How Many are doing 10 years on Aromatase Inhibitors
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bumping for someone trying to figure out what to do next....
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I just finished 5 years of Aromasin and my Dr. said that I should look into Tamoxifen for another 5. I have really bad hot flashes for the past 5 and I am really confused if this is the next step.. He left it up to me, I am confused and trying to weigh this out. Stage 2 no nodes
Thank you
Mari
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I just saw my oncologist this week to discuss that question. I did 3 years of tamoxifen and 2 years of anastrozole. 100% ER postive. She said there is no evidence that extended the anti-hormonal treatment beyond the 5 years will give me any benefit and I am ready to be off it. But there are a lot of individual factors that might go into making this decision -- age, menopausal status. One of the factors she considered in the mix was that I was premenopausal at diagonsis and got the effect of ovarian ablation from chemo. That in itself is an anti-hormonal treatment. I'm done and oh so happy to be done. However, I did agree to reevaluate if there is new data in a year.
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I finished my 5 years of Femara August 2012. Because I didn't like the idea of not being on anything my onc and I decided I would go on Tamoxifen for 5 more years. Also, because of severe vaginal dryness, this allows me to use Vagifem with the thought that the Tamoxifen would block any estrogen that might get into my system.
Since starting Tamoxifen almost all of my joint pain has gone away. No more painful feet in the morning. Yay!!!!!!!!!
I have been having a lot of sweaty days/nights this summer. I am not sure if it is the Tamoxifen or if it is the unusually hot and humid weather we have had here in Seattle this year. Any other Seattle ladies have this problem?
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My Onc and my cousins Onc boths said now we'll have to do 10 years. She had just hit 5 and was upset. I am at the one year mark and taking this for another 9 seems rough. I feel like I've already aged 15 years in the past 1.5 years, though I am still quite active. To tell you the truth, I always wondered how one could EVER stop taking an aromatase inhibitor. Every cell in your body is supposed to be able to produce small amouns of Estrogen (male or female) so how could they ever tell us to stop taking the drug that helps prevent that? Maybe I know too much of the science part, but I don't think I can ever stop taking it until they find some other way to battle Estrogen related cancer. On the other hand, if my joints are this sore after one year, I don't really want to think about the fatigue and pain in 10 more years. I probably shouldn't come on this site when I am feeling down... and sore, and tired. But, on the bright side, I AM going dancing tonight... if it kills me. We as survivors just keep putting on the happy face and keep on trucking. I do wish it was safe to try a "vacation" from Femara for a few months. Just to feel young again, for a little while. But then, I guess I wouldn't go back on. ARGGGHHHH. The mental battles we fight.
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Thanks so much for this discussion. I head to my MO at the end of the week. As I approach the 5 year mark, I am starting to make plans for the future. How often will I see her and what tests will I have --right now I go twice a year and get an MRI at one visit and a mammogram at the next.
The more critical discussion will be about femara. I started in June of 2009 and really want to go off in June of 2014. While I have managed the side effects with exercise, I really hate the 'fuzzy head" I have and the vaginal dryness.... I just want my body to have rest. I had a "middle of the road" bc--- gray area all around--- grade 2, stage 2, slow growing oncotype in mid-20's..... so for me, there will have to be a very convincing argument, after chemo and radiation, lupron and femara to stay on this drug...... In our last visit, she said there was no convincing research---
I will admit, I do feel "safer" on it, but I know it is not a guarantee... what do we do if those of us who go off it find out in 2 years that there is research that supports the idea of 10 years??? Would we be able to get back on?
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Yes, I believe that we could.
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I wonder if going on it after some time off enables the cancer cells to evolve and become more immune. Just thinking...I don't have any knowledge about it at all.
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IMO the thing researchers need to figure out more than anything is: have the treatments worked? If they have, and we are cancer free, then we are subjecting ourselves to medical interventions with very serious potential SEs for no reason. That is what drives me the most crazy about the whole deal!!! (I thought this when I was doing chemo too.)
