Marie_S_

Hi Louishenry -
I'm 3 and a half years out from diagnosis at age 49 with not just DCIS, but IDC as well. I refused radiation and also refused any hormonal therapy and I'm still cancer free after just a lumpectomy. Your specialists telling you that low grade, non-comedo isn't as serious are correct. Even having had invasive cancer along with the DCIS (both within the same tumor just under 1 cm in size) and both low grade, I felt very comfortable doing nothing other than having the tumor surgically removed.

I'm having some trouble wrapping my brain around the rebuttal from that Dr. Swain. She was rather quick to knock the research of Dr Li (the one reporting that tamoxifen use seems to increase the risk of subsequent ER negative breast cancer). One of pieces of information she offered in that rebuttal is data from the NSAPB. The following is Table 2 taken diectly from her editorial -
http://jnci.oxfordjournals.org/cgi/content/full/93/13/963/T2

Am I just being oblivious to something I should be understanding but am not...or does anyone else see that the data she provided DOES INDEED, contrary to what she's saying, seem to support Dr. Li's findings.

When I'm looking at this, I'm seeing information that's telling me that in the NSABP P-1 study, there were 175 recurrences for those on placebo with 130 of them being ER+ and 31 being ER-. So that was 74% of the total ER+ and 18% of the total ER-. The Tamoxifen arm of the study had 89 recurrences with 41(46%) being ER+ and 38 (43%) being ER-.

And the MORE study statistics regarding Raloxifen graphed below those above are looking the same to me too... a far greater percentage of ER negative recurrences in those taking the drug as compared to those on placebo.

So what am I not understanding here??? Someone help me out BEESIE???

Rather than contradicting what Dr. Li has reported as she's attemping to do in this editorial, what I'm getting from this chart is that although the overall incidence of recurrence is lower for those who are on one of the antihormonal drugs, the incidence of ER negative cancer is higher in those who do get another breast cancer. Isn't that exactly what Dr Li is saying is happening??

Here's Dr Swains full editorial -
http://jnci.oxfordjournals.org/cgi/content/full/93/13/963#T2

I did much of my research on my own cancer mostly using PUBMED (National Library of Medicine) which provides mostly abstracts of research articles and then tracking down additional information or full-text articles from the hospital library where I currently work or simply off the internet when available. But a lot of the basics of what I know about breast cancer and it's ever changing trends in treatment comes from having been a hospital oncology nurse for nearly 14 years...with an additonal 2 years part-time in an oncologists office. I also spent 2-3 of those hospital years being responsible for coordinating and being present at the weekly cancer conference which was about 95% breast cancer cases. That's the gathering of all the specialists to discuss and make recommendations on certain cases that you sometimes hear posters mention here. You learn a whole lot just listening to them hash it out week after week.

I think it very possible you are a low risk from recurrence from what you've said here, but there is literally no doctor who will currently recommend that you do nothing more than the lumpectomy and SNB regardless of how low your risk might be. They will generally ALWAYS follow the standard of care...and the standard of care is currently a minimum of radiation following any lumpectomy for an invasive cancer and hormonal therapy for estrogen receptor postive tumors. So if you're considering declining any or all further treatment for this type of cancer as I did, know that this is a decision you will have to make completely on your own.

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... If you only have a recurrence, that is easily treated, and you are in no extra danger than you were the first time around.

BUT, if you metastasize, as Elizabeth Edwards did, there is no cure and you will die...

