Diagnosed with DCIS ER+/PR+...need suggestions..

NK1-

I also have DCIS, Er+PR+. My DCIS was 2.4mm. My oncologist suggested that I go on Tamoxifen, but I am opting to not take it. Now, I am a bit older than you are-- age 40, but I honestly felt like they were trying to kill a gnat with a bulldozer when they suggested the Tamoxifen. I am currently undergoing radiation.

  I think I would get 2-3 opinions if I were you. No one has been truly surprised that I am opting out of the Tamoxifen, and I've had a few friends in the medical field who are secretly very supportive of me choosing to not take it.   It's a harsh drug with very serious side effects.  My breast surgeon and oncologist just agreed that they would monitor me closely, and if another DCIS comes up, we will remove it.

Keep your chin up, and I hope you can find a doctor that is supportive of what your needs are.

 NK1,

I found this information on this topic. Also, I had the same concern as I am ER/PR+, was told by my doctor that I could start TX after pregnancy. I hope this helps.

What breastcancer.org says about this article...

EBCC: Pregnancy No Hazard to Breast Cancer Survivors

In the United States, there are about 400,000 breast cancer survivors younger than 45. Many of these women might want to have children. The analysis reviewed here found that pregnancy doesn't negatively affect the future survival of women who've been diagnosed with breast cancer. These results were presented at the 2010 European Breast Cancer Symposium.

Hormones can promote the growth and spread of breast cancer. Hormone levels change during pregnancy, so doctors have been concerned that becoming pregnant after a breast cancer diagnosis might increase the risk of the breast cancer coming back or affect future survival. Some doctors have recommended that women not get pregnant after being treated for early-stage breast cancer.

The analysis reviewed here is called a meta-analysis because it analyzes the results of several different studies. The researchers looked at the information from 14 studies comparing health outcomes, including survival, of between about 1,400 breast cancer survivors who did become pregnant to about 18,000 breast cancer survivors who didn't become pregnant.

Overall, breast cancer survivors who became pregnant had a 42% survival improvement compared to survivors who didn't become pregnant.

• Survival improvement ranged from 14% better to 79% better among the studies.

Researchers aren't sure why the women who got pregnant had better survival compared to women who didn't get pregnant. It could be that the improved survival seen among the women who became pregnant was due to better overall health and not because of being pregnant. So the researchers didn't jump to the conclusion that pregnancy after breast cancer treatment improves survival. Instead, their conclusion was that pregnancy doesn't negatively affect future survival among survivors.

If you're being treated for breast cancer or are a survivor and think you might want to become pregnant in the future, this study suggests that you can do so and not negatively affect your future survival. Learn more about fertility issues and planning for children after breast cancer treatment in the Breastcancer.org Fertility, Pregnancy and Adoption section.

Research News on Risk Factors

• EBCC: Pregnancy No Hazard to Breast Cancer Survivors

You might want to get opinions at one (or all) of the three major cancer centers in Manhattan.  Since you are so young, you are at higher risk - so I'd suggest talking to as many doctors as you can stand and/or that your insurance will pay for until you start to get an understanding of what you're dealing with.    I'm much older than you, so unfortunately I don't know enough to be able to comment about Tamoxifen and pregnancy.

I agree that the comment about you being too young to get breast cancer and therefore maybe you shouldn't have radiation doesn't make sense.  Definitely ask them to explain that, and get other opinions. 

Talk to your GYN, they should know about this.  They may also be able to suggest a different breast doctor, but try to go to someone who specializes in breast cancer,  and I'm a believer in the major cancer centers.  I just think they provide better care.

You should also talk to your Dr. about the genetic test, since you're so young it might be helpful to know if you have a genetic predisposition.

OK - Doctors and Hospitals

New York Presbyterian/Columbia University Medical Center Herbert Irving Cancer Center:   

http://hiccc.columbia.edu/  and     http://www.cumc.columbia.edu/dept/medicine/oncolhema/specialty/153.html  and http://www.breastmd.org/  

Memorial Sloan Kettering Cancer Center http://www.mskcc.org/mskcc/html/658.cfm   and   http://www.mskcc.org/mskcc/html/293.cfm

New York University Langone Medical Center / NYU Clinical Cencer Center  http://ci.med.nyu.edu/about/facilities/nyuccc  and http://ci.med.nyu.edu/  and   http://ci.med.nyu.edu/patientcare/find-a-doctor/breast

