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Stage1 BC Negative nodes-Clean Margins -Onco 35

thetwins65 Member Posts: 4
edited May 15 in Stage I Breast Cancer

I declined Chemo as I have CRPS - not sure if I made the right decision. Still have time do it ??
Had surgery now scheduled for radiation and at today’s visit she want me to start Anastrozole and Kisqali - given all the side effects I’ve been reading about Kisqali it presents very close to Chemo. Would love some input. My stage us only at a 1 with negative nodes and clean margins. Seems a bit much to me. But, I’m a newbie at this deal. Thanks all….


  • moderators
    moderators Posts: 8,085

    @thetwins65, welcome to! We're glad you found us, although we're sorry it had to be for this reason.

    Your stage I diagnosis with negative nodes and clear margins is positive news, but it's important to weigh the benefits and risks of each treatment option with your medical team, as they can provide personalized guidance based on your specific medical condition.

    As for the recommended Anastrozole and Kisqali, it's normal to feel apprehensive about potential side effects, but please remember that side effects can vary from person to person. Take a look at the pages of this popular discussion if you'd like: For Arimidex (Anastrozole) users, new, past, and ongoing.

    Hope this helps! Looking forward to hearing more from you soon.

    The Mods

  • mandy23
    mandy23 Member Posts: 111

    Hi @thetwins65 -

    Sorry you had to join us, but glad that you found us. It's all quite confusing isn't it?

    It would be helpful if you put your complete diagnosis in your signature for us to help you better. Did you have Oncotype testing? If so, what was that score?

    Although it's great to be Stage 1, there are other factors that might cause them to want you to have treatments to reduce the odds of it coming back. Since they recommended chemo to you, was your BC perhaps Grade 3? Grade 3 is seen as more aggressive, so they often want to be sure that there aren't some sneaky cells hidden somewhere else in your body that the surgery and radiation didn't get. Since they recommended Anastrozole, I am also speculating that your BC is ER+ and/or PR+? It is a standard treatment for anyone with HR+ receptors. Anastrozole is an aromatase inhibitor (also called AI). There are several of them. For me it is Femara (Letrozole).

    My "guess" is that your MO may be recommending Kisqali since you declined chemo? And that's all it is….a guess…It's really important that you contact your MO and discuss your concerns. Ask her if that's the reason and/or if you can still decide to do chemo if you have changed your mind. I know that my MO also mentioned Kisqali to me at one point, but then changed her mind as the studies (at least at that time) showed it's success was for node positive patients. However, MOs do sometimes make decisions based totally on their patient's particular B.C. There are so many variations.

    Anyway, bottom line. Contact your M.O. and express your concerns and questions. It's important that you understand all the treatments and the decisions you are making.

    Take care.

  • sarahmaude
    sarahmaude Member Posts: 338

    One fact that made me feel better about chemo is that higher Oncotypes benefit more from chemo. Chemo targets fast growing cells, and that's what chemo targets. From what I've read, Kisqali has fewer side effects than most chemo regimens. The downside, is you would be taking it for longer than most chemotherapy.

    I don't know enough about CRPS, to be intelligent about it, but think talking to the doctor who treats you for that would be important. One potential plus is that on chemo, most of us get steroid treatments to prevent severe reactions such as vomiting. The steroids could help your CRPS symptoms.

    You would need to ask your MO regarding timing of adjuvant chemo. I do know that Kisqali is now being given to high risk BC survivors to prevent mets, so there will be more data on that than there used to be.

  • texasaggie64
    texasaggie64 Member Posts: 3

    Hi…heaven knows I don't have an answer…I'm new here myself. I was very early stage cancer, stage 2, cancer had not spread, lymph nodes clean, and margins exceptionally clear. ER/PR positive (100% each), HER2 negative, Ki67 8%, and negative for the BRCA 1 and 2 genes. My treatment plan was breast conserving lumpectomy (tumor was at the 10 position), 16 days of whole breast radiation, 4 days of boosted radiation (completed May 6!), and anastrazole for 5 years; no chemo. I will be 60 next month. I don't know how each oncologist prepares the treatment plan. I didn't have any familial ties to breast cancer.

  • thetwins65
    thetwins65 Member Posts: 4

    Thank you sarahmaude

    Yes the steroids would be beneficial for my CRPS. Unfortunately not many MO or many MD’s in general know how to treat CRPS as it has no cure. The nerve endings are effected by any disturbance in the body and the body goes into fight or flight mode causing severe facial swelling, lesions and the body thinks the original surgical site which was my ankle that caused this rare disorder starts swelling up again. I had it under control until I had my lumpectomy. Everything started flaring again. My biggest fear is introducing harsh medication and having severe reactions. Just having my teeth cleaned lands me in the ER.
    it’s a concern.
    Thanks forthe input

  • thetwins65
    thetwins65 Member Posts: 4


    I am trying to navigate this site as again I am a newbie. I tried to fill out my complete profile. I had not received all of my information yet. Thank you for your input and my MO is aware of my CRPS hence why she did understand the direction I was going to perhaps skip the chemo even though it’s indicated as I am stage 1 but yes grade 3 very invasive. All of your assumptions are spot on. My fear is going into a raging flareup of CRPS. As I stated previously in response to another lovely woman, that even going to have my teeth clean lands me in the ER.

    I am researching Chemo/CRPS- not a lot of info out there as again, there’s no cure for CRPS and it’s very hard to treat

    That’s why my decision to decline chemo is not an easy one I’m still in a debate in my brain if my decision it’s correct. But honestly, do we ever know if it’s correct ??
    I was hoping that the targeted therapies and adjunct as mentioned would be sufficient and adding Radiation that also freaks me out with CRPS ?? - but I need to do it. I understand when his systemic and one is local. But I also understand that I’m stage one negative lymph nodes, and clear margins. So I’m keeping my fingers crossed and hoping I’m making the right decisions.
    Thanks for the input

    Many Thanks

    Newbie -Thetwins65 ( the 65 is because this was on my 65th birthday I received the news 2months ago that I had cancer - great BD gift )

  • thetwins65
    thetwins65 Member Posts: 4

    hey Texas Girl - texasaggie64

    Yup this is all new stuff and very confusing. We are in the same boat navigating the waters together. I wish you the best of luck and welcome to this site. It seems to be very helpful and I am finding some answers as I learn the in’s & out’s of this crazy stuff !!
    Sending you Strength and I hope you find answers