surgery over..now the wait

pattimay

I had my surgery yesterday.  Just one needle localizaton.  I see the surgeon for results of biopsy next Wednesday.  As always the waiting is the worst.  But I'm really more afraid of going on the Tamoxifen.  I have the bottle sitting here for 6 months. I thought this last mri would be okay since my surgery last year for the ADH.  My surgeon is very upset that I have not started taking it yet. I'm worried about blood clots, other types of cancer, the hot flashes, weight gain.  Also, since my dad has heart disease I was told by heart doctor to take a baby aspirin each day.  NOw I read that this may cause strokes.  So wouldn't my risk be higher for strokes with taking the aspirin and the tamoxifen?  I also smoke.  I know, I know I have to stop.  I don't smoke in the house, in the car or even smoke when I go out.  It's just maybe 4 a day outside.  So this raises my risk also for blood clots.  Anyone else afraid to go on this med and also afraid not to???

mawhinney

All meds have side effects but not everyone experiences the side effects.  Many take Tamoxifen without any problems.  In my opinion you are putting yourself in far more danger by smoking than by the possibilty that you may suffer a side effect from Tamoxifen!  Have you asked yourself why you are so stressed out over a possible side effect when you are deliverately putting yourself in danger by smoking? 

jan508

pattimay:

I quit smoking at my surgery in Sept. (find the forum Stop Smoking thread) Great help there.

I started Tamoxifen in October and have had no side effects (maybe a hot flash now and then). Everyone is different but I heard also that some se's from Tamox come and go.

Good luck and I think the meds might be carry a bigger benefit than risk but talk to doc.

Jan

phew

pattimay---i agree with what the others wrote.   I have found that most se warnings a cya !  They gotta tell you all the worst case scenarios!  I grant that i have only been taking Tamox for only a month, but i'm thinking, wharver will keep standing the longest wins.   Perhaps i am more cavelier than others, but i have been thru 2 surgeries for cancer in my brain and another for endometrial (both several yrs ago).  Maybe that gives me a different take----keep walking talking standing and thinking in the now, or not to do what i can conrol today, in case it might damage me.   Anyway thats my view   Fatalistic?  Probably.  Denial? More than likely.  But i always land on, yeah but who knows when the tomorrows will end.  Ilearned from those other tumors, that for me there is only right now.  so thats all i can worry about   tada!  (hopefully didnt sound preachy?)

leaf

Mawhinney, jan and phew are right.  There are Very Few medications where Everyone has the side effects.

This study about absolute numbers of endometrial cancer on tamoxifen is from an old study of women who were taking tamoxifen after breast cancer diagnosis. Therefore, the maximum estimate of endometrial carcinoma risk is 2 of 402 cases (0.5%).http://www.ncbi.nlm.nih.gov/pubmed/8640670?dopt=Abstract  In this more recent study, tamoxifen was compared to anastrazole.  6 out of 3092 anastrazole users got endometrial cancer, and 24 out of 3094 tamoxifen users did. http://www.ncbi.nlm.nih.gov/pubmed/21087898 Different studies will give different numbers.

This  from the NIH.

Tamoxifen use is also associated with an increased incidence of deep venous thrombosis and pulmonary emboli. In several adjuvant studies, the incidence ranged from 1% to 2%.[86,92,106-108] Clotting factor changes have been observed in controlled studies of prolonged tamoxifen use at standard doses; antithrombin III, fibrinogen, and platelet counts have been reported to be minimally reduced in patients receiving tamoxifen.[109] The relationship of these changes to thromboembolic phenomena is not clear. Tamoxifen use may also be associated with an increased risk of strokes.[108,110,111] In the NSABP Beast Cancer Prevention Trial (NSABP-P-1), this increase was not statistically significant.[110]...

Tamoxifen therapy may also be associated with certain beneficial estrogenic effects, including decreased total and low-density lipoprotein levels.[118,119] A large controlled Swedish trial has shown a decreased incidence of cardiac disease in postmenopausal women taking tamoxifen. Results were better for women taking tamoxifen for 5 years than for women taking it for 2 years.[120] In another trial, the risk of fatal myocardial infarction was significantly decreased in patients receiving adjuvant tamoxifen for 5 years versus those treated with surgery alone.[119] In the NSABP-B-14 study, the annual death rate due to coronary heart disease was lower in the tamoxifen group than in the placebo group (0.62 per 1,000 vs. 0.94 per 1,000), but this difference was not statistically significant.[121] To date, three large controlled trials have shown a decrease in heart disease.[119-121] http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6#Section_488 (emphasis mine).

I am not saying you should take tamoxifen.  That is a very personal decision.   The possibility of breast cancer may be more or less fearful for you than the risk of endometrial cancer or emboli or stroke.  But its good to know as much as you can about the risks and benefits before you make your decision one way or another.

Bukki

Pattimay....I encourage you to talk to your health care providers and the doctor that prescribed the med, talk with him about your concerns and get your questions answered for you.....everyone has different health issues and what is best for each of us must be weighed by our DX and our other health risks. After long talk with my pcp and two oncology doctors about my own health concerns I opted out of taking Tamoxifen.....but that is me. Good luck in your journey.

phew

pattimay---in agreement with theaagreement of leaf: i adont trust tme medical folks much.  i think they have developed egos that are a bit out of whach simply because they do life altering procedures repeatedly.   i cant imagine the weight of worry that i amde a wrong dicision for my patient.  so, i am wary of their guidance.  i have found greater insught by reading as lany sites/studies/abstracts & postings from women who have immediate experienve.  beyond a dounbt i believe that each women has her own pawth and decision.   in my case, i dont dwell very long on an issue, cuz for me that is crazy making.  i read, idecide and then i ----.  but thats just me.  i wish you luck whaever and however you might decide

leaf

I trust physicians when I am pretty sure they know more than I do.  But I have several unusual medical conditions, and I appreciate knowing what the doctor's evaluation is based upon.  I want the final decision to be mine.  When there is uncertainty, I like to have an idea how much or little we know.

Some people don't feel that way, and have other decision-making styles.  Some want to have much more input and influence from their doctor, significant others, and/or friends. Some want to mix the two decision-making styles.

There is no right way or wrong way to make decisions, there is only YOUR way, the way that works for you, or is a reflection of your unique personality.

A second opinion at a major institution, where I did not like what I heard, spurred me to learn more.  In this case, my GP verified what I learned.

phew

yey you!  i applaud you for your method.  we are in a frightening zone with so much cantradidtory input good to make decisions, no?

vmudrow

pattimay - I was diagnosed last January with ALH and the oncologist also wanted me to take Tamoxifen for 5 years.  As I am older (49) I decided I was tired of all the tests each year and also talked to a couple of ladies I personally know and all 3 of them said they hated the side effects of Tamoxifen - so in May after talking to my breast surgeon I had NSM masectomies - no more mammograms, and no Tamoxifen.  I have been very happy with my decision.  My oncologist did say that most ladies he sees don't have many side effects from the Tamoxifen.  Good luck with everything.  hugs, Valerie

phew

tee hww   here i was thinking i am only 55!  perspective eh?    i've   not had bad effects SO FAR! (kieh harrah as we jews would say)  but i know that thats a SO FAR situation.     i think we all consider and reconside and study up on these frightenin issues     my decision to take the risk in only what seemed right for me and my history.   such an array of nonspecific help, np?      thinking, thats what is helpful about this forum.  its like a secret society that pulls each member up one hane at a time.    like, why didnt they tell me this before?