10 years of Tamoxifen for low-grade cancer? Opinions.
Hi everyone--hoping you are all doing as well as possible today. I have a Tamoxifen question:
i am two years out from my cancer, low grade, .6cm invasive ER/PR+. I've been on Tamoxifen for just over a year and a half, and while the side effects aren't intolerable, they're many and not great. I have a lot of hair loss, weight gain, hot flashes, and it's totally screwing up my thyroid, which was already screwed up but now seems to change every few months, resulting in constant monitoring, changing of meds, etc.
My oncologist, whom I don't care for, just rattles off "the recommendation now is ten years" when I see her. But had a check up with my surgeon (different hospital--long story) last week and she said she really felt that no one would push me to do ten years of Tamoxifen considering the cancer I had, especially with the side effects, which have worsened the longer i take it. The only reason to consider it, she said, is my age at diagnosis (42), but even then it seemed like a lot as the increased benefit of the ten years over five years isn't very high to begin with.
I am curious what other people's docs have said about this? I am afraid to give up Tamoxifen, but I don't like taking it either and even knowing 5 years would be sufficient would help me.
Thanks!
Comments
-
My tumors were grade 1, node negative, low oncotype, and I was 45 at diagnosis. My oncologist mentioned that 10 years was now being recommended but that he wasn't going to worry about that, just try for 5 years. I took tamoxifen for 6 weeks and have had severe side effects, so my oncologist's PA (the oncologist is on vacation for a month) suggested I go off of it for a week or two, then try every other day and see if the SEs come back. If they do I'm going to quit the tamoxifen altogether and the PA said she understands my reasoning.
I'm not sure what your diagnosis was, but for me it's all about risk vs reward. If I had grade 2 or 3, or if I had positive nodes, or if my oncotype came up mid-range to high I would take it and hope that the SEs went down. I still hope the SEs go down once I try again. I'd rather not risk it if I could help it. However, with my diagnosis I wouldn't take it for 10 years while having SEs, I just wouldn't.
-
My tumor was grade 2 and I even had one node with a micromet, but when I asked my MO about the 10-year plan, she said she considers me low risk and is not sure if she will recommend me taking tamoxifen after 5 years. I am tolerating it quite well, but she is concerned about my bone density. When I started tamoxifen (at age 41) I was already osteopenic in my hips. My grandmother broke her hip and my mother has low bone density, so I am also concerned. When that research came out I assumed that I would be on it for 10 years, but I trust my MO's judgment and appreciate that she is thinking about side effects and does not have the "one size fits all" mentality.
-
Thanks so much for these replies. Yes, I feel my oncologist has the "one size fits all" approach and it's very frustrating. I know I was very lucky with my diagnosis, so it's not like I want to create drama, but I also don't appreciate feeling like she's not paying any attention and I certainly don't want to overtreat. My surgeon said just try to go for five years, and also commented that who knows--in another year from now they may know even more and recs might change again.
Would love to hear from anyone else on this issue if you feel like posting.
-
Hi Kika,
My cancer was grade 2 but node negative and my BS recommended 10 years but my Onc said something very similar to your surgeon.... start with 5 and see what is on the horizon.....I think there may be something else coming shortly as I have heard lots of references and suggestive comments along those lines, but perhaps I am reading in too much. My nurse navigator told me they are having really good success with the cancer vaccines in respect to breast cancer but I don't know any inside info and that is all I have really heard, I guess I should research....
I am faring well with the Tamoxifen so far but I know that can be subject to change. I have never taken medication until this whole debacle - I did take an antibiotic in 1987
and I really battled with taking something/anything like this. I think we are under power of fear, at least that is true for me......I did have a pelvic ultrasound despite being told I don't need it.....I think I did. I told myself if when I go again next year there is a 'thickening', I will stop taking it, but who knows how I'll feel then. It gets me through the thought process today.....mostly. But the psychology of taking it really is tough to get over.For what it is worth I started taking 10 mg (under my own guidance I may add) for 1 week. Now I take the full dose with my breakfast smoothie in the morning: it is Teva brand - my onc did tell me that different brands have different binders and it can be those that affect you more than the Tamoxifen - nice eh??. I have also heard of people having good luck with the liquid version soltamox. Perhaps that is because it is the 'named brand' not the generic so the binders are different? Many don't know about it as it is a lot more expensive than the pills but if you can't take pills, they are supposed to cover it - under my plan it is $50 for 3 months as opposed to $10 for the Teva pills, I checked on it so as I could have my ducks in a row if I need a change. There is no generic liquid version so if you were to get a script for that, that is what you would get.... I wonder if you could take a Tamoxifen holiday and switch to the liquid and lessen those SE's and make it a better experience?
