Nervous to start
Hi all,
My 62 year old mom is post lumpectomy and is in the middle of radiation now and will be discussing her anti-estrogen treatment next.
She seems more nervous about this than any other part of treatment. She keeps saying "do I really need this?" Or "should I have just gotten a mastectomy?"
I'm definitely not sure what to tell her. Can anyone point me to some studies for stage 1 cancer and using AIs vs not using them vs mastectomy instead?
She had 2cm DCIS with a 5mm focus of invasive, now in the middle of a 21 day tx of radiation.
Her worries about taking it are mostly about bone density issues, but also that she has been trying to lose weight for years, finds it quite difficult, and is afraid this treatment will make it all but impossible to maintain her current weight much less lose a little more...
Sorry this is very disjointed. This is kind of a vent by me for her. Hope y'all are having a good weekend
Comments
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Hi Mebechamp. I'm 62 and totally get where your mom is coming from. But please let her know that side effects are much less noticeable for women who have already gone through menopause plus they are usually temporary. (I had leg cramps for a bit, water retention for a bit, but nothing major.) Also since I have osteoporosis I am taking Tamoxifen instead of an AI; she should certainly talk to her doctor about that.
Hope that helps a bit. Even two years of daily pills makes a measurable difference in risk so I would really urge her to try them.
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The studies you are asking about don't exist.
A mastectomy is a localized treatment. Endocrine (anti-hormone) therapy is a systemic treatment. One does not replace the other. So there will be no studies that compare having a mastectomy to going on endocrine therapy. It's comparing apples to oranges. With the 5mm of invasive cancer, your mother would be prescribed endocrine therapy even if she'd had the mastectomy.
With invasive cancer, there is always a possibility that some cancer cells escaped the breast and moved into the body prior to the surgical removal of the cancer. The role of endocrine therapy is to track down any rogue cells that might be in the body and, hopefully, kill them off. In this way, endocrine therapy reduces the risk of a metastatic recurrence and increases survival rates.
Endocrine therapy does the same thing with any rogue cells that might be left in the breast after a lumpectomy, thereby reducing the risk of a localized (in the breast area) recurrence. Endocrine therapy also reduces the risk that the patient might develop a new primary breast cancer in either breast, i.e. a second breast cancer, unrelated to the first diagnosis. These are additional benefits of endocrine therapy for those who have a lumpectomy, however because the most significant benefit is the reduction in the risk of mets, endocrine therapy is virtually always recommended to patients who have ER+ invasive cancer, whether they've had a lumpectomy or a mastectomy.
That said, with a small invasive cancer, your mother's risk of mets is likely quite low. Endocrine therapy will reduce this risk by about one third. It is her decision as to whether this risk reduction is worth the risk of side effects.
Your mother's Oncologist should have provided her with an estimate of her risk of a metastatic recurrence. If he/she hasn't, your mother should ask for this information. Until that discussion, there are two on-line risk models available which you can use to estimate your mother's metastatic risk, and see the amount of risk reduction from either Tamoxifen or an Aromatase Inhibitor.
https://breast.predict.nhs.uk/tool
http://www.lifemath.net/cancer/breastcancer/therapy/
A couple of other comments. First, although your mother has a greater amount of DCIS than invasive cancer, the invasive cancer is the more serious condition, so other than surgically removing the DCIS, the DCIS can be ignored. Anything done to treat the invasive cancer will be more than sufficient to treat the DCIS.
Second, your mother has the choice between two very different types of endocrine therapy. Usually, an AI is given to post-menopausal women, but Tamoxifen, the treatment given to pre-menopausal women, is also available to those who are post-menopausal. Tamoxifen comes with it's own side effects (every drug has side effects) but it is actually good for the bones. Your mother's oncologist should take her through the pros and cons of each therapy.
Hope that helps.
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I'm going to repeat a little of what has already been said and add a little of my perspective.
Having a mastectomy instead of lumpectomy is what can often stop the docs from recommending radiation. Hormone therapy is usually recommended no matter which type of surgery she had.
I am 61 and have been diagnosed w/ osteoporosis although it isn't bad enough that I notice it at all.
I was also very concerned with the side effects. I have read oncologists saying that tamoxifen is often tolerated better than the aromatose inhibitor options I have also read studies that say that tamoxifen does NOT make bone loss worse (and I think I read that it actually used to be given as a treatment for osteoporosis, but not 100% sure). On the "down side", I have also read that the AI's might be very slightly more effective in preventing recurrence.
Because of my osteoporosis, my medical oncologist was fine with recommending tamoxifen for me. For me, I am more concerned w/ the osteoporosis than the chance of recurrence. I've been taking 10 mg of tamoxifen for 11 days now and took an extra 10 mg twice so far. I will take an extra pill again on Tuesday. My goal is to work up to an average 15 mg and then from there to 20 mg. So far I have had almost no side effects and definitely not any that affect my life.
Did she have an oncotype test run? Do you have results yet to show chance of recurrence with hormone therapy?
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