<1 cm - Stage 1a - Team

mepic · May 2013

I can only say that is what her response was and she did say the reocurrence risk would be higher than 9% but she couldn't say by how much which actually falls in probably to the range you gave Voraciousreader, of between 11% to 18% As the Oncotype dx test is fairly new I do believe they will fine tune it in the next few years to include a variation in scoring for extent of vascular invasion instead of just lumping everyone with vascular invasion as the same. I will read the link for the study on mets and Tamoxifen. The last time someone posted a link saying it did prevent distant mets I read it and found in two locations on that study that it really didn't. I will admit I do not have rose-colored glasses on with Tamoxifen and I have a very good reason for that. I am highly sensitive to all meds, am allergic to alcohol, have very low blood pressure, tend to run anemic, can't even take Benadryl and fainted and then threw up from the pain meds after bmx. I don't metabolyze meds well at all, I know this about my body, so the thought of taking something for five years like Tamoxifen scares the heck out of me. So I have spent hours researching it and I know there are many women who don't have problems on it. Unfortunately on the inernet you will find more women who posted that do have problems with it which makes someone like me, who is prone to having side effects from all medicines, step back and say hmmmm. For me, taking it can be seriously life-changing and potentially fatal, so I have a good reason to question the risk versus the benefit. If my cancer had been found later I would be doing the recommended chemo and everything else. But for a stage 1 low grade cancer with bmx, I've got to do a thorough assessment of risk versus benefit. I will be asking my oncologist about alternatives to Tamoxifen given I already have lower estrogen levels than I realized. Stay well all.

voraciousreader · May 2013

Mepic...Could you please provide the link where you read in two places that Tamoxifen didn't really prevent mets. I do not look through rose colored lenses when I read clinical trials. I can appreciate how you feel about taking a medication for a long period of time especially in light of your sensitivites. The DH has a rare metabolic disorder. His body is also very sensitive. I often joke, and I know it's not funny, ....that all he needs to do is look at a medication's bottle and he gets a reaction.

But make NO mistake about it, Tamoxifen DOES prevent metastasis. And for patients who DO have metastastic cancer, there are many patients taking it to keep the cancer from progressing. Tamoxifen is a VERY powerful drug in cancer treatment.

Regarding further validation of the OncotypeDX test with respect to vascular invasion...this is news to me. Could you please provide a link to details of Genomic Health's future plans to fine tune the test? With the newly published results of the Atlas trial with respect to taking Tamoxifen for 10 years vs 5 years, I would hope that Genomic Health would somehow fine tune their equations because the current OncotypeDX test is based on taking Tamoxifen for 5 years, which at the time the info was gathered, was the Standard of Care. However, I have not seen ANY response from Genomic Health since the landmark study was published online in December of 2012. So if you would like to share any published information that mentions that Genomic Health is fine tuning ANY of it's data with respect to breast cancer, I would love to read more about it.

Now, regarding your trepidation of "one size fits all" with regard to the data and how you question the validity of the OncotypeDX scores with respect to vascular invasion, I understand your concern. I also understand that you would really like to pinpoint EXACTLY your risk of future metastatic disease if you DECLINE endocrine therapy. Often on this discussion board this question is asked. Keep in mind the difference between relative risk and absolute risk. These are very important points to remember when reading studies. While published studies tout that Tamoxifen will reduce your chances of distant recurrence by almost 50%....that 50% is the relative risk of reduction. However, a person really needs to know their ABSOLUTE risk of reduction. That number is usually a figure that is much lower. And that is what you are questioning. And to answer that question, since we both have the same recurrence score of 15, I will tell you that NO ONE will be able to tell you EXACTLY what your absolute chances of recurrence are if you DO NOT take Tamoxifen. On this discussion board, we've had sisters here with lower scores recur. Likewise, I've seen sisters here have tumors that were graded more aggressive but with lower recurrence scores. What I have learned from reading these studies is that there is no rhyme or reason to the madness of this illness. And when you take into consideration those patients who have intermediate OncotypeDX scores and need to wait for the results of the TAILORX trial before they know conclusively if adding chemotherapy to Tamoxifen is beneficial, you then realize as much as we know about cancer, we still want to know even more! I guess that's why the person you spoke to at Genomic Health couldn't pinpoint for you your "true" risk of recurrence.

