Making Treatment Decisions

A recent article on making dialysis decisions prompted me to start thinking. Basically, just because a treatment is available, do you really want it? Its your choice. I know dialysis is not a cancer treatment but my point is there.

I am a strong believer in that doctors give you advice and how you choose to follow it is your decision. I usually follow my doctor's suggestions with medications and tests and other recommendations. But if something isn't making me happy I'm quickly going to stop it - and inform my doctor's office of my decision.

My quality of life is very important to me. I don't have a great quality of life because my health has taken many things away from me so I am diligent in preserving what is left.

If a treatment protocol is high risk or has a very low quality of life, I would be very hesitant on trying it. Taking the case of dialysis as in the article, if there is no quality of life being tied to dialysis, I think it should be up to the patient to make the decision to continue with it. The same with chemotherapy. If a patient does not want to go through with it again, it should be their choice.

But going back to my thought process. There are all these new treatment options out there. But they are also pretty strong. Strong medications will then have strong effects and strong side effects. So how bad are the side effects if you take this this medication? What will it do for your quality of life?

I think you need to think, and think a lot, before you jump at that new treatment option.

Treatment Changes

As I near a decade (how the hell did that happen?) since I was diagnosed, I have noticed how much breast cancer treatment has changed in the ensuing years. When I was diagnosed, it was slash, poison, burn. There was potential new treatment in the future but it was looming years ahead.

I remember being in a support group meeting and we were all overjoyed to be told that cancer was now being treated as a chronic as opposed to being a terminal disease. That was a great shift in the treatment protocol in our minds. We still mentally held our hands as our friends went through chemo, radiation and surgery. We hoped for treatment advances that were 'promised' somewhere off in the hazy future.

Now all of a sudden, I realize that I know several women who were treated for their late stage breast cancer, not with surgery, chemo or radiation, but with oral treatment. They are treated with Femara (letrozole) by itself or with Faslodex or, most recently, Ibrance.

Also in the past, Herceptin was raved about as a new and safe treatment for Her-2+ patients. And now there is even a second option of Perjeta for those women.

While progress has been made and I still look forward to more progress. I want cancer to be treated as an acute disease - meaning it comes on, is treated, and almost everyone is cured and goes on with their lives.

Genetic Testing Is Ahead of Treatment Options

Genetic testing has been researched like mad in recent years. Breast cancer genetic testing is no different than that the rest of genetic testing. But treatment options are not right up there with the testing results.

When this mother found out she had breast cancer she went for a lumpectomy to be followed by radiation and that would be it. But then she went back to her doctor to discuss radiation. More genetic testing had been done and she had inherited an alteration to a gene that is needed to repair DNA. And if radiation breaks DNA so it might be better for her to skip radiation and have a double mastectomy instead.

So she talked to a professor of genetics and medicine who said that information was wrong and she should be able to go ahead as originally planned. Then a group of doctors met and couldn't reach a consensus so they left the decision up to her on what to do.

I am so glad I am not in this woman's shoes. That would be a horrible decision to be forced to make. Which option would be better? Or which might lead her to a quicker death? I could not imagine the emotional stress.

And this shows a real problem that I had thought might be lurking in the background of progress. I have long been nervous iffy edgy unsure about the fast pace of research in some areas and the slower pace of advancements in other areas would be gaps that would leave the patient over a barrel so to speak. Some research takes longer than others to complete for a start and some times it takes longer to get to the starting point.

Perhaps we might need a bit more coordination here to lessen these gaps. But since we can't undo time, here lies the question: if research has lead us to the discovery of this new gene and how it might potentially impact a patient's tolerance of treatment, should the patient even be told about the gene? Since there is no research showing how it might or might not impact the success or risk of radiation treatment, how is a patient supposed to react?

I just think its blatantly unfair for a doctor to tell a patient that you have this gene that might or might not impact your course of treatment and we have no options to give you so you have to figure it out on your own. I would start by getting a new doctor who would provide guidance and reassurance to help make the patient feel confident that she is making a good decision.

What about no treatment?

I read this article a few weeks ago on the other option in a medical diagnosis, what if you didn't treat? I mean seriously just skip the treatment options? With a cancer diagnosis, they give you a list of treatment recommendations, but never say just don't treat.

