Hormone status, risk level, and tamoxifen

kayfry · January 2015

I am age 64, 2 weeks post Lx for DCIS, with a 2.4 cm tumor removed and clear margins. Although my original core needle biopsy was read by local pathologists as a fairly small (about 1 cm) Grade 3 (with comedo necrosis), ER low positive (5%) and PR-, the final report after surgery was Grade 2, ER and PR both borderline positive (10%). The larger tumor was the result of an additional diagnostic mammogram performed at Johns Hopkins, where I chose to get treatment, that identified a second suspicious area of calcifications some 1.7 cm from the first; in order to get the clean margins that my surgeon fortunately succeeded in getting, an area more than twice as large as originally planned was removed. No invasive cancer was found. Because of the size of the tumor, the grade, and comedo necrosis, I am planning to start a 4-week (accelerated) course of radiation in about 5 weeks from now. At my post-op appointment yesterday with my breast surgeon and radiation oncologists, the RO told me that I would not need or benefit from tamoxifen. But then my BS suggested that I should see the medical oncologist to discuss whether I should have tamoxifen after radiation or not. He said that my 10% positive ER & PR status puts me in a gray area—right on the edge of what some medical oncologists would consider treating with tamoxifen. I agreed to meet with the MO and have an appointment scheduled, but I had been told by my original RO up here in PA, and then by the Hopkins RO yesterday, that tamoxifen would not be appropriate for my case. I have not yet been able to get an assessment of my actual risk of recurrence, given all of this, lack of family history of BC, age at Dx, etc., but I need to figure that out, I think, and I'm hoping MO will discuss this with me.

I know that tamoxifen carries its own risk of side effects, both serious (uterine cancer) and less serious but annoying (hot flashes?), and I do not want to take it if it will provide little benefit. I am already doing rads, which I also very much would rather not do, because I'm convinced it will provide a significant risk reduction for recurrence, and I'd hoped this was enough. Has anyone else faced this question, with such borderline hormone receptor status? If so, what did you decide to do? Since I would not start tamoxifen until after rads, I do have a little time to make this decision.

ballet12 · January 2015

Kayfry, Based on my initial 4 cm surgery for DCIS, I had 30 percent of excised cells reactive to estrogen and 0 percent reactive to progesterone. In my re-excision, the much smaller amount of tissue taken out was 90 percent reactive to estrogen. My third surgery was clean. I opted out of either tamoxifen or an aromatase inhibitor. I did do the Canadian protocol for radiation, which is what I think you are getting as "accelerated". My hormone situation was less borderline than yours, but I opted out of using hormones. It would be good for you to see a medical oncologist. Also, you can go to the Memorial Sloan Kettering website and look up the "nomogram" which gives a general sense of risk reduction, based on your specific history (family history, grade and I believe size of DCIS, number of surgeries to get clean margins, etc.) You can plug in the numbers with both hormonals and radiation and with radiation alone. If I had your stats with the very low estrogen, I would have automatically skipped the hormonals, but its a very personal decision. My risk of invasive breast cancer recurrence without the hormonals was relatively low, and the hormonals would only cut that risk by about 50 percent, with significant potential impact on quality of life. I did do a medical oncology consultation before I made the final decision. My radiation oncologist was concerned about occurrence in the other breast due to family history, but I'm brca negative, so I'm not terribly worried. I am close in age to you. I haven't looked back.

Annette47 · January 2015

Haven't faced the same decision (both my ER and PR were >90% and I am much younger), but that's definitely a conversation to have with a medical oncologist. The radiation folks might be right, but I wouldn't count on their knowing the nuances of borderline numbers and risk reduction. Obviously there is a benefit for people like me who have strong receptor numbers, and no real benefit for people who are hormone receptor negative, but I'm not sure at what point you start to see benefits.

One thing to keep in mind if the MO does recommend it though (and they may not, I really have no idea) is that the significant side effects (e.g. blood clots or uterine cancer) are rare in the absence of other risk factors and the "quality of life" side effects go away after you stop the drug, so if you are on the fence about whether or not to take it you can always give it a trial run and see how well you tolerate it. For what it's worth, I have found it very tolerable.