But I will tell you what I DO know from reading studies and our score of 15. Cancer researchers usually classify low risk of recurrence at approximately 10% or less. With a score of 15 we are at low risk of distant recurrence based on taking Tamoxifen. If we choose not to take Tamoxifen, we are then at a moderate risk of distant recurrence. Keep in mind regardless of your risk of recurrence percentage, once you have had a breast cancer diagnosis, there is ALWAYS a risk of distant recurrence despite what you may or may not do....

mepic · May 2013

Thank you for that information Voraciousreader. It was only IMHO that in the future, when more is known about vascular invasion, that I think they will take into account the degree of invasion as the woman told me on the phone they do not do that now, as that study concluded it does make a difference. Maybe the reason I haven't found studies on my own is I have been specifically looking for mets but the studies just use the word breast cancer "recurrence" which could include local recurrence and distant mets? (I just had a lightbulb moment!). But I will look for the study I read before...it was really long. Voraciousreader you seem very knowledgeable and so may I ask, if you were in my shoes, with the high sensitivity, 29 year old aunt who died of uterine cancer, focally present vascular invasion (tiny), and already low end of estrogen would you take Tamoxifen? I am losing weight, will return to exercising, am avoiding sugar, eating more veggies and fruits and staying away from preservatives and white foods as much as possible. Oh and I am already taking DIM and iodine (I have Hashimotos Thyroiditis). I am not asking you to be a fortune teller, just for your opinion on what you would do. This is all so overwhelming I don't even know if there are alternatives. Meds scare me more than surgery ever did

voraciousreader · May 2013

Mepic....there is a huge difference between local recurrence and distant recurrence. Distant recurrence is mets. Also be aware of studies that discuss disease free survival and overall mortality. Look up the meanings of those terms. They will help you understand what is being measured. The OncotypeDX score gives you two pieces of info. Whether chemo's benefits will outweigh your risks and your chance of metastasis within 10 years. Again, your score assumes you are taking Tamoxifen. I cannot tell you what I would do if iwere in your shoes. I exercise and am NOT overweight, eat properly and still got cancer. Don't think there would be much more that I could do to lower my risk without taking Tamoxifen. Now regarding your family history of uterine cancer...if you decide to try Tamoxifen, I would recommend that you get a baseline transvaginal ultrasound. I had gyno issues before I began my journey and continue to have issues...my gyno and MO work very closely together. I would think your doctors would do the same.

I wish you well with your decision. And remember one thing...nothing is written in stone with respect to your treatment plan. I think you can revisit your decisions whenever you want to. I recommend finding an MO whose opinion you respect and then together decide!

mepic · May 2013

Thank you sincerely Voraciousreader. So many of us learn from people like you who researched, and more importantly understood what you researched, and explained it in easier to understand terms on these boards for people like me who are still having a hard time reading the signs whizzing by on this speeding train I never expected to be on. I still can't believe less than 3 months ago I had no idea I had breast cancer. If it weren't for the tissue expanders and my new Chesty LaRue looking chest I swear I would think it was a bad dream.

violet_1 · May 2013

I'm just catching back up on this thread...SIGH. I have not had the Onco score...I think my oncologist breast surgeon said it wasn't necessary in my case. He DID take my final pathology to the Tumor Board...my understanding that Tami wouldn't be of much benefit vs. the risks...

I think I've just had so much info...I forget what-the-hell I was told sometimes...;)I LOVE my breast surgeon--he's easy to talk to and gave me his cell # to call anytime...:) I just REALLY don't WANT to take Tamoxifen unless absolutely warranted(/SE's & risks)...which it doesn't appear to be. TONS of reasons for that...I can expand more on that later--it's very late & I should be in bed!!!

Regardless, I have an appoint. with another Breast Oncologist May 20th to get a second opinion... I also really believe BC patients can NEVER be certain that they are "cancer free"...NED just means they don't have any evidence presently of cancer. I KNOW my Bilateral MX doesn't make me 100 % cancer-free. AND, from my understanding, I'm in double-trouble because they found I had BILATERAL BREAST CANCER @ at the MX-- they found same on my L side....twice the fun & twice possible for recurrance, right? Yee-Haw! It Sucks.

AND, I'm not sure WHY, but I feel in my gut, it's going to come back, and I'm not one to normally feel the worst is gonna happen--at all. BUT, I had the strongest gut feeling before my MX that they would indeed find BC on my other super-dense breast even though it never showed up on ANY imaging...and it DID. So. There-you-go.

However, I feel it's probably going to come back regardless if I take Tamoxifen or not. I'm not sure HOW to explain how I feel. It's not a defeatist attitude. I've been strong & at great peace through this whole ordeal & I have a really strong Faith in God/supportive family/friends/great medical care...and ironically, I'm at a really happy time in my life (going through divorce from 25+ yr. marriage, but met a wonderful man 1 year ago who has been super supportive through ALL of my cancer ordeal .) I just feel like it's coming back...some how/some way and it's not uncommon for it to recur. I don't mean that as a downer for anyone else...I'm just being honest about how I feel for me. YET. I feel at peace with whatever is going to be. And, I want to do what I can within reason, that which might help me (hence, the BMX)...if the rewards outweigh the potential side effects...

Hope this makes sense tomorrow...it's past 2:00 a.m. I'd welcome any comments from others--especially on how YOU feel about YOUR cancer situation...

Blessings--I've learned soooo much from you ALL!!!

voraciousreader · May 2013

Violet....I don't think it is uncommon to believe that at some point we may recur. As you stated, unlike other cancers, breast cancer can recur down the road. However, and this is a huge "however," patients like yourself who are Stage 1 Grade 1, especially with the smallest of small tumors have the BEST prognostics of all invasive breast cancer diagnoses. When dark thoughts of late recurrence creep through my mind, I try to remind myself of what one of my blessed physicians said to me when I was diagnosed. You'll find his quote below along with my stats!

