Does anyone say no to Tamoxifen

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  • eliz46
    eliz46 Member Posts: 71
    edited October 2009

    Hi PS73 its eliz46 from the july chemo group.  its nice to see you here. there are so many different views here. i am still deciding what is best for me tamox or alternative. i am a very health consious woman. when i found out i had bc. it took my whole world and turned it upside down.  i have come a long way in 5 months . a left massactomy 1positive lymph node lots of healing time.  4 months chemo... now a decision.....i have no idea ---all of us are different

  • sammygrey44
    sammygrey44 Member Posts: 62
    edited October 2009

    I've been reading through this board and what a decision to make!  I've been posting at the ILC board because that's my diagnosis and I'm trying to learn -- just began this journey on 7/27/09.  I have my port and will begin chemo (TC x 6) on 10/16/09.  I will follow chemo with a bilateral mastectomy and radiation.  MY GOSH!  Isn't that enough!  I've been told by my breast surgeon that I'm probably stage IIa -- I have 2 out of 3 nodes that were positive for cancer.  I'm just not sure that I'm going to want to endure anymore after this.  I am 41 and healthy. . . except for cancer, ha, ha!   I don't smoke, drink a little, and I'm a decent weight (5'6" and 128 lbs).  I"m going to be REALLY researching Tamoxifin and checking out this board. . . I have some time to decide.  Thanks for all y'all's posts and information.  I feel for those who are on the fence, and I hope that whatever decision one makes is the right one -- then again, what is "right."  I guess we have to go with our gut and hope for the best!

    Take good care,

    Sammy

  • orange1
    orange1 Member Posts: 930
    edited October 2009

    Debbi -

    You could try it for awhile.  If you can't tolerate it, you can always stop taking it.  Everyone's reaction seems to be different.  Some get intolerable side effects, others, including me, tolerate it pretty well.

    Sorry to hear about your husband.  That really stinks.

    Hugs, Jackie

  • Luna5
    Luna5 Member Posts: 738
    edited October 2009

    I think the reason my unopened prescription for Tamoxifen is still in the drawer is because I don't have any way of knowing whether I have any cancer cells it needs to get or whether I will have any side effects at all or whether I will have intolerable side effects that will go away if I discontinue or whether my intolerable side effect will be a stroke.

  • seaotter
    seaotter Member Posts: 1,083
    edited October 2009

    Luna - I felt exactly the same as you. I got my prescription filled then left the bottle sit on a shelf. I would look it and snarl. Then got the guts to start taking it but at half the dose. I was on it for 2 weeks and all hell broke loose. I felt horrible. If you want the details I will tell you but for now I will spare you lol. My opinion is if you have terrible side effects your body is telling you to stop so I stopped and never looked back. You will never know until you try. I am taking dim and all sorts of other supplements. Check out breastcancerchoices.org I found that site to be very helpful. You have to do want you feel is right for you. My surgeon told me she never gives tamoxifen to women that had postpartum depression because they do not tolerate it well. So true for me.

