You're Not Crazy: A Patient's Guide to Unheard Side Effects

By Stacie-Mullin

Last Updated:

3 min read

We have all seen the commercials on television or the advertisements in magazines: a group of people sitting around a fire while someone plays the guitar. Everyone is smiling widely and laughing hysterically. Or what about the television commercials with a woman or man running in a marathon or snorkeling in the ocean, seemingly enjoying their lives?

Then you hear the announcer mention a treatment for cancer. It may even be a drug you are taking. You think to yourself, "Wait a minute, that is not what my life looks like. I do not look that healthy and happy, and I sure do not feel like they do."

Then they start spewing off all the side effects of the drug. You know, nausea, vomiting, dizziness, loss of appetite, and even big scary ones, like heart attack, memory loss, and even death. It's scary to hear, but it cannot be that bad; the people on T.V. are still out enjoying life.

The anxiety of a new prescription

Unfortunately, we have no choice and have to take the prescribed medicine because it will hopefully save our lives. So you discuss it with your doctor. "What should I expect, Doc?" Your doctor will give you a generic list of side effects you may experience. Then they will say some are very rare, but to call them if you experience any side effects that haven't been discussed.

Facing the unknown

You leave the office full of anxiety because it's another new prescription, and the unknown is making your head spin. You may get your bottle of pills and stare at it. You may cry because you are scared of what it might do to your body and mind. I am guilty of that.

With a swig of water, the pills are on their way to your belly to hopefully start killing your cancer with no side effects. That doesn't happen, though, because you are one of the lucky ones that gets the side effects. I try never to look at the insert or Google the drug because it will make my anxiety worse.

When your doctor ignores your side effects

So a couple of days later, you still have side effects, some that are unbearable. At your next appointment, you mention them to your care team. Then the doctor responds with, "I have never heard of that side effect from this treatment." Then they follow up with the worst statement you could say to someone in this situation: "Maybe it's just anxiety."

It's not "just anxiety"

Your feelings are diminished and downplayed with those two simple statements, and you probably feel pretty angry. You are not crazy, it is not anxiety, and it is not always in your head. Side effects are different for everyone, and for someone to dismiss your feelings without ever taking the drug themselves hurts.

Finding your voice and your community

If this happens to you, my advice is to hit the computer and check out a Facebook group or a group like AdvancedBreastCancer.net. Ask the community who is on the therapy and what their side effects are. I guarantee many others are experiencing the same symptoms and side effects. This will ease your mind, and maybe you can mention it to your doctor at the next visit. Also, visit this FDA website and report any side effects you may have.

Trust yourself

Doctors do not know everything. They are not in our shoes, ingesting these poisons into their bodies. They only have their studies, and that's if they have even read up on the studies. That is why community is so vital. Even if it is virtual, you'll find that others are going through the same things. And if you're unsatisfied with the care you're receiving, seek out a second opinion.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AdvancedBreastCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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lumpie Member

Yeah! What is it with all these people who have hair and feel like playing tennis or going for a jog? "I'll have what she's having!" I am so grateful that, at least since my diagnosis, my doctors have never made such an insensitive comment as... in essence.... "maybe it's all in your head." (I was over quota on those by the time I was diagnosed!) But it's true that "doctors do not know everything. They are not in our shoes, ingesting these poisons into their bodies." Sometimes my docs don't know what to do about my symptoms. Sometimes they tell me to hang in there a while longer and see how it goes. Often we try to treat the side effects, but if that fails, they are candid in telling me that I could go off the medication but that would mean giving up a line of treatment and going on something else... that might have worse side effects and be less effective.... which, of course, I already know. Quality of life matters. These are never easy questions. In the meantime, these picture perfect, fit and energetic people feel like a betrayal. Still, I can't deny that I'd like some of the "happy juice" in their drugs. 
1. Mary E. Costello Member
 
 Hi @lumpie. Gosh, I have seen so much since my diagnosis in July 2020... in terms of what people deal with. This is is not the first time I heard someone say that they take issue with those who are doing so well; or have a lesser burden in some way. I keep this in mind with my own gratitude, in the fact that I would say that "all bets are off" in terms of my optimism and so forth... once my cancer becomes more debilitating or introduces things that don't meet my own standards of "quality of life." I know for sure that my "happy juice" is because I still feel good. My side effects are minimal. And, while I have physical pain, it is mostly chronic pain I've lived with for a LONG time. My BONE pain (related to my mets), is another story. But that is currently at bay as a result of my treatment. So, again, I say... it is easy to have "happy juice" when we have limited side effects or things that decrease our functioning. With that, I want you to know I see you. I hear you. And it helps me stay really present in terms of the fact that many people with MBC don't have a lot of things that feel "happy" about their current life. As for doctors that don't have the answer, I know something about that. Or suggesting it is in our head. That is unforgiveable. Rule out medical before you go there (i.e., mental health). Standard approach. Thinking of you. And sending support your way. ~Mary Cos (Team Member)
lumpie Member

Mary, Thanks for your words of support. We surely do have ups and downs with this disease. Just to be extra clear, my issue is not with those who are doing so well or have a lesser burden. I am truly happy for them. My issue is with the advertisers selling an extremely optimistic image of how insignificant the impacts of this disease "should" be for us. (Cringe! Not the "should" word!) Here's why: Some of us will roll our eyes and dismiss it as another advertiser depicting a best case scenario. Others may find it hard to resist measuring themselves against this standard and will feel that they come up wanting.... even if our logical brains know that this is not realistic. I count myself lucky because I know that many are hit far harder by side effects than I have been. Even on my bad days, I feel like life is still worth living (except for that one really bad day...). I simply wish we all felt (and looked) as good as the people in the commercials all the days we have left. That only seems fair. So... here's a take away for anyone who is having a bad day and tempted to be critical of yourself: "No beating up on my MBC friend {insert your name here}!" If it's at all helpful, dear reader, tape it to your mirror or your calendar or your tube of toothpaste and repeat whenever you need it. May your days be many and your quality of life as sunny as those commercials. 
1. Shayla.Oakes Community Admin
 
 <inline-mention username="lumpie" user-id="2340621"/>, I have always felt that these commercials display an inaccurate depiction of those living with cancer or any chronic disease. These commercials give those on the outside looking in a false sense of understanding of what those who are dealing with cancer and chronic disease are going through. Most managing illnesses already deal with so much stigma and commercials like these do not help. Thank you for sharing your thoughts with us. Hugs, Shayla (<a href='https://advancedbreastcancer.net' target='_blank'>AdvancedBreastCancer.net</a>, Team Member)