Anyone Regret Not Taking Tamoxifen
I am so on the brink of stopping tamoxifen after 6 months of taking it. The only reason I continue to take it is for my family (my husband and 3 teenagers). The side effects have not improved, but instead I have a few additional ones. I just feel like my quality of life really is not where I need it/want it to be. Plus, with all three of my children in high school I feel like I only have a few years left with them at home and I don't want those few years to be miserable ones (for them and me). So, with all that said, is there anyone with a similar diagnosis (IDC, stage 1, grade 3, 1.4cm, er+/pr+, her2+) that did not take tamoxifen and has had a recurrence or mets, therefore regretting not taking the tamoxifen?
Comments
-
Mbf, I'm not taking Tamoxifen, but several women on this board, who originally were diagnosed early stage and then got mets, have stated that they stopped Tamox early. There's no way to know if they would have progressed anyway, but I, personally, would not risk it. I know that QOL is important and I'm not having serious SEs on Aromasin, so this is all very easy for me to say. It is your decision and I wish you the best!
0 -
mbf - so what exactly are your SEs? I am taking it now. My ONC started me on Arimidex because the type of BC I have - IDC Stage 2, Grade l. The problem was Arimidex attacks the bones and I already have osteoporsis so she switched me over to Tamoxifen. I havent had major issues with either one of them. Tamoxifen does cause hot flashes and I think a bit of weight gain although drs discount that. Of course they arent the ones taking it but thats another story. My sister in law was on it - she just reached her 5 year mark. Some drs are recommending 10 instead of 5 years now to be on the safe side. No one wants to take it but frankly I am afraid not to. What does your ONC say? BTW I have a friend who had a double mx and had issues with both drugs. One out of a zillion get blood clots from tamoxifen - she did. She also struggled with Arimidex so she just decided to take neither. She just made it to 5 years. Diane
0 -
I was speaking to a volunteer in the waiting room for radiation yesterday and she had some bad side effects from the tamoxifen. She told our surgeon that she was going to stop and he said that was fine if she wanted breast cancer again. It was a bit of a facetious response, but she decided to continue. That being said, many people stop and are fine and many people continue and have a recurrence. Apparently, the adherence rates are shockingly low. I have read that only about 45% of women actually take it for the full five years. Speak to your doctor and they can tell you what your risk would be stopping.
0 -
Yorkiemom - Thanks for your response. I was not able to find anything about anyone that was stage 1 then had a recurrence or mets. So thank you for letting me know that they do exist (though I'm sorry for them that they went from early stage to mets). It does make me think more about whether or not I should stop.
Edwards750 - I've talked with my onc about my side effects and she will not give me any other options other than continuing the tamoxifen. I have several hot flashes all day and night, often feel very fatigued, my weight will not budge (though my diet is good and I try to walk every day - I do know I need to add more weight training to my exercise), my emotions are all over the place, my bones and joints ache (that just started over the last 6-8 wks) and it looks like I'm getting arthritis in a couple fingers, I get leg and foot cramps, my memory and mind is very foggy, my eyes feel like I've been swimming in chlorinated water all day... I realize it's tough to know whether it's lingering chemo se's, herceptin, or tamoxifen. But rather than feeling better since I'm further out from my last chemo, I'm feeling worse in some ways.
rc1 - I did ask my onc what my risk would be if I stopped the tamoxifen and she said she could not tell me because there's not enough data on it given that I'm her2+ also. I have tried several times to ask in a variety of ways and she won't budge - whe will not give me any numbers.
Thanks so much for your responses!
0 -
mbf - can you get a second opinion? Obviously your onc feels strongly that you should stay on tamox, but she does seem to be leaving you on your own to deal with the s/e rather than working with you as a partner to get the best QOL you can have while on tamox. Maybe another onc might be more willing to work with you instead of just issuing pronouncements. I left my original onc after active treatment for issues like that - his attitude was the cancer is gone so what are you complaining about?
My current onc is so different - she really understands the impact of the s/e on QOL and has really worked with me to help alleviate them (I'm on an AI, but it's the same idea.) Of course, it helps that my onc is a b/c survivor, and did her 5 years of tamox, complete with s/e, herself. She gets what it's like to be on these drugs.
