No Tamoxifen and recurrence (?)
Hello! At our last meeting, my oncologist prescribed Tamoxifen for me. She knows that I am not comfortable taking it (nor do I want to take AIs). I am aware that many people take it and are just fine, however, my gut feeling is that the benefits (which are not huge) do not outweigh the risks for me. I have not decided on radiation, though I am slightly leaning towards it. I would rather not do it, but given that the medial margin was non-existent, I am not entirely against it.
My question: for those of you who refused Tamoxifen and didn't take so much as one pill: How many of you had a recurrence? How many have had no recurrence, and if you don't mind, could you tell me how long you have not been on Tamox?
Please be assured this is only for my personal use. I am just trying to figure this out and knowing that there might be many who have not taken Tamoxifen and not had a recurrence will be very reassuring to me.
Thanks so much!!
Comments
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Hi Jen, I took 7 pills. Does that count? I was dx in 2007. Three years later - so far, so good. That said, I do a lot of alternative options to prevent recurrence.
Lisa
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Jen,
check out this calculator to assess the % protection tamox can give you. granted it doesn't have local recurrence stats - only survival stats. The radiation you are considering is your best bet for local recurrence protection. I didn't think radiation was too bad, despite burning a fair amount.
BTW, I took Tamox for 6 months without too many side effects. I may go back on it, I'm not sure, I went off to go back on my antidepressant of choice which inhibits tamoxifen. I've been off it for 9 months.
Dayla
http://www.lifemath.net/cancer/breastcancer/therapy/index.php
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Jen, I took Tamoxifen for 1 month, the SE for me were really bad. I made the decision to stop but may try something else once I hit menapause. I sometimes second guess myself but what good does that do, I try not to look back as with most things in my life.
I may regret it someday but then I really won't be sure if my choice of not taking Tamoxifen was the reason for a recurrence if I do happen to have one in the future.
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Thank you! I have looked at the calculator and that is definitely figuring into my decision. For me, I just don't think I will realize a huge benefit. I am a 'less is more' type person and my regret is going overboard.
I have already had an appointment with a doctor of Functional Medicine and am trying to incorporate as many complementary treatments as possible. Lisa, thanks for the link to your site, your recipes look wonderful and I will definitely be trying them. We were already in the process of altering our eating habits prior to my dx, but this has encouraged us to try that much harder.
Lisa, do you mind sharing what else you do...and if anyone else has any alternative ideas, would love to hear them.
Thanks!
~Jen
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I wanted to take Tamoxifen. I was so uninformed back then I was unaware of any downside. That was a long time ago. I can't remember why I never got around to taking it--I think some doctor was concerned about phlebitis. After fifteen years, a new doctor taking my history asked me, "so you took Tamoxifen?" When I said no he just shrugged.
The only alternative I used back then was progesterone cream but I had to educate myself on the other supplements, one by one. I had an expensive integrative doc at first but I realized I was just going to him for the list of supplements. You can probably get the list on the Complementary and Alternative Forum---with some individual variations, of course.
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Dayla, the new study that came out found that antidepressants don't interfere with tamoxifen after all. You might tough base with your onc about that.
Asking if anyone has had a recurrence isn't going to give you the info you need. The best information you are going to get is the percentage of increase in chances of survival based on the characteristics of your tumor. Then you just have to decide if you want to live with that risk. There are no absolute reassurances either way, just your own personal decision based on the benefit and risk.
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Actually, it does help me. My oncologist has not given me any survival statistics, only recurrence statistics. I am more comfortable not taking Tamoxifen than risking the side effects and long-term unknowns, however still wanted to hear about whether others had recurrences or not.
I know there are no reassurances, but I'm not looking for that, just for information.
Thanks.
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I had just turned 49 and was in menopause at diagnosis. I had only a lumpectomy with biopsy track removal as treatment - no rads, no tamoxifen, no aromatse inhibitor. At the end of February, it will be 7 years since my diagnosis. No problems as yet - fingers crossed.
