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can you get chemobrain without chemo?

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

It has been a long haul, over a year and a half, with 7 surgeries.  Ever since my diagnosis, this cloud has come over my mind.  It has been with me, but is getting better.  Memory, decisions, just the most basic things have become difficult.  I figure it is because the mental burden of bc, all the drugs, tons of anesthesia.  But I have not had any chemo, no radiation, no hormone treatment.  I am definitely anemic, but my basic question is:

Can you get chemobrain without chemo?

Does it last forever?

I am not complaining, but just curious so I can get along with my recovery in the best way possible.

Thank you all!!

cinnamonsmile
Posts: 1042
Joined: Dec 2010

There can be many reasons for chemo brain without the chemo. I am a classic case of it. I started to chemo brain without the chemo many years prior to my cancer diagnoses(I didn't need chemo or rads for my breast cancer, just surgery). From what I learned about myself, some mental illnesses can cause it (bipolar,depression, anxiety problems), stress, medications, benign brain lesions (I have leukoairoses that contributes to mine as well), dementias, and aging for some examples. Who knows how many reasons there can be.

I would talk to you primary doctor about this to rule out any conditions that may be lurking. You may find out it is just something that will get better with time, but at least you will have peace of mind or  know that pieces of your mind are coming back!

I don't think anyone knows how much will come back...hard thing to predict.

I got lots of tips on how to deal with my mental confusion from a courageous lady I met on CSN whose husband had brain cancer....she started me on post-it notes, writing everything down. I got a whiteboard for my dog needs medications that are sometimes spread from everyday to every three days,so I write on there for the month what day she gets them, I also write on there what days I wash sheets and towels cuz otherwise I can go too long without washing them, I write down on the white board to check the bird food and water, etc.

I have notebooks that I keep for conversations and dates I had wtih ins people, dell tech support for the lemon of a laptop I bought from them,etc.

I have pads of paper (luckily my partner brian works at a paper mill) that I write down phone calls I need to make during the week. Sometimes I just use the notebook cuz pieces of paper can get lost easy.

I used to keep all medical papers in folders, but some are too darn big so I went to three ring binders.

Mediciaid keeps screwing up on my case so I keep a Medicaid screw up file.

I keep a small tablet in my purse for grocery lists, directions, notes from the dr on meds, etc (if I don't have them write it down for me).

It takes a lot of work to make a system but is well worth it in the long run.

From another I have chemo brain without the chemo....You are not alone.

 

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

Great tips cinnamonsmile!

TraciInLA's picture
TraciInLA
Posts: 1829
Joined: Jul 2009

I think we all sometimes underestimate what the plain, simple stress of having cancer can do to us.  The effects of stress (any kind of stress) on memory is well documented -- and, if hearing the words "You have cancer" isn't stressful, I don't know what is!  Plus putting your poor body and spirit through 7 surgeries in a year and half?

I'm as guilty as anyone of wanting to blame chemo, radiation, Tamoxifen, anesthesia, etc. for everything -- and they sure deserve a lot of the blame!  But we have to try to be just as kind to our spirits as to our bodies for getting us through all of this.  

As long as your doctor has ruled out any other medical problems, I would try to focus as much as possible on managing stress -- simple meditation/breathing exercises, relaxation techniques, yoga, etc.  There's also research that spending time outdoors, gardening, playing with your pet, all help reduce stress.  I think it's worth finding what works best for you.

Don't know if that helps at all?

Traci

Christmas Girl's picture
Christmas Girl
Posts: 3629
Joined: Apr 2009

... and cinnamonsmile provides awesome tips & tricks. And I hope, with time, the mental fog will lift.

Kind regards, Susan

 

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

I just plain call it cancerbrain, not necessarily chemo brain.  I didn't have chemo, but, since being diagnosed and having the surgery and rads, I have noticed my mind doesn't seem to be as "crisp" as it was before my diagnosis.  Considering all that our poor bodies and minds have to endure thru bc, I think it would be considered normal, don't you?

 

Big hugs to you,

 

Kylez

TraciInLA's picture
TraciInLA
Posts: 1829
Joined: Jul 2009

Right on, Kylez -- I think "cancerbrain" is the perfect term!

Traci

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

Totally agree with you Kylez!  As Traci says, RIGHT ON!