The bottom line for MOST patients presented with "favorable" prognostics is that you will eventually die from something else. For some, breast cancer is deadly. But what's lost in the Pink Ribbon campaign is that it is more likely for us to die from something else. Heart disease claims way more lives. Obesity. Hypertension. Diabetes. Car accidents. And not to really sound too macabre and like a real psycho Debbie Downer, pregnancy also kills....but who stops to think about having a baby? Regarding pregnancy "killing"....I'm not referring to maternal illnesses during pregnancy which can also lead to death. I'm referring to the little known fact that a woman is most vulnerable to being murdered WHILE SHE IS PREGNANT...by the hands of the man who helped impregnate her! I could go on and on and on about all the things other than breast cancer that can kill you that could mentally paralysize one from physicially walking out of the house! OR, YOU CAN CHOOSE TO BELIEVE THAT YOUR BREAST CANCER DIAGNOSIS IS A BUMP ON THE PATH ON YOUR JOURNEY TO A LONG LIFE.

voraciousreader · May 2013

This was in my inbox this morning from the Lancet:

The Lancet, Early Online Publication, 30 April 2013

doi:10.1016/S0140-6736(13)60140-3

Cite or Link Using DOI

This article can be found in the following collections: Oncology (Breast cancer)

Selective oestrogen receptor modulators in prevention of breast cancer: an updated meta-analysis of individual participant data

Original Text

Prof Jack Cuzick PhD a

, Ivana Sestak PhD a, Bernardo Bonanni MD b, Joseph P Costantino DrPH c, Steve Cummings MD d, Prof Andrea DeCensi MD e, Prof Mitch Dowsett PhD f, Prof John F Forbes MD g, Leslie Ford MD h, Prof Andrea Z LaCroix PhD i, John Mershon MD j, Bruce H Mitlak MD k, Prof Trevor Powles MD l, Prof Umberto Veronesi MD m, Prof Victor Vogel MD n, D Lawrence Wickerham MD o, for the SERM Chemoprevention of Breast Cancer Overview Group†

Summary

Background

Tamoxifen and raloxifene reduce the risk of breast cancer in women at elevated risk of disease, but the duration of the effect is unknown. We assessed the effectiveness of selective oestrogen receptor modulators (SERMs) on breast cancer incidence.

Methods

We did a meta-analysis with individual participant data from nine prevention trials comparing four selective oestrogen receptor modulators (SERMs; tamoxifen, raloxifene, arzoxifene, and lasofoxifene) with placebo, or in one study with tamoxifen. Our primary endpoint was incidence of all breast cancer (including ductal carcinoma in situ) during a 10 year follow-up period. Analysis was by intention to treat.

Results

We analysed data for 83 399 women with 306 617 women-years of follow-up. Median follow-up was 65 months (IQR 54—93). Overall, we noted a 38% reduction (hazard ratio [HR] 0·62, 95% CI 0·56—0·69) in breast cancer incidence, and 42 women would need to be treated to prevent one breast cancer event in the first 10 years of follow-up. The reduction was larger in the first 5 years of follow-up than in years 5—10 (42%, HR 0·58, 0·51—0·66; p<0·0001 vs 25%, 0·75, 0·61—0·93; p=0·007), but we noted no heterogeneity between time periods. Thromboembolic events were significantly increased with all SERMs (odds ratio 1·73, 95% CI 1·47—2·05; p<0·0001). We recorded a significant reduction of 34% in vertebral fractures (0·66, 0·59—0·73), but only a small effect for non-vertebral fractures (0·93, 0·87—0·99).

Interpretation

For all SERMs, incidence of invasive oestrogen (ER)-positive breast cancer was reduced both during treatment and for at least 5 years after completion. Similar to other preventive interventions, careful consideration of risks and benefits is needed to identify women who are most likely to benefit from these drugs.

Funding

Cancer Research UK.

Annette47 · May 2013

Been reading with interest the last couple posts from Violet and Voraciousreader about being worried about recurrance. For the most part, I'm not - I'm pretty confident this particular cancer is done and gone. What worries me more is the possibility of a second primary - after all, whatever processes were in place that allowed this to happen are likely to still be there for quite some time to come (I'm 45 and pre-menopausal - my mother didn't hit menopause until 55, and she was diagnosed at 75). I'm not worried to the point of paralysis, but enough to take Tamoxifen in hopes of lessening the risk. Been on it a little over a month and so far, so good.

