Looking for others with low risk, less than 2cm, IDC stage 1 grade 1HR+ HER2- on endocrine therapy

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.

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!

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!

Reporting back in a few months later to follow up on how exemesthane worked for me!

My oncologist at Fred Hutch assured me that among aromatase inhibitors, exemesthane was the best—the most effective with the least side effects. I went into my trial of exemesthane with great hopes for success and a good deal of optimism.

I also went in with open eyes and an understanding of what side effects to look out for. Sadly, they hit me like a wall. I started the drug in early July and stopped cold August 9. I took the full daily dose, and my oncologist determined, given my side effects, that any smaller dose would be just as detrimental. It is said that the third AI one takes is meant to be most tolerable, but I think this is because by the third prescription you are already so devoid of estogen you don’t feel the side effects so much? I am 50 and experienced menopause somewhere between 48 and 49. Apparently being newly post-menopausal can also influence the severity of effects. And wow, am I the poster child for side effects!

My side effects included neuropathy (lack of feeling and pins and needles) in my hands (which is rare) and thinning skin within the first week (I kept skinning my knuckles doing routine, soft chores like folding the laundry). I also had a persistent runny nose, fatigue, and the start of depression. I developed hand pain every evening, with trigger fingers each morning. My hands were swollen so much I felt I could not hold a pencil or a steering wheel, and the the trigger fingers were very uncomfortable. This would wear off during the day, mostly with a hot shower. I started bruising easily. Night sweats and hot flashes during the day returned, though not as bad as with Tamoxifen. Insomnia, diarrhea, and an aching left ovary combined with a general weakness in my hands and hip pain followed. My jaw began to pop, something that it had never done before. I contracted angular chelitis, a fungal infection of the lips sometimes associated with cancer treatments. I suppose due to low white blood cell counts. This traveled to my ear lobe before I got it under control with OTC fungal lotion. Painful but not noticeable or catching for others, thankfully. Never had it before in my life. I was also becoming quite anxious about bone loss given that I was experiencing so many side effects. Not all of us have bone loss on AIs, but with my osteopenia, I was worried. And anxious that for 10-20% of women, bisphosphonate injuections fail to rebuild bone. To add insult to injury, I thought I had contracted a UTI, which is common on AIs, but it turned out to be a phantom one with no infection. It is OCtober 16 and I still am having this side effect. I have a referral to a urogynecologist, as my oncologist couldn’t quite address the odd symptoms I was experiencing (which I only feel on my left side, for some odd reason). It is a constant urgency in the pee department that, at its peak a few weeks ago, was near incontinence. I have been managing it with NSAID over the counter drugs as needed. As of today, everything but the hands and phantom UTI have cleared up. I am getting compression sleeves for the day and braces for the nights to see if I can’t help alleviate these symptoms. My oncologist believes this will clear up. In some cases, damage like this can be permanent or result in the need for trigger finger or carpal tunnel surgery.

So, I did stop the drug and am now not on any cancer prevention anti-estrogen drugs. I can still elect to try a new AI should I choose, but so far the impacts on my quality of life have been extreme considering I have a 8-12% chance of recurrence in the next 9 years. I do understand that recurrence rates go up as we age, but we are learning more and more about that with precision oncology. But I also bear the weight that in oncology, even 1% is significant.

DO NOT STOP TAKING YOUR MEDICATION without telling your oncologist. This is not an endorsement for anyone to discontinue care. I had to weigh the potential damages to my body against a low risk of recurrence. Your risks are different to mine, no matter how similar we may be on paper. But DO TELL YOUR ONCOLOGIST if you suspect any new thing you are experiencing to be a side effect of your medication. Your situation may be that it is fine to risk the need for hand surgery (which can be very simple and routine) against cancer recurrence! I simply did not feel it was right for me. I was disappointed my oncologist didn’t offer more support for prolonging my anti-cancer medication. Perhaps it is because of the multitude of side effects I had that made her pause. The oncologist-heamatologist I saw for a telehealth visit within the practice of my regular medical oncologist did not think it would be advisable for me to try a lower dose or really to ever take exemesthane again. She did, however, give me a letrozole prescription, should I choose to try another AI. At the moment, that sounds too much to bear, given that even months later the sidwe effects from July still cause me daily pain and discomfort. We are fighting cancer here, but quality of life also matters.

I am about to start a PhD at 50 that will span global hemispheres. I have a low risk of recurrence, despite the numbers adding up over time. I also am stying abreast of technology and medicine that is evolving. Liquid biopsy may, in a few short years, be able to help us know better which of us are at risk of recurrence, which for hormone positive cancer is still a mystery. I will continue to get my mammograms, scans, and ultrasounds, as well as my physical exams. And I will exercise and take care with my diet and minimize my alcohol intake. I am deeply disappointed I was unable to tolerate exemesthane and tamoxifen. I envy those of you who find it tolerable.

I continue to urge you to find oncologists who understand you and work with you. Mine is good but not as helpful or encouraging as I would like, but I stay with this one as her staff are very useful and her clinic on time and state-of-the-art. Just once I would like to have an oncologist look me in the eye and say: “Your case is low-risk. Here are your options. This is what I would do.” Ironically, the very first oncologist I saw just as I was moving away from the city he practiced in was the most helpful that way. He said I most likely got this cancer because menopause caused my estrogen to spike trying to get my ovaries to release the eggs that were not there. This is conjuncture. But it helps frame the disease for me. I have no genetic or lifestyle factors that predispose me to breast cancer that we know (and correlation isn’t causation, so don’t be fooled!). He said I’d be fine. U’d have surgery and take some pills, and I’d be good. He as a very kind man. I hope he was right. He seemed very assured this was going to be the case. Make sure your oncologist is there for your whole person. You are one of a kind, and deserve the best care, no matter your diagnosis. That matters at the end of the day. You need to feel human and respected after you've been to to doctor. Make sure you get that experience. And do something nice for yourself today. Get off this site and go be alive!