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I am 70 years old and was told to take Arimidex after surgery/radiation. I only lasted for six months (too much joint pain) and was then put on Aromasin. That was an even shorter duration; I quit after two weeks. Next up was Tamoxifen.......I started with one half dose for two weeks and then began the 20 mg. dose. I quickly found that 20 mg. was equally uncomfortable with side effects. I went back to 10 mg. and searched the internet for low-dose tamoxifen studies and found enough to convince me that it was not such a stupid way for me to approach compliance. I had an appointment with my onc. yesterday and showed him the internet information and he was okay with me choosing to be compliant with 10 mg. Perhaps you could research this alternative on the internet and reach a conclusion that is appropriate for you. Good luck to us all, what ever we choose to do. Barbara
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There was a thread about it in this section, I think it was titled something like news about CDYP (or whatever its called) testing from San Antonio.
Women who have had recurrences would most likely be posting in the stage IV section, not here. There is an old roll call thread in which they describe their bc history. You might try that. but honestly, I don't know what you are looking for. If you don't come up with anyone, are you going to conclude that if you skip tamoxifen, you won't get a recurrence? Does that make sense? You know its possible for this to be true. The likelihood can only be guessed at by reading the stats.
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I don't know how accurate the info is but several celebreties opted out or did not take it simply because it was not available at the time.
Julia Child had a radical mastectomy on only the cancer -breast and that was it; no chemo or tamoxifen.
Suzzane Sommers did lumpectomy and rads but refused tamoxifen and took bioidentical hormones.
My Gyn in wisconsin is a 34 year + survivor (got her cancer at 31 Years old) and is now 58. She did chemo because she was so young, bilateral mastectomy and no tamoxifen.
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I'm wrapping my head around the evidence that will help you make this decision, and it seems to me the early studies on the efficacy of Tamoxifen in early-stage patients would yield exactly the results you are looking for. Group with Tamoxifen = X% recurrence, Group without Tamoxifen = Y% recurrence. And I think, though I'm not sure, it is studies like these that are used in lifemath.
Your Oncotype, in all likelihood, will yield you better results, too. I had a 12, which means 8% recurrence rate. Not bad. But that's assuming I take Tamox. If I don't, recurrence is more like 16%. When you think about 5% or less being clinically significant, I wasn't willing to take the risk.
BUT, I hear wildly-divergent opinions on what my absolute risk is. Some doctors have told me Tamoxifen only helps me about 3%. I just wasn't able to parse through to figure which number to settle on. At 3%, I might have begged off. As a young survivor, I'm really worried about the long-term effects of these drugs.
I will also say there is no way I'll do Arimidex at my age. My onc will not be able to convince me that putting someone age 40 through that yields better overall survival for an early-stager.
Finally, I am on day 10 or so of Tamoxifen with absolutely nothing negative to report. I thank Member_Of_The_Club who provided me really great, smart steering at key moments in my decision making.
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Hi, Jen:
I take Brevail.You can read about it at brevail.com . I also avoid certain foods, like dairy, soy, and sugar. In fact I only eat those things on a holiday or special occasion.I realize that the soy thing is still debated by many...but based on what I've read in all my reserach for school, I've decided to avoid it.Soy lecithin alone (used a binder in many foods) is not a problem, however, because it has no estrogenic activity.I eat a ton of veggies, and I have at least one cruciferous veggie per day. I take milk thistle every day to detox my liver. I also take melatonin every night.
Lisa
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I am estrogen positive 90%. I took Tamox for 11 months and then went off due to side effects. I was diagnosed with mets a couple years later.I do wish I woulda stayed on it but I cant go back and change that.I'd have been much better off having took it than to get mets. Now I "have" to take Aromasin. I can no longer work etc because I have mets to my spine.I just want u to hear the downside as well as the upside. Just really think about it before u decide not to take it please. I wish u well..Mazy
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I have been on Tamoxifen for a year and a half. I'm not having any side effects. My oncotype dx score was low enough that I didn't need chemo. I did have radiation, which I understand is to prevent recurrence in the affected breast. As I understand it, the Tamoxifen helps with preventing a new primary cancer in the other breast. The chance of recurrence in the oncotype dx assumes that you are taking Tamoxifen for 5 years.
Re: antidepressants interfering with Tamoxifen, this was refuted at the latest San Antonio Conference. You can read about it here: http://blog.dslrf.org/?p=282
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In my case, Tamox gave me severe anxiety and migraines. I'd never had anxiety before. My other issue was that we have a strong family history of stroke.
