Looking for others with low risk, less than 2cm, IDC stage 1 grade 1HR+ HER2- on endocrine therapy
Are you like me? What endocrine therapy did you follow or are you following?
Pre- or perimenopausal, stage 1, grade 1, low risk, node-negative, no genetic risk, screen detected ladies, let's hear from you!
What were you prescribed and how have you changed it up over your therapy?
What has worked for you?
I've seen four oncologists with different ideas about what to take, and my current oncologist is willing to explore options. She's wonderful! But I'd love to hear from other patients.
At age 49, perimenopausal, for my birthday—so glad it was detected early—I got diagnosed with invasive ductal carcinoma in the right breast.
Stage 1, grade 1, 12 mm tumor with clear margins. No nodal involvement on MRI.
No genetic risk of cancer determined by genetic testing, and no first-degree relatives with history of breast cancer.
The tumor was detected entirely by screening—not even the doctors could feel it with palpitations, as it was deep in the breast but not affecting the muscle tissues. There were no indications the cancer was present until my annual mammogram and ultrasound, my annual standard of care for my small, dense breasts.
I had a lumpectomy with clear margins followed by 12 whole breast radiation treatments with 4 additional boosts to the tumor bed.
Sentinel lymph node dissection showed negative nodes with one of 4 nodes containing one isolated tumor cell, and all negative for micormetastasis. I understand the isolated tumor cell is controversial and not diagnostic. It might be a sign the cancer was on the move, but it also may have been pushed there by the radioactive injection they gave me that day to trace the lymph nodes for dissection.
The tumor revealed invasive ductal carcinoma with lobular features. No oncologist has said yes when I ask them if this means I have lobular carcinoma. Some oncologists are wary of the lobular features, as they indicate a potential for a more invasive disease, but nothing conclusive.
The Ki67 of the biopsy was weirdly high at 34% (two oncological professionals thought this was not accurate and had the pathology redone at different labs with the same results—might have been legitimate or might have been an irreversible staining error, the sample from the biopsy is SO small), but the tumor Ki67 was only 7%, which is low, and more to what all my practitioners would have expected. Ki67 is known to be an unreliable indicator, but it is still a data point.
Oncotype DX low, so chemo not indicated to be useful (1-2% benefit only), but showed a 6% distant recurrence at 5 years with endocrine therapy. My oncologist says she estimates this to be 12% without endocrine therapy, as Tamoxifen and aromatase inhibitors are touted to cut recurrence rates in half. Mammaprint also shows low risk (+0.005), although I understand Oncotype DX is the more accurate for this cancer. We did the Mammaprint in addition as we were hoping for an ultralow score, which would allow me to skip endocrine therapy. I have yet to discuss the Mammaprint results with my oncologist.
I am healthy, relatively active (though no athlete), have no children, and my BMI is 22 or 23 (and I have not ever been overweight, luckily, so far—I know that is not easy for many of us as we age). I am risk averse to the side effects of Tamoxifen, AIs, and the drugs that shut down the ovaries, as we all are. I am also risk averse to bone cancer and recurrence in general, like most of us.
My Breast Cancer Index states that I will benefit from only 5 years of endocrine therapy. I know I have it easy. But it is still 5 years.
The UKs National Health Service Predict tool, using the last 3 versions and chosing my best case to worst case scenario (negative nodes, low Ki67-positive nodes and high Ki67) shows at highest a 1.4% benefit at 15 years. (version 2 0.7-0.9% benefit, version 3 1.1-1.4% benefit, still in testing version 4 that takes into account smoking history {never} and radiation therapy 0.1-0.2% benefit)
Are all the risks of endocrine therapy really going to impact my recurrence rate should I choose to stop taking them if the side effects are detrimental? I need to work, my marriage needs to survive this, but so do I! I want to make the most informed decisions over the next 5 yeasrs.
Let's hear your stories.
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What did your doctor recommend? As perimenopausal I assume tamoxifen.
