How Many are doing 10 years on Aromatase Inhibitors
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breaking news!
Taking a Break From Letrozole Therapy After Breast Cancer
“....SOLE was published online November 17 in Lancet Oncology.
The investigators, led by Marco Colleoni, MD, from the International Breast Cancer Study Group in Milan, Italy, conclude that the study results on "intermittent administration [of letrozole] provides clinically relevant information about extended adjuvant endocrine therapy with letrozole and support the safety of this option for temporary treatment breaks in select patients who may require them."
https://www.medscape.com/viewarticle/889157
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Great news. Thank you for finding and posting. I've just started AI but MO said it was likely for 10 years. Hoping will be this shorter duration.
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CTS5 Predicts Late Distant Recurrence in Hormone Receptor-positive Breast Cancer: http://www.cancertherapyadvisor.com/sabcs-2017/cts...
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How to Block Breast Cancer's Estrogen-Producing Enzymes: https://medivizor.com/view_article/10643337
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SuzQ - thanks for sharing. I think this is the route I will take, too, if I decide to continue.
Margo - this is great info! Thanks so much for sharing!
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Blood Test May Predict Breast Cancer Recurrence: http://ecog-acrin.org/news-and-info/press-releases...
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I was getting on to post the article I read this morning about circulating tumor cells. Margo, you beat me to it by 18 minutes! I think that is an interesting article and I'll be sure to ask my onc about it as I approach my five years.
SuzQ that's good to know. 2 years seems much more doable than 5!
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sorry, accidentally deleted previous post - thought I'd posted twice - I forgot which board I posted it in - chemo brain
Blood Test May Predict Breast Cancer Recurrence http://ecog-acrin.org/news-and-info/press-releases...
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More studies are needed, but I'm hoping 2 additional years will be recommended. Much more doable than 5. I believe I will be one of those patients that will be recommended to extend therapy.
https://www.medpagetoday.com/meetingcoverage/sabcs...
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Suz-Q---I'd be surprised if they recommended you extend therapy. With an Oncotype score of 10 and no lymph node involvement I'd think you'd be fine stopping at 5 years. You could always do the BCI test for further peace of mind.
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The nurse practitioner at my MOs office said my BCI would most likely come back in favor of extending hormone therapy. I am planning on having the BCI done when I get closer to the 5 year mark. I really don't want to do 5 more years. I've been doing a lot of research and I will make that decision 3 years from now. With my Oncotype score of 10 and using hormone therapy, I have a less than 1% chance of recurrence at the 5 year mark. I count myself as being very fortunate
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Interesting Suzi...I wonder how she determines that. My stats were pretty low for recurrence since my Oncotype was 15 but no node involvement. Based on that my MO was pretty convinced my BCI would tell me no more Tamoxifen. He was partly right. Surprising to him, I came back High risk for recurrence at 7.5% but zero benefit for staying on Tamoxifen. He said I was actually at the low end of high risk so he's strongly recommending I go off. He says the risk of eye problems or blood clots on Tamoxifen is greater than my risk of recurrence off it so as of Jan 31st, I'll give stopping a go. He did also say my daily gym habit would help to reduce my risk to around 4% and if I can shake these 12 Tamoxifen pounds, it will probably go to 1 or 2%, so that's my plan. Anyway, I just figured your good stats would preclude continuation. It'll be interesting to see what happens. (Oh, and by the way, my MO friend who lives in another state says he lets his patients go ahead and get the BCI test done whenever they want so they can use the information in deciding treatment or if they just want to be prepared for that 5 year mark. Cool guy!)
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Does anyone know if the BCI test is covered by insurance?
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Juniper Cat, I think insurance coverage for the BCI is still variable but the likelihood is increasing. I probably won't do it for at least another year or so and I pretty much expect that my less-than-helpful insurer will cover it - but that's just a guess. It never hurts to ask your MO's office to check that out for you. If the answer is 'no' at this point, I'd ask again in 6-8 months.
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Thanks, Hopeful. I’ll most likely also wait until I get closer to the five year mark... I just hope that I’ll still have health insurance or Medicare by then!
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lala1, I think it will be recommended fo me because my ER and PR are 90% strong. My MO won't do the test until closer to the 5 year mark. Maybe I can bug her to do it earlier.
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JuniperCat--My insurance paid for the BCI test and I'm not even at my deductible! In all honesty, it didn't occur to me that they wouldn't. I just did the test and have never gotten a bill.
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JuniperCat - I hear you on the insurance/Medicare concern. I think many of us have ongoing, underlying anxiety about what level of care we'll be able to access in the next 3-10 years.
This bit from a round up from the SABCS might be of interest:
5. Are any other studies presented at SABCS likely to be practice-changing?
I think there were several. There was a paper presented addressing the issue of the duration of aromatase inhibitors, which compared 2 years extra beyond 5 years compared with 5 years and 2 was just as good as 5, so that would suggest that at least for aromatase inhibitors, if they are included in the endocrine adjuvant therapy, that maybe going beyond 7 years is not necessary and you can stop at 7.
You can read the entire conversation at the link below. The relevant piece is question 5 (obviously):
Of course, who knows what current thinking will be by the time some of us reach 5-7 years? I'm not counting on being told 7 years instead of 10 yet but will be watching this with interest.
Best wishes to all for the holidays and new year.