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First and foremost, I just have to say that you need to recognize that it's highly unlikely Elizabeth Edward's breast cancer was small and/or low grade... which is what the original poster's cancer appears to be and may certainly have some weight in her questioning how far she needs to go in the treatment arena. So from the onset, ELizabeth Edwards breast cancer WASN'T the kind least likely to ever become metastatic which is in sharp contrast to most anyone with a small, low grade invasive cancer. That she became stage IV and metastatic and that it occured within just a few years of the original diagnosis despite neo-adjuvant chemo, surgery and radiation is a big hint that it's an aggressive breast cancer. There doesn't seem to be much, if any, very SPECIFIC public information available about her cancer. All I've ever read about her's was that it was originally IDC stage II, node negative at diagnosis and that she underwent neo-adjuvant chemotherapy followed by surgery and then radiation. No mention at all about grade, actual size, the presence or absence of vascular invasion, Her2 status etc etc etc etc. However, small, low grade tumors don't usually get treated with neo-adjuvant chemotherapy, so I think it's safe to assume that her's was neither small nor low grade.

While I truly do understand the point you're trying to make in comparing Elizabeth Edwards misfortune on her cancer recurrence being metastatic to your feeling that everyone with breast cancer should avail themselves of any and all treatment that might lower even the tiniest little bit the risk of a recurrence, I think you need to step back a moment and absorb the fact that NOT EVERYONE has had a breast cancer that can be compared to Elizabeth Edwards situation and NOT EVERYONE needs to live in fear that they will eventually become metastatic and die from the disease if they don't blast it from every possible angle. Quite to the contrary, most breast cancers which are adequately excised surgically will never reoccur and will never become metastatic...and a large number of them being those treated very simply with surgical excision alone. And although at this point in time it is virtually impossible to predict with 100% certainty exactly who all those women are that will not reoccur, it still IS very possible to predict who are the most likely to be among that lucky group...that group being those who don't necessarily have a high risk of ever reoccuring or becoming metastatic and who therefore have a much wider berth in deciding whether or not to accept certain treatments and the inherent risks that go hand in hand with those treatments.

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...As for second opinions on the pathology, they said that they are the 2nd opinion of the biopsy and if I want one of the lumpectomy I can get it. They see this all the time. I was very surprised by that.

The told me not to get breast MRI's either. That they pick up alot of false positives.

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I think it's quite possible that pathologists pick up a few false positives too. Maybe since working in the medical field for so long, I'm just a bit less trusting than many...but I have a hard time believing that a biopsy needle just happened to be so lucky as to hit and remove IN IT'S ENTIRETY the only tiny little bit of DCIS that existed in that entire 1 cm area of concern and left nothing to be found in the entire lumpectomy specimen. Looking at the whole situation realistically, what are the odds of that actually happening??? I realize there are other women here who say something similar has occured with them and I question those as well. However, my gut feeling is that there was no DCIS to begin with and that it may have been a misdiagnosis that unfortunately resulted
in you having a lumpectomy...something they might not necessarily be eager to tell you about if they could offer another explaination that would appease you.

If I were in your situation, I would DEFINATELY seek out another INDEPENDENT opinion on both the lumpectomy specimen and especially, that biopsy specimen. And I would not consent to radiation until it was all confirmed to my satifisfaction.

NCBOUND2009,
Print the following link and show it to your pharmacist and your doctors. http://dnadirect.com/professionals/tests/2D6/inhibit_drugs.jsp

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The oncologist just called and said, "Stop taking the Lexapro". It is true that it makes the Tamoxifen uneffective. I am so thankful that you pointed it out. I guess I will find out my side effects now. Thanks so much for the info. It may have been a life saver.
Nancy

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I'm not so sure it's a good idea to just stop it cold turkey. You should probably wean off it. And from what I've read in other sources, lexapro is weak inhibitor of tamoxifen compared to some SSRI's so you still might not get any dramatic side effects after stopping it. The other thing to consider is whether or not you're genetically a poor metabolizer of tamoxifen because that alone would explain no side effects. Have you had the test to determine if you're metabolizing it normally?? If you're a poor metabolizer, even a weak inhibitor like lexapro might be all that's necessary to completely block tamoxifens effect. If you haven't had the test and you're going to continue taking tamoxifen, it would be a good idea to ask to be tested...especially if you still have no side effects after completely stopping the lexapro.

