I'm not going to take the estrogen inhibitors
Hi -Just DX April 1 2013 with stage 0-1 had lumpectomy April 25th 2013. Will be starting radiation next week 1 week 2 times a day. My Medical team told me I need to take an estrogen inhibitor for 5 years. My labs were estrogen+ Progesterone + and HER-
I had 2 sentinal lymph nodes removed have not heard yet about the involvment there, will have an after surgery consult May 8 to discuss results. I have been told by my team they would be surprised if lymph nodes were affected as my cancer was so small only way it was pickeds up was by a 3 D mammogram done routinely at the Yale Breast Center in New Haven CT.
Let me tell you all I have a very high pressure job I just turned 60 in Feb. and I need to keep working for 5 more years till I can retire. I WILL NOT deal with memory loss,more chronic pain,headaches ect. I have had ADD since I was a child and have been on ADD meds for 17 years. I perform my job expertly but can't afford to F-up if you know what I mean !! I have had bouts with severe depression for years after menopause 17 years ago and take prozac. I can't REALLY exercise due to the fact I sit at a desk for 8 hours a day. So weight gain from those meds is not an option I'm 25 lbs overweight now as it is - so my medical team can prescribe it -I'm NOT TAKING IT.I will of course be vigilent with mammograms etc. BUT I'm not risking my job-going in feeling like crap ,tired from no sleep ect -I'm the one who carries the HEALTH INSURANCE,my spouse is self employed. I really don't think it will come back and if it does I will have both off asap. I probably should have this time but my dr advised I did not have to it was so small. Sooo what do you all think ??? FYI I have not had a sound sleep in 17 years since menopause and take Ambien every nite I love it !!!!
Comments
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The results of your final pathology on your tumor and your nodes will determine your stage and the recommended treatment from your doctors.
That may not ever change your mind regarding taking an AI, but it could change the course of other treatment.
Sorry that you are going through this and for your other health challenges. -
Well, you won't be the first person on this board to make that decision. However, you might want to listen to your doc first, to see what your odds of a recurrence are. It sounds like, since you are having condensed radiation treatments, that your tumor was of a low grade.
Other factors that you might want to discuss are the size of the tumor, how large the margins were, and the KI67 rate that the tumor cells are growing at.
All these items will affect it's likelihood of coming back.You might also want to consider this approach - you can try either an AI or tamoxifen, and see if you actually fall into the category of women who tolerate these medications quite well, thank you. Remember, the women who come here to talk about these meds are the women who are having problems. Many do not.
I can understand the need to control this part of your treatment. But, be sure to take all factors into account. -
thanks for not being the gloom and doom person. yes I need more inforegarding margins size etc from dr on Wednesday. but enlighten me what is AL ???
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Its AI which is aromatase inhibitors, the group of hormone suppressing drugs post menopause
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The previous poster was refferring to AIs (aromatase inhibitors). I believe it is an another drug but only prescribed for post menopausal women. Tamoxifen is the only antiestrogenic option if you are pre menopausal.
A wise woman told me just a few days ago, we all respond to threat differently. Some people crawl in bed and pull a blanket over their heads, some put up their dukes and ready themselves for a fight and some might even stare this threat head on, square up and accept it for what it is in their lives and invite it in their front door.
I know for me I instantly pulled on the boxing gloves. Not because I felt my life was threatened or in danger. The lifetime survival rate for DCIS is 98-99%. But moreso because my livelihood and way of life was threatened by the potential for bad SEs of Tamoxifen. I too have a demanding job,in fact extremely physically demanding.
What you are describing is a very rational fear in your immediate world. But I suggest you look back and read your own words. You are describing an unknown outcome, but one that might hinder life as your know it. Or it might not.
4 weeks ago, I was dead set against it for my case (2mm intermediate, clear margins, ER/PR +). But I have accepted this as part of what is necessary for my long term health. It is the best known and proven remedy to decrease our chance of a recurrence as well as a new breast cancer in either breast. And if in fact SEs become too intolerable, then I will stop. Or I will take a break from it, or I will try half a dose, or I might take it only a few months at a time. Some benefit is better than no benefit. And I will never know how I do on the drug if I don't at least try it for a few months.
In honor or Cinco de Mayo....Paso con paso....step by step
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MBB it is difficult to accept that we have Breast Cancer, it has been for virtually all of us. Questioning your treatment options is also very common. Be gentle with yourself.