It's hard to say... our breast cancers are so varied, even when labeled + or -. And an increasing # of women have recurrences while on Tamoxifen. In my other online community, I'd say it's about 50% of all the Tamox girls have had recurrence. So it's a roll of the dice, I guess...one we never asked for.
Lisa
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With my first bout with cancer 23 years ago, I took tamoxifen for 1.5 years and hated it, stopped it but my gyno put me on megace (not standard care but does block estrogen). I was on that for 10 years and then on PR cream for another 5 years. I had a reoccurance in Aug. The Oncologist at UCLA said that I reacted very well to estrogen blockers, and it was when I went off of them and my estrogen came back that my reoccurance started. So for me, I consider them a life saver. I'm on arimidex now with only mild SE--(warm flashes). I'm not worried about taking it, I worry about when I stop taking it, 5 years from now but as my onc. said--we'll probably have something new by them.
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I have been on Tamoxifen since July of 2009....I hated taking it and looked for reasons to not take it...always searching for those stats that would justify me stopping. I had lots of side effects that I thought were Tamox related...recently...I have felt more like my old self...maybe the effects of chemo and rads and the shock of diagnosis and chemo-pause have subsided...I no longer look for reasons to stop taking it...it "is what it is" - for me the benefits far outweigh the risks...so I am taking it for the duration. Personally...I know I would wonder if I have a recurrence...that I could have prolonged getting one if I stayed on it....so for me, now...taking it is what I will do...The brain fog, the mood swings, etc. etc., even the weight gain have stabilized...I think that the chemo, rads, and the sheer shock of wrapping my head around the diagnosis with little risk factors were all part of my side effects...I did not take anti-depressants or other recommended drugs, choosing instead to ride it out and see where I was at the other side of all the after effects...for me, the side effects have diminished to nil....hang in there,,,
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Thanks for all of the replies. I have yet to decided what to do. I am really just curious about those who don't take it and don't have a recurrence (or take for a short period of time). I can't explain it, but the idea of taking Tamox scares me to death, way more than the cancer coming back. I know that the bc could come back, but there seem to be so many side effects with Tamox.
I have also had liver issues in the past and do not care to revisit them. I am seeing a specialist (tomorrow) who can hopefully discern whether or not they might recur, but it is a far more scary prospect (to me) than breast cancer....more to the point, I guess I know I have to be on the lookout for cancer, there are so many issues with Tamox...and how long down the road could it affect me?
I am not saying anyone else should not take it and I am relieved when I hear about people having few/no side effects OR that things get better with time. I just don't want to trade illnesses or have to take several other medications to counter the bad effects of this one.
I really am grateful for all of the responses (including those taking it) as it helps! Hopefully, I will have an epiphany soon (no pun intended) and figure it out which is the right course for me...
Thanks!
~Jen
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What I'd love to see more of on these boards are links to studies, it would really help I think! Check out another thread on radiation and tamox--Msbehavin just did a cool post on a research study about tamox and recurrence.
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Jen, You have to do what u feel is best is for u for sure. HUgs, Mazy
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I have to say that I'm not quite understanding all the fuss about taking Tamoxifen. I'm assuming we've all done the chemo thing. Tamoxifen is a walk in the park after that and so is Arimidex. I looked at it like this, A follow up little pill that I could quit taking anytime I took a wild hair notion wasn't much of a health concern after 9 chemo treatments, a year of herceptin, 3 surgeries and 35 rad treatments. Yes I too considered the "quality of life" issues but I figured QOL with side effects would be better than QOL if I had to do another round of chemo, surgery and rads. I've been of Arimidex for 3 and a half years and it's no fun but there's not a lot I wouldn't do to increase my chances of more time. QOL only applies to the living.
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HI Jen..
since you ask... I was not given tamoxifen, or anything else. I BEGGED for it. 0.5cm invacive in one breast; no node involvment. Bilateral mastectomy.
3 years later, I am 43 with stage IV.
Not to scare you.... just the facts.
Good luck in whatever you decide to do.
