Can't take medication, unsure of options.

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Celand
Celand Member Posts: 264

Good Afternoon,

I was diagnosed with IDC/DCIS in October 2016. I was 51 years old and thought to be post menopausal from blood tests results from my gynecologist but later determined to be perimenopausal because I had not gone one complete year with out bleeding.

My oncologist had started me on Arimidex, which I took for about 2-1/2 months before my new oncologist switched me to Tamoxifen, which I took from June 2016 until April 2020 (when I fractured my ankle this past April I stopped taking this because I feared blood clots from my injury).

I ended up having surgery on my ankle September 1. I found out the day before my surgery that I tested positive for a genetic blood clotting disorder (Prothrombin G20210A) and was informed by my oncologist that I can not take Tamoxifen or Evista due to my testing positive because I am at high risk of blood clots or pulmonary embolism. (I just recently finished Lovenox injections following my surgery)

When I was taking Arimidex I had debilitating bone and joint pain, also have been diagnosed with arthritis, plus, I don't want to break another bone, so, oncologist doesn't think that I will be able to take an AI.

She mentioned that after my ankle completely heals that we can make an appointment to discuss my options.

What other options would there be if I can't take the anti hormone medication available?

Celand

Comments

  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited September 2020

    Celand, hoping your ankle heals after all you've been through. As to what might be available to you, I don't know but am interested in hearing what is offered!

    (((hugs for healing)))

  • Celand
    Celand Member Posts: 264
    edited September 2020

    Beaverntx,

    I searched thru the Forum to see if there were any posts from anyone who had been in similiar situation regarding being unable to take the anti hormonal medications but didn't find any.

    I will gladly share my oncologist's response once I meet with her when my ankle heals. Just goes to show you that how something like a broken ankle can result in a sequence of events and cause the house of cards to fall!

    Yes, I have been through alot with this. It has certainly been quite an experience for me.

    I am guessing that I might have to hope that I derived some type of benefit from the 3 years that I took medication and leave it at that. My oncologist did tell me that there are no guarantees even when the medication is taken for prescribed amount of time.

    Thank you for healing hugs!

    Celand

  • dtad
    dtad Member Posts: 2,323
    edited September 2020

    Celand...Hi there. Just want you to know I was diagnosed 5 1/2 years ago. You can look at my stats below. I never took an anti hormone for a lot of reasons. However I did lose 30 pounds and try to exercise everyday. This combination has been shown to lower recurrence rates by 40 percent. I also take several supplements to help lower my estrogen levels naturally. Please LMK if you have any questions and good luck!

  • Celand
    Celand Member Posts: 264
    edited September 2020

    Dtad,

    Wow! I definitely could stand to lose weight, I used to be able to drop pounds quickly when I was younger, from my late teens to mid 40's, by exercising, especially aerobics class, not really adjusting my diet. But now that I am in my 50's that strategy for weight loss no longer works. I have lost a little bit of weight since I stopped taking Tamoxifen in April. Just have to be careful not to get overheated when I exercise or it causes problems with my hyperthyroidism. I will probably go swimming and walking at indoor pool and track facilities, I have access to both.

    For supplements I take Fish oil, Vitamin C, Centrum Silver 50plus, Caltrate D, and now a baby aspirin each day. I do occasionally use Tumeric to season my steamed vegetables and organic flaxseed as addition to oatmeal or smoothies.

    My intention was to get back on medication once my ankle completely healed, but since my medical issues changed it puts a new twist on things and the approach that I now must take to minimize the chances of recurrence or a new cancer forming. But there are no guarantees, whether I take the medication or not. Perhaps I should browse the forum for Alternative Treatments?

    Thanks for responding!

    Celand

  • Celand
    Celand Member Posts: 264
    edited September 2020

    One thing that I forgot to mention is that my Oncology is actually a DO (Osteopathic dr) so maybe she might have some additional suggestions regarding alternative treatments for me to try.

    Will post what she tells me when I meet with her next time.

    Celand

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2020

    Celand, reading about your situation, the question for me would be "what is the distant recurrence risk you face with no additional treatment?"