Hugs Ginger
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Just so you have another option. I have almost no se from taking femera. I too have ADD and take Ritalin. I also take Ambien. Love my ambien, I sleep so well. I have to be alert during the day or my two year old would burn down the house. So don't be afraid of the estrogen blockers.
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and exercise is not optional. find time for it. lose the 25 lbs.
i dont have any SE from tamox. barely have hot flashes.
do everything you can so this beast doesnt come back -
I think you should discuss this well with your oncologist.
Further, you need to find time for exercise. Most people have 8 hours at a desk a day, but many still find a way to exercise. Exercise is probably the #1 defense against BC recurrence.
You can adjust your diet to lose that 25 pounds. It is not easy, but it will also be helpful in lowering your circulating estrogen. Myfitnesspal.com is very helpful and easy to use.
I have not had either weight gain or horrible SEs from the estrogen blocker (femara/letrozole in my case), so don't assume that it will be horrendous. My suggestion would be to try it, at the very least. You can always quit if the SEs seem too severe.
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I have had very little issues taking Tamoxifen and I have been taking it for nearly two years. The side effects were minor (vaginal discharge, some light-headedness), but went away after my body adjusted to the dosage. I have lost nearly 18lbs since treatment and have not gained it back. I've not have issues with memory or joint pain; just this week I have walked eight miles and cycled twenty miles. It has not interfered with my career or my lifestyle. The only time I ran into a problem was when I had forgotten that I'd taken my pill and then took another one. Yow. Stomach discomfort. But it went away after 24 hours and I knew that I was the one the caused it.
In the end, it's your decision, but hormone-blockers don't always cause debilitating side effects. Every woman is different and will repond differently. Like Momine, I would suggest a "trial run" to see how you feel. Could be you'll be one of the many women who do not struggle with horrible side effects. And, if you do, you can always stop.
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I just started my pill today, so I can't comment on the potential side effects (which I admit are pretty scary reading about it). However, one of your comments caught my attention....that if it does recur you'll have them lopped off asap. For me, the scary part is not only having a chance for a local recurrence but a distant one. Just based on that, to give my body that extra fighting chance against any cells trying to make a party elsewhere, I'm heading down tamoxifen lane, with hopes that I can tackle the SEs as best as I can.
I echo the other suggestions that possibly you could give it a trial run? -
Thanks to EVERYONE-yuou all are giving me the courage to at least try them for a while ...hope I'm one of those with little side effects !!!!
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Good for you mbb - it's worth a try to see how you do. I'm finishing up my 5 years of femara in July, and while it hasn't been a piece of cake, it's been doable.
And as everyone else has said, exercise is NOT an option. Exercise will also help minimize any side effects and will help with sleep issues. Exercise has also been shown in study after study to greatly reduce your risk of recurrence. Start small - decide that today you will devote 10 minutes to yourself and take a walk. Right now. You're certainly worth 10 minutes a day, aren't you?
Better yet - invest in an inexpensive pedometer. See how many steps you walk in a normal day. Then try adding steps gradually. Park in the farthest parking spot instead of one next to the door. Take the steps instead of the elevator. Walk down the hall to see a colleague instead of picking up the phone. It's amazing how easy it is to fit in a few extra steps a day. If you want some encouragement, hop over to the "Let's Post Our Daily Exercise" thread in the Fitness section. It's a group of women at all stages of treatment and all levels of fitness. We all do different exercises - one woman is a walker who was in the same spot as you. One day a few years ago she popped on a pedometer, and has now logged almost 3500 miles! Some people on the thread run, some take fitness classes, some do yoga, some workout at home to exercise DVDs, some bike. Some women who are still in active treatment can only manage a walk to the corner and back - a victory for them! We're all into different things, but what we have in common is a determination to exercise. We encourage each other when we need encouragement, and even administer a gentle kick in the pants now and then when that's needed. Many of us have high stress jobs, many of us are on AIs or Tamox, some have other medical issues as well - we get it - it's not easy. But it really helps to be part of a group who understand the special stresses b/c treatment causes - and every single member of that group will be cheering you on.
