Ask about your recurrence risk & impact of hormone therapy
I'm so glad I asked my clinic doctor information about my recurrence risk and the impact of hormone therapy in reducing that risk. I have a 25% recurrence risk and letrozole (and any other hormone therapy) reduces that risk by 10%. So my risk goes from 25% without hormone therapy to 22.5% with hormone therapy. Given the side effects that I was having, I now feel comfortable with making my treatment decision. It would have been helpful to have this information right from the beginning.
Comments
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For those of us with early stage breast cancer, we get the Oncotype test done. It explains the risk without Tamoxifen and the risk with Tamoxifen. Did you know that you can take Tamoxifen even if you are post menopausal? The side effects are tolerable and most of the time, I do not notice them. For most of us, the benefit outweighs the side effects. For others, I feel so sad that they cannot take anti hormonals because of side effects. I wish you all the best with your treatment decision.
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Hi Michelle_in_cornland, thanks for your response. Yes I am aware that I could take Tamoxifen. In fact, it was my oncologist's first choice until I told him that my mother ,who had breast cancer, had a blood clot in her lungs from Tamoxifen. We decided that I'd do the AI instead of it. Best, Opale
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One plus of Tamox. for postmenopausal women is that it doesn't weaken bones the way AIs do and may even strengthen them. This is so because unlike AIs it does not reduce the amount of estrogen in the body but rather blocks tumor-cells' estrogen-receptors' access to estrogen. It doesn’t affect skin or hair properties, either. But there are also definite downsides for postmenopausal women:
- It can cause cataracts to form, and existing cataracts to “ripen" faster.
- It can cause endometrial (uterine-lining) cancer in women who have not had hysterectomy.
- It can cause retro-peritoneal cancer (cancer of the rear surface lining of the abdomen, behind where the uterus used to be) in women who have had hysterectomy; and that form of cancer is much more aggressive than uterine or breast.
- Most importantly for postmenopausal women—already at greater cardiovascular risk even absent other risk factors—it can cause blood clots. The earliest stage is deep vein thrombosis (DVT), which becomes more dangerous if the clots break free and move through the bloodstream. If they land in coronary arteries, the result is a heart attack; if in the brain, the result is an ischemic stroke (both of which can be deadly but often survivable at least the first time); but if they lodge in the lung, pulmonary embolism…which can kill instantly.
- And in women with chronic depression, because of the enzymatic pathway it inhabits, it considerably restricts the number of antidepressants which can safely be taken with it.
Moreover, studies have begun to show (in the years after Genomic Health developed its prognostic report graphs in the results of OncotypeDX tests) that because AIs reduce the amount of estrogen that postmenopausal women produce in adrenal and fat cells, they are somewhat more effective than Tamoxifen in preventing recurrence. There are newer online predictive tools such as Adjuvant Online that measure not just Tamox. but AIs as the baseline adjuvant treatment with & w/o chemo. I would not be surprised if Genomic Health were to begin including AIs in its comparative prognostic indices.Both Tamox. and AIs can cause joint pain, fatigue, hot flashes, sleep impairment and weight gain to varying degrees.
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My SIL was one of the unfortunate few that developed GYN cancer from tamoxifen, it is in her abdomen and lymph nodes. Last I heard she is adjusting to the chemo she is receiving. She has been doing chemo over a year now. Prognosis is not good but she seems to be getting better.
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Thanks for the info Sandy. There have been recent studies regarding antidepressants and Tamoxifen which my MO provided me with. Endoxifen can be tested for efficacy as well. I could not take a chance of osteonecrosis of the jaw from osteoporosis meds due to use of AI's. I have alot of dental work that is finished and some ahead of me. Perhaps implants in the lower jaw. With slight osteopenia, my MO decided that Tamoxifen was better regardless of the other risks. Glad that I had the hysterectomy/oopherectomy. I feel great as long as I am walking 5 miles per day and eating a clean diet.