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lisa34- I actually looked at your bio info to see if you lived in the United States. I am shocked that a doctor in the US (or anywhere, but in other countries it's sometimes treated differently) wasn't insisting. I'd be mad as you know what today, for all the good it would do. It sounds like you did everything you could. So sorry about your current status.
I have a friend that was about the same as your original diagnosis that had a lumpectomy and rads and is now on tamox. Did they think it wasn't necessary because you had a double max?
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Just had my first onc appt yesterday and also began Tamoxifen yesterday. I'm on day 2, so can't comment on SE's just yet. So far so good. My onc told me that should I decide to not take T for any reason, that my risk of recurrence increases by approx. 8%. That seems like a large enough # to me to persist for awhile. He asked me to persevere on it for at least 3 months as often the SE's (if there are any) often decrease or disappear after that. I sincerely hope that this works well for me, but I think that if the SE's of the T were absolutely unbearable to my every day life, then I would be prepared to live with the 8% figure I've been quoted. Every individual has to make that call for themselves - these medications will affect us all so radically differently.
I have also been on an anti-depressant for a couple of years pre-BC diagnosis, and have tried to stop it a couple of times. Each time I crash emotionally so have just decided that it's not worth trying to stay off. I'm on Wellbutrin and as the pharmacist was handing me the T yesterday, he told me that Wellbutrin is known to reduce the efficacy of T, so suggested I see my PCP and change to Effexor, if that will work for me. Apparently it is also prescribed for helping with the hot flash SE's, as well as an anti-depressant. So maybe it will kill two birds with one stone for me.
I too have researched until I'm blue in the face and in the end, (after getting myself completely tied up in knots and having anxiety attacks over trying to sort through the vast amounts of information, some contradictory) I'm probably going to go with the recommendations of my medical care team. It's easier for me to deal with questions and answers face to face with these people than to keep doing my own research and completely paralyze myself by analysis. So I'm giving the research a rest for now because I don't think I'll get what I'm really looking for, which is something or someone that will tell me, "Do such and such, and this will be the outcome". I'm in no way suggesting that others shouldn't follow that course - I just realized for myself that although I was getting informed, it wasn't necessarily helping me to make my decisions but rather was confusing me all the more. I was looking for sure answers, and wanted to be able to count on a sure outcome, and that, I now believe, is impossible. I get the sense that if our health providers, most of whom are caring and compassionate individuals (I said most!) could look in their crystal ball and give us the answers we were looking for, they would love to do it, but they can't. That was a hard pill for me to swallow. I so want there to be a "right" answer.
I guess we all just have to do what we have to do to get through this.I start rads in mid-Jan or early Feb (have yet to have my first rad onc appt). Wishing you all the best in this horrible journey we're all on and hope that in spite of all of it, we can have as Merry a Christmas as possible and enjoy time with our families and loved ones.
Bless you all,
PT
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I have read a few studies regarding the amount of Tamox possibly being the issue - we all automatically get 20 mg pills, and these studies showed that the amount was very unnecessary for most females. (protection occurred at much lower levels, with much less side effect damage).
I will try to find the studies again soon - I'm in grad school and overwhelmed with work at the moment
Lisa
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Hi,
I was diagnosed in April 2010. Stage IIa four positive nodes. Had chemo and radiation and I otook Tamoxifen for 32 days and quit. What are you doing alternatively since you didn't go the Tamoxifen route either?
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Hi hillck - So far so good on both Tammy and Effexor. I started them within days of each other, and haven't had a hot flash (at least I don't think so!) Gotten pretty warm a couple of times at night in bed, but I don't think I would call it a hot flash. I'm hoping that this absence of SE's keeps up. I'm glad the Effexor is working for your hot flashes, and shouldn't be any reason why it wouldn't keep the depression in check as well. I'm also going to a naturopath on Jan .11 so will ask him about a lot of stuff too . . . I figure we need all the help we can get so if he has any better ideas, I'm open to them.
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Here is a study on smaller doses of Tamoxifen.
http://ww2.cancer.org/docroot/NWS/content/NWS_1_1x_Tamoxifen_Dosage_Studied.asp
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Hi, Mango1:
I take Brevail instead, plus I really watch my diet to avoid hormones/sugar.
Lisa
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