Bottle o Tamoxifen
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Hi KKay5525,
I am in same position as you are regarding tamoxifen.
Except I am post-menopause.
I need to look some things up, but hope someone knows answer:
Why is tamoxifen used?
to prevent:cancer in same breast that had/has cancer?
help other breast from getting cancer
help if a cancer cell has spread to another body part?
Clearly the radiation was only to prevent future incidents in same breast.
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Tamoxifen can prevent a recurrence (either local or in another part of the body) and protect against a new primary cancer (e.g. the other breast). It works by starving the breast cancer cells of estrogen by blocking their estrogen receptors. Without estrogen to feed on, they die.
How important each of those things will be to you depends on your diagnosis and treatment choices. For example, someone with pure DCIS and a bilateral mastectomy has no chance of distant recurrence (pure DCIS cannot metastasize) and little chance of local recurrence and/or new primary due to having most of the breast tissue removed. For someone in that position, it might not be worth putting up with the side effects for what is a small potential benefit. For someone with invasive cancer (ie chance of distant recurrence) who had a lumpectomy (plenty remaining breast tissue for a local recurrence or new primary) it might provide more benefit. It also depends on how strongly your cancer responded to estrogen.
Something to remember about Tamoxifen if you are on the fence about taking it is that the risk of severe side effects is VERY small, and the more common, so-called quality of life side effects will dissipate when you go off the drug, so it is possible to take it for a while to see how you tolerate it, and then go off of it if it doesn't go well.
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thank you Annette47 for your helpful response.
My path report had:
The ductal carcinoma in situ (DCIS) demonstrates:
Estrogen receptor (ER): POSITIVE - >90% strong intensity nuclear staining; Progesterone receptor (PR): POSITIVE - 80% strong intensity nuclear staining.
ER clone (SP1) ultraview DAB detection PR clone (1E2) ultraview DAB detection.
So, I guess some people have less of a ER response? Learn something new each day!
for some reason which I cannot figure out, my response skips spaces between lines.
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Lifelover - Thank you for sharing your experience. I do believe that everyone is different and that a positive attitude is extremely important! . Also, it is my thought that Effexor has "weight gain" as SE also. I hope that you can get off the Effexor without too much trouble.
yikes1 - I am looking for any information too that I can find. If I could narrow down the actual percentage of "cancer risk" I gain w/Tamox that would help. It's all so confusing.
Annette47 - I keep hearing "try it" first before I decide. Do you know if there are any negative implications from not starting the Tamox right away? Feeling like I need to "get over" the radiation treatments before starting another treatment with SE. I appreciate your obvious knowledge on the subject.
Everyone have a Merry Christmas :-)
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KKay - I started Tamox one month after my last radiation treatment. Got the "a-ok" from my Onc and took a month breather between treatment and the meds.
Happy holidays to everyone
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Interesting...I had a full hysterectomy and oophyrectomy and no one told me to stop taking tamoxifen before, during or after so I just kept popping the pills all the way through. Did they say why you should stop taking them for the surgery?
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lw, not positive, but it may be because Tam can cause blood clots...
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Oh, that makes sense. They were actually giving me meds to cause my blood to clot before surgery. I guess this why they weren't worried about whether I was taking tamoxifen or not.
I have horrible joint/lower back pain now at 43. I was told it was arthritis. Anyone else have the same issues on tamoxifen? I want to keep taking it but some days can barely move and today is one of them.
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Yes I have terrible low back pain and my left leg aches and gives out in the thigh area, I think Tamoxifen makes everything worse. especiallly if you already have a problem,
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hi all,
A bit complicated story as I had previous cancer about 20 yrs ago - inv cervical ca. Radical Hysterectomy... Complicatios from that was severe pain and scar tissue around ovaries... Long story short - eventually both ovaries removed hence surgically induced Menopause immediate severe hot flashes, night sweats, etc. began estrogen tx which helped curb hot flashes tremendously. That was around 2005. )From age 18 on I've had several biopsies and such for dense breasts and cysts...) in April 2011 Dx IDC in Left Breast - had lumpectomy, internal rad with Savvy Applicator high doses, 2xs daily for 5 days... The whole while having this eggbeater style tool inserted in my Breast with tubes hanging out that hooked onto radiation machine twice daily before which I had CTs before ea treatment
it sucked it was uncomfortable and I really believe I was the second patient this Radiologist ever tried this on! She was relieved of duty before my next appt with her? So I started AIs - oh So Bad! Felt I Must be dying! Tried aramid ex then Famara sp? Too severe of side effects so switched to tamoxofen... Started off easy enough.... But weight gain, low low motivation, increase in arthritic pain eventually didn't want to leave my bed. My relationship almost crashed and burned along with me! So after some awful times in 3 years including social anxiety severe sweating and all the awful side effects I decide to stop the Tamoxifen after my partner said she was unhappy and wanted to split up to work on it??? Also have been lowering dose of Effexor as well. Lo and behold... Dizzy and sweating severely. I too have seriously contemplated this for at least a yr. My Onc said "if the cancer comes back there's no cure". Oh well! Feather die somewhat happy then die miserably!