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The whole point is to take charge of your own health, ask a ton of questions, including the risk and benefits of treatment that are recommended to you so you makes the right decision for you based on your personal information.
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Opale...I'm confused. I thought anti hormone therapy cuts your recurrence rate by half. Which would mean that it would then be !2.5 percent. I'm not saying your doc is wrong just wondering how he/she came to that conclusion. Is it an individual statistic? If so, then we all have an individual recurrence rate and the 50 percent reduction is incorrect. I have refused aromatase inhibitors fro several reasons which is why I'm curious. There are many women who have moderate to severe SEs and knowing the true reduction rate wold be extremely helpful in making decisions. Thanks so much.
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I'm confused as well. For a risk reduction that small, it would not be worth it to me to continue taking the AI I just started last week. I already have osteoporosis in my spine from my first breast cancer treatment in 2008. I'm on Prolia now and concerned about ONJ as well.
Maybe I misunderstood the benefits of taking the meds in my particular case? I need to call my MO again...
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I suggest you ask your doctor your recurrence risk and the reduction in that risk from taking AI (specifically how that changes your risk factor). I did double check with my doctor. At first, I optimistically heard that my risk reduction would go from 25% to 10%. That was not correct. The 25% risk is reduced by 10% to 22.5% for me at my age and with Stage 3 breast cancer. I asked her to confirm and I have that information in writing directly from her so there is no error in my understanding. It all depends on you and your cancer risk. Get the information specifically for you so you can make the right choice for you.
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I'm going to get clarification from my doctor. I have information in writing from her. But need to understand how the reduction in risk "by 10%" works. I'll get back to the forum once I get clarification. Is the 25% risk reduced by 10% to 15% (60% reduction in the risk factor) or is does the 10% reduction apply to the 25% risk factor and make it 22.5%? I believe there is an article on this site about how to calculate risk and risk reduction. I'll keep you posted. Best, Opale
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Here's the link to this site's article on reduction of recurrence risk with all the math spelled out. Hope that helps: http://www.breastcancer.org/treatment/planning/und...
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Right, so according to this site, the risk reduction as a percent is taken off from the absolute risk a woman has. So you're correct in your math that for you, the absolute risk would go from a 25% to a 22.5% risk. 10% risk reduction sounds great until you think of it in these terms.
I've been so uneasy taking this AI, and that's after being on Tamoxifen for 6.5 years. I had a recurrence 8.5 years after my first dx. DId the Tamoxifen keep the recurrence (or new primary??) at bay, and then it started to grow when I stopped hormonal txt? This is what I can't reconcile.
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For me, if I wouldn't have had side effects that were impacting on my QOL, I would have continued with my AI treatment. For me, after going thru cancer, I have strong feelings about QOL and living each day to the max. That's my personal perspective following my cancer "journey". I want to live better and better each day. A 2.5% reduction in risk doesn't equate with a significant deterioration of my mood, energy etc. It's all about having the right information to make the best personal choices. Let's push our doctors to get all the information we need to make our own decisions using their expert guidance. Best, Opale
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I think we need to separate out the different types of risk. For those who have had both breasts removed, the risk of recurrence locally, in either breast, is lower, though not zero. It seems that AI's have more of an effect on local recurrence, in the breasts, than on distant recurrence. My oncologist said I could stop at 5 years because the risk is so small at that point, because I have no breasts. I want to know more about risk at 2 years, 3, or 4.
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Hi windingshores, that's interesting information. It gives me another question that I can ask my oncologist. Best, Opale
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Hi Opale:
I agree with inquiring whether the 25% "recurrence risk" estimate is an estimate of distant (metastatic) recurrence risk only OR whether it also includes your estimated local and contralateral in-breast recurrence risk.