Best of luck!

kayfry · January 2015

Annette, thank you. Yes, >90% positive would be a whole different situation. But it's good to know you haven't been much bothered with side effects.

kayfry · January 2015

Ballet12, this is very helpful, thank you! Yes, my radiation will be the "Canadian protocol," basically although at Johns Hopkins they call it "hypofractionated whole breast irradiation." It is 19 treatments total, 15 whole breast and the last 4 directed at just the Lx area. The MSL tool is awesome, thanks so much for that link! So I plugged in my info, and without tamoxifen, my probability of recurrence comes out to 3% at 5 years and 5% at 10 years. WITH tamoxifen, I get 2% at 5 yrs and 3% at 10 years. I'm pretty comfortable with declining tamoxifen based on those numbers. Actually, just for the fun of it, I want to go back and punch in the numbers without radiation, just to see (although I am definitely planning on doing the radiation).

I do think it's worthwhile for me to go and talk with the MO, so I will. I might learn something. But right now, I don't think I can imagine much of a scenario in which I would be persuaded to go for the hormonal therapy. The more serious tamoxifen risks are downright scary to me (blood clots and strokes both run in my family, for example). And the aromatase inhibitors, among other things, carry a risk of joint pain—since I already have plenty of arthritic joint pain, that doesn't seem like something I'd want to subject myself to.

kayfry · January 2015

Without radiation, I would get 9% at 5 years and 14% at 10 years. That's enough of a benefit to me, although it's lower than the 50% reduction with radiation after Lx I've seen elsewhere.

Becky63 · January 2015

At age 63, I had a bilateral mastectomy for 14.4 cm DCIS. I had my 6 mos. checkup with the BS today. I was >90%+ for estrogen & progesterone. I saw two medical oncologists & both advised no f/u treatment. I'm a nervous wreck anticipating metastatic cancer. I hope that fear leaves soon. Good luck with your decision.

TB90 · January 2015

My team in Canada stated that they rarely recommend hormonals for pure DCIS anymore. I was close to 100% positive so really explored this further. I too was scared of not doing everything to ensure no further occurances of breast cancer. But the research plus the SE of hormonals and very real testimonials of women on these boards, convinced me that the small benefit did not warrant those risk factors. Becky, those of us with DCIS, even with risk factors of high grade, large tumours, etc. actually have a very low risk of recurrence. Studies have shown that women with DCIS overestimate their risk factors. I too have suffered anxiety worrying about that slim chance. I am six months ahead of you with my dx and still worry. I am working very hard on putting this into perspective and being more rational about it, but it has been difficult. And DCIS cannot become metastatic unless it comes back first as invasive breast cancer. I have a few studies that I keep handy to reread when I need a reminder of the real risk factor (versus my imagined risk factor). I hope all of us with DCIS can get to the point where we feel very good about our choices and our futures! hugs to all

SpecialK · January 2015

Not necessarily specific to the Tamoxifen conversation, there is a relatively new Oncotype Dx for DCIS - here is a link - it has prognostic value for recurrence prediction, which might help inform Tamoxifen use.

http://breast-cancer.oncotypedx.com/en-US/Patient-DCIS/WhatIsTheOncotypeDXCancerTest.aspx

Also, agree rad oncs should not be discussing systemic treatment - that is for the med onc.

TB90 · January 2015

SpecialK: Thanks for the information, but I do not believe it is an option for women having had mx?? I am not certain where I got that info from and it may be absolutely wrong. Please comment if you see this. Perhaps it is because the risk of a recurrence is so low following a mx that it is not worth the cost??

SpecialK · January 2015

TB90 - you are correct, this test is for what is termed "local excision" which I take to mean lumpectomy. The reason, from what I can surmise from the Genomic site, is that this test is DCIS specific and forecasts local recurrence - which would be much more rare after a mastectomy, so a less effective use of a testing modality. It looks like the others who posted on this thread had lumpectomies so possibly this would be useful to them. Thanks for the clarification - it's important info!