Got other issues to discuss but I'm dozing off and barely able to think. Hope this makes sense to somone.
Merry festivus!
Ps did I say I'm sweating so bad again im feeling a bit discouraged!
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LW0919---I am up for a hysterectomy and ovary removal Jan 20th. They told me to stop Tamoxifen 2 weeks early due to possibility of blood clots so that is why. May I ask how your hysterectomy was? What type? What recovery was like? I'm trying to mentally prepare which keeps me calm. Did you go into immediate surgical menopause and was it horrific like I hear? How did you deal with it since I'm sure you can't take HRT. Did you stay on Tamoxifen?
Sorry for all the questions and if I'm being nosy, I'm just getting a bit nervous!!
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Hi lala: I had a hysterectomy in 2 stages in 2008 at 44 yrs. First, I had the uterus removed in 2/2008 and then the ovaries in 6/2008. The removal of the ovaries triggered immediate surgical menopause. My Dr put me on Premarin, which I took for 5 years. At the end of the 5 years, in 2013, I was diagnosed with BC in right breast. The actual surgeries were fine. The most pain was in my abdomen. It took a couple of weeks to resolve. I hope this helps. Lis
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Lala1: all in all it wasn't too bad. I had prepared for it to be much worse. Don't get me wrong, it was pretty painful the first week but I took pain meds every chance I had. I went into surgical menopause, I have some pretty ferocious hot flashes, so bad that I feel like I'm going to combust if I don't get some air! I've caught myself standing with the freezer door open to cool off. It works. I was supposed to have been out of work for 6 weeks but had a desk job so started working from home after 2 weeks and was back in the office after 3 weeks. It's frustrating at first but if you keep walking, it gets easier. My OBGYN told me to go home and start walking up and down steps. I hated him for that but it really helped. I'm still taking tamoxifen under the advice of my MO because I've only been on tamoxifen for a little over a year and the other option I could only take for 3 years. She wanted me to have at least 5 years of estrogen therapy if not 10. I can't take estrogen replacement therapy because of the bc but Irecently started taking Wellbutrin. My primary dr said that it would help with energy and sex drive since I've noticed that all of that started to go down hill. I've been on it a little over a week and think it's starting to work! I've got to say, it's so nice not having to worry about heavy periods, or any for that matter, anymore! Good luck with your upcoming surgery. I hope you find that yours goes smoothly too.
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I have questions
For those that had Ovary removal, do you still take Tamoxifen? What was the reason for the removal? I'm wondering if I should consider this option because I hate taking Tamoxifen already.
Did you have ovaries removed due to your doctor's advice or was this something you thought would aid and preventing a recurrence?
I took a break from Tamoxifen per MO's instructions because of headaches and blurry vision....and ears were ringing. After the break she said to start back every other day for 2 weeks and then back to everyday. I've been taking it everyday for the last few days and I swear I feel like I'm loosing it. This weekend was bad, I was off emotionally and physically. Does this get any easier?? I felt so anxious and irritable then sad, not to mention exhausted.
Now this could be from the holiday hangover, but I don't think it is totally from that. I just wondered if anyone experienced this and if it subsided eventually.
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My ovaries were removed due to cysts, yet I am still on tamoxifen since estrogen is produced in other areas of the body.....sorry the surgery will not eliminate this toxic drug
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LW0919 and Lili---Thanks for the info! It really helps me to get prepared. Might I ask.....what type of help did you have after hysterectomy? Mine will be TLH and all my docs say way easier than mastectomy but maybe harder than exchange surgery. My DH says he can handle my care "no worries" but my sis in law has offered to come help like she did after mx (and she was a blessing!). I'm thinking I don't need her to sleep at hospital with me that night like she needed to after mx, but how many days do I need her? Or do I need her at all? Like can I get out of bed myself? Shower alone? Blow dry my hair? Get dressed? Hubby won't be far but he wouldn't be near the help she would be. Just wondering if I need her. Figured I'd ask here since so many have done hysterectomy AND mastectomy and can compare.
Thanks!!
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lala, I had laproscopic HX and Ooph at the same time; it was pretty easy for me. I think I was achy for about a week, but other than restrictions on lifting and driving, it was a breeze. I think I took RX pain meds for a day or so, then, just OTC meds. You may need help with housework; vacuuming, taking out trash, groceries, etc. Just because you aren't supposed to lift anything for a few weeks. You probably won't need much, if any, personal care. Best of luck. You'll do fine!
