Considering refusing chemo because I fear "chemo brain"
HI there, I'm looking for advice. My oncotype score came back at a 27, which has put chemo on the treatment list for me. With radiation and hormone therapy alone, I have a 14% chance of recurrence 10 years out. Adding chemo will bring that percent down to 7%. At first, I decided that was enough for me to go ahead with it, which is 4 treatments of Taxotere + Cytoxan over 12 weeks.
Now, I'm not so sure. I'm the primary financial support for my family. I'm also a computer programmer working in Finance. Our company is going through a lot of changes and I'll need to learn new systems and new data. I can't afford to lose my job because I can't think straight. My employer is very supportive, and I'm not too worried about chemo brain during or shortly after my treatment. Dealing with it for a few months is okay, but I can't afford to be permanently impaired. I'm very serious when I say that without my ability to work, we lose our house and everything that brings joy in my life.
The threads on these forums titled "chemo brain" have me both terrified and convinced that I will end up with long-term cognitive problems if I go through chemo. This now has me thinking that a 7% reduction in my chances isn't worth it.
I've read plenty of accounts of people struggling with chemo brain. I don't need more. What I'm hoping to hear on this thread is a little balance. Does this happen to absolutely everyone? Articles state that only 15-20% of patients have long-term problems, though the statistics don't tell you if those problems are severe or manageable. And mostly, people are talking about day to day tasks. I'd love to hear from people who have jobs that require a high level of cognitive skills, who need to function in meetings, need to learn new systems.
Thank you in advance for anyone able to help me with this very difficult decision.
Comments
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It is true there is a balance. From an oncologist point of view they tend to focus soley on the cancer and doing everything and anything to prevent it. But whether chemo, targeted, or hormonr therapy these come with a cost. For me my dx is similae to yours 2 one centimeter tumors, 1 ILC 1 IDC grade 2, er 95% + pr -(less than 1%), oncodx 34. I chose no chemo and did 4 years on AI drugs. Those AI drugs did a number on my health. I am 5.5 years out NED. Some would say I took a risk not taking chemo but I think I did the right thing.
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I was a software engineer at a large aerospace company toward the end of my employment the AI drugs had caused me such severe fatigue I could hardly work anymore. And I exercise everyday but it didn't help. Now that I am off the medication my fatigue has gotten better.
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In my opinion the AL's are more difficult than chemo. The chemo effects for me were temporary.
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I did chemo while teaching full time in a pretty high stress special education classroom (I also was a mom, was dealing with an elderly parent, and had a couple other 'things' going on at the time. I had no chemo brain then or no bad after effects related to it now 10 years later. I also did 5 years of Arimidex with no cognitive problems from that either. Bad things can, of course, happen with any treatments; but your first concern is that you KILL the cancer cells and are ALIVE to deal with the rest of it. Best of luck with your decisions.
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Yes, a very personal decision and so important to weigh all the pros and cons. We're glad you found our community and hope you make a decision that you can feel comfortable with.
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Hi Loribee,
Here's a couple more articles on chemo brain, you may have seen these already though.
http://www.breastcancer.org/research-news/chemo-br...
http://www.breastcancer.org/research-news/anthracy...
What I've gleaned from looking into this for myself, is that there are generally several things that factor into how much/how long chemo brain affects someone. As the articles above say, things like type of chemo regimen and age of patient.
I'd look at those things and discuss them with your doctor. And as encouragement, you are being recommended T/C chemo which tends to not cause as much chemobrain. I had pretty bad chemobrain when I did chemo, but I had Adriamycin, which is shown to cause it more often. 3 years out I still have some cognitive issues, but nothing that interferes with getting important things done.
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I can't thank you enough for the feedback. This is very valuable to me. As a data analyst, I know to take with a grain of salt accounts that come from threads titled "Problems with Chemo Brain" or something along that line. Not that I dismiss the accounts, but that most likely, the thread will be dominated by people having a similar problem. It can give someone on the outside a potentially slanted perspective that this is everyone. It's why I intentionally titled this thread as I did. I would like to get a more balanced perspective, if that's possible. For sure, I don't want to make a decision based on a relatively small percentage of extreme cases. Your input helps.
And yes kcat2013, I had seen those articles and found them very informational. It seems from the statistics that 15-20% of breast cancer chemo survivors suffer long-term cognitive problems. That's big, but not huge. I guess we are rolling the dice no matter which decision we choose, eh?
