3 years on Tamoxifen: Feedback on Breast Cancer Index

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dazedandconfused123
dazedandconfused123 Member Posts: 61
edited May 2019 in Hormonal Therapy - Before, During, and After

Hi everybody! Hopefully all my diagnostic info. will pop up below like it did in the past. Diagnosed DCIS early 2015, 1st lumpectomy. At 6 month follow up, discovered IDC (grade 3), 2nd lumpectomy. Followed my clean SNB. Did one week of brachytherapy and started Tamoxifen May 2016.

I have hated the side effects from Tamoxifen since I started it. I have several other health conditions and the Tamoxifen has simply made everything worse (CFS, fibromyalgia, POTS, depression, anxiety).I am already disabled but the Tamoxifen has just made life miserable. . I am 50 and still menstruating (but barely). I try to lead a clean life and try to avoid medications whenever possible so I'm not sure I would be happy with an AI either. I have just been diagnosed with another serious (rare) condition which will require daily injections of medications; if successful, could really improve my quality of life. My husband (who I rely on for all my decisions due in part to my impairments) just doesn't think my body can handle one more medication. He has witnessed my deterioration while on Tamoxifen and thinks if I stop the Tamoxifen, I may be able to handle the other injection medication eventually.

I have discussed at length with my oncologist; between the horrid side effects and my low oncotype, he thought 3 years would be OK and that I would get the max benefit within that time period. Of course he would like for me to continue 5 years, but understands my dilemma.

At my recent yearly visit with my surgeon, she mentioned the Breast Cancer Index and ordered it. Of course a person is supposed to be on Tamoxifen for the full 5 years before taking the test so if I did it now the results will be skewed anyway. I've been on the fence as I'm not sure I'm willing to continue any hormone therapy so I'm not sure the results will influence my decision. Also it is super expensive and I have a high deductible insurance plan. Of course, I'll be eating crow if something happens down the line but....Hubby thinks I should forgo the test and get off the Tamoxifen asap.

For those who did the Breast Cancer Index test, did you find the results helpful? Did it influence your decision re treatment? Did your insurance cover? Any other advice for a super sickly survivor? Thanks!

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited March 2019

    You are really young to discontinue Tamoxifen. What if you went down to half dose for a while? What is the other med that your doctor wants to introduce? The CFS and Fibromyalgia could be helped by the old tricyclic antidepressants, which could help the side effects of Tamoxifen. Sometimes, a core depletion of seratonin and dopamine, can manifest as CFS and Fibromyalgia. To me, those two should be put in remission first, and then Tamoxifen resumed. Do you use a walker or wheelchair?

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited March 2019

    Hi Michelle in Cornland, I certainly feel old:( Halving the dose is a good idea. The CFS and fibromyalgia predated the cancer; I already take lexapro and LDN. I also had to go back on Tramadol after weaning off years ago. A remission would be wonderful but probably not likely(I've had both for 20+ years). The new medication is Strensiq for a rare condiition I was recently diagnosed with via genetic testing.

    Have you done the Breast Cancer Index test? I'd love to hear more personal experiences about it (other than what I found via search:)


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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited March 2019

    Beware of genetic tests predicting what you will encounter in your lifetime. They are an algorithm that suggests a probability. Until something can been seen on a film, bloodwork, palpated or biopsied, it is a risk and not a condition. I have done the major genetic testing for the breast cancer gene, and it was negative for all forms of hereditary cancers. I am in my 3rd year of Tamoxifen and plan to continue as long as necessary. I take two half doses of Tamoxifen, 10mgs distributed by Mayne and made by Teva. When other conditions arise, such as bronchitis, etc. I take that down to 1/2 dose until able to resume my full dose. I am very careful to not overload my liver enzymes. The LDN is also used to treat specific cancers, as well as fibro and cfs. Do you see an interventional pain specialist?