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Finally had GI consult because of the reflux and nausea I've had since starting Tamoxifen. Doc was very nice. It's good I finally had my appointment because since Thursday, I have not eaten anything without Zofran for nausea, and my throat feels like someone dumped acid down it...all day...so it has worsened in the past week making me wonder if something else is going on. He ordered an abdominal and chest CT for tomorrow, and an endoscopy next month. I have never had a CT , or any scans, so suffice it to say I am nervous. Logically I know that all will probably be fine, but I am still a nervous wreck. Uuuugh. I hate cancer.
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i begin tamoxifen in 3 weeks after radiation, what advice can you give me as i go into this 5 year commitment? are side effects instant? is there a certain time the medication should be taken? is weight gain inevitable? are periods irregular?
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Somehow I got kicked out- anywho looking forward to all
of your advice in this next grand step of BC. My intro is below. I'd never heard of Goserlin before today and quite frankly I'm on the fence- it just wasn't the plan and its fried me today, the change- anyone out there doing this combo? Should I go for it or refuse and just stay Tamoxifen? Lord, the decisions I'm making these days, and I used to fret over finding a good tomato...
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kbee - I hope you get some answers that are easy fixes - your symptoms sound so awful. IT made me wonder if you are allergic tamoxifen. I don't know if that is possible , but your reaction is so strong
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I have been on Tamoxifen for 3 weeks now. The first week was fine, no side effects. Since then, I have been having lots of late afternoon into the night bloating, uterine cramping and constipation. Does anyone know if these are common side effects. I'd been told that Tamoxifen if my only option for dcis since mine was not invasive.
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You would have thought that having your ovaries out would get you off the Tamoxifen hook, but no dice here. I had my ovaries out after my niece was diagnosed with ovarian cancer. (This was after my surgery, chemo & rads were completed.) I was already post menopausal, with an estrogen negative cancer ... but here I am 2 years later, still on the Tami. My Onc looks at me with 2 heads every time I say I want to quit taking it. She said it is as important as my chemo.
I have horrific peripheral neuropathy, for which I take Gabapentin, 600 MG 2x a day. That stuff is MAGIC.
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CAS4, how long have you been on Tamoxifen? Some studies show it's better to be on Tamoxifen for 2 years then switch to an AI. Others show 10 years is better than 5. I think it is a crap shoot, but what's important is that you take whichever your body an best tolerate.
My CT was clear, thankfully, but did show a little focal fat distribution in the liver. That generally has no symptoms, and fatty liver is a known thing to happen with Tamoxifen; it generally produces no problems though, so I am thankful for the all clear. GI doc started me on Protonix and is seems to be helping a lot with the heartburn. As long as endoscopy shows no damage, he's OK with me staying on Tamoxifen with symptom control. I hate feeling like a walking medicine cabinet, but am thankful that different medication options exist.
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I've been on Tamox for about 3 months now, and for the past 3 weeks or so I've been having hot flashes and night sweats (soak the bed night sweats). I'm 45 & my mom didn't go into menopause until 55ish. I had a very light period in Nov., but nothing since. I did a pregnancy test as a just in case-not pregnant.
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ChristyJ - are the hot flashes the only SE you are having? I meet with MO end of this month to talk about tamox. I can't commit 100% as of yet. If I have a 6% chance of recurrence and with tamox 1/2 that = 3% is it really worth it? Sure wish I had a magic ball or something…haha.
Have a Happy Day!
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I feel like the tamoxifen is going to be my "insurance" to keep bc away...hopefully...I was stage 2b and had 3 positive lymph nodes, chemo radiation...the whole shebang!! So I am thankful there is a drug that, for me, will help in preventing recurrence ...now whether or not another type of bc pops up , is a different story...a real crapshoot.
Side effects for me have been mild...some hot flashes...but most bothersome is elbow pain and forearms...like arthritis?? Not sure if it's from tamoxifen or chemo...I also take generic Wellbutrin so that may help with SE's of drug. Rosie
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KKay, when I started taking it I had extreme exhaustion. I also have had flashes of bone pain periodically. That seems to have subsided. I work out 3-4 times per week and am determined to not have gaining weight as a side effect.
I have LCIS and a significant family history, so reducing my risk seemed worth the side effects. My breast surgeon said the amount of LCIS they found was tiny, so I'm not "married" to Tamox. But she also said if I ended up with a positive diagnosis at some point, she'd hate for me to have regrets about not taking it. At 45 yrs old (44 when I started it) and 2 teenage daughters, I decided that I would give it a try.
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I've been on Tamox without SEs for two months now. My dx was like Rosies, and my treatment more radical, but I still want that extra insurance that Tamox is proven to give.
My onc said don't go into any stage of your treatment with preconceived notions. She was right, since I my preconceived concerns about each stage turned out to be false and my whole treatment has gone off without any SEs to speak of.
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Rosie and Christy - I believe that I have read about bone pain being one of the possible SE from Tamox.
Traveltext - Good advice from onc I believe. Trying to stay positive and give Tamox a try….
Have a Happy Day!
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