    Patty

  • Luna5
    Luna5 Member Posts: 738
    edited October 2009

    Thank you Patty.  My onco has my CYP2D6 result but I guess I won't know what it is until my appt at the end of the month.  If I am a extensive metabolizer I don't know what I will do especially since the side effects would probably be greater.  I know its a no if I am a poor metabolizer and maybe if I am an intermediate metabolizer.  And maybe I don't really care what it is and am just hoping to use it as an excuse for my doctors' benefit.  I have researched and am putting a list together of all the natural aromatase inhibitors and am trying to overdose on those.  I'm still not convinced that in all cases stopping Tamoxifen undoes any damage it has done.  I tend to be the person who gets bad side effects.  You wouldn't believe how long it took to get me on a blood pressure medicine.  Since no positive nodes were detected, I can argue just as hard that I have no breast cancer cells that made it to some other location as I can argue that it is technically possible some could have gotten through without the lymph nodes doing their job and grabbing them.  Also, there are chest lymph nodes that were not sampled although my research says it is rare for upper outer quandrant tumor cells to move on through by way of the chest lymph nodes.  I know, I know, I should be thankful that thanks to Oncotype getting me out of chemo, all I'm having to do right now is struggle with this "simple" decision.  And maybe I am being greedy in wanting to stop doing things that cause the need for more things.  I've had 2 surgeries for TE infections and now have to completely start over with surgery to put in the TE on my prophylactic Mast side.  The cancer side is doing fine just waiting around on the other side to catch up.  Go figure!  I'm still researching the connection between root canals and BC.  I've been going through procedure after procedure for the last 2 years to try and save this tooth.  They even drilled through the bone to chop off and refill the bottom of the root canal right before my DBL Mast.  The dentist says the tooth is healing, but I'm still worried that it is the source of the TE infections and possibly the BC in the first place.  I'm sure being on antibiotics adnausium for the tooth and then these other infections has taken its own toll.  I'm so glad I didn't get an infection when I had my Hysty/Ooph in July.

  • seaotter
    seaotter Member Posts: 1,083
    edited October 2009

    Luna I pm'd you.

  • PAV
    PAV Member Posts: 5
    edited October 2009

    Dawnbelle, I love it!!!!  

  • inspiewriter
    inspiewriter Member Posts: 876
    edited October 2009

    For those who were on Tamox and then quit, did you go in and see your onc and tell him or her? Mine wants me to come in so that my Rx can be renewed (I've done 4 years) but if I quit, is there any reason to still go see the onc? My last m'gram was fine and I see my gyn yearly.

  • eliz46
    eliz46 Member Posts: 71
    edited October 2009

    You know what  i have always gone the natural root my entire life .......Cancer is not something to fool with havent we all been through so much ........i have decided to take the tomoxifen ...i have done alot of research,  hummmmmm i am going to live a happy life and not worry. For all of you useing projestrone cream from the health food store, lol i used it and yeah i still formed cancer...

  • Merilee
    Merilee Member Posts: 3,047
    edited October 2009

    Not that I can think of

  • Bigapple09
    Bigapple09 Member Posts: 440
    edited October 2009

    The choice to take tam or not has to be based on your life and family experience. Before I was diagnosed in 2002, I always said, no, no I was not going to have rads and no I was not going to take tam.

    When I was diagnosed the Dr.s told me the options that were available for me, a pre-menopausal  37 year old  BRCA I ER+ woman, from a family where every woman on my father;s side (except 2) have all not only had BC, but had a second BC.

    With the help of the genetics department I did a detailed medical family tree. Based on what the tree showed, each woman had a right side cancer, all before 40, and within two years also had a left side cancer.

    In discussing treatments, it turned out that no one had taken tam, no one had an ooph.

    I really did not want to get BC again, because my fear was that it might not be picked up in time and I would die.

    I did the rads and I did the tam, and for me, there was some leval of comfort in knowing that there was at least a chance that something was protecting me from my dismal genetic make up.

    Well, its 2009, and I finished the tam in June of 2008. I do not have cancer, thank G-d. In January 2009 after being off the tam for 6 months I had a big scare with a BIRADS V for multi centrac multi focal  and after the biopsy came back clean, I opted to have bilateral mastectomy and recon, if felt like I had just been given a get out of jail free card, because things did not look good.

     In my family, based on out history and my BRCA I status tam was the right choice, it bought me seven years with my breasts and my family, and while my breasts are gone, my surgical options in 2009 were so much better than they were in 2002. In 2002 I was told no way was I a candidate for NS / SS, and even the studies on NS were not great in regard to tissue morbidity. In 2009 not only was I a candidate for NS/SS but also to have IMF incisions to hide my scars. It also bought me time to decide if I wanted to expand my family and time to get used to the idea that I would one day allow a doctor to take out my ovaries. This is big for me, because I have a heart condition that is kept stable by my pre-menopausal status, also, my family (darn famly) has a gene marker for hemonemacrotosis, which leads to organ failure form excess iron accumulation, menstruation keeps that at bay.

