Hormone therapy

Ceucha24
Ceucha24 Member Posts: 16 Member

I was diagnosed with DCIS stage 0. Had lumpectomy in 2023 and 22 sessions of radiation after surgery.

I had been on Anastrozole with horrible join aches then I was changed to Letrozole but I did not tolerate it as well.

I am going to give my body 2 to 3 weeks off medication and try Tamoxifen 10mg.

Any suggestions? Tips? Support please?


thank you kindly.

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Comments

  • LIYAH
    LIYAH Member Posts: 13 Member

    Re: Hormone Therapy Options - DCIS

    Good Afternoon Ceucha24,

    Understandably, you're looking for the best hormonal therapy option after experiencing side effects from Anastrozole and Letrozole.

    Here are some suggestions and things to consider:

    • Discuss your concerns with your oncologist:
      • Clearly explain the side effects you experienced with Anastrozole and Letrozole.
      • Discuss your concerns about potential side effects of Tamoxifen.
      • Explore all available options with your doctor, including potential side effect management strategies.
    • Consider a lower dose of Tamoxifen: You might start with a lower dose of Tamoxifen and gradually increase it if tolerated.
    • Discuss side effect management strategies:
      • Hot flashes: Over-the-counter medications, such as low-dose antihistamines or herbal remedies (consult your doctor first), may help alleviate hot flashes.
      • Vaginal dryness: Water-based lubricants and vaginal moisturizers can help.
      • Bone health: Discuss bone health supplements such as calcium and vitamin D with your doctor.
    • Lifestyle modifications:
      • Regular exercise: Moderate exercise can help improve mood, reduce hot flashes, and maintain bone health.
      • Healthy diet: A balanced diet rich in fruits, vegetables, and calcium can support overall health.
      • Stress management techniques: Relaxation techniques such as yoga, meditation, or deep breathing can help manage stress and anxiety.

    Remember:

    • This is a personal decision. You have the right to make an informed choice about your treatment plan based on your circumstances, values, and risk tolerance.
    • Your oncologist team is your best resource. They can provide you with personalized guidance and address any specific concerns you may have.

    I hope this information is helpful.

    I wish you all the best in your journey.

  • Ceucha24
    Ceucha24 Member Posts: 16 Member

    Thank you Liyah, I hope this one finds you well.

    I appreciated your feedback. I hope we will all breast cancer survivors have a wonderful 2025.

  • ApotosisDude
    ApotosisDude Member Posts: 3 *

    Sorry that you are going through this. For DCIS stage 0 that sounds like a very aggressive treatment regiment. Did you have a high KI-67 or something like that on your path report?

  • Ceucha24
    Ceucha24 Member Posts: 16 Member

    Thank you for your encouragement. Where can I find this info? On the radiology report? Biopsy or gen results report?

  • ApotosisDude
    ApotosisDude Member Posts: 3 *

    KI-67 speaks to the cancer cell division rate, in other words how fast it will grow as a tumor. Should be on your pathology report from lumpectomy. Probably not on biopsy.

    Should be referenced as something like “Ki-67 Percentage of Positive Nuclei”. My wife’s is 40%, which is fairly agressive and cause for concern. Anything above 30% is high risk. Ranges are from 1 to 90… with around 20 being average.

  • Ceucha24
    Ceucha24 Member Posts: 16 Member

    thank you much again. I have the lumpectomy report but I looked for Ki-67 and couldn’t find it.

    I texted my Oncologist and asked for it or any info.

    I believed I have been over treated but I am doing some research and you made me thinking about being over treated. My quality of like was ZERO when I was on these aromatase inhibitors. I just stopped taking.

    I hope you are doing well on your journey and if I can help you somehow.

    Cant wait to here from my Oncologist.😀

  • tarams602
    tarams602 Member Posts: 21 Member

    hello,

    I’m wondering exactly what this number is you’re taking about and does it apply to a double mastectomy as well. I had a DM, lymph nodes clear, taking estrogen blocker right now. Please let me know more information on the ki-67! Thanks in advance.

  • Ceucha24
    Ceucha24 Member Posts: 16 Member
    edited January 3 #9

    When I here back from my Onco I will post the answer here.

    Mastectomy or DM was not necessary in my case bc my gen results came back twice negative so do not carry it as my family has a long history of CA.

    Mine was stage zero and I opted for lumpectomy.

    Radiation was tough and I had fatigues. The most hard part is the estrogen blockers. The side effects on me were horrible and I had no life so I opted to drop it. They offered Tamoxifen but I cant bc another medication I am on.
    I am doing some research and I will try also alternative medicine.

    Hope this one finds you well.

  • tarams602
    tarams602 Member Posts: 21 Member

    I also have a history in my family but BRCA cane back negative. I could if fine lumpectomy but I opted for a DM. Mine was stage 2. I did one Lupron shot. I’m supposed to take 3 more and eventually start Anastrazole. I’m a little leery still and just not sure if I should or shouldn’t. My onco score is 26. Cancer free right now so this is all for preventative measures. Can you tell me why you felt this way about the estrogen blocker you were taking and how long you were on it. These decisions are very hard to make.

  • Ceucha24
    Ceucha24 Member Posts: 16 Member

    I had severe joint pain to the point that I could not move my right leg, no bend over, seat and stand back up was difficult plus I had bad muscle pain and I could not sleep and also I refused to be taking Ibrufen everyday. Then my Onco took off of Anastrozole after 8 months and put on Letrozole, after 2 months on it I could tell that I was going on same direction. It was too painful to live like that.