But if you read the article, you will learn most doctors have DNRs and do not want to live if given an incurable diagnosis. I am leaning more to this side than ever.

I am on medications to treat the side effects of my medications. I am still coping with long term side effects of numerous surgeries, chemotherapy, and radiation.What if I skipped the treatments? I ponder this one and need to remind myself at doctor appointments to ask 'what if I chose not to treat?'. A doctor 'recommends' and 'suggests' but never 'requires'.

I mean if I am in extreme pain or coping with an infection, I am sure I will opt to treat. But sometimes I need to ask, what if I didn't treat? I am not one to run to the doctor for a sniffle and am concerned with adding more drugs to my daily intake. Every time I add one, I need to check for allergies and interactions.

If I had another cancer diagnosis, I think I would have a very serious discussion about treatment side effects, adverse effects, and long term effects. Quality of life vs longevity is a very important discussion.

Removing the 'crap shoot' aspect from RA treatment

Right now when you get diagnosed with rhuematoid arthritis this is the standard procedure:

1. Start with prednisone and plaquenile or a sulfa drug. Prednisone is used to reduce current inflammation for a relatively short period of time. Plaquenile is an old leprosy (really) drug that was found to also treat RA. But it can take 3 months or more to see the benefit Me? I was allergic to both prednisone and plaquenile. 
2. Oral methotrexate which can take 3 months or more to see the benefit. Methotrexate is the gold standard in treating RA but is also a very toxic chemotherapy drug where it is used in much larger doses. Me? It didn't work. My mother? After twenty years, she developed fibers in her lungs and went on oxygen for a while. Now she is off MX but her lungs are compromised.
3. Injectable methotrexate. One shot every week, unless fighting a cold or anything. Immune system is severely compromised. But it may not work for everyone either.
4. Biologics used in combination with methotrexate. But you can't take them if you had cancer. And after time, they may stop working so you need to switch to another injectable, expensive biologic.
5. New round of RA drugs, including Xeljanz (which is being heavily marketed by Pfizer to me) which is another type of drug.

 With RA, you can only hope the drug they put you on will work. When one stops working, they try something new. When they give you a new drug, you have to wait 3-6 months to see if there is any benefit for you. As you wait, the disease progresses.

The goal of treatment is to put RA into remission and reduce flares of the disease. But this treat and wait system make treatment a total crap shoot as you don't know what will work. And you may wait for a long time to see if it will work.

It sucks.

Since I am allergic to prednisone and plaquenile and I had breast cancer, my treatment options are more limited than the average bear.

But now a rocket scientist has come up with a blood test that will  help take the 'trial and error' or 'crap shoot' process out of  RA treatment. Its about time.

Medical guidelines discovered

Yesterday, in my usual scouring of the internet for the magic cure for all my ailments, I found an article about variability in cancer treatment and compliance with guidelines. Its an interesting read and how to make sure you are getting the right treatment with second opinions, good insurance coverage (plan ahead), yada yada yada.

And then I asked myself, what guidelines? I have always assumed that some little group of doctors got together and over a few beers put together their guidelines for treatment for each ailment. Little did I know that NCIC provides guidelines for treatment of all cancers. Some of them are even available in patient format - meaning readable in by normal people who did not go to medical school. You can see the treatment guidelines for stage I and II breast cancer here.  And a list for all available patient guidelines by cancer type.

I cannot tell you how cool this is. How often have I wondered about my treatment plan, was it in compliance with guidelines - meaning did it give me the best possible treatment? It was a lot of good reading and I want to review it all.

Then if you go to the link for clinical practice guidelines, at the very bottom of the page is a link to all guidelines which takes you here for even more reading but it quickly becomes a bit technical because it is aimed at doctors. Feel free to start deciphering.

Finally, there was a link to the guidelines for other diseases - meaning not cancer - which are at the National Guideline Clearinghouse. These are uber-cool. I immediately looked up RA and will move on to fibromyalgia shortly.

So do not click the links unless you have a few hours to give yourself reassurance that your treatment plans are correct. They will suck you in quickly. I am going to work an hour late because I got a tiny bit side tracked.

Those pesky guidelines again

You get diagnosed with an ailment, you follow (blindly or  not) your doctor's recommendations.  You make your decisions and you undergo treatment.  Your doctor is following the guidelines and you do your research and make your decision based on their recommendations and the current guidelines.