One thing my onc has done for me is when the s/e get intolerable, we negotiate a "vacation" where I don't take my AI for a month. I'm finishing up my 5 years this June, and in that time I've had 3 one-month "vacations". With each vacation, the s/e began lessening within a week, and by the end of the month I was pretty symptom free. The good part was that when I started up again, it took a few months for the s/e to build back up, so I ended up getting 4-5 months of relief out of my one-month vacations. Maybe that's something you could discuss with your onc. Obviously the best thing is to stay on it uninterrupted for the full 5 years, but rather than go off of it completely, it might be better to take a break every year or 18 months with the result that you're able to stay on it for 5 years.
If I hadn't had those vacations, I don't think I ever would have lasted my 5 years.
0 -
mbf- I was going to quit taking Tamoxifen because my side effects were similar to yours. Hot flashes 15-20x per day, night sweats and chills, insomnia and fatigue, leg and foot cramps, foggy mind and dry eyes. I'm an athlete. I've never had a problem losing weight when I wanted to. I lost 12 lbs in the 2 months before I started Tamoxifen. I've had no weight change since despite WW and taking a hardcore boot camp class 3x/week. I started with it on 3/6/12. The first 4-5 months were brutal. A friend of mine talked me into trying acupuncture and my MO recommended it before trying an anti-depressant. I started 10/25/12. Over a course of time and treatments, a bunch of the side effects have greatly lessened, to the point of being almost non-existent. I think it may have been a combo of the acupuncture and some settling down body-chemistry wise, but it did help a lot. SE's are not all gone, but we're now working on the ones that remain. At least I can function now. Maybe something alternative would work for you? I was skeptical but works for me.
0 -
Mbf- try (if you haven't already) taking Tamoxifin from a different manufacturer. I have had the best luck with Mylan brand. The Teva (?sp) was the worst for me with joint pain and nausea and hot flashes. The different brands use different fillers and stabilizers that result in different SE.
0 -
mbf: of course people go from stage 1 to stage 4! Please read and talk more. Here's an excerpt, with a footnote to go to the original source study, and the link it is from:
Confirming these findings, a recent study showed that even for small tumors in the lowest risk category, the 10-year risk of breast cancer recurrence was as high as 12% in the absence of adjuvant therapy. Additionally in the absence of adjuvant therapy, even in the lowest risk category, the 10-year risk of breast cancer-related death is high, at 7%. 14 14 Chia S, Speers CH, Bryce CJ, Hayes MM, Olivotto IA. Ten-year outcomes in a population-based cohort of node-negative, lymphatic and vascular invasion-negative early breast cancers without adjuvant systemic therapies. J Clin Oncol. 2004;22:1630-1637.
0 -
Natsfan - I'm glad your second onc was more understanding and helpful. I like the idea of the one month "vacation." I had thought of taking a month off to see what happens, but I typically will not do anything without dr's approval, so we'll see. Congratulations on making it almost 5 years! I'm sure you're looking forward to June
blanviper - That's great that the acupuncture helped so much and that your onc has been on board with it, and with trying to take care of your remaining se's. I never considered alternative medicine (guess I never had to until now!), but will certainly look into it.
momof3boys - I had read that about the fillers a couple months ago, but had forgotten about it. Thanks for the reminder!
jessica749 - Thank you for the link to the study. I had read that and I think it's one of the reasons I am reluctant to call it quits with the tamoxifen. I think part of the reason I posted my question was to get a personal response. I read the studies and it's always numbers, but then when I've searched on here I don't really see anything that shows me someone in my situation with my treatment having a recurrence (which is great - I don't want that for anyone!). I do want to make sure I understood the study correctly - when they talk about the absence of adjuvant therapy, doesn't that mean no chemo or radiation as well? I had chemo and radiation, so I'm thinking that makes the numbers better for me?
Thank you everyone for your responses. I really appreciate the feedback!
0 -
mbf: It's a tough decision. If I stop taking Tami early and don't recur, I'm going to be really happy. But if I stop taking it and I do recur, I'm going to be angry that I didn't do more. I had this argument with myself for weeks, crying frequently because I just wanted NOT to have to make this decision.