    My side effects from tam were mild and they went away. I was very lucky. The feelings of rage and depression that i have felt since January (way post tam) have been a result of dealing with the fear of being sick again and the fear and reality of losing my breasts. It is different for everyone. 

     So while tam may not be right for some, it gave me time. I think we need to remember that this is a safe place and we need to temper our comments on the boards so that everyone feels safe.

    I hope everyone finds the answer that works for them and that everyone stays healthy and happy.

    Wendy

  • ruthemma
    ruthemma Member Posts: 1
    edited October 2009

    Hi i have been on tamox for 14 months, the worst side effect for me has been the weight gain, 3 stones and don't seem to be able to shift it... My other concerns are that it can cause other cancers. Also my joints and bones hurt,  But i continue to take it...not sure for how long tho. Ruthemma. 

  • svz
    svz Member Posts: 7
    edited October 2009

    I too am being advised to take Tam even with a bi-lat mast and low onco score (15).  I am only 38 with 2 young children and really prefer natural remedies.  I am reading The Cure right now and was convinced I could prevent furture cancer through my diet and natural supplements.  After reading through lots of these posts, I am mixed.  I want to live a very long time and want to do the thing(s) that will help me do that.  Maybe Tam will.  I've read a lot about the SE's of Tam but am much more worried about the long term effects.  From what I understand, TAM blocks estrogen from all cells/organs in your body, not just the potentially cancerous cells.  I don't feel like the medical community knows what it does to your brain, heart, liver, etc. when someone my age blocks estrogen from those things for 5 years when my body would normally be supplying estrogen to everything.  Everything in your body has an estrogen receptor on it. Tam blocks all of those estrogen receptors.  What happens long term???

  • Dawnbelle
    Dawnbelle Member Posts: 696
    edited October 2009

    This study posted above was done on using Tamoxifen as a preventative for healthy women.NOT in women with breast cancer. PLEASE make sure you are providing accurate information to women when their lives depend on it.

    Not to mention it is 20 years old.

  • vivre
    vivre Member Posts: 2,167
    edited October 2009

    The point of the article was that Tamox has been controversial since the beginning, but is still prescribed nonetheless. It has been controversial all along, and the drug companies kept touting it until they happened upon the AI's. In fact, Arimidex started out as a chemotherapy for stage 4 and when it showed to decrease tumors, it was hurried onto the market as the new answer to tamox for all women, even healthy women, as a "prevention". I have read the arimidex study. It compares women taking tamox with women taking arimidex. It does not compare women not taking any drug, nor does it compare women who choose any alternative therapies. And (coincidently?) Arimidex was rushed onto the market just as the patent on tamox ran out. These studies are done by the drug companies so they are always slanted to give themselves a positive outcome.

    Dawn-I am beginning to wonder about your motives are on these boards. You seem to have targeted a few people lately with insulting comments. I have no desire to argue with anyone, least of all you, so I will ignore your comments from now on. I just wanted to respond to my post because you seem to be attacking whatever I say just to stir up trouble. You blasted me in another post to do the research. I agree with you totally about this, and I tell people this all the time. I do not post for people to take MY advice, I do so because I find information that I think might be relevant to other's questions, just as other people do for me, which I always appreciate. You are right, we all need to make our own decisions based on our own research. I say this over and over. We all have very difficult decisions to make, and it is best to make them with as much information as we can find. I think the source above, from a UIC doctor who has dedicated his work to preventing cancer was a good source.

  • Dawnbelle
    Dawnbelle Member Posts: 696
    edited October 2009

    How did I insult you? These women are asking if they should take Tamoxifen for breast cancer & you post an 20 year old article about Tamoxifen as a preventative drug in high risk women. Apples & oranges.

    As far as progesterone? You have yet to explain why you feel the need to tell everyone that yam BHRT is inferior to your progesterone. OR where you think your compounding pharma is getting it. Milking ovaries are they? That was not an attack, that was a legitimate question.