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With A.I. you are ok with prozac as well, but I believe it interfers with tamoxifen efficiency so you'd likely have to switch to lexapro, citalopram, effexor...so remember there are some different A.I.'s out there so that if one doesn't work well with you, another may. The anti-depressant will take care of the hot flashes if you get them. A.I. and tamoxifen don't necessarily cause weight gain either.....and probably the prozac would inhibit that too as I THINK it is weight neutral....some anti-depressants are not. Because you have had breast cancer once, you are more prone to it again and the hormonal treatments cut recurrance (in ipsilateral and contralateral breast) by half. I didn't take my tamxifen first go....small, low grade tumor (mastectomy) and 2 years later got cancer in contralateral breast (mastectomy)....I take it NOW. You read about all the negative side effects because they have to be stated legally, but it doesn't mean you'll get all or any of them...some people even feel better on tamoxifen!
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I also don't want to scare you but the British Journal of Medicine has stated that sleeping pills of the "Z" category can increase your chances of getting cancer by 35%. There's some kicking and screaming going on by the makers of Ambien etc. but it is good to be aware of this. I read your stress. Could you perhaps go into work an hour earlier and park a mile and walk there for exercise (which GREATLY helps stress)...or maybe tai chi classes.....after learning the basic moves, even a ten minute session at lunch is beneficial. STRESS kills, probably more than cancer does. I just lost a good friend at 54 years old because he had a "stressful personality" (didn't smoke, thin, didn't drink but maybe a beer a day) and had a fatal HUGE heart attack at work. Maybe re-evaluate what is going on....maybe cancer is telling you something!!!
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mmb19 - Arimidex is not what causes memory loss, chemotherapy does, and it doesn't sound as if you will be having chemo. I had chemo and can vouch that chemo can mess with your brain, that's why memory problems are called "chemo brain". Again, it does not come from Arimidex.
Everything I have read and been told by medical professionals at two major hospitals has been that those who exercise have a 40% better chance of BC not recurring, so for your own sake, please seriously look into starting.
I was not a fan of exercise, but that 40% number got me to buy a pedometer on Amazon which showed me how little I was walking everyday - 10,000 steps should be our goal and I was not even hitting 4,000 - and got me to reluctantly walk into a gym. Now I go 3 - 4 times a week. I had no idea what to do there so I started walking slowly on a treadmill. It had a TV and with earphones so I could walk and catch up on the news or some program I liked. I was pretty weak still from chemo, but I have gotten stronger as time has passed and now I enjoy using the elliptical and the rowing machine as well as walking briskly on the treadmill. I spend about 30 - 40 minutes doing a mixture of whatever makes me happy on that day. So long as I break into a sweat at some point, I know I am doing well.
Look for ways to burn a few calories as you move through your day, walk to work if you can - my daughter does everyday in NYC because her high stress job often keeps her in the office late. Take the stairs when you can, walk to where ever you go to get lunch - and make better choices about what you order, simple things do add up.
As for weight gain, Arimidex had not caused me to gain weight at all. I gained about 5 pounds during chemo because I was too sick to move much - being a couch potato was comforting, but, since I have been on Arimidex for five months I have actually lost weight. Some is due to starting to exercise, a lot is due to watching what I eat. I eat far more fruit and vegetables than breads crackers and cookies which I used to live on as my major food group
, and I have cut way back on meat on my doctor's advice. Both hospitals I go to advise against eating read meats - beef, lamb and pork.I make a point of skipping sweet things, not because of fears of weight gain, but because I read a long scholarly cover story article in the Sunday New York Times Magazine a year or so ago that talked about how sugar causes inflammation in our bodies that can encourage cancer growth among other terrible things - that our overuse of sugar is basically poisoning us and causing many diseases.
Make a plan to rid yourself of excess weight slowly as it's not healthy for you for a lot of reasons. My Oncologist lost a ton through Weight Watchers this past year as had several ladies I met at a recent Breast Cancer symposium. That might be a route for you to explore.
Good luck!
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Way to go Hortense!!!!
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I'm having a month's break just so i can feel normal again.
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I tried Tamoxifen a year ago. I had terrible side effects. However, I realized that I was in a very bad place emotionally and T became the scapegoat. The fact that I was not doing everything I could to prevent recurrence ate at me every day for a year. Finally I decided to try it again, but not go off the 40mg Prozac until I knew I could tolerate the T. This time I had very few side effects, and emotionally I am delighted to be on it. My onco was delighted too! She had me drop the Prozac for 4 days, then switch over to 37.5mg Effexor. One of the SE of Effexor is drowsiness, so I take it near bedtime and it knocks me out.