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lillyishere, I have seen at least 3 oncologists to discuss this stage of my treatment. So far, I have been offered everything from Tamoxifen, Lupron with Arimidex (an aromatase inhibitor), and adjuvant chemo drugs! It has been incredibly inconsistent across the board, and each oncologist says it is my choice, which is like asking a preschooler if they want to go to medical school. I do not have the knowledge to choose even though I am trying to understand why all these oncologists are so broad in their approaches.
One very quickly concluded I should get Lupron shots to stop my ovaries and pair the Lupron with aromatase inhibitors before my radiation even was scheduled. (I hesitated on this option when I found out the oncologist was retiring within the month, his office was impossible to reach, and that Lupron's toxicity limits the amount of time you can be on the drug.)
Another said a standard dose of Tamoxifen for five years, which seemed reasonable. He said there were no real side effects to speak of, except one woman he treated who felt like she might kill her spouse, so he changed her dose—yes, he actually said that as if it were an anecdote to laugh at! On my way out of the office his nurse handed me a list of side effects and contraindications and said, with wide eyes, that I needed to read this and reach out if I had questions, as the side effects had potential to be substantial.
The third, who I am staying with, is much more scientifically minded. She agreed with me we should get more information on my menopausal status before prescribing, has done multiple blood tests, and agreed to get the Mammaprint so we could compare Mammaprint to Oncotype DX in relation to adjuvant care options. She explained I have options to take nothing, take Tamoxifen (including low does Tam), or shots to deaden my ovaries along with aromatase inhibitors. She also is very keen on current literature and gave me printouts to read on a few chemo drugs to layer on to these treatments that can reduce my already small risk. She is very into reducing risk, which is excellent, but I worry about swallowing too many spiders to catch a fly.
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I’ve been in a similar situation to what you’re experiencing now. Tamoxifen is a single medication and generally easier to manage. However, due to my predisposition to blood clots, I was advised to go with Plan B: Lupron combined with an aromatase inhibitor.
If you’re not menopausal, Lupron can be very challenging—it certainly was for me. On top of that, the aromatase inhibitor adds its own set of side effects, essentially doubling the impact. I did Lupron shots for four months but eventually chose to have my ovaries removed because I couldn’t tolerate Lupron any longer.
If I were in your position, I’d start with Tamoxifen. Once you reach menopause, you can consider transitioning to an aromatase inhibitor. That’s just my personal experience and thoughts, but others may have different perspectives to share.
Better to start with one medication than juggle two at once. Let us know what you decide
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Hi @kitty75 , I'm incredibly impressed at your research and knowledge. I was diagnosed with DCIS in Nov24,(not IDC) and have been reading everything i can since then too. I haven't come across the tests you cited to understand your reoccurance rates etc, but yet to see an oncologist so will be asking.
I'm perimenopausal still (i think - i have a merina IUD) and on HRT. The impact of going from HRT to being on tamoxifin to me seem extremely harsh, and difficult to manage. Especially when low grade. I'm not opting for further endocrine therapy (even though receptor positive).
I read a book called Oestrogen matters and this really gave me a bit of insight on the effect of hormone blockers on your body.
I'll be following this thread to understand what advice those in a similar situation provide. Also, I'm interested in hearing what you learn and decide, so keep us updated.
All the positive vibes to you, there's so much conflicting advice - especially when you start to look at the reality of the side effects vs your own quality of living.
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I was diagnosed with Stage 1, grade 2. 11 mm tumor. I had a lumpectomy and 5 accelerated radiation treatments. Nodes were negative as well. I was perimenopausal at the time of diagnose. I have since had a full hysterectomy. I had that about 4 months after. I started tamoxifen and still on tamoxifen. My oncologist plans to keep me on tamoxifen for another year and switch to an AI. I have not had any real problems with it. I do get leg cramps and my joints hurt a little in the morning, but nothing that I can't deal with.
Both my Ki67 and oncotype was low.
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Thank you all for sharing your stories and insights!