You might also want to consider New York Presbyterian/Weill Cornell - Iris Cantor Women's Health Center, which is also in Manhattan.  http://www.weillcornell.org/breastctr/  (Those are the oncologists - I've heard great things about Anne Moore)  also  http://nyp.org/services/oncology/weill-cornell-breast-center.html  and     http://www.weillcornell.org/practice/cantorhc/index.html

New Jersey ideas: 

Sloan Kettering's satellite facility in Basking Ridge:  http://www.mskcc.org/mskcc/html/69954.cfm

Not as familiar with these folks:

Valley Health in Ridgewood:   http://www.valleyhealth.com/Oncology.aspx?id=2032  or, for the medical oncologists,   http://valleyhealth.photobooks.com/directory/list.asp?dbase=main&setsize=10&specialty=41&setindex=0

certainly the size of the tumor is a factor in calculating whether or not to do radiation and/or further treatment but also margin size, grade of tumor, age of patient, probably more.  As I said before, I think you need to talk this through very carefully with a physician who specializes in breast cancer--especially the decision whether or not to do radiation.

swalters - I have not read the studies to which you refer, however, it seems as if you're making a blanket statement about what the studies say.  According to Monica Morrow, now chief of breast surgery at Sloan Kettering, and another world renowned physician (albeit a surgeon where Lagios is a pathologist - still, neither one is a medical oncologist!) seems to be saying something quite different.  It's also worth noting that Morrow gives this talk at the 2000 San Antonio conference, so I wouldn't be surprised if there are more recent studies.

http://www.breastcancerupdate.com/oncology_leader/morrow/nsabp_role_tamoxifen.html#nsabpb24roletamox

NSABP B-24: Role Of Tamoxifen in DCIS 

The other thing we, of course, need to add into the DCIS equation today is the role of tamoxifen. The B-24 study from NSABP, in which DCIS patients were excised, some to negative margins, but not all (that was not a study requirement), and randomized to five years of tamoxifen or a placebo. And, at four years of follow-up, those patients who received tamoxifen had a significant decrease in the occurrence of all breast cancer events, which includes ipsilateral breast tumor recurrences, new, contralateral primary tumors, as well as the rare distant events that occurred in this study. The magnitude of that benefit was a decrease from approximately 13.5 percent in the placebo arm to about 8.2 percent in the tamoxifen arm, and that was achieved by a reduction by 47 percent in the incidence of invasive breast cancers. So, clearly, tamoxifen does have an effect in patients who were excised and irradiated, in reducing the incidence of recurrence.

http://www.breastcancerupdate.com/oncology_leader/morrow/benefits_tamoxifen_dcis.html#benefitstamox

Benefits of tamoxifen in DCIS subsets

Patients under the age of 49 - primarily premenopausal women who did not receive tamoxifen - had a recurrence rate of about 33 per 1,000 patients per year, compared to 13 per 1,000 patients per year for women who were over the age of 50. Treatment with tamoxifen reduced the rate of recurrence in both of these groups of patients and actually to a relatively similar proportion. In the same way we see that, if you have positive margins, as everyone has recognized for some time, even with radiation, the likelihood of local failure is higher than if the margins are negative. In this particular study, 31 percent versus 16 percent, and this difference can, to some extent, be masked by the use of tamoxifen, although not completely.

Of course, the randomized trial that addressed this question was the NSABP's B-17, through eight years of follow-up. In patients who underwent excision to a negative margin - simply defined as tumor cells not touching an inked surface - patients who were randomized to receive radiotherapy, had a highly significantly decreased incidence of invasive carcinoma and a significant, although somewhat lesser decrease, in the incidence of recurrent non-invasive carcinoma.

http://www.breastcancerupdate.com/oncology_leader/morrow/nsabp_role_radio_dcis.html#nsabpb17roleradio

NSABP B-17: Role Of Radiotherapy In DCIS

Should it be treated as cancer or, in fact, can some of it
be treated by simply excision and observation?

