Cognitive Dysfunction & Cancer Treatment: Old News

To all the compassionate, skilled physicians and oncology clinicians I have come to know online and in real life since becoming a member of the cancer club, let me just say thank you. You know who you are. You are not the ‘my-way-or-the-highway’ practitioners. You are the ones who actually listen to your patients; ask open-ended questions; factor quality of life issues and patient concerns into treatment recommendations; believe in informed consent and do your best to fulfill it; and give advice that allows your patients to make their own decisions.

But every clinician in the oncology world does not behave in such an exemplary fashion. I know, because I was treated by a few of them. Perhaps I owe them a certain debt of gratitude nonetheless, because the fact that they ticked me off so much is one of the things that turned me into a blogger and an even more staunch patient advocate than I already was.

So, what’s my point? Well, one of the hot topics at this past week’s San Antonio Breast Cancer Symposium was the cognitive impairment that many of us experience after treatment. There appeared to be two main items in this discussion. The first was the news from the previous week of a study showing that chemo brain can be seen on PET scans. This study made a big splash, including one report that featured an interview with my friend and tireless cancer advocate Jody Schoger. There’s a great write-up about this by another sistah, journalist Xeni Jardin, including links to Jody’s interview, here on BoingBoing.

But the second issue that emerged from the SABCS discussion was the potential implications of broadening the discussion of post-cancer-treatment cognitive dysfunction — and perhaps calling it something besides ‘chemo-brain’ — because it affects many of us who did not have intravenous chemotherapy. A report on this latter discussion was published in Oncology Times. I feel a little torn about this. On the one hand, whenever I see cancer related cognitive dysfunction discussed, I often seem to be the person who tediously points out that I have it myself, even though I did not have IV chemo. So the phrase ‘chemo brain’ doesn’t technically apply to me, which leaves me in even more limbo than the one in which my slushy brain has left me. On the other hand, there’s so much we don’t know. For purposes of research and treatment, perhaps we do need a name for the general category of cancer-treatment-related cognitive dysfunction. But we also need a better understanding of — and perhaps more specific names for — the mechanisms which give rise to it, and the differences in how the various forms of cognitive dysfunction manifest themselves. There may be damage arising from chemotherapy that is different from that arising from radiation or surgery, for example, that needs a different name and a different solution.

And then, I thought what I always think after reading about another study that identifies another form of collateral damage: ‘Okay, great. What the heck are we supposed to do about it?’ So I was even more interested in a study published at the end of October in the JNCI called, Treating Chemobrain: Rehabilitation Therapies Emerge. But the thing that most struck me, when I started to read the article, was this paragraph, especially the last six words:

Patricia Ganz, M.D., at UCLA’s Jonsson Comprehensive Cancer Center, traces several stages in the evolution of thinking about cancer and cognition. At first, everyone believed that the blood–brain barrier protected patients from chemotherapy, so patient reports were not taken seriously.

Dr. Patricia Ganz is one of my sanity-saviors. It was reading a study conducted by Dr. Ganz and her colleagues, about the immune system biomarkers associated with cancer-related fatigue, that helped me endure and find help with my own fatigue. Dr. Ganz, if I ever meet you in person, please forgive me if I am moved to break into tears and give you a heartfelt hug. You are one of my research goddesses. And I’ll probably have to give you another hug for reinforcing the eminently crucial notion that patient reports need to be taken seriously. “We are chipping away at getting a scientific database to persuade people,” Ganz said. Yes, you are, Dr. Ganz. And bless you for that. To the doctors who did not do their jobs by informing me before treatment of its possible long-term effects, or listen to me afterward when I was suffering from them, here’s a virtual bitchslap and a link to an old post that summarizes the needless misery you helped put me through: Losing It And Trying To Get It Back.

Which brings me to the next thing that bothers me about all this: it’s old news, people. I realize that a certain amount of replication and informed skepticism is crucial in the oncology research world before any of us should permit ourselves to get really excited about any new findings. This week’s other SABCS kerfuffle — about the ATLAS/tamoxifen study — is a case in point. A great blog post by Beth Thompson sums it up here: ATLAS, Shrug. But it annoys me hugely when study results about a given topic are touted by hype-headlines as though the researchers have discovered a new planet. And cognitive dysfunction is just such a topic.

