As long as I can continue to make a difference in a child's life and win praise from some of their parents, it makes since for me to continue as long as I can.

In spite of my choice to continue working, I honor and respect those of you who find this impossible or need to work part time. We all experince our work, treatment and life differently. I also had the luxury to take off 11 years years from work when my children were young.

I feel very fortunate to be on the Herceptin MCC DM1 trial, which seems to be working for me. Nevertheless, I dislike the requirement of all those frequent scans , and it is a pain to have to have treatment every week.

Best wishes to everyone,
Barbara H.

[Faith in Him]

Maryann,

You continue to amaze me. What a strong, positive example you are for your children. You have been through so much and yet you find a way to carry on.

Wishing many blessings,
Tonya

[Sheila]

When I was originally diagnosed, I took time off from my job as a Project Nurse for a worldwide construction company. I could not wait to get healthy and return, I loved my job. I did return to work, everything was great, then I took time off to have reconstruction, which also turned into mets and more treatment. To make a long story short, I went on Long Term disability, which I had paid for the whole time I worked. The insurance company insisted I apply for Social Security Disability, which I did, and I was awarded it. As soo as that occured, I began a fight with the insurance company to have them pay the difference between SSD and my LTD, which was 2000.00 a month they would pay....I fought them for over a year, until I just wanted all this to be done with. In hind sight, I should've gotten a lawyer...I went from a 6 figure job to basically low income if I was single.....If you have Cigna Insurance, you have been warned.

[chrisy]

I posted a long response on the "survey" thread...people have different experiences and make different choices. So far I'm still working at the job I love...and hope to continue for a long time!

[Lani]

one I never forgot--

02-04-2006, 10:00 PM #26
Gina
Senior Member

Join Date: Oct 2005
Location: Alexandria, VA
Posts: 187
Just one more thing to consider...
If you are very young when you are dx or have been mostly self -employed and have only been working a few years as I was when I first got BC at the age of 33, your monthy disability amount will be based on some percentage of what you have paid into the social security system. In my case, when I was DX in 1997 and mets in 1999, my employer applied for my social security benefits as they did not want to pay for me. After 3 years of trying, I was eventually approved, but as I had only worked 12 years outside of owning my company, my monthly amount was barely $1,100.00. I am a single mother head of household living in a very high cost of living area (about 10 minutes from Washington, DC) with no other means of support.

I tried and tried to budget to live within this amount, but as my private insurance was about $285 a month and my mortgage was about $1,500 and my co-pays were running easily several hundred a month, not to mention what I paid out in prescriptions and natural remedies, and acupuncture, which at the time was NOT tax deductible as it is now, not to mention food, gas, and essentials, it was very difficult....so, naturally, I had no choice but to keep trying to work. At first, I went back to my very nice Smithsonian job as Artworks and Database Coordinator for the Resident Associate Program...but try as I might, given the rigid 9 to 5 Monday through Friday structure of the quasi-governmental institution, it was impossible. Plus, I no longer had the energy to organize and attend the late night art receptions, or do the often required travel for training or chaperone the fabulous Smithsonian travel programs or monitor the Campus on the Mall evening classes, which though NOT absolutely written into the job description, were nevertheless expected "DUTIES AS ASSIGNED". Plus, the stress of the database mining part of the job which required me to interface with every division of the institution was simply too much to juggle in between CT and muga scans, herceptin infusions, blood draws, and doc and onc appointments, etc....

Fortunately or unfortunately, I had also co- owned a rather successful S corp-a major exterior construction company in the DC Metro area-- before my dx with my business partner (who later died of cancer mets to liver also), and even though my illness and his death bankrupted the Corporation, I decided, since I had my license and knew something of owning one's own company, I would set up myself as a sole proprietor to supplement the $1,100 of social security disability benefits because-- very quickly -- it became PAINFULLY evident that there would be few companies that would want to hire an employee who would, by nature of her illness, be absent a good bit of the time. Remember these are the late 90's and early 2000--flex time was NOT nearly as widespread as it is now.

This worked well for a few years until one year, I earned about $250 over the strictly enforced MAXIMUM earnings with disability limit which that year was about $8,000, I think, so I was fined over $33,000..and essentially had to pay back every cent of social security that I had received the two and half or so years prior. You can not imagine how shocked I was. I tried to explain that I was a single mother with no other means to support me and my small son with no family in the area--that I was head of household, living in a very expensive city. They knew I had a terminal illness, but they informed me that I had basically been "terminally ill too long" and although I was still, BY LAW, disabled under the terminally ill clause, I would have to return the money or go to jail...this is no joke. The social security representative I met with was very serious. I was so sick at the time, my mets had come back again (I think that was about the 4th of 7 bouts)...anyway, I was crying and crying. I went into shock. I could not believe that they legally could do this.

