Highmark v. UPMC

Ok, so as if I didn't have enough to worry about, the battle between Highmark and UPMC has me seriously worried.  I wrote the letter below, but I don't know who to send it too, or even if, under civil service laws, I am allowed to send it to anyone. Anyway, what do you think?

To Whom It May Concern, 

Let me introduce myself. I am a 32 year old state-employee, and last year, I was diagnosed with head & neck cancer. I consider myself very lucky to work in a system where the support from my co-workers and management was overwhelming, I had plenty of sick leave, and health insurance covered nearly everything.  It took a while, but I found some doctors I really trust with my care. They happen to be at UPMC Cancer Centers and UPMC Eye & Ear.   

Despite getting the best of treatments, my cancer has since metastasized, and although I am not currently in treatment, I will require follow-up care for the rest of my life.  For now, I feel great and continue to work in the state system, and I would like to continue with the doctors who are familiar with my previous treatments and close to home.

Ironically, if I were seriously ill, to the point where I had gone on disability and was relying on Medicare and Social Security, I could continue to see my current doctors. However, as a state employee living in south-western Pennsylvania with a serious illness, the only real options for me are Highmark health plans. If UPMC and Highmark continue on their current paths, they will split ways next summer. At that time, it looks like I will lose access to my doctors unless UPMC and Highmark come to some sort of agreement.  I don’t know if the solution to the current impasse should come from legislation, the consciences of whoever is making the decisions for UPMC and Highmark, or if I should be pestering the PEBTF to offer a wider range of insurance options.  I don’t really care. I just want to keep my doctors.  

My oncologist assures me that if the split occurs, I can get my routine care at AGH and go to Cleveland for a top-notch research facility as needed. But Cleveland is 3 hours away, doesn’t have the doctors I know,  and I don’t want to waste the time I have driving to a city where I don’t know anyone.

I know my situation is not unique, there are thousands of people out there facing similar situations. Please don’t make us waste our days driving to great research facilities out of state when there is one so close to home. 

Lisa Moore

That is my rant for the evening. Thanks for tuning in!

A hard turn.

So, most of you know it's been a rough couple of days.  I had a scan on Thursday to follow-up with the treatment from last august, and see what else might be going on.  I got the results the same day from my doc. The good news is that the five spots that were treated are gone, leaving only cloudy looking spots on the CT.

The bad news  - two new spots on my lungs. They are small, but I had really hoped that this scan would be clear.   Since my type cancer is usually slow growing, and will sometimes just stop growing for no apparent reason my docs think the best approach for now is to wait 3 months and see what happens.  Honestly, I'm not sure what will happen if the next scans show more spots. There has been talk of doing more of the radiosurgery or trying some chemo.

One of the hard things about my type of cancer is that chemo doesn't work to keep it from coming back, which is why I haven't had any. Some people have had success with it keeping tumors from growing, but it is chemo and would likely have ugly side effects. 

So, I (and you, my friends & family) have to make the hard turn from thinking of this cancer as something that I will defeat to something that I will live with.   Victory will not be becoming cancer-free, but will instead be living my life as full as I can despite health issues. Lest you think you are getting rid of me that easily, people live many, many years with this type of cancer. And I plan to be one of them.

The best hope for a cure lies in new research, and since it is rare, large nonspecific charities like the american cancer society don't give much, if any, money toward this research.  If you would like to donate toward research that might help me, or others like me in the future, please consider accrf.org. 100% of donations will go directly to fund ACC research programs.

Round 2 - done!

So, I finished this round of radiation on Aug 15th.  I didn't think to update this then, just because it has been soooo easy! (I know, leave it to me to take the easy way out)  The worst is laying in the "right" position for extended periods of time, but I learned a few tricks to make that easier (relax, relax, relax, and bring some tunes) I've gotten some nasty heartburn (which is weird for me) but I have no idea if that is related or not.

Oh well I guess that's all for now.  I have a follow-up appt in a month (just to make sure I  don't have any weird side effects) and scan in about 2 months. guess that's it for now...

schedule change again

Ok... now it is ending Aug 15th. when they made up the schedule last time, they forgot that one of my spots gets 4 zappings instead of 3.

I can hardly believe that it's been a whole year since I was diagnosed.... it has really flown by. But, in other ways, it really feels like a lifetime ago.  So, tomorrow, help me celebrate - wish me a happy cancer-versary!

schedule change

Ok, they are changed my schedule again! Five days a week until Aug 11. ugh. It isn't bad, but an hour or more is a LOOOOONG time to lay absolutely still with your arms up over your head. After about 30 min, my one shoulder just starts to ache, and by the end, my hand was just shaking.

Oh well, what must be done must be done.

Anybody out there in cyber world want to drive me next week to give my sister a break? call or email!

radiation...again...

So, I start this afternoon. I still don't know for sure how many treatments there will be (I think 3 or 6), but everything I've read and heard says this should be way easier than the radiation I had before.  

I just wanted to take a minute to say thanks to you all (and all my family and friends). I shouldn't have been, but I was very surprised this week to have so many people offer to give me rides, or whatever I need over the next week. A friend sent me a video which sums it up nicely.

www.youtube.com/watch?v=mZE_8pMRH7Y&feature=related

Thanks!!! 

an update...

I thought I'd take a minute to give you all an update on my situation.  I decided to go ahead with the clinical trial. It was far more difficult decision than I thought it would be. I hope that your family members or friends never have to make a choice whether or not to a clinical trial, but if they do, please be patient with them, listen to them, ask them questions. If they ask, you can suggest, but you have no idea what you would do in that situation until you are in it. I thought I did, but it is far more complicated when it is your body. 