Please also confirm the size of the "relative risk reduction benefit" in your case and related calculations of absolute benefit and residual recurrence risk with treatment. Please confirm it with your team, but this is how I understand the calculations:
(Risk) x (relative risk reduction benefit; e.g., 0.50 if 50%) = (absolute risk reduction benefit)
(Risk) - (absolute risk reduction benefit) = (residual recurrence risk with treatment)
Patients may receive different information about "relative risk reduction benefit". This might reflect possible differences in relative risk reduction benefit based on clinical trials in different settings (e.g., stage IIIB versus earlier stages), or at different points in time (along the continuum of treatment).
This raises the question of the baseline from which recurrence risk is being estimated. Please also ask whether the quoted 25% recurrence risk is the total recurrence risk remaining after chemotherapy and prior to any tamoxifen treatment, OR whether it is the recurrence risk after chemotherapy plus around 3 years of tamoxifen. The latter goes more specifically to the additional benefit to be gained by continuing treatment.
Best,
BarredOwl
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Hi BarredOwl, you are awesome. Yes, these are exactly the questions that need to be answered! Thanks so much for your support. I want to ensure I really get the right numbers for me and thoroughly understand them before I make my decision to continue or stop Letrozole. Best, Opale
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I saw my oncologist yesterday. Here's my understanding how the recurrence numbers work. You may want to talk with your oncologist to find out your numbers and how they work too. These are based on my personal risk factors and the aggressive cancer that I had – Stage 3 and a large tumor (7.5 cm) even though I responded amazingly well to treatment. The tumor size was 0.05 cm after chemo.
Without any hormone therapy - my risk of recurrence is 2.5% per year. 5 years after diagnosis. the statistical probability that I'll have cancer is 12.5% (2.5% X 5 years).
Hormone therapy reduces my personal risk by 30%. That means the 2.5% per year reduces to 1.75% per year. This means that my risk of cancer over 5 years is now 8.75% (if I take hormone therapy for each of those 5 years) instead of 12.5%. This is a reduction of risk of 3.75% total.
Over 10 years, the reduction of risk from taking hormone therapy is greater.. Without hormone therapy for 10 years, my risk of recurrence is 25% (2.5% X 10 years). With hormone therapy for all 10 years, my risk is 17.5% (1.75% X 10 years). The reduction in risk is 7.5% total over that 10 year period.
I'm weighing this statistic info against the side effects from treatment. Perhaps the funniest part of this whole exercise is that I don't know which side of the equation I'm already on or will be on. He did suggest trying another AI to see if the symptoms were more tolerable and consider continuing treatment for the full 10 years if the side effects reduce. All good advice to consider. Best, Opale
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Opale...thanks so much for the clarification. IMO these stats don't mean as much for those who do well on anti hormones. They can take it for any reduction of recurrence. The problem lies with those of us who can't tolerate them or refuse them for other reasons. We need all the information we can get to make informed decisions. Good luck to all navigating this complicated disease.
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Hi dtad, yes I agree. Weighing the benefits and risks is very important. These drugs have lots of side effects and it's very personal to the individual.
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How many of us can accurately interpret the data we are given, usually right after the crushing blow of a diagnosis, and make empowering decisions? From what I can see, statistics on cancer recurrence and related treatment data cause much more confusion than peace of mind.
Even the collection and assessment of such data is problematic, because of fast-moving treatment breakthroughs. Typically, patients misinterpret the data as a crystal ball or a bullet-proof vest. I know I'm guilty. Patients become confused, and they come to the Internet searching for answers and wind up here. Right? It's time for a change.
It is absolutely essential that doctors take responsibility for making surepatients understand what these numbers mean. Or they have no value at all.
Breast oncology appears to be widening its net, moving from treating women AFTER symptoms develop, to treating women as Stage IV from the outset. I am Stage IV, and my treatment is exactly the same as Opale, exactly the same as a typical hormone-positive Stage I patient after surgery and radiation. We are all under daily drug treatment, whether it's called preventive or active. I expect to be in active (constant) treatment for the rest of my life, because I'm Stage IV, and I have cancer tumors throughout my body. Is constant treatment becoming the norm for all breast-cancer survivors?