As at that time, I was pretty poor and I barely had enough money to cover the essentials and didn't have money for a really good lawyer to take up the appeal process, which though long and dreary, probably could have obtained me the hallowed "waiver", I tried going with the supposedly "FREE" disability attorneys but no one seemed terribly interested in my case, and I am just that type of overly PROUD person who SERIOUSLY HATES.. above ALL THINGS... to ask for any kind of help--even when I really need it...so I just accepted the "verdict" and signed the papers shoved at me then and there, admittedly under undue distress....sighhhh...and wondered out to my car completely dazed and cried for hours before I could even drive out of the parking lot.

It has taken me over two years to pay it all back. If I live until the end of February of this year, I won't owe them anything any more and I truly HOPE and PRAY that no matter what happens to me and my son, I will not have to apply again for any reason, prefering seriously, to just die...I am not kidding--so painful was my experience with the whole ordeal that I found her-2 neu cancer to be easier to deal with than the SS disability system. I kid you not. Hopefully, things are greatly improved these days and that all of you who are applying will reap only the benefits and suffer none of the pitfalls.

But another word of caution, keep in mind that herceptin may soon be classed as a bio-technical "invention" which in many cases under Social Disability law "re-enables" a person for work of some type--even though admitedly it may not be the level or pay scale of work you used to do, and unless, as Steph very accurately points out, you are considered stage 4 under the "terminally ill" clause, in many cases, you may --in the very near future-- no longer be able to get approved, merely by being her-2 positive. So for those of you BRAVE souls who even after reading this still want to apply and should, especially if you have worked enough years to make the monthly amount significant, get those applicatations in ASAP so you can slip in UNDER the wire.

Also, I was "LUCKY" enough to have the insurance some one mentioned above with the "fine print" that once you were even just approved for medicare, the private insurer would automatically switch from your primary insurer to your secondary insurer, so in 2004, Blue Cross Blue Shield over -turned $96,000 of payments to 25 of my providers over a 3- year period retroactive back to 2001--in other words, bills that had already been paid with co-pays by me and funds from Blue Cross years back...were suddenly "UNPAID" and it became MY responsability (ill though I was) to re-process the paperwork back through Medicare and it has taken me nearly 2 years to force Medicare to REPAY all $96,000 of them. Oh, and as for my co-pays...well, that money was never returned to me by 24 providers--although Medicare did eventually pay them all except for one -- and one honest clerk in one provider's office did refund some to me. There is still one surgery outstanding for around $3, 500 which get this..smile...both MEDICARE and Blue Cross are denying for guess what...smile.."UNTIMELY FILING" hee hee heeee when it was Blue Cross themselves which took the money back retroactively to 2001 in the first place...it is REALLY good that I have always been blessed with a TREMENDOUS sense of humor....otherwise, the paperwork alone that I have lived through would have killed me faster than the her-2. But laugh as I try to, the provider that has not been paid is unfortunately my OB-GYN, and until some agreement on payment with him can be provided by either Blue Cross or Medicare --we are appealing for the 6th time to both agencies, his office is unwilling to "see me". I am at this point about a year over due for my Pap smear and mamagram and given my history of Pelvic mets, desperately would benefit from a sonogram, but because I am with an HMO, he is the designated doctor who must write the scripts and perform the Pap. Yes, having her-2 and being less that RICH...is not fun...smile....

When faced with the option of wasting the little energy I have left litigating the social security system, getting my congressman or Access Watch involved, etc. though I have genuinely considered it MANY TIMES, I decided, FOR ME, it would simply be better to just put any energy I have left over towards finding what the first and underlying cause of her-2 over-expression is and snip this whole problem in the bud, and I have been HAPPILY "employed" at that task in my free time while continuing to run my company as my "DAY JOB" all these years since and guess what? Even though the ONE thing I would agree with Social Security on is that I have indeed been "terminally" ill for WAY too long, I still am....here...smile.

Godspeed to all,
Gina

Gina--I hope you did not mind my quoting your post--I think it says it all!

