Unemployment after chemotherapy

In May 2007, two weeks prior to my breast cancer diagnosis, I was laid off from my full time job. That is the last full time job I have worked. I was a rocket scientist and decided I could job hunt between surgeries and while going through chemo. I ended up returning to a part time job I had held before - lucky me, they had an opening.

Now it turns out I am not alone. New research (because we always need new research) shows that women who undergo chemotherapy for breast cancer are much more likely to become unemployed. (They didn't tell us about that little factoid when we were making treatment decisions.)

"Dr. Reshma Jagsi of the University of Michigan Health System and her colleagues studied 2,290 women in the Los Angeles and Detroit areas diagnosed with breast cancer between 2005 and 2007. They spoke with more than 1,500 of them four years later.

About 1,000 of the women were under 65 and interviewed both times, and of them, 76 percent had paid jobs before they were diagnosed.

The women who got chemo were less likely to still be working four years later, they reported in the journal Cancer. The researchers found that 38 percent of the women who got chemo were jobless four years later, versus 27 percent of the women who skipped chemo..."

"The findings don’t surprise breast cancer experts. “For the vast majority of patients, side effects are manageable and they can improve after, but some patients don’t feel fully functional for the long term,” said Dr. Jennifer Litton, a breast oncologist at MD Anderson Cancer Center in Houston."

In my case, I worked two part time jobs for a total of about 30 hours/week for a few years after chemo and radiation ended. Since my rheumatoid and fibromyalgia diagnoses I have cut back to one part time job for 15-18 hours/week. Sometimes that is even difficult.

Even with out RA and fibromyalgia, I am not sure I would be able to do my previous jobs again. As marketing director for a medium sized non profit, I was multi-tasking, putting out fires, and jumping through hoops as I hands on managed and over saw an on-and offline marketing plan. My brain is fried. I get tired. My chemobrain kicks in and I have no memory of what I did 10 minutes ago. I don't trust myself to do as much as I used to.

Now I do marketing for a small family owned business. When I took the job, we discussed the fact that it was clearly a step back for me career wise. I told them my life had changed in that I had gotten married and was looking for a job where I wasn't traveling, wasn't managing a bunch of people, and could go to work and go home. That has become even more real. 

Now I leave myself notes all over the place on what needs to be done because there is no way I could remember it all. I have flexibility to go to doctor appointments and for the days when I am too tired. I can manage my schedule around my health issues. And I don't have to worry that I might overextend myself because I can handle my little job.

This new research shows me that I am not alone and there are many other women out there who don't work or work in lesser jobs because of chemotherapy.

I used to be jealous

Back in 2007 when I had radiation for my breast cancer. I had to undergo the traditional radiation treatment which meant 37 visits spread over 7 weeks - five days a week that lasted FOREVER. I knew people online who were getting the short version and getting radiation for five days - brachytherapy - with two visits a day. I was jealous because I was (and still am) sick of going to the (damn) hospital.

I had asked at the time and was told by my radiation oncologist that they did not offer the shorter option nor did most hospitals in Boston at that time. A few years later I attended a conference where I learned they were starting to offer the shorter option as well as expanding their other services.

Now new research on women over sixty who had brachytherapy after a lumpectomy are more likely to have a mastectomy five years later. They were more likely to have treatment complications that resulted in the mastectomies.

ASTRO is considering new guidelines for who would most benefit from brachytherapy and cautionary and unsuitable criteria. The number one criteria seems to be that it is best for women over sixty.

Since I do not fit their criteria I am glad I did not get brachytherapy as it could have increased risk for mastectomy. I am not jealous any more.

Being prepared for the realities of chemotherapy

I have always thought being proactive was a good thing. Planning ahead is good, not bad. I try to do this whenever possible - occasionally my husband has accused me of hoarding because I stock up when things are on sale.

Sometimes this is not possible. An example of this is when a cancer diagnosis turns your life upside down. You hop on the cancer roller coaster and are sent to surgeons, medical oncologists, radiation oncologists, and more. You are told it will be stressful but nothing prepares you for the realities of chemo.

In chemo, you go from feeling normal to feeling like you are run over but a bus and a herd of elephants, several times. You lose your hear, your brain, your fingernails, your appetite, and sometimes question your own sanity. You go from being able to get through your day to day life to gasping for breath as you walk up a short flight of stairs. Go read about Jamil and what chemo did to him - going from triathlete to chemo patient.

Its like there is this big secret world of the chemotherapy patient. Nurses and doctors can't tell you exactly what it will be like because every cancer is different and every patient is different. And because as medical professionals and HIPAA, they can't tell you all the nitty gritty details. Its just not possible for them.