    I have targeted no-one. I said the post about Suzanne Somers was a lie, IT WAS. I also said that the treatments they are providing us are 50 years old & unacceptable. Also true. I also provided current statistics to back up my post. Not a 20 year old, unrelated article. maybe you should go back & re-read that thread, who was attacked?

    By all means, ignore me & question my motives. I'm here to recruit soldiers for my anti-God group who will take over the world with one boob, black cats & black magic. MUAH HA A HA HA!!!

    Careful, on All Hallows' Eve we all jump off the roof & FLY!

    I have been here since May & I have mixed words in ONE thread. I also have received over 75 PM's at this point saying I am RIGHT, treatments are not working & it is time for change.

    Be sure to tell the moderators I have a different opinion than you, maybe they will ban me.

  • rgiuff
    rgiuff Member Posts: 1,094
    edited October 2009

    SVZ, tamoxifen doesn't block estrogen in the uterus or the bones.  In those areas, it's known to actually have a pro estrogenic effect.  As for the other areas all around the body, I'm trying to find information on whether it blocks estrogen or not, but I can't find anything written.  I don't think the scientists even know for sure where else it blocks estrogen.  All I can find is info stating that it blocks estrogen in the breast tissue and/or in breast cancer cells and I've seen a few things that mention that it blocks estrogen in the brain cells.. 

    Have you found anything written on this?

  • Luna5
    Luna5 Member Posts: 738
    edited October 2009

    Rose, I also hope someone has the answer to this.  So far, I have not chosen to start Tamox precisely because I don't have the answers to the questions you refer to AND because of all the stuff I do know about Tamox. and no one has been able to tell me my % risk that a cell got away with 0/5 lymph nodes.  My onc wants me on it even though I am postmenopausal.  I had a DBL Mast and Hysty/Ooph.  So, what you said about it blocking estrogen in the breast tissue AND/OR in breast cancer cells really concerns me.  OR won't work for me.  Having had the DBL Mast, the only possible reason for me to take it would be that it MUST block estrogen in breast cancer cells.  If it doesn't block estrogen in bones, how does that impact the prospect of bone mets?

     The things I have read left me thinking that Tamox attaches itself to breast cancer cells so that the estrogen can't attach and feed the BC cells....and that AIs work by getting rid of the estrogen.  But that over time the cancer cells can learn to thrive on the Tamox and the person will have a cancer surge as a result which is why Tamox is not given for more than 5 yrs.    If this is really wrong, please tell me so I won't be spreading false info.  These decisions are hard enough without me contributing incorrect comments.

  • svz
    svz Member Posts: 7
    edited October 2009
    rguiff - I do not have anything written. That data was given to me verbally by a nutritionist who beleives it is better to change the "bad" estrogen in your body to "good" estrogen (which apparently doesn't feed ER/PR+ cancer cells) through diet and supplements like DIM and others.  Does anyone know exactly how Tam really works and if it does block all estrogen receptors in your body?  If it does only block estrogen in the breast tissue and I had a double mast it wouldn't make sense to prescribe it to me, right? Very confused! 
  • Bigapple09
    Bigapple09 Member Posts: 440
    edited October 2009

    From what I remember it blocks the estrogen receptors in certain types of tissue. From the five years I was on it, I can tell you that I continued to have regular periods, however, I had no cramps and my breasts did not swell or hurt during my cycle. Once I went off the tam cramps and sore boobies were back with my cycle.  There were studies that had shown, in post menopausal women that tam had an impact on reducing osteoporosis, There was no data on the anti-ostio link in pre menopausal women.

    I don't know why a Doc would suggest tam in a post menopusal woman who had a bilateral, unless it relates to a an issue of a BC appearing in any of the remaining breast tissue (there is always some).