I suppose it's possible that someone could be metabolizing the drug normally, not taking any drugs that inhibit the tamoxifen and still not have any side effects at all. However, it's worth checking out the whole situation to be sure because you certainly don't want to be taking a drug that you think is helping you prevent a recurrence if it's really not doing anything at all.

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I'm 50 and premenopausal. I have been on Tamoxifen for 6 months. I don't have any side effects. My oncologist has never recommended that I get my ovaries out. I don't take any other medicine beside Tamoxifen, Xanax and Lexapro. My doctor wanted to keep me on all of them.

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Nancy,
Maybe the reason you have no side effects is because you're taking lexapro with the tamoxifen. It's possible your doctor isn't aware of this interaction yet. Amazingly, some still aren't.
http://jop.ascopubs.org/cgi/content/full/1/4/155

Quote from the above link -

"The Bottom Line: Do Not Administer Any SSRI With Tamoxifen

The future is exciting with the possibility of developing truly customized, 100%-effective therapies for our patients. For the present, however, besides entering our patients onto well-designed clinical trials asking important questions, we must not encumber our currently available therapies with combinations of drugs that effectively make them a placebo. The bottom line is this: Do not administer any SSRIs (fluoxetine [Eli Lilly and Company, Indianapolis, IN], paroxetine [Paxil, GlaxoSmithKline, Pittsburgh, PA], sertraline [Zoloft, Pfizer, New York, NY], citalopam [Celexa, Forest Laboratories, Inc., New York, NY], or escitalopam [ <font>Lexapro <!--color--></font> , Forest Laboratories, Inc.]) concurrently with tamoxifen. When in doubt, check it out. Sources are listed in Table 3. However, because this interaction is so recently documented, it is not yet included in many of the standard references. Be the first to tell your colleagues."

Wendy,
I had a single well-differentiated, low grade (grade 1)tumor that was a mixture of 60% low grade IDC and 40% low grade DCIS. Was dx'd just a week after my 49th b-day and just 8 months after beginning a natural menopause. The size of it was about 0.9cm The only treatment I consented to was a lumpectomy and single node SNB (refused post lumpectomy radiation, tamoxifen and arimidex)...so I'm one of those "surgery alone" people.

I don't even see an oncologist anymore...just get yearly mammograms with the last one being completely clear in Feb/March of this year. I have somewhat of a confidence advantage with mammograms since I happen to have extremely non-dense breast tissue making it very easy to visualize any little abnormality. No doubt this small, slow growing tumor would have been picked up years earlier had I not been so foolish as to blow off getting mammograms for 7-8 years prior to the diagnosis. It wasn't even palpable at diagnosis...just got tired of listening to my PCP crab at me about not getting routine mammograms, so finally got one done and there "it" was clear as day.

Anyway to answer your question, it's been 3 years and 4 months since my diagnosis and all is well thus far!!

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...Having said all that, as I mentioned in my post in the Hormone Therapy forum, I do believe that Tamoxifen is a good drug that provides real benefit to a lot of women in terms of significant risk reduction. It does prevent a lot of recurrences and new occurrences of breast cancer. I just don't think that it's appropriate or necessary or provides benefit to all women who've had breast cancer...

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I too, think Tamoxifen is a good drug providing real benefit. However, I think it's being vastly overprescribed and given to women who can hope to gain only very little or no benefit at all from it. And that's something I find very frightening and distubing. Let's look at the basics here...tamoxifen IS A CARCINOGEN. It CAUSES cancer is some people. It's not as if we're talking here about a vitamin pill!!! Just a few days ago there was a post on this forum from a younger women newly diagnosed with breast cancer and BRCA negative. This womans oncologist wanted to prescribe tamoxifen to HER MOTHER as a preventative...an older woman who had never even been diagnosed with breast cancer herself. I said nothing at the time, but it made the hairs on the back of my neck stand on end just reading about it!!!