I started Tami two days after finishing chemo, and 2 months later I wanted to die - incredible pain, hot flashes, emotional swings, all of it. I took a 1-month holiday and then started on Aromasin. SEs didn't get better, in fact got worse. My MO says SEs are often more pronounced on Aromasin. I took another month-long holiday and started Tami again - and surprisingly, my SEs are almost gone. I have also been taking Effexor, which can help with the hot flashes.
I'm curious - did you have the Oncotype test? If so, what was your result? I see you're Grade 3, which makes me ask. Even with Grade 2 and a small tumor my Onco score was 42, a recurrence rate of 28% including Tami, so it was really pushed hard as part of my treatment plan.
Over the last several months I've realized that my life will never be the same again. I will likely always have some kind of pain - from the surgery, the medication, the treatment - and fatigue. It's the way my life is now. I don't like it, but it is what it is. I argued with my MO about taking Tami - I have a small tumor, I'm almost really triple negative, I don't *need* this stupid medication - and he snarkily told me I could continue to believe what I believed, or I could save my life. I hate him. I know now that he's right. It's still my decision, but he's right.
I don't want to look back and think "I wish..." I'd rather look forward and think, "I will..." I will make it through the next four years. I will be around for my grandkids. I will survive this stupid medication, just like I have made it thus far. I will.
Good luck!
0 -
Hi NancyHB - I'm sorry that you're as torn as I am. I know it's an awful feeling but you seem to be accepting it. I didn't have the Oncotype test done because I was told there was no need to do it because I was Her2+. They said that sealed the deal for needing chemo and herceptin, so there was no need to do it. So my understanding is that the test tells us how likely it is that our cancer will come back and guides the dr's in deciding the best course of treatment - right. So, since I would need herceptin, which works best when given with chemo, there would be no need to decide whether or not to do chemo.
I wish you all the best and hope your SE's continue to diminish!
0 -
Kayb - I'm sorry you had so many problems with the hormonals. I can only imagine. My hot flashes have become very frequent but not tsunami-like as you described (thank goodness). My er/pr scores were 6 out of 8. I wasn't given a percentage score like many others on this board. But my onc translates my score to "highly estrogen sensitive" so that makes it sound like the tamoxifen is more necessary in my treatment. I'm 46 now and was showing no signs of menopause before the chemo kicked me into it in July. My onc says that part of the reason I'm having such a difficult time is because I'm dealing with cancer and menopause at the same time.
It's interesting that you were feeling the fatigue at the end of herceptin. Maybe that's contributing to it all. I have 4 more herceptin infusions left so maybe things will get better.
I will try to up my exercise and see what happens. Hope you continue to feel good!0 -
jessica749 - Thanks for that great link on risk of recurrence. It explains things as I understood them but in a way that is easy-to-understand. I think I'll share it with my sisters and some close friends as I don't feel I've been able to express my concerns about recurrence to them very well. This helped me.
mbf - Good wishes to you as you make this difficult decision. You've gotten some wonderful food-for-thought as you move ahead. For me, the hot flashes when I started on Tamoxifen were very unbearable. I think they've lessened some but, at least at night, now I just sleep through them for the most part. Once I could sleep again, everything seemed better. I go through phases where I think the Tamoxifen makes me need a lot of sleep. For the most part, I just go to bed earlier (and am late to work!) and it seems to pass or I seem to "catch-up" on my sleep.
0 -
Thanks Golden01. I'm glad your hot flashes are improving. I will say that mine arent's as bad at night as they were in the beginning. They still cause me to wake up, but I'm not sweating through the sheets. But they have become much worse during the day lately. Strange... I'm a little afraid of what the summer and warmer weather might bring, but I try not to think too far ahead!
0 -
I sweat through my pajamas and the sheets but just don't wake up anymore! We just keep the thermostat set low in the summer (below 70, I live in Phoenix) and figure the electric bills are a small price to pay if it keeps my cancer at bay. Actually, we keep the thermostat set low all year round!
Thinking of you as you make your decisions.
0 -
Want to highlight NancyHB's mention of Effexor above. Perhaps a low dose would take the edge off (may not provide total relief). Sometimes clonidine can help, especially if you have hypertension - it's like two for the price of one. I would also endorse the drug holiday idea as worth a try.