    I sat with a client yesterday who was post men, and had a mast, (skin sparring) and she actually had to have a second full mast of the reconstructed breast because she was one of those rare cases where there were bc cells in the epidermal layer, and they metastasized, she is the only person I had heard of this happening too. She also told me that she wishes she had been more aggressive when first dealing with the cancer, because now its in her bones and she may die. Sometimes I forget that people still die from this, and moments like yesterday refocus me a little and make losing my breasts a little easier because I still get to wake up tomorrow.

    You may want to interview other oncologists who deal only with BC. I have seen a lot of people who relied on the advise of a dietitian, an herbalist or a nutritionist, who had all the best of intentions, but did not have a wide enough net of experience to be able to say "ok, this works for most people, but because of a, b, and in your case this is risky". Get lots of information, ask them what diagnostics are used to  prove that the course they are recommending works.

    My neighbor had BC and she and I were talking after my diagnosis. She was telling me how her herbalist said she was cancer free. She had been diagnosed with a stage III bc, she said she never had surgery, chemo or rads. I was amazed, and I said, "wow thats amazing so you did this and now all of your films and labs are clear." She said "oh, no, he does not believe in doing scans or blood work, he evaluated my internal balance and found no cancer."

    There are lots of good non-traditional things out there, but, you always have to be careful and be your own advocate, and sometimes its a blend of both the traditional and the non-traditional that works for you, I think if a doctor told me today to do tam, now that I have no more breasts, I would be very skeptical unless they could give me real numbers and explain my risks.

    I hope you find the answer that works for you.  : )

  • kim2005
    kim2005 Member Posts: 49
    edited October 2009

    I've been on tamoxifen for about 3 1/2 years now and I wanted to say NO in the beginning, but out of fear, I decided to take it.  I had zero side effects for a very long time.  Last fall, I began to experience severe vaginal atrophy (I was 46 and premenopausal) and told my oncologist about this and he said that tamoxifen blocks the estrogen everywhere, including the vaginal tissues.  He told me that the Estring would help and within several months, I felt MUCH better.

    Over the past four weeks I've had severe abdominal pain and an ultrsound and a CT scan show very thickened uterine lining (18mm), fibroids and suspected endometrios.  I visited my oncologist again yesterday and he said that tamoxifen may be causing this.  I am looking at a hysterectomy as this will eliminate the possibility of uterine cancer, eliminate the fibroids and endometriosis.

    Lastly, I've had my estrogen levels checked from the beginning and they go up every time I check.  It was so baffling (and scary) when in January my numbers were over 900.  I was told by my OB and oncologist that tamoxifen CAN make these numbers go up but the hopes are that the tam IS blocking the estrogen from your breasts.

     All pretty crazy and it really makes me hope that a better solution than tamoxifen is on the horizon for women who will face BC in the future.

     I've seen a nutritionist since the beginning and take many beneficial supplements, do yoga, and am otherwise healthy.

    I don't think there is a good answer as to whether someone should take TAM or not.  I just know that I did not develop any symptoms for a very long time.  I still consider having my ovaries out as well so I could stop the TAM, but right now my OB and oncologist are discouraging it. 

    There are no black and white rules with the cancer business, just many shades of gray.  We all make the best decision for us at the time and hope for the best.  We all want to live a long, healthy life.

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited October 2009

    I am post-menopausal and on Tamoxifen. I have osteoporosis. My endocrinologist is pleased, because Tamoxifen lets me avoid the various bone density drugs like Femara.

    No drug is side-effect free. However, I'd be willing to do a lot to avoid cancer, and what I was doing before obviously didn't work.

