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Opting out of Adjunt Therapy for Stage 1 Breast Cancer

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I Was diagnosed with bc in September last year at a regular mammogram. I received a lumpectomy in my left breast and radiation treatment. I am now almost 63 years old. I have tried both Femara and Tamoxifen with very bad side effects. Enough to sideline me and make my life miserable. I am currently not taking anything and feeling great. I just wish I had more information regarding my decision. There was a study that a friend gave me who lives in Europe that says that taking the medicine will only add 53 days to my life after 23 years. It was a statistical average. I would REALLY love to hear what you all think. How many people with this type of cancer at this age have a recurrence is another question I have. I am scared and would love the help.

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Comments

  • denise-g
    denise-g Member Posts: 353
    edited November 2015
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    Kalypso - my mom was 80 when diagnosed with Stage 1 breast cancer.  She has been able to take Arimidex.

    We went to a major cancer center (our local hospital recommended she have radiation).   After being given all the

    odds and statistics, my mom made the final decision that she was not going to have treatment. 

    My opinion would be at your young age of 63, you seek another opinion at a major cancer center...

    It will be worth the drive or travel if you must to get peace of mind.

     



  • specialk
    specialk Member Posts: 9,233
    edited November 2015
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    calypso - I put your information into the tool PREDICT (www.predict.nhs.uk/predict.html), which is a UK site.  With no treatment beyond surgery (this site is not factoring in rads) 95 out of 100 patients are alive after 5 years, with no additional survivors when adding hormonal treatment.  At the 10 year point, 90 out of 100 are alive, with only an additional 1 surviving using hormonal therapy.  On the Lifemath (www.cancermath.net) site, the results are very similar.  This is most likely due to small size of tumor, no nodal involvement, and low grade.  You might want to ask your oncologist to run your numbers on the AdjuventOnline tool so you can see this for yourself - or try it on either of the ones I used.  If you use the Lifemath site I like to use the pictogram graphing - it is the most straightforward and easy to understand.

  • chisandy
    chisandy Member Posts: 11,378
    edited November 2015
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    Hmm....according to the calculator, which takes neither type of surgery (I presume it assumes some sort of surgery), margins, radiation or Oncotype DX into account, my chance of dying from breast cancer w/o adding any adjuvant treatment w/in 15 yrs. is 10.3% per the Lifemath calculator or 11.4 Kaplan-Meier death rate. My predicted life expectancy without treatment is 19.1 years (vs. 20.7 if I never had cancer), meaning I should drop dead around my 85th birthday. Adding either an AI, SERM, ovarian ablation or combination thereof (acc. to the calculator, they’re interchangeable) brings the 15-year cancer death risk down to 7% (Kaplan-Meier 7.8%) and makes my predicted life expectancy 19.6 years--it would add 6 months to my life, so I’d make it to 85 1/2, which was how long my mom lasted with COPD, CHF and an unbiopsied untreated 6cm lung nodule (she’d been a 3-pack a day smoker for 50 years, quitting 20 years before she died. I don’t have any of those comorbidities--and i’ve never smoked). . Were I to add state-of-the-art chemo, my risk would be cut an additional 2.8% and I’d get an add’l year, for a total of 20.6, or age 86-1/2. Adding a CMF-type regimen would give me less than a month and a half extra than an AI alone.

    But the calculator doesn’t predict recurrence, only death from cancer. It doesn’t take into account Oncotype score--mine is 16, which according to my MO makes my chance of recurrence with radiation but without an AI 11%, but adding an AI takes it down to 8%. Chemo would take it down less than 1% further. But getting back to Lifemath’s charts, most interestingly, my chance of being dead from some cause--whether or not it’s cancer--in 15 years is 33%--which means by age 80, if I take an AI I am likelier to be dead of something, whether or not it’s cancer; and I have a 29% chance of dying from something other than cancer. In other words, statistically I am still likelier to die of one of the following--a heart attack, stroke, sepsis, pneumonia, anaphylaxis, homicide, pulmonary embolism, terrorist attack, complications of a broken hip, fire, drowning, suicide or car or plane crash--than I am of breast cancer. And these calculators also don’t differentiate between local recurrance and mets.

