Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Rejecting hormone therapy

1679111215

Comments

  • racheldog
    racheldog Member Posts: 209


    Exbrnxgrl, yes I do understand. Your presentation is not harsh. I lost a sister-in-law to BC who was clean for 13 years and then it came back and she passed. I think oncologists have such a challenge to face the ups and downs of these journeys women are going through. They have little time in clinic to spend a lot of time on long discussions with patients. That is medicine in many subspecialties these days. Thus the need to find each other in support groups or forums like this to share information of what is lacking in their rushed clinic schedules. I am saddened that I see younger and younger women being diagnosed.

  • ctmbsikia
    ctmbsikia Member Posts: 749

    Thanks @muska and everyone for sharing your bone med info. I had no issue with the (1) Prolia shot I did get. I also visit the bone health section here and saw that stopping Prolia should be followed up with another treatment (like Reclast). I don't know what my insurance will be next year, but going ahead with the DEXA at the end of this year. If things are worse and my MO doesn't help me, my primary care could possibly help get me covered. They said I should be doing some sort of treatment. I see both of them Jan and Feb next year,. Meanwhile, just hope nothing breaks.

  • threetree
    threetree Member Posts: 1,157

    exbrnxgrl - Thank you for mentioning that there is no "cure" and that those cells can float around, be dormant for years, and eventually make a return. I have friends who do not understand this, and they think that since I had all the conventional treatment and have no current issues but treatment side effects, I shouldn't be so worried or scared. They read about others having been "cured" and they know others who say they've been "cured" and they just don't understand when I say there actually is no "cure". To me it makes it even harder, because as you said, there are many who go on to live perfectly OK lives and the cancer never returns. The problem is we just never know which group we will ultimately be in, so the worry and scared remain. I also agree that doctors are pressed for time, but I also think they just don't want to talk about it, unfortunately, and yet it is the reality.

  • lillyishere
    lillyishere Member Posts: 769

    Exbrnxgrl, thank you! When I asked my MO what are the recurrence risks in ILC cases like mine, he said that the curve goes up the first 10 years and slowly goes down after 10 years. I assume it means a higher chance of recurrence every year that goes by on 10 years period. My PS told me that the cancer is removed and I am cured and I told him for as long as I am on treatment and see MO every 6 months, I am not cured. I am glad there are only few people that know about my cancer and I don't get advises from them. :))

  • princessbuttercup
    princessbuttercup Member Posts: 159

    Racheldog- I forgot to reply to your question. Yes, it was my oncologist who told me about my distant recurrence risk without the AI.

  • racheldog
    racheldog Member Posts: 209

    Thx PrincessB. I wonder if your MO goes by PREDICT and CancerMath----to reach that 17% risk she gave to you? I will start the Letrozole but I have one more different appointment next week. Meeting with my retina doctor for yearly exam. I had histories of bilateral retinal tears, fixed with laser. All these AI drugs can cause retinal traction. I want my yearly baseline with him and re-visit what he thinks about the AI drugs. Two other retinal docs have concurred that they have seen more eye problems and maculopathy with Tamoxifen.

    Have any of you had vision issues on the AI drugs?

  • lillyishere
    lillyishere Member Posts: 769

    I wonder what type of data do MO use to decide recurrence risks. My MO told me I have 30% recurrence risk if I don't take AI while predict says I have 16% recurrence risk without AI.

    Another question, from your experience on taking AI, when is the best time to take it in the morning or night? I take it at night but my insomia is getting worst. I wonder if I take it in the morning would be better. Any suggestions?

  • racheldog
    racheldog Member Posts: 209

    Lillyishere, I wonder the same thing. What data or information do the MO pull from to look at their recurrance rates? As I also understand it, anyone with HER2+ breast cancer cannot use the Oncolink scores either?

  • princessbuttercup
    princessbuttercup Member Posts: 159

    Rachedog- I don’t know what model my MO used to come up with 17%, but I am Grade 3 and that is really what is driving my treatment. The 17% does help me understand it, though. I trust my MO.

    Lilly- I take my Letrozole when I can most easily remember to take it, which is before bed. I tried mornings but was just not as successful.

  • KateHanni
    KateHanni Member Posts: 70

    Wow you are truly speaking to the choir here. My diagnosis is much better in terms of HR+ and PR+ and HER2- but I was violently sexually assaulted in 2006. It was attempted rape attempted murder, so I came into my cancer diagnosis with PTSD. What's been happening for me primarily that has me looking for AI alternatives is severe depression and suicidal thoughts. And it does not happen immediately. I'm taking Aromasin Brand now after two generics failed and I can go about 3 weeks doing just great and then WHAM I'm crying, can't think, completely depressed and having thoughts of the world would be better off without me.