I echo the above sentiments that it can't hurt to give it a try. -
Mbb19,
I know it is a tough decision but I wanted to respond to a few of the statements you mentioned. First of all is the stressful job. Is there any way to reduce the stress at work? Stress plays a big role in cancer and its treatment. Reducing your stress can do wonders for your health Also the weight gain. I would work on exercising and losing the 25 lbs. Weight is one of the big factors in recurrence. It is also noted that exercise is key to fight this thing. I exercised throughout my treatment and still do. I also completely changed my eating habits. I eat more healthy, threw away my teflon and plastic containers, cups, silverware, etc. I also got rid of shampoos, soap, deodorant that wasn't paraben free.
First and foremost is you. You need to be the most important thing right now. Not the job, not the husband, you. You also need to do the research on your diagnosis. I can tell you that the research I have done showed no difference in a mastectomy vs lumpectomy as far as survival rates so I chose the latter. I also chose to have a complete hysterectomy to avoid the tamoxifen and also because my mother had ovarian cancer. I also found no research to tell me that taking the AIs would be any benefit to me. There are plenty of studies showing tamoxifen and AIs but not AIs alone.
Ask your doctor about the meds you already take and make sure any others won't interfere with them.
I hear ya about the lack of sleep. My hot flashes and lack of sleep has just started! I am on 150mg of effexor but still wake up. I am not looking forward to that for another 10+ yrs!
Good luck and keep us updated.
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My oncologist told me exercise, keeping weight down, and not binge drinking were the three best things I could do to lower my risk. I hate exercise, won't lie. I lift weights 3x a week, and I do Pilates videos on my Kindle, which has really helped take the hassle out. I should probably get on a treadmill, too, but I walk a lot.
There are some important points of clarification for future readers. The point of these drugs is to reduce local AND distant recurrences. It's not as simple as just having your breasts removed if it comes back metastatic. This whole game is to keep from dying from the disease. I don't know the profile of the original poster, but I think it's important not to give people the wrong impression about how the treatments work.
Arimidex can cause mental acuity issues. Hormones play a role in this. It's not just chemo.
You could also try Tamoxifen. Many women who can't tolerate AIs will go that route, and the wonderful news is, it looks like we can use it for 10 years. I will never be able to be on an AI due to my fragile bones, precipitated by cancer and my family history.
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You go girl! I had a lumpectomy 2 yrs ago, stage 1, DCIS, slightly invasive. I've reluctantly been taking Tamoxifen for two years. Recently, I've noticed that my eyes are getting worse (starting to get cataracts, gray film). I haven't had any other bad side effects from the Tamoxifen, but I worry about getting a uterine cancer or blood clots. My doctor wants me to take the arimidex. After what I've read, there is no way I'm going to put that in my body. I'm already arthritic and can't imagine more pain, plus bone loss. I pretty much feel like you do. I work hard too and rarely sit still. I'm thinking I got this bc in the first place because of taking a low dose birth control pill for 3 yrs to control heavy menstrual cycles at age 48-50. I'm 52 now and feel good. Part of me feels like we live in a pill pushing society. What aggravates me most is that whenever a natural approach is brought up, doctors don't want to hear it. I want to feel good, and I believe we all should have our own choices.