  • Luna5
    Luna5 Member Posts: 738
    edited October 2009

    Kim2005,  When your onco said "the hopes are that the Tam is blocking the estrogen from your breasts", did he/she say anything about if it blocks BC cells that may have gotten away without leaving evidence in the sentinel lymph nodes and are lurking somewhere else waiting to feed on estrogen???????  I realize that with mastectomies they can't get every tiny bit of breast tissue.  But, since I even lopped off the good breast; I've decided to not do anything to address the possibility of cancer coming back in the breasts.  If that turns out to have been shortsighted then I will have to deal with that later.  Right now, I am focussing on ....who can tell me what my REAL personal risk with my risk factors is for this same BC popping up somewhere else and whether or not I should take a drug just in case there is a BC cell that got away.  I've known plenty of people who have gotten the "rare" side effects from various drugs.  One almost died from Celebrex and one had pulmonary embolisms from 6 months of birth control pills.  So, I no longer ignore the "rare" side effects warnings.  In the same sense that the Oncotype test said that I would not benefit from chemo, before I take Tam or and AI, I need more info on how much it would improve my risk percentage.  According to the Oncotype test, my tissue says I have a 3% chance of distant mets assuming that I am on Tamox.  So, does that mean I have a 6% risk if I don't take Tamox?????  This is my quandry.  I have read that there are rare instances of people whose BC cells feed on the Tamox.....so....do I assume I have wayward cells that need to be stopped....or do I assume they got it all by removing both breasts?????  I am trying to do all the natural stuff and have quit everything I can think of that could contribute to future estrogen driven cancer.  But, in the meantime, the Tamox remains unopened and I can only find studies that "lump" so many people together in their groups that the resulting stats aren't specific enough to my situation.

    If anyone has seen more definitive statistics anywhere, please direct me to them.  Thanks.

  • vivre
    vivre Member Posts: 2,167
    edited October 2009

    Some great comments from you gals. It just goes to show how many of us just feel we are not getting straight answers. I have found the best explaination of the whole breast cancer and estrogen connection is from Dr. John Lee's book, "What Your Doctor May Not Tell You About Breast Cancer". This book will give you details about the drug controversies, the types of estrogen, good and bad, sex hormone receptors, and preventative measures. He believes that we naturally become estrogen dominant as we age because our progesterone levels go down. Progesterone levels also have to do with miscarriages and vary during childbearing years, which may explain why women get bc during that time.  There is a lot of wonderful common sense advice, based on his research, and his successful treatment with hormone balance, instead of blocking. I could expound on all of this, but I think it is just best to read this book. Every doctor who now believes and practices hormone balance follows Dr Lee's guidelines. I think you will be pleasantly surprised at how many of your questions will be answered in this book.

    As BigApple says, it is important that you do not go it alone. I doctor shopped for months and months, going to different doctors and learning from them all, until I found one who really understood the whole hormone balance thing. I agree with her, that a nutritionist is not to be relied on for any diagnosis, but I found a chiro who specializes in nutrition who really helped me to change my eating habits. She did blood tests that got me started on figuring out which direction I should go. I went to her, because I was so afraid of taking the drugs, and she gave me the confidence that I could lower estrogen levels with diet and exercise, and I did, proven by my blood and urine tests. But I wanted more and that is why I sought a hormone specialist who does urinalysis and interprets them. This doctor is helping me to balance everything.

    The whole hormone system is inter related. It involves Vit D levels (yes D is a hormone), your adrenals, thyroid as well as sex organs. A hormone test will examine all of these. By using these tests, and seeing the difference in my levels, it gives me confidence that my body is balanced and will be able to remain cancer free.I am always tweaking things, with this doctor's help. A doctor with who really understands hormones is hard to find. I found mine through my compounding phamacist. But it is essential that you find one.

    Kim, and any of you with fibroid issues, I would recommend you look into iodine. We have a thread here with lots of links and our experiences. I think that iodine deficiency was a leading cause of my bc because if we have no iodine, which is stored in the breast tissue, our cells become vulnerable to cancer. A great book to read that explains the iodine and thyroid connection to breast cancer is by Dr. David Brownstien. It is called "Iodine, why you need it and why you can't live without it". I cannot tell you how much better I feel, and how my breast tissue has changed since I started his protocol.

