What if you have serious osetoporosis PRIOR to AI therapy?

Options

My mom, who is 80, and has IDC had a dexa scan that showed that her spine T-score was -3.1 (Z score -.4)

The Dr who ordered the scan said that was 99%worse than people her age ( she is 80). Not sure i believe that though...

Anyway, her oncologist is going to start her on either AI or tamoxifen. She seemed to favor AIs (WHY?), but wants us to see an endocrinologist first.

Do you think its dangerous to put someone with osteoporosis on an AI rather than Tamoxifen? Another doctor we consulted with said tamoxifen was the better choice because it reduces fracture risk.

Is anyone aware of someone being treated for osteoporosis PRIOR to even starting hormonal therapy?

Would an endocrinologist say whether AIs are even an option? What info would endo be giving us?

Sorry for my million questions! Thanks all

«1

Comments

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    Seems like a very vaild concern, HereToHelpMyMom. I don't have the answers, but hopefully others more familiar with Osteo and AIs will be on to share their experiences. I think from my reading in prep for my own DEXA scan and transition to AIs, that I recall tamoxifen being associated with less fracture risk than AIs. However, I think I also recall that there are other treatments that can coincide/support treatment with AIs to manage the Osteoporosis. Again, sorry I'm not much help, but wishing you both the best in her journey and decision making....at least I can bump your thread and hope others with more info will be by soon. Hang in there.

  • edj3
    edj3 Member Posts: 2,076
    edited June 2019

    I'm postmenopausal, with HR+ breast cancer. Normally I'd be put on the AIs but because I have osteopenia (nothing like your mom's values, mine are all around -1.5) AND because I fractured my pelvis last year from running, my MO has ruled out the AIs.

    Like your mother, my MO has referred me to an endocrinologist for the osteopenia/broken bone issue.

    I would definitely have your mom go to that appointment, see if the endo wants her on scripts for the osteoporosis. Then the AIs might be just fine.

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    The question isn't an AI vs. Tamoxifen. The question is whether any endocrine therapy is beneficial. An Oncotype of 9 equates to no more than a 3% risk of mets, assuming endocrine therapy. This means that without endocrine therapy, the risk is 4%. The risk of serious side effects from endocrine therapy for someone age 80 is higher than the 1% metastatic breast cancer risk reduction that endocrine therapy would provide.

    I'm pretty certain that my MO, who specializes in the side effects of cancer treatments, would refuse to prescribe either an AI or Tamoxifen to an 80 year old patient with an Oncotype score of 9.

  • edj3
    edj3 Member Posts: 2,076
    edited June 2019

    Beesie , in my case and I suspect in HereToHelpMyMom 's case, I'm seeing the endocrinologist for the osteopenia. Or were you saying something else and I misunderstood?

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    edj3, what I am saying is:

    "Why subject an elderly patient to all the risks of endocrine therapy (whether Tamoxifen or AI) when their risk of metastatic breast cancer is already so low based on having such a low Oncotype score, and would only be reduced by 1% by taking the endocrine therapy".

    For someone of this age who has such a low riskof mets based on the Oncotype score, who could suffer greatly and seriously from the side effects, the risks from the treatment are greater than the risks from the disease.

    Edited (italicized words added) to provide clarity that I am not suggesting that endocrine therapy is inappropriate for all elderly patients but am questioning the rationale for endocrine therapy in situations such as this one where the risk of mets is so low that the risk reduction benefit from the meds will possibly be lower than the serious health risks the patient is exposed to from the meds.

  • HereToHelpMyMom
    HereToHelpMyMom Member Posts: 38
    edited June 2019

    I thought the 1% risk reduction was in reference to the benefit of chemotherapy when the patient is on endocrine therapy. Does the Oncotype test also indicate the level of risk with endocrine therapy vs NO endocrine therapy? Confused

    Thanks all for responding!

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    No, the Oncotype test does not indicate the level of risk reduction with endocrine therapy. But many studies have been done over the past 2 decades on the efficacy of endocrine therapy. Endocrine therapy on average reduces the risk of a metastatic recurrence by 30% - 35%.


  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2019

    From what I have seen in studies tamoxifen vs AI treatment er + pr+ cancers the benefit is about the same. I think tamoxifen should work and not hurt her bones.

    It is er+ pr- cancers that benefit the most from AI drugs.