[madubois63]

Lani - Thanks for posting Gina's earlier post. It was very interesting to read (but very sad too). I really think Gina got screwed and should have discussed this with an attorney (even after the fact).

To everyone else, Gina's experience is not the norm and it should not deter you from applying and getting the benefits that you have paid for and deserve. Not everyone needs an attorney to apply for benefits and not everyone gets denied immediately. Read the information on the website - google Social Security Disability benefits. Just like your disease, research and know what you are doing!!

If you read my earlier post, I did mention keeping my part-time income limited. I, like Gina, learned that one the hard way. One day, out of the blue, I got a letter requesting I repay several months of benefits because I made too much at my part-time job (yeah - like I was dripping in diamonds). I did not use an attorney, but filed forms on my own. I was able to have the decision reversed and did not have to pay the few thousand dollars that they wanted because of financial hardship.

Social Security does have programs that help you re-enter the workforce. You have to discuss this with someone and set up a plan. If you go back to work, work for a while, and then have an unfortunate relapse, benefits can be reactivated immediately so that there is no lapse of income.

Social Security does send forms out every few years to check on eligibility. I believe it's 7 years, but I could be wrong. I don't really know what makes one persons experience easier than another's. My experience is that it isn't enough to live on and it can be confusing and frustrating, but it is better than nothing...

[LOPSIDED]

I Was Working At A Credit Union When Diagnosed. I Continued To Work Part-time And Received Short Term Disability That Paid 60% Percent Of My Lost Income. The Disability Company Sent Me Mountains Of Paper-work To Fill Out. They Called Me Every 2 To 3 Weeks Urging Me To Work More Hours. They Made Me Fill Like A Criminal. After A Year And Half Of Working Part-time, I Quit. My Job Had Become Stressful And I Just Couldn't Take It Anymore. About A Month Later I Had A Reoccurence And The Disability Company Told Me I Needed To Apply For Social Security Disability. I Would Have To Be Out Of Work 6 Months Before I Could Receive Benefits But I Could Go Ahead And File The Paperwork. I Was Approved Very Quickly (about 6 Weeks). The Disability Company Thru My Work Only Had To Pay Me A Small Amount After Getting Approved For Social Security Disability, But They Continued To Call Constantly Telling Me I Needed To Go Back To Work Since My Doctor Did Not Restrict Me From Working. At This Point, I Had Recovered From My Second Reoccurence And Was Only Receiving A Faslodex Shot For A Period Of 9 Months. I Went On Many Interviews, I Had 10 Years Banking Experience, But No One Would Hire Me. During This Time, The Disability Company Thru My Former Employer Cancelled My Payment. Two Months Later I Had A Third Reoccuence, But Frankly I'm Happy Not To Deal With The Disability Company. I Only Receive Social Security Disability, Which Is Less Than A 1000.00 A Month. My Cobra Medical Insurance Takes A Big Hunk Of That Money. I Won't Qualify For Medicare Until The Middle Of 2009, So Somehow I Have To Keep My Cobra Insurance Going. I Am Living Off Of My 401k Money, Savings & Credit Cards. Sometimes It Seems As Though I Can't Afford Live. I Really Have No Family To Help Support Me. I Know Sometime In The Future My Options Will Run Out, Don't Know What I Will Do. I Have Already Told My Doctor I Can't Afford Tykerb, Unless They Help Me I Will Have To Stop Treatment. In the past, I was always the type who saved money, paid bills early. Now I'm just a collection problem.

[Joe]

Christine was awarded a Master of Science degree in Public Healh by Loma Linda University in 1971 and was a health educator at Columbus Hospital in New Jersey when we were married and enjoyed a substantial income
She became pregant with our first daughter in 1984, we made a decision that she would be a stay at home Mom and would return to the work force after Debra graduated High Scool. Well Danielle came along 2 years later.

Danielle graduated High School in 2004, but there was no way of Christine reentering the work force due to the ravages of chemo and whole brain radiation.