Way back in 2008, which I realize is practically the Pleistocene Era, a study about chemo-brain was published which included the use of radiologic imaging to verify the existence of chemo brain. The study, Clinical Patterns and Biological Correlates of Cognitive Dysfunction Associated with Cancer Therapy, not only imaged these changes in patients who’d had chemotherapy or brain radiation. The study authors also sought to explain the mechanisms of neurotoxicity associated with cancer treatment, and to identify the patterns of cognitive dysfunction they found in cancer patients. 2008, people. Am I the only person who read this?

Another study, published in 2009, sought to examine the impact of chemo brain and cognitive dysfunction on the lives, work and future health of cancer patients. Its purpose was to help encourage better identification of the problem and better solutions for helping us all cope with it. Maybe 2009 is late Pleistocene/early Holocene. Maybe we’ve all got short memories. Maybe I’m the only demonic nerd that trolls Google for pertinent scientific journal articles when I’m writing certain blog posts. Maybe I should rent my search-maven skills to other clinicians.

Whatever. Bottom line? The fact that cancer treatment scrambles our brains isn’t news. Despite our admitted deficits of concentration, word-finding, and short-term memory, we cancer patients have been saying this for years. Listen up, already. You might learn something. You might even come up with a way to help us.

This entry was written by Kathi, posted on Saturday, December 08, 2012 at 02:12 pm, filed under Cognitive Dysfunction & Depression, Radiation, Research and tagged , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

23 Responses to “Cognitive Dysfunction & Cancer Treatment: Old News”

  1. I read a suggestion that chemo brain is changed to ‘cancer brain’, but I do hope that doesn’t catch on – I have the same distaste for cancer brain as I do for headlines reading, “cancer boy”. Slush brain sounds much better.

  2. I’m rather partial to Slush Brain myself. The name, of course, not the condition. 😉

  3. Thank you, Kathi, for discussing and reviewing the topic of cancer-treatment-related cognitive dysfunction~ chemo-brain. Doctors have known about it since the 1970’s… so, why are they pretending this problem is something new?
    Years ago, a friend, who had been through many rounds of cancer treatment, sent me a long list of side-effects caused by radiation treatment; bones, teeth, hair, skin, fatigue, chemo-brain, neuropathy, etc. Doctors, in general, do not like to discuss or admit the long-term side effects; and when we confront them, the attitude is “we should feel lucky to be alive”. There are no cancer treatments without side-effects. I’m not sure f I would have had chemotherapy and radiation, if I knew how it would destroy my quality of life.

  4. Kathi, you have summed it up beautifully here – and don’t stop “trolling” for appropriate research – we need informed and eloquent voices speaking the truth. Thanks for a great post. Beth

  5. Thanks, Beth. Thank you for ATLAS, Shrug. PERFECT title. 😉

  6. Kathi….

    I am home and now I can tell you EXACTLY what happened in San Antonio. First of all, because of my (ahem) chemobrain, I had the good sense to record the session on my trusty iPhone. More details to come…..In my case, I KNOW the chemo caused a good portion of the slush brain…. But, there are a whole mess of other things that added to the problem…

    I got the links…. I’m a research whore….. Gotta figure out how to get that into my “persona” … And, I’m Dick Tracy. I’ve got plenty of good questions…..

    We should all plan to flashmob “Patti Ganz” (as she introduced herself at the microphone to question the validity of the research!!!)


  7. I adore her, AM. She’s has the sense to pay attention to us. And try to validate our experiences.

  8. Please not “slush brain”, it seems to trivialize and make cute a condition that is neither. I don’t have a replacement name but please let’s think of something substantial. I am tired of being marginalized and ignored unless I am actively in treatment.

    And here, I think, is part of the problem, this overweening thought that we should be grateful to be alive at any price because we had cancer… Cognitive difficulties, stop complaining, neuropathies, stop complaining, joint pains and vaginal dryness, stop complaining, you are alive, for God’s sake, we fixed you.
    Medics find us embarrassing because somehow if the word gets out we make them look bad (in their minds) remember the old joke “the operation was a complete success, but the patient died”. And the rest of the healthy world doesn’t even want to admit that we really did, and still do have cancer “but it’s gone now, right? They got it all, right? So why don’t you want to go out and party tonight after a 10 hour day? And why do you always complain of being tired, it’s ridiculous you have to only work four days a week, I’d like Wedsnesdays off too.” and they forget you tell them you slept most of Wednesday, and slept all Thanksgiving because you worked the Wednesday and three days is just too much.