But what if, the guidelines have changed recently and you need to rethink your decision. What would you do with the old guidelines or what would you do with the new guidelines?

I found this story interesting of a local journalist confronted with a DCIS diagnosis and changed guidelines. DCIS is often over treated - or so the current guidelines believe. But which cases will go on to become something bad or not. What treatment options should be followed? Its a case of mastectomy vs. lumpectomy vs. no surgery.

As patients spend more time educating themselves on treatment options and guidelines, their decisions are more complicated. They want to be the educated consumer. But it can be very confusing to try to learn about statistics in medical care in treatment options.

Damn those pesky guidelines.

Too many of us aging

We are getting older so will there be enough doctors to care for us?  Especially for cancer care?

And will we understand our options?

Us baby boomers need to stop aging to doctors can catch up with us. We are reaching the, and I quote, 'tumor prone years' as a generation. (I hope I have already had my share of tumors, thank you.)

In addition, oncology is a quickly evolving medicine these days - personalized medicine being on the forefront - as scientists are racing to find a cure for cancer. The doctors have lots to keep up on.

Patients do too. They need to stay informed on their options and understand what treatments are curative (good word) vs. which are palliative (bad word). We need new ways to help patients understand their options.

Finally treatments are getting more complex and not necessarily very helpful. "Of 13 cancer treatments approved by the FDA last year, only one was proven to extend survival by more than a median of six months, the report said. The drugs all cost more than $5,900 for each month of treatment."

Ouch! (That's over $70,000 per year... but wait no one is living long enough to take it for a year.)

Finally, here is a list of recommended questions for patients facing a cancer diagnosis:

• How long does the average person with this cancer live?
• What is my likelihood of a cure?
• If I cannot be cured, will I live longer with treatment? How much longer?
• Will this care directly treat the cancer?
• What are the side effects?
• Am I eligible for trials?

If your health team does not have answers, “you need to find another set of providers,” Ganz said.

So if we all could just stop aging, and let the medical world catch up, we might be better off. I am still 37 so I am doing my part.

Insurance wars and woes

This morning's news includes a story on a gentleman with stage IV esophageal cancer who is disputing with his insurance company to cover the costs of his treatment. He is treated at Dana Farber and is pursuing alternative treatments. I am fully supportive of efforts to prevent insurance companies from making medical decisions.

Also, I am a big fan of preventing bloated insurance costs where people expect everything to be covered and then can't understand why their premiums keep going up in leaps and bounds. There has to be a happy medium while is why insurance companies need to be allowed to draw the line somewhere.

As you are aware, I do not believe insurance companies are capable of making individual medical decisions. They may employ their own oncologists and other doctors to review decisions. But unless the doctors have met with the patient and examined them, they have no idea what they are doing. At the very least the patient's doctors recommendations should be the guidelines followed. Not someone who is reading an actuarial guide and cost/benefit analysis. That is no way to make a decision that might permanently affect some one else's life.

However, and this is a big fat HOWEVER, if the treatment has not been shown to have any proven results I do not believe the insurance providers should be required to cover it.

There are all sorts of quackery theories on curing cancer and myths about treating and curing cancer. There are also many alternative treatments that are not necessarily covered by insurance but have proven to be beneficial to cancer and other patients. This would include things like acupuncture.

The problem with this gentleman's request is that he is asking for coverage for something called Insulin Potential Therapy or IPT. I googled it and the first two results were from Quackwatch.org and from the American Cancer Society showing that there was no real proof it works.

While I understand he is fighting for his life, I am actually on the side of the insurance company here. The treatment he wants has not been shown to be effective. He has a full medical team available to him where he is being treated. While he may be feeling better currently, there is no way to tell if it can be attributed to the IPT or some other reason.

Rheumatoid treatment options

When I was diagnosed with rheumatoid last fall, I was already fairly aware of treatment options as my mother has had RA since 1989. The current theory for treatment is to hit it fast and early to slow progression and joint deformities.

I was immediately put on plaquenile and prednisone. Plaquenile is an old drug from the 1930s or so and has successfully been proven to treat RA but it is slow working - months to have an effect - so usually prednisone is given for a brief period of time to get the swelling and  pain down faster. That was bad news for me because I turned out to be allergic to both.

