Working and Treatment

[Hopeful]

I have been trying to digest the multitude of information included in the abstracts on the San Antonio website. One, No. 5080, written in easy to understand English, really hit home with me. The title is "Trade-offs between treatment and work: how insurance effects treatment completion." The authors queried patients about their treatment compliance, to see if there was a difference among patients with their own insurance vs. patients covered under a spouse's policy. Surprise, surprise, the more compliant patients had coverage through their spouse. The conclusion from the survey, recongnizing the realities of the working world, is, IMO, long overdue:

"Physicians choose the best course of treatment under the assumption that patients can dedicate themselves exclusively to treatment and recovery. It is well known that patient compliance affects clinical response to any given treatment plan. Our study indicates that job demands and the need for health insurance may negatively impact this compliance, and physicians may need to discuss this issue with patients during treatment planning. Physicians may then need to seek alternative treatments that reduce interference with the patient's work and therefore, increase treatment compliance and efficacy."

Amen!

Hopeful

[Heart Sutra]

Yup, no surprise.

Once upon a time I remember a physician who kept night hours... because he realized his patients worked for a living! Crazy, huh? He was a good man. I believe the AMA caught him and after a good fight had him tarred and feathered.

We've had physicians change appointment times 3 times in one day. We're not shy, and we were clear in our opinion of their need for a reality check. I think they were genuinely suprised to hear that they weren't the only ones in the world with a schedule. We've found better since then.

Being excessively wealthy might be the way to go, less scheduling problems that way... we haven't tried that yet. We'll let you know if it works.


---Kevin and Sue---

[Hopeful]

Kevin & Sue,

One of the things I found totally frustrating back when I was getting first, second and third opinons on treatment is that the people scheduling appointments would tell me to be there at 1:00 p.m. when the actual appointment was not until 1:30, and the doctor was still late! Their excuse was that they wanted people there to do paperwork, which never took more than 5 minutes. I was ducking out of work on the sly to get to these appointments (At that point, I had only been in my job for 6 months, had very limited sick time, and no right to FMLA time), trying to work them in before work, during lunch hour and after hours. When I explain that I have to work for a living, I would get some eyerolling. I have become very demanding about scheduling appointments and treatments that work for ME - not them. When they tell me "your health should come first," I explain that without health insurance, I get no treatment, and without a job, I have no health insurance. What I liked about this poster was the fact that it brought home to physicians the message that compliance is contingent upon availability, and availability isn't always at the doctor's convenience.

Good luck with that excessively wealthy thing!

Hopeful

[AlaskaAngel]

As a HER2+++, I look forward to the day when the triple negatives are lucky enough to have as many possibilities for treatment as HER2's do.

When reading this thread, I wonder what it will take as progress happens with each type of bc for people to truly consider the possibility that the most difficult and toxic treatments (taking the "medicine that tastes the worst", or "throwing the book at it") may not be the most intelligent or most heroic thing to do.

Although it will take more time to truly verify which treatments work best, I hope this study helps physicians and patients to also see how much difference it can make in our lives when milder therapies are legitimately used -- especially considering that chemotherapy "works" in a very limited number of patients -- as I understand it, in less than 20%.

AlaskaAngel

[Hopeful]

AlaskaAngel,

Chemotherapy (which I declined) was not the only issue - I had to fight to get an acceptable schedule for radiotherapy, that was not middle of the day, but before I had to go to my job. Many, if not most, of the patients receiving Rx at the major metropolitan center where I was treated (i.e., four linear accelerators running 8 hours a day) were NOT working, and had greater flexibility for scheduling. Wouldn't it make sense to reserve the early and end of day appointments for those of us who need special times? I told the techinicians I felt like I had a paper route for 7 weeks: up at 5:30 a.m. to do a "second job" with it's own commute before my "real" job. To top it off, the doctor and her resident seemed surprised that I worked throughout the treatment, which suprised ME.

Hopeful

[AlaskaAngel]

I sympathize. For me and many of those in rural areas, the weeks of daily treatment were a huge barrier to overcome. At the time I tried to find any place where I could manage to live and get brachytherapy (which requires a week or two of appointments) instead. But at that time it was only happening on the east coast and I could not go there. For me as a self-employed contractor, and for many others out in the boonies, it can be extremely detrimental in terms of even staying employed. Radiation treatment was not available within hundreds of miles from me and my residence and the businesses I contract with. Not all businesses can find someone that easily who is willing to temporarily replace an employee who literally has to move someplace else to get radiation where they can't commute to their job.

I was able to redesign my situation through technological advances that came along at the right time for me, and I became a "computer commuter". Thankfully the people I contract with had faith in me and my ability and willingness to work straight through treatment, which I did. Many times it meant being up all night because the fatigue of radiation sometimes meant I worked slower. And because I was able to be flexible with my work hours and the time of treatment I always booked at times that most working people could not, to try to help.

The rads centers need help with scheduling. Another suggestion would be to try to attend whatever support group the center or medical facility offers, to try to find others who are getting rads and are willing to "trade times" -- or even if the group has any kind of newsletter, as a place to post your need so that bc patients can step in and help one another.

AlaskaAngel

[Heart Sutra]

"When reading this thread, I wonder what it will take as progress happens with each type of bc for people to truly consider the possibility that the most difficult and toxic treatments (taking the "medicine that tastes the worst", or "throwing the book at it") may not be the most intelligent or most heroic thing to do. "

AlaskaAngel,
The chemo statistics for success are worse the older the study, and the source of the study has much to do with it. (note that promoters of alternative therapies conveniently find lower success rates for chemo(gathered from spur of the moment net search))
What it will take for people to consider other paths than "the medicine that tastes worse" is a medicine that works better. Lots of claims to this, but nothing materializing. Heroics have little, if anything, at all to play here. Progress is slow, too slow, but until a better way comes along...

---Kevin and Sue---

[Hopeful]

I think the real answer to the problem is on the horizon, i.e., personally tailored treatment. We are not statistics, we are people. Everyone's personal biology is truly unique. When we get the particulars of this approach worked out, it may be that the best treatment for one individual is time consuming and expensive, while the best treatment for another is inexpensive, quick and easy. Knowing that the treatment you are receiving is the optimum treatment for you based on your personal biology is what it would take to convince me (and others, I am sure) to accept any particularly toxic treatment. Until that time comes, we are dealing with a medical problem, for which, in some instances, has had its treatment seemingly turned into an industry (I have had doctor friends agree with me on this). I happen to live in an area where there are several major hospitals and cancer centers competing with each other to attract patients ("consumers"). On the one hand, it is nice to have the choice, but on the other, it can become very confusing to sort out. These are places that advertise on television, radio, newspapers and billboards! To go full circle back to the subject of the thread, it would be nice if they took some of these advertising dollars and asked us consumers what would draw us to a specific place or for a specific treatment. Facility of scheduling and a place that accepts my insurance are tops on my list.


Hopeful

[Heart Sutra]

very well said,Hopeful.

Tailor made treatment...of the variety that top-athletes get... there ya' go.

It really does come down to time and money over and over again, despite all of us knowing better... Facility of scheduling and acceptance of insurance is the top of many a list, I'm sure.

May the future hold brighter things.
Have our doubts about excess wealth, but we'd give it a try if only to have the learning experience.

---Kevin and Sue---