I spent quite a while with my oncologist Monday and didn’t really come away with more information, but we did decide that some kind of endocrine therapy might help, even if it is a small bump in prevention. My oncologist said that with some kind of endocrine therapy we could improve my chances of recurrence (both “distant” metastasis in another part of my body and “local” with a cancer again in my right breast) to less than 10%. The data the genomic tests (Mammaprint and Oncotype DX in my case) is spread out over different time spans (5-10-15 years), but the tests report 6%-9.5% chance of recurrence with endocrine therapy for five years. That is still pretty low! I wish the tests also told you the chance WITHOUT endocrine therapy, but I think they are worded to encourage you to take the stuff.
The oncologist says if we posit that drugs like Tamoxifen cut recurrence chances in half, then my chance of recurrence is 12-19%. Still low, but…
So we determined to start on the 5 mg dose of Tamoxifen for a month, otherwise known as “baby Tam”. This is approved for ductal carcinoma in situ (DCIS), but not for my condition, which is invasive ductal carcinoma (IDC). If I tolerate it, she wants to bump the dose to 10 mg in March. Ten mg doses have been better studied for the 5 years for both DCIS and IDC. But 20 remains the gold standard. The idea seems to be something is better than nothing if you can take it.
There is a study going on right now to determine the efficacy of baby Tam for IDC, but it concludes in 2030, and results won’t be available within my 5-year window. I say 5 years because I have already gotten my Breast Cancer Index (BCI) test done (which cost me $1000USD out of my own pocket, but is worth it to know!)—this isn’t usually done until year 4 of endocrine therapy. It tells you if you need to continue therapy for 10 years, or if you can stop at 5. It is a test of your tumor, so there is no reason not to get it tested earlier if your recurrence rate is low. My BCI says I can stop at 5, or, as determined by myself and my oncologist, I can look into 2-3 years of Tamoxifen, both of which have been studied and are promising.
I really don’t want to be on the full 20 mg dose of Tamoxifen, which is associated with many more side effects, including those that outlast your prescription like cataracts. I may switch to aromatase inhibitors in two years, but I understand these are harder to live with, even though the more dire side effects like cancers and cataracts are removed from the list. My oncologist is also is offering some of the tamer chemo drugs as another option. Those are equally frightening! But I know she keeps up with the latest research—we read the same papers from the San Antonio conference now!—and so I trust her. I think becoming educated about all this has helped her trust me.
It is all A LOT to take in and ponder. The good news is you can (and I can!) see how I feel on these drugs and opt out or change them up. Don’t let your medical care team tell you there are not options. I was told that by a few oncologists who wanted to put me on Tamoxifen with a full dose and said there were no side effects (!) or on Lupron and aromatase inhibitors, which seemed drastic given how low-risk my case is and how toxic lupron is. (If it worked for you, I am so very glad.)
No doctor has suggested removing my ovaries or uterus. In my case, it seems the potential complications with those surgeries is not worth the risks, as my case is manageable with endocrine therapy, and that therapy is optional.
It is still a stressful decision! I would love to not have to take endocrine therapy drugs. I feel my risk is low—on par with an average western woman’s risk of breast cancer. I can live with that. But I agree with my oncologist, if we don’t see if I can tolerate the drugs, we won’t know if gaining an advantage was possible. And the drugs I would need to take to try to beat a recurrence are no picnic compared to endocrine therapy.
My oncologist continues to do blood tests each month to see where I am with menopause. It is tricky, as this isn’t well studied in our male-centered world, but she thinks I am indeed post menopause. Time will tell.
So I feel stuck with trying. It is all exhausting! I will start tomorrow, and to try to give the drugs the fairest playing field I have quit caffeine (which is meant to make hot flashes/flushes worse). That is making my early work day drag, but I will see if I can add my favorite cuppa back in as soon as I feel comfortable with what the drugs are up to.
Has anyone been told body size/weight matter with Tamoxifen or endocrine therapy drugs? I am 5’3”, 124 lbs. Not tiny, but smaller than average. I found a few discussion forums where women had mentioned their size and that doctors had changed doses based on body size. But that isn’t in the literature out there. Please keep sharing your stories and insight!