I've managed to endure the "warm flushes" after 18 months of tami, but need to think about transition to an AI at some point...
0 -
mbf -
Like you, I have taken a number of vacations off Femara during the last 5 years. In the first 6 months of taking Femara, I thought "This is OK, I can do this" as the side affects were tolerable. However as each year went by, new problems kept coming up, lots of back pain, hip pain, shoulder pain, which I continue experience without any resolutation. However when I developed vertigo which lasted 9 months in total, I really struggled to continue taking Femara, especially with all of the other side affects in combineation.
At that point my Onc suggested a vacation from Femara. I went off Femara for 6 weeks and at the end of that I was starting to feel like the vertigo was lifting. I went back on the Femara however all the symptoms came back within 4 weeks. I then went off the Femara for another 10 weeks and I continued to feel better, but got scared and went back on the Femara. It gave my body a chance to break the Femara cycle, and although I do still suffer from time to time with bouts of vertigo, it is now manageable. I think my body was telling me it was over the Femara.
I have reached my 5 years on Femara however the ONc has suggested I continue for the time being, particularly as here in Australia when I was diagnosed in 2007 we did not have access to Oncytype testing, plus I did not have chemo and did have a positive node, so I am running a bit scared to not go off Femara for the time being.
Even though Femara has not been terribly enjoyable, I think the first 6 months when I had my ovaries out, plus was taking the Femara was sheer hell. I was a total shakey, sweaty mess 24/7, now it is worst about an hour after I take the Femara tablet, and also at night when I lay down. I have found leaving the fan on all night does help. Saying all that, I think we are lucky that we do have these drugs available to give us a chance for a longer life, for that we have to be thankful.
Ched
0 -
When I was diagnosed in 2006, age 45, IDC, stage 1/grade 1, onco score of 13, I tried tamoxifen a few weeks, but had horrible SE and stopped. I was diagnosed again in 2010, stage 1/grade 2, new primary, and have been on tamoxifen since. It took a while, but I basically feel fine on it.
0 -
I am not sure is my situation counts here. Ten years ago I had been diagnosed with bc, as listed below, and had the usual tx: Lumpectomy, snb, rads. I did not take the Tamoxifen I was prescribed, as it seemed unlikely to be useful. I knew the tumor grade was a 1, and was likely to not recurr or metastasize anyways. I have no regrets, and very much enjoyed the freedom from side effects or daily reminders of having had cancer. This year, I have been diagnosed with another tumor, opposite breast. Not a recurrence. Somewhat different profile, grade 2, er +, pr-, and responded well to lumpectomy. I am about to start radiation again, about which I have doubts, and I am questioning again, the need to take the Arimidex that I was prescribed. Low Oncotype score only served to reinforce my resistance to adjuvant meds.
I was 52 when the first tumor was identified, and am now 62. I tried to make a case for skipping rads due to my advanced age, but the docs were not buying it. I know they need to stand firm about the standards of care, or risk malpractice suits, so its hard to know what they really think. I am more motivated to eat well and keep weight down, as that does correlate with reduced risk for recurrence. Wishing you all the best in figuring out a course of action that fits well for you.0 -
mbf - I debated posting here, because my situation is not the same as yours. But in deciding my course of treatment, I went through some of the same questions you are facing.
My multifocal IDC was tiny: 1.5mm and 0.5mm (Stage 1a, Grade 2). I also had two areas of DCIS. All margins were clear after BMX, there was no lymph node involvement, and I was Her2-... so no chemo, no rads.
After surgery, my risk of recurrence was 1% - 2%.
I was 100% ER+, but I was still surprised when my MO insisted on me taking an AI for five years.
I argued against that on many levels, not the least of which was QOL. I quoted CancerMath stats that said my life expectancy would be 8 months longer if I took an AI. Big deal!
With regard to QOL, she said she respected my position, and agreed. If I had too many SEs that affected my daily living, we would try alternate drugs or stop altogether.
As for the CancerMath stats, she said "Yes, but would you rather live WITH mets or WITHOUT them? It does happen to women with your diagnosis, and it's my job to prevent that from happening."
SO.....I made the decision to take the AI. Yes, I have some SEs, but nothing that I can't live with. If I do get a recurrence in the future, at least I'll know that I followed my MOs advice and gave it a shot. With the drug, my tiny risk is further reduced by 50%.