But along comes Chemoflage where they help prepare women for chemotherapy - a bit of proactivity. Its a standalone educational program for women undergoing chemotherapy according to their website.

Unfortunately this is based in Atlanta but I would love to see it nationally. This is the kind of program that would help any person going through chemotherapy. Being a bit more prepared for chemotherapy would be a huge asset.

It is possible that things can go in the right direction

In 2007, when I was in chemo, nausea was my constant friend. It didn't stop me from eating, in fact I did gain weight during chemo. It disappeared after chemo.

A few weeks ago, my rheumatologist put me on sulfasalazine to help with my rheumatoid arthritis. Its just like chemo again in that it makes me feel nauseous all over again. I have felt nauseous again and again since I started taking a few weeks ago. This nausea made me actually do some research on it even though I did listen to my doctor who said nausea could happen.

So I looked it up on drugs.com and there it is under side effects that may go

"Some sulfasalazine side effects may not need any medical attention. As your body gets used to the medicine these side effects may disappear. Your health care professional may be able to help you prevent or reduce these side effects, but do check with them if any of the following side effects continue, or if you are concerned about them:

More common

• Abdominal or stomach pain or upset
• decreased weight

Less common

• Welts

Less common or rare

• Discoloration of the skin or urine
• hair loss or thinning of the hair
• swelling or inflammation of the mouth"

Did you see it? The second bullet in the first series of bullets. Decreased weight. How sneaky? How cool? Every other medication has caused weight gain. This one causes weight loss. Now I am happy.

They did it again

I hate it when this happens. A medical standard protocol is decided to be not good and may cause long term harm. I find it frustrating. I go to the doctor and get the best care I can. I do my part to cooperate and take my pills or whatever is decided is best.

Then they change their minds.

For many years, TSH (Thyroid Stimulating Hormone) was suppressed as much as possible - to barely traceable levels - maybe 0.3 or 0.4 whatever thingys they measure by. The theory was to keep it as low as possible to prevent possible recurrence of thyroid cancer.

Now they say keeping it that low doesn't provide additional benefit in preventing recurrence but can also contribute to osteoporosis in patients.

"Wang concluded that there's no recurrence benefit with TSH suppression, but an increased risk of harm, particularly for osteoporosis in women, and care should be taken with regard to TSH suppression in these patients who've had thyroidectomy for low-risk disease.

Ronald Koenig, MD, PhD, of the University of Michigan in Ann Arbor, who was not involved in the study, said the findings "raise the question of whether TSH suppression is in fact necessary."

"More data are needed from a larger series of patients to inform practice guidelines, but these findings are potentially impactful since they highlight an area where revision might be indicated," Koenig told MedPage Today.

While I do have a strong family history of osteoporosis, I was diagnosed with osteopenia, the  precursor to osteoporosis in my late 40's which is very early). Right now it is stable but the usual only trend is downward.

Could this be linked to my suppressed TSH levels for the past 32 years? There is no way to tell at this point. But thanks for making the change an making me doubt my medical treatment.

Weight gain is a side effect of cancer.

Weight gain is the side effect of everything these days - even breathing. I am on too many medications which have a side effect of weight gain.... So here I sit in my slightly tight clothes two sizes larger than I used to wear in dire need of a drastic deflabbification project.

"People with certain cancers – such as breast, prostate and colon cancer – are more likely to gain weight during treatment due to the therapies used to combat their disease. Hormone therapy, some chemotherapy regimens and medications such as steroids  all can cause weight gain, as well as water retention."

THEY  DIDN'T TELL ME THIS WHEN I WAS DIAGNOSED! Well there was a lot they didn't tell me - or that I didn't want to hear. But it is much harder to lose weight after breast cancer while still on hormone therapy.

And I am also on all sorts of other medications for my other ailments that might cause weight gain. I do go to the gym three times a week so its not as if I just sit around all the time.

And of course we need to remember:

"Some studies of cancer patients have linked obesity to an increased risk of recurrence and death in several common cancers, including breast, colorectal and prostate cancer. The California Teachers Study, led by City of Hope’s Leslie Berstein, showed that being obese was associated with a significant increase of dying from breast cancer for many women." More on this here.


So your treatment makes you fat and your fatness makes you more likely to die from it. So obviously something is wrong with the treatment. Does anyone see any irony with this?

The real question is if I went off the medications that might cause weight gain, would the weight magically disappear? I think that answer is a big fat no. Damn.

It is possible that things can go in the right direction

In 2007, when I was in chemo, nausea was my constant friend. It didn't stop me from eating, in fact I did gain weight during chemo. It disappeared after chemo.