I was then put on methotrexate orally and after three months, was upped to the maximum oral dose but still not much progress against RA. Then after another three months, I was switched to injectable methotrexate which is not my favorite thing. This seems to be causing a few problems in reacting to the injection and I have been concerned about my options.

I go to my new rheumatologist in July to talk options. I have limited options because all those lovely new biologic drugs like Enbrel and Humira that are advertised on TV are not for me because they don't like giving them to people who have had cancer. (There's a choice - living in pain or cancer.) There is one new option that has only been out for a short time that might be a possibility but it is very expensive.

So while I have been over thinking this whole thing and spending all too much time consulting with the evil Dr. Google I just learned about a new study that says that the older drugs - methotrexate, plaquenile and another drug that I have not been put on are proving just as effective as the new and expensive ones that I can't take. And they cost a lot left. The article also notes that between 20-40% of patients do not react to methotrexate. So maybe I am not alone.

Now I am going to stop over thinking this, step away from Dr. Google and wait until I see my rheumatologist next month.

Off to play doctor

No, not like that! Get your minds out of the gutter!

I have an appointment this morning with my pain management doctor. My back has been hurting a lot recently. Having been through the medical school and now having the degree called 'Professional Patient PW' (PW=Perpetually Waiting), I am ready to tell my doctor the next steps,unless he has some wizardry that I don't know about.

My back has caused significant amounts of pain recently which immobilizes me and makes me cranky. We were going to wait six months between visits but I opted for four months and then called and moved my appointment up  by two weeks because of the pain.

My theory is that the last 'fun' procedure which involved heated needles in my spine has worn off (meaning the pesky nerves have grown back) and its time to schedule a new one. I am not sure what there is that can be done in the meantime and I know it can take up to 6 to 8 weeks to get it scheduled as well.

But I hope the appointment will go l ike this:
"How are you doing?"
"Not well, my back  hurts a lot. I think the last treatment wore off."
"Okay, lets see if we can schedule it for next week."

I know it won't be that simple. It will involve him bending me to see how much he can make my back hurt and poking and prodding. But I hope it ends up the way I want it with an appointment soon. Maybe he will even have a short term solution for the interim.

The Best New Doctor Reaction Yet

He laughed.

I went to see a physicians assistant in the rheumatology department yesterday about the bump on my arm (not on a log). He was a very nice man and spent some time talking to me.

He said what I have is probably a ganglion cyst and he could stick a needle in it and drain it but it might come back. I said lymphedema arm. He said 'oops, no needle'. I said when I move my thumb around it makes it hurt more, he said I could give you a thumb splint but that would make your arm swell up.

So we left it that I will monitor admire it, and if it does become problematic, I would be referred to a surgeon to see if there was anything else that could be done. On the other hand, sometimes they go away on their own, or disappear and then reappear. But its not arthritis and its not cancer so what they hell, I can stick with it.

Then he asked me how I was doing with the RA. I told him about being allergic to both plaquenil and prednisone. Prednisone is often given to RA patients to give the other treatments a boost to get them started or during a flare to help get it under control. Not for me.

I also said that I can't take the organics like Humira, Enbrel, etc because of my cancer history. And I'm allergic to benadryl and the cillins as well.

He laughed and said 'oh you are a great patient to treat!'. I have multiple ailments, can't take many regular treatments, and have allergies that pop up all the time.

Yes I could see the humor in it. But at least I didn't have to scrape a new doctor off the floor for once upon hearing all my medical history..

I was unenlightened

I broke down and called my rheumatologist's office yesterday about the bump on my arm (not on a log). The problem was who to talk to.

The nurse practitioner I saw a couple of weeks ago is on vacation.

The rheumatologist I saw first left and I have not yet met with my new rheumatologist

I ended up talking to the physician's assistant who has never met me. We will meet on Thursday afternoon.

He did tell me it sounds like a rheumatoid nodule - I said that I am rheumatoid factor negative and statistics say I should not be getting nodules. But I did switch to injectable methotrexate which could be what caused it so I might need to switch medications. But with my medical history I can't take a lot of them.

He did also say it could be a ganglion cyst which could be drained or removed. Oh but since its my lymphedema arm there may not be any treatment options for me.

Which means I  may be SOL. Crap.

I am focusing on this because I am ignoring next week's assorted tests that I would prefer not to think about.