I wonder if that fear ever goes away entirely, or if it wil be lingering in the back of my mind for the rest of my life ...

bluepearl · May 2013

I had a 1 cm low grade tumor in left breast and declined tamoxifen. Two years later, 7mm grade 2 tumor in contralateral breast. Tamoxifen may have prevented or at least slowed this second tumor.

mepic · May 2013

I had promised to find that long stud(ies) article I had readI also wanted to print it out to take with me to the oncologist next week. The title is "Minimizing early relapse and maximizing treatment outcomes in hormone-sensitive postmenopausal breast cancer: efficacy review of AI trials"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2962795/

Super long but I copied and pasted the end discussion and conclusion part which sums it up:

Discussion:

While the risk of recurrence may be greater for patients with N+ status, all patients with EBC are at risk for recurrence, including those with N− tumors of high grade or large size [4, 19]. Prognostic factors such as high Ki67 expression may also identify a subgroup of patients (including those with N− disease) at high risk for relapse and poor outcome [20]. Preventing DM is critical to improving outcomes; they represent the majority of EBC recurrence events, which peak approximately 2 years after surgery [4], and are associated with the poorest prognosis compared with locoregional and contralateral recurrences [5, 8, 10]. Therapies that effectively reduce the risk of early DM are, therefore, likely to improve long-term outcomes, including OS.

Major clinical trials clearly demonstrate a benefit of AI therapy over tamoxifen in multiple adjuvant treatment settings. In the initial adjuvant setting, both anastrozole and letrozole have proven superior to tamoxifen in improving DFS, whereas results for exemestane in this setting remain inconclusive. In addition, initial adjuvant letrozole has been shown to significantly reduce early DM [6, 11]. This was also shown with anastrozole, but to a significantly lesser extent [3, 48]. The significant reduction in the incidence of early DM may in part explain the emergent OS benefit with letrozole over tamoxifen with long-term follow-up [16, 49], whereas no improvement in survival has been seen for anastrozole over tamoxifen with long-term follow-up [15]. Letrozole appears to be more potent than anastrozole in terms of inhibiting estrogen [37, 69]. However, whether this results in differences in clinical efficacy, remains to be determined in the directly comparative FACE trial.

Adjuvant AI trials including the IES, ABCSG 8, and ARNO 95 show that switching to an AI (anastrozole or exemestane) after 2 to 3 years of tamoxifen is better than continuing tamoxifen. However, it is not possible to compare results from these switch trials with upfront trials, because the switch trials included only patients who were disease-free at the time of randomization. Recently reported results from the STA of BIG 1-98 further suggest that using a sequence of tamoxifen and letrozole, in either order, is not superior to using letrozole monotherapy upfront [16], which has already been shown to be better than tamoxifen monotherapy. Exemestane was not shown to be better than sequential therapy with tamoxifen and exemestane, but exemestane also was not shown to be better than tamoxifen in the upfront setting during the first 2.75 crucial years of treatment [40]. Lastly, extended adjuvant trials have demonstrated that continuing adjuvant endocrine therapy with an AI improves outcomes when compared with no further treatment in patients who have received the full course of prior tamoxifen, although this benefit has been conclusively shown only with letrozole.

Conclusions:

Recent clinical trials have demonstrated the superiority of initial treatment with AIs instead of tamoxifen, with letrozole providing the most reduction in DM (30%) and having the greatest impact on reducing the risk of early DM [6, 11]. As reported by the updated analyses of BIG 1-98, this is translating into an OS benefit with longer follow-up [16, 49, 51]. A statistically significant effect of anastrozole on reducing DM was observed only after a longer follow-up (i.e., after 100 months), well beyond the crucial period during which patients are at the highest risk of DM [15]. The STA of BIG 1-98 has shown that sequential therapy with tamoxifen and letrozole, in either order, is not superior to initial adjuvant letrozole [16], and recently published St. Gallen guidelines seem to recommend the use of an AI upfront, particularly in patients at higher risk of early relapse [17]. However, for patients unable to begin adjuvant endocrine therapy with an AI, switch and extended adjuvant trials demonstrate that at the least, adding an AI at some point after tamoxifen can help reduce the risk of recurrence and improve outcome. While efforts to stratify patients into prognostic subgroups are ongoing, it remains difficult to quantify the risk of recurrence for an individual patient. Until risk assessment strategies are more conclusively validated in clinical trials, all patients should be considered candidates for upfront AI treatment to effectively minimize early DM and improve survival. [end]

On a lighter note I flipped a penny this morning and said if it lands on heads I take Tamoxifen, tails I don't. Guess which side it landed on. Yup....tails. Going to read up on that letrozole.

mepic · May 2013

I called to ask if I could get my Ki67 expression results but apparently they don't release that, not even if your doctor were to call and ask for it. I also got a different answer as to the vascular invasion. This person said they don't really look at that - that they look at the gene expressions. I must say the customer service reps where they do the Oncotype dx testing are super nice. So nice I'm not even upset I got two different responses. I feel the same as Annette47, I just don't feel a strong fear that I will get distant mets. I know local reocurrence is possible but I don't fear that at all because the probability is so low as I had a BMX and small, low grade tumor. I realize all my fear is about taking Tamoxifen-and unlike cancer where I had no choice, I do have a choice what meds I take. It's all a gamble anyway...I'm just going to curl up in God's palm and let Him take care of it. Be well all.