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited March 2019
    My oncologist ordered the BCI immediately after diagnosis just because I mentioned it to him after reading about it here. I did not ask him to do this so was shocked when it came back with high risk of late recurrence. (My Oncotype was 12.) The results also include whether or not extended therapy will be of benefit and for me, it said it would. I am taking Arimidex for 10 years if my bones can handle it. Some people have received a high recurrence risk, but little benefit of staying on the meds. My insurance did pay and even though I didn’t like the result, it convinced me to keep taking Arimidex even when I had difficult side effects at the beginning. I would get the test if I were you just to have more info.
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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited March 2019

    dazedandconfused123, I can't chime in with BCI info but I can say that this is your life and only you can say whether taking a medication is worth the side effects. Everyone is different and we have different levels of risk we are willing to take. My personal risk of recurrence without Tamoxifen is about 12%, while the side effects of the medication were debilitating for me (surprisingly). That's a risk I'm willing to take.

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited March 2019

    Hi Peregrinela, thank you. That's really good feedback. I have to admit I do love data. And I would probably regret not having it done and always wondering.

    May I ask what insurance you have and the allowed amount for the test? Like I said, I have a high deductible insurance plan so I essentially pay out of pocket until I meet the $3K deducible. I hate guessing if stuff will be covered etc.

    Thanks!

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited March 2019

    Hi Summer Angel! Thanks for your feedback! Was the 12% from the Oncotype or Breast Cancer Index test? Unfortunately I was already disabled before breast cancer. Tamoxifen just felt like it pushed me over the edge:(

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited March 2019

    The 12% was from the Oncotype. I did try to take Tamoxifen, and then tried a reduced dose. It just didn't work for me. I have a chronic condition, too, so I understand adding fuel to the fire with medication side effects.

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited March 2019

    Summer Angel, sounds like we may have similar Oncotype scores. My initial Onctotype test showed a DCIS score of 15; any local event (DCIS or Invasive) of 12%. My 2nd Oncotype (after invasive was diagnosed) was Recurrent Score Result of 9.
    I should really review those tests...I'm not sure I ever understood them (even though Dr. explained them a million times:)


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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited March 2019
    Dazed, I have Blue Cross insurance and I don’t think I ended up paying anything. You can call the company if you have questions. I believe it is Biotheranuticss or something like that.
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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited March 2019

    Hi Peregrinelady Wow, I just realized we had similar oncotype scores (I think). That really makes me pause as your results showed benefit. My oncologist has rooted for me the entire time; but 3 years has been my finish line since soon after I started.

    Re insurance, yes I have had several phone calls with the co...Biotheranostics or whatever. It has not been fruitful as I have a high deductible plan (which is a pain). Basically, they will accept whatever the allowed amount my insurance provides. But since I have a $3K in network deductible and a $6 out of network deductible, I would essentially pay out of pocket until I meet the deductible. Which is fine...but I much prefer knowing in advance what I will have to pay versus driving blind, having tests done and being surprised later. I may end up asking my doctor of she will preauthorize it through insurance...

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  • balance
    balance Member Posts: 49
    edited March 2019

    It was out of network for my health insurance. Biotheranostics appealed but it was denied. Unfortunatley I ended up paying $1200.

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited March 2019

    Thanks balance! Sorry to hear it was denied. I was informed by Biotheranostics that if it was appealed but denied, I would not owe anything. When was your test done? I wonder if the policy was changed.

    Was it helpful for you in deciding to continue treatment? Thanks!

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  • balance
    balance Member Posts: 49
    edited March 2019

    My test was done in 6/2017, but I wasn't billed until 9/2018. I thought that I recalled them saying the same thing when I inquired about cost. All they offered me was an application for financial assistance with payment based on income for which I did not qualify. In terms of usefulness, although my oncologist recommended the BCI, he ended up not continuing me on AI's after 5 years despite my BCI showing high risk with benefit from extended therapy...so in my case not so sure how useful it was. I've been on raloxifene for the past 2 years...so far so good, fingers crossed.