I am also reading "The Complete Natural Medicine Guide to Breast Cancer" by Dr. Sat Kaur. Some of it I take with a pinch of salt, but it has a section for supplements to take with Tamoxifen and I have also heard that Biotin helps with the hair droppage/loss.
So that is my hodge-podge of information, hearsay and general thoughts.
Good Luck! Keep us posted on what you decide to do.....I for one am very curious.
-
I was a couple of years older than you at diagnosis, and have been on Tamox for just over 18 months. Grade 1, but lots of it, and a tiny bit of grade 2 found when I had mastectomies.
My MO has mentioned 10 years, but we haven't had a long conversation yet. There may be something else to consider in a few years.
I don't think I will go off Tamox, unless there is something better or a medical reason to. My family history is full of cancer and having multi-focal disease inreases recurrence risk. I have added biotin (my hair was thinning, but has stopped) and I am on a low does of Effexor for hot flashes and low mood. I also had uterine thickening, but had imaging and a biopsy and all came back ok. When I write it down, all of that seems like a lot, but right now (crossing my fingers that I'm mot jinxing myself), I'm doing great.
-
Everyone has to decide what they're comfortable with, I felt I needed to try Tamoxifen with an open mind, after all only 30% of women experience side effects (lol) my BS mentioned 10 years as well but I figured if I could get to five I'd worry about it then. So since December I've done my best to manage the side effects but now my side effect have side effects! I'll go ahead and list them, vaginal discharge, hot flashes/night sweats (interrupts sleep), irregual bleeding (which had my iron low), a weird hormonal pimply rash on my torso, fatigue, eye floaters (no vision problems before Tamox & I'm only 29) mood swings (worst longest case of pms ever) and for the past two months I've been dealing with nausea, dizziness and headaches almost daily, as in I can't stand upright unless I take another pill to ease the nausea and they all cause side effects as well. The se's that worry me are eye floaters and irregular bleeding, the se's that have become unbearable are fatigue, nausea/ dizziness/ headaches. Managing side effects has taken over my day, instead of being able to focus on being healthy and active I am constantly sick and tired and stressed about being sick and tired. That doesn't help me fight a recurrence either. It's like my body is sending a clear message that something's not right. I am 4 days out on my self aproved six week vacation from Tamox. I need break, a chance for my body to feel okay again, especially because I have minor surgery scheduled in about three weeks and I can't imagine going into and recovering from it while dealing with all the se's. That was long winded sorry... anyway I found an article on opposingviews.com titled "tamoxifen: what difference does it really make?" I highly recommend checking it out, it's not out in the far left field or anything just making things a little clearer. The study that came to the conclusion Tamox decreased recurrence rate by 44.2% had an actual 2.97% difference in women who did and did not take Tamox and had a recurrence years 0-4. I understand the math is not incorrect it's a matter of wording but less than 3% was the difference. Not substantial enough to spend my days in misery for... years 5-9 had less than a 1% actual difference. I say research and make a decision you feel is right. If I choose to quit Tamoxifen and have a recurrence or secondary I can honestly say I would not feel guilty for having quit it. Breast Cancer is a scary, horrible thing and we should be able to deal with it as we see fit, it's our bodies and our lives after all. Thank you to anyone who stuck out my rant to the end
-
my MO said she would recommend tamoxifen for me for 10 years, but only because I had a lymph node involved. Had I been node negative she would have recommended 5 years.
Nancy
-
lefty - so sorry to hear you have so many side effects I hope you get a much deserved break from them over the next few weeks. If you decide you want to try it again, I'm wondering if another brand might have less impact. I haven't tried that, but have read on these boards that some find that some brands impact them differently because the drug companies use different fillers in their manufacturing process. I've had a few breaks for surgery and after one last year, I decided to split my dose, so I take half in the morning and half at night. That seems to have helped me a bit.
-
I am new to this whole process. Currently in radiation now, then chemo. I had a small tumor, Oncotype 23 but ER just 25%. My MO is so-so on the chemo but if I am going to put up with these SE's for 25% , I certainly want chemo for 75%. I will give tamox or AI a shot but will not hesitate to give up if things get bad as described above. I guess if it was a strong ER, I might feel differently.