ballet12 · January 2015

They specifically state on the website that the Oncotype test is for those who had a lumpectomy as opposed to a mastectomy. The main purpose of the test is to determine whether radiation treatment would be appropriate. I was treated at Memorial Sloan Kettering Cancer Center, and they do not use this test for those with high grade (grade three) DCIS because they don't feel that it adds to the equation as to whether radiation treatment is necessary. It's most useful for low grade DCIS. They also said that if you get an "intermediate" score, it's unclear what to do. Needless to say, I didn't get the test. It would have been nice to know the score, as an academic exercise, as I did decline hormonal treatment. The radiation treatment is really very successful in reducing recurrence risk in lumpectomy; of course not as much as mastectomy, but still, it brings the numbers down very low. Yes, there are those on this website who have had recurrences after lumpectomy, in the treated breast, but I'll bet that if bco.org could do a survey of all of the DCIS patients, it would be around 10-12 percent of the population at most (my own total recurrence risk is estimated to be 12 percent--50 percent risk would be DCIS, and 50 percent IDC).

kayfry · January 2015

I kept hearing about the Oncotype test from some others on a different forum here; some had it ordered by their doctors, others insisted upon having it done. Since my BS at Johns Hopkins hadn't mentioned it at all, I went looking for information. I learned, among other things, that my BS doesn't use it for DCIS patients because he doesn't feel it's that useful, at least at this point in time. The Oncotype test for DCIS is very new, and not a lot of studies have been done on it. I agree that it seems most useful for those with low grade DCIS, in terms of deciding whether to have radiation therapy. I believe the test is very expensive, so if it's not going to provide really useful information, it's generally not done. There is also the Van Nuys Predictive Index one can consider for the specific purpose of calculating risk reduction for radiation following lumpectomy for DCIS, though I gather not all doctors are in agreement with this approach, either. For the Van Nuys thing, you plug in different things from the MSK nomogram, including size of tumor margins.I'm still waiting for a copy of my final pathology, but when I get that I'll probably run that just to see.

But because my DCIS is not low grade (originally identified as grade 3, then downgraded after review by Johns Hopkins and after final pathology to grade 2, with comedo necrosis, and tumor size of 2.4 cm), I am not questioning whether to have radiation. The fact that it's known to cut recurrence risk by about 50%, and that when DCIS does recur locally, about 50% of the time it recurs as invasive cancer, I spent only a little time early on thinking that I might avoid radiation. For me, it seems very worth it. If I had a small, low grade DCIS, I might very well have considered skipping radiation.

kayfry · January 2015

This is interesting, Becky, that two medical oncologists recommended against hormonal therapy (is that what you mean by (f/u treatment?), even though your were strongly positive for E & P, and had a larger tumor. But I would guess that's because you had bilateral mastectomy, and because of that, your risk of recurrence of DCIS or for metastatic cancer is actually very, very low. Did they explain that they felt that because your risk is low, the benefit of that therapy wouldn't outweigh the risk? I can understand your worry, but it sounds as if you've done what you need to do to stay healthy. I hope the worry starts to leave you with time.

kayfry · January 2015

TB90, thanks for that perspective on relative risk with DCIS. I think it's hard, especially soon after diagnosis and in the midst of treatment, to keep that perspective and remain calm and rational, because BC is such a scary disease and everyone knows it. However, it's definitely not all the same scenario, one size fits all, and I'm trying to keep that in mind and consider actual risk factors in my own particular case, which is one way to quiet the fears. The thing I try to remember is that there is no woman who has a zero-percent chance of getting breast cancer, or getting it again, so we all have to live with a certain level of risk—and just living carries a certain level of risk. The other thing is that just because a certain therapy or treatment is available (like tamoxifen, for example) doesn't mean that it's risk-free. So I really do think we need to weigh the risks vs. benefits every step of the way. Which is difficult and exhausting, right? It's sometimes hard to say no to something that might give us a tiny benefit in survival, but not so hard when you really look at the SE of every potential treatment in light of your individual risk factors. DCIS may be a "good" kind of breast cancer, if one has to have breast cancer (and we all wish we didn't), but it also seems to be a complicated cancer to sort out the most appropriate treatments. Still, the fact that it's non-invasive is the most important thing, the thing I keep in my mind.

kayfry · January 2015

So yesterday I finally got a hard copy of my final pathology report. Interestingly, the estrogen and progesterone receptor analysis does NOT actually seem to show that my tumor was 10% positive ER & PR as indicated by my BS at post-op on Monday. Not being a scientist, I found it challenging to make sense of the entire 7-page report, but I had my physician husband look it over (he'd also been with me at post-op appointment), and he immediately picked up on the discrepancy re hormone receptor analysis. The report states that the % positive for estrogen cells is 1%, not 10%; staining intensity is moderate. Then it says Interpretation: positive. For progesterone receptors, the % positive is 0%, staining intensity is "none," and the interpretation is negative.