violet_1 · May 2013

Mepic: I hear ya! I just posted about Tamoxifen on the other Pre-menopausal Early BC thread . Wish we could combine the threads...lol! Take care.

grammietofour · May 2013

Violet,

I am in a similar situation. I had a stage 1 3 mm ILC, negative nodes, BMX. My recurrence rate is supposedly less than 5%. I am so leery about taking the tamoxifen due to the side effects of that and potential risk of stroke, DVT, pulmonary embolism, endometrial cancer. The rates of getting one of those seems to be higher than my recurence rate of the breast cancer. So at this point, I am opting out of Tamoxifen. I would be constantly be worrying (I am a worrier) about having a DVT or something else happening versus worrying about a cancer recurrence, so I am thinking I will worry about the cancer recurrence and feel good off of tamoxifen than be on the tamoxifen, worry about those risks and potentially feel crappy for five years! Hope that makes sense.

smo23915 · May 2013

Hi Grammietofour,

I agree we are very similiar in our profile. Mine was 2mm ILC. I was told the recurrence rate distant is less than 5% and "miniscule". I had BMX so that is 1% and was told the real benefit of Tamoxifen would be for the breast recurrence. So how much does Tamoxifen help us, very little.

I don't know what the ON told you but many of my 2nd opinions told me it is up to me.

Sharon

grammietofour · May 2013

My oncologist said it was entirely up to me. He felt that in "our" group, the potential risks of the tamoxifen (understanding there are risks even with taking baby aspirin!) coupled with usual side effects potentially, may outweigh any benefit obtained. His discussion involved the fact that with every six month followup, if there happened to be a recurrence in the remaining tissue after mastectomy, that it would be found early and dealt with. I am of course second guessing everything that I do. If I opted to take the tamoxifen, I would be second guessing that too! So, it is a no win situation. Did you say you were going to MD Anderson for an opinion? My father actually lives in Houston and I am going to talk to MD Anderson on the phone and get their take on it. I really know my decision but just want someone to says I am definitely making the right decision which of course nobody will! Only recommendations - hate those. Laura

violet_1 · May 2013

grammie & smo: You aren't alone in how you feel...;) And, yes, we will be getting 6 month check ups...

At this point, I'm more concerned about taking a hormone drug for 5+ years & it's effects & Quality of Life fall out, than the BC recurrance coming back.

smo23915 · May 2013

Oh my gosh-yes! that is why I had 9 second opinions. (not kidding, thank goodness I have good insurance) I wanted someone to say, no don't take it but of course no one would!

Yes, I went to MD Anderson for a second opinion and the ON- a female very nice told me: my prognosis is excellent, I have a low risk tumor and am in the best prognostic group for having breast cancer. She said I could try it and just stop if I have SE. John Hopkings told me try it and if I have "any" SE even little just stop it. I have started taking it and so far the only side effect has been: head aches, insomnia, and dry skin but I told myself I will stick with it for a coupld months and see what happens.

When I saw one of the ON here in Michigan and I told him about the insomnia and he looked at me and said, "just stop it." No discussion he was ok with it. I have a friend who has a bigger tumor, node involvement (7) and HER 2 positive and they told her no discussion she "must" take it.

So, in a way I feel good knowing we have a choice and they told me it will also help my bones & I have low bone density.

Were you able to get the onco test? I am still trying to get an ON to order the test they keep telling me it is to small.

I am going to the Block Center in Chicago this month. I am wondering what they will say about using Tam. I will let you know what they say.

Sharon

grammietofour · May 2013

I did not get the onco test. My onc did not say that it could not be done, but he felt with the size of my tumor (3 mm), that it was very unlikely to have a distant recurrence and that is what the oncotype is a predictor for. Of course, we all know anything is possible. I mean, I never in my wildest dreams expected to ever have breast cancer. If someone had told me six months ago, I would be sitting here without any hooters, I would have laughed myself sick! I am going to touch base with MD Anderson, only because it is in my dad's backyard and I feel like I should take advantage of that for peace of mind (yeah right) and then go from there. What is this Block Center you are talking about? Laura

smo23915 · May 2013

So funny!! w/o hooters. My grand daughter (she is 7) told me, I look like her and not to worry they will grow back because hers are starting to grow. I explained how they will not grow back. She said, oh well we can buy some socks to put in your bra! I wear a bra but am not big on wearing the inserts. My surgery was in February and one side is still sore.

The Block Center is one of the leading centers for Integrative Cancer Treatment. I was not sure about it but I posted on here about it, and a couple people and the moderators told me, not to worry that yes it is a good center. So, I will find out and post about it. I will spend the whole day there and will see an ON, Internist, Nutritionist, attend cooking classes and a Body Mind Session. The only thing is they take tons of blood work and are big on supplements. But I don't have to take all the supplements. And if I learn a little more it is always good.

Sharon

ps..the first ON I saw told me: The little tumor I have will not threaten my life if I live to be 100 and he said the recurrence rate (distant) is less than or equal 1-2%. But like all of us I worry and sometimes have a hard time with it.