0 -
mbf - a friend who is a nurse at St. Jude Hospital had bc and was put on Arimidex initially. She could not tolerate the SEs - they were brutal so the ONC switched her to Tamoxifen. As you probably already know it can cause blood clots and although rare it does happen - it happened to her and she told her dr that was it - she was done. There are other drugs of course but she refused to take anymore. To be fair she has had a lot of medical issues. She had a double mx - her choice - the drs thought she didnt need to do that since only one breast was affected but she said it was her choice and of course it was and is. Tamoxifen has caused me more discomfort than Arimidex did but Arimidex robs the bones and with my having osteoporisis I could not afford to put myself at a greater risk for fractures. I did take additional drugs to combat the bone loss issues but the drugs they prescribed cost a lot and I frankly was tired of taking a3 drugs a day just for that. Again I am afraid NOT to take tamoxifen even though I do have a low grade tumor and a low oncotype score but I am not you and I am not experiencing what you are are with side effects. You should do what you think is best for you. Lots of good advice/suggestions here but the decision is yours - just be sure when you decide you dont second guess yourself or look back. Good luck...diane
0 -
vlnrph - I've considered asking for the effexor, but I have a reluctance to take any anti-depressant because of having a tough time a few years ago with ones I was taking to help with anxiety. We'll see... I haven't completely ruled it out.
aussieched - I'm so sorry for all the difficulties you've had with femara. I give you lots of credit for sticking with it and getting through it all! You are right - we are lucky to have these drugs and I realize that - I just want my longer life to have a decent quality. Maybe I shouldn't be so picky
zoey1 and MamaMe - I'm so sorry you both have to deal with bc twice. My heart goes out to you both. Do they think that the new primary could have been prevented by tamoxifen? Or since it's a new primary it's just a whole separate thing and not related to any previous treatments? Good luck to you both. My thoughts are with you.
Blessings20 - Thank you for responding. I've never seen such a low recurrence risk - that's great!
Edwards750 - Thanks for your response. That's the hard part - making a final decision that I won't second guess and just moving forward from there. Ugh! Good luck as you continue with your tamoxifen - I hope any se's you are having diminish quickly
robo47 - Thank you - that's another idea to consider. I tend to be the 'all or nothing' type though, so we'll see
0 -
Hi ladies,
This is my first post in this forum.
First of all, Jessica749, thanks for posting the article. It was informative, helps me to stay on Tamoxifen.
Mbf and others, I began taking Tamoxifen on Valentine's Day, 2013
. The SEs have been as follows: slight headache, constantly feeling warm (but no severe hot flashes), sore hip, shoulder and finger joints, feeling sad, cranky, just not my usual upbeat self. I resent having to take this drug, YET I know that given the data associated with my diagnosis, I would be a fool not to do so. My cells tested 100% positive for ER+, PR+, and the presence of the Her2+ protein molecule, there was no LN involvment but there was LVI. I am Grade 3, Stage IIa. My MO and RO explained to me that given my info., the hormonal part of the treatment plan is critically important. Already I have skipped a few days, days when I simply felt really, really crappy, and I am okay with doing so if it enables me to take this drug for a long time. I like the idea of a one-month vacation from it and will probably do that once a year. I think we all feel the same: "Really, after surgery, mastectomies for some, chemo, radiation, weight loss, weight gain, loss of hair, slow to no hair regrowth, etc., to have to now accept that this is our "new normal," well, it totally STINKS". . . but to not have access to this drug, for some of us, would be even more stressful. Let's just support one another, lift one another up on days when we may be down and simply soldier forward, doing the best we can. For those whose SEs are hideous, of course, that last sentence does not apply to you
. Lastly, thanks for the tip about trying a different manufacturer. Fillers may be the cause of trouble for some of us. 0 -
Hi gratitude - you're right - it totally stinks! But you're also right that to not have access to this drug could be more stressful. You've got a great attitude and I know this is the perfect place to find support and lift one another up. Thanks for being a positive example! You are all really making me think about every piece of my decision. I hope your se's diminish quickly
0 -
Mbf,
Thanks so much for your kind words. Glad you are really thinking about your decision. Even if I end up taking it 5 days a week, taking two off, I think that is better than not taking it at all. Now, I am quite certain that my MO and RO would NOT be happy if I go that route, but if, after 8 weeks, I still feel sore, out of sorts, that may be my plan. Each of us has to try to live and enjoy each day, and most of us, I assume, also have others living in our homes with us, and we have to try to ensure that their QOL is also decent, esp., as DH has been such a great source of strength for me.
