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Are the Long-Term Risks of Chemotherapy & Other Cancer Treatments Under-discussed?

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.

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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?

 

Are Long-term side effects of #cancer treatment underdiscussed?
#breastcancer #chemotherapy #radiation

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Aslioz

Thursday 11th of May 2017

How about eye sight problems after tamoxifen? Have you experienced such a thing? I have and my doctor told me that it is because of my age (38 )!!!

Janet

Tuesday 27th of August 2013

Is there a resource for survivors where we can read about long term risks of the treatments that we had? Do we need to look at our specific treatments and find out what if any long term effects relate to those treatments ?

I have developed several issues lately that have been autoimmune related. I also have the chemo-brain stuff, tiredness, vertigo, and adnauseum. My friends tell me to get over myself that my treatment was 5 years ago, and I should be past all that.

My doctor has dismissed me as cured because unless I have a new cancer there is no treatment. I had dcis triple neg, brac1! I have had all the recommended surgeries so I am medically done. This doesn't feel correct. There should be doctors who treat just survivors. There are enough of us to support a whole new specialty. Just saying.

Nancy

Tuesday 27th of August 2013

Janet, What a concept - doctors who just treat survivors. It's remarkable that some doctors even use the term cured. As to your question, yes, one does need to look at her specific treatments and the potential side effects. Every case is different. I'm sorry you have lingering side effects and that your friends and doctors seem dismissive. You deserve validation. Thanks for your insights.

Elizabeth J.

Saturday 24th of August 2013

I know there were side effects not mentioned or underplayed, but I think overall my oncologists did do a good job of informing about side effects.

My medical oncologist said since I am a pianist he would watch my fingers very closely for neuropathy and if needed adjust the treatment schedule. I do have an annoying tingling in my fingers, but I still have feeling and full use. My feet are another story.

My radiation oncologist warned me about the possible effect on thyroid, although even he was shocked at how much my TSH had jumped when I went for my annual thyroid test a couple of months after treatment. I do not remember being warned about continued cramping even months later in the areas radiated, but maybe he used a more medical term for it.

I was warned about fatigue from both chemo and radiation, but I was under the impression that it would be gone within a few months after treatment ending, but it seems to be either permanent or very long term.

I do know a number of other breast cancer survivors whose oncologists were not as open with them about long term side effects or as concerned with after treatment quality of life.

I believe it is important to balance risks and quality of life. I knew I was high risk (inflammatory breast cancer) so I knew I had few options, but many women with less aggressive cancers feel betrayed when they find they sacrificed quality of life for what turned out to be only a small difference in survival.

Nancy

Sunday 25th of August 2013

Elizabeth, I'm so glad you were well informed and it's wonderful your piano playing fingers are still functioning pretty well. That's great. I completely agree with you about the balancing thing. It's just important for patients to be fully informed and not have side effects downplayed or worse, ignored. Thanks for sharing.

Catherine - Facing Cancer Together

Saturday 24th of August 2013

Sometimes I feel like there is SO much not being said in those quick consultations. One thing I need to do is learn to get what I want from those exchanges instead of being such a nice patient. As for the long-term effects, I do think they matter. No one told me about fertility options involving freezing ovaries or IVM . . .

But I really think the question of do we want to know is important. Do I want to know my survival odds with advanced breast cancer? Nope (even though I already know, but stats can change!), since it's going to do me a whole load of no good. So there's a give and a take, and I guess the doctors are just as uncertain how much to give or take. Maybe. Or maybe I'm just being the nice patient again!

Nancy

Sunday 25th of August 2013

Catherine, For patients such as yourself, not discussing the possible effect on fertility well, that's inexcusable and just plain wrong. I'm really sorry this was not discussed with you so you that you could have possibly explored options. It is a give and take for sure. And sometimes patients are too nice. That's a balancing thing of a different nature. Thanks for sharing your thoughts.

debby

Saturday 24th of August 2013

What was NEVER discussed was 'post chemo pain syndrome'. Sometimes the pain is bearable. Sometimes the pain is unbearable. It just seems like this would have been discussed. During some of the extreme episodes, I felt like a big baby, to hear that nothing was wrong, and to be sent on my way, only to discover, years after the fact that post chemo nerve pain is extremely common.

Nancy

Sunday 25th of August 2013

Debby, I'm sorry to hear about this pain you have. A patient should never be made to feel badly for expressing concerns about his/her pain issues - or about anything else for that matter. Patients want validation. I don't thank that's asking for too much in most cases and most patients do not bring up something at an appointment unless it's bothersome. We aren't there just to whine. If anything, most patients tend to not share enough. Thanks for commenting, Debby.

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