    My husband and kids are all for quality of life so whatever my choice is to stay on or not take the AI's is my choice alone. At this point I think my onco on Monday is going to recommend Tamoxifen and I'm very concerned about the blood clotting issue and stroke issue which is rare but then again I feel like I'm rare and if anyone is going to have a problem with these drugs it appears to be me.

    That said I've been exploring other natural alternatives to AI's and have found some clinical trials for Grape Seed Extract (small trial) and Turkey Tail Mushroom (small trial) and a few other natural alternatives that do have Aromatase inhibition but cannot find anyone who has tried it or who has any further information on these alternatives. If anyone on this board has any insight or experience with them or knows of any larger studies for any and all natural alternatives to the AI's I'd be so grateful as it's looking to me like I've given this the best go at making these work that I can do and it's just too difficult to go through these depressive episodes.

    I'm proud of you for making it 10 years on Tamoxifen and would love to know what that experience was like for you. Any side effects for those 10 years in addition to your DVT and can you describe what happened/how you knew about the DVT and what was done about it?


  • KateHanni
    KateHanni Member Posts: 70

    I have the same thoughts. Why can't we get some data on the number of folks who can't tolerate the AI's, they stop taking them, they have the same type of cancer that I have (so a group with like cancer and like characteristics i.e. not diabetic, not obese, don't eat sugar, cancer early stage no spread to lymph nodes, HR+ PR+ and Her2-, Grade 3 Ki67 34%. IF I could get an apples to apples, like to like comparison of those who have stopped their AI's and what their outcomes were, I'd feel a whole lot more informed and prepared to make a life changing decision than I feel now. When I read the clinical trials there are so many people lumped in to the trials that have more advanced cancer than I have, many with metastases obesity, diabetes, smokers, drinkers etc.

    Not sure if I've mentioned this in any prior comments but there are three things I was doing, which I'm not doing now, that I believe may have contributed to my getting breast cancer. For a few years I was vaping nicotine (approximately 5 years). When I was diagnosed with the mass in my left breast I was also diagnosed with pneumonia (non covid) in my right lung and from that day forward I had stopped vaping altogether. Secondly I was prescribed Human Growth Hormone when I was in Peri-menopause as part of my hormone replacement therapy which way back then was not studied for it's effect on cancer, but I wasn't following the data after that and since then they now know that HGH can cause cancer to grow at alarming rates so I stopped that immediately upon getting my diagnosis. Lastly, I could never tolerate estrogen for birth control or menopause, so my protocol was progesterone only 200mg per night, which effectively removed all side effects like hot flashes etc. That also stopped the minute I found out about the malignancy given my cancer is PR+.

    So that leaves me wondering, now that I've eliminated the Growth HOrmone since January, eliminated progesterone and vaping if my risk is lowered simply by nature of what I've given up in the process of trying to be healthy and not have a cancer recurrence? Please feel free to weigh in as I'd love feedback.




  • KateHanni
    KateHanni Member Posts: 70

    I'm going through the same identical thing. Did you make a choice to take or not take the AI's?

    If so have you explored any of the natural AI's which have been in small clinical trials and which are prescribed in other countries (like Japan and Germany)?


  • lillyishere
    lillyishere Member Posts: 769

    PrincessButtercup, I took letrozole at 10 pm every night and for almost 2 years I haven't missed a dose. It is been 4 days that I moved to 9 am and I feel better with sleep but I feel hot flashes during the day. Also, I don't like to eat breakfast, so I take letrozole on empty stomach and it worries me even though the directions say that would be safe. Definitely, these days my joint pains are better and sleep way better. I wonder what others' experience is on timing of taking AI.

  • wondering44
    wondering44 Member Posts: 247

    I have thought about doing or not doing hormone treatment since my diagnosis. I am a BIG believer in the quality of life, which has kept me at a 98% no to hormone treatment. I met with my MO again to discuss it. I had already decided not to do it and was adamant about staying the course with that decision. I now have a clear understanding of why she wants me to do it. I thought it was to help prevent reoccurrence. My Oncotype score is only 8%. I figured the best option was to skip the hormones to keep my quality of life with that small number. My MO explained that the hormone treatment also helps to prevent the spread of cancer to the bones and organs in my body. With the amount of cancer found from the mastectomy, her concern is not only to stop reoccurrence in both breasts but to stop the cancer from metastasizing. That is a game-changer for me. While there is no guarantee cancer will return, metastasize, or not metastasize, trying hormone treatment to see if I have side effects or not to get ahead of it seems like a no-brainer in my thought process now. So hormone treatment to try to prevent MBC will be for me. I start shots to stop my ovaries in December and Letrozole in January. I am crossing my fingers for a somewhat side-effect-free experience.