    But we all know that statistics are just numbers, and not guarantees. My chance of having gotten breast cancer by now was 12%, yet here I am. Whatever happens to you is 100%.

    Think I’ll try the AI or raloxifene until the side effects are life-threatening.

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited November 2015
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    I'm younger than you, but also had a small cancer. Tamoxifen sucks, but for me...I'll take every extra day I can get. You have to weigh how strongly you feel about that versus how bad you feel.

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited November 2015
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    All along, I've been having a bit of a problem syncing those cancermath sites with recurrence statistics. Assuming I stick with an anti-hormonal treatment for the next couple of years, I have about an 8% chance of distant recurrence (it leaps up to 15% without treatment) and, should that metastasis take place, I'd sure expect my life expectancy to be shortened by more than 30 days. So what gives? Well, I just checked out an actuarial life expectancy table. If you are female and age 20-70, your plain, ordinary life expectancy will get you to about age 85 (84 at 20 and 30, 85 at 40,50, and 70, 86 at 60). At 80, it's 91, and at 90, 96. Those statistical numbers include all causes of death, including breast cancer.

    So I'm thinking that if the bc mortality statistics (along with all other causes of death) are already firmly ensconced in our actuarial life expectancy, then an already-accounted-for diagnosis is not going to skew those numbers very much. What might skew the numbers (favorably) would be an absence of diagnosis of bc, heart, lung, diabetes,circulatory, or any other ailment or condiditon.

    Anyway, for me, especially considering the quality of life issues consequent to a mets dx, my statistical recurrence probablility/possibility seems a more valid (and personal) predictive and decision-making tool than the life expectancy predictors.

    I stuck with AI's for over two years, had a hard time with them, recently switched to tamoxofen, and am very happily side effect-free and looking forward to keeping this drug going as long as my onc recommends.

    I'm hoping that sticking with the statistically-recommended treatment removes breast cancer from my personal life expectancy table, skewing the numbers up.

  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited November 2015
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    So very much, also, depends on your mindset and life-stage. My mother was diagnosed with a very aggressive, but early stage breast cancer nine years ago when she was 74 years old. Her recommended treatment plan was surgery (lumpectomy), chemotherapy and radiation, followed by hormone therapy. (Despite having had a full hysterectomy 25 years prior, she still developed a strongly hormone-positive breast cancer.) She decided on a mastectomy and hormone therapy (Arimidex), but refused chemotherapy. Her reasoning was that - at age 74 years old with other health issues - another five years of life would be a gift even if she didn't develop cancer again. She admitted, quite candidly, that if she were younger with children to raise, her decision would have been very different, but she felt that - at her age - she really didn't want to go through chemotherapy.

    I am pleased that she's now 9 years cancer-free, although a mild stroke and mobility issues have slowed her down in recent years. She knows that she took a chance, but it was a risk she was comfortable with and she made the decision with her eyes wide open.

  • labelle
    labelle Member Posts: 134
    edited November 2015
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    Tamoxifen and AI therapy have been shown to stop approximately 50% of all expected recurrences in woman who've had ER+ BC. For example if 20 out of 100 women with your stats could be expected to have a recurrence, if all were given Tamoxifen or AI therapy only 10 would experience a recurrence. Given how common breast cancer is, lots and lots of recurrences are prevented by these drugs. However, for any given woman with these stats (example stats), the chances are 80% that she won't get a recurrence with or without tamoxifen or AI, 10% that she will have a recurrence even if she takes these drugs, and 10% that by taking these drugs she will prevent an otherwise expected recurrence or a 90% chance that these drugs will make no difference in her prognosis. Your doctor should be able to tell you your approximate recurrence rate both with and without these drugs so you can make a good decision. Almost all women who are ER+ will be offered and encouraged to take these drugs, but for most of us with early stage cancers the big numbers show even if we do nothing but surgery or surgery and rads in the case of lumpectomies, the odds are that we won't have an recurrence.