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Hopeful8201, thank you for sharing that article - such great information!
I especially liked the suggestion that acupuncture may be effective for treating joint pain and stiffness. I only have a 6 months left of my 5 years with AI's, but am seriously considering doing 2 more years. The thing is, I have arthritis and the AI doesn't help. I wake up each morning in terrible pain from head to toe. I recently saw a rheumatologist who recommended 1,000 mg. of Tylenol or arthritis strength Tylenol daily, which really helps. He also prescribed Diclofenac topical gel and it worked like a wonder drug on my neck (although he prescribed it for my creaky knee). I also have hip surgery in my near future. UGH!
The worst side effect is the vaginal dryness. One of my docs prescribed DHEA suppositories which has helped tremendously. With all these remedies, I'm hopeful I can make it 2 more years if I decide to do that, although my BCI says I'm low risk and MO says it would not be beneficial.
Another thing to consider is whether or not to continue with the Zometa infusions. I quit after 2 1/2 years and although all my docs are recommending I get back on it, I'm hesitant to do so. I was happy to read about the study in this same article, but will still consult with a endocrinologist because I have osteoporosis.
More good news from the Cancer Therapy Advisor website - pomegranates have anti-cancer properties!
Happy Holidays!
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I'm glad you found it helpful! And yes - isn't it nice to have a compelling excuse to indulge in pomegranates more often?
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lala and Hopeful, thank you for your input... I’ll most likely wait until I’m closer to the five year mark to do the test.... I’m really hoping that I won’t have to continue on anastrozole for another five years... do you know if luminal type has anything to do with the test outcome? Many thanks!
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I would wait until right before the 5 years are up. They will probably change their recommendations five times between now and then.........and/or have come up with a better test.
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I have a few pages to read up on here but I thought I would post my situation. I am thinking I will be on the ten year plan given recent test results.
Shortly after I was dx'ed and in starting the blockers I experienced extremely oily skin, hair loss and facial hair. I blamed the arimidex and thereafter the Femara. Last year a small nodule was found on an adrenal gland and so I just had another MRI for comparison and am awaiting those test results. Hormone tests were also run and cortisol levels and other "fight or flight" hormones were high as well as DHEA. My understanding is the DHEA is transformed into estrogen and while the Endocrinologist stated that because of the facial hair, oily skin and male patterned baldness, she was sure that the blockers were doing their job of keeping the DHEA from changing into estrogen. None the less I wanted my progesterone and estrogen checked. Progesterone was within normal levels, DHEA again was over the standard but my estrogen was very low in the low range. The bad news is that my hormones are still all wacky, the good news is that the Femara is working well. I only share this in that I am wondering why hormone levels are not routinely checked on all females with ER/PR+ BC. I understand that levels fluctuate during the course of a day but clearly routine periodic testing would show average levels thru time. It is beyond me why these tests are not standard. Also if someone is experiencing difficulties while on blockers perhaps decreasing the dosage and then retesting estrogen could be a viable treatment plan instead of discontinuing the drugs all together. I am sure this is not as simple as it seems or this would be standard of care. So what am I missing?
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Hi NotBroken, I agree with you that hormone level tests should be done. I never had a single hormone test done, and I would have liked to have known what they were before starting on Aromatase Inhibitors and then again while on them to understand the impact. It sounds like you are producing higher than normal DHEA, which would explain some of the androgen effects you're describing like oily skin. As long as its not converting to estrogen no worries except for the annoyance of those effects. Maybe looking on the bright side, higher DHEA will help you get through some of the side effects easier.
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My MO said that the hormone test is not routinely run since the levels fluctuate in any given day. Seems to me even if the result is only a window in time it still seems like very relevant information. If levels are high on the blockers could the dosage be increased? If the levels are not being controlled with the meds then why continue to remain on these drugs? Or perhaps a different blocker could be prescribed. If levels are consistently low can the dosage be decreased or discontinued all together?
I have another year til I reach my 5 years. Given these high DHEA results I have made the decision to be on these drugs for 10 years or more. Apparently a simple blood test gave me the information I was looking for. Oh and I asked my MO if I was Lumina A or B as I cannot find anything in my path or the Oncotype report. She said it was not run and she has only seen it done on one patient and she does a great deal of second consults. She said it is a very expensive test and not thought to have any great relevancy. Rather she just goes by tumor grade and oncotype. Personally I would like to know but that is what she relayed to me. I would think the more info the better, especially when making decisions as to an effective treatment plan.
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Hi Otter, I was wondering how you are? I made the decision in 2015 to skip chemo after being advised toward it by 3 oncologists. That decision was more difficult for me than deciding to have them take my right breast.
Have you seen the Tailorx study publishing this week?
It seems like it's great news, but also as if they moved the scale.
2.1cm, grade/stage 2, er+ clear sentinel node, onco score 28, Mammaprint also recommended chemo. I was diagnosed at 44, no children.
I saw a post you had written about your decision and it made me want to share some of my story.
I've been taking exemestane since my 1st surgery.
I hope everyone here is doing their best to take care of themselves and each other.
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Welcome, GardenFreak! Thank you so much for sharing your story. This is an older thread, so we're not sure if you'll get much response from the original posters. But please feel free to start a thread of your own, or join in any other conversations you find to be a good fit!
The Mods
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Thank you, will do! I've learned a lot from this site the past few years.
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