    And what are they going to do with us, employers would go crazy if we all had partial short term disability forever, and I stopped all my adjuvant therapy after it ruined my vision, I can’t use an ophthalmoscope any more, which is a challenge in Neurology, and I couldn’t walk or pick anything up because of the joint pain and my hair fell out in handfuls and the vaginal atrophy made it painful to pee. I stopped the Femara and then stopped the Toremefine/Fareston, sister to Tamoxifen, which is about to be relaunched as a wonder drug, went back to Femara and finally quit because I didn’t recognise my patients half the time, and didn’t remember much about half of the ones I did recognise without the charts. I hada prodigious memory, but I can’t trust it any more.

    So slush brain is too cute for the cognitive changes ruining my life courteous of radiation and less than six months of adjuvant oral hormonal chemotherapy without IV chemotherapy. I can’t think of another name, you’ll have to excuse me, I have cancer and too much radiation, and no estrogen any more.

  9. Anne, believe me, I’m being facetious about using the phrase ‘slush brain,’ out of a sense of frustration. And your comments are unfortunately very apt. I’ve had friends tell me that their oncs have literally said, ‘What do you want? We did save your life,’ when they’ve reported side effects after acute treatment is over. Your experience of radiation and anti-hormone is very similar to mine. And yes, my own status is partial disability for the forseeable future, because I’m not up to full-time anymore. How long ago was your treatment? I’m four years out & still struggling; my brain is working somewhat better, but certainly not like it used to be. I’ve had to live on neurostimulants for the fatigue and brain fog and poor concentration for a very long time, however. I don’t know what we should call these problems, but more importantly, we need to be warned about them before treatment, and they need to be acknowledged, prevented if at all possible, and certainly we need better options to relieve them.

  10. Thank you! I saw my oncologist Friday and, once again, he dismissed my questions about neuropathy, fatigue, and memory loss as “collateral damage” for which there is nothing he could do. But then the clincher–“maybe it’s something to do with your age.” I usually leave with a feeling that ‘hypochondria” is really what he’s thinking. It’s validating to read your blog and feel that I am not alone in my concerns.

  11. Helen, there’s a lot more to write. Check my blog categories on the sidebar & click on one for former posts.

    Some of my patients have had really good luck with L-glutamine supplements for neuropathy. It’s an amino acid. You can get it OTC or online in capsule form. In research trials, people took 10 grams 3x/day during chemo. But it can be hard to take that much daily and folks seem to notice relief on less than that. This is a good summary: This is a more complete write-up with side effects info:

    You can easily get 1000 milligram capsules. 1000 mg = 1 gram. Let your doctor (whichever one you choose) know you are taking it to monitor for side effects or interactions.

  12. It took several years but those close to me now acknowledge, and work around, my damaged brain. At first, they just all thought I was ‘using’ chemobrain. After seeing me shed tears because I couldn’t remember something, or having my forgetfulness affect them in some way over the years, they started to get it. And most have seen me shed tears….even at work. Just last week my Boss said: “Don’t you remember…..?” Then he hesitated. He was asking about an email from seven months prior. Are you kidding me? Here, let me just look that up.

    My cognitive memory is severely diminished. I am so glad that this is finally being seriously talked about and researched. It’s very real and for me it’s debilitating. I hope they can find a way to avoid it for others.

  13. I forgot to thank you for the post, Kathi. :-/ Thank you!

  14. Thanks for this post and the links with it, you research maven. Your words touched some of the functioning nerves I have left.

    I felt terribly abandoned by my oncologist after I finished chemo. Mine wasn’t interested in hearing about any arising and ongoing side effects from chemo/radiation/arimidex/tamoxifen. It was as though he felt he had done his job by following the treatment protocol with me and now I was on my own.

    I’m almost at 3 years since completing radiation and while I don’t feel 30 years older than I am as I did for a couple of those years, I do feel about 15-20 years older than I really am and that’s an insult to those 65-70 year olds who seem younger than me.