    I support each person's personal decision to do or not to do the hormone treatment. We all have our own experiences with cancer and our own choices to make about our treatment plans. I wish all of you the best in the treatment plans you choose.

  • wondering and others reading, here is a copy and paste from a recent post of mine in another hormone therapy thread:

    *************

    To clarify for everyone, endocrine therapy (Tamox or AIs) provides 3 benefits:

    1) They reduce the risk of a local (in the breast area) recurrence, generally by about 50%. For those who've had a MX, this risk may be as low as 1% but for those who've had a lumpectomy + rads, this risk is usually more in the range of 8%-12%. Grade, size of tumor, surgical margins will all affect this risk.

    2) They reduce the risk of a distant (i.e. metastatic) recurrence, generally by about 1/3rd. This is the risk that we all fear the most. AIs generally perform a bit better in this area; my MO said that AIs reduce risk by ~35% vs. ~30% for Tamox. For those who facing a significant risk of mets, this small difference in efficacy can be important. For those who face a low risk of mets, the absolute difference between Tamox and an AI might net out to be less than a 1% reduction in risk.

    3) They reduce the risk of a new primary breast cancer; results vary based on the study but I believe on average the risk reduction is approximately 50%. For those who've had a BMX, the risk to develop a new breast cancer can be as low as 1%-2%. But for those who've had a lumpectomy, this risk can be significant. All of us who've been diagnosed with breast cancer are at higher risk (than the average woman) to be diagnosed with a new primary breast cancer. This second diagnosis might be a different type of breast cancer and it could be in either breast. A new diagnosis could come anytime during your life, although for all women our highest risk years are when we are in our 60s and 70s. My MO told me that my risk to develop BC again was about double that of the average woman my same age who'd never had breast cancer before; the following study seems to confirm that: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720990/ I was 49 at the time of my first diagnosis; the remaining lifetime risk for the average 49 year old is 11%, so my MO estimated my risk to be about 22%, although I had other factors that might have increased this risk. In addition to having a personal history of breast cancer, a family history of breast cancer, genetic mutations, and breast density are some of the other factors that can drive this risk up. (And yup, I drew the short straw and was diagnosed a second time, 13 years after my first diagnosis.)

    For each of us, even if we have a similar diagnosis, our risks in these 3 categories may be different, because of a lumpectomy vs. mastectomy, or having vs. not having a genetic mutation or a family history of breast cancer, or dense breasts, etc..

    ************

    One additional point of clarification, something I've mentioned a few times previously in this thread:

    The Oncotype score, and the PREDICT and CancerMath models, provide an estimate ONLY for the second risk I mentioned, the risk of a metastatic recurrence. These models do not tell you anything about your risk of a local in-the-breast recurrence or your risk to be diagnosed with breast cancer again with a new unrelated primary breast cancer which could develop in either breast.

    I don't know why this information isn't clearly explained by every MO to every patient.

    wondering, what this means for you is that the 8% risk from your Oncotype score is your risk to develop a metastatic recurrence. Oncotype scores assume that the patient will be taking hormone therapy, so without hormone therapy, your risk will be higher than 8% (probably closer to 12%).


  • wondering44
    wondering44 Member Posts: 247

    @Beesie,

    Your words, "I don't know why this information isn't clearly explained by every MO to every patient," were also my husband's words when I told him why I decided to do hormone treatment. Your post has an exceptional explanation of the information I needed. Thank you for posting it.

    Now that I understand what it means to do hormone treatment, I must take the opportunity to treat my diagnosis early. If I can lower any % of that metastatic recurrence number, I must do it. Not every woman gets that same contingency at diagnosis.

  • wondering, You're welcome!


  • kzab
    kzab Member Posts: 3

    New to bc.org. 3 weeks into anastrozole and definitely starting to feel some of the side effects - poor sleep, aches and pains, fatigue and hotflashes (or more hotflashes I should say). So far hasn't impacted QOL too much but boy am I knackered after doing any type of exercise, wipes me out....and my muscles feel like I just ran a marathon even after a walk.

    Curious if anyone has looked into the study discussed in this link....well bc.org says I can't post links so it's the randomized Stockholm trial on adjuvant tamoxifen among postmenopausal patients with early stage breast cancer.