In the "comment" below on interpretation, it states that >10% is interpreted as positive, while <10% with strong or moderate staining intensity is "focally positive or rare positive cells."

On the progesterone, it's all totally negative, 0%, none on the staining intensity, interpretation "negative."

Unless we're missing something, it's not true that my hormone receptor status is 10% positive for ER and PR, but rather is only 1% for ER and totally negative 0% for PR! BS had said that 10% was the threshold for considering treatment with tamoxifen, which is why he recommended I meet with the MO to discuss this, because he felt my "10% positive" puts me in a gray area in this regard. My husband, who knows what it's like to have a bad day at the office where you're way behind in seeing patients, trying to catch up, thinks that because BS was having that kind of day on Monday (he was just back from being out of town the preceding week and patients stacked up, running at least an hour and a half behind by the time he finally got to us), he skimmed over the path report on that computer screen while also talking with us and misread the hormone receptor stuff. I guess this could be true. Even if the ER & PR were 10% positive, I think I would be declining tamoxifen, but if it's only 1% positive for ER and 0 for PR, I'm not even sure if I need to spend half a day meeting with this MO! With daily rads coming up in March, and pre-rads appointments in Feb and work deadlines, wondering if I would be okay to cancel MO in Feb?? Any thoughts?

Annette47 · January 2015

If you are sure you are declining the Tamoxifen (and with 1% ER and 0% PR I would too), then I can't see what the point of a consultation with an MO would be. All my MO does for me is provide the Tamoxifen prescription every 6 months and do a manual breast exam.

kayfry · January 2015

Annette, this is what I think. My husband felt that simply canceling the MO consult would be wrong, since BS suggested it, so I need to do something. I feel a little uncomfortable calling BS and saying, like, so did you accidentally maybe read that part of my path report wrong, as 10% instead of 1%? I love my surgeon, plus he's the top breast surgeon at Johns Hopkins, so that is awkward. So I sent an email to my nurse navigator, and that wasn't very helpful. I mean, she responded very promptly and nicely, said she will look into the hormone receptor status on my report and get back to me. But she followed that with, "However, my thought is that even with the change noted in hormone receptor status, a consult would still be in order with a breast medical oncologist, for recommendations as to what systemic therapy may be indicated."

It's not as if I don't know anything, and I know that if hormone-receptor blocking therapy isn't appropriate for me (as seems the case), there IS no other systemic therapy indicated for my diagnosis. It's surgery followed by rads, which I"m doing. Do I really have to spend half a day, driving 40 minutes each way, going through the motions of sitting in a MO office just to be told that??

I emailed back something to this effect (but nicer), and asked if it would be better if I called my BS's office myself to clarify the hormone status thing. I thought that was what nurse navigators were for.

MagicalBean · February 2015

Kay-I know where you're coming from. I am 66, and although my DCIS was small-it was grade 3 and 90-100% ER and PR +. I did the lumpie, rads, and I did decide to try the Tamoxifen. If SEs become problematic I can stop.

I was told by both my RO and MO that they don't do oncotype for pure DCIS because it's purpose is to determine whether or not chemo is appropriate. Because it is non-invasive, chemo is not a factor in DCIS TX.

We sure seem to get different opinions, don't we?

kayfry · February 2015

MagicalBean, we do, we do. To me it's beginning to look like it's, "If we can give you this other thing to possibly increase your survival rate from this non-invasive or pre-invasive cancer by one tiny fraction of a percent, then we should!" But I totally get why you would give tamoxifen a go with 90-100% ER/PR+. I would probably do the same, and as you said, you can quit if the SE's become a problem. In my case, with 1% ER+ and 0%PR+, it just seems crazy. I think it's a failure of communication, still waiting to get it resolved with my BS.