Now, when this study was first reported at year four, when this separation in curves was noted, it was suggested that this was really due to the treatment of unrecognized invasive carcinoma and that with further follow-up, this benefit for radiation would disappear. In fact, that is not the case. The benefit has persisted and, if anything, increased with time. So, what everyone would like to know is does this study tell us that all women with DCIS will benefit from radiation or can we identify subsets in whom radiation can be eliminated?

http://www.breastcancerupdate.com/oncology_leader/morrow/nsabp_benefits_radio_dcis.html#nsabpb17benradio

NSABP B-17: Benefits Of Radiotherapy In DCIS

If we were to take the lowest risk subgroup of patients in the B-17 study, namely those who lacked comedo necrosis and whose margins, according to the NSABP definition, were clearly free, how much benefit from radiation do those women receive? And how you express this benefit depends on who you are. If you're an epidemiologist, you can say that by giving radiation you reduce the average annual hazard per 100 women from 1.97 to 1.18 patients with recurrence. On the other hand, if you're a medical oncologist raised in the era of the overview analysis, you say there's a 59 percent relative reduction in the risk of recurrence. A benefit which is clearly in line with many other treatment benefits in breast cancer that we use. Myself, being a rather simple-minded surgeon, when trying to express this to patients, prefer the actual, absolute numeric reduction, which in this case was seven percent at eight years.

http://www.breastcancerupdate.com/oncology_leader/morrow/modes_dcis_management.html#amodeldcismanage

A model of DCIS management

What we begin to see with DCIS, I think, is a picture similar to what we now have with invasive breast carcinoma; namely, that the intensity of treatment needs to vary with the level of patients' risk, and that DCIS is a different continuum of diseases with different levels of risks. And so, it doesn't make any more sense to assume that all DCIS can be treated with excision alone or that all DCIS must be treated with excision, irradiation and tamoxifen, any more than it would make sense to say that all patients with invasive breast carcinoma must be treated with mastectomy, AC Taxotere and tamoxifen. Rather, we need to look at risk for an individual patient. And that's nicely summarized in the B-24 paper in the Lancet, in which over five years, the risk of failure in either breast for patients who were treated with excision alone, is up around the 25 percent mark. For patients treated with excision and irradiation in both studies, the curves are overlapping, they're intermediate. And for patients treated with excision, irradiation and tamoxifen, we have the lowest failure rates of all, down under 10 percent.

http://www.breastcancerupdate.com/oncology_leader/morrow/excision_alone_dcis.html#excisionalonedcis

Excision alone for DCIS

I think we have to believe that the highest order of evidence is the prospective ranIdomized trial. And, so I am more inclined to believe that radiation has a benefit for all patients, albeit the magnitude differs. Secondly, I have a difficult time extrapolating Dr. Silverstein's data directly to my practice, because we do not process tissues in the precise same way that they do. So, I can't necessarily say that my margins are the same. Having said all that, probably the only patients in my practice who get treated with excision alone are those patients who have very small - and by "very small," I mean less than one centimeter of DCIS, and usually substantially less than one centimeter of DCIS - which has been widely excised, meaning it's floating in the middle of the specimen. I don't have a magic margin number, because, you know, we take all our specimens and smash them in cassettes, so that the margins are artificially flattened on two sides anyway. And usually they are older women. I have a disinclination, based on the currently available data, to treat premenopausal women, unless they have, like, one duct of incidental DCIS, without radiation, and they usually are lesions of low grade. So, right now, I am very conservative. I eagerly await the results of the upcoming RTOG study, which will ask some different questions about margin width and tamoxifen after excision alone, to answer that further.

AHA! I found it - the NSABP abstract - http://breast-cancer-research.com/paperreport/bcr-1999-66585

Seclected sections:

Results

Of the 1804 women, 29 became ineligible after randomisation and 14 did not begin the assigned therapy. A further 269 in the placebo group and 295 in the tamoxifen group were not fully compliant. The patient characteristics were similar in the two groups, 65% were postmenopausal, 16% had positive resected sample margins after definitive surgery and more than 80% of the tumours had maximum dimensions of 1 cm or less.

At 5 years of follow-up, 83% of patients who received placebo were event?free compared with 87% of tamoxifen-treated patients. The placebo group had 130 invasive and non-invasive breast-cancer events in the ipsilateral breast, contralateral breast, or presented as metastases at regional or distant sites compared with 84 in the tamoxifen group. Women in the tamoxifen group had fewer breast-cancer events at 5 years than did those on placebo (8.2 versus 13.4%, P = 0.0009). The cumulative incidence of all invasive breast-cancer events in the tamoxifen group was 4.1% at 5 years: 2.1% in the ipsilateral breast, 1.8% in the contralateral breast, and 0.2% at regional or distant sites. In the tamoxifen group the estimated rate ratio represented 37% fewer breast-cancer events. The risk of ipsilateral-breast cancer was lower in the tamoxifen group even when sample margins contained tumor and when DCIS was associated with comedonecrosis. The 5 year survival was 97% for the two groups.