    I don’t talk much about the fatigue and brain-slush I still feel because too often colleagues, family, and friends will say something about it being “a part of getting older just like everyone else” including them, which really hurts. They just don’t get it … that I need more sleep than they do. And sometimes it’s not just sleep … I just need stillness and quiet. I have felt quite abandoned by the medical community since I finished radiation. They don’t want to hear about side effects and difficulties. They don’t want questions and If they record my symptoms, so what? What does it matter if they’re not interested in addressing them? And I, too, am especially resentful about not being told about the possible side effects. Well, I was told that I would lose my hair and that I would get hot flashes but what about all those other things. When I started having severe joint problems after starting Arimidex, I thought it was from the edema that came with my last chemo treatment and about the same time I started Arimidex. There was no documentation about terrible joint pain on the Arimidex box nor on the sheet of information about the drug that was given to me. “Possible joint pain” was listed as a minor and uncommon side effect. Mine was severe. I could hardly walk or dress myself. When I told the doctor about it, he just shrugged. After my edema subsided and I could still hardly move, I knew something else was wrong and it was only through my own research that I found information (mostly in breast cancer forums) about the horrible joint/muscle/tendon/ligament pain and stiffness women were experiencing while on Arimidex. I then went to my oncologist with this information and it was obvious that he had heard this before but why did I have to find the information myself? Why wouldn’t he have told me when I first told him about the severity of my joint problems? My reaction was bad enough that I had to quit Arimidex and go on Tamoxifen, which I delayed hoping to get rid of the joint problems before starting another drug. I was told I should feel better in a couple of weeks. I didn’t feel any improvement until almost 10 months later and I my joints have never improved fully. I started Tamoxifen regardless and I don’t know now if it’s part of my joint problem or if the effects from the Arimidex have become permanent. My oncologist and doctors have no thoughts on this. My sense, as you’ve mentioned, is that they think I should just be glad to be alive. I am … but … well, you know.

    Your post and your comments ring true for me and, just like the time I first found a research article declaring “chemo-brain” a reality, it helps me feel validated and less alone, which is so important.

    One thing worth trying if people haven’t already and something that has made considerable difference for me, is powdered greens. I tried a sample pack on a whim about 8 months ago and the effect was astounding … both immediate and huge! I suddenly had an energy I hadn’t experienced since before cancer. My brain felt less foggy. I could multi-task a bit, which I couldn’t really do since cancer and that’s something that was a big part of my work-life pre-cancer. I felt like doing things … shopping, socializing, housecleaning … I didn’t have to force myself. My joints, which were in bad shape after a particularly bad reaction to Arimidex, improved remarkably. And amazingly, I even got feeling back in my feet. Not all of it but a lot of it. Since I lost the feeling in my toes and the fronts of my feet after chemo, I fall down on an average of 6-8 times per year. I would fall on a flat, dry surface while wearing very sensible footwear if I wasn’t paying very careful attention to each step I took. Since including powdered greens in my day, I haven’t fallen once in the whole 8 months. The feeling in my feet came back within 3 weeks. About 5 days after starting the greens, I had a night where my feet were so relentlessly hot, I hardly slept all night. I was awful. I had 3 nights like this over the course of 2 weeks. After the 2nd incident, I noticed the next morning that I could actually feel my feet while I was walking from the parking lot to my office. It felt amazing. And it improved again after the 3rd night of hot feet. Why? I don’t know. I can only guess that whatever the greens provided increased my circulation and maybe the oxygen to my extremities … my brain and feet? I don’t know. I’m not a scientist. But I wish a scientist/researcher would listen to my experience and wonder about it.

    I still have my brain-slush, fatigue, joint stiffness, and a bit of numbness in my toes and feet but the improvements after taking the greens have been dramatic nonetheless. Only since the greens have I ever had days when I haven’t even thought about cancer. And that has been a blessing.

  15. Wonderfully written. Thanks so much for this. I think doctors and oncologists so often overlook the side effects of cancer and its treatments. But, the side effects are obviously so real for all of us who are experiencing them.
    Thank you so much for speaking the truth — and for doing it so eloquently!

  16. Thank you, everyone.

    Traci, my friend, big hugs to you. It’s so frustrating, I get tired of having to remind people that I have to pace myself very carefully now. *sigh*

    Heather, yes, yes, yes!!! I can so relate to everything you said. I definitely feel better now than I did last year and 2 years ago and 4 years ago, but my concentration is finite. When I have to stop, I have to stop, and that’s that. And yes, quiet, stillness and sleep are what I need. No getting around it. Officially, I work 4 days a week now, not 5 anymore, but I end up having to spend the equivalent of 5 days getting 4 days worth of work done. And yes, I get sick of people trying to write it off by saying it’s because ‘we’re all getting older.’ Four years ago, before I was diagnosed, I was a ball of fire. People don’t ‘age’ 20 years in just four years simply because of the passage of time. Bollocks to that, I say.