Sharon

Block Center for Integrative Cancer Treatment

grammietofour · May 2013

You and I must be soul sisters - I too had my surgery in February and have a granddaughter that turned 7 last week!

voraciousreader · May 2013

mepic...I'm very confused. Are you pre or post menopausal? The Standard of Care according to the NCCN breast cancer treatment guidelines is for premenopausal women to begin using Tamoxifen and postmenopausal women usually begin with an aromatase inhibitor (AI). The study that you site, appears in detail in the 2013 NCCN breast cancer treatment guidelines (professional version...NOT PATIENT version) beginning on Page 97 under the heading Adjuvant Endocrine Therapy. You can register at the NCCN website and read the details. Basically what the studies tell us is that if you are diagnosed while you are premenopausal, the Standard of Care is 5 years of Tamoxifen, that is unless you become postmenopausal at some point and then you can take an AI. That ASSUMES that you have a tumor that is larger than .5 cm. As I said earlier, if your tumor is smaller than .5 cm, then the NCCN guidelines tells us that you should "consider" taking endocrine therapy.

If you begin your journey and are already postmenopausal, then the NCCN guidelines recommend 5 years of an AI...OR begin with two to three years of Tamoxifen and follow it with two to three years of an AI.

With the newly released Atlas study based on premenopausal patients, the study concluded that premenopausal women could now have a CHOICE of taking Tamoxifen for 10 years. This study has NOT yet been incorporated into the NCCN guidelines. However, this was welcoming news to premenopausal women who had aggressive ER positive tumors. It gives patients AN OPTION to CONTINUE THERAPY.

Now regarding the study that you posted, which goes into greater detail in the NCCN guidelines, there are STILL ONGOING TRIALS to see if patients should be in AI's longer. There's also ongoing trials of 5 years of Tamoxifen followed by 5 years of an AI AND there are all kinds of trials with all kinds of sequencing combinations of Tamoxifen and AIs. None of the trials, EXCEPT the ATLAS trial have been disclosed. Perhaps at the next San Antonio Breast Cancer Symposium held in December will give us more information.

Now regarding vascular invasion and Genomics Health....I hope you now have a better understanding about how the recurrence score is determined. Now I know Genomics Health is doing a study on node positive patients and the OncotypeDX score, but I never heard of anything with respect to vascular invasion. The OncotypeDX test is a genetic marker test. And while the KI-67 score is factored into the test, Genomics Health DOES NOT BREAK OUT THAT SCORE. There has been a lot of discussion on this board about the accuracy of the KI-67 test. And while some patients want to know their KI-67 score, for most patients it isn't that important....especially when they have a low OncotypeDX score and "favorable" other tumor characteristics. Perhaps if you were on the cusp of having a higher score that indicated that you might need chemo, then the score might be a reasonable thing to investigate. However, my physician made it clear to me that the KI-67 was the "poor man's" OncotypeDX score. With such favorable prognostics, do you really need to know that information?

Before your MO appointment, may I suggest you read the NCCN guidelines...including the footnotes. There's a wealth of information found in the guidelines. Likewise, there is more information that many of us would like to have that is still unknown...such as how important is ovarian suppression for premenopausal women? We won't have the answer to that question either for a while. But it is encouraging to know that the SOFT and TEXT trials that are examining that question have accrued enough patients so that when the trials are completed, we will have statistically significant information.

Good luck.

violet_1 · May 2013

Vora:

Thanks for your response (I appreciate the time we all take to type out/share w/ one another here--it's not lost on me & it takes effort & time...HUG )

And I agree with you, that many other things in life can take us before BC. I don't sit around & constantly worry if/when it might come back--please understand. Not my personality . I've had so many surgeries in my life, lost a baby to SIDS 26 years ago, had 2 miscarriages, adopted a special needs child, & recently weathered a horrendous break up of my 20+ year marriage/family due to my husband going off the deep end into unspeakable addiction ...I could go on & on...but I won't. All this to say that I take most things in relative stride now: It is what it is. I think I've become unshockable!

When I found out I had BC last Nov., it was ON my birthday. The excisional lumpectomy revealed IDC tumor in R breast next to those suspicious calcification clusters. I was a bit teary, but never freaked out. I wasn't surprised, even though the ster. biopsy said it was only severe atypical ductal hyperplasia... Even though the radiologist & docs figured it was "probably nothing to worry about"...UM, NOT. And then they also found the IDC in my L. breast during BMX.

I've had a lot of time now to process since the beginning of my 1st bad mammo. & soooo many biopsies!/tests/surgeries. I've honestly been pretty much at peace the entire time. Like I tell people that ask me why/how I'm doing "so well" w/ knowing I have BC: What are ya gonna do? And why not me? It's LIFE.