MagicalBean · February 2015

Agreed. My PA said I should take it, my RO said I didn't need it, and my MO said why not try. Considering that if 100 women with my exact dx took Tamoxifen for 5 years only 2 would benefit seems a bit extreme. This whole thing creeps me out. Rats.

have2laugh · February 2015

TB90- I found it interesting your team in Canada no longer recommends Tamoxifen for pure DCIS as my team here in Florida absolutely believes it has worth for some patients. My surgeon went as far as to suggest considering medications to induce menopause if I decided to stop Tamoxifen. I am 44 and 100% estrogen, 90% progesterone sensitive. I think we have to be careful thinking one size fits all. We all have different family history and pathology which can influence our risk of recurrence. I, too, wish there was more consensus in treating DCIS but I do fear that there is a real possibility that some will be under treated if we adopt too rigid of guidelines. That could mean no coverage for a mastectomy unless meeting very specific criteria. While that may seem like a good thing, I doubt women who were denied coverage but felt genuinely compelled that this was the best option for them physically and mentally would agree. Also, not everyone could afford the costs of close follow up sometimes required with breast conservation. I am all for guidelines and standards of care but I am not sure we have reached the point in understanding the unique facets of DCIS required to develop a singular treatment plan.

TB90 · February 2015

Have2laugh: I should also clarify that there are great differences between Canada and the US. When things are not recommended in Canada it does not mean that they then make it unavailable. If I had wanted tamoxifan, it would have been provided to me immediately. Also, the cost of close monitoring does not factor in Canada (except for a woman's time, travel, inconvenience, etc. of course). So I think things are said that mean very different things in two otherwise very similar countries. I have seen that treatments not recommended in the US are often then not funded either. And not recommended meant that they no longer "automatically" recommend it for est. positive women. Just as you stated, I am certain that they believe it will benefit some women here too.

kayfry · February 2015

have2laugh, DCIS is complicated, it seems, so there are different approaches to treatment. That makes it really hard for individual patients to figure out what's the right thing to do! And I think it's definitely true that what makes sense for some patients, does not make sense for others. For you, age 44 at Dx and ER 100%+, PR 90%+, Tamoxifen sure sounds like a reasonable addition to your treatment. For me, age 64 at Dx, and ER 1% "weakly focal positive," and PR 0%, it seems like a different equation altogether. Honestly, I'm not sure why I'm still having this conversation, but I haven't gotten a definitive answer from my medical team yet. What I do know is that my personal family history includes strokes and blood clots, pulmonary embolus and other cardiovascular events, but no breast cancer that I know of. My risk of dying from breast cancer is pretty low after lumpectomy and rads for my pure DCIS, but my risk of dying from stroke or pulmonary embolus seems not insignificant. Even "trying" Tamoxifen, given this, is concerning, because a stroke or blood clot is not the kind of SE that one can anticipate in time, necessarily. It's a real, possibly catastrophic but "silent" risk, possibly unlikely, but my question is whether the very small potential benefit to me from taking Tamoxifen for 5 years would be worth that risk?

Annette47 · February 2015

Considering that in my situation, 45 at diagnosis, >90% + for both ER and PR with a micro-invasion (so not pure DCIS) my oncologist would have been ok with my declining tamoxifen, I can't imagine that declining it in yours wouldn't be reasonable. What happened, was he laid out my recurrence risks (mostly local as the risk of distant is probably 1-2% at most) and how much the tamoxifen would lower it. The numbers in my case were 30% before rads, about 15% after, reduced to 8-9% with Tamoxifen. For me, that was worth it, but I would guess that your numbers would look quite different.

My guess is that they are recommending a consult as a CYA. If heaven forbid you did get a recurrence down the line, they don't want you to be able to say "well, I was never recommended for a consult about systemic treatment". It might very well be that a consult with a MO would result in a recommendation to skip tamoxifen.