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited March 2019

    Thanks Balance. Interesting that recommendation was not to continue with AI's with those results. Yeah this billing / insurance stuff drives me nuts.


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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited March 2019

    I did 5 years on Tamox and then on Letrozole (Femara) for 2 before my MO ordered the breast cancer index for me. Before they would run the test I had to do financial "counseling on the phone. They edid tell me that insurance did not cover it they would appeal to the insurance automatically. I ended up paying under $10 for mine to be done. The test is super expensive though. They do have financial help as well I know.

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited March 2019

    Thanks bcincolrad! Was the test useful in your decision to continue/discontinue treatment?

    Yes I have done the financial counseling already and don't qualify (due to husband's income; I am disabled). I'm confused because they told me if the insurance denied the test, they would appeal (2-3) times. If still denied (after appeal process) I was told I would not need to pay at all. It would be much easier if I had a regular insurance plan rather than a high deductible plan.

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  • OC_Jane
    OC_Jane Member Posts: 5
    edited April 2019

    Dazedandconfused, I’ve seen a lot of pro-Tamoxifen folks here, but would echo SummerAngel in that you know your body best. I had to stop taking Tamoxifen after feeling extremely suicidal after the first start. Then the care team suggested that I try it again after a month. Same thing, but the feeling was so overwhelming that I vowed never to take it again. My TX plan was based on taking it for 10-yrs, as I still had regular menses (irregular now). Pls remember that you know your body best and you must be your own bestadvocate.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited April 2019

    My friend had that test and yes it is expensive. Her insurance company turned them down 2x but her husband persisted and they finally agreed to cover it after his third attempt. Her score was high so she had to take Tamoxifen for 10 years.

    I totally agree if the side effects are debilitating I would cease and desist. You have to have a quality of life. There are other meds out there that might be more manageable. I didn't have problems with Tamoxifen other than joint pain. I took it for 5 years. I'm always irritated at doctors who prescribe something that you can't tolerate but believe you should just suck it up. Really? Could they? Doubt it.

    Diane

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited April 2019

    Thanks OC_Jane for your feedback! What you are saying really resonates with me. Some folks are determined to push through symptoms no matter what. But I truly believe sometimes the body is rejecting the drug and telling us clearly the treatment is toxic for us. I'm so sorry you had such a severe reaction to Tamoxifen. I have had severe reactions to other meds in the past. Even certain classes of drugs I will never take again.

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited April 2019

    Edwards 750, Thanks for your feedback! I'm glad you didn't have bad side effects from Tamoxifen. I really need to get the low down on the insurance coverage for this test. Its so crazy how our insurance system works. Charge $5000 for a test and then HOPE insurance covers it? The Biotheranostics folks actually told me if the insurance denied the test I would not have any financial responsibility. Which would be preferred in my case as I have such a high deductible on my plan...

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  • herb
    herb Member Posts: 51
    edited May 2019

    I jsut got my test back Stage 1 N0 in 2015 on AI for 4 years. BCI test came back High Risk for Mets. score 7.8 out of 10 Still trying to wrap my head around this. There will be a long talk with onco in October about what we can do, It also said that my AI drugs will not reduce my risk by much if taken for 10 years. I'd get the test done.

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  • herb
    herb Member Posts: 51
    edited May 2019

    I just had my BCI done. score 7.8 out of 10 high risk but w/as told the AI drugs would not benefit me for another 5 year round. Do you know why high risk and no benefit from another 5 years?

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited May 2019
    Hi herb, I also received a high BCI score, but it said I would benefit from extended therapy. There is a thread about the BCI that I will try to find for you.
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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited May 2019

    https://community.breastcancer.org/forum/78/topics/802153?post_id=5383655

    If you type BCI in the search bar, you might find more information

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  • herb
    herb Member Posts: 51
    edited May 2019

    thanks that was helful

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