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Rejecting hormone therapy

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  • threetree
    threetree Member Posts: 1,157

    Racheldog - Glad to have been of some help! At least you picked up your prescription. Mine sat at the pharmacy for two months before I finally went to get it. They had put it back and had to fill it all over again, because I hadn't been in. The oncologist didn't like my waiting at all, but I just had to. I do "go rogue" every once in awhile re things she wants me to do and she just doesn't like it at all. She wants FDA approved this and that and "standard of care" to the letter, but sometimes, I just have to go off track a little. Overall I've done everything they suggested; chemo, surgery, radiation, and the AI, with just a little sidetracking here and there just for my own mental health if nothing else. This oncologist though wants everything by the book and absolutely no deviations.

    I do hope you have a really nice Thanksgiving and Christmas and continue to do well with your treatment.

  • KateHanni
    KateHanni Member Posts: 70

    Beesie, you make a great point about the MO's not going over the distinction between a distant recurrence and local recurrence. In addition, and I don't know how to quantify this to my situation which has been truly alarming, my Oncotype DX score was 17 and my risk of distant recurrence was 5%. Caught early, no spread to lymph nodes, no mets. HR+ etc.

    What we are experiencing here where I live is a very tight situation with MO's being completely overwhelmed with new cancer positive patients. These patients have avoided going into medical settings due to COVID 19 and so once they are diagnosed their cancer is showing up, in general, as more advanced. According to my surgeon Dr. Victor Zannis he's seeing 5x the number of positive breast cancer patients than he saw prior to COVID 19 and they are not doing in patient procedures anywhere here it's all outpatient to keep the non covid positive patients away from the COVID positive patients. Why do I bring this up? Because in my opinion the bandwidth of MO's right now is so taxed that I get almost no information and must do all of the due diligence myself which is quite alarming. We moved to Prescott AZ last November, and I still cannot get a General Practitioner here and had to keep my long distance PCP in Oregon until I can get settled with a PCP here which may take 2 years. The other issue is that nurses and even MD's are leaving the profession altogether so I think those of us with Cancer are left on our own to figure out things that normally would be explained. It's awful.

    I just began my first Letrozole today and am hoping my side effects are not awful like they were on anastrozole and exemestane. IF they are then I go to tamoxifen which ironically I already have on hand as my MO anticipated this was where I was headed due to too many side effects that I could not tolerate.

    Quite a journey cancer...


  • Kate, each of the 3 risks is separate, and while it should be your MO who goes over this with you, you can use the information you have to try to come up with estimates.

    You said that your Oncotype score is 17, which translates to a 5% 9-year risk of metastatic recurrence. This 5% risk assumes that you will be taking an AI. Since there is a lot of research that suggests that AIs reduce metastatic risk by approx. 1/3rd, you can do reverse math to determine how much risk reduction benefit you are getting from the AI and what your risk would be if you were to not take the AI. The reverse math calculation comes up with a 7.5%, which means that you are getting a 2.5% risk reduction from the AI. (The math: 2.5% is a 1/3rd reduction off 7.5%, giving you a 5% metastatic recurrence risk when you take an AI.)

    As for your local recurrence risk, this one is harder because even for similar diagnoses, the risk can be quite different depending on surgical margins, single vs. multiple foci, obvious things like grade and the aggressiveness of the cancer, etc.. Because there are so many variables that affect local recurrence risk, there aren't studies (that I've found, anyway) that provide reliable information for any specific case. As I said above, from the studies I've read, generally the average local recurrence risk is in the range of 8% to 12% but it can be as low as 4%-5% and as high as 40% (or higher if there is aggressive cancer in the margins). The best I can suggest here is the "IBTR! nomogram" from Tufts, which was discussed earlier in this thread. I have no idea how reliable it is but it's the only local recurrence risk estimator that I know of. This nomogram estimates local recurrence risk with and without radiation and it allows you to enter whether or not you are taking an AI (also chemo). So playing with the model and putting in an AI first, and then taking out the AI will allow you to see how much local risk recurrence reduction you get from the AI. https://www.tuftsmedicalcenter.org/ibtr/

    Lastly, there is new primary risk. My first MO told me that on average our risk to develop breast cancer again is doubled once we've been diagnosed a first time. Studies run the gamut on this - some suggest little to no extra risk after a first diagnosis, others suggest a 3 or 4 fold increase in risk. The study I linked above (and again below), which breaks out recurrence risk by hormone profile, suggests a 2-fold increase for those with a hormone positive first cancer, and a higher risk for others. So for ER+ cancers, I default back to what my MO told me 16 years ago, which is that the risk of a new primary is approx. double that of someone the same age who has never been diagnosed.