    Since I was stage zero and no aggressive CA and had radiation session I decided to stop taking it.

    I am doing my best for the next 4 years as far as diet, exercises, stress free and taking my supplements.

    I am ER but I cant tolerate the medication. If I had CA in advance stage I would not have stopped it because the risk is higher.
    does that make sense to you?

    Do your research and it is all about quality of life and your personal decision.

  • ApotosisDude
    ApotosisDude Member Posts: 3 *

    Sure. It’s possible that when they did your double mastectomy that did a pathology report on the initial tumor and if there were any others that they came across. They would have profiled the tumor as ER Positive, for example. Along with this they would have visually inspected Ted a cross section of your tumor to see how many cells out of each hundred were currently in the state of dividing … or cloning themselves. This is called the KI-67. If they only saw 10 out of every 100 actively dividing that would be a much more favorable number than 50 out of 100… (or 50%). Your oncologist will be able to tell you how to discover this number on your path report. Hope that helps.

  • Ceucha24
    Ceucha24 Member Posts: 16 Member

    my Onco called and said that I do not have Ki—67 on my report bc I had DCIS in Situ. It was in the milk duct and not invasive and stage zero.
    so I think now I feel much more confident and not doing the ER therapy since I cant tolerate this strong drug.

    Thank you for your input on saying that I was on strict regiment. Hope all will be well with your wife and if you guys need support we are here.

  • tarams602
    tarams602 Member Posts: 21 Member

    I’ve tried looking at my pathology reports but cannot seem to find anything. Is there a certain spot I should be looking? I can ask my oncologist as well. Thank you for all the information no really appreciate it.

  • tarams602
    tarams602 Member Posts: 21 Member

    hi yes this all makes sense. I’m only on my second Lupron shot as of Monday and will start anastrazole in March. I am cancer free right now not in my lymph nodes either. Only doing this for preventative measures and due to onco score being 26. I will try it but I will not allow it to ruin my quality of life. I was stage 2. I eat well and take supplements too. I agree it’s definitely a personal decision but it definitely helps asking questions in these groups. Thank you.

  • Ceucha24
    Ceucha24 Member Posts: 16 Member

    I had to research over and over and asking question around here and order groups. Even Youtube has a lot of videos and I believe we are on the same page about that.

    I know it is a struggle decision and we always wondering if it comes back. Even though, we had different CA stages the struggle is real. Let me know if I can help in any ways.🌷

  • tarams602
    tarams602 Member Posts: 21 Member

    I do research as well and of course you hear good and bad things so you’re absolutely right that it’s a personal decision. Did you take anything to deal with your pain…natural solutions or anything prescribed? I really like to try to go natural if I can. I’m almost scared to take it and to not take it, if that makes sense. I believe I’ll try it and if it turns out to be giving me too many side effects, then I come off of it. Continue to eat well, exercise, take my supplements, and pray for the best. I honestly feel 5-10 years on this is a long time and could cause long term effects as well I guess it’s possible I heard it could come back in your ovaries. Im even considering removing them as an extra preventative measure.

  • Ceucha24
    Ceucha24 Member Posts: 16 Member

    one thing I can tell: some women are doing okay with HT, I also have a friend that is on and she is okay with mild pain in her feet. So you might want to try and be totally fine. I read also that some women do very good with Anastrozole and some dont but can tolerate Letrozole. So I would say: Try it and you might be fine. 🙏

    Tamoxifen you can try half dose then go higher if you can tolerate so that is another option. Talk to your Oncologist about it.

    I have not read anything about getting CA in the ovaries so that is new to me.

    As a supplement I take Turkey tail mushrooms. Read about it and let me know.

    Also watch youtube videos from Kathleen Moss she is a great support and suvivor.

  • tarams602
    tarams602 Member Posts: 21 Member

    I’m definitely going to give anastrazole a try. I had my second Lupron shot today and bloodwork as well to see where my estrogen levels are. When there at the right level, I will start anastrazole. You’re right … all I can do is try and hope all goes well and that is what I will do. I really appreciate your answers. They’ve been very helpful. Worse case scenario, like you said , I can switch to tamoxifen. I take supplements as well. Turkey tail I’ve recently been hearing about it. I will read about it and take it if it helps. I take my multi, black seed oil, magnesium and zinc, cherry tart extract, vitamin C and D and eat organic as much as I can. We try and do the best for ourselves. Thank you again. You’ve been very helpful and I’d like to continue speaking if that’s ok 💕🤗

  • Ceucha24
    Ceucha24 Member Posts: 16 Member

    off course! Let’s keep in touch here whenever we can.

    Yes, try them all first and see which one fits you. Just dont forget to have bone density done before take it bc these pills may cause bone loss.

    Also take a good calcium supplement with them.

    I am taking all the above……you remind me to buy Tart Cherry….I am running out.


    Live in Clearwater, Fl and hopefully I will be able to retire and focusing in my well being as a whole.

  • tarams602
    tarams602 Member Posts: 21 Member
    edited January 7 #21

    definitely 💯 would love to keep In touch. I already did bone density test and it came back. My bones are strong right now … no issues with that. I will definitely look into a calcium supplement as well. I plan on purchasing fish oil. I also have been reading a lot about soursop. I did purchase teabags. I just haven’t received them yet. I received my second Lupron shot yesterday and today I feel a muscle spasm behind my left side rib cage more towards the back … did you ever experience this? It keeps on spasming off n on. I tried Tylenol but eh only does so much. I also put heating pad on.