This support group is her full time job:
Current median salary: Health Educator = $100,000 +
The friends that we have made and the lives that we have touched through HER2 Support = Priceless

For anyone with insurance, disability, job discrimination or legal problems we HIGHLY recommend The Cancer Legal Resource Center.
IT IS FREE:
http://www.disabilityrightslegalcent...lresource.cfm/




Regards
Joe

[madubois63]

Lopsided - Please check out http://www.dcf.state.fl.us/ess/ to see if you qualify for Medicaid. Once Medicare kicks in, Medicaid can be your secondary to help cover the 20% that Medicare does not pay. I am sure it has to be cheaper than what you are paying now. GlaxcolineSmith has a patient assistance program that covers the cost of Tykerb. It really annoys me that some doctors don't always tell their patients that there is help out there. Also, Walmart has $4 generic prescriptions. Check out this link to see if your prescriptions are part of the plan. Many of my anti-rejection drugs are not covered, but there are a lot of common drugs available. http://www.walmartfacts.com/articles/5314.aspx
Look to see who makes your prescriptions, Search the company out. Many of the drug companies have prescription assistance plans. Contact CancerCare and the American Cancer Society. They also have financial assistance programs that offer small grants ($300 - $1500 per year) to help cover the costs of travel/lodging to and from treatments, pain medications and child care during treatments. Google "Prescription Assistance." There are tons of programs out there that will help pay co-pays .

Everyone that comes to this board has access to a computer and should be able to navigate the internet enough to Google HELP for what ever problem you might have. Believe me, IT IS OUT THERE - you just have to look. Call your Town Hall or Rotary Club. There are many businesses in the communities that offer free or reduced services to cancer patients. Ask about cancer coalitions in your area. One group paid for a professional cleaning service to clean my house 10 times. Very nice!!! There are scholarships just for children of cancer patients (living or not). There are free hats, scaves and wigs available (http://www.heavenlyhats.com/), free make-up (http://lookgoodfeelbetter.com/), free and reduced cost massages (call your local collages and massage schools), reduced cost dental and chiropractic services (also contact your local colleges), reduced cost haircuts, manicures and pedicures (call local beauty schools - BUT DON'T LET THEM CUT YOUR CUTICLES).

If you call/contact one company a day/week, before long your financial life will be so much easier (I am not promising "grand," but easier). I've got it down to a science. I know when I have to apply for what (love my calendar reminder). Reminds me...I have paperwork to do today...ugh! But I got to do it.

I had a free facial, massage and manicure last week at a salon near me that closes shop to the public one day per month. They offer free services to cancer patients all day long. How great is that?? A gym near me is offering a 6 month free membership to cancer patients and my cancer center offers free yoga classes Monday nights. There are free art, cooking and exercise classes given at some of the larger cancer centers and community centers. And don't forget to check out your own library. My friends and I go to the library for a free movie at least twice a month.

I hope this helps someone...

[Barbara H.]

Hi,
As I stated earlier, I also elected to take a number of years off from work when my children were young. Whole brain radiation was also recommended for me in 2004, but I elected not to take it at that time because I only had one brain tumor. However, if I ever need it I would have to stop working.

As I reread all these posts it occurred to me that it might be helpful for the those still in the race for the US President to read these posts. Health care is a big issue this year.

It is sad enough to read the struggle we all have with this cancer. The additional burden these posts present is so disheartening. As more people continue to survive cancer, I hope that some of the issues in these posts can be improved.

Here is another example to show how tough issues can be when living with stage 4 cancer. When I was diagnosed with stage 4 (lungs, liver, skin, and brain) in 2004, my first concern was for my 21 year old daughter who has autism. We were able to find her an exceptional adult program, but DMR absolutely refuses to grant us any help for adult housing because we are deemed capable of taking care of her. That could possibly change if I were close to death. However, if my husband were retired, she would also probably not receive help. It is just too much for us to afford the entire cost of outside living arrangements for her, plus the supervision she would require. As a result, there are many people living in their in their 70s, 80s, and 90s still caring for their adult children with special needs.

Through out the years, I have seen many positive changes occur for the education for children with disabilities. Unfortunately, much more needs to be done for those who turn 22 and are unable to fully care for themselves. It would be much better for my daughter to adapt to living in a residential setting as a young adult then to have to deal with my demise and then be forced to take that step at the same time.

Although these comments do not have to do with health care, they reflect how cancer adds an additional burden to all the issues we need to face in life.

Best regards,
Barbara H.

[Merridith]

Wow! Are these stories ever amazing. Especially Gina's. It made my blood boil. Penalized for earning $250 too much??????? It sounds unbelievable.

But one thing seems apparent to me. Besides support for people recovering for cancer - there should be "encouragement" for employers to keep on their employees. Maybe in the form of tax breaks or something. Because it is clearly a burden to the bottom line for some companies to keep an ill employee around on a flexible basis.

Merridith