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Hi kitty75
Your situation is similar to mine. I am age 47 (Sept 2023)at time of diagnosis and also thru my annual mammogram with small extreme dense breasts. I am also pre/perimenopaual with PR/HR+ Her2-, grade 1, stage 1 with 13 mm clear margins with no node involvement. I received same as you, lumpectomy with 16 sessions of full breast radiation and 4 boosts. From what my 2nd oncologist explains, the oncology DX score is base on you taking the full 20mg dose of tamoxifen. She too wants me to start on the 5 mg to see how it goes. I have suffered a lot under the lupron shoot in 2024 and still have lingering side effects, mostly my mental state. As such, I have not started the 5 mg of tamoxifen. The few times that I did try, it was when lupron was still in full affect in my body. Those were not good days. Each time I did try tamoxifen, it took about a week for it to work itself out of my system. I only took it for a day, no more than 2 and the impact was impactful to me.
I am glad that the nurse gave you something to read in regards to tamoxifen cause my original oncologist also did not say much in terms of side effects on either lupron or tamoxifen. And believe me when I say, I wished someone did. So for the past year, other than lupron (active for 6 months), I have not had any type of endocrine therapy in me. I also did not have a clean MRI in August 2024 but had a clear mammogram. I do want to switch the MRI to ultrasound, but it does not look like my cancer center or my gynecologist have recommendations for ultrasound as both want me to continue with MRI. But best of luck on your decision.
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zen1028, you and I are almost tumor twins! How is it going for you?
Summing up: I seemed to do ok on 5mg Tam, but went to 10 on trial, and got slammed with night sweats and hot flashes (at least 12/day), as well as constantly hot hands and feet along with burned-feeling forearms—and crippling scalp issues. So I went back to 5 mg and will report back in a few weeks to let o know how that is going. I’ve also set up an appointment with University of Washington oncologists for June.
Good news first! I’ve had consistent pain and heavieness in my breast since survery. PT helped, but only massage PT. Stretching and movement didn’t improve the pain or discomfort (but has been essential for my range of motion). I stared using silicone scar tape as if it were KT athletic tape on the lower portion of my breast where the pains were, basically on top of the scar tissue. Brilliant! No more pain! I tape all day and leave it off at night. Please share with others—no one told me to do this, but this has been a game changer in my daily life! Cheap, comfortable, and easy. I will be mentioning it to my PT who I think will love it.
Back to hormone drugs: I started the 5mg Tamoxifen in Jan/Feb with no side effects, except perhaps a few night sweats. At my oncologist’s urging, I switched to 10 mg Tamoxifen/day in March. By the end of the month, the night sweats became disruptive and I started getting classic hot flashes at a rate of 12/day. I carry a hand counter clicker now to count them throughout the day and night. I never had those before Tamoxifen, and my mother never had them. Our mums’ menopause experience is meant to be like our own, more or less. My sister is a menopausal wreck, however, so perhaps that standard is not true. There is a chance my hot flashes are just menopause. But given the fact they happened concurrently with the increased Tam dose, I think it is all the Tam. On March 31 I went back to the 5 mg dose with my oncologist’s blessing. I see her again at the end of April.
I have had a few other side effects of taking the 10 mg tam. I’ve had 3 days now (as the 10mg dose takes 2 weeks to flush out of my system) of “hot hands” and feet. The palms of my hands and bottoms of my feet are hot and clammy 24-7. In addition, the skin on my forearms feels sunburnt! I live in the Pacific Northwest and it is the rainy season—this isn’t a sunburn. I have a very pale complexion, so it is easy to see when my skin flushes and is red. My palms are glowing red, but there is no discoloration on my feet or arms. My only other “bothersome” symptom is a return of painful dandruff that has been associated with yeast in my past. Usually a little over the counter medicated shampoo and upping my oral vitamin D supplements takes care of this, but this bought has been more stubborn. Hormones can affect the sebum in our scalp, so this is most likely a real side effect, not just me being paranoid.
