to tamoxifen or not to tamoxifen
Hi all, I'm new here, but have read a few posts over the last month. I don't have a whole lot of time to type right now, but I was wondering if some of you would be willing to give your opinions on taking tamoxifen. I am meeting with my med. onc. tomorrow to ask more questions because I am really not sure what I want to do. I am leaning toward not taking it.
My reasons being that I would have to change another medication that I am on (which would most likely lower my libido ;^) _, the menopausal like symptoms (fatigue, mood swings, hot flashes, cognitive imparement, etc.), and the risk of endometrial cancer and uterine sarcoma.
Plus my tumor was small 1.2cm and stage 0 and found by mammogram. And my surgeon took at so much tissue on my re-sectioning that I don't think there is anything left. (More than the path. report indicated, but she wanted to be thorough) Margins were clear.
Is it worth changing the quality of life now for that low percentage of lowering the risk later?
Is monitoring closely enough?
Any thoughts would be greatly appreciated. Oh, and I am 42 - so not young, but not the usual age for breast cancer.
Comments
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Dear Kat,
I am going through the exact same thing. My margins were clear and I was told that tamox is not necessary. I am going back to my breast surgeon to get more opinions. I would love to hear more posts on what others think about this. Good luck, I will let you know what I end up doing!!
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Just started rads today....I'm still unsure about the tamoxifen as well.
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Your pathology looks almost identical to mine, my area of DCIS was 1.3 cm. I too struggled with the decision to take tamoxifen or not. My med onc. left it up to me totally. I decided to try it, thinking that if it became problematic, I would just go off of it. I was very concerned about the side effects, not so much about endometrial cancer as, at age 53 I am still menstruating, which lowers the endometrial cancer risk since the uterus is still shedding its lining every month. I have had very few side effects, no hot flashes (if so they are extremely mild, but I really don't think I am having them). I have been on tamo. two full months now and my last period was lighter than usual; that is about the only side effect I have had and I don't mind that. I guess my reasoning is that if I didn't take it and had a recurrence, I would always wonder. I'm still not sure I will be on it the full five years.
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I found my meeting with the medical oncologist to discuss tamoxifen extremely helpful.
She was able to discuss risk reduction (because I was 40 when diagnosed, so young in breast cancer terms like you), she was more inclined to encourage me to try the tamoxifen but she would have been OK either way. She also was able to discuss the likelihood of side effects in my individual case (for example, she thought given that I had been on the pill for many, many years with no issues, the risk of clotting was minimal in my case). On the other hand, she thought because of some emotional side effects I had from the pill early on she thought I might have some issues of that kind.
I decided to try tamoxifen on the theory that if I had too many problems I could quit and because for me personally should I have to face breast cancer again in the future I would feel better knowing I had done everything to prevent. (I am a very risk averse person.)
I have been on tamoxifen for about 8 months now with very few side effects. I did have a couple days of extreme anxiety about a week in, but I've been fine then (maybe slightly more anxious than normal, but hard to tell if that is tamoxifen or life). Also, my libido is definitely lower than it was when I wasn't on the pill but similar to what it was when I was on the pill. (Who knew that my sex drive was artificially low all these years! Argh!) (Hope that wasn't too personal, just trying to provide complete information.)
I hope this helps.
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I've only been on it a week but I'm not noticing any side effects.
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I've been on it for a year and 3/4 and am doing fine. I was 42 at dx. I will do anything to lower my chances of recurrence. My cancer was IDC. Best of luck to you all.
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Such a personal decision, whatever you decide, make sure you have inner peace, because the second guessing and playing the "what -if" game is counter-productive. I am truly thankful to have been given options and have tried to make careful and educated decisions throughout this entire Nov 2009-May 2010 process.
Went through the same decision-making. I'm 45 (44 at diagnosis), very much still pre-menopausal, take zero meds. and zero med. problems before this one (thankfully), had lumpectomy and 30 rounds of rads, that completed ~ 2 months ago. Rad.onc. gave me the option to take or not take tamox., but said to wait until after rads. to decide. When asked what she'd do, it was pretty muich a coin toss (that would be 50-50, she said 60-40).