  • HereToHelpMyMom
    HereToHelpMyMom Member Posts: 38
    edited June 2019

    Im not sure I understand why we think endocrine therapy is less beneficial for someone with a low oncotype, if the oncotype doesnt indicate this. Why do you think its ill-advised for someone who is 80? I am very wary of the risks for her, but a 30% reduction of recurrence risk seems significant. What am I misunderstanding? Thanks!

  • Salamandra
    Salamandra Member Posts: 1,444
    edited June 2019

    Like Beesie, I was surprised that her doc is recommending endocrine therapy at all. Unless your family generally has super long longevity or something... In addition to the endocrinologist, a second opinion from another MO, maybe one with more experience treating elderly patients, seems in order.

    But Beesie, follow up question. You said, "An Oncotype of 9 equates to no more than a 3% risk of mets, assuming endocrine therapy." Is that adjusted based on her age? Because I was also 9 and my report gives me a 6% risk of mets over 10 years.


  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2019

    I was in my 50s taking anastrozole and exemestane and I suffered bone loss but nothing earth shattering. My bone density scan is acceptable for someone my age. If I were 80 years old and already had significant degradation, I would ask why AI drug over tamoxifen. Tamoxifen has some risk factors as well but I would make sure they explain why one drug was better than the other.

    If your Mom was er+ pr- I might understand, but she is er+ pr+.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited June 2019

    HereToHelpMyMom,

    The benefit of endocrine therapy is relative to the risk.

    So if someone had a 50% risk of mets, that gets reduced by 30%, so then they only have a 35% risk of mets. That's an absolute benefit of 15%.

    If someone had a 5% risk of mets, that also gets reduced by 30%, and then they only have 3.5% risk of mets. Same percentage of reduction, but their absolute benefit is only 1.5%.

    People would justifiably be willing to put up with a lot more side effects to reduce their risk by 15% versus 1.5%.

  • HereToHelpMyMom
    HereToHelpMyMom Member Posts: 38
    edited June 2019

    Salamandra, I see, but the Oncotype appears to only tells you the risk of mets WITH only endocrine or with endocrine plus chemo. It doesnt indicate risk with NOTHING, as far as i can see. My moms says oncotype score is 9, risk of mets with JUST endocrine is 3%, if she has chemo PLUS endocrine it is reduced less than an additional 1%.

    For all I know, her risk WITHOUT endocrine is 20, 30, 40%. If the avereage redustion risk with endocrine is 30%, who knows? All this Oncotype test seems to list is how the risk will be WITH endocrine and with endocrine plus chemo.

    If theres anything i'm missing, please tell me, because if i knew that endocrine therapy would not be much of a benefit, i would want to know.

    Thanks everyone for chiming in. its very confusing

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2019

    I question why my benefit was only 1% on risk calculation tools, I was er+ 95% and pr negative 0%. My oncologist said taking all factors into consideration my benefit was low. My risks of mets was 23% taking tamoxifen probably 15% doing AI drugs. Never heard what my what my risk was taking neither. Doing chemotherapy my risk could have been reduced to 10%.

    Now oncologist thinks my risks now are below 10%, from my reading er+ pr- cancers tending follow triple negative as far as recurrence behavior. But I wonder, most of the studies I have read er+ pr- tend to have weakly positive er and higher grade. My cancers were grade 1 & 2. I worry about the slow growth aspect and wonder if they may recur later.

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

    Bessie, my MO does not prescribe endocrine therapy for those with early stage disease, over 80 years of sge

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    Salamandra, yes, age matters. Especially for someone 80. The life expectancy of an American female aged 80 is 9.74 years. The average 80 year old female has a 32% chance of surviving only 5 more years, and a 68% chance of surviving only 10 more years. The Oncotype score (as shown in the TAILORx report, see below) reflects a 9-year risk of mets. So some of that percent may not be relevant for someone aged 80.

    That said, did you receive your results pre- or post-TAILORx? Because according to the TAILORx report, even those under age 50 with an Oncotype score of 9 do have a lower risk than you mentioned. Here is the chart from the appendix of the NEJM article from last year:

    image


    In response to a different comment above, the relative benefit of endocrine therapy (a 30% - 35% risk reduction) is NOT lower with a low Oncotype score. If anything, if someone is highly ER+ and PR+, which would drive a low Oncotype score, the relative benefit will be on the higher side.

