Recurrence after refusing hormone therapy?
Comments
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As muska said, since AIs and tamoxifen have been proven to significantly increase survival rates, there are ethical issues with randomized clinical trials in which one arm would be on hormone therapy and one arm on placebo.
However, I came across this nested case-control study which compares persistent vs. non-persistent hormone therapy:
Women who were non-persistent (>180 days without hormonal therapy) had a significantly increased adjusted recurrence odds ratio (OR) of 2.88 (95%CI 1.11, 7.46) compared with persistent women. There was no significant association between low compliance (OR 1.30; 95% CI 0.74, 2.30) and breast cancer recurrence.
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Novmoon, I've never heard of a gene that means you can't tolerate radiation. Can you tell us more??? What happens if you do have rads??
I started Arimidex when I started rads and had to stop it until I finished rads. I did find that when I re-started it, I handled it much better. Your body does get used to the drug and a pretty much all the SE's stopped. I still take Loratadine (Claritin's active ingredients but much cheaper) which helps a LOT with bone pain.
I'll take SE's rather than die. I know quality of life is important, but you have to have life for it to count!
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ErenTo and muska, thank you for the information and links to studies.
The education and advice here has persuaded me to try Tamoxifen. barbe1958 is right that dealing with SEs is better than death. Also, my oncologist can change my medication if the SEs are too severe.
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Hi:
For completeness, I note that there are studies that show that benefit is increased with longer durations of tamoxifen treatment and which did observe an effect of adherence to endocrine therapy (compliance). See e.g.,
(a) Treatment Adherence and Its Impact on Disease-Free Survival in the Breast International Group 1-98 Trial of Tamoxifen and Letrozole, Alone and in Sequence
Chirgwin (2016): http://jco.ascopubs.org/content/early/2016/05/19/JCO.2015.63.8619
Full pdf version available via PatientACCESS option for US $2.00 with registration at Copyright Clearance Center.
Hershman commentary (2016): http://jco.ascopubs.org/content/early/2016/05/19/JCO.2016.67.7336.full
BC.org summary: http://www.breastcancer.org/research-news/not-taking-hormonal-tx-leads-to-more-recurrence
(b) (2-years tamoxifen in post-menopausal women) Randomized Trial of Two versus Five Years of Adjuvant Tamoxifen for Postmenopausal Early Stage Breast Cancer
Swedish Breast Cancer Cooperative Group (1998): http://jnci.oxfordjournals.org/content/88/21/1543.full.pdf
(c) (2-years in pre-menopausal women) Two Years of Adjuvant Tamoxifen Provides a Survival Benefit Compared With No Systemic Treatment in Premenopausal Patients With Primary Breast Cancer: Long-Term Follow-Up (> 25 years) of the Phase III SBII:2pre Trial
Ekholm (2016): http://jco.ascopubs.org/content/early/2016/05/05/JCO.2015.65.6272.full
BC.org summary: http://www.breastcancer.org/research-news/2-yrs-of-tamoxifen-offers-long-term-benefits
Again, as explained in detail in an earlier post, recurrence risk information provided in the OncotypeDX report for invasive disease is after 5 years of endocrine therapy.
BarredOwl
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Owl, wouldn't post-menopausal be Arimidex? I thought Tamoxifen is for pre-menopausal women, but I could be wrong...
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Hi Barbe:
Tamoxifen can be used in pre-menopausal or post-menopausal women. This 2014 ASCO guideline (for invasive breast cancer) indicates that tamoxifen can be a suitable choice for some post-menopausal women.
2014 ASCO guideline: http://jco.ascopubs.org/content/32/21/2255.full.pdf
For completeness, I also include the 2016 Update re Ovarian Suppression in light of SOFT/TEXT: http://jco.ascopubs.org/content/early/2016/02/11/JCO.2015.65.9573.full.pdf
In pre-menopausal women, the ovaries are largely the source of estrogen. In post-menopausal women, estrogen is produced in a different way by non-ovarian tissues using the enzyme aromatase. Tamoxifen can be used in pre- or post-menopausal women because its mechanism of action in breast tissue (or on breast cancer cells) is to block estrogen from binding to its receptor, and it can do this regardless of the source of production of estrogen.
In contrast, aromatase inhibitors are inhibitors of estrogen production by non-ovarian tissues. They work by inhibiting the aromatase enzyme-mediated synthesis of estrogen from certain precursor molecules by non-ovarian tissues. Thus, aromatase inhibitors are used in those not producing estrogen from ovarian tissues (i.e., post-menopausal women, including those who have received bilateral oophorectomy; and certain higher risk pre-menopausal women receiving ovarian suppression drug plus an aromatase inhibitor).