I have decided to opt out. Taking 1800+ pills to increase chances from 95% to 97.5% of no rec. in effected breast (that's the odds that were for my situation according to my rad. onc., each person should learn their own personal statistics) doesn't seem worth the potential endo/uterine/liver/meno.side effects to me. Many find inner peace in the ritual of taking that pill, but for me, I find inner peace in not taking the pill. Just like some find people, when given the option of lumpectomy with rads. or mastectomy chose the latter, because they find peace in that route; some even opt for the most aggressive surgical option of double mastectomy.
Everyone's medical situation and risk tolerance is unique, but I can truly say that I am very very happy to have chosen the lumpectomy-radiation-no taxoxifen path -- it feels right for me, but I did take the necessary times to let my head stop spinning throughout this so very stressful and overwhelming process in order to get to this point
Diagnosis: 11/1/2009, DCIS with 1.75 mm IDC, <1cm, Stage Ia, 0/3 nodes, ER+/PR+, lump with 30 rad zaps. -
Just wanted to add that since I had DCIS + LCIS, as well as (I think ADH) and ALH - with ALH found in the "healthy" breast when we did the reduction.....my recurrence risk is pretty high, and remains higher than average even with the Tamox. Bottom line - I couldn't sleep at night without the damned pill.
The only way I'd have gotten to a lower risk would be dbl mast, and when I was choosing a surgical path I had no idea the healthy breast wasn't perfectly healthy - so after I came back BRCA negative, I'd never have done a double.
The findings in my "healthy" breast are also what caused my med onc to go from "I won't push it on you, but you should consider it" to "you really ought to strongly consider it and I'd advise you take it."
In other words, when I got the final pathology, radiation and Tamox both seemed necessary in my case.
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sweatyspice brings up a good point, and we can see how all of us have our own stats and med. profiles that get thrown into this decision-making pot.
I should also add that my rad.onc. did say that if I went on tamox. it would be more for lowering the odds of having a new occurence in the "good" breast than in lowering the chances of a recurrence in the "bad" breast. The annual percentages are low, but since I'm "only" in my 40s, that did/does make me think. I am trying to be better mentally prepared (as best as one can be) that a new DCIS or something could happen in the "good" breast during my hopefully long lifetime. But then I just try to shake that feeling off and go on living.
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I'm still think about it myself, and would love to hear more about if people have real bad side effects. I've been taking Evista for two months, and actually think it makes me feel better--but there's not the scientific background on that one for protection against recurrence. Still, my oncs say I don't need either, but maybe I'd just LIKE it, a little less worry? But, anyway, for future ref, the Evista does seem to be drying up my periods a bit, which I like, and otherwise I've had no problems, no hot flashes, nothing.
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My thinking is that if it makes you feel safer it's worth trying.
If you hate it after 6 months then you can quit.
If you don't take it then you can't be quaking in your panties over what will I do if bc comes back!
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Has anyone heard that getting your ovaries out essentially has the same results as taking tamox for 5 years? That is what my oncologist just informed me...I have had benign ovarian cysts for as long as I can remember and will be looking in to getting my ovaries taken out. (I had my uterus out 7 years ago because of fibroids)
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I've heard that, Catherine, but I believe estrogen is still produced in other areas of your body. I'm sure someone else will know more.
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I am grateful for this conversation because I will have to make this decision soon. I also worry about the side effects. Quite frankly, I'm worried about feeling like I have PMS everyday for five years. That situation would be bad for everyone that I know. I realize that this sounds silly, but for me it's a very big deal.
Sigh...
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catherine---I lost my ovaries due to rupture (not by choice) and still continued to take tamoxifen as estrogen is still produced in the adrenal glands, skin and fat. I took tamox for the full 5 years and now I have been on evista for further preventative measures. (I am high risk due to LCIS and family history of bc--mom had ILC).
anne
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I chose not to take tamoxifen. The oncologist explained that tamoxifen lowers the chance of new cancer by 50 percent. He said the chance of new cancer forming is double the chance of "Jane Doe" with no cancer history. He said Jane Doe had a two percent chance of getting cancer, so my chance is four percent. Plus in my situation, the side effects for uterine cancer is greater because my mother had uterine cancer. So tamoxifen decreases new breast cancer, but increase the chance of uterine cancer. I chose not to take the chance with uterine cancer.