Discussion

Women with DCIS treated by lumpectomy and radiation therapy showed additional benefit from tamoxifen. The advantage was due mainly to a reduction in the rate of invasive cancer, especially in the ipsilateral breast. If the findings of the NSABP B-17 trial are also considered then the cumulative incidence of all breast-cancer-related events in women with DCIS treated by lumpectomy alone was about 25% at 5 years, 13% after the addition of radiation therapy and 8% when tamoxifen was also given. Thus tamoxifen and radiation therapy led to a 68% lower cumulative incidence of all breast-cancer events at 5 years of follow-up than in women treated with lumpectomy alone in B-17. These findings contribute to the decision-making process about treatment of patients with mammographically detected DCIS when radiological or pathological evidence suggests that all of the cancer was not removed after lumpectomy. Moreover, the value of tamoxifen used in combination with radiation therapy to lower the occurrence of invasive cancer justifies the suggestion that combined therapy replaces mastectomy for the treatment of DCIS patients in whom radiological findings are unlikely to be related to an invasive tumour.

And this is pretty interesting, too:  http://en.wikibooks.org/wiki/Radiation_Oncology/Breast/DCIS

The original poster, NK1, is a 29 year old woman with confirmed hormone receptor positive DCIS removed by excisional biopsy.  She hasn't mentioned the grade of her cells, whether there was comedonecrosis, or her margins.  Sure, talking to Lagios may help clear things up, and she might even be able to do no further treatment, but I think it's unfair to suggest that will most likely be his suggestion. It might be, but it also might not. 

As far as I know, rads shouldn't have a risk to the heart if it's the right breast being treated, and if you can get a facility that does rads treatment with you lying on your stomach and your breast dropping below you (yep, another table with a cutout), that reduces the risk of side effects even more.  I don't start rads till Monday, so I don't have personal experience yet - but with my pathology I think I'd be crazy not to do it.

And Tamoxifen....I've heard about lots of things, but I don't think I've heard about long term side effects to the lungs and heart.  This chart lists the scariest side effects, and I'm told they're much more common in older women (my onc said that to reassure ME, and I'm 52):

There's a chart on page 2 of this site - http://www.imaginis.com/breasthealth/side_effects.asp  - which lists the scariest side effects.  I tried to cut and paste the chart, but I couldn't get it to  work properly.  The data is from Fisher B, Costantino JP, Wickerham DL, et al. Tamoxifen for prevention of breast cancer: report of the National Surgical Adjuvant Breast and Bowel Project P-1 study. J Natl Cancer Inst. 1998;90:1371-1388. Additional information, National Cancer Institute .

I was diagnosed with DCIS ER+/PR+ stage 0 as well.  I had a lumpectomy and am in my radiation course (week 4 of 7).  I also elected to not take Tamoxifen.  I was not interested in bringing on early onset menopause.  My oncologist was on board with my decision (and do remember it is your decision) but told me I need to be committed to the schedule of mamograms.  You definately need a second opinion.  You should be able to meet your goals of having a baby and being cancer free.  You just need to find a doctor that supports you.

NK1, as Sandie said, you definitely have time to get a 2nd opinion.  If you are unsure about what to do, take the time you need.  And as dsj said, talk to your oncologist (or to more than one oncologist) and ask specifically about your recurrence risk level with and without each of these treatments.  What is your recurrence risk if you don't have radiation and Tamoxifen, if you take just radiation, just Tamoxifen or if you take both treatments?  This will help you understand how much benefit, in terms of recurrence risk reduction, you will get from each treatment.  The benefit is different for each of us, depending on our pathology and the specifics of our diagnosis and our age.  Once you know what your risk level is, and how much benefit you'll get from each treatment, it will hopefully be easier to make your decisions.

sweatyspice, that's a lot of great data!  I go to the NSABP B-24 and B-17 studies a lot.  