    I've researched stuff to death between initial diagnosis and now but my brain is struggling to figure out what this means. I didn't get a Mammoprint test so it doesn't really matter but I had a grade 1, no lymph node involvement, PR+, ER-, HER2-, 8 mm tumour, oncotype score of 5, and already in menopause at 55. If it wasn't for my ER- status I think I might fit the ultra low scenario but no way of knowing. I'm giving AI's a go but my MO confirmed today my absolute risk of distant recurrance is 97% with AI and 95% without, less than a 2% difference, but relative risk reduction of 40% with the AI. I thought I knew what the relative risk meant when she told me but now I'm fuzzy on it. I think there's some mental SE going on too, I'm struggling to think things through in the last week or so. MO also told me about the trial I mentioned above, I just can't seem to digest it and was hoping someone had already done so and could put it in layman's terms for me.

    I'm rambling, thanks for listening....need to figure out how to add a signature...

    DX 6/14/2021 IDC, Right, 8mm, Grade 1, 0/3 nodes, ER+/PR-, HER2-

    Surgery: 7/14/2021 Lumpectomy, SNB

    Radiation: 9/2/2021 APBI

    Hormone Therapy: 10/1/2021 anastrozole

  • cowgirl13
    cowgirl13 Member Posts: 765

    kzabreznik, I was on Arimidex for 8 years. To help with sleeping I was prescribed trazadone and never missed a good night's sleep. Trazadone is an old 'work horse' drug, no bells and whistles--it's not addicting--it just really worked for me. Hope sharing my experience might help.

  • racheldog
    racheldog Member Posts: 209

    Kzabresnik---my mind would be spinning too. My mind still is spinning about whether to go on Letrozole. I filled the script but decided I want a good Thanksgiving with my family with NO extra side effects or pain. These drugs terrify me and I am no wimp. I am Her2+ with a small 8mm tumor and had lumpectomy. I wish that there was some Oncotype for HER2+, but appears there is not. This has not been a fun journey this year and I am just now coming around to feeling like myself after completing infusions. Still not there totally. I see so, so many very small early stage tumor patients on this site being offered the AI drugs or Tamoxifen.

    I am older and I see Bessie has added so many statistics that are never brought up by oncologists. Not sure, Bessie, where you find these? I debated about mastectomy vs. the lumpectomy and radiation from the get go but my MO thought it was such a small tumor and the stats show equal outcomes either way? I am 69 and have significant osteoarthritis in joints and I sure do not want to add to being so incapacitated with more joint pain that daily living becomes awful. Plus I cannot see adding another drug to combat the SE of the AI drugs makes any sense. I have spent a lifetime not taking any drugs except a statin and was pretty darn healthy up until this breast cancer diagnosis. I will try Letrozole in December. But if QOL is worsened I just may not be able to continue. I just spoke to another BC friend who went through all three of the AI's and then Tamoxifen and quit because of intolerability. She has not told her MO yet.

  • threetree
    threetree Member Posts: 1,157

    Racheldog - I really know what you mean about wanting to wait on the Letrozole. I finished my radiation a few days before Thanksgiving 2019. It had fatigued me, but even after a few days, I was feeling slightly better and enjoyed Thanksgiving immensely. The oncologist wanted me to start the Letrozole in early December, and even though better I was still feeling a bit fatigued from the radiation, so told her I wanted to wait until after Christmas at least. By Christmas, I felt even better - almost like my old self before cancer, chemo, surgery, and radiation. I was just loving it! I wound up having a real good Christmas and New Year's and didn't start the Letrozole until Jan 15 of 2020 (the prescription had been sent in Dec 15). I am so glad I waited and have no regrets whatsoever. Those approximately 2 months between the end of radiation and the beginning of Letrozole where 2 months that I continue to cherish; especially the time starting after Christmas and until mid January. I hadn't felt that good in a long, long time, and I haven't since, now that I have all the Letrozole aches and pains and more. What that "time off" told me was that there really is my old self in there somewhere and that just possibly (knock on wood) I can get it back someday if my cancer doesn't spread and I can finally get off this damn AI! To have had those glimpses of my old regular self just for that short while has given me all kinds of hope and joy. Take care and good luck! Thoroughly enjoy any "gap" in treatment or time off that you take.

  • Racheldog, it's Beesie, not Bessie.

