Lumpectomy Lounge....let's talk!

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  • trilogy
    trilogy Member Posts: 5
    edited August 2022

    Thanks so much Chisandy - Big Sister - yes you are right - there are so many acronyms I can't keep them straight plus I went from DCIS Stage 0 to IDC Stage 1 within one month. I'm not sure what the Grade is. I think 2 and was told the Ki-67 Antibody was "slow growing". ER+ PR+ HR+ and HER2-

    My surgeon told me that Chemo was not necessary. I met with the Oncologist once and didn't really connect with her. I'm assuming that the MO will be my contact throughout this journey so I really want someone I can connect with so I may be looking for a different one - but as of now I've told the Radiologist to start scheduling me. I'll be 6 weeks out from surgery around the last week of Sept.

    In an article I found from the NIH: "Conclusions: Women age 70 or above with low-risk early breast cancer who are reluctant or unable to pursue adjuvant aromatase inhibition can safely pursue adjuvant radiation alone with limited differences in outcome." (2019) but, of course, there are other articles that say different!!

    And to speak to Maggie 15 - I also have Osteoarthritis, Rheumatoid Arthritis and Osteoporosis

    Decisions, decisions, decisions. Thanks for listening


  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2022

    Not just that, but there are three different AIs and most women find one of them has the fewest side effects. Even branded (hideously expensive, even from Canada) can differ from generic, and depending on the excipients & fillers there are sometimes differences among generics of the same drug. My MO put me on letrozole (generic Femara) because it made the biggest reduction in recurrence risk over tamoxifen or no endocrine therapy. I tried the branded Femara (from canadadrugsonline.com) but found that the generic Roxane & Teva had even fewer dyes & fillers. Eventually, could get only Accord, but by then I felt almost no SEs. Couldn't do tamoxifen, not just because it's contradicted with my maintenance antidepressant but because of the danger of blood clots at my age.

  • trilogy
    trilogy Member Posts: 5
    edited August 2022

    Thanks - so much to figure out. Seems we have the same DX. Are there any %'s out there of rate of return if just RT and no HT

  • Maggie15
    Maggie15 Member Posts: 55
    edited August 2022

    Trilogy - There are several online calculators that let you enter information about your tumor and see the effect of various therapies. The first two links are for IDC and give options for chemo and endocrine therapy. Since you also had a separate area of DCIS I have included a calculator for that which references radiation and endocrine therapy statistical effects.

    https://breast.predict.nhs.uk/tool

    http://www.lifemath.net/cancer/breastcancer/therap...

    https://nomograms.mskcc.org/breast/ductalcarcinoma...

    My tumor was larger so I also had the results of the OncotypeDX to help guide my decision. These calculators are statistical models and will not predict exactly what will happen to you. Your MO should also be able to give you ballpark estimates about how much certain therapies will help and how likely they are to cause serious side effects in your situation. I went with radiation and declined the endocrine therapy knowing that my chances of MBC recurrence are increased by 7%. I have osteoporosis and a terrible family history there (bone collapse led to my mother's death and so far my younger sister has had 4 hip replacements, 2 knee replacements and back surgery) as well as arthritis which, in my opinion, was more serious than lessening the chance of recurrence. Although my RO thought I would be fine with radiation and I sailed through treatment with minor side effects, six months later I developed grade 3 late stage radiation induced pulmonary fibrosis even though the chance for that happening to a never-smoker is just 3 in 1000. It was pretty scary at the time, but I now am being treated by an ILD pulmonologist and am doing OK (walk 3 miles daily) on inhaled corticosteroids. Hindsight is 20/20 but I still think I made the correct decisions with what I knew. Both undergoing treatment and doing nothing can have consequences.

    Good luck with deciding the best course of treatment for you.

  • trilogy
    trilogy Member Posts: 5
    edited August 2022

    Maggie - thank you SO much for the info I'm going to follow those links right now.

    Sorry about the side effects.but your post was encouraging to me. thank you.

  • Springdaisy
    Springdaisy Member Posts: 58
    edited August 2022

    My doctor told me a few you weeks ago that if I stopped taking letrozole at the two-year mark that my survival rate would only be slightly impacted. He emphasized the word slight. I have not input my information and I don’t intend to because the site was hacked and I can’t tell you how much that irritates me,the information that got out there.

  • trilogy
    trilogy Member Posts: 5
    edited August 2022

    Thanks Springdaisy -what site got hacked? This one?

  • Springdaisy
    Springdaisy Member Posts: 58
    edited August 2022

    well my first answer they tell me didn’t work. I believe this was the site where I got an email saying

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2022

    springdaisy, are you saying BCO was hacked, or the sites with the online recurrence-predictor calculators? Difficulties experienced with BCO have been due to the platform redesign, not any malevolent interferences.

  • Springdaisy
    Springdaisy Member Posts: 58
    edited August 2022

    Chisandy, I thought it was the breast cancer site but maybe I misunderstood everything in the message. I know they talked about possible images that maybe got stolen or whatever. You know more about this site than I do so I will take your word that it was not malevolent.


  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2022

    Images are not being stolen from BCO--it's the software redesign that seems to make some memes postable and some not (I think the particular posting members' own devices may be to blame). Also, they're averse to posting members' geographical locations under their avatars the way they used to--they're being cautious about member security.

  • Springdaisy
    Springdaisy Member Posts: 58
    edited August 2022

    That is very good to know. I am glad BCO are being that cautious with information. I already have been taking letrozole for a year and a half. A bit over that in fact. Pretty good as far as not having side effects.


  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2022

    A couple of years ago, my MO did admit that the bulk of the benefit of AI therapy comes by the end of year three, but to try to stick with it for 5-7 years for maximum risk reduction--although she did say there are no absolutes and no two patients are alike. But she was fine with me quitting at 6 yrs 3 mos. A recent decade-long study from the U. of Vienna reported that more than 7 years of endocrine therapy had more risks (cardiac, osteoporosis) than benefits.

  • Springdaisy
    Springdaisy Member Posts: 58
    edited August 2022

    yes my doctor is thinking five years but we will have to see what happens. He seems so sure that it will not come back because of the size of the small tumor. And no node involvement. technology changes so we will see. They also say that letrozole, after a person stop taking it, still gives protection to the body for a few more years. Not sure if it changes the DNA or what but I’ve read that more than once and the dr know this from studies that have been done.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2022

    Perhaps letrozole's residual beneficial effect, even after discontinuation, comes from its having built up in the adrenal glands and adipose tissue sufficiently to continue to prevent the aromatase pumped out from the liver from acting as the catalyst for converting the androgens they secrete into estrogens; by the time these letrozole stores have been depleted, the aging adrenals and adipose tissue no longer secrete enough androgens to be converted (and perhaps the liver can no longer make enough aromatase).

  • Springdaisy
    Springdaisy Member Posts: 58
    edited August 2022

    thank you. I knew there was some medical explanation. As long as it works and apparently it does!


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