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

I think stress has a lot to do with it!  I now use a "Remind Me" app on my smart phone for all of my appointments or anything important that I need to remember.  There are many of these apps and they alarm and shoot you a text to remind you.  Hope this helps!

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Unfortunately, stress goes hand in hand with a bc diagnosis.  I don't know of anyway to avoid it.  Just be easy on yourself and know that it might take some time.  You've been thru so much.

 

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

Thank you ladies for the words of encouragement.  It helps to know you understand, and I appreciate your suggestions.  It seems that now I am finished with the reconstruction, I have to still be patient and realize everything is still healing.  I see progress, it is slow.  Now, when my people ask, "how are you.....?", I am not sure what to say.  I keep it simple and just say, "good', compared to a year ago, have had big progress.  Compared to where I want to be, I still have a ways to go.  I know they care, but it is hard to explain.

I'm so glad I have you to confirm that this is part of the big picture, it makes things much easier.  It seems this cancerbrain started when I got my diagnosis, even before any surgery.  All of the sudden, it is so hard to concentrate, or recall details.  I am starting to read more and use my mind which is helping me focus.  Mediation is also doing me good. 

Thanks again.

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

We all do understand and we all do get it!  I know that reading might help and doing puzzles.  Meditation sounds great too.  Just know that we're always here for you.

Hugs, Diane

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

I like the term cancerbrain Kylez and I think that describes it exactly.  I just wish that none of us had it. 

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Now I have something to blame it on!  Not making light of this subject, but, when I tell people that I've noticed such a change in the way I think anymore and it only happened after having bc, I don't know if they believe me. 

Thanks for bringing this subject up.

 

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

Hi Alexis,

I don't know how old you are and when you had your last physical?  Have you spoken to your doctor about the mental changes?  That might be a starting point.  Cancer brain is not a diagnose but chemo brain is.  If you had chemotherapy, you might want to look here on the Mayo Clinic web page that gives a good explanation on "chemo brain".

http://www.mayoclinic.com/health/chemo-brain/DS01109/METHOD=print&DSECTION=all

I have had chemo, radiation, 20 surgeries and, 18 years of using hormonal drug therapies.  I have 25 doctor prescriptions for my many medical conditions other than stage IV cancer.  I have used methotrexate (a cancer drug) for 5 1/2 years for uveitis.  I will be starting my first chemotherapy next week after finishing my first one back in March 1995.

I don't have chemo brain in any form.  One can be stressed as I am at the moment.   I am certain once I have a good idea how to deal with the Taxol and then if I am going to retire or not, it will vanish.  I don't believe in miring one self down with something that happen years prior too.  However, searching for lost keys, forgotten about an appointment, loosing your glasses are not reason to think dementia or alzheimer's.  I hope your change in thinking has a simple explanation.  Keep us updated.

Wishing you the best,

Doris

 

 

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I'm going to use cancer brain as my excuse too!  And about what do you tell people when they ask how you are, it always depends on who asks me.  Some people don't really want to know or hear the truth, and others, I know, really do want to know if I am doing well or if I am having problems. 

Have I said how much I hate cancer!!!! 

I am really just thankful to have survived bc and for that, I will take cancer brain.

 

Big hugs, Megan

 

Pink Rose
Posts: 495
Joined: Nov 2012

Cancer brain are the perfect words to use!  I know I will be using it!  Thanks to you Kylez also for giving us that term!

 

 

gagee
Posts: 318
Joined: Sep 2010

Don't know why you are so hard on Hopeforthebest. I had way to many rads and got so many side effects even the docs were surprised.  Some times we come on here to just vent and have some one listen. Not to be preached to about correct terms and usuage of words or terms.  My memory has gotten so bad and I try to deal with it in as many ways as I can. I had no chemo but rads like I said. I appreciate any suggestions from one and all. So please don't be so harsh as we all have a plate full. 

Diana

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

I agree with you Diana!  Some people are so mean.  Just ignore them.

I've used the term cancer brain for a long time and whether it is a "real" term or not, it is real on this site and many of us feel that way as seen by the many posts agreeing with Hopeforthebest.  

If it helps for us to explain certain ways we feel, then use it. No one has the right to criticize or judge any of us for terms we may use to help describe something we're feeling...no one!

I just wish there was a cure and cancer was abolished so we had no need for any term, any site.

 

 

Pink Rose
Posts: 495
Joined: Nov 2012

I will use the word cancer brain!