I am hoping returning to the 5 mg dose will bring me back to just a few night sweats, and that those will go away as my system gets used to things. If they persist, perhaps I can follow the advice I see lots of oncologists giving women to stop the drugs for 4-6 weeks and start again, the human equivalent of unplugging the computer and plugging it in again.
*Side note: My oncologist said, at my second visit in February, something that surprised me. Despite my genetic Breast Cancer Index test clearly stating I would not benefiet from more than 5 years of endocrine therapy, my doc said I could do 10 years of Tamoxifen or 5 years of AIs, but intimated that 5 years of Tamoxifen was not enough! This runs contrary to everything I have read, but the poor woman was rushing out the door to her next patient, so I did not get resolution. Thus the appointment at the University of Washington—I want to get to the bottom of that. I am not prepared for 10 years, but need to know if I should be. My oncologist’s practice is overly busy, and I’m also covering my bases just in case she becomes less and less available.
I did speak (finally!) to an oncological nutritionist! Bottom line: food, as far as we know, is unlikely to be behind the cause of breast cancer or breast cancer recurrence. (Other cancers, such as bowel cancer, are, so stick to healthy diets where you can! But please, once cancer at a time. This is all alot!) She was helpful in explaining that the recommendations to avoid “processed foods” really only pertain to synthesized proteins. Hightly processed foods were the only foods loosely linked to breast cancer. I’d heard everything from “eat only raw foods” to “just avoid Doritos”, which made no sense. Ultraprocessed foods are easy for me to avoid, because I love to cook. Eating doritos or oreos every now and then will not harm you. Just don’t make them what’s for dinner 5 nights a week.
You will also get a lot of “don’t eat hot dogs, bacon, or salami!”, but those things are perfectly safe if they don’t have added nitrates and nitrites (illegal in the UK, legal in the US). And even then, unless you are eating bacon and hot dogs daily, you are ok.
As for alcohol, the jury seems to be out, but general guidelines of 1 drink a day or less is a good baseline. That said, for my situation, drinking 3 flutes of champagne at a wedding or having a big tiki night with lots of rum every now and again will not impact my chances of recurrence. Although I have found studies that say alcohol makes Tamoxifen not effective, no practitioner has mentioned these. Many of us go off Tamoxifen to have kids or to mitigate side effects, so if alcohol does inhibit tamoxifen a few nights a year, we should be ok. It is helpful to know we can carry on with normal socializing or our evening glass of wine if it brings us quality of life. Check with your docs, still. But there isn’t one culprit that causes what we’ve got. For full disclosure, I did not drink until my 30s, and then only socially or with meals. I missed what many of us do in our youths with alcohol, and am lucky to not have alcoholic tendencies that so many of us struggle with in the western world. In my case, alcohol is an outlier for cause and effect.
I’ve still got questions about the studies on coffee and aspirin potentially amplifying the medicinal aspect of Tamoxifen. ON the 5 mg, that seems like a great thing to take, considering my personal medical history has no complications with coffee or aspirin, if the studies are ones we can trust! Check with your docs before you take aspirin or add coffee to your diet if it isn’t already there. Caffeine can make Tamoxifen side effects worse.
And I’m also pressing my docs to find out if we can test my blood for endoxifen, which is the thing Tamoxifen metabolizes into. Some studies suggest that people who are not metabolizing endoxifen get no benefit from Tamoxifen. My oncologist’s nurse had not heard of the test, so it might not be one that is easy to access. Ask about it!
I’ve also signed up to see an oncologist at Fred Hutch Cancer Center associated with the University of Washington. They follow the NCCN cancer treatment guidelines, which I will see how that plays out in their recommendations. That appointment will be in June. I am looking forward to having a cutting-edge opinion on my recurrence risk and adjuvant care options.
Keep sharing what is going on with your lovely selves! And remember, this is not a journey, it is a detour. A very crappy detour!
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