Considering refusing chemo because I fear "chemo brain"

(Of course, not all) but a lot of what is called chemo brain is from stress, lack of sleep, after effects of surgery & anesthesia; you are on overload both physically & mentally. I've always had to write everything down (I am the Queen of Sticky Notes!) so I was okay there, but the thing that saved me was asking for a good prescription sleeping pill. Being able to be unconscious at night for a good chunk of time really helped me cope with the rest of it.

Hi LoriBee--I've read through all the posts and wanted to put my 2 cents worth in since I'm 9 weeks PFC with TC. I had IDC Stage 1A, grade 3, no node involvement. My Ki67 was high which prompted my MO to offer me the Oncotype test. I had an oncotype score of 28. My report said an 18% of recurrence, which I could bring down to 12% with chemo. A 30% drop in my chances. I'm in my mid 40's w/ 3 kids at home so I chose chemo. I also cold capped which I'm blessed to have been able to do. I did not experience chemo brain. I had the common side effects of fatigue, taste changes (I still don't have all my taste back but getting better every week), lymphedema (I'm going to a physical therapist who specializes in this for massages 2x/week and it's improving), mild neupopathy one round, hair loss...but you take it 1 day at a time, one side effect at a time. Most of those side effects last 7-10 days and you feel OK the other 2 weeks, at least for the first couple infusions and then you are already half way through. I actually lost weight the first couple rounds and now I'm back to where I was when I started. I did stay active most days, even if it was only walking for 30 minutes. With my regimen, my MO didn't think the side effects of steroids were worth only 4 rounds so I only got them in my IV drip where many others are on steroids at home which increases their appetites and helps retain fluid. My point is, it's not guaranteed that you'll gain weight on chemo if that is one of your worries. Your weight has been there for 10 years, it'll be there to deal with in 4 months. Instead of focusing on loss, just focus on maintenance and you are no worse off. Concentrate on making a decision that you'll never regret. It's different for everyone but I can say I did everything I could to fight this. Your struggle with this decision is real, I just wanted to give you another view.

I'm no scientist but a 2 x (breast cancer 1st time and recurrence) survivor of chemo both times - I don't regret. Am I mentally as sharp as I was in my 30s before BC? Probably not quite.... There is chemo brain, and then there is the brain that has been exposed to some pretty traumatic shit. My father died of a heart attack 10 days after my first surgery. I got laid off, my dog died. Hard to tell what is what. What I may or may not lack in mental sharpness, I have gained 10 fold in ability to handle the little day to day "distractions" - too many red lights, argumentative coworkers, bitchy whiney friends. The way I looked at it was this...if you can reduce your chance by (6,7, 8%) of getting seriously hurt in a car accident every day by putting your seat belt on even if it wasn't the law, would you do it? Ok - maybe a bad analogy as there aren't many side effects from wearing a seat belt, but considering it's life on the line, I'd do it. Exercise, meditate or have a relaxation therapy plan in place whatever you decide. Sleep aids aren't the worst thing to happen to me, cancer and dying before my son is out of high school would be. Sorry if it sounds harsh, but that's the reality for many of us. For Taxotere though I'd definitely cold cap. I did elastagel for around $400 total including dry ice, borrowed mitts and booties and have no neuropathy other than a little tingling when I first get up in the morning on my feet only. Lost 70-80% of hair but got it all back.

LoriBee, so how are things going now for you? I was going through the same concerns as you. But in my situation, I had a 1mm micrometastases in one of the sentinel nodes. But nothing was found in the axillary lymph nodes. My oncologist was confident that the cancer was gone. I was ecstatic, but then he still recommended I go through TC chemo + tamoxifen afterwards. I didn't go through an oncotype test because he said he would still recommend chemo no matter the outcome. And he showed me a model that showed the 10 year survival rate was 91% without adjuvant treatment and 95% with it. So I was very reluctant to go through with the additional treatment and risk the side effects for just 4%.

My path was shared with other oncologists who looked at my numbers and said that everything looks great and I don't need chemo. I have a friend that works for a pharma company that is currently doing trials for HER2+ drugs and these are Stanford oncologists she works with.