    I know from another post that you are 60. The average 60 year old has a 10.6% remaining lifetime risk (see chart below; add together the 10 year risks for age 60, 70 and 80). Doubling this would equal 21.2%. A 50% reduction in this risk (which seems to be pretty consistent from the studies of AIs) would be significant - 10.6%. But it's important to note that this 21% risk covers a 30 year period - and 5 years of an AI will not likely provide a 50% risk reduction benefit over the whole 30 years. The benefit will extend beyond 5 years but how much? Studies vary. But if we say that the full 50% risk reduction benefit from an AI goes on for 10 years if you take an AI for 5 years, that would cover your 60s and would provide a 3.5% risk reduction (of your doubled risk). One additional side note. While I prefer research to anecdotes, I will say that in my 16 years on this site, I have seen a lot of women who were diagnosed under age 50 or even 55 who have returned with a new primary breast cancer after 10 or 15 years. I have not however seen very many women who were diagnosed at 60 or 70 return with a new primary. So this suggests to me that while "double the risk" might be accurate for younger women, it might over-estimate the risk for those diagnosed a first time when they are older. The study I posted earlier confirms this: "For women with a first HR-positive tumor, there was an inverse trend with age at diagnosis, with risk of any second primary cancer highest when cancer was first diagnosed before age 30 years (SIR = 43.8, 95% CI = 27.1 to 66.9, AR = 19 per 10 000 PY), declining statistically significantly for age 30–39 years (SIR = 7.39, 95% CI = 6.37 to 8.53, AR = 13 per 10 000 PY) and dropping to SIRs between 1.0 and 3.0 thereafter. This trend by age was observed irrespective of HR status of the second tumor." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC27209...

    image

    So, with varying degrees of reliability, it is possible to estimate each of the 3 risks that an AI or Tamoxifen can help reduce. The most accurate estimate is for distant recurrence, for those who have an Oncotype score. What's important to remember is that these risk reduction benefits are not cumulative. A 3% risk reduction for metastatic risk, plus a 3% risk reduction benefit for local recurrence risk plus a 5% risk reduction for new primary risk doesn't equal an 11% risk reduction benefit. Each risk, and therefore each of these risk reduction benefits from endocrine therapy, is completely separate, although you need to look at all of them to get the total picture of how much benefit an AI or Tamoxifen will provide.


    And in the end, this should be a discussion we each have with our MOs. For MOs who don't bring it up, one option is to go to the MO armed with this information and your own calculations, as a way to get the conversation started.



  • azryder1
    azryder1 Member Posts: 1

    Thank you. I have been through quite a bit with two lumpectomies, a sentinel node biopsy (negative) 15 radiation treatments for the very small amount, but aggressive, cancer found. Just came off of Arimidex because of the horrible bone and muscle pain and a host of other side effects. Was only on it for a month! I am 72 years old but aVERY active long distance cyclist and fitness instructor. I am fit and do not want to give up the next five years to pain.

    Arimidex made me feel older than my age and I do have Osteopnia. I am really leaning towards no Hormonal therapy because of the side effects and quality of life. I have very assertive Oncologist. I am seeing her this afternoon to chat and then plan to get a second opinion.

    Thank you so very much for all of the information you have posted as it has given me strength through knowledge. It is wonderful to have this incredible forum.

    Not ready to give up living yet and would rather have the active life even with the risks involved.

  • moderators
    moderators Posts: 7,683

    Dear Azryer1,

    Welcome to the BCO community. We are very glad that you reached out to share your story with our members. We hope that you will find support and helpful information here. Keep us posted on how your appointment went today. We are all here as you need.

    The Mods

  • pamep
    pamep Member Posts: 66

    Beesie, while I am nowhere as knowledgeable as you regarding BC, why did you add the probabilities together to arrive at the new primary rumor rate for a current 60 year old?