But, I digress. I decided to do the clinical trial because it seemed to be a good way to stop the growth of the nodules (mini-tumors in my case) that are in my lungs with many less side effects than there would be with surgery or chemo (even assuming we could find a chemo that would work). And it seems to me to be a better option than the one preferred by some doctors of "yeah, it's probably cancer growing in your lungs, but it's slow growing, so we're just going to let it grow for a while" (ok, I paraphrased, but you get the gist of it) 

The actual treatment will be stereo-tactic radio-surgery (cyber-knife, gamma-knife, novalis are all brand names), and consist of 4-12 treatments of 45 min to one hour each, every other day. For treatments, I have to lay very still, saran-wrapped into this molded form for my body, with my arms up over my head. I feel a bit like a burrito. (I had a preliminary scan yesterday with the same set-up). I'll start treatment either next week, or the week after. Just like regular radiation treatments, they have to spend fair amount of time planning exactly where the radiation will go.  I'll let you all know when the treatments will be.

And, since the question of the day seems to be "yes, but how are doing emotionally?" I seem to be handling this all ok. In a lot of ways, it is easier to deal with it now that we are pretty sure it is cancer than it was waiting for the next scan. (of course, I'd still rather be just waiting for the next scan...)

Decision Time!

Well, It has been two weeks since my last doctor's appointment, and they FINALLY sent me the paperwork for that clinical trial.  I still haven't gotten the hard copies, but they emailed me the pdfs of the files. I've read all 40 pages (40!!) of what will happen if I decide to do this trial, and what could happen if it goes bad, and what could happen if it goes well. It sounds to me like the science is there to say that this probably works in other cancers, and the treatment has relatively minor effects, so I am leaning toward doing the trial. I've emailed several more questions to the doctor's office, so hopefully I can get answers, and get started on the path I choose instead of just wavering at the corner.


Making this decision is much harder than I thought it would be. I think I am over-analyzing it.  It is very hard to make a choice with such lasting consequences, when I can't predict with any certainty what the outcome will be with either choice.

Ask Two Doctors, Get Four Opinions

My appointments were....interesting. I feel like I got 4 opinions from 2 doctors.  The first appointment was with a medical oncologist. He took the time to show me the scans (which I hadn't seen yet) and calmed me down a bit. Apparently, the radiologist said in the report that there are 4 spots, but he only marked 3 with arrows?  Neither doc could find the mysterious spot #4.  The three we could find are spread out all over my lungs, with the biggest being very close to my heart.  The other 2 are on either lung.  (one high and one low, but I don't remember which is which.)  All three, both docs emphasized are VERY small.  They agree that needle biopsy is not an option at this point.  Since ACC tends to be indolent, if they are cancer, doing nothing is a valid option. - There just aren't good systemic treatments.  Then they start to differ in their opinions.


Doc #1  - (medical oncologist) - they may or may not be mets. Western PA residents get lung nodules at higher rates than other areas. They could be scar tissue. The fact that they grew from the last scan could just be an artifact of the scan technology. even IF (and it's a big if) they are mets, I've got lots of time to decide what to do, since ACC is such a slow grower. Wait three months, get another chest CT - NOT a PET-CT

Doc #2 - (radiation oncologist) - opinion #1 - they are mets. but, ACC is indolent - it doesn't grow quickly. Standard of care is do nothing until they  get bigger or start to cause problems.  Wait 3 months, get another PET-CT

Doc #2 - (rad onc again) - opinion #1b - they are probably mets, but we can do a wedge biopsy to confirm. (At this point, I DON'T like this option, neither did he, he just brought it up as an option)

Doc #2 - (rad onc again) - opinion #2 - they are mets. cyber knife 'em. He is heading a clinical trial where if there are isolated mets, they treat them with radiation surgery (not sure of the exact kind - they are mailing me info since the research coordinator had left for the day) to see if this allows your body's immune system to better deal with the micro-tumors that are present.  This would entail 3 treatments (not sure if it's three per spot, or just three) with minimal short term side effects  - fatigue, possible burns, possible dependence on O2 (very unlikely given my age and other risk factors), possible sore ribs for a month or more.  Long term side-effects are more concerning, given my age.   This would probably still be an option in 3 months, after another scan - if I still have fewer than 5 nodules - a requirement for the study.

I'm not sure what I'm going to do, besides looking into it more, find out more about the study, side effects, etc.

The good news is that they all agreed that this should currently (and if I should choose to have it after the radio surgery) should have no effect on my ability to use APR or SCBA - so I am BACK on the the clan lab team ( yay!)

Oh, and I was VERY impressed with both docs, but especially the rad onc. He even gave me his cell # if I have questions later.   I do already, but I figure docs get weekends, too. I'll give him a call on monday, and make double sure they are sending me the info.

I'm Back!

Wow - I was hoping I was pretty much done with this, but I guess the cancer has other plans. 

I never really shared the scan results with you all - so here is the nutshell version.

The scan in December showed weird activity in my head and neck regions, but the docs said it was probably just left over from radiation "probably nothing to be nervous about, but we should watch it.". So, I had another scan in March. This time, my head and neck were fine, but there were some new really small nodules in my lungs - "probably nothing to be nervous about, but we should watch them." So, I got yet another scan this June (this time of just my chest) and the stupid nodules were bigger (but still small).  So, while we can't say for 100% sure that the nodules are my cancer returning, my doc doesn't want to take chances.  According him, they are still to small to biopsy, but since my particular variety of cancer is one that when it spreads, spreads to lungs, we want to take this seriously, and use this opportunity to "stay ahead of this."

So, the upshot is that I have two appointments with different oncologists tomorrow to see what they each recommend.