I wanted to seek a 2nd opinion at Stanford and while I was waiting to get insurance to approve all this I kept researching. I also listened to the Cancer Care podcasts that had several updates on early-stage breast cancer. What I learned was that the standard of care was still TC chemo for lymph node involvement. And this was from doctors that are either in research or heads of major breast cancer centers. I came to realize that the Stanford oncologists didn't have the entire picture. They just knew the numbers from my path (ER/PR+, HER2-, Ki-67 low). They didn't know about the 1mm micrometastases in the tissue beyond the lymph node.

After about a week, my clinic finally notified me and said they couldn't authorize the referral and I would have to go directly to Blue Shield which would probably take another week. But by this time, I already made the decision to go through the treatment. A 2nd opinion would probably make me more stressed out, and I didn't want to live with the "what if's" if I had a recurrence down the road. At least I'll be able to say that I did everything I can now to beat this.

My BMI is also similar to yours, but I did not even consider the additional risk factors associated with obesity. I, too, thought that a 180° lifestyle change would be an alternate to treatment, but I had to be realistic. Even a tiny lifestyle change like eating less carbs and more veggies can be a struggle. Haha

LoriBee, when you wrote "these might be the last four weeks that I ever feel good again" it really struck a chord with me because that's exactly how I felt after my diagnosis. I knew I wasn't going to die any time soon, but I wasn't sure how I'd look and feel post treatment. I spent hours looking a mastectomy photos. Now that I am on the other side I can say that in some ways I feel better than before, and that outweighs the ways in which I don't.

I am also a software engineer and I feared that chemo brain would steal my livelihood, I'm happy to say that it did not. I am having no trouble at all understanding complex topics. My MO was conservative with chemo, so no neuropathy, and my brain seems to be the same as before. I had no SEs from Tamoxifen aside from hot flashes. I am currently on Arimidex and experiencing joint pain, but it's mostly just annoying and not stopping me from doing anything. My radiation treated breast is pretty much back to normal, two years out. Post treatment, I began practicing yoga which has made a big difference in how I feel. I am much more flexible, and much less muscle stiffness than before. I also joined a rowing group for BC survivors and I'm having a wonderful time learning a new skill and meeting new people.

So, it's not all doom and gloom with chemo. I worked through it, only 7 sick days taken during treatment. Good luck, and I hope your treatment goes smoothly

LoriBee, I am so glad to see this mostly positive update from you...I was about to post that exercise through and after chemo will help (in fact I think there is a recent study that found that it may reduce 'chemo brain' which, as has been pointed our here, may be more 'stress brain' than just the chemo in many cases (IIRC my sister had it worse than me, and she never had chemo....)

so, wanted to give you encouragement and a bit of caution on the rads: I also am large chested and I had serious peeling, redness and irritation from rads. It The good news is: once i finished, it healed REALLY quickly!!! Much quicker than I would have imagined: within two weeks my skin looked pretty much normal. The healing was much faster than I have had with bad sunburns.

The word of caution; it isn't clear to me if you are currently swimming, but my RO ordered me to stay out of the pool for six weeks or so post rads, because of the danger of infection. Of course, I had (lots of) broken skin, but still, I'd talk with your doc about it to be on the safe side. I had a relatively easy time during chemo (continued to work, only missed a few days of work, no horrible side effects other than hair loss though my sense of taste went south)... honestly, the worst parts of the entire ordeal for me were losing my hair and having to stay out of the water during both chemo (same reason, infection concerns) and rads. I did 'cheat' and went in the ocean in between chemo and rads. It was very life affirming, since (as my avatar and name imply, oceans are my thing. That said, I wore a dry suit, so my actual contact with the water was minimal....

Good luck for the rest of rads and beyond!

Octogirl

Chemo brain is real, but I think you can do a lot to minimize the effects of it and recover. Staying mentally active is important. Exercise helps too. Also, and this is a general thing when you are dealing with bleepin' cancer, start looking out for #1. If you need to walk for half an hour in the evening to keep your head straight, do it! The rest of the family will have to pick up the slack. If you don't feel like going to a boring dinner party, don't go. I hit a rough spot towards the end of chemo and it lasted a few months. I couldn't even read a book. But I played games like sudoku and candy crush and I kept walking, looked at art, played with my dog. Anything I could think of and that I could manage to counteract the mushy brains. It seems to have worked.