As a thought - maybe you could call the MO's office, explain the situation and the difficulty of an in-person consult and see if they would be willing to do a phone consultation with you to at least go over your numbers.

kayfry · February 2015

Annette, the phone consult suggestion is a great idea! And yeah, it may well be a case of CYA:) Well, nothing from my BS still today, so I'm planning to email him again tomorrow. Appointment with MO is still a couple of weeks away, so I'll see how this plays out. In the end, maybe I'll decide to trek down there to the MO appointment anyway, just to lay this to rest. But it would be great to avoid doing that if I can.

OceanSky · February 2015

Found this convo by accident...

Am three month post-op with a BMX for IDC. Had a low oncotype score after a double mastectomy and recon.

Am being treating by a large university based cancer treatment center and prescribed Tamoxifen by my MO.

I have severe neuro immune illness aside from the BC but I started the Tamoxifen and had a severe neurologic reaction...Severe enough that I stopped. MO cut the dose in half and the reaction repeated.

In an office consult she explained that based on my BC and even with my low oncotype score but a large tumor...2 cm along with 3 others not taking Tamoxifen increased my risk of a new cancer (stage 4 breast cancer) to 18%. Oncotyping is based on adjuvant therapy.

I'm now trying 5mg of Tamoxifen (a micro dose) every other night without much luck...Can't take AI's due to a hysterectomy at a very early age.

Wishing more Stage 4 people would share their experience with adjuvant therapy!

kayfry · February 2015

OceanSky, I'm so sorry you're having this trouble! Hope the micro dose solves the problem, but I'm confused about how you could be at 18% risk for stage 4 breast cancer without Tamoxifen if your original Dx was "early DCIS?" As far as I know, DCIS is not invasive, so if you've had it removed via BMX, I don't understand the risk for metastatic recurrence. I must be missing something! There seems to be a long way between early DCIS and stage 4 breast cancer, from what I've learned. Since Tamoxifen is so difficult for you to take, has there been any consideration of rads as adjuvant therapy? Or is that a problem with your reconstruction?

Annette47 · February 2015

I suspect OceanSky actually has early invasive cancer, rather than early DCIS. Many people get confused about the acronyms or are diagnosed with DCIS along with IDC but focus on the DCIS part. If she really only had early DCIS, then she would have (by definition) NO risk of distant metastases as DCIS cannot spread outside of the breast. And while there is an Oncotype specifically for DCIS, it is new and rarely used - it is supposed to address how helpful radiation would be, but I haven't seen it used much, and I'm not sure that it is predicated on the use of anti-hormonals like the traditional Oncotype is, so I am guessing that she had the traditional Oncotype for invasive cancer. I bring this up not to attack her, but to clarify for people new to DCIS that it does not carry with it ANY risk of distant metastases. To progress from DCIS to Stage IV, you would need to first have a recurrence of the DCIS that took the form of invasive cancer (which can happen in about 50% of recurrences). That recurrence would then need to be aggressive enough and either not caught early enough or be resistant to treatment enough to spread, but at that point it would not be considered a spread of the original DCIS.

I'm also confused as to why a hysterectomy would rule out AI's .... but that's a different question. Usually people who have their ovaries removed (which is often part of a hysterectomy) are put on AI's rather than Tamoxifen but maybe there is something specific to her case.

kayfry · February 2015

Annette, thanks for clarifying all that much better than I did. Since being Dx with DCIS myself in December, I've had a crash course in it and knew there were some misleading statements in the post that might be scary to anyone new to DCIS. I, too, was confused about how the hysterectomy would rule out AIs, but it sounds as if OceanSky has a more complicated situation.

kayfry · February 2015

Well, I finally got the answer from my BS that led to my starting this thread! He says that based on my very low hormone receptor status as per my final pathology (1% ER+, 0% PR+) that I do not need to discuss tamoxifen treatment with medical oncology. I'm not sure why the correct numbers weren't available to my BS at the time of my follow-up appointment over a week ago, or why he missed seeing them, but it's all fine now that we're on the same page. I've cancelled the MO appointment and feel greatly relieved that tamoxifen isn't going to be part of my treatment. Since I don't stand to benefit from it, I'm glad to avoid any potential risks and SEs. So now it's just on to rads . . . simulation on 2/16, then starting the real thing about 2 weeks after that.

Hormone status, risk level, and tamoxifen

Comments

Categories