ANYONE STAGE 1, DECIDING "NOT" TO TAKE TAMOXIFEN?

To elaborate just a bit more - the Onco score is used to decide whether or not chemotherapy is useful, not hormonal therapy, because the trials were run in a patient population that took only hormonal therapy for 5 years on the one hand, and hormonal therapy for 5 years AND chemotherapy on the other hand.  So, that score is that low ONLY IF you take 5 years of hormonal therapy.  If you do not take hormonal therapy, your score and recurrence chance would be higher.

Also, please keep in mind that as this test examines the genes in your actual tumor, it predicts odds of recurrence from rogue cells from that exact tumor, not of a new primary.  While lots of the ladies here identified really, really tiny tumors in their breasts, that's rarely where a recurrence decides to set up housekeeping.  Yes, we're all watching ourselves very, very carefully, and, currently, I confess, I think my breast is sort of bruised where I've been poking around trying to decide whether I feel something there or not. 

I guess what some of us are saying is that yes, lots of ladies skip or delay tamoxofen, and the decision is very personal.  While you may or may not decide to at least give it a try, if your ocotype report is a significant factor in your decision, please do be certain you thoroughly understand all its subtleties.

To put a fine point on it, at an Oncotype of 9 you probably have about a 12% chance of recurrence without hormonal therapy.  Mine was a 12, and they told me my risk was about 16%, with Tamoxifen, 8%, and with chemo, about 4%.  The cumulative benefit with chemo appears to be substantial in recent studies. I was in the tiny minority to get this in the first place. 8% reduction in risk is everything to me.

Tamoxifen is often said to be the most powerful tool in the arsenal. It's not perfect by a long shot, but I can't see why not try it. You can always stop.  I have had virtually no SEs. The early hot flashes were more likely chemopause.

My Story:

1 yr. ago simple cyst was found. 3 months ago localized pain and change to cyst dimension. referral for mamm and untrasound showed shadowing. Biopsy showed cancer. 

I am 47 (body type, personality and health of a 27 year old)
pre-menopausal. One of those 7% of why did this happen maybe its the
7-13% body fat with dense breasts my whole life? Cant be too thin or
overweight need to be just right - LOL

I was dx 7/11/14 with stage 1 infiltrating ductal carcinoma. modified
Nottingham grade 2. 1.5cm r breast tumor. No findings anywhere else.
ER/PR+ Her 2neu negative. Lumpectomy with sentinel node dissection (3
nodes) No findings in the lymph nodes. Braca1/2 reflex bart test clear.
Oncotype score 26(intermediate with 40% chance of inaccuracy).
Waiting on mamma print. Just started localized direct target radiation
to R breast and .07cm margin near chest wall. It has been suggested i
do chemo then tamoxifen.

ThumbsUpThumbsDownMY Questions are around quality of life:

What would you do if you were me:

I have a 95% survivorship with R breast after lump and rad and 60%
survivorship for rest of body. If I add chemo it goes up 3-6% and if I
add tamoxifen it goes up 17-20%. Putting me in the 86-89% range. BUT
what about "QOL" Quality Of Life issues???

With chemo and tam the SE's as you know and have read here are
horrendous. I have never been able to tolerate hormonal deviations. At
17 when my menstruation began they put me on ortho pills to regulate
menses they made me worse overall but periods were more regular. Weight
gain, headaches, nauseous, very depressed and angry.

I take nutritional supplements now and they regulate my periods well
but they are not helpful/contraindicated or recommended for chemo or
tam. I now have osteoarthritis and I have not started any hormones or
chemo yet.

My neurophysiological system is very sensitive.

My 17 year old daughter says don't do it. My sister and brother in
law don't do it think of quality of life. My husband says lets wait for
mamma print get a second opinion AND lets see what other women like
yourself have to say about their quality of life. My friends say do it.
My family all physicians and in the cancer field say look at the
numbers. I am not a number though. I am an individual who
philosophically is against toxins in the bodymind.

Many thanks, warm regards,

Jyoti

Thoughts, Questions, Comments, Feelings

Thought I would add my thoughts to this topic and what I have come up with. I opted out of taking Tamoxifen or other hormone therapy.  I am a Stage 1b, had lumpectomy and external radiation (30 treatments) and had a hard time with radiation. Node negative except for isolated cancer cells in one sentinel.  I researched the benefits and side effects of Tamoxifen and was especially concerned with the possibility of eye damage such as cataracts.  I am very near-sighted and did not want to take a chance with my eyes.  When I had my routine eye exam back in March I was diagnosed with mild cataracts and chronic dry eye, having never had this before.  I can only assume it was from the radiation and my ophthalmologist said it certainly could be a possibility but usually takes longer than that to acquire after radiation treatments.  I had a score of 21 on the Onco Dx test which gave me a 13% chance of recurrence with Tamoxifen taken for five years.  Another computer study on my diagnosis gave me approximately a 78% chance of cancer not recurring by not taking hormone therapy.  I am going ahead with my life on the chances I will not be in the 22% of recurrence.  Tamoxifen or other hormone therapy decreased the chance of recurrence by about 7%. I think about my decision almost daily but I feel good about it. Quality of life means a lot to me.  Yes, it's been an emotional year. I am coming up on my one year cancer diagnosis anniversary in about a week. 

Meow13,  With my score of 21 my oncologist did not recommend chemo for me; she said anything over the score of 31 she would have.  I wish you well. We have similar diagnosis, however, your tumor was grade 2 and mine was 1.  I scored 4/9 on the Nottingham. I had the option of a mastectomy or lumpectomy, however, my surgeon recommended only the lumpectomy which I was fine with.

sparkle - I believe the 9 and the 7% are the same thing 9 is the score and 7% is the predicted recurrence rate at that score. It does assume tamoxifen use for five years. The ER PR is their test of those receptors and you could compare those results from the one you got from the local path report.

I have asked that too in the past, and while no one would commit 100% to the formula, that is approximately the number. If you take 14 and reduce it by 50% you'd get 7. That is how I calculated my benefit from T. 

I'm terrified and can't decide if I am I being irresponsible or doing what is best for me?

I'm healthy hated all the SE's from lumpectomy and radiation and made it through and all is finally on the mend but now I have to decide next course of treatment?

What about integrative medicine of diet, exercise, listening to my body and not following the standard method of treatment?

My Oncotype score was intermediate range of 26 Mamma print 29% high recurrence. 

1.4cm tumor removed nodes clear

Nottingham grade 2

What would you do?

Quality of Life?

Just do it?

I agree with Selena - it can't hurt to try it. Also you could consider a second opinion on the pathology too to see if another lab gets the same results (particularly in respect to grade). I've been taking it for almost eighteen months, and while I don't enjoy taking it, it is not as bad as one might think. You can take Effexor to help with moods and hot flashes.

hey sweetie, it is your choice,  i was stage2, idc, and l mast, chemo and rads and 5 yrs on tamoxifen, and Praise GOD I am now a 20 yr SURVIVOR, good luck. msphil