  • tgtg
    tgtg Member Posts: 75
    edited November 2015
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    Someone above advised getting predictive numbers from Adjuvant Online--not good advice at all, in my opinion. This predictor was created by the pharma industry to sell meds, which you will see if you visit and study its corporate website. I was alerted to the flimflam of this outfit when--five minutes after the oncologist \told me that I am in excellent health and that at 71, I was healthier and fitter than most 60-year-olds--she gave me the Adjuvant Online "report," which stated my health was "fair." When I questioned her about that description in light of what she had just said about my excellent health, the only answer she could give me was, "They only let me choose between 'fair' and 'poor.'" RED FLAG! When I got home, I decided to research just exactly who these folks are, and finally uncovered the (deliberately, perhaps?) obscure part of their website that gives credentials of their corporate heads. Turns out, all but 2 of the many leaders of this outfit have MBAs; only 1 doctor and 1 scientist appeared on their list. Worse than the red flag, it turns out--this outfit was created by and is supported by the pharma industry and its cancer-business branch--another fact buried in their website. .

    There are other unbiased predictors out there, created by academics and university health centers, as several others above point out, . But this Adjuvant Online is self-serving advertising.

    When I was diagnosed (at 71), I decided to do the lumpectomy and rads, but to decline anti-hormonal therapy of any kind. With a stage 1, grade 1 tumor excised with great margins, and with no nodal involvement, I saw no great advantage (in fact saw great disadvantages) for longevity) in exposing myself to the long-term co-morbidities that either kind of hormonal therapy brings. It seemed foolish to me at my age to extend my theoretical lifespan by four months, and to pay for those four months by inviting such charming long-term collateral damage into my life as stroke, deep vein thrombosis, glaucoma and other eye ailments, and osteoporosis into my life! I am now three years out, recurrence-free, happy as a clam, still healthy as the proverbial horse and climbing mountains for fun.

    As someone above said, though, I would have thought differently, I'm sure, if I had been 40-ish at diagnosis, but I still would NEVER have based my decision on data from Adjuvant Online!

  • corky60
    corky60 Member Posts: 453
    edited December 2015
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    I've been in remission (as my oncologist calls it) for going on three years. Diagnosed at 60, I tried Aromasin for a few months and suffered from knee pain (and awful insomnia which hasn't left.) I moved onto Tamoxifen and endured bad reflux. Doctor said that Tamoxifen didn't cause that but when I quit Tamoxifen the reflux went away. Quality of life is important especially when dealing other non-cancer related health issues as well. The fact that there was no cancer found at the lumpectomy (must have been removed by the biopsy?) weighs on my decision as well. So no more hormonal treatments for me. I am comfortable with my choice even though my oncologist mentions it at every appointment.

  • cactus_pearl7
    cactus_pearl7 Member Posts: 5
    edited March 2016
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    I'm new to breast cancer, having just been diagnosed last month. I've had a lumptectomy and will begin RADS in one week. At this point, I have decided to forego any hormonal or AI drugs. Considering the side effects, risks with my family history of stroke, and my current physical and mental condition (chronic depression), I don't see that the benefits outweigh the risks. I'm 62, and I feel that quality of life is better than quantity. My only daughter supports my feelings on this, which helps me tremendously.

  • moderators
    moderators Posts: 8,176
    edited March 2016
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    Hi Cactus_pearl-

    We want to welcome you to our community here at BCO. We're so glad you've joined us, and hope you find the support you need during your treatment!

    Deciding on what treatments will work best for you is a very personal decision, and it's so important to weigh all the benefits and risks, which it sound like you've done! You and your family know what's best for you!

    Good luck with your radiation treatment, we hope to see you on the boards!

