I'm having conflict with my mother on the topic of radiation.
I'm really sorry if I do anythng wrong or offend anyone here or if this is trivial, but I could really use some advice, which I must admit is a difficult and unusual situation for me to find myself in. My mother had a lumpectomy and two re-excisions this summer followed by a course of radiation. By all accounts, it was a best-case scenario. Now, she has been prescribed a pill per day for five years; I don't think it's Tamoxifen, but another one in that category. An estrogen-blocker, I think? Either that or an estrogen producer, definitely hormone related. She has been taking it for about two weeks and is beginning to suffer the predicted side effects, mainly hot flashes and irritiability, from what I can see. We had a major conflict last night when she told me that she was so sick of it that she wasn't going to take her pill that night. My reaction was out of line and upset her much more, with screaming and crying, which is not like her at all because she is one tough woman, which I knew long before any of this happened. The most disturbing part was that she is unwilling to go back to her oncologist, whom we got agree is fantastic, to discuss additional medications to mitigate the side effects and/or changes in dosage and/or new medications altogether. So I have I think a legitimate fear that she is going to stop taking her medication. Is this a big deal? Is this normal? Am I making a mountain out of a molehill? Should I call her doctor to advise her what is going on?
Thank you so much. I don't really have any other family I can talk about this with so if there is a good community of smart sensitive people out there I would just be incredibly grateful for it. I am her 34 year old son, if that matters.
Comments
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it sounds like the issue isn't radiation- she's done with that- hormone therapy is different. she's probably on an aromatase inhibitor (AI) . mood changes are a common side effect. You are welcome here, the women (and men) on this board are a wealth of information. You sound like a caring son who wants the best for your mom.
I started on Tamoxifen a couple months ago since I'm pre-menopausal (post menopausal women are generally given an AI) . I have certainly noticed some mood changes- tamox and AI's work in different ways but both mess with hormones. I have been on an anitdepressant for years- well before being diagnosed with breast cancer, I had to switch to a different one that worked with tamoxifen.
I have always hated the idea that I had to take a pill to feel decent emotionally- the Tamoxifen /AI mood changes are different for everyone- some women get better after a couple months- some do better adding a antidepressant along with the AI- it sounds like that is what you think might be called for and your mom doesn't want to do that. that is a common way to feel- I don't want to take a pill to deal with the side efffects from another pill- where does it end?
Many women go off tamox and AI's for these reasons and many more. If it comes down to quality of life- there are natural supplments out there to help our bodies achieve a natural good estrogen/bad estrogen balance- check out threads on iodine and IC3/DIM. who know more about. I hope some women who know more about AI's will chime in.
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mart1us:
It sounds like Raloxifene (EVISTA) which is in the class of SERM's selective estrogen receptor modulators. Fewer side effects than Tamoxifene for preventative (if she has LCIS or ADH) like I do. I also had two biopsies--mamotome showed the ADH and the "partial mastectomy" biopsy named so for 1 cm margin on each side--but LCIS is not cancer--but a marker for cancer. My oncologist believes my "condition" is estrogen driven and Raloxifene will cut my risk in half and have the side benefit of improving my bone density and lowering cholesterol which has been creeping since Menopause at 49-I'm 53 now. The first week I took the Raloxifene I panicked with the side effects--felt like my first year of menopause all over again, complete with BGI MOOD swings, tears, unable to cope and crazy dreams. So, I thought I would try "easing in" which meant "reducing the estrogen effect" gradually as not to "over react" and it seems to have worked. After two weeks of "half a pill"...I upped the dose to half on day one, whole on day two, half, whole etc..Now I have been on a whole pill daily (60mg) with little effect--so far.
Also, I'm starting weight watchers because my breast surgeon thinks for me, reducing tummy fat (drop 40 lbs) would reduce breast tissue produced estrogen--similarly at about the same rate as the Raloxifene. With enough will power, i plan to do both-as long as the nasty side effects don' come back.
Just hug your mom--for me, the emotional "roller coaster" is hard to take, especially since before menopause, I was not an emotional or irrational person. Relationships suffer--just when you need them the most!
PS, if your mom had "cancer" not LCIS--the drug is more likely an aromatase inhibitor. Aromatase is an enzyme that converts estrogen "precursors" to estrone or estradiol? (both rough at the root of breast cancer) If you can block aromatase, you can prevent the production of more 'local" estrogen.
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I commend you for reaching out for help for you and your mother. it is clear you lover her very much.
I started Tamoxifen back in October, after surgery,chemo and radiation. And I have to say that it was the most frightening part of the entire thing (well, except for the diagnosis). I felt like the treatments all did things TO me, but the pills could actually CHANGE who I am. I went to see the cancer psychologist at our center a few times because I was so afraid of the mood swings and emotional changes the pills could cause - AND because it is a FIVE YEAR course of treatment. I remember saying in all seriousness to the counselor "I would rather die of cancer than turn into a completely different person."
Now for me, so far, I haven't noticed anything mood related. Just hot flashes and some other stuff you don't need to read about. But I did learn that there are things you can do to help with the changes the pills can bring = accupuncture is known to help, also I take DIM to help with the estrogen modulation (not sure if that is the right term). Relaxation/meditation can also be helpful. Anti depressants are helpful as well, but I didnt' want to go that route unless absolutely necessary.I share all this to let you know how upsetting and frightening it can be to not feel in control of your emotions, ESPECIALLY if she has always been a 'strong tough woman' as you describe.
My suggestion would be to revisit the issue when everyone is calm. Maybe do a little research so you can know how much the medication improves her odds, and then tell her how much you love her and want her to be around for a long long time. I would offer her the info about this message board - she may be interested in joining and getting support. Also offer to go to the onc WITH her to discuss options. I don[t think the onc's office will speak to you alone due to HIPPA regs, but i may be wrong. I am hoping your calm and loving plea might sway her to rethink.
Also, if she does stop taking it, she may be willing to revisit it later on once the side effects fade and she feels more like herself. of course this is not optimum, but it isn't all or nothing - even if she does quit, she can always try another one. Don't give up hope. I wish you the best.
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I wonder if your mother's issue is in part the side effects of the drugs as you suggest and in another part just being fed up with one more thing to have to do. It really is quite bizarre that we have to go through all the treatment for a problem that many of us could neither feel nor see before diagnosis.
When I started Femara (a drug for similar purposes, specifically for post menopausal women) the side effects are not that dramatic. What does make an impact is starting every morning by taking that (fill in your own adjective) pill along with the calcium and Vitamin D to make sure my bones don't fall apart - it's a daily, in your face reminder of what has been and what might be. There are days when I'd like to toss the things too - but don't. Among other things, I want to see my new granddaughter grow up and I know this will help make that happen.
When this explosion has blown over as such things usually do, a calm discussion with your mother about wanting to make sure she sees whatever good things are her future might help her decide either to continue with the drug she has or seek an alternative with her oncologist. She's fortunate to have such a caring son.
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The degree of risk she is taking in discontinuing whatever ajuvant therapy she is taking depends on what stage and grade her cancer is. For example, I had grade 3 DCIS with lumpectomy and rads. I discovered after taking the tamoxifen for a couple of years that I had liver damage from a previously undiagnosed case of Hepatitis B, and talked to my oncologist. She told me how much of a percentage it increased my odds by, which in my case was only something like 3%. So you can pretty much take a calculated risk - the oncologist agreed with me that 3% is not a lot and the effect on my liver was more serious. Maybe your mom could make an appointment with the oncologist for a consultation - the oncologist isn't going to force anything down her throat.
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