That doesn't mean I haven't cried over it at times or lost sleep over it--I have. But, I just have this peace about it. And you are right, we have to go on living & have hope we WILL indeed have a long fruitful LIFE. I'm grateful for sooo many small things now. I take way less forgranted. I do not wake up in fear & dread. I'm sure what has helped me most is the loving support/prayers of friends/family/my-new-"beau"(guy). And if I didn't have my FAITH in God, I don't know where I'd be. He has carried me through it all. i.e.-The fabulous medical specialists/centers I've had with zero insurance problems--it stuns me. No infections, no complications SO FAR.

I guess what I meant before was that I STILL have a gut feeling the BC will come back...NOT that it is necessarily going to kill me or even become stage 4...but that I'm not done w/ it. And, I'm the kind of girl who wants to know ALL of the what-if's/worse-case-scenarios so I am prepared if they do happen. This helps me--to research-the-shet-outta stuff . It doesn't make me dwell on the what-if's, but helps me know what could happen, so I'll be emotionally prepared.

p.s. - I have read a few posts from women on this site who have quickly gone from stage 1 to stage 3 or 4 and my heart goes out to them. Mostly, I'm in awe of them for their bravery & wonderful attitude; I marvel at their fortitude & grace. And I know that IF I find myself in their shoes some day, I'll have some wonderful women to go to.

THIS website is so comprehensive, it continually amazes me in it's span & scope. God bless the Moderators!!!! I'd love to know the history behind this group...perhaps it's on the website already.

****Sorry this got so long. I hope I didn't overshare. Thanks for being here on this thread to help others...

MOI

mepic · May 2013

Big hug to you Violet. With all you've been through you write with such grace.

Vora, thanks again for your information. I am perimenopausal. My ER was 8.3 which is on the low end of the Oncotypedx dx scale. Not sure what percentage that would translate to but 6.5 is the cutoff for being ER+. I am taking DIM which I know doesn't have a lot of expensive studies behind it but I must say I've been on it a week and I feel great. Don't know if its because I'm recovering from bmx or if its the DIM but I definitely feel stronger and healthier this week. I wonder if I could get baseline blood work done this week and then in 2-3 months to see if DIM is bringing my estrogen down even lower. To me feeling great translates to my having the energy to exercise and eat healthier. When I don't feel well is when I tend to eat bad and would be less inclined to be active. May I share this: the night before my surgery I woke up at 2 am as I had been doing for a few weeks due to stress since my dx but that night when I woke up I smelled beautiful flowers, like being surrounded by Hawaiian leis. It was so wonderful and I just knew I was being comforted. Not only did it smell fantastic but I just got this overwhelming sense of peace, beyond understanding, and I fell right back asleep. I had the most restful night of sleep I'd had in weeks! Anyway that sense of peace hasn't left me. I pray for peace beyond understanding for all of you too. Bless you ladies. Thanks for sharing with me.

voraciousreader · May 2013

Violet....last evening the DH and I ran into an acquaintance and the acquaintance, who volunteers her time with the DH asked what I was up to lately. She knew that the DH just recently had emergency gallbladder surgery. Yep! Emergency, as in, he never had a symptom of gallbladder disease before he showed up in the emergency room and was in terrible pain and his face was, before the day was over, as yellow as the happy faces here...! When she asked what I was up to, I told her I was busy trying to keep the DH vertical! It hasn't even been a year since the DH had emergency cardiac-bypass surgery! And the year before that, he had a 6 hour operation. At least that one was scheduled! And did I tell you that he has a rare metabolic muscular dystrophy? I think he's trying to keep up with me. I had two LIFE-SAVING EMERGENCY OPERATIONS as well.....which occurred way before my breast cancer journey began! I'm also an orthopedic physician's best or worst patient...depending on how you look at it. Always breaking something or needing surgery for something else. Last time I saw the orthopedic physician, I had broken my foot and he asked, "Can't you go a year without a problem?" Hmmmm....It's not that I'm not trying..... Funny how we take such good care of ourselves and BAM! And then BAM again! And then BAM! BAM! BAM! Did I tell you that one of my three children was born with an ear problem that required 9 operations in his first 25 years? He's 31 now and we THINK, he might just need one more ear surgery. At least that's what we're hoping.

I'm going to let you and mepic know why I'm such a voracious reader...scouring all the data and trying to make heads or tails out of it. It began with the DH's journey. When he was diagnosed, almost twenty years ago, with his rare genetic metabolic muscular dystrophy, there were fewer than 500 people in the world known to have the disorder. So, for the last twenty years, I've spent a considerable amount of time reading EVERYTHING I can about rare metabolic muscular dystrophies looking for a treatment for him. That experience prepared me for my own experience being diagnosed with a RARE breast cancer. I kinda laughed when they told me mucinous breast cancer was "rare." Seemed pretty common to me compared to the DH's disorder. So, between the two disorders, I became voracious at reading EVERYTHING. Thankfully, I was blessed with taking a statistics course in college and was able to decipher what I was reading....

Last week, I had the pleasure of meeting at Sloan Kettering researchers who study rare breast cancers. I informed them of a study that they somehow missed on pubmed. Pubmed is a government clearinghouse of ALL clinical trials. It's the go to place to read EVERYTHING about EVERYTHING medical. When I showed them the study, I told them when I have down time, I don't bother with Facebook, instead I turn to pubmed. They all chuckled and said that they did the same thing!

