After breast cancer: 12 years out, questions about recurrence

I was prescribed it and Raloxifene. They both made me feel bad and I don't want to take them. I'll read up on aromatase inhibitors , but my oncologist is really good and I'll go with what he thinks is okay. He said I'm younger than my actual age.

I could not take Tamoxafin or any i hibitors. I was 40 when I was diagnosed with stage 3 BC. I did do genetic testing, came back unknown , not BRCA 1 or 2. I am not sure they had the test for survival expectancy or reoccurance through genetic testing. Just statistics. Mine was against my chest wall, so the margins of clearance were narrow.I probably shouldnt worry about it. Sometimes it is just hard not to wonder when you dont feel well and are losing weight.

I won’t say I had no side effects but I can do hot flashes to avoid more cancer.
Bone loss is not a given, but it is a risk with loss of estrogen. I was told keep your vitamin D and calcium up, and walk a lot. Weight bearing is one of the best things for your bones. I did eventually get bone loss in the spine but still none in my hips. If I had been given that advice earlier, I might still not have any bone loss.

Accelerated bone loss is absolutely a given with AIs. Aromatase inhibitors deplete estrogen by preventing its production. Estrogen helps bone cell turnover [old bone sheds, new bone forms] and helps protect the coronary system in some ways, and has numerous other functions still being identified. [Cognitive health thought to be among them, partly by maintaining endothelial tissue, ergo arteries' ability to rebound. But not yet established as fact.] Women who took hormone-replacement therapy frequently took it for these purported benefits of "estrogen protection."

So ridding the body of estrogen affects these processes. What isn't a given, is the rate of loss of protection. Someone with osteopenia might have faster bone loss than someone with advanced osteoporosis according to my endocrinologist whose practice is primarily osteoporosis and diabetes. And who was formerly with the NIH bone-renewal research section.

I declined aromatase inhibitors because of what estrogen depletion does. Time will tell if that was a mistake but my OncotypeDX showed a 5% risk of recurrence if I didn't take them or tamoxifen, which translates to a 95% chance of no recurrence within 9 years anywhere in the body. Being older helped here. As I see it, going on anastrozole also means going on an osteoporosis treatment. Soon thereafter if not immediately, depending upon age. Or if pre-menopausal, taking tamoxifen, which does not deplete the body of estrogen, though also has side effects to be aware of.

There are no longitudinal studies of women with breast cancer who decline meds. My surgeon is collecting anecdotal data among the older patients who are increasingly rejecting them. And looking to design a study as there's very little data about breast cancer among women over 65, many of whom are not even getting mammograms. So this is a kind of data-deficient area...

I'm kind of on the same page. I declined anastrozole but know there are people who have good reasons to take it, understand how it works and will keep a hawkeye on bone density and basic blood work and tumor markers to minimize risks. And who tolerate it well. And some people who don't tolerate it well but do fine with a different aromatase inhibitor.

Thanks for your comprehensive post as always. Do you have a medical background? It’s disappointing that we can’t get straight answers in a medically sponsored forum. Some of us are spreading misinformation and we don’t know it. Some doctors appear to be spreading misinformation which is totally unacceptable. This isn’t a book club. It’s life or death so we need to be sharing facts not just our opinions and feelings.

@callalloo: I see that you mentioned tumor makers. I brought this up with my oncologist just a few days ago, and according to her, tumor makers in general are not very accurate. They only “work” in about 60% of people, and elevated tumor markers can be signs of a variety of non-cancer related issues, so not a very useful predictive tool (as compared to PSA test in men - so unfair!!). I held my mother’s hand when she died of MBC at age 73, so I’m a little overly cautious. Even with fairly low onco score I went on Letrozole, and other than bone issues (should I say likely/potential bone issues) I have felt no side effects whatsoever from this medication. Future will tell…… if next DEXA scan in a year is really worrisome, I may discontinue.

I really feel that we need to be careful about scaring patients about taking a potentially life-saving medication. Those of us who have actually taken aromatase inhibitors may be posting for balance here. I am amazed at how many women are not taking these meds, out of fear of side effects- without even trying.

A 5% risk is considered high risk by the Prosigna Assay and Breast Cancer Index. For hormonal cancers, risk continues to rise and 5, 7, or 20 years of meds can decrease that risk over time.

I had hot flashes and bone loss the first year. Just as with menopause. Then my rate of bone loss levelled to the rate I had before meds. If you take an aromatase inhibitor, bone loss can be monitored and treated.

Due to a heart condition, my doc did not want to do Reclast and he does not use Prolia. So even though I had substantial bone loss/osteoporosis before an AI, I did 5 years without any meds and without any fractures. Osteoporosis is serious but should not be in the way of treating cancer, in my opinion.

Along with Oncotype, pathology can help guide decisions. But I know of stage 0 patients who had recurrence. Odds are low of course and grade 1 is better than grade 3. A high estrogen score would indicate that AI's might be very helpful.

I miss Femara, my security blanket. Now that I am on Tymlos (5 years after STOPPING Femara) I am going to ask if I can do two more years. They are saying 7 years is as good as 10 and both are better than 5.

Bone loss can be addressed. I would rather address that than cancer metastasis, but everyone is different. I just hate to see so many women decline meds without even trying them.

That's exactly why I was prescribed tamoxifen. Osteoporosis

People are free to assess their own risk profiles at will . Your experience is personal to you and is respected as such. I didn't bother mentioning a friend who was almost permanently disabled because an oncologist failed to mention the serious risks of Lupron injections for prostate cancer, both of which have a risk of greater than 32%; namely first time coronary event (!) and adult onset diabetes. We met with the oncologist later and his explanation was that he didn't want the patient to be wary of Lupron. Literally nothing gave that physician any legal or ethical right to "decide" which inconvenient information can be breezing not shared with a patient. We now triple-check known data ourselves. And fired the oncologist.

There is no comparing one genetic testing firm's risk result with another's. They may yield differing risk profiles depending upon genes selected as most significant, testing protocols and different statistical protocols. So while they may differ, there's no definitive statement that can be made about exactly why.

As to the OncotypeDX, Oncotype's website lists a few examples, one being, if I recall correctly, a patient who had in fact had a Stage 0, non-invasive, ER+, PR+, HER2- DCIS with a sentinel node negative biopsy. BUT, an OncotypeDX recurrence risk of 50+%. Which might be where the payoff of genetic testing for additional data. When I spoke with a scientist at Oncotype, he mentioned other cases like that where a clinical evaluation might suggest low risk and the patient not monitored more stringently because not thought to have a high risk of recurrence.

The website, or a link thereto, cited a case of a woman whose clinical estimate of risk would likely be high but the OncotypeDX, gave a recurrence risk of 8% and the cancer had been Stage 4 invasive. None of this stuff is foolproof, but the additional data can be extremely valuable for both physician and patient.

As to osteoporosis, well, there are drugs for it but, from reading osteoporosis threads here, and posts in this section, none of them are without other risks, sometimes very serious. They more address, than treat, the condition in my personal opinion. I'll change my mind if there's a drug that keeps bones healthy, resilient (not brittle) and renewing on a regular basis. And doesn't itself causes weird fractures, micro-, compression, or longitudinal. So I hope that I can forestall osteoporosis, well, forever. And hope that genetics can isolate the keys genes responsible as my endocrinologist and PCP both think it's primarily a genetics issue.