    But treatment decisions - for all treatments, not just endocrine therapy - are usually made* based on a benefit vs risk assessment for the individual patient, looking at the absolute benefit the patient receives from the treatment. The absolute benefit of any treatment depends on what the patient's risk level is to begin with. *by the MO and the patient talking together, incorporating the patient's health history and other health issues

    On average endocrine therapy reduces the risk of mets by 33%. This is the relative risk reduction benefit.

    33% of 0 is 0. 33% of 9 is 3. 33% of 60 is 20. 33% of 90 is 30.

    It's the same 33% relative risk reduction benefit in each calculation, but there is a very different absolute benefit depending on the risk level that the patient starts with, before taking this treatment. So while every patient might get the same "30% risk reduction benefit", for one patient the absolute benefit might quite large, making the treatment very much worthwhile, while for another patient the absolute benefit might be very small, with the risks from the treatment itself outweighing the benefits.

    Edited to clarify/simplify the explanation of relative risk vs. absolute risk.


  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2019

    Beesie, do you know of anywhere you can find your risk without treatment just surgery for hormone positive cancers?

    I was under the impression overall risk is about 30% for doing surgery alone but that is combined for all early stage breast cancers.

    Just curious if you have run accross something I haven't seen.

    I should have mentioned my reduction to 10% on oncodx score was assuming chemo such as CMF and taking tamoxifen. The oncodx scoring and risks are taking into consideration you will take tamoxifen. I have been assuming my risk of recurrence doing nothing but surgery was about 30% but could it have been higher?

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    I found this post by BarredOwl in response to Misty679, to be very helpful in understanding more about what a Oncotype report meant:

    image


    This, from Oncotype itself, is how to read their reports:


    CLICK ON "START REPORT GUIDE"


    image

    image


    image


    image


    image



  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    Yes, it is correct that the Oncotype report only states the risk of mets with Endocrine therapy alone, or with Endocrine therapy and chemo.

    But it's not difficult to estimate, with a fair degree of certainty, the risk without endocrine therapy. Endocrine therapy on average reduces the risk of a metastatic recurrence by 30% - 35%. This has been verified in many studies over the past 2 decades. This means that if the risk level with Endocrine therapy is 3%, it is impossible for the risk with no treatment to be 20%, 30% or 40%. To get a risk of 20% down to 3% would mean that endocrine therapy would be reducing the risk by 85%. To get a risk of 40% down to 3% would mean that endocrine therapy would be reducing the risk by 92.5%. While there might be some fluctuation in the 30% - 35% risk reduction figure, there isn't going to be that much fluctuation. Considering a reasonable range of fluctuation, a 3% risk of mets with endocrine therapy will translate to around a 3.7% - 5% risk without.

    To put it another way, the way the Oncotype score works is that it assumes the standard benefit for endocrine therapy. Someone who has a 40% risk without endocrine therapy is going to be getting a very high Oncotype score, and a recommendation for chemo in addition to endocrine therapy.

    Meow, I think the information you are looking for will be too variable depending on the size and pathology of the tumor, as well as the age of the patient. Surgery alone will result in a low risk for one patient but a high risk for another. Averages will be misleading.

    Relevance of breast cancer hormone receptors and other factors to the efficacy of adjuvant tamoxifen: patient-level meta-analysis of randomised trials

    - A summary of 20 trials done on Tamoxifen.

    - "In oestrogen receptor (ER)-positive disease (n=10,645), allocation to about 5 years of tamoxifen substantially reduced recurrence rates throughout the first 10 years (RR 0·53)" In other words, a 47% reduction in recurrence over 10 years, based on taking 5 years of Tamoxifen. Note however that this includes all recurrences, both local and distant.

    - "Breast cancer mortality was reduced by about a third throughout the first 15 years (RR 0·71 [0·05] during years 0-4, 0·66 [0·05] during years 5-9, and 0·68 [0·08] during years 10-14; p<0·0001 for extra mortality reduction during each separate time period)." This finding better reflects the results relative to distant recurrence, with breast cancer mortality reduced by approx. 1/3 over 15 years, for those who took Tamoxifen for 5 years.