    It appears that you had a small (<1cm) grade 1 tumor that is HER2-. What makes your staging Stage IB versus Stage IA? Did you have any nodal involvement? And did you have an Oncotype test done? How large was the invasive portion of your tumor? - that determines both the staging and whether an Oncotype test would be appropriate.

    While your MO is the doctor who should be giving you information about your risk level and the benefit from Tamoxifen or an AI, there are computer models out there that provide a good estimate. Here's a link to one of them:

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

    Generally, endocrine therapy (Tamox or an AI) will reduce distant recurrence risk by approx. 1/3. I don't have all your information, but when I input the info you have provided - age 51, tumor size of 1cm (I'm assuming the 1cm is all invasive - the DCIS portion should not be counted for this model), ER+, PR+, HER2-, grade 1 and then assume that you were node negative, the 15 year cancer mortality rate is 4.4%. This is the result with no chemo and no endocrine therapy. When I add in hormone therapy, the 15 year cancer mortality rate goes down to 3%. So hormone therapy provides only a 1.4% risk reduction over 15 years.

    The numbers are a bit different if you are node positive. Inputting the same information but adding in that there was 1 positive node, the 15 year cancer mortality rate is 11.2% with no chemo or endocrine therapy. By taking an AI, this is reduced to 7.6%. So if you are node negative, then the risk reduction benefit from hormone therapy is 3.6%, which is certainly more compelling.

    I'd say that before you start looking for other risk reduction treatment options, you should be sure that any treatment is worth it to you, with consideration to the side effects and based on how much it can reduce your risk. As dtat points out, both weight loss and exercise have been shown to reduce recurrence risk. Given your other health issues and your seemingly very favorable diagnosis (particularly if you were node negative, which is unclear), that might be sufficient to bring your risk down to about as low as it can be with any invasive cancer diagnosis.



  • Celand
    Celand Member Posts: 264
    edited September 2020

    Beesie,

    Your question sums up what I need to ask my dr to compute for me.

    My Oncotype dx score was a 5. I am not sure why I am classified as 1B instead of 1A, surgeon who did my lumpectomy said none in my lymph nodes.

    The size of my tumor was .8 but half was DCIS so IDC .4

    Thank you for responding, you have given me things to think that I had not thought of.

    Celand

  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2020

    celand - something you might consider is doing a BCI (Breast Cancer Index) test. This is a genomic assessment (done on removed tumor material preserved after your surgery) at the five year point to help determine whether to continue taking anti-hormonal meds beyond that. I mention it because the test result provides information on both recurrence risk and effectiveness of the medication on your tumor. This could add to the conversation if your risk is low and the benefit from the drug is also low. Even though you are not at the five year point yet,doing this test early might provide information that helps you make decisions and/or provides some peace of mind.

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2020

    Celand,

    Staging is not subjective; it's universal and not something a doctor gets to decide. So if your invasive tumor is 4mm and you are node negative, then you are Stage IA.

    Since you have an Oncotype score, it is easy to do backwards math to determine the benefit of endocrine therapy. While I don't have your report, using this chart from the appendix of the TAILORx study (on which the Oncotype recurrence rates are based), it appears that an Oncotype 5 score equates to approximately a 3% 9-year risk of metastatic recurrence, assuming that the patient takes endocrine therapy.

    image


    On average, endocrine therapy reduces metastatic recurrence risk by 1/3, i.e. 33%. This means that if you opt out of taking endocrine therapy, with an Oncotype 5 score, your 9-year metastatic risk will be 4.5% (3% being a 33% reduction off 4.5%).

    Obviously you need to get these figures from your MO, rather than rely on what I've provided. But if my figures are accurate or close, the question is whether you can live comfortably (as much as any of us can after a breast cancer diagnosis) with a 4.5% risk. Or are you okay to risk side effects and health issues from risk reduction therapy in order to reduce your risk to 3%?



  • JRNJ
    JRNJ Member Posts: 573
    edited September 2020

    celand, I read about Salamandra who is taking farestronan alternative. Don't know much about it. I'm currently struggling really bad with AIs and don't know what to do. Dr appointment tomorrow.

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