What about not taking Tamoxifen?

[LindaMHR]

I have quit my Tamoxifen after two months due to my terrible sleeping (hot flashes) or not sleeping would be the term. I went off HRT when diagnosed last spring -- stage 1, a 1.1 cm tumor with a .25 tumor off the side of that. My nodes were clear. I had resumed hot flashes after quitting HRT but they were much worse at night with the Tamoxifen. From my reading I understand it is much more controversial than presented by my oncologists. My lifestyle is greatly improved -- I have retired from a job that was most often ten to 12 hour days; eating was often interrupted in this job as well. (I eat very well fruits and veg wise.) I feel it is wrong (unhealthy and depressing) to go around being exhausted due to the sleep issues. I feel because my lifestyle is so different, and because I am attempting to exercise etc., that my decision to stop Tamoxifen is reasonable. I know that many women quit taking Tamoxifen -- but it is hard to find research on that topic! Thanks, LMHR.

[Cleveland Clinic]

Dear LMHR:  There is very good evidence that taking tamoxifen (or an aromatase inhibitor in post menopausal women) significantly reduces recurrence and new cancer in women who have had estrogen receptor positive breast cancer.  Lifestyle certainly will help your well being – and health in general - but scientists have shown that it may have limited impact on prevention of breast cancer or reduction in recurrence.  Any treatment should be weighed in terms of risk versus benefit and this may be a personal decision.  Our recommendation would be to discuss this with your oncologist as sometimes side effects can be managed or drugs could be changed so that there may be other options than quitting the tamoxifen.

[Babs39]

I am 2 years post surgery and radiation therapy. I still have trouble sleeping through the night and have other effects of the radiation therapy.  I refused Tamoxifen and I keep refusing it.  I can only speak from my experience but I think the most important thing for the patient is to trust her instinct and make each decision for herself.  
I am 68 years old and my cancer was small too and  it was estrogen receptor positive and the nodes were clear.  
When I saw the oncologist last, he again recommended Tamoxifen.  I asked him why in MY case.  All he could come up with was that HE believed in it.  I asked my personal physician his opinion as to why the oncologists seem to recommend Tamoxifen across the board to all patients.  His reply was they are playing the odds.  They know by the numbers that women who take it have less chance of the cancer coming back than those who don't take it.  But we are individuals and we have individual circumstances.  
My surgeon is also recommending it.  He says my breast that was radiated has a better chance of being cancer-free than the other breast.  So Tamoxifen will protect that one too.  But the doctors do not have to live with the side effects of the medication, the patient does.  
In my earlier years I had to refuse HRT, year after year.  And I am sure glad I did now!  
The doctors spend most of the time taking about the advantages and quickly pass over the part about side effects both short term and long term.  
So my opinion is to make the decision for yourself.  Look at John Edwards wife....she did everything the doctors told her to do and her cancer has returned anyway.  
Babs39

[Babs39]

P.S.
My suggestion for your sleeplessness is to make good use of the time you are awake during the night.  I get up and do something quietly in another part of the house so I do not disturb anyone else.  I read or balance the check book, or put in a load of clothes in the washer.  Or go online and e-mail my friends and relatives.  I have the freedom of going back to bed later when I am able to fall asleep.  My life has changed and will not be as it was before.  I can't have that life back.  So I try to adapt and accept the circumstances of this one.

[carme]

It's cancer.  Fight it with everything available...that's all we really have at this time.  In the meantime, get out there and help push for a cure!
If they can treat ED, they can treat Breast Cancer. We just need to push the issue.
Linda MHR, you already have all the info. You can be retrained to sleep. It may take awhile, but I learned to.  And not with with "diet and vitamins etc". I have to say it has taken me 3 good years, but I'm there.
Read other posts about Tamoxifen.
Sit back and see how many attack this thread.

[Babs39]

Will you please share how you retrained yourself to sleep?  Maybe if I could achive sleeping all night I would not be so fatigued during the day.  

[carme]

What you posted about making good use of your waking hours is a great start. I did exactly that and what you posted. I also exercise 5 days a week at 5 AM. It actually jumpstarts my day and I really am tired by bedtime.
While I was on Tamoxifen I had night sweats, but still got about 6-7 hours of sleep.
My sleeplessness became worse after my parents and my father- in- law died in the same year. I was totaling about 4 1/2 hrs. a night.  A combination of prayer, therapy, Sonata (and the fear of becoming hooked on sleeping aids) and exercise helped me.
The therapy taught me to leave my issues on that tree outside the door each night when I came home. She also taught me some great relaxation tecniques.
The Sonata is good for when you wake up and find you still have 4 or more hours before you need to be out of bed. (I've never had a problem "falling asleep", Just staying asleep.). My RX of 30 pills for Sonata lasts me about 4 months.
After my hysterectomy in 2004, I started sleeping less again...KILLER hot flashes and night sweats...the Tamoxifen was nothing compared to this.
I've found out that MANY women suffer from sleeplessness after menopause...no one talks about it tho.
Start paying attention to insomnia, you will be amazed at how many people it affects, not just women.
Do not look at the clock when you wake up.
When I wake up, I start praying The Lord's Prayer over and over...it usually works along with the relaxation stuff.
There were many, many nights I got up and read or emailed or watched TV on the couch. Sleep is better now even tho I've got our business on my mind (but I left it on that tree outside the back door) and I worry about my girls gone away to college and I worry about our world.
God Bless you, and good luck on getting your sleep back.

[Babs39]

I am off the subject here on this forum, but I want to thank you for the information about what has worked for you to help you sleep.  I hope you can post it on the sleep problems forum.  That is where many could be helped too.  I tried several different things when I went to bed last night....I turned out all lights including the patio one that lights up the yard but also one of the windows.  I turned the clock to the wall.  I used ear plugs to shut out most sounds.  It is winter and there is snow on the ground but I was comfortably warm.  I have no trouble falling asleep so I was out in no time.  I woke 2 hours later  to almost pitch darkness and no clock!   At first I didn't know if I could go back to sleep but I tried my favorite of your suggestions...I started saying the Lord's Prayer over and over.  And soon I drifted off to sleep.  I woke up 2 hours later with a grin on my face realizing I had slept for 4 hours total.  The night before had been only 2 hours.  So I am going to use the same circumstances again tonight.
Thank you Carme...

[pickle600]

A related discussion, I want to stop my tamoxefen was started.