In general, suitable initial endocrine therapy options may include one or more of the following, depending on various factors, such as type of cancer, recurrence risk profile, and co-morbidities:
Pre-menopausal:
(a) Tamoxifen alone; or
(b) Tamoxifen with added Ovarian Suppression (to suppress/shut down ovarian function, e.g., with a second drug); or
(c) Ovarian Suppression (OS) plus an Aromatase Inhibitor (AI) (in pre-menopausal women, OS is required with an AI to shut down ovarian function; using both is intended to stop estrogen production from all sources)
If bilateral oophorectomy is received, see post-menopausal options ==>
Post-menopausal (this includes patients whose ovaries have been removed by bilateral oophorectomy):
(a) Tamoxifen; or
(b) Aromatase inhibitor
The drugs have differing side effect profiles, which may be another consideration in selecting a particular drug or sequence of drugs. Aromatase inhibitors also show some advantage in certain subsets.
BarredOwl
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Great info Owl. If I have no breast tissue is that another reason why they did an AI?
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I am also going for a second opinion tomorrow as well. My pathology report showed 100% of my tumor cells have both estrogen and progesterone receptors. No leeway there: 100%. My MO is of the opinion that what you put in your body has no effect on the cancer. She and I are diametrically opposed in this. She says I can eat whatever soy I want. Ummmmmmmm, really?
I held off on the Arimidex a few weeks, and then took the plunge. I've been on it a month. I know it's early, but so far no problem.
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Hi barbe:
My summary above is for the initial or "adjuvant" endocrine therapy for early stage (Stage I, II, III) breast cancers.
In the adjuvant setting, both tamoxifen and aromatase inhibitors show benefit in reducing:
(a) local same breast recurrence;
(b) contralateral (opposite) breast cancers; and
(c) distant (metastatic) recurrence.
Even with a mastectomy, there is some breast tissue remaining. Regardless of surgery (mastectomy, lumpectomy), there is also some risk that prior to surgery, some tumor cells may have escaped the area and already moved to distant sites (laying the foundation for distant recurrence). As a systemic treatment, tamoxifen can block estrogen from binding its receptor in breast cancer cells at distant sites, as well as locally. Aromatase inhibitors reduce estrogen availability, also regardless of the location of the cell (local or distant).
I am not familiar with the criteria used to select a particular endocrine therapy drug in the recurrent or metastatic setting. However, NCCN guidelines appear to include tamoxifen in the appropriate case.
BarredOwl
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Hi KayMc1, with regards to diet it's probably wise to eat everything in moderation and this advice applies to everybody, not just BC patients. The effects of soy on breast cancer appear to be overrated and your MO might be only slightly exaggerating by saying you can eat all the soy you want.
Editing to add link to some studies: Soy
"Results from an analysis that combined findings from multiple studies in Asian populations found that women who ate high amounts of soy had a 25 percent lower risk of breast cancer compared to those who ate lower amounts.When the same analyses were done in studies of U.S. and other Western populations, there was no link between soy and breast cancer risk."
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Hi:
There is a pretty good article about soy from this site, distinguishing between types of soy and sources (e.g., organic):
http://community.breastcancer.org/livegreen/the-soy-question-safe-to-eat/
This comprehensive document from UCSF also discusses soy. See the discussion and cited references starting at page 35:
http://cancer.ucsf.edu/_docs/crc/nutrition_breast.pdf
Many of the recommendations in the UCSF document are advisable in view of their general health benefits. In many cases, there are conflicting studies. The explanations address some cancer mechanisms, and may help motivate one to cut added sugar (e.g., discussion at pages 11-14 and illustration). They also address the benefits of exercise (pages 27-29).
The definition of serving size can be found in the chart on page 20, top row, center:
"One serving = 1⁄2 cup fruit or vegetable
1 cup raw leafy greens
1⁄4 cup dried fruit or vegetable"
The nut serving size is in the chart on page 19, row three, column three:
"Limit consumption of nuts to no more than 1⁄4 cup with meal or snack to limit total fat and calories."
This information can help with step-wise improvements in diet and exercise that are doable and make sense to you. For example, I cut fruit juice and pasta, reduced added sugar and milk, increased consumption of leafy greens, cruciferous and other vegetables, and began a walking program. On the other hand, while I take Vitamin D3, I do not take other supplements. I have eaten flax and chia, but in much smaller amounts and not recently.
BarredOwl
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If someone grows up eating soy as a regular part of their diet (think Asia) it is totally different than someone adding soy as an adult. The Asian study caused a lot of confusion years ago.
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Hello ladies. I took my first Tamoxifen earlier today. Lord, it was a challenge. You'd think I was swallowing arsenic the way I acted.
We'll see what happens. Thank you for the encouragement. I hope you all are doing well!
Julia
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Kaymc1: my MO also said I can continue having soy as I am dairy free. I only add it to my coffee and the odd bowl of cereal maybe once a month so I am not getting a lot. Everything in moderation! I am 95% ER & PR
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I think the issue is about processed soy, such as in meat and cheese alternatives. Regular, unprocessed, soy is fine.