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In recent news, there is the genetic tests screening for recurrence to identify those patients who should stay on Tamox or AI for longer time period. http://community.breastcancer.org/forum/73/topic/810852 I wonder if we can inquire to have thme done - are they available to patients?
I never had Oncotype testing done as when dx in 2006 - only allowed for node negative patients. I'm wondering if I can inquire to get it done or is it worth it if my Ki67 score was 20? Already borderline high and one positive sentinel node. How can we make informed decisions without adequate information? Likewise, how can our doctors make these decisions as well???
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Bingo. Right now doctors are just plain guessing on Als for 10 years, or not, recommendations. And whether we decide to take them or not, we are just plain guessing too.
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cp418, I looked at that study when you first posted it. It sounds like a step in the right direction, but it looked like the only genetic test that might predict long-term recurrence was something called the breast cancer index (BCI), not the oncotype. I don't know anything about this test...is it available to the public or only in the research setting? Could they retroactively test old tumor slices (as far as I know mine would still be residing in a lab at Mayo Clinic....or do they dispose of them at some point?). Many unknowns......
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Ruth,you are so kind!!
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What is too funny is that I donated my tumor to breast cancer genetic research. However, they made me sign release forms that I would have no future access to the information.
At the time, I figured what good was it being shelved at the local hospital if it could benefit research. I wonder if there is any left - - it's not like we all take it home pickled in a jar to sit in our closet like a token from our surgery......0 -
I found this article, maybe it is the same one.....published earlier this month (I'm bolding the parts I find most important):
"Standard treatment for early stage ER positive breast cancer includes fives years of treatment with either tamoxifen or an aromatase inhibitor that blocks the action of estrogen. The approach is sufficient in most patients, but some continue to experience recurrences in later years. The authors of the study noted that knowing whether or not a patient continues to be at risk is essential for determining if prolonged treatment is necessary.
The study, led by Sgroi, MD, of the MGH Cancer Center and Department of Pathology, was designed to compare the ability of the BCI in predicting long term recurrence risk with two other gene expression signatures that can predict risk within the first five years, the Oncotype Dx and the ICH4. All three methods were primarily used to analyze tumor samples from more than 650 study participants in a clinical trial comparing tamoxifen and anastrozole. Results were compared with patient records to determine individual rates of recurrence for up to 10 years after first surgical treatment.
All three methods could accurately predict recurrence during the first five years, but only the BCI was able to assess long term risk. The BCI was able to clearly distinguish 60 percent of patients whose risk was low from 40 percent who were at a significantly higher long term risk.
“We know that more than half the instances of recurrence in ER-positive breast cancer occur after five years of therapy with tamoxifen or anastrozole, so these findings are highly relevant to clinical management,” says Sgroi. “Since the BCI identifies two distinct risk groups, it may provide a much-needed tool in determining those patients who need extended hormonal therapy and those who may be spared its well-known adverse side effects.”
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I also went on the BCI webpage and doctor's CAN order this test....whether they can order it on a 5 year old tumor sample (if it is still around), that I don't know.
Geez, I should I kept a sample in the fridge.... right behind DH's carton of fishing bait!
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I was hoping the genetic BCI testing could be done on a blood sample............... ruthbru - LOL! I would have stored it in the freezer too had I'd known!
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While considering testing, consider this (which I have described in other threads, but it may provide some food for thought here as well -- I apologize for the repetition and the extended info on my dx, which is limited in the autosignature):
In 2002 I was dx'd with IDC 1.6 cm ER+ PR+ HER2+++ and some DCIS, and at dx and after completion of CAFx6 and rads I had very dense breasts by mammogram. I never had trastuzumab. After 3 months of tamoxifen the density had entirely disappeared.