    I am seeing that the discontinuance of tamoxifen or AI's after so many years increases risk. https://mfprac.com/web2021/07literature/literature/Oncology/BreastCA-Aromatase_Pan.

    I understand why we are not compliant with tamox/AI's. I am there too. What to do?

  • Pam, the risk to develop a new primary remains with us for the rest of our lives. In the chart, each of the risk probabilities cover only a 10 year period, i.e. they represent the average woman's risk from ages 60-69, ages 70-79 and ages 80-89. Therefore to calculate 'remaining lifetime risk' for a 60 year old, you have to add together the risk probabilities for each of these 10 year periods. That provides a risk estimate for the rest of one's life, from age 60 to age 90.

  • lillyishere
    lillyishere Member Posts: 769

    Ladies, do you have any SE of swollen lower legs from letrozole? It is been almost 4 months since it started very slowly but now I can feel it and see it more than before. Anyone else?

  • I wouldn't use the word "swollen" to describe my lower legs but I have these weird fatty deposits that have developed since I've been on Letrozole. To me, it appears to be similar to the start of lipedema. Lipedema is not a listed side effect of Letrozole but lipedema can be triggered by changes in estrogen levels, so it seems reasonable to me that Letrozole is the culprit.


  • lillyishere
    lillyishere Member Posts: 769

    Beesie, I can't see any fat deposits on my legs, and I am getting concerned because it looks like edema. Can it be because of the liver, or heart or just letrozole?

    Have you asked your MO about lipedema?

  • Yes, I asked my MO. She said she hasn't seen it before but estrogen affects so much in our bodies that it's certainly possible.

    Swelling of the lower legs / peripheral edema is a listed side effect of Letrozole: https://www.drugs.com/sfx/letrozole-side-effects.html If you scroll down to the Healthcare Professional section, peripheral edema is listed under "Other" "Common (1%-10%)"


  • bitchonwheels
    bitchonwheels Member Posts: 15

    I started taking Anastrozole January 1, 2020 and did fantastic with no side effects until March 2021 when I developed such severe joint pain I could barely walk. I was 61 and have bad knees but this was sudden and awful. I took a 3 month break with much improvement and am taking Letrozole every other day now without approval from my oncologist. I have read that Letrozole has a half life of 48 to 72 hours so I feel that I’m still getting the cancer blocking benefits of the AI’s. These medications can cause such a decline in QOL but are also known to be life saving. I don’t have answers but just wanted to share my story with my BC sisters

  • lillyishere
    lillyishere Member Posts: 769

    Thank you Beesie. What are you planning to do about your legs? Is any laser treatments or anything you can do?

    bitchonwheels, this is one of the problems most of us are having with these meds. SE keep changing. I think under Femara website, it does say that can be taken every other day for people with severe liver conditions. Maybe, you can print it and take it with you to your next appointment.

  • marinochka
    marinochka Member Posts: 82

    Beesie, should not we calculate risk from 60 till 90 as average of those 3 risks for each 10 years?

    I am just buffled that I have to add those 3.

    I guess I totally forgot math.


  • bitchonwheels
    bitchonwheels Member Posts: 15

    LillyIsHere - I go to my oncologist for medication refills and orders for diagnostic mammograms. Aside from that I don’t have much use for her considering I can find research studies she hasn’t heard of. Second oncologist I have and same poor opinion of both

  • marinochka, the stat we all hear (especially in October) is that 1 in 8 women will be diagnosed with breast cancer during her lifetime. That represents a 12.8% lifetime risk. If you look at the chart, to get to 12.8%, you have to add together all the 10-year risks from age 20 through to age 80. So it's exactly the same to calculate the 'remaining' lifetime risk for anyone older than 20 - you add together all the 10-year risks from their current age up to age 80. That calculation tells you how much risk you have ahead of you through to age 90.

    Lilly, at this point while the fat on my legs bothers me and is noticeable to me (and to anyone else if I point it out), in the scheme of things, it's a pretty minor problem. So for now I will just monitor it.

    bitchonwheels, I love your screen name! I've read too that the half life of Letrozole is at least 48 hours and I've seen studies that suggest that lower doses work well, so I've always wondered whether we would get the same protection on a half dose or taking a full dose every second day. While there have been small studies on different dosing, research monies tend to go to new drugs & treatments so we're unlikely to see a large study on a drug that's been around for 20 years, even though it is so heavily used. That's unfortunate because I think a lot of breast cancer patients would benefit if there were tested and accepted alternate dosing options.




