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Why Arimidex (Anastrozole) after bilateral mastectomy
My wife was diagnoed with Invasive Carcinoma in one breast. She elected for a bilateral mastectomy with a sentinel node biopsy. The lymph nodes were negative and her cancer was staged as T1aN0M0. The tumor was 3mm in size. Her cancer was both progesterone and estrogen receptor positive. Another blogger asked the question about the wisdom of taking an aromatase inhibitor with little or no breast tissue remaining. There are studies of mortality and cancer reoccurence after using these drugs, but her oncologist could site no specific results of women who had bilateral mastectomies. Do you know of such a study?
Additionally, there are many side affects of these aromatase inhibitors. After 3 weeks my wife has specifically noticed feeling achy in her joints, loss of apetite, she feels moody, and doesn't sleep well. These side effects surely are occuring to altered chemical processes in the body. Just the quality of life has been a significant impact not to mention how many years of life she loses by taking this medication. She is scared not to take the drug because of the presentation by the oncologist (who was very objective) which showed results of studies that are not specific to her elected surgery and pathology results. So my wife feels obligated to her family and herself to take the medication to prevent cancer from reoccuring which could cause her early and preventable death. Can we get better advice based on some information that specifically applies?
This discussion is related to Why would patient take arimidex after bilateral mastectomy?.
Additionally, there are many side affects of these aromatase inhibitors. After 3 weeks my wife has specifically noticed feeling achy in her joints, loss of apetite, she feels moody, and doesn't sleep well. These side effects surely are occuring to altered chemical processes in the body. Just the quality of life has been a significant impact not to mention how many years of life she loses by taking this medication. She is scared not to take the drug because of the presentation by the oncologist (who was very objective) which showed results of studies that are not specific to her elected surgery and pathology results. So my wife feels obligated to her family and herself to take the medication to prevent cancer from reoccuring which could cause her early and preventable death. Can we get better advice based on some information that specifically applies?
This discussion is related to Why would patient take arimidex after bilateral mastectomy?.
I'm on Aromasin which is another of the AI treatments. I've also taken tamoxifen and almost made it to the two year mark with that. The way my onco explained it to me was, taking two years of tamoxifen didn't just offer protection to me for the two years I took it but it also paid two years forward. I had almost every side effect on tamoxifen EXCEPT another cancer. The incidence of another cancer with tamoxifen is RARE while the benefits are well known.
The Aromasin does cause bone & joint pain, hot flashes and a few other lovely side effects (that was said with no small amount of sarcasm) but SO DOES MENOPAUSE. See I went off the tamoxifen and KNOW what side effects were still presenting themselves even after being off the drug for 3 months. Menopause causes a lot of these things. Tamoxifen and the AI treatments also cause menopause and the side effects of menopause. And if your wife was already menopausal, they still cause the side effects of menopause which may not make sense to you but it's true. It's a chemical menopause. I combat all of these lovely things with Ambien CR to sleep at night and Neurontin to help with hot flashes. And lets not just think hot flashes, lets think HAIR ON FIRE hot flashes! I also take Lexapro to combat the rest of the issues like mood swings which I never had before and anxiety caused by the cancer diagnosis. The side effects are unpleasant to say the least but are do-able for some and not others. I'd get a proactive doctor to help treat the side effects and stay on the meds as long as I could. Thats my plan and I'm on them too. I go as far as I can and then try another one. I do this for me. I don't want to dance with the cancer beast again.
You keep posting that she feels pressured to take these medicines. EVERYONE needs to NOT say ANYTHING to her about what she takes or doesn't take. Sorry hubby, but that includes you. She will find her way through this without help, honest. She alone will decide what she can tolerate or not. An early cancer treated by bilateral mastectomy doesn't mean the rodeo is over, though I certainly hope that it is for her sake. The body naturally produces estrogen even without ovaries by means of body fat and the adrenal glands. So if she takes a medication to block it and it naturally then blocks breast cancer the risk vs side effects may equal out for her peace of mind.
Last but not least I would NOT go back to a doctor who prescribes OXYCONTIN for the side effects of an AI. That makes no sense. The last thing she needs is a bad habit that's hard to get away from in my opinion. There are too many pain relief medications that don't have that kind of SERIOUS ADDICTION as a MAJOR SIDE EFFECT. I'd also find a female oncologist who understands what she's going through and helps her accordingly. Quality of life... yep... side effects of meds vs cancer.... We all struggle with that decision on a daily basis.
Best wishes to your wife and to you who must be quietly supportive of whatever she chooses :)
The Aromasin does cause bone & joint pain, hot flashes and a few other lovely side effects (that was said with no small amount of sarcasm) but SO DOES MENOPAUSE. See I went off the tamoxifen and KNOW what side effects were still presenting themselves even after being off the drug for 3 months. Menopause causes a lot of these things. Tamoxifen and the AI treatments also cause menopause and the side effects of menopause. And if your wife was already menopausal, they still cause the side effects of menopause which may not make sense to you but it's true. It's a chemical menopause. I combat all of these lovely things with Ambien CR to sleep at night and Neurontin to help with hot flashes. And lets not just think hot flashes, lets think HAIR ON FIRE hot flashes! I also take Lexapro to combat the rest of the issues like mood swings which I never had before and anxiety caused by the cancer diagnosis. The side effects are unpleasant to say the least but are do-able for some and not others. I'd get a proactive doctor to help treat the side effects and stay on the meds as long as I could. Thats my plan and I'm on them too. I go as far as I can and then try another one. I do this for me. I don't want to dance with the cancer beast again.