IMHO, density may be one way to help with your decision about long-term use of medication. The Karolinska Institute studies show that breast density may be an indicator of whether a drug like tamoxifen has worked for you early on, like I suspect it did for me. Google Karolinska and breast density.
As a HER2+++ early stage node-negative patient I was worried about taking tamoxifen because studies indicated that somewhere between 1/4 and 1/3 of HER2+++ patients do worse on that drug. I chose to discontinue it after only 1 3/4 years, and opted not to do any AI subsequently. I suspect the tamoxifen worked well for me as a highly positive ER/PR patient, within the first 3 months of treatment. I am doing fine at over a dozen years out from dx, and am glad to have "missed out" on unnecessary treatment, although of course it is very individual.
Last year my bone density results were off the chart excellent per the study interpretation. My annual mammo is clear, and my alternate 6-month MRI this past week was clear.
AlaskaAngel
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The name of the company that produces the BCI test is 'bioTheranostics', and they need a specimen, 'a minimum of 300-500 viable tumor cells are required for testing'.......
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Sgroi presented his BCI research at last December's San Antonio Breast Cancer meeting.
With respect to "viable" cancer cells... I'm curious to know if paraffin waxed specimens are viable? I know my paraffin slides were sent back to the pathology lab after my surgery and I assume it needs to be saved for a number of years because it is considered patient records. I do know from working with the folks at Sloan Kettering's rare breast cancer pathology lab, they desire fresh flash frozen specimens because that is the least likely way for specimens to degrade over time. For genetic testing, fresh flash frozen is the best. So I'm not sure our specimens, even if located are "viable" for Sgroi's genetic test....0 -
Is anybody seeing their oncologist in the near future? I would be interested in their take. My next appointment isn't until April. This is a test they should be ordering for anyone just going into treatment, anyway!
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As many of us have experienced, a tumour can have different components of dcis and idc etc. So how definitive can these results be?
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Another good question....
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I wonder how many years it will be before we can have definitive answers. It is such a complex disease.
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I see my oncologist in November and will inquire. When I previously asked about possibility of a vaccine being available for recurrence prevention - he said unlikely in next 5 years.... Come April I will be at 7 years on Femara and although I have bad days given my dx it has helped me. I believe my breast cancer is Lumina B which is more aggressive than Lumina A and is my understanding this type usually recurrs early on. So I feel I still have a long road ahead trying to keep this beast under control....
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I will ask about Sgori's work at my next check up in less than a month... Starting to look past Pink October...and excitedly looking forward to December's annual San Antonio Breast Cancer Symposium....
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Again, so glad that this discussion is continuing....
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I am going to follow up with the BCI test with my BC surgeon, who I see in early November. I go to MGH and since the study they refer to was done at MGH I would HOPE my doctors would have some good information aboit it.
How many of you had your MO's actually tell you whether you have Luminal A or B? I had to ask. She ask me what my PR level was (%70) and she said A. However, I was multi focal, extensive LVI and had a postive node so I thought I was B. It is such an easier concept for me to understand than breast cancer staging. I think we should all have that information given to us.
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I am leaving to go see my oncologist right now and compiling my list of questions. Since I am newly surgical menopausal..I have a few new ones. I will definitely ask about the BCI test and if they are at least doing it on new patients.
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Lenn13ka - Here is the molecular subtype info from a reference on BCO, I don't believe that LVI or nodal status affects your classification:
The study confirmed that there are four main subtypes of breast cancer:
- luminal A, which is hormone-receptor-positive (either estrogen- and/or progesterone-positive) and HER2-negative
- luminal B, which is hormone-receptor-positive (either estrogen- and/or progesterone-positive) and HER2-positive
- basal-like, which is hormone-receptor-negative and HER2-negative (also called triple-negative breast cancer); the researchers found that basal-like breast cancer is much different from the other three types of breast cancer and more closely resembles ovarian cancer and a type of lung cancer
- HER2-enriched, which is hormone-receptor-negative and HER2-positive
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