Stage 1 and Mets

Okay, that link worked, but I'd have to buy a subscription to log on! That ain't going to happen...sigh.

oh - Janet -- for those mucinous and tubular ER + less than 1cm, there was a footnote that said  you could consider adjuvant endocrine therapy for "risk reduction and to diminish the small risk of disease recurrence."  So, one sentence said you don't need it...but at the very end of the sentence it puts a footnote that says you could consider it.  I guess that's why we need an experienced oncologist to sort these guidelines out.  And often we need the opinion of a second or third doctor.

Voraciousreader...thank you for the links!  It looks like my onc followed somewhat standard procedure, but it 'does' say that adjuvant endocrine therapy could be considered for risk reduction....will be checking into that with much more assertiveness!   

Thank you Barbe and Janet for responding also.  I will be searching the forum for the mucinous threads.

Happy New Year to each of you...may this be the year of the cure....

Dee 

nannadee-

I think, since pure tubular and pure mucinous breast cancers are classified as "favorable," the logic for recommending adjuvant endocrine therapy is geared more at preventing cancer in the other breast in addition to preventing the small risk of distant recurrence.  I would bring that up with your physician when you see him/her.

Based on the newest 2011 NCCN guidelines, it appears that I'm being overtreated.  But since I haven't had any side effects so far from adjuvant endocrine therapy, I'm going to continue the course.  What disappoints me about the new guidelines is that the Oncotype DX test isn't being recommended for those of us with ER + tubular or mucinous breast cancers.  I really have to think this one through.

Barbe1958 --

The latest NCCN 2011 Guidelines, not including the Oncotype DX test simply does not make sense to me for people like myself who have mucinous or tubular breast cancer that is ER +.  I know that the test isn't validated as well for our type of cancer as it is for more "traditional" breast cancer.  However, the folks that designed the Oncotype DX test did some post-marketing survey of the rare "favorable" breast cancers and the results were as follows:

Genomic Signatures in
Pathologically Favorable Breast Cancer Subtypes

"Baehner and colleagues^[10] reported the postmarketing experience regarding
the Oncotype DX RS in patients with favorable histologic breast cancer
subtypes. Of the 25,475 tumors tested over nearly a 2-year period and reviewed
by academic breast pathologists, about 80% were pure ductal histology: most
(94.5%) were either ductal, lobular, or mixed histologies and about 5% were
less common subtypes. Compared with the median RS for ductal carcinoma (18.2),
median RS was significantly lower for classic lobular (17.5), solid/alveolar
lobular (16.1), mixed ductal/lobular (17.4), tubular (15.2), cribiform (13.7),
mucinous (16.6), and papillary (7.8) subtypes. It was higher for the medullary-like
(33.1) subtype. RS ranged in most subtypes from a low of < 10 (usually ≤ 3)
to a high of approximately 60 to 90 in most subtypes, except tubular cancers,
which rarely had high RS. Although tubular cancers exhibited somewhat lower
median quantitative ER expression than ductal cancers (9.2 vs 9.7), their
proliferation scores were substantially lower (4.3 vs 5.3). This report
provides some insight into the biologic characteristics of less common breast
cancer subtypes"

 From looking at those data, it would seem to me with those average "low" scores, patients would still benefit taking the Oncotype DX test AND having adjuvant endocrine therapy.

Meg that was always my understanding that although you are given a 5 or 10 year range of NED there is no cure. Those stats are not completely accurate depending on your specific case and what you choose for therapy.  It also appears that once hormone negative cancers pass the 3-5 year mark their risk of recurrence is much lower than ER+ cancers.

Here are some other links that might help out with understanding risk/recurrence. Thing is you don't know what medical science will do in the next 5-10 years. Best to do what you can to keep your recurrence risk down and live your life.

Breast Cancer Recurrence | Background Information
http://www.gaeainitiative.eu/word_page/BC_Recurrence.htm
Lists risk factors for recurrance.

Breast cancer recurrence seen as low after 5 years
http://www.reuters.com/article/idUSN1248209720080812
The study found that women who had tumors known as estrogen receptor positive, in which the hormone estrogen is driving the tumor, had a higher risk of these late recurrences compared to women whose tumors were not this type.

Women who had low-grade, or less aggressive, tumors, actually had a higher risk of late recurrence than women who had higher grade tumors, Brewster said. "That was certainly a finding that we were surprised to see,"

Risk of Recurrence in Early Breast Cancer
http://www.lifeabc.org/risk_recurrence_more.html

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All I can do is take a chance the therapy will work and hope the odds (for a change) are in my favor for long survival. I may have no nodes or LVI but I do have high grade, ER+, large tumor, high proliferation rate and HER2+. Not good but I'm still not going to spend the rest of my life no matter how long/little I have worrying about it unless it happens.

Beesie - Your logic is duly noted.  Without a doubt, I agree that the clinicians have a hard time figuring out a treatment plan for the rarer breast cancers simply because aren't enough clinical trials for our type of cancers.  I'm just happy that there are a few researchers who have taken on the joy of studying rare favorable breast cancers so they can help guide clinicians.  I now look forward to seeing the 2012 NCCN Guidelines...to be continued!

Happy New Year!

http://www.rarediseases.org/news/speeches/workshop_ultraorph_gen_disease

Beesie - When you have a moment, read the link above, so you will understand what I'm talking about.  Thanks!