    The Mods

  • chisandy
    chisandy Member Posts: 11,378
    edited March 2016
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    I'm noticing a pattern here that underscores the fact that "Stage 1 hormone+" is a categorization that includes a much wider variety of tumor profiles than would appear at first blush. I'm seeing mostly women here with Luminal A IDC or DCIS tumors smaller than a cm, which were also Grade 1. Yet there are women like me with Grade 2 Luminal A tumors larger than a cm (1.3 in my case) that were highly ER+ and almost 100% PR+. And there are plenty of Stage 1 women with grade 3 and/or Luminal B tumors.

    If I had a smaller tumor that was Grade 1 and less highly hormone-positive, I too might have thought twice before starting an AI. And I think, especially for those over-65 (or even over 60) women here with tiny Stage 1 very indolent (Grade 1, Oncotype in the single-digits) cancers, the comorbidities and quality of life issues may be more important than longevity or recurrence statistics. I'm convinced that for me (diagnosed at 64, started Femara just before 65) opting for adjuvant endocrine therapy is the right choice for now. Any residual micromets are likely to be extremely vulnerable to estrogen-deprivation. The side effects (after two months) are pretty mild--the only troublesome one is a slowed metabolism--and I can live with that.

  • Unknown
    edited June 2016
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    After 3 tries at different meds I am opting out. I am finding evidence of others with your findings. Thanks for your help and helping me to have peace of mind.

  • cactus_pearl7
    cactus_pearl7 Member Posts: 5
    edited July 2016
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    It sort of infuriates me when you tell a doctor about a side effect of a medication you're experiencing, and it's one he (usually a male) never heard of, he dismisses it like you're imagining it.

  • sh2015
    sh2015 Member Posts: 6
    edited April 2017
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    I also decided to stop the meds. I took Arimidex for a while and was switched to another one. Could not sleep, focus, and was not a very nice person. I decided to stop. My MO said my risk was small anyway so to stop didn't have that much effect.

  • dtad
    dtad Member Posts: 771
    edited April 2017
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    Hi everyone. I opted out of anti hormone therapy due to a pre existing autoimmune peripheral neuropathy. I was not willing to compromise my QOL anymore than it already is. Of course there are no guarantees. We all have to make our own informed decisions. Good luck to all....

  • Samantha51
    Samantha51 Member Posts: 4
    edited January 2018
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    thank you very much for sharing your research with us! Though a few years later , just having joined, this has helped me cement my decision to not have H T. Thx again

  • letsgogolf
    letsgogolf Member Posts: 65
    edited January 2018
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    Interesting topic. I hope somebody will correct me if they believe I am wrong. I have read and I was also told that the effectiveness of these drugs is directly related to how estrogen positive and progesterone positive your tumors were. In other words, the stats. are averages. Someone who is 100% estrogen positive is going to receive more of a benefit than someone who is 20% positive. I believe I would consider this prior to deciding to discontinue the drugs, especially if your % was on the higher side.

  • benaya
    benaya Member Posts: 36
    edited April 2018
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    Glad to see this discussion. I just had a lumpectomy (IDC, stage 1, ER+, tubular) and have decided to opt out of hormonal therapy due to quality of life considerations. Although my subtype of IDC, "tubular," is less aggressive, I would probably have made the same decision without the subtype, or would have tried the drugs and if the side-effects were too great, would discontinue. After consulting with several doctors, all of whom had varying opinions, the surgeon and oncologist I ultimately chose felt okay with my refusing sentinel node biopsy & radiation (which they didn't recommend anyway) and although they'd like me to try the meds, are okay if I bypass. It's a personal choice and gamble I'm willing to take. We'll just watch closely.

  • Schweety
    Schweety Member Posts: 28
    edited May 2019
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    I just wanted to thank you for your gumption in letting us older newbies on your research findings! Good Job!

  • littlelal
    littlelal Member Posts: 2
    edited July 2018
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    I have dcis stage 0, lumpectomy left breast in june 2018 - at age 68 - deciding no drugs - but not sure even if I want to do radiation today as scheduled  - but saw you did - what were the effects?  