A few weeks ago, my rheumatologist put me on sulfasalazine to help with my rheumatoid arthritis. Its just like chemo again in that it makes me feel nauseous all over again. I have felt nauseous again and again since I started taking a few weeks ago. This nausea made me actually do some research on it even though I did listen to my doctor who said nausea could happen.

So I looked it up on drugs.com and there it is under side effects that may go

"Some sulfasalazine side effects may not need any medical attention. As your body gets used to the medicine these side effects may disappear. Your health care professional may be able to help you prevent or reduce these side effects, but do check with them if any of the following side effects continue, or if you are concerned about them:

More common

• Abdominal or stomach pain or upset
• decreased weight

Less common

• Welts

Less common or rare

• Discoloration of the skin or urine
• hair loss or thinning of the hair
• swelling or inflammation of the mouth"

Did you see it? The second bullet in the first series of bullets. Decreased weight. How sneaky? How cool? Every other medication has caused weight gain. This one causes weight loss. Now I am happy.

Unemployment after chemotherapy

In May 2007, two weeks prior to my breast cancer diagnosis, I was laid off from my full time job. That is the last full time job I have worked. I was a rocket scientist and decided I could job hunt between surgeries and while going through chemo. I ended up returning to a part time job I had held before - lucky me, they had an opening.

Now it turns out I am not alone. New research (because we always need new research) shows that women who undergo chemotherapy for breast cancer are much more likely to become unemployed. (They didn't tell us about that little factoid when we were making treatment decisions.)

"Dr. Reshma Jagsi of the University of Michigan Health System and her colleagues studied 2,290 women in the Los Angeles and Detroit areas diagnosed with breast cancer between 2005 and 2007. They spoke with more than 1,500 of them four years later.

About 1,000 of the women were under 65 and interviewed both times, and of them, 76 percent had paid jobs before they were diagnosed.

The women who got chemo were less likely to still be working four years later, they reported in the journal Cancer. The researchers found that 38 percent of the women who got chemo were jobless four years later, versus 27 percent of the women who skipped chemo..."

"The findings don’t surprise breast cancer experts. “For the vast majority of patients, side effects are manageable and they can improve after, but some patients don’t feel fully functional for the long term,” said Dr. Jennifer Litton, a breast oncologist at MD Anderson Cancer Center in Houston."

In my case, I worked two part time jobs for a total of about 30 hours/week for a few years after chemo and radiation ended. Since my rheumatoid and fibromyalgia diagnoses I have cut back to one part time job for 15-18 hours/week. Sometimes that is even difficult.

Even with out RA and fibromyalgia, I am not sure I would be able to do my previous jobs again. As marketing director for a medium sized non profit, I was multi-tasking, putting out fires, and jumping through hoops as I hands on managed and over saw an on-and offline marketing plan. My brain is fried. I get tired. My chemobrain kicks in and I have no memory of what I did 10 minutes ago. I don't trust myself to do as much as I used to.

Now I do marketing for a small family owned business. When I took the job, we discussed the fact that it was clearly a step back for me career wise. I told them my life had changed in that I had gotten married and was looking for a job where I wasn't traveling, wasn't managing a bunch of people, and could go to work and go home. That has become even more real. 

Now I leave myself notes all over the place on what needs to be done because there is no way I could remember it all. I have flexibility to go to doctor appointments and for the days when I am too tired. I can manage my schedule around my health issues. And I don't have to worry that I might overextend myself because I can handle my little job.

This new research shows me that I am not alone and there are many other women out there who don't work or work in lesser jobs because of chemotherapy.

After cancer treatment is just as important

You get a cancer diagnosis and then they tell you how they want to slash, poison and burn your body to get rid of the cancer. But they rarely discuss the issues of life with your dismantled body after treatment.

I had no idea what I was getting into when at 19 I had my thyroid removed. I didn't understand for the rest of my life, I would need to take a little bottle of pills with me. Or that after breast cancer treatment, I would have surgery scars embossed into my skin thanks to radiation shortly after. Never mind neuropathy and chemo brain. And we can't forget our friends PTSD, anxiety, and depression, among others.

So when you are preparing for your cancer treatment, you also need to take the time to think about the long term and late effects, as they are known. These can include secondary cancers, infertility, and heart, bone and lung problems. Yeah, right. The first response to 'you have cancer' is something along the lines of 'get it out of me!'. No one wants to wait and weigh the benefits of do we get rid of the cancer or do we worry about the long term effects, if the first cancer doesn't kill you in the meantime?

That's not happening. Now that we know that patients can live and thrive for decades after treatment, perhaps we need cancer treatments which are do not leave long lasting physical scars. I know now there are oral cancer treatments where daily pills can remove the cancer but also bring strong side effects. They are a step in the right direction but we aren't there yet. Life after cancer is just as important as life before cancer. We want to be able to enjoy it too.

