New Questions To Ponder

Sometimes I think I should stop receiving and reading emails. I got too many this week:

• Is Your Fibromyalgia Primary or Secondary? Basically from which ailment your fibromyalgia is manifesting it will indicate the correct direction for a more successful treatment protocol.
• New Guidelines for Adults with Chronic Pain and a History of Cancer - Oh, joy. Just another example of how cancer changes everything... "If a patient reports new onset of pain, clinicians should evaluate and monitor for recurrent disease, second malignancy, or late-onset effects of treatment." How does that sound? Because with cancer, every pain not only could signal RA progression it could also be cancer mets....
• Cancer Survival is Worse in RA Patients - More joy. And just another example of how cancer changes everything... There are higher mortality rates for many cancers for patients with rheumatoid arthritis.

So now I have so much good news in my life, I am not sure if I should go back to bed or should I just pretend I didn't read any of it? 

This is a good sampling of my life these days. First of all lots of conflicting information. Then lots of information on how one ailment complicates treatments for other ailments. And long term prognoses can just suck.

Its a bunch of numbers

With a cancer diagnosis you get a bunch of numbers. Prognosis, cancer markers, statistics, blood counts, and more. The numbers can tell us good things and bad things. We can read bad things into good numbers and good things into bad numbers. We can be told that we were too young to get that or too old to get this. We can let the numbers scare the crap out of us.

Or we can let them just be numbers.

I am not normal. I got thyroid cancer when it was very rare - approximately 10,000 cases annually. I got breast cancer when I was younger than expected. I have Rheumatoid Arthritis which was not expected - even with a family history of it. According to the numbers I should be more likely to get a different autoimmune ailment.

I have friends who got early stage cancer diagnoses with relatively rosy prognoses who are no longer with us. I have a friend with an ovarian cancer stage IV diagnosis who is still with us and doing well more than three decades later. I have friends who are still here after stage IV diagnosis who go to treatment, get periodic CT and PET scans and are doing well. I have other stage IV friends who are doing just fine and are not in treatment. I have many friends years and decades after a cancer diagnosis who are still doing fine.

I met another woman online this morning when I read her story about how she shouldn't be here either if she listened to the numbers. Our doctors can only tell us the numbers, but they can't tell us our lives.

Do you want the truth?

Do you want the truth from your doctor? Of course we want to hear the truth. BUT. Are we really sure about that? I mean we want our friend to honestly tell us not to buy that dress because it makes you look fat. Or we want the home improvement contractor to give the honest date they will be done with the renovations.

But sometimes a little blurring of the facts can be a welcome respite from reality. The truth may need to come out at appropriate times. If there is an 95% survival rate for a medical ailment, do you really want to know that ahead of time? Or do you want to be told that most people come through it fine? If you are told that number of 95% are you going to fixate on the 5% that don't make it? If you are diagnosed with cancer and the doctor starts running on and on about 5 year survival rates and tells you its only 87%, do you really want to hear that number? Or do you want the doctor to say things like 'we are optimistic about your treatment and most people do quite well with it' Eventually you will find out the survival rates and can absorb them.

I know one woman with her cancer diagnosis, she told her doctor she didn't want to know any numbers - not her cancer stage, or number of positive lymph nodes, or anything. She just wanted to focus on treatment. Eventually she did find out all her stats but it was on her time.

A big hot button in the news this morning is that doctors are not completely honest with their patients. There are two parts to this issue - one in telling patients about prognosis and expected outcomes and the other with revealing their alliances and payments with drug and medical device manufacturers.

For the first issue, I think I want some information but only want hard details and numbers at a slower rate. At the end of my breast cancer treatment, I finally screwed up every brave nerve I had and asked my oncologist what he thought of my prognosis. I would not have been ready to hear it earlier, not that it was bad but I wanted needed to go through treatment with as much optimism as I could attain. Although doctors may not be as forth coming about outcomes and expectations up front, they also need to retain some compassion and explain as much as the patient wants. If you over whelm a patient with a poor outcome, you can send them spiraling into depression and despair. There needs to be a balance.

But if there has been an error in my care, I want to know about it. When I had my gall bladder out, in post op there was a giant bruise spreading across my stomach. From the nurse's comments I knew that was unusual and it was the largest pain area during recovery. It appears the surgeon was a bit heavy handed at some point - even though they were four tiny incisions, the tools used my have been pretty forceful to leave a bruise. But did he ever mention it to me when checking on me? No. Did I bring it up? No because I was in the post anesthesia haze for a while and my brain didn't function properly. As a result, I am fine but will probably avoid having the same surgeon again.

For the second issue of revealing affiliations and payments with medical manufacturers I think my stance is pretty clear: treat me based on what I need not on the weight of  the doctor's wallet.

Most of the time honesty is the best policy but sometimes a little fudging can be appreciated.