You keep posting that she feels pressured to take these medicines. EVERYONE needs to NOT say ANYTHING to her about what she takes or doesn't take. Sorry hubby, but that includes you. She will find her way through this without help, honest. She alone will decide what she can tolerate or not. An early cancer treated by bilateral mastectomy doesn't mean the rodeo is over, though I certainly hope that it is for her sake. The body naturally produces estrogen even without ovaries by means of body fat and the adrenal glands. So if she takes a medication to block it and it naturally then blocks breast cancer the risk vs side effects may equal out for her peace of mind.
Last but not least I would NOT go back to a doctor who prescribes OXYCONTIN for the side effects of an AI. That makes no sense. The last thing she needs is a bad habit that's hard to get away from in my opinion. There are too many pain relief medications that don't have that kind of SERIOUS ADDICTION as a MAJOR SIDE EFFECT. I'd also find a female oncologist who understands what she's going through and helps her accordingly. Quality of life... yep... side effects of meds vs cancer.... We all struggle with that decision on a daily basis.
Best wishes to your wife and to you who must be quietly supportive of whatever she chooses :)
As with bb, I am not a doctor.
I think it is amazingly terribel for the doctor to deal with your wife's side effects by wanting her to add oxicontin to the mix.
I am really terribly baffled as oxicontin is incredibly addicting and not a beginning narcotic to give. Once dependent on oxicontin, the 'choices' really begin to fade!
Also, as you and bb say about not even trying the Femara first without medicating potential side effects.
I tried all of the estrogen anagonists, and when my oncologist switched me from Tamoxifen to the first Aromatase Inhibitor, Arimidex, I lasted about three days and knew with absolute certainty that I would never take it again.
Then I tried Femara and on that one I lasted for a few weeks before I quit, and then Aromasin and that was about one day. (All of the above except for the Tamoxifen are Aromatase Inhibitors)
But of all the things you have said, the oxicontin addition is the worse, I think, and really irrisposible to hand out at this time and for this reaon.
KAT
I think it is amazingly terribel for the doctor to deal with your wife's side effects by wanting her to add oxicontin to the mix.
I am really terribly baffled as oxicontin is incredibly addicting and not a beginning narcotic to give. Once dependent on oxicontin, the 'choices' really begin to fade!
Also, as you and bb say about not even trying the Femara first without medicating potential side effects.
I tried all of the estrogen anagonists, and when my oncologist switched me from Tamoxifen to the first Aromatase Inhibitor, Arimidex, I lasted about three days and knew with absolute certainty that I would never take it again.
Then I tried Femara and on that one I lasted for a few weeks before I quit, and then Aromasin and that was about one day. (All of the above except for the Tamoxifen are Aromatase Inhibitors)
But of all the things you have said, the oxicontin addition is the worse, I think, and really irrisposible to hand out at this time and for this reaon.
KAT
Hi again,
First a caution/disclaimer: I am not a doctor, so please don't use any information or opinions I offer to try to convice your wife's oncologist to alter his plan! (They really hate it when someone over the Internet thinks s/he knows better than the treating physicians what is best for their patients, and I don't blame them a bit!)
That said, speaking just as another lay person like yourself, I agree that it would seem to make more sense to try continuing Arimidex with the Oxcontin, to give it a fair trial, and then if it is still intolerable, to try Femara, first without, and then if necessary with Oxycontin, so your wife would have a real head-to-head comparison in regard to which might be better over the long haul.
As far as the choice between the two in terms of effectiveness, they are both good (and superior to Aromasin in preventing recurrences other than bone mets). Femara is also reported to have less effect on cognitive functioning than tamoxifen, for example, and I don't know if that holds true for Arimidex as well. Tamoxifen is the one with some risk for uterine cancer. I don't recall seeing that caution for the AI's but I could be wrong. (Check out the entire prescribing info for the drugs if you haven't already--it also lists the frequecy of the various side effects during the trials to obtain appoval, and often for the after-marketing experience as well.)The concern with the AIs is more with bone problems--osteoporosis, or worse case scenario, fractures, but that rish can be at least partially offset with adequate Calcium, Vit D, and bone protective meds. if necessary.
By the way, has your wife had her Vit D level checked? Low levels are a risk factor for BC, and for recurrence of BC. Some oncologists check this regularly and have their pts work to maintain a level far above the insufficiency or deficiency levels.
Another suggestion I'd like to make is that you try not to look at this as an all-or-nothing proposition. You seem to be viewing it as "losing the next 5 years of her life," but possibly after she's on it a while the side effects could diminish, or if she can only tolerate it for a few yers, that would be better than not taking it at all.
Best wishes...
