One of the great things about blogging is reading what other bloggers write. It’s how ideas and opinions are exchanged. It’s how connections and friendships begin. It’s how conversations get going and sometimes snowball into bigger discussions across the blogosphere and beyond.
While reading a piece by Dr. Elaine Schattner titled, “How Much Do You Want Your Doctors to Say About Risk of Treatment?”, my mind was immediately taken back to the day when my oncologist recommended chemotherapy.
Oncologist Number One, Dear Hubby and I were huddled together in one of those typical exam rooms with the buzzing florescent lights and poor ventilation discussing and analyzing blue, green, red and yellow colored bar graphs depicting how doing or not doing chemo added percentage points to my statistically based odds of being around in five, ten or more years.
It was a very odd topic of conversation.
After finalizing our decision to go ahead with chemo, I distinctly remember Dear Hubby looking at Oncologist Number One very seriously and asking him, “Is this the most aggressive treatment path possible for fighting Nancy’s cancer.”
Oncologist Number One nodded and said, “Yes it is. We are choosing the most aggressive regimen available to us based on the pathology of her type of cancer.”
I think that’s probably about the time I lost it, stood up and headed straight for the Kleenex box.
Of course the three of us went on to discuss the usual side effects to expect like hair loss, nausea, flushing, mouth sores and the like.
However, the potential for serious long-term side effects was not discussed.
This gets us back to Elaine’s post in which she asks the question, “How much do you want your doctors to say about risks of treatment?”
This is a great question.
Admittedly, when first diagnosed, I was pretty much focused on the immediate future and the immediate side effects to come. I wasn’t looking too far down the road.
Was I worried about feeling nauseous and having my hair fall out? You bet I was.
Was I thinking about potential heart, liver or kidney damage or other possible lingering side effects such as neuropathy and cognitive issues which might affect my life down the road?
Not so much.
Cancer forces you to deal with the here and now. The fallout, or domino effect, often comes later.
I do remember Oncologist Number One talking a little bit about heart damage risk. I remember this because before beginning chemo, I was required to have an electro-cardiogram (very painful procedure less than two weeks after a bilateral, btw) to see if my heart was strong enough to even begin chemotherapy. I’m pretty sure this is standard procedure for certain drugs.
And why has there been no follow-up post chemo to see if any heart damage was done? Do we just wait for symptoms/problems?
Despite being “sort of informed” about the potential heart damage risk, I don’t think this particular risk really sank in, and I’m not sure it does for most patients.
I don’t remember any other long-term risks being discussed at all.
With Robin Roberts announcing she has a blood disorder called myelodysplastic syndrome (MDS), which more than likely was caused by her chemotherapy regimen (entirely different from mine), I wonder if doctors and patients will be discussing long-term potential health risks of chemotherapy (or any treatment) a bit more in depth.
I hope so.
While I certainly do not think a rare case such as Roberts’ should influence others to not undergo chemotherapy or any other recommended treatment, I do think her case brings to light once again how important it is for patients to be given the complete picture about all aspects of treatment, including short and long-term potential side effects.
I also think it bears repeating again that you (or someone close to you) must be your own best advocate on all fronts, including this one.
Never hesitate to ask questions and don’t quit asking them until you are satisfied with the answers.
Of course, some patients want only the bare minimum amount of information. Their wishes need to be respected too, so there’s a fine line here. However, many patients (like me) do want to know as much as possible and I think they deserve to have the entire package, the good, the bad and the ugly, thoroughly explained to them.
Some people say doctors don’t have this much time to give patients. To that I say, “bull****.”
In the end I have to ask myself, would I have changed my treatment path if I had realized at the time the risks were greater than I understood them to be?
Probably not, but that’s not the point.
The point is this: I had a right to know about long-term potential risks and side effects of my course of treatment.
So do you.
Do I wish I had delved a bit deeper and asked a few more questions about long-term risks and lasting side effects of chemotherapy?
You bet I do.
Do you feel the long-term risks or side effects of cancer treatment (of any kind) are underdiscussed?
Are you grappling with cancer treatment (of any type) fallout?
Are you a “I want to know everything” or a “tell me as little as possible” kind of patient?