-
Again, thanks to all who are posting. It seems there is (as with everything in breast cancer) no clear cut opinion on this. I didn't say in my original post, but my oncotype was 5, and when I look at cancer math with/without tamoxifen, it gives me an extra 8 months of life. So...really not sure about taking it at this point but I'm not going to quit yet. I did also have another oncologist somewhere along the line tell me that they don't use it for patients with .5cm and under cancers, and mine was .6 (the invasive part), so really we were talking about the difference of a millimeter. I think if I was doing fine on it I'd be okay--and Lefty, so sorry to hear of your awful side effects. In your case I would definitely try other options or quit. I just wonder if it's not overtreatment. But of course there's no way to know, and I'm not sure how I'd feel if I quit and had a recurrence or new cancer. Work in progress, like everything!
I am happy to keep this thread going for others to discuss. This seems to be a topic many are dealing with.
-
Ridley- Thank you, I've considered splitting my dose if I choose to continue, glad it's helped you a bit.
PatRN10- Sorry you're in this BC boat with us. I am only 18% ER+ but the MO I saw was very clear that the % didn't matter in regard to Tamoxifen working. It makes decisions so much more difficult when doctors have differing opinions on the same subject.
kika2013- Wow, a mm difference just like me. My tumor was 2.1 cm, just one mm pushed me from stage 1a to 2a. The nurse at my BS really emphasize the small difference. I (and my mother who was with me) felt strongly she was trying to lead me away from overtreatment due to many conversations we had about my diagnosis and path report, plus she told (warned) me that because of my age the BS and MO would recommend chemo no matter my er/pr status. She was right. The MO didn't want the OncDx to determine "if" I should have chemo but how aggressive it should be. It's important to listen to people on the sidelines, I don't think doctors are very worried about overtreatment, it's by the books for them.
-
Hi lefty, I know they want us on it no matter the % of ER but when I asked the nurse on the Johns Hopkins "ask the expert" site, she said it does matter and although there is some benefit, they really like to see ER pos of at least 30 % . She seemed to think it mattered.
-
PatRN10- That just makes me feel better about this Tamox vacation, thanks
-
On my annual oncology visit my mo said good news is you can come off the Tamoxifen in January which will be 5 years. I reminded him that he had changed his recommendation to 10 years when we last spoke of it and he said that's right because you were node positive. So I have 5 more years. I would take it forever if it would reduce my risk! He doesn't want to switch me to an AI because of the bone issues.
-
Hi kika,
I was dx'ed at age 49 and pre-menopausal, so my MO said I need to stay on tamoxifen for at least 5 years, and wants me to go 10 years "if I can tolerate it".
I am 7 months into the tamoxifen treatment and like you, my SEs aren't unbearable but they sure aren't pleasant: fatigue, hot flashes, sleep interruption, and some hair thinning are the every day ones. When I'm under stress at work, I can add headaches, nausea, brain fog, and general inability to "cope". I have been making significant lifestyle changes (e.g., reduced work schedule, organic diet, etc.) and doing acupuncture treatments to try and improve my ability to tolerate the tamoxifen.
I don't want to give up before the initial 5 years, but since my cancer was low-grade too, I have to wonder if the tradeoff with all these SEs is worth it.
-
My onc said it would be up to me but that there is a risk of late recurrence for my profile type. At five years I think I'll take a several month break and see if I feel much different.if not I'll consider continuing.
-
6 months ago my MO told me the benefit of continuing Tamoxifen past 5years would be small. He held up his thumb & pointer finger to show me. This week in our conversation, he mentioned that I might want to stop at 5years. I really can't stay on Tamoxifen because of the GYN problems. I'd need a hysterectomy. I will most likely be menopausal at the 5year mark & could switch to an AI. But those aren't without SEs. I'm 15months away from 5years. Perhaps there is something on the horizon. Can't say for sure, but will probably call it quits at 5years. I'm not one to worry, more likely to ignore........
-
Ladies...I have reached my 5 year mark and am hoping to get off Tamoxifen for good. I am interested to hear from women who have been taken off Tamoxifen. Did the SE go away? Did the weight gain go down? Did you feel better? Did your Oncologist suggest 10 years? If you got off Tamoxifen, was it cold turkey or gradual decrease?
IDC, Right. Stage 1, ER+/PR- at age 49. Bilateral Mastectomy with reconstruction. Right Sentinel removed. No left involvement. Chemo 4 rounds Taxol and Cytoxin. No rad.