More research is needed please.

I used to be jealous

Back in 2007 when I had radiation for my breast cancer. I had to undergo the traditional radiation treatment which meant 37 visits spread over 7 weeks - five days a week that lasted FOREVER. I knew people online who were getting the short version and getting radiation for five days - brachytherapy - with two visits a day. I was jealous because I was (and still am) sick of going to the (damn) hospital.

I had asked at the time and was told by my radiation oncologist that they did not offer the shorter option nor did most hospitals in Boston at that time. A few years later I attended a conference where I learned they were starting to offer the shorter option as well as expanding their other services.

Now new research on women over sixty who had brachytherapy after a lumpectomy are more likely to have a mastectomy five years later. They were more likely to have treatment complications that resulted in the mastectomies.

ASTRO is considering new guidelines for who would most benefit from brachytherapy and cautionary and unsuitable criteria. The number one criteria seems to be that it is best for women over sixty.

Since I do not fit their criteria I am glad I did not get brachytherapy as it could have increased risk for mastectomy. I am not jealous any more.

Being prepared for the realities of chemotherapy

I have always thought being proactive was a good thing. Planning ahead is good, not bad. I try to do this whenever possible - occasionally my husband has accused me of hoarding because I stock up when things are on sale.

Sometimes this is not possible. An example of this is when a cancer diagnosis turns your life upside down. You hop on the cancer roller coaster and are sent to surgeons, medical oncologists, radiation oncologists, and more. You are told it will be stressful but nothing prepares you for the realities of chemo.

In chemo, you go from feeling normal to feeling like you are run over but a bus and a herd of elephants, several times. You lose your hear, your brain, your fingernails, your appetite, and sometimes question your own sanity. You go from being able to get through your day to day life to gasping for breath as you walk up a short flight of stairs. Go read about Jamil and what chemo did to him - going from triathlete to chemo patient.

Its like there is this big secret world of the chemotherapy patient. Nurses and doctors can't tell you exactly what it will be like because every cancer is different and every patient is different. And because as medical professionals and HIPAA, they can't tell you all the nitty gritty details. Its just not possible for them.

But along comes Chemoflage where they help prepare women for chemotherapy - a bit of proactivity. Its a standalone educational program for women undergoing chemotherapy according to their website.

Unfortunately this is based in Atlanta but I would love to see it nationally. This is the kind of program that would help any person going through chemotherapy. Being a bit more prepared for chemotherapy would be a huge asset.

What RA does

As I approach my one year anniversary of being diagnosed with rheumatoid arthritis and fibromyalgia (because I didn't have enough ailments prior to then), I can reflect back. Although my mother has had RA for more than 20 years and I thought I was fairly educated on the subject, its different when you are the one living with the disease.

To be fair, I will say I had long since moved out of my parent's house when my mother was diagnosed so I was exposed to less of the day to day issues. For many of those years, I was busy with a career which involved lots of travel and pressures. But now that it is affecting me, I find I have learned a lot more.

I do not know what the standard protocols were for treating RA when she was diagnosed in 1989, but now the protocol is to treat it strongly and quickly to prevent many of the side effects and degeneration that accompanies the disease.

I was promptly put on prednisone for the short term, as a quick acting treatment, and plaquenile, as a long term treatment, and found out I was allergic to both. Then I was switched to methotrexate oral, dose upped, and finally switched to injections in the spring. That was until my compromised immune system caused my husband's mild cold to give me a double ear infection and put me out of circulation for two weeks while I recovered. I had to go off methotrexate to treat my ear infections with antibiotics.

Finally, I have been back on weekly injections for about six weeks and am starting to feel normal, or as normal as I ever will be, again.

Over the year, I have learned all sorts of fun things about RA and how it affects the body:

• This is how RA affects the rest of your body
• It can also cause hoarseness and other laryngeal symptoms.
• RA can have a significant impact on work and relationships.
• Its not just the disease but the treatments that can cause problems with your skin - ones I have include Raynaud's syndrome, bruising, red dots, and increase sun sensitivity.
• My favorite is how RA affects both your hands and feet.

And the treatment for fibromyalgia? Its just treating the pain so we are trying to manage that. But now I have both fibro fog and chemobrain so I can claim brainlessness regularly. I have problems remembering words and names these days and am constantly misnaming things and people.

What do I have to look forward to with RA and fibro? I have blood tests every eight weeks to monitor my blood levels, particularly liver function as methotrexate is hard on your liver. I bruise very easily and every cut, scrape, or bruise takes forever to heal.

In the meantime, as life gives me lemons I keep on working on that lemonade.