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My MO at an NCI cancer center said a serving a day was fine. The Vanderbilt Study actually showed that women who eat soy do better
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The soy available in the US is different from that traditionally grown in Asia. There are different cultivars here (and not necessarily even GMO in the strict sense of the term) that have been bred to increase yield and enhance modification into meat analogues and facilitate extraction of the oil (for cooking or refined into biodiesel). U.S. soy is raised mostly for industrial purposes (including the processed food industry). Soy raised in Asia is grown primarily to be eaten either unaltered (as edamame), or minimally processed into soymilk and tofu, or fermented into shoyu and tamari. Because that populace’s diet isn’t as meat-centric to begin with, there is less demand for soy-based fake meats such as crumbles, sausage, burgers, etc. Furthermore, there is a human genetic component as well—certain foods are more beneficial and less harmful for certain populations. (The Navajo went from healthy to metabolically-ill within a generation or two on the std. American diet heavy on processed starches & sugars; and the “French paradox” might not work as well for those who don’t share the same heredity as the French). And very few Americans of non-Asian extraction grow up eating soy (which for many people is an allergen). Asians are more likely to be lactose-intolerant, with indigenous diets devoid of dairy—but when switched to a std. American diet desire digestible dairy substitutes.
My MO says edamame and the occasional serving of tofu or even shiratake noodles (made from tofu) are fine, but to steer clear of soy-based meat analogues (b’bye, Boca Burgers). As to soymilk, try unsweetened almond and/or coconut milk as dairy milk substitutes—soymilk requires too much sugar to mask the grassy-chalkiness.
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Hi Georgia,
My first cancer was very similar to yours (except that mine was PR-). I had Lumpectomy, Chemo and radiation. Tamoxifen would have been recommended for me except that I was 32 and hormone supresant drugs could have sent me into very early menopause with the risks that come with it.
I do not regret the decision. I did not have a recurrence and have lived 17 happy good quality years before the merry-go-round has started again, but if I had not been that young, I believe I would have taken the Tamoxifen. Any chance of impriving the percentages, even by a fraction, is worth trying, especially as you can stop if it does not agree with you.
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Julia, Tamoxifen is not just a preventive drug. It is also a treatment. I refused Tamoxifen after lumpectomy and radiation. It was my treatment for a couple of years when my cancer spread. I tolerated T well. I have extreme side effects with Aromatase Inhibitors but Tamoxifen was easy. I had an endometrial ablation years ago; that may have protected me from one side effect.
I think it can be devastating to deal with medical side effects while attempting to recover from breast cancer surgery and other treatment.
I don't regret not taking Tamoxifen, or not even trying it, after my Stage I. Life was tough enough. No regrets. I hope you have no regrets either. Best wishes for a long happy life
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JUL1970 you can see we have a similar diagnosis except I was 28 when diagnosed, I also chose not to have the Oncotype test so I don't have a result. Less than 2 months after my unilateral mastectomy I began taking Tamoxifen, like you I was afraid of an immediate effect, like my head would start spinning in a demon possessed fashion. Nothing happened.
Contrary to what some have said you can have SE's sooner than a week much less a month. Within 2 days of taking Tamoxifen I began to have vaginal discharge (like a leaky faucet, argh) and at the 7 day mark I had my first hot flash. Those were my only SE's for awhile but irregular/frequent and heavy periods were next. After about six months I became sick, nauseous/ dizzy/ headaches on a daily basis. I did try to manage these SE's but my life revolved around my SE's, pill after pill and I still felt extremely unwell. Due to an upcoming surgery (hysteroscopy novasure ablation, which didn't work, and laproscopic tubal ligation) I decided to take a break from Tamoxifen after 7 & 1/2 months. I didn't want to feel sick before during and after the surgery. I was also at my witts end with feeling so bad. Despite surgery I quickly felt better and couldn't imagine taking Tamoxifen and dealing with its SE's again. More than 1 year after stopping the drug I still have vaginal discharge. The SE that never went away. Almost 2 years since my cancer was removed, more than 1 year off of Tamoxifen and no sign of recurrence.
I recommend you try the drug but don't hesitate to stop it if you want to. Don't let people use statistical terrorism to convince you it's your duty to take the drug because it's available, because it will reduce your risk for recurrence, because if you don't take it means you want to die blah, blah, blah...
I'm afraid I don't have a link to an article that really convinced me it wasn't worth my quality of life to take the drug but basically it made me understand in plain terms that the 50% risk reduction came from a study where there was around a 3% difference between women who received chemo and women who received chemo and tamoxifen and had a recurrence. Both of these sets were in the 90%'s with no recurrence within 5 years by the way. So in a way that only statistics can work an actual 3% difference is translated into a 50% risk reduction for us. I'm sorry if I don't seem clear it was over a year ago when I was researching.