In addition to my job, I am also sensitive to this subject because my mother suffered from dementia after having open heart surgery, and it destroyed her quality of life to such an extent that I didn't even mourn her final passing. To me, the "woman who was my mother" died years before. The decline was horrible to watch, and the thought of being there myself would be terrifying. The stress of that alone could prompt a cancer recurrence, IMO.
Quality of life after cancer is a big deal to me, big enough to take chances, but it's something that has to be weighed. It's just a shame we can't have crystal balls that let us see the outcome before we make these life-altering decisions.
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Hi!
I teach at a research university. I taught through chemo and radiation, and continue to teach while on an AI (Aromasin). Do I feel cognitively impaired? Not really, but every now and then my brain reaches for a name and draws a blank. I try to compensate by bringing detailed notes to class with me, so that if I forget a name or two, I can just look down at my notes.
I've also continued on my research trajectory, just at a slower pace.
Best wishes!
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I had chemo as well and I don't feel I have or had chemo brain. I'm with the Elaine where the brain reaches for a name and draws a blank at times, but in all honestly that was going on before chemo so I can't blame it. I am nearly 3 years out and I haven't suffered any ill effects from chemo and doing chemo (as much as I didn't want to) has given me piece of mind that I have done all I can to beat this crap. As far as an AI I am not on one, but am on tamoxifen (no ill effects there either). My onc wants to switch me to an AI at the 5 year mark. She also said I could stay on tamoxifen for 10 years if that's what I'd rather do.
Nancy
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I did 4 rounds of TC chemo last summer and radiation in the fall. While I was tired and run-down June-Dec, I was able to work as a medical professional the entire time, with minimal time off. I participated in a study to find out if occupational therapy can help with chemo brain, and the occupational therapist determined that I really suffered no chemo brain effects afterwards. I really didn't do any occupational therapy, as I never had any symptoms of chemo brain, just a pre-chemo session talking about how to organize your life to keep things manageable, and a follow up, many months after chemo was done to determine if I had any problems. I think I was mostly just exhausted and stressed during chemo/rads times, worried about myself and my young kids, and my work, too. I think now, I feel a little more ditzy, but I think it's more about anxiety/PTSD, and also focusing so much more on what is important in life, and letting the stupid stuff go. I'm fairly confident my work is at the high standard it has always been. Things are finally feeling back to normal, and all is well. You can do it.
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I just wanted to add I did not do chemo, but have work friends that seemed fine after treatment. For me fatigue and forgetfulness was a factor taking AI drugs. The effect seemed cumulative but now that I am off I probably could work full time. I think my cognitive skills are in tact. Memory is not as good but age is also a factor.
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Thank you so much for these positive reassurances. Honestly, when I talk to friends and read forums on the internet, I'm having trouble finding one solitary person who has gone through chemo/radiation/hormones and will say that their life is as good as it was before cancer. The best I can get is maybe 80%. And prior to this diagnosis, I had weight loss goals and had wanted to get myself in shape. Now I'm hearing about weight gain, nerve damage, loss of mobility, loss of my senses. I'm having a really, really hard time feeling like chemo is worth it. I mean, I understand when people say "you're alive". But define "alive". Fat, broken, run down, unable to work or do anything I enjoy. That doesn't sound like being alive. (Sorry, I'm having "a moment" right now after doing too much internet searching.)
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Lori, how old are you?
I am in the same industry as you are and doing things very similar to what you are doing. I worked while on Chemo, got a promotion while on chemo and work was actually a good distraction for me. I have continued working full-time after chemo, have more responsibilities than before and trust me, have absolutely no brain impairment.
So if I were in your shoes I would not tie the decision to have/not have chemo to brain impairment but base it on medical considerations that you should discuss with your oncologist.
If you have any specific questions please feel free to PM me. -
it's funny how we bargain with just tiny stats. I was a 20 oncotype, same 14% as you got. My chemo benefit was 3%. Risks from chemo typically total about 3%... so no net benefit. In addition, those risks don't take the permanent balding issue of taxotere or chemo brain - or personal health considerations like if you have a propensity to skin cancer like I do, etc... chemo can cause skin cancer. So the real question is... does a 4% potential benefit (7-3) make it worth it to you.