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    spoonie, the one problem with BarredOwl's response is that she took your MO at his word when he said that "the risk would be approximately double". Your MO was correct when it comes to the expected overall recurrence rate, which would be expected to approx. double if a patient doesn't take endocrine therapy. But the recurrence rate measured by all the major research studies has lumped all recurrences, local and distant, in together (i.e. they measure DFS, disease free survival). The Oncotype score specifically looks at only distant recurrence. This figure does not appear to be readily available in the research (maybe it is somewhere but not in any studies or articles I can access on-line). However as per the Tamoxifen research I referenced in my previous post, if you use 'mortality rate' as a substitute for 'distant recurrence', which seems reasonable if you are measuring mortality rate over an extended period of time (since those who develop a distant recurrence will hopefully survive for many years), you can see that the risk reduction benefit for distant recurrences is in the range of 1/3. So an Oncotype recurrence risk would have to be increased by 1/3 (not doubled) to estimate the recurrence risk if the patients chooses to not take endocrine therapy.

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    Thanks for the explanation Beesie, as always very informative. :)

    FYI, I did edit my post to make sure it's clear that BarredOwl's post was in response to another member, not specifically to me.

    FWIW, back in Feb, I did ask my own MO about my MERs/Rrisk if I'm not able to tolerate any kind of endocrine therapy, she told me it would be 28-35%. My Oncotype gave me a score of 17. Which seems to fall in line with the 1/3 you were outlining Beesie. For me, I have confidence in her and her statement, given my young age, health history, and my own tumor specifics.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited June 2019

    I had my first Dexa scan the same day as the mammogram that found cancer last year. According to that scan, I have osteoporosis in a couple places. When I was discussing anti-hormonals with my MO, I expressed reservations about AIs due to some other health problems, so she said let's do Tamoxifen. This was an easy decision because I had a thorough hysterectomy years before. My BS mentioned that Tamoxifen actually helps repair bones over time. But I'm 69, not 80.


  • letsgogolf
    letsgogolf Member Posts: 263
    edited June 2019

    I am confused. Have they recently changed the Oncotype recurrence ranges? I ask because 2 years ago my score was 3 and my chance of recurrence was 4% at 10 years. Now it seems those with a score of 9 have a 3% chance of recurrence. Having trouble understanding the change.

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    letsgogolf, yes, they have changed the recurrence risks associated with the Oncotype scores, as a result of the TAILORx study that was released at this time last year. See my post above with the graphs showing the study findings.

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019


    Relevance of breast cancer hormone receptors and other factors to the efficacy of adjuvant tamoxifen: patient-level meta-analysis of randomised trials

    This is the full report of the study I quoted earlier. Lots of information about the recurrence risk reduction benefit and mortality reduction benefit (i.e. risk of mets) of Tamoxifen.

    With regard to side effects, in the conclusion, it says:

    "Although age is not a strong independent correlate of distant recurrence or of tamoxifen efficacy, being young is a major determinant of the gain in life expectancy from avoidance of distant recurrence. Worldwide, half of all patients with breast cancer are younger than 55 years when diagnosed. For premenopausal or perimenopausal women with ER-positive breast cancer, tamoxifen is a major hormonal treatment option (because ovarian function cannot be controlled by aromatase inhibitors), and there is little uterine cancer risk or excess risk of fatal pulmonary embolus from administration of tamoxifen before age 45 years or at ages 45–54 years. By contrast, for older women with an intact uterus the excess risk of death from endometrial cancer or pulmonary embolus could well be about 1%."


  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    An FYI, to those who have been following this thread, that I've edited a couple of my earlier posts to provide clarity about endocrine therapy and elderly patients, and about relative vs. absolute risk.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2019

    Unfortunately, my SIL was one of those rare cases she died August 2017. She developed endocrine cancer and her doctor was not paying attention she could actually feel her tumors, it was too late. She was 56 years old. Be careful if detected early enough it could mean the difference between life and death.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited June 2019

    Thanks so much for all this explanation. My oncotype was from November 2018, so I believe after the TailorRx.

    image

    image

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    Salamandra, it appears that although the TAILORx study had been released, it was not yet incorporated into your results. Note that your prognosis chart indicates "from NSABP-14", which was the original study used to determine the Oncotype scores.

    The report today would indicate that the results are from TAILORx and NSABP-20 (for chemo benefit).

    image


  • Salamandra
    Salamandra Member Posts: 1,444
    edited June 2019

    Huh. Is it possible to get a re-run of my results that incorporate the newer info, I wonder?

    I'm having a really tough time on tamoxifen, and considering coming off. I have an appointment with my MO next week. I definitely need to understand my risk profile better to decide whether to try OS+AI, to risk a lower non-standard-of-care tamoxifen dose, or whether I have the kishkes to come off the tamoxifen altogether and take my chances.

    Thank you SO much.

Categories