I want my BRAIN back!!

raro · October 2007

Hi all,

I haven't posted here in a long while. I posted this in a different area, but I think it was the wrong place...typical of me at this time in my life. I am really having a hard time and hope you wonderful people can help me out with this...

I was dx'd 2 years ago with stage 3, 8 nodes positive, ER+. Did TAC chemo, rads, mastectomy. I've been on tamoxifen about 1.5 years now.

I can handle the fact that I have no sex drive, have vaginal dryness, etc., as I've been a widow for several years and have no desire for a relationship. Hot flashes are pesky, but manageable...BUT I am 41 years old and have the brain of a 70-year-old!!!

I thought it was just the "chemobrain," but from what I've read, it sounds like it's due to low estrogen. So am I going to have mini-Alzheimer's for the rest of my life?! Is it the tamoxifen that is doing this?! My thoughts are slower, it takes me forever to get things done, I'm a bit depressed (mostly due to my situation), I'm always tired even though I eat right and exercise, and my brain is always foggy. Everyone just laughs and says they guess it's part of life, oh, well. But they don't have to live with it. This is what the rest of my life is going to be like?

On a side note, does anyone know if there a connection between tamoxifen and ovarian cysts? Could this whole mental state be related to whatever is causing the cysts to grow?! Last year I had an 8-cm cyst removed from my ovary. Less than a year later, I grew back 3 more (that size, too!) and one small one on my right. The doctor removed the cysts plus 3/4 of my left ovary, since it was enlarged (How do you remove 3/4 of an ovary?! He said the rest was adhesed and started bleeding, so he just left it). I still have my right. I just can't imagine having abdominal surgery every year until the tamoxifen is finished. My doctor told me he guesses my body just wants to make a bunch of bubbles. But after spending the last week recovering and feeling crappy, I am not amused. Help!!!

iodine · October 2007

Hi, bless your heart! This is way too young to be going thru all this and feeling this way, too. And 41 is a baby to feel like giving up on all the wonders of love and sex and looking forward to a life with someone you care about!!

First, I cannot imagine why this doc would not completely remove both of your ovaries! This just amazes me! Tamox is for keeping estrogen away from you in the first place, dang it. Why put you thru all this surgical crap and not get to the bottom of it all and be done with it!

May I suggest: schedule an appt with an onc/gyn! Get an opinion from a spec. who treats cancer and gyn, not just gyn. And if necessary, get TWO. You need to be evaluated by someone who will discuss this with you at greater length and truly ans. your excellent questions to your satisfaction and set you on a path to comfort about your gyn stuff.

Now, about the brain drain: It may well be due to low estrogen. We also make it in our brain - pituitary gland and in our body fat as well as in our ovaries. BUT, there are things we can do to sharpen this up an keep up: make notes, I think the post-it company was invented for us (LOL) and then the different games, crossword puzzles and that new one(of course, can't remember the name of it) that has numbers going up and down, whatever. These are used to keep the old brain cells working well.

This sort of thing can be discussed with a good doc. or a counselor.

But first get this gyn stuff worked out to your satisfaction. You are very correct to questions this treatment, in my opinion. I know I would.

Anonymous · October 2007

I also developed an 8 cm ovarian cyst while on tamoxifen--my gyn said tamox didn't cause it, but I have my doubts. I ended up with a total abdominal hysterectomy (they were concerned about ovarian cancer and it was too large to remove laproscopically) about 2.5 years ago, fortunately everything was benign. I still take tamox and will for another year. I have noticed some "fogginess" at times, but nothing dramatic--I think it's from the combination of the tamox and the loss of estrogen.

raro · October 2007

Well, I thought, if they remove the ovaries, then I will really be in menopause, since I couldn't take any hormone replacement. And I thought if I feel this badly now, with much of the estrogen production blocked, how much worse would I feel if I wasn't producing any estrogen at all?! I am so confused about all this, and I think my gyn was just going with what he thought was best, gyn-wise, not cancer-wise.

ADK · October 2007

Hi Raro,

I am 50. I had problems with cysts and endometriosis since I was in my 30s. I had abdominal surgery for Crohn's disease in 1992 and at the same time, they removed 95% of my right ovary along with a grapefruit sized endometrioma. They found it when they did the pre-surgical tests the day before my surgery. At that time, I had to sign off on a hysterectomy if they found that it was cancer. It wasn't. I had a total abdominal hysterectomy last November. I had been fighting it for about four years -it was recommended to me before I was dxed with breast cancer. My uterus was very tipped, to the point where no tests for emdometriomal cancer could be done. Having had a cancer dx, I decided it wasn't worth fighting it anymore. I am not taking tamoxifen. Having said that, I am going through something like you are - I am not a sharp as I used to be and I forget words. I agree with you that it is probably due to lack of estrogen. I guess what I am trying to tell you is that I don't think you will feel that much worse than you are feeling now. With the tamoxifen, you probably are not producing much estrogen now, anyway. I don't think taking out your ovaries will worsen the situation. Of course, you should talk to your gyn about this.

I agree with Dotti about the puzzles - I usually do three crosswords a day and a couple of Sudokos (that's the other puzzle she was talking about with the numbers).

Good luck with your decision.

I want my BRAIN back!!

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