I'm not sold that chemo is universally helpful for all cancers. I believe some cancers actually benefit from chemo (google luminal A cancer stem cells and chemo). So you have to look at your type if cancer, your risk of other cancers that only your immune system is keeping control of., balding, heart conditions, permanent neuropathy (a cellist refuses chemo because her fingers may stop working).. is that all worth 4%?... I'd say no, but you may be different.
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My life even better than before cancer; and it was pretty good at the time. It's hell getting through it (no matter what treatments you choose or don't choose), it takes time to recover both emotionally and physically (more time than you will want to give); but you can come out on the other side and be really, really okay!
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Muska, thank you for that. I so appreciate it. I'll be 55 next month, and like you, so far I have been finding work a great distraction. It is almost entirely computer-based, and I am set up to work at home as often as I'd like. Because of this, and the great support from work (my boss is also dealing with cancer and understands) I had goals of working through my treatment, only taking off a couple days here and there around infusion days. I can take days or half days off on the fly if I need it, as I expected my only "disability" to be what my oncologist said: Generally feeling a little crummy and being tired. I can handle that. I've gone so far as getting a house cleaner and gardener to come in to relieve me of most chores, so when I'm not working, I'm resting or enjoying my family. My husband and son are self-sufficient and a great support.
My oncologist had said that everyone needs to place priority on what matters to them. For me, the priority is my job, so I'm working on the other areas of my life to allow that to happen. It was going to be okay. It was just all these accounts of chemo brain, people saying they can't even balance their check book and get lost driving to the store, that sort of slapped me in the face.
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Well, I'm not sure you want another test (as you've already done Oncotype). But Mammaprint can also tell you whether or not you would benefit from chemo. Just a thought.
As someone who had a big lump (5 cm+), that was very aggressive (HER2+ and Grade 3), chemo was a "no brainer" for me. For someone with a small tumor and no nodal involvement, chemo probably sounds like overkill. I can understand your reluctance to get chemo for your case. Best wishes!
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Boy, I really appreciate all the input here. Ruthbru, thank you for letting me know that not everyone has to come out of cancer worse than they were going in. Up until I heard chemo, I had been taking this as motivation for making some positive lifestyle changes. What better motivation to lose weight and get myself in shape than a cancer scare? Now the doctor put chemo on the table and my positive outlook kinda went down the toilet. And searching the internet for information only seems to make matters worse, not better. It's encouraging to know that it's not guaranteed to be that bad. Definitely, there is a shortage of good stories out there. And trust me, I'm not Googling, "Tell me how bad chemo is"
Though, as others have said here, I need to keep thinking this one over. I agree that I feel like chemo is overkill. My ER+ score was 99%. It seems to me that's a good case for the hormone therapy being most key. I work in insurance, and I can't shake the idea that doctors throw the whole medicine cabinet at you because they don't want to see a lawsuit down the line and have their insurance go up. But maybe that's just me trying to convince my way out of chemo.
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Hi LoriBee:
Your profile information is not internally consistent, making your diagnosis unclear.
Were your lymph nodes completely negative (per the profile information "0/1 nodes")? If so, then you would appear to have Stage IA disease (pT1 N0 M0, where T1 can be any one of T1mi, T1a, T1b or T1c). Please confirm it with your team.
Or did you have a micrometastasis in a lymph node (per the profile information Stage IB)?
Note that Stage IB requires a particular level of lymph node involvement (i.e., N1mi), as shown in the chart in this AJCC staging summary (7th Edition):
AJCC summary: https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf
pN1mi Micrometastases (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm)
Those with Stage I, node-negative disease and a "T1b" size tumors (T1b = tumor > 5 mm but ≤ 10 mm in greatest dimension) often mistakenly confuse this T size designation with stage.
Also, if you have a copy of your Oncotype report, please advise what is the title of the report on page 1 and what is the title of the first graph on page 1?
(a) Report Title: Node Negative Report;
First graph: "Prognosis: 10-Year Risk of Distant Recurrence After 5 years Tam, Based on the Recurrence Score Result (NSABP B-14)"
OR
(b) Report Title: Node Positive (1-3 N+) Report;
First graph: "Prognosis and Chemotherapy Benefit: 5-Year Risk of Recurrence or Mortality After 5 years of Tam, Based on the Recurrence Score Result"
If you don't have copies of the pathology reports from all biopsies and surgeries or your Oncotype report, please obtain copies as soon as possible.