If I hadn't had the miserable SE's I would have kept taking the drug. But I did and I don't feel bad about stopping.
ETA: I did a little backtracking and the article I recommend reading is on opposingviews.com and is titled "Tamoxifen: What difference does it really make?" just do a Google search and it should pop right up.
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I am post menopausal, but have been taking Tamoxifen for a year, after SEs from Aromasin became a bit too much. Only SE I have is irritating hot flashes, which have been getting better. Fear of the unknown is not productive. I would at least try this life saving drug.
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Lefty if you still have the discharge who says it's from Tamoxifen? I hope you have had it checked out as we have enough to deal with as women! I don't even get hot flashes from Arimidex though when I first started taking it I got nauseous. My body got used to it and I don't feel sick anymore.
I'd like to think you'd get longer than 5 years out of Tamoxifen. I recurred at year 7 almost to the day.
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barbe1958 The vaginal discharge began with Tamoxifen, it's one of the most common SE's. The drug revvs up your ovaries. It was at one time used as a fertility treatment for goodness sake. I don't have infections, any cause to believe the unchanging vaginal discharge that began with taking Tamoxifen is caused by anything else. I've mentioned it to my GP, no concern from him but I will be talking to my GYN very soon at my annual. I feel like the drug started my ovaries up and they haven't quit since...
Also I had eye floaters surface about two months after I started Tamoxifen. In my case they did not worsen while I was on the drug but that's an irreversible SE. Not that Doctors would even admit to that being a SE lol My Optometrist very clearly gave me a list of eye conditions caused by Tamoxifen and "floaters" is not one of them. However at 28, no prior vision or eye conditions I'm hit with something that generally begins affecting women later in life due to aging, it's fairly obvious to me what caused it. I know my condition is harmless but it goes to show there are many things that will change in our bodies, perhaps irreversible, that we can't predict and the Doctors don't acknowledge.
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I had a few side effects that my (former) MO said were not on the list for Tamoxifen. I said, "Sorry. My body apparently failed to read the list and see how it was supposed to respond to the medication." Sometimes doctors forget that we are individuals and our genetic make-ups are different in how we respond to things. Our bodies don't always follow "the rules"
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KBee- Exactly!
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Alitxu - Thank you for the advice. I decided to give Tamoxifen a try. I started on Sept. 27. If the SEs become unbearable, I will stop.
TarheelMichelle/Ronda - You have had a tough battle! You're one tough cookie. Thanks for telling me about your experience with Tamoxifen. I hope you are well.
LeftyWasMyFavorite - thank you so much for the link to the Tamoxifen article, and sharing your experience. I am on Day 3 of Tamoxifen, and I'm experiencing stomach pain that is all day (I also take 1 iron supplement, so that is contributing, I'm sure), dull headache, fatigue, spaciness and feeling unwell/malaise. I have brief moments of feeling irritated. I am only taking one 10mg Tam in the morning because the stomach pain causes anxiety about taking the evening pill. I left a message with my oncologist's office asking if I should stop the iron supplements to see if that helps the stomach pain or what. Hopefully it will go away as my body adjusts to the medicine.
KBeee - I am sorry to learn you had a recurrence despite chemo and Tamoxifen. Our body chemistry is individualized, and I think doctors don't know what to expect when they give us treatment. It's the standard, so they give it to us and see what happens. How are you doing since your August 25th radiation therapy?
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Jul1970 iron can constipated you horribly. Some of your pain could be bowel. If so try Senokat S which is a natural stool softener and laxative with no cramping. Were you told to take iron? It can exacerbate arthritis and cause bone pain as well. Try ginger for your tummy.
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Jul1970, So far, so good! I do have a routine appointment next week. I'd be lying if I said I was not nervous. Last time I recurred 14 months after finishing chemo. 14 months this time will be October. I keep waiting for the other shoe to drop....... Hoping it doesn't this time! Hoping tamoxifen goes well for you with minimal side effects, and that itdoes the job!
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Hi, I'm new to this forum. I've been reading this thread because just like jul1970, I fear taking tamoxifen. It's been sitting in my cupboard for a while now. Some side effects are indeed irreversible. The drug could stop recurrence of breast cancer but then increases the risk of a uterine cancer? Is that a "better" cancer to have? 😕 I'm not sure if it's really worth taking it.
Jul1970, I hope you're doing well. I'm very curious to hear how you are doing since you started taking it almost a month ago now.
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Nat, don't be scared of tamoxifen, I personally am more scared of recurrence rather than the very low risk of uterine cancer. (It is very low), reoccurrence risk of BC is very high if we don't take a drug like tamoxifen. I also have had very little side effects. And ther is only one way to find out....take the drug and see
good luck!!
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