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After breast cancer: 12 years out, questions about recurrence
Breast Cancer | Last Active: Jul 1, 2022 | Replies (79)Comment receiving replies
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.
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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.