Papillary DCIS Treatment Questions
Hi All - I was here 13 years ago with low-to-intermediate DCIS with 1 mm microinvasion. I had lumpectomy and whole-breast (4 week protocol) radiation. No breast cancer genetic markers or family history, so I thought one and done. Not so much. At my 12th mammo, an 8-9 mm oval tumor was discovered in the same breast. No reason, just luck. Not a recurrence; the first one was cured. This was a new primary and a different type - papillary; apparently the laziest, slowest growing BC you can have. Removed with lumpectomy 9-10-26, found to be all papillary DCIS, intermediate grade, very ER+. Can't have rads again, and seeing how slowly previously radiated skin has healed though it had looked and left fine, don't want it. I am undecided about whether to take Baby Tam (5 mg. as opposed to the usual 20mg. of Tamoxifen). I can't take regular AIs because of already painful arthritis, and 20 mg Tam comes with some uterine cancer risk, among other possible unpleasant side effects (still possible joint pain, blood clots, etc.) Apparently, for DCIS and very early BCs, the Baby Tam cuts recurrence as much as the 20 mg. I have uterine scarring from ablations, which can mask the possible uterine lining issues/cancer with Tamoxifen. But they say that with the 5 mg. as opposed to the 20 mg., the uterine cancer possibility is not more than with a placebo. The margins were good (2-5 mm) all around. The cancer is the least aggressive. I was told Oncotype testing is only for invasive cancers (so not told the truth) but now see here on this site that there is an Oncotype test for DCIS, not just invasive cancer. The results of which will help me decide whether or not to take the 5 mg. Tamoxifen. Does anyone here have any experience/ opinions about any of this? Never thought I'd be back here again. Thanks.
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Hi @percy4, we're so sorry to hear of the worries that have brought you back here again. We hope some of our members can chime in on their experiences with small dosages of Tamoxifen (also called "baby Tam" on these boards!), but in the meantime, it may be helpful for you to browse through the following older discussion thread from our community members on 5mg Tamoxifen.
You can also discuss further with your oncologist your interest in getting the Oncotype test for DCIS, to assess your personal risk of recurrence. However, since you mention that radiation therapy is not recommended for you, your insurance provider might deny coverage for this test since it is typically used to weigh the benefit of adding radiation therapy for DCIS treatment.
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Thanks so much. I am hoping my insurer will cover the test as, even though it is usually used for radiation assessment. since I can't have radiation, I can use it for recurrence assessment, and therefore it can tell me the value of taking the Tamoxifen. Worth a try; things are sometimes used "off-label", so to speak. I will file a grievance if they deny, and will let all know how it goes. I think I have a good reason. After all, what difference should it make WHY you want to know your recurrence chance, if you are using that to decide on some kind of further treatment?
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You were right. Oncotype DCIS denied BUT not for no reason. I was initially upset when he said "NO, this test for DCIS was meant for deciding about radiation" and I told him it sounded like "Just…because". When he went on to explain to me that the Oncotype DCIS test has only been studied and assessed with the supposition INCLUDED that the woman is having endocrine therapy, it then made sense to me that the test would be of no value to me about deciding bout Tamoxifen. I do have to add, as I told him (medical oncologist) and he actually agreed, that studies should have been done for Oncotype DCIS JUST about recurrence chance, with or without endocrine therapy. But they haven't. Thank you so much for your interest, and I hope this information helps someone else. My own issue with taking even Baby Tam is I have an incredibly scarred uterus from previous ablations, we are monitoring that already, and how would we handle a uterine lining issue caused by even Baby Tam so…. that's one of Tamoxifen possible side effects. I will be consulting with my wonderful OB/GYN to ask how she would monitor my uterine lining with my previously existing condition there, if I took the Tamoxifen. Love to all. Not happy to be back here, but such a wonderful place to have. - Sara
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@percy4 we are happy to have helped somewhat, even if your insurance denial wasn't the response you were hoping to hear. Since you have valid concerns about the possible side-effects/ risks from taking Tamoxifen or aromatase inhibitors, it may be worth asking your oncologist whether you would be a candidate for trying one of the newer oral SERD hormone-blocking therapies, such as Giredestrant, instead? Giredestrant is pending FDA approval later this Fall, and it, and other similar oral SERDs, are currently being evaluated via clinical trials. These oral SERDs, if available to you, may hopefully be easier for you to tolerate.
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I've made my decision. My estimated recurrence chance with no further treatment is about 7% over 5 years, 11% over 10, minus 2-3% because of the type it is papillary, also known as lazy BC, even a little less as I am 69 and cells divide less quickly at my age. So with a 50% possible reduction in recurrence/new primary, that's 4% over 5 years, 6 over 10 years with the baby Tam (and then taking off a further 2% because it is papillary, but maybe adding 1% as it happened twice). So, all low. It has been scientifically proven (I checked with 3 oncologists) that losing 20 pounds, abstaining from alcohol (except for very special occasions, say, 10 times a year) and making sure to get 150+ minutes a week of brisk exercise cuts recurrence/new primary (the alcohol abstinence more to do with new primary; important to me as this last WAS a new primary) by up to 40%. So, with the careful monitoring they have been doing for years because of my 3 times ablated uterine lining, and even though uterine issues are less with the lower dose tamoxifen, they can happen, and we then would have no tissue to work with to mitigate possible issues in uterus, as it's all scarred. I am choosing the lifestyle changes over the endocrine therapy of any kind, even baby Tam. 40% reduction is almost as good as 50%, since absolute reduction either way is in the single digits. This was my plan after my first BC; I just didn't do it. I gained weight rather than losing it, I did not stick to a good exercise (brisk walking, incorporating stairs, is enough) regimen, and I continued to be a regular drinker (not heavy, not light). I see what that got me, so 13 years and another BC later, this time I will really keep up the lifestyle changes. Wish I had done that after the first time. I really believe this second low-grade cancer would not have occurred if I had. I am older and wiser, now. And I don't want to worry about my already monitored uterus with taking Tamoxifen of any dose. Thanks for listening. A word to the wise. I implore you to take the desired weight, very low/no alcohol. and exercise into consideration , at least with DCIS/low grade BCs. I wish I had been more mindful, but years passed and I didn't think about it any more. Please keep up the lifestyle changes you make, and I will let you know how it goes. Right now I am having trouble getting a second opinion of my pathology (a legal right). Medical oncologist said sure, no problem, we'll do it again (as there were mistakes in margin size in 2013) and then sent me an email an hour later saying he and a colleague looked at my slides under a microscope and saw no invasive disease and "hope that allays your concerns". Mo mentions of confirmed margins, my biggest concern. I had asked for and was told I would have a true second opinion, meaning doing the path again, and that's what I am going to get when he returns from vacation. I don't know what happened in between him saying fine to a second opinion which would show on my path report as added (it doesn't) and them deciding to just "take a quick look" (not recorded in my records in any way) but that is what happened and that is not a true second opinion of my path and believe me, not going to fly. Love and courage to all. - Sara
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