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ChiSandy, could you point me to your source about the link to retro-peritoneal cancer? I've never heard of that link before (despite my massive research) and when I did a quick google search it quickly became overwhelming. Thanks!
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You roughly double the recurrence risk without tamoxifen. Oncotype assumes the use of an antihormonal
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Here's what the Oncoplex site says "If you have already been tested and have received your Oncotype DX® breast cancer test report, you will have discussed the results with your doctor*. This section can also help you understand what the information contained in that report means.
The test produces the Recurrence Score® result, a number between 0 and 100. Patients with lower Recurrence Score results have a lower risk of their cancer returning. They will also be less likely to benefit from chemotherapy. However, this does not mean that there is no chance of the cancer returning. Similarly, a higher Recurrence Score result means that there is a greater chance of the cancer returning. A higher Recurrence Score result does not mean that the cancer will always return. These patients will have a higher likelihood of benefiting from chemotherapy as part of their treatment." I found it helpful to discuss my risk directly with my doctor so I could make an informed decision of what was right for me. Best, Opale.
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Hi everyone...just want to point out that there are no studies on people that do not do anti hormone therapy and there probably never will be!
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Re: ". . . there are no studies on people that do not do anti hormone therapy and there probably never will be!"
Perhaps it would be more accurate to say that there are no contemporary placebo-controlled trials of initial adjuvant endocrine therapy within the first 5 years of diagnosis. However, the FDA approval of Tamoxifen was based on placebo-controlled trials of Tamoxifen.
For example, in the setting of early invasive breast cancer, in NSABP B-14, patients received Tam Alone versus placebo and no patients received chemotherapy.
NSABP B-14: "NSABP trial B-14 (entitled "A Clinical Trial to Assess Tamoxifen in Patients with Primary Breast Cancer and Negative Axillary Nodes Whose Tumors Are Positive for Estrogen Receptors") enrolled 2892 patients who were randomly assigned to receive placebo or tamoxifen between January 4, 1982, and January 25, 1988, and enrolled 1235 additional patients, all treated with tamoxifen, between January 26, 1988, and October 17, 1988."
Today, the body evidence has established that the potential benefits of endocrine therapy are proportional to residual risk after all other treatments (if any). Thus, the relative risk reduction information derived from older trials can appropriately be used in determinations of potential absolute benefit in connection with personalized risk/benefit analyses, despite potential differences in residual risk due to the use of contemporary chemotherapy and/or radiation regimens.
Later, in accordance with best practice and ethical constraints on suitable comparators in clinical trials, Tamoxifen served as a standard of care comparator in various trials of Aromatase Inhibitors, in which various AIs were shown to have comparable or slightly better activity than Tamoxifen (e.g., ATAC and BIG 1-98 in the setting of early stage invasive breast cancer).
I note that more recently, in the setting of extended adjuvant therapy (beyond five years), placebo-controlled trials in which all patients received an initial five years of endocrine therapy, and then were randomized to AI or placebo, have been conducted.
BarredOwl
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Hi BosumBlues:
As MelissaDallas correctly notes, the risk information shown in the Oncotype reports shows the results for patients who were all assigned to receive five years of Tamoxifen (Alone or with added chemotherapy). Thus, the risk information in the test assumes receipt of endocrine therapy. This is because the Oncotype test and reports were designed for use in certain hormone receptor-positive, HER2-negative patients whose distant recurrence risk warrants consideration of chemotherapy, and who would also receive a recommendation for endocrine therapy under current consensus guidelines for the treatment of breast cancer.
Thus, the OncotypeDX test and data featured in the reports goes to the question of whether to add chemotherapy to endocrine therapy. However, your Medical Oncologist can provide you with an estimate of your distant recurrence risk with no endocrine therapy (e.g., 10-year risk of distant recurrence).
BarredOwl
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Thanks for all the info. guys! All I'm really saying is that no one is following those of us who have decided not to do anti hormone therapy. Good luck to all....
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In bed early tonight because my legs hurt so much. This is really helpful information!
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