If you have Stage IB disease, that means there was node involvement (N1mi), and a second opinion may be helpful.
BarredOwl
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Lori, if you are asking whether chemo brain risk should be the deciding factor in chemo/no chemo decision at 55, with no serious physical or mental issues and with the chemo agents you were prescribed my answer is no. Generally speaking, what is often labeled as chemo brain is a combination of symptoms resulting from fatigue, stress of treatment, emotional distress that comes with the diagnosis, some drugs that are often given together with chemo and chemo agents themselves don't make you feel better. Of course younger women - and you are relatively young by BC standards - will do better than someone who is 15-20 years older and is starting to have age related concentration and memory issues.
It seems however, that you have another question on your mind and that is whether you need chemo to begin with. That should be discussed with your oncologist, maybe you need a second opinion. If the recurrence risk numbers you listed at the beginning are correct they look pretty convincing to me. You need to plan for 20-30 years ahead without breast cancer and it is quite reasonable to get more treatment now while you are still young and healthy if medical professionals believe the treatment you get now will help you down the road.
Speaking of the brain impact my concern would be more about brain mets than chemo brain.
Editing to add an interesting link, note that some people who didn't have chemo but went through cancer diagnosis and treatment complain about the same chemo brain symptoms. Chemo Brain Study
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BarredOwl: Thank you for the information. I wasn't sure of stage. They'd only said Stage 1 so I was just guessing. No, they only took one Sentinal Lymph Node and it came back clear. I have updated my profile to Stage 1A.
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Thank you muska, that is helpful. My oncologist is recommending chemo. In her opinion, someone my age with a Recurrence score over 25 is her threshold for recommending chemo. The fact that mine was only two ticks above that makes the decision harder. I really do trust her opinion, and we have a follow-up meeting on Monday to discuss this further. She's very well regarded and part of a well respected medical team that do peer reviews of their cases. In a sense, she gets several opinions before she even talks to me. My initial reaction--while devastating--was to go with chemo based on her recommendation. My thought was, suck up one shitty year to have the peace of mind after.
It was only after I started reading forums, blogs and articles, asking friends who have been through chemo, things like that, that I realized how many very serious and long-lasting side effects the treatment can have. Almost everyone I know who had only radiation/hormones said it wasn't bad and 20 years later they are going strong and living like it never happened. On the contrary, I can find very few (literally only the one or two on this thread) who have said the same about chemo. That seems to be the threshold between coming out of it strong and healthy and coming out of it beaten up and never the same. It started making me wonder if I should reconsider.
I know this sounds WAY dramatic and I'm not normally a drama queen, but it gives me this sense that "these might be the last 4 weeks I ever feel good again".
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Hi LoriBee:
Do you have a copy of your Oncotype report? If not, be sure to request a copy for your review and records on Monday.
I note that with a node-negative (N0) report, the "10-year risk" with Tamoxifen alone is a 10-year risk of Distant (metastatic) Recurrence.
I agree with Lisey that if you have a node-negative report, and a Recurrence Score of 27, then a 10-year risk of distant recurrence with Tam alone of 14% does not seem to make sense.
Lisey's node-negative (N0) report for a Recurrence Score of 20 shows a 10-year risk of 13% (see top graph and "Tam Alone 13%" printed to the left of top graph):
https://community.breastcancer.org/forum/147/topics/842209?page=3#post_4768140
Recently, one node-negative member with a Recurrence Score of 26 reported a 10-year risk of 17%.
In 2008, another node-negative member with a Recurrence Score of 27 reported their 10-year risk as 18%.
The exact same test and data were used in 2008 as today, so your 10-year risk should not be different from another node-negative person with the same Recurrence Score. In view of this inconsistency, please confirm the information in your post.
Sometimes an assistant types test results from an original report into your medical record, introducing typographical errors (which is why one should request a copy of the original report).
On Monday, when you meet with your oncologist, please ask her to retrieve your original report and to confirm your Recurrence Score (27) and 10-year distant recurrence risk information (14%) as printed on the report (ask her to show it to you). Also ask her to confirm the potential risk reduction benefit of added chemotherapy (7%) to ensure you have correct information as you evaluate potential risk/benefit.