-
I was also told 10 years of Tamoxifen for a grade 1 tumor. I am premenopausal -- and was 46 at time of diagnosis. The problem with grade 1 tumors is that there is a risk of late recurrence - thus the 10 years for long-term protection. Also, I think age and menopausal status factor into the 10 year recommendation as well. . . I haven't started taking Tamoxifen yet (still in radiation). I am so NOT looking forward to this. I take zero medication now and the few times I had to take meds, I usually had some kind of side effect. . . I had one positive lymph node (macromet 8mm), but an Oncotype of 12 so I declined chemo - I am really going to have to give Tamoxifen a try. (I am also highly ER+ and PR+.)
-
FastWalker, I typically have no problems with medication but had terrible SEs with tamoxifen, so maybe you'll be exactly the opposite!
-
Hi all! For what it is worth, I refused Tamoxifen and AI's. Was in chemo-pause and the onc thought that I would stay there. Wrong, periods returned after 15 mo. Anyway, d/t many extreme complications to chemo, had to stop. I also refused rads (would have started 11 mo post dx.) and hormonal therapy 18 mo after dx. By that time was ready to chuck it all, not at all interested in further complications. My ER/PR both 70% and HER2 100%. I'll be five years out in January 16, so far, so good. If I have a recurrence, well, I'll deal with it at that time. No regrets at this time. BTY, my sister was dx'd two years ago, currently on Tam, and hating life! Has all the SE's (her onc dismissive of course) and she is not sure she will continue for the full ten years. After all this, I am a firm believer in following your gut feelings.
-
SummerAngel: I like the way you think - hope you're right!
moni731Glad you are doing well! . . . Sorry about your sister. That's so annoying when doctors deny the side effects. We know our bodies.
-
My oncologist told me I should only be on it for 5 years because I was considered low risk; Stage 1, Grade 1. I want to get off of it after 5 years, (one year and 2 months to go) but I also want to make sure it is the right decision. It is interesting hearing what other oncologists have to say.
-
I want to hear about this as well.
-
My doctor told me I'd be on endocrine therapy for 10 years if not for life. I was so against it until I did a bunch of research and found way too many women, including those with low grade, low oncotype scores who progressed to stage IV after quitting endocrine therapy. It's still a crapshoot as breast cancer can become resistant to therapy, but I think it is worth taking for the long term.
-
I was 12 years older than you when diagnosed with a oncotype score of 8, node negative (but multifocal bc - stage 2A) and a family history of bc. I am also a DES daughter. I had bilateral mastectomy and reconstruction.
My oncologist talked to me about the possibility of continuing for an additional 5 years of tamoxifen and I was willing to go with her recommendation. (After reading all the literature I felt that either continuing or stopping were both reasonable options for me.) After conferring with my ob/gyn both my oncologist and ob/gyn clearly recommended against continuing. (I had decided not to switch to an AI because of family history of osteoperosis and few side effects on tamoxifen- though one large endometrial polyp that needed to be dealt with.) The feeling was that being a DES daughter sort of made me a black box when it came to continuing with tamoxifen and that I was relatively low risk for recurrence.
-
This is a good conversation. I have seen information about the BCI test, some say it is the oncodx for continuing Tamoxifen? http://www.answersbeyond5.com/. I have not come across anyone that actually had it done, and it's a long way off for me but thought it was worth a mention for those of you that are close to 5. I would love to hear back if anyone has it done.
Ugggh, Katcar. The thought of 5 to life just makes my stomach sink!
-
Englishmummy - I am right there with you. Let us hope that something new comes our way before we have to make that decision. I am very interested in the BCI test. I am going to ask my MO about it next visit.
-
Katcar- I am going to ask mine about it too....I am curious what they will say.....likely both say different things, right? Seems to be that way with BC. lolI have had my obgyn, my onc, bs and the nurse navigator all imply that there are break throughs close, so I am keeping my fingers crossed....honestly, I worry more for my girls - I hate to think they will ever have to deal with this.
-
Englishmummy - I cannot even imagine the worry for your daughters. I would have been the most over-protective mom, ever. My MO never seems to be aware of anything on the cutting edge. He's a nice guy, and I like him on a personal level, but he doesn't impress me much so far. The other thought I have, is that by the time we are ready for that decision, the tests will have improved as well. Maybe it is too soon for the BCI test?
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team