Barbe there are so many factors that increase or decrease our risk. Here are a few that certainly effect that 5+/10+ recurrence risk:

* High tumor grade
* Node involvement
* High mitotic rate
* LVI
* HER2+
* ER+/PR+ (long term risk)

I'm not putting my head in the sand since I have 5 of those above factors but again I can only live my life and do what I need to do to remain healthy… and of course hope I have some luck for a change or medical science finds a cure before I have issues. I'm only 49 and otherwise in perfect health. Statistically a good chance I will live long enough to get it again but that doesn't mean I will.

Barbe, I very rarely drink (can count the number of glasses of wine in a year on one  hand). I have put on a few since chemo and the onc is not concerned. I was in excellent shape when I started this journey, eating right, lots of exercise both stregnth and aerobic. The docs kept telling me how thin I was. (Actually healthy weight not thin). I quit smoking over 5  years ago. I'm 49 almost 50.

Weight loss is hard. It took me 6 months just to lose the last 6lbs with both diet and exercise. Just be patient and don't give up. It is easier for some and harder for others. I've never really been overweight so I know I have it easier plus don't have the added issue you have… but every little bit helps. You don't need to be skinny just healthy.

We do the best we can do. I was leading a very healthy life style. I was told my cancer started abotu 4 years ago ( fast grower). Yes that would mean it started after I quit smoking. I was in 2 really stressful jobs but still didn't pick up smoking again. Guess stress can really do a job on our systems. My point, it's not just about physical health but mental health too.

I know I have to die some day I just don't want it to be by cancer. I given the choice it would be firing squad and not for quite some time yet ;-)… and Barbe I know you get my humor.

Thanks lago, voracious & others for those links.  I guess the best we can hope for is that a breakthrough will occur before the 5 yr end of tamox, AI & other treatments that can continue to prevent recurrence at that point.  I don't believe the hormonal therapies make you more likely to have a recurrence once you stop the treatment (which some people tend to imply)  -- I think the bounce in stats mean they have just been delaying the onset of a recurrence.  In my opinion, the breast cancer awareness movement carries some responsibility making most people believe that '5 year survival' somehow means you're home free.  I heard an ad for the spring Avon walk & at least their marketing centers around ending this 'deadly disease.' 

What keeps me up at night is Dr.Klaus Pantel presentation at San Antonio - that 36% of women with treated early breast cancer and no clinical signs of disease have circulating tumor cells in their bone marrow and that they are different from the original tumor!  I have not seen anyone post on bco that they had a bone marrow test at an early stage - how did they know about all these women!!!??

http://www.knowbreastcancer.org/news-research/news/advocate-reports-from-sabcs-2010.html

voraciousreader, thanks for that link.  Very interesting. 

The issue of how to deal with orphan diseases is complicated because so few people have these diseases and therefore it is impossible to set up clinical trials or research studies under "normal" conditions and with "normal" criteria.  I understand that issue but I don't think that rare breast cancers fall into the same category. Breast cancer is such a common disease that even "rare" breast cancers are actually quite common.  Approx. 1.3 million women are diagnosed with breast cancer every year worldwide; this means that a rare form of breast cancer found in only 1% of women with breast cancer will still affect 13,000 women per year.  Given this, I can appreciate why the medical community would not want to change their standards or lower their burden of proof before recommending changes to the treatment plan for rare breast cancers.

I think the real issue is that there are not enough breast cancer researchers who are consciously choosing to include women with these rare cancers in their studies.  The fact is that when you develop a research study, you get to decide who you want to include in the study.  A particular type of rare BC may only be found in 1% of women with BC however there is no reason why researchers can't choose to oversample in order to ensure that there are enough women in their study with this particular type of BC, so that the results at least stand a chance of being significant and hitting the "burden of proof" standards.

As for the NCCN Guidelines, you have to keep in mind that these are only guidelines, the base from which an individual's treatment plan should start to be developed. I've been referring to the NCCN guidelines for years; I like the guide because it represents "standard of care" guidelines against which we can compare our own treatment plans. But because they represent "standard of care", I've never considered them to be leading edge, nor do I think that they should be. The fact is that I've read lots of really interesting research studies over the past few years with results that are not yet incorporated into the NCCN guidelines. This is where individual doctor's judgements need to come into play, and where individual patient's interests and preferences need to come into play. There are situations where it makes sense for doctors to apply the latest findings to the treatment plan, and situations where that's not necessary and/or advisable. As an example, the Oncotype test just this year is making it into the guidelines however many doctors have been basing their chemo recommendations on the Oncotype test for several years now.  Perhaps in a year or two, when more research results are available, the guidelines will be changed to include the Oncotype test for some of the more rare BCs. In the meantime, there is no reason why an individual doctor can't refer to the study that you referenced and use that to adjust a patient's treatment plan.

Beesie -  Baehner and colleagues work for the folks who make the Oncotype DX test.  I worry that their continued postmarketing surveillance will be hindered because now insurance companies will be less inclined to cover the cost of the test for people with mucinous and tubular breast cancers since it was sidelined in the 2011 NCCN guidelines.  I know that when I had the test, initially, my insurance company didn't want to cover the cost.  Thankfully, it was appealed and paid.  I've read through other insurance companies guidelines and many of them single out mucinous and tubular and do not want to cover the cost. 

I've been in touch with one of the blessed researchers of rare breast cancers.  She echoes the sentiments of a number of the researchers that I have come to know on my husband's journey.  Very little money for research and even fewer researchers and clinicians interested in making a career out of "rare" disorders. 

We'll see what the new year brings.  Hopefully, one day, there will be a cure.