0 -
gratitude: You make very valid points - thank you for sharing your current struggles. You're right - this is our "new normal" (I f*****g hate that phrase, excuse me, I just hate it that much) and it stinks, but it is what it is. Most days I'm just really, really glad to be alive, and try to remind myself that pain means I'm still here and moving! :-)
mbf: I have taken Effexor to counteract the SEs of Tami. I started with 37.5 mg - lowest dose possible - and after a couple of months I started to notice my hot flashes were really reduced. Then I broke down in my MOs office and realized I was battling some post-treatment depression, and increased my dose to 75 mg. That was three months ago. I loved Effexor. I would marry it if I could. It not only took away most of the Tami SEs, but also diminished my depression and anxiety to a level where I started to feel "normal" again (not that "new normal" shit either). I felt good. Effexor is both an anti-depressant and anti-anxiety med, and so it hit me in both areas of difficulty. My MO thought that part of my pain could be related to depression; much of it went away while on Effexor. I don't know if it was because of the meds, or because the last of the chemo finally left my body, I don't know. This last week I started to reduce my Effexor intake (*never* stop this stuff cold-turkey, you really have to wean off of it) and am back down to 37.5, and feeling really good in general. A little help goes a long way; better living through pharmaceuticals, I always say.
I take my Tami faithfully every day, saying a little blessing to each pill before I pop it into my mouth. I keep reminding myself that I'm one day closer to 5 years, and being done.
Stupid cancer.
0 -
Mbf, I haven't started tamoxifen but will once rads are finished. I second the suggestion to see if acupuncture might help ease the symptoms. I never had chemo, but a work colleague of mine is going through it now. She said her worse chemo se's happened during the round for which she skipped acupuncture. I know it's not a scientific sample, but I don't think there's any harm. Maybe your mo or bc center might be able to recommend a practitioner?
Hope you feel better soon!0 -
gratitude - you mention the QOL of those we live with too... that's also what I'm considering in my whole decision. I know how everything is affecting me and I try to be patient with myself and deal with it, but those time when I just can't cope I know it's affecting how I am with my family (whether it be just very quiet and withdrawn, or the opposite - crazed, edgey, and overwhelmed).
NancyHB - thanks for the info on effexor. One of my worries is exactly that - the weaning process when it's time to go off the effexor. I was on paxil for several years and it took me a year to wean off of it and it was not an easy or fun year. I vowed at that point to never take anything like that again. So we'll see if maybe I go back on that vow.
Gemini4 - I notice you're in Massachusetts - is your friend that used acupuncture from MA as well? If so would you be able to let me know who she used. I live in western MA, so am wondering if it's someone around this are.
Hope everyone is having a great day!
0 -
I can tell you one person who announced here that she wished she had taken tamoxifen
RobinWendy was diagnosed stage 2 in 2001 - refused tamox - in 2004 was diagnosed with mets. One of the treatments that was most effective for her was tamoxifen.
She came into this forum and said several times that she wished she had taken tamox in the beginning, but she was concerned about the clotting issues...
She's been gone for a couple of years now
0 -
Mbf,
I am sure that you, like I, have had some humourous family moments when we begin acting like the Incredible Hulk, transforming from a calm, loving person to an erratic, unpredictable, cranky, crazy person
; however, I know we all think about our loved ones, in addition to ourselves, as each of our bodies tries to adjust to all the chemical assaults it has undergone, not to mention the surgery aspect, too, and radiation to boot, for some of us. ICanDoThis, your post puts the fear of God in me, and that is not a bad thing in any way. So sad to read, yet a stark reminder to all of us that the Tamoxifen portion of the treatment, for some of us with a certain diagnosis esp.,, is so critically important. "I love my Tamoxifen, I love my Tamoxifen, . . .
" If I say that enough, I am quite sure I will begin to believe it. 0