Sandie, I was surprised by your comments about DCIS and Tamoxifen.  It is true that DCIS is not as sensitive to Tamoxifen as invasive breast cancer but one important consideration for anyone with DCIS is that if there is a recurrence, in approx. 50% of cases, the recurrence will be invasive.  Tamoxifen has been shown to be quite effective at reducing invasive recurrences in women who initially had DCIS.  As for your comment "at best there is only a 2 percent reduction in risk by taking" Tamoxifen, I'm wondering if this may be the benefit specific to your case.  For example, with your very favorable pathology, your recurrence risk with no radiation or Tamoxifen might only be about 5% - that would be consistent with a number of studies I've seen.  Tamoxifen would reduce a 5% risk by about 2 percentage points, down to 3%.  So this might be the 2% reduction that you are referring to.  But in this example, the percent reduction in risk is actually 40% (from 5% down to 3%).  This would be consistent with what most studies have shown.  And this means that for someone whose pathology is not as favorable and who starts with a higher risk level, the 40% reduction in risk would represent a greater benefit.  If someone has a 12% recurrence risk, Tamoxifen can reduce this risk to about 7% (a 5 point benefit). Someone with a 20% recurrence risk might be able to reduce her risk to 12% by taking Tamoxifen (an 8 point benefit). I don't know if this explains your comment, but it might.

NK1, good luck with your decisions.  By the way, do you have a copy of your pathology reports?  If not, you should ask for a copy.  There will be information in there about the grade of the cancer and the size of the surgical margins.  I don't see any reference to either of those factors in your posts here so I don't know if you have this information.  While there are a number of factors that go into recurrence risk (and therefore, your need for radiation and/or Tamoxifen), grade and margin size are among the most important.  If your margins are not large and if you have grade 3 DCIS, then most doctors, probably including Dr. Lagios, will recommend radiation. But if you have wide margins and a lower grade cancer, then radiation might be optional or unnecessary.

Grade 1 is good, it's the least aggressive.  (The categories go from grade 1 to grade 3, grade 3 is the most aggressive and grade 2 is in the middle.)

Did she say how big your margins were?  Just saying they were negative doesn't give you enough info, in my opinion.

With grade 1, there's a chance you could get away without doing rads - depending on your margins and what your Drs think about your age as a factor.

I think you should do the genetic test if you are prepared to deal with the answer, just in case you do have a mutation.  It usually takes 2 weeks after the time they submit your blood to get results. 

Very strange that they don't mention your margin size in the reports.  I'm even more inclined to tell you to get a second opinion on your slides.  

The genetic test (BRCA test) is done to see if you have one of the known genetic mutations which might predispose you to breast and/or ovarian cancer.  People who have family histories often have the test done, and people who don't know their family history (like people who were adopted) or people who have very teeny families (like me) often have it done as well. 

Since I was 51 at diagnosis, I didn't look into it from a young person's point of view, so I'm sort of pulling this "out of my ass" (so to speak) - but if I remember correctly, of young women who got BC, a higher than average percentage had a genetic mutation - so that may be why your Dr. mentioned it. 

Hopefully someone will come along and post who knows more about this than I do.  The best I can say is to look into it and discuss it with your Dr. 

Here's some info:  http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

According to the test maker's website, if you're younger than 50 at diagnosis but no other family history, you have a 6.8% chance of having a mutation. If you're over 50 at diagnosis, you have a 2.9% chance.   http://www.myriadtests.com/index.php?page_id=165

Edited to add: Since you're so much younger than 50, the chance of your having a mutation may be higher.

I agree with dsj.  Meet a doc at MSKCC and let them look at ALL of your reports, films, slides, etc.  You want to get another opinion on everything.

You shouldn't have to wait to get a second opinion.  If you do the genetic test, you won't get the results back for at least 2 weeks after you submit the blood sample, and there's no reason to wait that long for a second opinion.  Also, no reason not to meet with the rad onc at your current hospital. 

If MSKCC tells you something different, or if they tell you the same thing but you just want to switch hospitals, there's no reason you can't switch after a consult with the rad onc where you are now (assuming your insurance will pay for it, mine paid for all my consults - and there were MANY - but I don't know about other insurance plans). 

If you do radiation though, you can't switch places midway through it.  You'll have to start and finsh rads at the same place. 

Edited to add:  Obviously, I don't know your ethnic background and you don't need to tell me - but if you're Eastern European Jewish on both sides, that's also a higher risk factor for a genetic mutation. 

Hmmmm.....well Eastern European/Jewish or Asian or anything else - it still SUCKS.  The whole damned thing SUCKS.  On that, I'm sure we can all agree.