____________________________________________________________________

Now mepic....That 8.3 Estrogen score that appears on your OncotypeDX score is NOT low. It isn't even slightly low. It is a good score. It tells you that endocrine therapy should work for you if you choose to do it. If you had a score on the cusp of 6.5, then THAT would be a low score. The 8.3 Estrogen score is validating your respectable OncotypeDX score of 15.

violet_1 · May 2013

V.,

I THOUGHT *I* was THE OCD-Research Queen before I met some of YOU--lol! I love that you can decipher stats, cuz I'm clueless...but I'm learning! You have been through soooo much too! Makes us stronger though, huh?

More later...but God Bless Your Sox! I'm so glad I have you all!!!!!

Off to Nordstroms this morn...

AlaskaAngel · May 2013

What an interesting discussion among you all!

Violet 1, I don't know what part of N CA you are in but I travel there yearly to the foothills east of Sacramento and plan to do so again in about a month.

VR, Our history is similar in that my DH and I were healthy and "invulnerable" until we hit our 50's and 60's... then.... WHAM.... WHAM... we are at the point where we are reluctantly giving up some of the activities we have enjoyed because even with effort we are simply not as able to continue to do them without taking a lot more risk.

I have always wondered and wished that research would spend at least a little time looking at those who do NOT recur, like me, to ferrit out why we haven't recurred, so that the information could be applied to more people who happen to have whatever test characteristics are meaningful from that kind of study so that they could be confident in foregoing some treatments. I was under the age of 55 at time of diagnosis as a HR+ HER2+++ patient and even today, 10 years later, the recommendation for those like me diagnosed now have not changed. Yet I did not do extensive treatment beyond chemotherapy and radiation and toda all tests are normal range and stable other than a slightly high alk-phos that has always been slightly high.

mepic, for whatever reason, I have never ever felt concern about recurrence, but have felt terrorized by treatment. I take it for granted that each of us has no garantee that we will live any particular length of life, and I know that someday mine will end. I can only do what I think is best to get that far.

A.A.

voraciousreader · May 2013

AA....go check out the Mucinous Carcinoma of the Breast thread. Last week I had the pleasure of meeting researchers at Sloan Kettering. They just put together a lab that studies rare breast cancers. I think you will find my discussion about the meeting interesting.

Rest assured that researchers ARE looking at those who don't recurr.

And BTW....I was 25 when my son's health issues began, my health issues began at age 30...while the DH was FINALLY diagnosed at 42. I've had many, many DECADES of health issues....I'm not trying to pat myself on my back. However, when I see people who have NEVER faced a life threatening illness until their later years, I marvel....by the same token, I got to also counted my blessings early on......

AlaskaAngel · May 2013

VR, thanks for the suggestion for the MC thread...

While I'm here... I am happy to see more studies that are focused on ways to analyze who recurs and who does not, with the goal of better knowledge about who can avoid some treatments and who cannot. A trial that I think would fit the area you are interested in for genetic analysis is the NCT00897299. Identifying Genes That Predict Recurrence in Women with Breast Cancer Treated with Chemotherapy.... which seems to be a study of the kind I was talking about.... and yet.... it isn't, quite. Here's the actual language and focus:

"

"RATIONALE: Studying samples of tumor tissue from patients with cancer in the laboratory may help doctors learn more about changes that occur in DNA and identify biomarkers related to cancer. It may also help doctors predict whether cancer will come back after treatment.

PURPOSE: This laboratory study is identifying genes that may help predict recurrence in women with breast cancer treated with chemotherapy."

and

"OBJECTIVES:

Assess the prognostic utility of the Oncotype DX™ 21 gene profile for risk of relapse in women with node positive or high-risk node negative breast cancer.
Identify individual genes whose RNA expression is associated with an increased risk of relapse in these patients.
Perform an exploratory analysis of individual genes whose RNA expression is associated with an increased risk of relapse differentially in patients previously treated with docetaxel."

So.... I know it sounds like the result would, by coincidence, provide the information I am asking for... but to me the result is less definitive of the result I am looking for. I am asking them to use patients like me who have proven characteristics for nonrecurrence over "x" number of years.... characteristics that had a definite outcome, not a speculated risk that assumably is not certain for any particular individual. I'm asking that they nail down what characteristics absolutely provide no recurrence for "x" number of years through actual people who have actually not recurred. My question is a different question, one that would at least let some people definitely benefit.

A.A.

violet_1 · May 2013

AlaskaAngel: What county are you talking about...{grin}...

I lived in L.A./S. Calif. for most of my adult life until 2 years ago (divorce stuff/moved back to my home town here in N. Calif.)...AND, I grew up in this small town in the Foothill area until I was 15...{until we moved overseas to Okinawa...}.

Soooo, this small town must be close to where you are referring to! You can PM me if you don't want to share specifics here.

<1 cm - Stage 1a - Team

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