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mbb...boy can I relate to the way you are feeling about taking Tamoxifen or Arimidex or whichever drug the drs may prescribe. I started out with Arimidex but because of osteoporsis my ONC switched me to Tamoxifen. Arimidex attacks the bones and obviously I didnt need to be taking that. I had no SEs from it at all. Tamoxifen is another story. I am one of those who have difficulty concentrating, weight gain, sleep deprivation, hot flashes, etc...my BS told me to talk to my ONC when I see her - this Friday by the way - because there are meds they can give me that will help alleviate some of these SEs. Just what I need another med but still at least there is hope of some relief. My sister in law just passed the 5 year mark and says she feels so much better...she took Tamoxifen. Her hot flashes and weight gain was brutal. You may be one of the lucky ones who dont have bad SEs...hope you are; I am taking the drug because I am afraid to play Russian Roulette with my life. BTW I have Stage 1, Grade 1 - lumpectomy followed by 33 RADS treatments. My Oncotype score was 11 with an 8% chance of recurrence with taking Tamoxifen...Good luck whatever you decide. diane
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You might also consider an intermittant fasting diet (Fast Diet is the book I have). It is scientifically sound and is very good for the brain, heart, preventing cancer, diabetes...just do a search on it. I take Monday and Wednesday as my fasting days (500 calories a day...you can also take three days if you want). Today, I had instant oatmeal for breakfast, half an apple mid day, a yougurt for lunch and dinner was a half cup of fat free cottage cheese, the other half of apple, 100 g of carrots, 100 g of cauliflower, 1 Tbsp of dressing and will have a fat free yogurt this evening (Source). I am drinking tea and coffee, one diet soda (or club soda). The rest of the week, you can eat normally and have what you want. You lose weight. Just make sure everything on those two days adds to 500 calories. The body goes into "repair" mode and starts using fat calories (rather than muscles ones) plus add a 20 minute to half hour walk per day. You will feel so much better because your mind clears up and you start feeling positive in your life....plus it helps you fight off diseases like heart attacks and cancer.
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Remember too, the side effects can also be indications that the drug is working and makes your prognosis BETTER than if you don't get SE.....especially the hot flashes.
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Sde:
Interesting how we all make different choices. I chose double mastectomy PARTLY because I did NOT want to have radiation which would be required if I had the lumpectomy...;)
Thrilled I did cuz BMX found IDC in the OTHER breast. -
Hi all,
Trying to work up courage to start my tamoxifen tomorrow. The SE really scare me. I hear good stories and bad. But like keep hearing on here is to try it and can always stop if too bad. Wishing all good thoughts!
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I'll chime in with my story. I'm in the "put up your dukes" camp when it comes to facing BC. I have been taking Arimidex since May 2005, and have ZERO side effects (that I am aware of). My cancer was not small, but was only found on digital mammogram. My breast surgeon could not even find it -- had to have sterotactic biopsy to locate it. Chemo & removal of 26 lymph nodes (after 4/5 sentinel nodes positive) kicked my butt, but other treatments did not. I don't even notice the Arimidex, except I remember it's my "keep the cancer away" bullet. My MO feels that I should stay on it as long as I don't have any side effects (bone density actually improved), unless new studies indicate a stopping point.
I lost about 10 lb. during chemo, but quickly gained it back when my appetitite & taste buds came back (and nausea went away). Since that time, I have on purpose lost about 12 lbs. (I'm short, so that's a good amount, but still need to lose another 12-15). Mainly, I cut back on carbs -- I'm also borderline diabetic, so helps that, too. I was exercising a lot more before I ruptured 3 disks in my back last summer, not at all cancer-related but heavy lifting & wrenching-related. My back is now better (no surgery, just exercise & inversion trainer plus muscle relaxants) so I will be exercising more. I too, work long, often stressful days.
To me, it's important to do everything possible to prevent the recurrence of cancer. As you can see in my particulars below, I'm pretty high risk for recurrence. But now, it's been NINE years since my diagnosis, all with NED -- no evidence of disease! I attribute this to the marvels of modern medicine, including chemotherapy, radiation, Herceptin and Arimidex.
I do agree with others that you should wait until you get the final word on your staging & consult with your doctors before making final decisions about hormonal therapy. #1 should be to do all you can to take care of yourself, including exercise, diet, stress reduction and prevention of recurrence. Not to add more stress to you, but your issues with needing to continue employment could be seriously endangered if you have a cancer recurrence before you can afford to retire!
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Optimistic traveler...congratulations on NED for many years now. You are doing everything right.
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My first post after my battle, I just found this site and wish I had looked sooner. I had a double mastectomy in April 2013 and started Tamoxifen shortly afterwards. The got all the cancer with no metastisis so I guess that makes me a survivor. I am not sure I feel that way just yet.. but am working on it! At first it was just the hotflashes that were bothersome, but it has progressed to insomnia, tiredness, joint aches and some depression. Lunesta has helped with the sleeping and I am trying Lexapro for the hotflashes and depression but it causes major nausea so I don't know how long I will stay on this. I had cervical cancer and complete hysterectomy in 2010 so I am not even sure I need to be taking Tamoxifen but I guess better safe than sorry..
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