Lynn Smith
Posts: 1265
Joined: Mar 2011

This sounds just like me.IN fact my husband wonders what's happened.I didn't need chemo or radiation.Just surgeries(2).I feel like i'm going in so many different directions.I'm low on B12, folic acid and Vit D but this happened after a bad bout with bronchitis.It just so many things wrapped in one.Just wish I could pin point it.

Are you losing weight too.I am and very depressed about it.This is sending me over the edge. Stress is my conclusion.I forget things more now than ever.

I am taking tamoxfin.Think I will look over again what those side effects are.I gotta know before I get more out of sorts.

Lynn Smith

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

I noticed that you said you are loosing weight; me too!  I am on these antidepressants and they decrease my appetite.  After seeing the pounds drop, and not wanting them to go, I realize I MUST TAKE CHARGE!  Eating 3 square meals a day, and getting regular rest have improved my symptoms.  I think there are the physical demands of recovery along with the psychological stress of dealing with it- the combination creates this mental burden connected with our cancer diagnosis. 

Unfortunately, I had to leave my job working evenings but that improved my balance for sleeping. I recommend to cut anything that you can to get more time to take care of you.

Good Luck,

Annie

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

Hi Lynn,

Do you live in the north?  My primary care told me that everyone in the north has a VitD deficiency due to lack of sun.  I don't know how true it is but I know that I have to take Vit D and have now for more years than I can count.  I also take B12 and my folic acid is due to methotrexate which is a chemo drug but used by me for my uveitis.  It replaces something that Methotrexate removes.  

I am sorry that you are stressing.  Are you able to go for walks?  It use to help me a lot to go for a walk.  I use to walk 2-3 miles every day, even in winter.  My foot brace now prevents me from doing it and I do miss it.

Best,

Doris

 

 

 

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I'm sorry you had to leave your job, but, it sounds like you have really taken charge of your health and that is so great!  Keep eating and getting lots of rest.

I've always believed also that many with bc suffer with PTSD.  I really think that is true. 

And, I use cancer brain as my excuse for my forgetfullness also. 

 

Good luck and wishing you good health,

 

Diane

gagee
Posts: 318
Joined: Sep 2010

Some people on here seem to forget that we all are in the same boat from time to time.  Take the good suggestions and leave the bad ones.  Sorry some here have to be so perfect and specific when all we need is a little support and understanding. My memory is terrible and it got worse after having rads.  Doctor even mentioned that (looking back) I probably didn't need so many rads.  That is here nor there and I can't go back.  So I try to deal with everything as best I can.  By coming on here and venting, listening and listening and listening I feel better. 

Wishing you the best and hope some of the helpful hints will get you through this.  

Diana

tufi000's picture
tufi000
Posts: 436
Joined: Jun 2005

In addition to the many comments here, my primary care doc found I had low potassium and magnesium in blood tests mostly due to the leaching from the meds.  But low paotassium can have symtoms similar to alzheimers!!!  I cannot believe what a difference treating this simple imbalance has had for me.

Lynn Smith
Posts: 1265
Joined: Mar 2011

I live in Ohio. Seems we do have alot of the same vitamen deficiancies(sp).I didnt need chemo or radiation.Just all those problems with fighting bronchitis and no appetite with that crud. I am on the go alot.Never stop but I do want to start walking.My husband works 7 days a week.BUT says he's retiring in a couple months.Maybe we both can walk.There's alot of places around us we can walk. The closest is our cemetery.Husband used to walk there a few years ago but was getting ready to leave about dusk one night.He just happened to look around and saw a young girl dressed in a old fashion dress.Then suddenly she disappeared.He walked at the cemetery awhile after but not till dusk!!!!! He said she looked so sad.  

I'm working on my weight problem.See we have some who want to loose and some want to gain.And we both feel the same about ourselves.I know I don't feel good being as skinny as I am. I want some weight.IMO I think it's my metabolism.

My weight loss has put me to being a little more high strung which doesn't help to gain weight.I eat less in my case but others might eat more and gain.

Lynn Smith 

Lynn Smith
Posts: 1265
Joined: Mar 2011

OMG you said since taking antidepressants you are loosing.I thought about going on them to calm down and maybe gain a little but looks like they are not want I'm looking for.I thought I might settle down and not be so active but maybe I would be more active. Like I said I think its a metabolism problem. Doctor doesn't seem worried but she knows I'm losing and can't lose much more. 

Lynn Smith

 

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