    AIs were not even recommended for me because of family osteoporosis history, but I couldn’t stay on tamoxifen either. I lasted a year, and took a ‘vacation’ from it because of a med interaction I was trying to work out, and discovered that it had been adding a whole nuther layer of brain fog, pain, and fatigue to what I already had. My med onc thank goodness agreed that it wasn’t worth staying on for a single digit decrease in my recurrence risk, when my quality of life and my ability to earn a living were being so adversely affected.

    LD, thank you. We need smarter treatment options with less collateral damage. And, yes, we need to be told the truth beforehand.

  17. I wish I knew if Tamoxifen could be the culprit in some of what I feel (or don’t feel). It’s been so long and I’ve been through so much, I hardly remember what “normal” feels like and whether the side effects I have are lingering effects of chemo and radiation or Arimidex or now Tamoxifen … or a combination of all of the above.

    I’ve been excited about having a little less than 2 years left on Tamoxifen so that I can see if some of my “issues” disappear or improve. And then came the news that 10 years really is better than 5 on Tamoxifen. I have mixed feelings about that and didn’t greet the news with the elation that people expect me to feel.

    Breast cancer is a TOTAL drag. I’m happy to still be here but that doesn’t mean I haven’t lost a lot during the battle.

  18. Heather, it really isn’t clear that extending tamoxifen for 10 years is right for everyone. It’s not a given, not for a 2.8% increase over taking it for 5 years. It’s something to consider very carefully and talk about rationally with your doc.

  19. Kathi,

    Dr. Ganz sounds wonderful, and I’m sure there’s a place in heaven for her.

    You are right: cancer-treatment brain (sounds kind of stodgy, but I like this name because it covers the whole gamut of cancer treatment) is old news. We patients have said it for years. There are many doctors who deserve that “virtual bitchslap” for being so dismissive.

    I struggle with cancer-treatment brain every damn day. And to add insult to literal injury is when people say, “oh, don’t forget that you ARE getting older, and memory fades with age,” or “you are menopausal.”

    No, No, and emphatic NO.

    All I know is that I was sharp as a tack the minute before that toxic shit dripped into my veins, and cognitive dysfunction happened post-treatment until now….and beyond I’m sure.

    Thank you for validating what we patients already know.

  20. Beth, as I said on my blog FB page yesterday, it’s like having a recurring concussion, NOT like ‘normal’ aging. People who don’t have it don’t get it. Sigh.

  21. Kathi!
    I forgot to check back until now, and forgot to check the reply box. I did know you were being facetious about the name but these things have a way of sticking. Yesterday it was two years since my diagnosis, and I’ve been treatment free for about 14 months. I still need prodigious amounts of rest and my joints seem better and then so much worse. I’m wearing a wrist brace at the moment as my left wrist suddenly feels like a horse stepped on it. No known insult, just woke up that way a few days ago.
    As for the cognitive changes, the latest research alleges that chemo patients show the cognitive changes before starting chemo, thereby proving it isn’t the drugs just anxiety and fear. Someday I will meet some of these researchers and all I can say is it will not be pleasant for them. Why would you want to look at that? And how do you control for that, and what are your confounders. I can do and read research too. It’s unbelievable the trouble to which well doctors will go to somehow make it the cancer patients’ fault if we complain or fail to be completely cured.
    I’m in the NAD holding pattern, feeling very somaticized with my aches and pains this week, my affected breast has complained for two weeks, edema and post radiation spikes, but I am glad to be alive, and my grown children, in their 20s and one who is 30 still seem to need me if only to have someone to worry!
    Best wishes for an ever better new year, better research, better studies, better meds, better cures and happier lives.

  22. You are right on, Anne Lynn, about some of the root causes of cognitive changes. When I began trying to find research about this and about cancer related fatigue, I found some interesting studies, some headed up by Patty Ganz, about biomarkers found in our immune system and our endocrine system associated with long-term physical changes following a cancer diagnosis. The latter endocrine studies pointed to stress responses that mimic those found in people diagnosed with PTSD. My initial response was vindication, quickly followed by anger that my docs misled me from the get-go and brushed me off when I asked for help.

    We need much more research into this, and much better treatment options that minimize the collateral damage. Hope we all have a better year. xoxo

  23. Thank you for this resource. We are doing more and more work supporting those experiencing cancer, its treatments and side effects. Some of our clients have been very enthusiastic about the information contained in these pages. Thanks again. Linda

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