    Where did I find my stats? I was first diagnosed 16 years ago. I have read dozens (actually, probably hundreds) of research studies since then. When I quote a particular study, I usually include the link. But the stats in my earlier post were accumulated knowledge. That said, I looked at the study that kzabreznik mentioned above, and here's a sentence from their abstract: "Among ER-positive patients tamoxifen reduced locoregional recurrences by 48%, contralateral breast cancers by 54%, distant metastases by 28%" (https://pubmed.ncbi.nlm.nih.gov/17453361/) That's pretty close to the numbers in my earlier post, where I said hormone therapy reduced local recurrences by about 50%, new primaries (including contralateral breast cancers) by approximately 50% (although studies vary on this one), and that Tamoxifen reduced the risk of mets by ~30%.

    Have you tried PREDICT to see how much benefit you get from AIs? https://breast.predict.nhs.uk/tool


  • gb2115
    gb2115 Member Posts: 551

    Beesie, do any of the online calculators take recurrence into account? For my situation, with a recent recurrence, I feel like statistics for future recurrence are hard to find.

  • gb, what PREDICT and CancerMath estimate is mortality. That is effectively the same as a metastatic recurrence, since breast cancer has 100% survival until mets develops. Of course there is a time lag. A 15 year mortality estimate won't include mets (and mortality) that occurs beyond 15 years. And it won't include those cases of mets that developed earlier than 15 years if the patient remains alive at 15 years.

    What these models do not do is identify how the metastatic recurrence happened. They take a primary diagnosis and estimate the 15 year mortality rate due to breast cancer, regardless of how and when mets developed. For most patients, mets develops without there first being a localized recurrence. But for some patients, mets develops only after the patient first has a local/regional recurrence. None of the models separate out these types of recurrences - they only look at the end result after 15 years, survival or mortality.

    We have to recognize that the finer these models get in terms of breaking out different treatments and recurrence patterns, the less accurate they will be. The larger the patient base, the more reliable the model. More detailed models will by necessity be based on smaller patient numbers, so they will be less accurate.





  • kzab
    kzab Member Posts: 3

    Cowgirl13 - thanks for the reminder! I actually used Trazadone years and years ago when I went through a horrible bout of insomnia, had totally forgotten about it. Good to have ideas in the back pocket if my sleep gets so bad I need to use something. Might try taking my AI in the morning first and see if that helps and saw melatonin works for some folks. Love to see that you're 12 years out and doing ok.

    I added a signature in settings, guess we'll see if it shows up!

  • kzab
    kzab Member Posts: 3

    Racheldog - definitely not an easy decision although I figured I will take it until I just can't anymore. Of course I hope that the SE's won't be that bad but no way of knowing till I give it some time. Not too excited by the few that have popped up so far but still hold out hope. I just got out of bad marriage 9 months before, that killed my spirit, and was just starting to figure out who I am and to live my best life when I got the dx. So I'm sure as hell not going to accept having to live with a horrible QOL, I'm just coming out of a really dark time in life and not willing to go back if I have a choice about it. Enjoy the down time between treatments!

  • lillyishere
    lillyishere Member Posts: 769

    I have been in letrozole for almost 2 years and during time, I have been taking letrozole every night when my alarm went off at 10 pm. I thought I will sleep through hot flashes, etc., and my side effects have been up and down. Lately, insomnia has been such a problem for me. Also, numbness of feet and joint stiffness in the morning that I had offset with yoga. For almost a week, I changed the letrozole in the morning to give time to wear off until nighttime. So far I can see a difference in a better quality of sleep and not having joint stiffness when I wake up in the morning. Also, I get only light hot flashes during the day. Have I been wrong for these 2 years by taking letrozole at night?

  • salamandra
    salamandra Member Posts: 723

    Hi LillyIsHere,

    I think the only way you can find out is to try to take it at other times and see how it goes. There's no one best time for everybody - and even for an particular person one thing might work for a while and then need a change.

  • lillyishere
    lillyishere Member Posts: 769

    I agree Salamandra. I just want to add that if AI is creating problems not to give up but to try at different times of the day may help a bit.

  • racheldog
    racheldog Member Posts: 209

    Three Tree, your post warmed my heart, thank you. Yes I have decided to just have Thanksgiving and maybe even Christmas this yer trying to feel like myself again. Hard to believe that back on Jan. 1 of 2021 I was still at work running around and feeling so strong about plunging into treatment. Come Jan 3, 2021 to now have taken what I considered myself to be an older gal in good shape and spirits to a whole new self after the ups and downs of being beaten down by chemo, radiation and monoclonal antibodies. I will most likely start this AI (still sittling in the Walgreens Pharmacy bag) in Jan of 2022.

    Kzab, thank you too. No it is not an easy decision to wrestle inwardly with. i promised myself I would try these and despite doing all the calculators out there Mortality seems to fight with Quality of Life. Appreciate that this site gives us the opportunity to share knowledge and this sisterhood none of us wanted to join.