  • Sharronn
    Sharronn Member Posts: 1
    edited August 2018
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    I was diagnosed last year (age 59) with stage 1, ER, PR positive breast cancer. Tumor was 1.9cm. Had a double mastectomy with reconstruction, chemo (TC regimen , 4 cycles). Now my Dr wants me to take AI, but I’ve already tried Arimidex and Aromasin, both not tolerated well, joint pain, then depression. Now she wants me to try Femara. I’m not convinced that the side effects of drugs outweighs the benefits. My oncotype score was 24. Any suggestions?

  • mustlovepoodles
    mustlovepoodles Member Posts: 1,248
    edited August 2018
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    e same as

  • footloose
    footloose Member Posts: 25
    edited February 2019
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    Kalypso

    I've had several lumpectomie with no treatment afterward. 1st in 1989 left, 2nd in 2002 Right, then another in 2005 right

    which I think was just a continuation of the previous. They were all DCIS. This time I chose mastectomy b/c it was IDC.

    Good choice as they found more than the one tumor.

    I think you are fine so long as you get annual mammos.

  • footloose
    footloose Member Posts: 25
    edited February 2019
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    Kalypso

    I've had several lumpectomie with no treatment afterward. 1st in 1989 left, 2nd in 2002 Right, then another in 2005 right

    which I think was just a continuation of the previous. They were all DCIS. This time I chose mastectomy b/c it was IDC.

    Good choice as they found more than the one tumor.

    I think you are fine so long as you get annual mammos.

  • 239Happy
    239Happy Member Posts: 2
    edited March 2019
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    I am so glad to her of your remission. And all the details you've shared. I recently was diagnosed with Invasive Ductal Carcinoma (IDC) at age 60, my first questionable mammogram. So I am a bit concerned. That's interesting that your cancer may have been removed when the biopsy was done. Thanks for sharing!

  • rain1
    rain1 Member Posts: 1
    edited May 2019
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    Hello Kalypso,


    I had aLumpectomy in 2015 and elected not to use any hormones. So far so good. Best to you

  • bennybear
    bennybear Member Posts: 245
    edited May 2019
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    after only a few months on Anastrozole and aromasin I have developed osteoporosis so I am off too. Could deal with knee pain, insomnia but my bones are a deal breaker. Now hoping to strengthen them!

  • Sal462
    Sal462 Member Posts: 11
    edited September 2019
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    So glad to see your post. I joined this group I guess about a month ago - too lazy to look -- for just this reason, I do not want to do Tamoxifen. I hadn't looked in a while but just now decided to check and here you are.

    I too can't figure out the percentages. They says 45% less risk reurrence, but even my oncologist who wants me to do it said it's not REALLY 45%, more like 5 - 10 5 becasue the 45% is a small group. My sister, who is a lawyer w/medical degree, says from one thing she read that given the percentage risk of reurrence in my type - like 1%, -- you're talking 45% of 1%, so .045% The percentage I also saw, which might not be as good as my sister's calculation but still not bad, and sort of like what the oncologist says, is 96% of people who take it no recurrence and 93% of those who DON'T take it no recurrence. So 3%. And meanwhile you have to worry about strokes, blod clots, bladder things due to estrogen loss, joint things (and I already have knee problems which interfere with things I like most) and hair loss. Not that hair loss is that big a deal, but even chemo you take it, lose hair and then it's over. This is 10 years of thinning hair if you do it like they want for the 10 years.Oh, and possible stomach things. Oh, and they say possible hearing loss, and I have a problem with dizziness anyway so anything that affects ears I don't want to go near.


    So for now I am totally with you, do not want to do the Tamoxifen.

  • DorothyB
    DorothyB Member Posts: 143
    edited September 2019
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    Sal, if you go to this thread https://community.breastcancer.org/forum/78/topics/873426?page=1#idx_19 there is a link in the first post and a different link further down in the thread. Both of these will give you the benefit of doing tamoxifen. Of course, they are only estimates, but I got the same answer w/ both of them. I am 6% more likely to be alive in 15 years if I take tamoxifen.