First a caution/disclaimer: I am not a doctor, so please don't use any information or opinions I offer to try to convice your wife's oncologist to alter his plan! (They really hate it when someone over the Internet thinks s/he knows better than the treating physicians what is best for their patients, and I don't blame them a bit!)
That said, speaking just as another lay person like yourself, I agree that it would seem to make more sense to try continuing Arimidex with the Oxcontin, to give it a fair trial, and then if it is still intolerable, to try Femara, first without, and then if necessary with Oxycontin, so your wife would have a real head-to-head comparison in regard to which might be better over the long haul.
As far as the choice between the two in terms of effectiveness, they are both good (and superior to Aromasin in preventing recurrences other than bone mets). Femara is also reported to have less effect on cognitive functioning than tamoxifen, for example, and I don't know if that holds true for Arimidex as well. Tamoxifen is the one with some risk for uterine cancer. I don't recall seeing that caution for the AI's but I could be wrong. (Check out the entire prescribing info for the drugs if you haven't already--it also lists the frequecy of the various side effects during the trials to obtain appoval, and often for the after-marketing experience as well.)The concern with the AIs is more with bone problems--osteoporosis, or worse case scenario, fractures, but that rish can be at least partially offset with adequate Calcium, Vit D, and bone protective meds. if necessary.
By the way, has your wife had her Vit D level checked? Low levels are a risk factor for BC, and for recurrence of BC. Some oncologists check this regularly and have their pts work to maintain a level far above the insufficiency or deficiency levels.
Another suggestion I'd like to make is that you try not to look at this as an all-or-nothing proposition. You seem to be viewing it as "losing the next 5 years of her life," but possibly after she's on it a while the side effects could diminish, or if she can only tolerate it for a few yers, that would be better than not taking it at all.
Best wishes...
My wife went to the oncologist today and because she was complaining of the side effects, the oncologist changed the AI to Famara and coupled it with Oxycontin to offset the side effects. Makes no sense to me to do this, since the Oxycontin is just going to hide the side effects and that could have been done with the Arimidex which is more effective. Should my wife just call the doctor and tell him that she wants to continue with the Arimidex with the Oxycontin? We want to be involved in the treatment at a responsible level, but the doctor isn't making sense with this treatment based on the complaints that my wife is presenting.
Here is our other concern. These AI medications all have pretty serious possible side effects to include causing cancer themselves. We get all the percentages for how the Arimidex diminishes mortality and recurrence rates, but we don't get the percentages of side effect occurences. Is that information available?
My wife is having a hard time deciding whether to stay on this medication and feels almost pressured to take the medication. Trying to stay positive, but it is becoming tough.
Vince Rost
Here is our other concern. These AI medications all have pretty serious possible side effects to include causing cancer themselves. We get all the percentages for how the Arimidex diminishes mortality and recurrence rates, but we don't get the percentages of side effect occurences. Is that information available?
My wife is having a hard time deciding whether to stay on this medication and feels almost pressured to take the medication. Trying to stay positive, but it is becoming tough.
Vince Rost
Hi and welcome to our community.
I certainly understand your questioning the need for this tx, since your wife's cancer was caught at an early stage, and she underwent bilateral mastectomy. However, the tx is directed at preventing recurrence other than just in breast tissue.
The Amer. Soc. of Clin. Oncologists recently updated its guidelines, one of which I summarize below:
"To lengthen disease-free survival and lower risk for recurrence (i.e., locoregional or distant recurrence or contralateral breast cancer), postmenopausal women with hormone receptor–positive breast cancer should consider an AI, either as primary adjuvant therapy for 5 years or sequentially after 2 to 3 years of tamoxifen to yield a total of 5 years of adjuvant endocrine therapy. Women who discontinue initial AI therapy before 5 years should consider using tamoxifen to bring the total duration of adjuvant therapy to 5 years."
It is of course her decision re whether lowering the risk in her case is worth enduring the side effects. If she does choose to take an AI and the side effects of Arimidex are intolerable, she could see if she would do better on a different one. However, in at least one recent study, Arimidex came out ahead of the others in preventing recurrence.
Best wishes to both you and your wife...
I certainly understand your questioning the need for this tx, since your wife's cancer was caught at an early stage, and she underwent bilateral mastectomy. However, the tx is directed at preventing recurrence other than just in breast tissue.
The Amer. Soc. of Clin. Oncologists recently updated its guidelines, one of which I summarize below:
"To lengthen disease-free survival and lower risk for recurrence (i.e., locoregional or distant recurrence or contralateral breast cancer), postmenopausal women with hormone receptor–positive breast cancer should consider an AI, either as primary adjuvant therapy for 5 years or sequentially after 2 to 3 years of tamoxifen to yield a total of 5 years of adjuvant endocrine therapy. Women who discontinue initial AI therapy before 5 years should consider using tamoxifen to bring the total duration of adjuvant therapy to 5 years."
It is of course her decision re whether lowering the risk in her case is worth enduring the side effects. If she does choose to take an AI and the side effects of Arimidex are intolerable, she could see if she would do better on a different one. However, in at least one recent study, Arimidex came out ahead of the others in preventing recurrence.
Best wishes to both you and your wife...
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