  • threetree
    threetree Member Posts: 1,157

    Speaking of risk, Beesie, I am one who went with those small studies of the half life of Letrozole, etc. and am risking just taking the full 2.5 mg dose every other day. I'm going with the idea that given the half life (I've seen mention of 48-72 hrs) and the fact that lower doses seem to offer the same benefit (and side effects too, unfortunately), it's still less of the drug overall that goes into my body. I also agree with bitchonwheels that oncologists might not be worth a lot after chemo. I did find mine helpful with the initial chemo treatment, but since then, she is not really anyone I would go to with questions or issues. I go to her for routine follow-ups, but seek out the advice of other doctors for any side effects or other problems I might be having. She has no interest in studies that might be out there, that contradict whatever the FDA has approved and fits into "standard of care". She actually believes I'm only getting "half" the benefit of the Letrozole I take, because I take "half" the dose. Drug half lives and the fact that some studies show lower doses to be just as effective, etc. go right past her.

  • marinochka
    marinochka Member Posts: 82

    Beesie, yes, i see it now on the chart. Have to think it thru(from math point of view).


    Nope, if you add all numbers in this table it is not 12.8 it is 15.1

    it is not like that, it is not simple adding

  • princessbuttercup
    princessbuttercup Member Posts: 159

    ThreeTree,

    In your shoes, I would find a new oncologist if yours is not giving you up-to-date medical advice and treatment. I'm going in every six months now for checkups. At my last visit she told me about studies which support my staying on Letrozole for 10 years instead of 5 (which I had previously been told). I really want an oncologist who is on top of the latest research. The only thing I can't (well, won't) do which she has asked me to try is fish oil. But I will find ways to make the Letrozole doable, if that is what the studies say gives me the best outcome.

  • moth
    moth Member Posts: 3,293

    PrincessButtercup, what's your objection to the fish oil? I take a vegan Omega 3 supplement - no burps, no after taste, no animal cruelty, same health benefits...

  • threetree
    threetree Member Posts: 1,157

    PrincessButtercup - Yes, at times I do think about finding another oncologist. She is friendly and the location where I see her is very convenient and part of one whole system where I get my cancer treatment. She's just so interested in "standard of care" only though, that it bothers me. I also have some question about her actual medical competence outside of knowing which chemo to give for what cancer. That's another reason I seek out most advice from other doctors. I'm surprised about this because this is a major "world class" cancer center at a teaching hospital, etc.

    I also agree with Moth, that fish oil can be a good thing. I try to eat fish several days a week to get those omega 3's, but on the days I don't, I take a Nordic Naturals fish oil capsule. No burps or aftertaste, but I do get a little digestive trouble. Not anything bad or debilitating.

    Glad that you generally like your oncologist and that she has an interest in new things on the horizon.

  • marinochka,

    You're right. The numbers in that chart add to more than 12.8% - which means there is an error in the chart. I used that chart because is it more recent than the one I usually use, but I made the mistake of not adding up the numbers. (And I admit, the risk from ages 80 to 90 did seem too high to me.)

    But... it's an error in the chart, not an error in the concept or methodology. If you want to find out your breast cancer risk for the next 30 years and the data you have provides risk estimates for 10-year periods, you need to add together three 10-year periods to come up with a 30 year risk. It is simple adding.

    Here is a chart from the Susan Love website. The data is older and presented differently - this chart shows cumulative risk as we age by 10 years. I have added in the copy in red, converting the data to 10-year risk figures (highlighted in the green box), similar to the 10 year figures in the previous chart. I've included the math (in the brackets). Note that Dr, Love's chart indicates a lifetime risk of 12.8%, but the figures in her chart add to 12.5%, so through rounding, she's missing 0.3% risk. You'll notice that her 10-year risk figures for younger ages are quite similar to the previous chart however Dr. Love projects a somewhat lower risk from age 60, with the greatest difference being less risk between the ages of 80 and 90 (which I think is probably valid). Based on her chart, the remaining lifetime risk (to age 90) for the average 60 year old woman is 8.2%. Doubling this risk, for those who have a previous diagnosis of breast cancer, is 16.4%.