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wyldblumusic,
I have been taking Tamox for 1.75 years and do not feel like I have PMS....ever. I know everyone is different, but thats how it is for me. I was nervous too and decided to try it, figuring I could always quit. I'm still on it!
Good luck!
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I am 48 with 3 kids. My experience is the same as sweatyspice [hey I think I have ALH too!] and CTMOM1234---at first I was told by my onco that I could blow off the tamoxifen but when final path came back, I was told it would be better if I took it and at least tried it. If the SEs are too miserable, my onco says I can stop without feeling I've given myself a death sentence but if there are no SEs, taking it is as much for my "healthy" boob as the other boobformerlyknownashealthy. She also tells me that most of her patients don't have any mega problems with SEs on tamoxifen.
so in a couple of weeks, I go back and get my prescription and off we go. . .
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I am trying to decide on whether to have my ovaries removed instead of taking tamoxifen. I asked my oncologist about this as a treatment because I am scared to take the tamoxifen for 5 years - Hate all those side effects. He said that it is a good alternative to taking the tamoxifen. I asked him to consult with his colleages and they agreed. He also said that your body does produce some estrogen in other places (fat, etc.) but very, very little. Ovaries produce all or most of the estrogen in the female body. I am going thru radiation treatment right now so I have to make a decision soon. I asked him about opting out of both ovary removal and tamoxifen. He said it was too risky to do nothing! So, I must decide on which to do. Think I am leaning towards ovary removal. Good Luck with your decision.
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I don't know anything about ovary removal but my understanding was that many of the tamoxifen side effects also come from ovary removal. Has your doctor discussed side effects of ovary removal with you? Definitely something to explore before surgery. Tamoxifen you can stop if you don't like, but once you've had your ovaries removed there's no going back. Not trying to dissuade you, just want to make sure you have complete information. (And am interested in what your doc says about side effects too.) Best of luck whatever you decide.
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Hi, I am new here too. I just finished up my HDR 6/11/10. I saw my doctor yesterday and we had the tamoxifen talk. I don't think it would be the right choice for me. My husband and I are going to meet the oncologist to talk more about it. I have never been on any medications. I feel like I have had more done to my body in the last month than in my 51 year life! This whole DCIS was a shocker for me, as it is for all of us (microcalcifications found on a routine mammogram). I have been reading all of your posts (thanks!) and will continue to do more research. Here's some good news - I am allowed to get back to my "normal" routine, so I am taking my running partner (my crazy dog!) to the trail today. Thanks for all the info.
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Enjoy your run, DCChef! I know my runs after lumpectomy and again after radiation were slower than normal (and had some walking involved, esp right after lumpectomy, when I was sore -- someone on another thread on this site recommended doubling up sports bras and it really helped) but great to get back out there. And maybe you won't have lost as much fitness as I did during that time. Just don't beat yourself up if the run is hard. You'll get back to where you were soon!
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HI Aloha Girl. K (the dog) and I successfully ran 5 miles. It felt good. It was much slower than our usual pace. I wanted to take it easy. I did double up on the sports bras, even though there isn't much there, any movement can be uncomfortable. I hope the tamoxifen continues to sit well with you (no SEs), How soon after your surgery did you start the tamoxifen? I am wondering how much time I will have to think about it before I decide.
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I'm glad the run went well! Excellent! There was a long time for me between surgery and Tamoxifen. I had surgery in April, rads in May and June and didn't start Tamoxifen until September or maybe even October (I can't remember for sure). I had been on the pill and had to get an IUD and go off it before starting Tamoxifen, plus my original pathology wasn't tested for ER/PR status and the oncologist wanted to check that before recommending the Tamoxifen, and it took me a while to get in to see the docs in my hometown (I had surgery and rads and a consult with a med onc in California but am now being followed at home in rural Hawaii). So, I think you have some time! At least no one seemed concerned in my case that it was a while before I started the Tamoxifen.
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Hello everyone,
I'm new on this discussion group. I just finished rads on 6/22. And I am one month into taking Tamoxifen. I too was totally petrified of taking Tamox. My onc told me that I should meet with a surgeon to discuss the oopherectomy. Before the appt., I researched the side effects of ovary removal VS Tamoxifen. I ordered a free book about the surgery and read about the SE also.