BarredOwl
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Lori, see the thread noted below for a fairly recent conversation among people dealing with chemo brain. Despite patients complaining about chemo brain for decades, little research has been done. One landmark study on it is linked under my post in the thread. As noted in the above comments, many patients get through with few issues. Cognitive issues can also be related to the stress in dealing with the disease, age and other factors--sussing out biologically based chemo brain from other concentration-sucking issues is a challenge. However, chemo brain is a real issue for many and there is a biological basis for it. Also please note: google any drug names as the generic name is not the same as the brand name that threads and docs reference; e.g., paclitaxel = Taxol, doxorubicin = Adriamycin
https://community.breastcancer.org/forum/6/topics/846014?page=1
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It is your decision there is no right or wrong choice. There is no doubt that chemo kills fast growing cells but it can be harmful. Just know the risks and decide what you want to do. I have had many including people on this website say I was reckless for not doing chemo. I almost felt like a coward for not doing it but in my heart and gut said not for me.
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BarredOwl: Thank you for the information. I do plan to leave with a copy of the report.
After staying up last night in the wee hours of the morning doing more research, however, I think I will be opting for the chemo. The reason being my weight. I have a BMI of 39 which puts me in an extremely high category for recurrence. Worse, I've read that even losing weight now can't be considered part of my treatment plan. Apparently, it's like quitting smoking. Your risks for avoiding lung cancer don't go away the minute you smoke your last cigarette. It takes years for your body to repair and return to a state where your chances equal that of a non-smoker. In the case of obesity, it seems that weight loss will only reduce my chances of recurrence after about 6-8 years of maintaining a healthy weight. This is what my oncologist insinuated when we talked on the phone and I'd asked about weight loss as an alternative to chemo. I'm sure this is also what tipped her toward recommending I increase my odds with chemo. After all the literature I read last night, I can't help but agree.
I also read that once you have radiation in one breast, if the cancer comes back there, you can't have radiation there again. So I can't be at all nonchalant about risking a recurrence.
It was disappointing to read, but definitely brings more clarity on my situation. For almost 10 years I have struggled to get this weight off (I was not an overweight person most of my life, gained it after giving up cigarettes in 2007). Hearing my treatment will most likely bring on weight gain is even more daunting. Sheesh, it's as if the mountain I need to climb just gets higher and higher. But armed with this new information, I'm now off to search these forums for topics on weight loss during treatment. I'm really crossing my fingers that people in my situation, who are determined to get their BMI at least below 30 (that's losing 55 lbs for me) is possible if we want it badly enough. Twelve months from now, when I'm down the road to recovery and looking back on this, I really, really, want to be able to treat my supportive husband to the attractive woman he married.
Thank you again, everyone, for taking the time out of your day to offer advice and opinions. You are all extremely kind.
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Just wanted to chime in on the side of : life gets back to normal after chemo. For me anyway during treatment i was a little spacy, but that had more to do with Ativan. I still managed to do my research based job just fine, using more notes and reminders. I lost weight on chemo, too. Around 20 lbs. Now i hike, swim, run, and rock climb regularily. Life is good. 😁
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Littleblueflowers: THANKYOU THANK YOU!!
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Hi Lori-
There's a lot of good feedback already here, but wanted to tell you that I only felt I had any sort of chemo fog after the first round, but that didn't last. Chemo was tough, but I've had more set backs and able to do less before and after my surgery! So everyone is different. I had chemo first, and had a complete response.....so chemo has been good to me lol. Good luck in your decision process...wishing you well.
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Lori, I think you are being smart. When chemo is warranted, then it is on your side, working for you, like the Navy Seals, going out to kill any terrorist cancer cells that may be lingering about (at least that's how I visualized it when I was doing chemo). Another thing that made me 'glad' to do chemo (besides, as you mentioned, radiation being a one time thing) was that I was also ER positive and PR negative, which means anti-hormonals aren't as effective for us as if we had been positive for both, PLUS there are people who have such tough SE that they discontinue anit-hormonals early (I didn't have a problem with Arimidex, but if I had & hadn't done chemo.....that would have been particularly disturbing to me).
If you want some exercise buddies, come over to the Lets Post Our Daily Exercise thread on the Fitness Forum. An encouraging group of ladies at all stages of treatment (including chemo) and beyond and all exercise levels as well. Lots of us have done chemo and have come out on the other side and have gotten back to (or into) walking, running, skiing, dancing, yoga.....doing whatever we want to do at whatever level we want to do it.
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