    image

    Here is another screenshot from the Dr. Love website. She explains how to calculate lifetime risk, which is to add up all the 1-year risks over a woman's life. Using the same logic/methodology, if we have risk figures that cover 10 year periods rather 1 year, to calculate lifetime risk we add up all the 10 year risks over a woman's life. Taking that further, to calculate "remaining lifetime risk" for someone who is already 1/2 way through her life, we add up all the 1-year risks (or 10-year risks) over her expected remaining lifetime.

    image

    This brings up another important concept, which is that as we age, we "leave risk behind". When you are 60, you no longer have to worry about the risks you faced when you were 30 or 40. You either got breast cancer then or you didn't. What you have to worry about now is only the risk you face in the years that are ahead of you. The average 20 year old woman, with her whole life ahead (estimated to be another 70 years), faces a 12.8% breast cancer risk over her lifetime. But the average 60 year old woman has a lower 'remaining lifetime' risk, 8.2% according to Dr. Love's chart, simply because her expected remaining lifetime (to age 90) is shorter - 30 years rather than 70 years.



  • princessbuttercup
    princessbuttercup Member Posts: 159

    Hi Moth,

    One of my side effects of Letrozole is severe indigestion. I really struggle with this, even with daily Prilosec (often twice a day). Fish burps are my fear. Can I ask what brand of vegan Omega 3 you take?

  • moth
    moth Member Posts: 3,293

    PrincessButtercup, I use Opti3 by Vegetology. No burps and even if there were, no fish lol... https://www.vegetology.com/shop/opti3-omega-3-epa-...


  • beaverntx
    beaverntx Member Posts: 2,962

    Not quite rejecting but my Tamoxifen prescriber agreed today to stopping Tamoxifen while my body adjusts to a new medication that has not been playing nicely with T. Also will probably reduce the dosage when I go back on somewhere down the road. Have 2 more years to go...

  • princessbuttercup
    princessbuttercup Member Posts: 159

    Thanks, Moth! Will give it a try.

  • bitchonwheels
    bitchonwheels Member Posts: 15

    Beesie - Getting ready to go in for my next diagnostic mammogram next week - not sure if I’m going to burn the place down before or after

  • racheldog
    racheldog Member Posts: 209

    dtad: May I ask you about the Breast Defend supplement you take? I , too, am researching the DIM supplements before starting the AI drugs. I vowed to try the AI drugs but if I have additional joint pain to add to my already existing arthritis I want a back up plan. Breast Defend line is the most expensive on the internet but I see it does have the Mushroom complex, etc. There are doses for DIM noted anywhere from 20 mg to 200 mg. Of course, the oncs will not give their approval on supplements like this because there is no scientific data or research. And from one manufacturer to another you never know what you are getting. There are some lines of supplements that I trust more than others.

    How are you tolerating the Breast Defend line? Is that a vegan product? Any side effects with that? Gastric issues? Anything?

    How long have you been on this?

  • VioletKali
    VioletKali Member Posts: 97

    Racheldog,

    I have taken DIM since I refused hormone therapy, I am current 7 years a survivor and no sign of recurrence. For kicks and giggles I had a full body CT scan that I paid out of pocket for. I have ZERO tumors or signs of recurrence. I don't even see an Oncologist because there isn't any point since I don't take pharmaceutical anti hormonal therapy.

    QOL is everything to me. I QUIT chemo, QUIT herceptin, tried and QUIT anti hormonals.

    What I DO...

    - 600mg of DIM at Night.

    -Strict 130lb weight maintenance. Cardio, low calorie diet, low sugar, low fat.

    - Fast 14 hours a day. My last food intake is 7pm, then I won't eat again until 9am

    -Ceylon cinnamon AM and PM.

    -Green tea supplement.

    Does all of this help? IDK..Honestly. I was Triple positive and GRADE 3. I refuse to do chemo again, and radiation is also a hell no, so I am doing things I can that will not affect my QOL.








  • VioletKali
    VioletKali Member Posts: 97

    I wanted to add that I do not see an Oncologist because I have no need for one.

    My family practitioner orders my yearly breast MRI, and if something pops up then I will seek advice when needed. My family provider also orders any tumor marker tests I ask for.