With all the info about Tamoxifen, and all the info about the surgery, I made the decision to take the Tamoxifen and see if I can handle it. I have been pleasantly surprised at how mild the SE's are. I had overblown and worried myself to death about how bad it was going to be, and nothing happened ??? However, at times, I am very emotional and quick tempered. But, nothing like I had expected. I'm not happy about taking the dang pill, but for now, I have decided to forgo the surgery, as I've had so much done to me, that I really need a rest from all of it.
The one thing of note that my research offered was this: If you are a young, pre-menopausal woman still having a period, and you have the ovary removal, the side effects are much more noticeable and severe as your body goes INSTANTLY into menopause. In my case, I had chemo induced menopause, no periods for 9 months and then began the Tamoxifen. I also had bloodwork to determine if I was actually menopausal {and I was }. So, taking the Tamoxifen, or getting ovary removal at this point would "potentially " be less of a shock to my body.
To sum up my experience: I will keep ovary removal on the back burner for now, continue with the Tamox and hope for continued success with the pill. I'm glad I did my research and felt like I knew what to expect from each of the choices.
Hope this offers a little bit of help.
Georgia in Alabama
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I have been thru both--took tamoxifen for 5 years and have had ovaries removed (not by choice--ruptured). Given the choice of the 2, I would take the tamox in an instant. My SEs were very minor until I had my surgery (TAH/BSO)--then immediate surgical menopause hit with a vengeance, the first year was very rough; SEs leveled off, but I still have hot flashes, difficulty sleeping and achy stiffness over 5 years later.
anne
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hi,i've now been on tamoxifen for 6months and have never felt better.no side effects at all except for hot flashes,which are only to be expected during the menopause anyway.also, i have been told by my oncologist that the more flashes one has the better the tamoxifen is doing it's job ! food for thought ! like a lot of you i was'nt looking forward to taking it,as i'd heard so much about the possible side effects,including weight gain. in fact i'm still 7lb lighter than i was 12 months ago.i like to think i'm doing everything possible to lower my chances of a recurrance.
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HI! I was diagnosed in January 2007 with DCIS. I had a lumpectomy with radiation. I have been on Tamoxifen since September 2007. Only 2 years to go!! I decided to do it, because I was 38 at diagnosis and my mother was 48 when she was diagnosed. She was also pre-menopausal and she had a 4 cm tumor with 11 out of 20 nodes positive. She is 23 years from diagnosis and still telling me what to do (thankfully!!). We both came up negative for BRAC but I decided it would be good to have any odds on my side. I will be honest, the Tamoxifen has been tough at times. I have been able to manage it much better over the last year, because I started going to Acupuncture in March 2009. The acupuncture has helped immensely with all of the side effects that I was experiencing. Primarily, it has helped to get my period back on track which in turn means that I have less pms symptoms and the pesky menopause type symptoms. It has made all of the difference. I wanted to share my experience about acupuncture, because it has helped me learn to manage the side effects. I have decided to hang in for the five years and it was great to find a way to do it. I think it is important to find ways to help manage the side effects if they become problematic. Hopefully they will not. But I know that exercise, diet, medicines can really help. I am adding acupuncture to that list!! Taking Tamoxifen was the right decision for me, but don't feel pressure either way. It needs to be your decision and one that fits your life.
:-)
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Hi, I am grateful for this discussion. Curious -are there BMX women here who had Tamox?
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Hi. I finished my mammosite HDR on 6/11/2010. My last big decision was tamoxifen. I am 51 and on my way to menopause, 3 periods over the last year. My husband and I opted to consult with a hematologist. Both my surgeon and radiation oncologist said they would recommend it, but the final decision would be mine. The consultation was very helpful. He explained the pros and cons and then specifically looked at my case and said the most he would do is "softly recommend" it. Meaning that statistically it would not offer a huge advantage for me. He then listened to my side. I explained that I have tried to keep myself healthy through diet and exercise. I very rarely take more than 1 motrin when I have aches and pains from working out. I have never been on any medication. I added that I didn't feel comfortable taking a drug that with potentially serious SEs. I think mentally it would drive me crazy. All that being said I am saying no to tamoxifen and getting on with my life. Good luck with your decision.
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