    While these forums are great for all of us to exchange information, I still think it is really important that we all research and read as much as possible before making these decisions. We need to be confindent that whatever we choose to do, we understand what could happen and that our decisions are based on real facts, and give us the confidence to be cancer free. We also need to keep looking until we find doctors who can answer all of our questions, not leave us in the gray area as Kim says. We need to advocate for ourselves and not accept any one doctor's advice as gospel. Remember their hands are tied. They must follow a standard protocol, such as prescribing tamox, or they could be sued. We however, do have lots of other choices. I know how much getting rid of sugars, alcohol, and junk food and exercising daily lowered my weight and my estrogen levels. I know how much my Vit D levels improved with supplements, and how my energy levels improved with iodine. My tests prove it. There is lots we need to do and be more proactive. Take charge of your own health ladies. It is very empowering. And it will give you great peace of mind.

  • BobbiC
    BobbiC Member Posts: 14
    edited October 2009

    I said no to taking tamoxifin.  I weighed all the information--and my dr. gave me all the facts--and I didn't want to take a drug for 5 years that has a potential risk of uterine cancer--that is taking a drug to insure against breast cancer but puts you at risk for another.  I am cancer free and a 3 year 6 mos. survivor and I feel good about my decision.

  • kim2005
    kim2005 Member Posts: 49
    edited October 2009

    I'm getting a lot from reading this thread and I agree so much with what you say Vivre.  I've always been such a healthy person and even since surgery nearly 4 years ago, I see my oncologist, a nutritionist and a biodidential hormone OB doctor.  My oncologist has been in his field for over 30 years and is very well respected in the community.  He knows about all the supplements I take and knows I'm on bio-progesterone and testosterone and supports me.  Although I supplement with 2000 i.u. of Vit D, my levels still don't go up much past 35 so maybe I need to increase.  I did read that book on iodine early this year and even took the test and ordered the iodine.  BUT I have to admit, with all the stomach issues I've had the past few months, I haven't been good about taking it.

    I truly do wonder how much of the problems I've encountered are related to the tamoxifen. I think it's quite disconcerting that this drug has made my estrogen numbers go UP over the years, rather than down.  On a good note perhaps, I have skipped a couple periods and my latest estrogen numbers went way down (about 150).

    I fully support anyones decision to take it or not take it and have friends in both camps.  I didn't have the courage to say no to it.  My daughter is 6 now and was only 3 when I got b.c and I wanted to do all I could to ensure longevity.  NOT that I'm sure tamoxifen does....it's all a crap shoot. 

    I've been having abdominal pain but last weeks CT scan is clean.  An U/S showed a thickened endometrium (18mm...above 10mm is considered abnormal) and fibroids and suspected endometriosis.  I'm going to have an upper GI with biopsy soon to ensure it's not a stomach issue.  The oncologist said yesterday that the tamoxifen very well could be the reason for my pain (due to uterus, fibroids, endo).

    I admire your courage Bobbi and Vivre for not doing tamoxifen and Luna, I know what a struggle it is to make the choice.  I waited 6 months after my mastectomy before I opened that bottle.  I didn't encounter any problems for 2 1/2 years on it and really felt great. 

    Today I was in a small shop and the owner told me he was feeling drained and I asked why and he said he was undergoing chemotherapy for lung cancer and was told he may only have two months to live.  I didn't know this man but we spoke for almost 1/2 hour and I tried to lift him up.  We've all had the fears and the questions about "What IF my life was cut short..."  Talking to him today helped me to remember the gratitude for each day. 

    Good health and long life to everyone, no matter WHICH course of treatment you choose!

  • michele37
    michele37 Member Posts: 19
    edited November 2009

    Does anybody know what the chance of a recurrence oustide the breasts  is for someone with my diagnosis? I am afraid to take the Tamoxifen. Onc offered lupron shots and Arimidex instead. I am afraid of that too. I would rather have another surgery and radiation or mast than go on the therapy. It frightens me that they do not know how long to keep people on Arimidex and that they do not yet know the long term side effects.

  • seaotter
    seaotter Member Posts: 1,083
    edited November 2009

    michele, come to the "natural girls" thread. Most of us there do not take tam or arim. You will learn a lot from the wonderful ladies there

    Patty

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