Tamoxifen?

Nana60

I am supposed to start tamoxifen and am wondering how many of your ladies with DCIS are taking it? And if so, how are the SE?

Linda603

I'm supposed to start taking it too!  I've had the prescription for over a month, and just got it filled.  I'm thinking about starting on Sunday.  I have three doctors, and two of them strongly recommend I take it since I was a Grade 3.  I'm finally feeling great again, so I'm not looking forward to the tamox and it's  potential se's.   

Nana60

I keep putting it off too! I guess we just need to take the plunge.  Thanks so much for letting me know that I am not alone in this!

prektchr

Count me in too! My dr. wasn't really pushing it said my choice.My dcis was grade 3 also....12mm. Filled perscription 3 months worth  and it is sitting in my cabinet.Just finished rads and will probably start next week....maybe! tuff decision to make for all o f us.

Anonymous

I have LCIS and took tamoxifen for 5 years (now take evista for further preventative measures); I tolerated it well with really minimal SEs, mainly hot flashes. Just be sure to get a yearly trrasnvaginal US to monitor both the uterine lining and the ovaries.

Anne

clare2

My DCIS was grade 2, 6mm. I had a lumpectomy and just finished radiation - 33 including 5 boosts. I am ER(very) and PR (slightly) positive. Tamoxifen has been recommended, but I am not planning on taking it. I was on the pill until my diagnosis and fibroids and cysts run heavily in the family-not cancer. Though I CERTAINLY do not wish to encounter this ever again, my prescription would be to (possibly) prevent new occurence of cancer in the opposite breast. I think that this makes the decision more difficult (I am lucky) as I am not having to consider it a survival decision. -If it were, I would put up with minor and serious side effects risks.

Currently, I am really a mess when my hormones fluctuate right before my period. I was told not to worry too much about uterine issues as a hysterectomy is really "no big deal." This was said to me by two very kind generally sensitive female doctors. Frankly, I think any surgery is a big deal- my mom had one due to a huge cyst that threw everything out of whack. Further the mood, cramping, disrupted sleep  etc. of Tam. is not something that I could deal with for 5 years. I also don't like the recent research statistics unique to DCIS that if it returns to someone who has been on Tam. it tends to come back as a more aggressive invasive. All this said, I am somewhat nervous about my decision and I have not yet told my oncologist. ( I am 51, normal weight and exercise quite a bit-healthy other than a benign fibroid 4 years ago. -my DCIS was picked up in digital mamogram.) I'm glad you posted about this. I really need someone to talk to about it outside of my "standard of care" medical team.

Nana60

Clare2 - I am unable to locate anything that says that those with DCIS who take Tam are at a higher risk of more aggressive cancer if it does come back. (Although I have seen it mentioned on this Board.) Can you post a link? Thx.

Jelson

1.5 years on Tamoxifen!

I think the SEs are worse for the premenopausal than the post-menopausal woman. I am post-menopause and maybe my hotflashes changed in character but I can't say they have worsened on the tamoxifen. Am getting the transvaginal ultrasounds and switched from an optometrist to an opthalmologist to be followed for cateracts. 

It was a big deal for me to start the tamoxifen too. However I kept in mind that I can always stop taking it if the side effects become intolerable. 

re: the study -  I think it found that the women taking tamoxifen were more likely to get ER- BC if they were to get another bc tumor. I will look for ithe study  too. Perhaps somewhere in all the material from the NIH Consensus in 2009?  

http://consensus.nih.gov/2009/dcis.htm

Julie E

cmf

I am glad I read this board.  My ONC never mentioned side effects other than occasional hot flashes which he said, are rare in post menopausal women.  What are all of the side effects?  I was planning to start tamox after I complete my RADS.

Lindy137

I started Tamoxifen in September.  Noticed some minor side effects about 2 to 3 weeks in but they are mininal now - some nausea, leg and back aches, flushed face and forearms.  I'm having headaches but I had those prior to September so they may just be associated with going through menopause.  Try not to look at the SE and get discouraged - of course no one has all of those.  My onc said about 15 percent of his patients don't stay on Tamoxifen for one reason or another but the rest find a way to tolerate it.  Some patients don't notice anything while on it.  Tamoxifen has been criticized a lot over the 30 years it has been used, but they still seem to come back and be able to demonstrate that it does considerably more good than harm.  It's a difficult decision and everybody has different thoughts on it.  I can remember standing in my kitchen looking at that first little white pill.  It's emotional.  I finally told myself I was going to continue the fight and follow my doctor's orders.  I might feel a little funky sometimes but if I can reduce my chance of more bc, I'm going to try to ride it out but not everyone is up for the ride and I totally get that.  Everyone's situation is different and you have to do what makes you feel good.   

Happy New Year!   

               

dutchgirl6

I began taking Tamoxifen on Nov. 1, so I have been on it exactly two months.  I have been experiencing hot flashes, but no worse than I had during chemo.  I have also been having trouble sleeping, but again, no worse than during chemo.  I have come to the conclusion that this is my new normal.  I did not hesitate when my onco prescribed it to me, I wanted to do everything I could to prevent having to go through this again, down the road.  I have a very strong family history of breast cancer, and am waiting to have genetic testing.  I realize that there are no guarantees, but if this little white pill helps, bring it on.  Everyone has to decide what is right for them, and as Lindy137 said, it is emotional.  I think that whatever decision we make, we have to be comfortable making it.

Happy New Year!

Nana60

Thanks everyone for sharing your experiences and thoughts on Tamox. So true that this is just another step we are taking to do everything we can to keep BC from coming back. (I was thinking more along the lines that it was my enemy, when in fact, it is to help me.) I am going to take my first pill next week.

Happy New Year Everyone!

Pennythoughts

I notice that a lot of you are saying that you are starting Tamox after finishing rads.  Is there any particular reason for that?  I was sent to the chemo onc first who decided no chemo, but started Tamox the same day.  I don't see rads onc until next week.  Do any of you know a reason why it would not be good to be on Tamox while going through rads?

Pennythoughts

Sorry, just noticed that this thread was started about ladies with DCIS.  Hope it's OK that I asked the question here . . . )

bluefootboobie

My DCIS was a 4.6 cm mass.  I had a lumpetomy in November, and just completed radiation with the Canadian protocal (double daily dose in 1/2 the time).  My radiation oncologist suggested I see a medical oncologist right away, but getting one on my insurance plan took a month, so I actually just met mine Thursday.  What concerned me were her words, "You don't have to take the tamoxifen since you only had DCIS, but if I were you, I would."   So that bothered me right away.  I am 43 and am concered about menopause.  The side effects and precautions overwhlemed me.  I started taking the calcium and vitamin D3 as she recommended, but have not started the tamoxifen.  My grandmother had breast cancer, but she was 78 years old.  This is all so new to me, as I am the healthy one in my family that exercises daily and eats right, with an occassional glass of wine at dinner (that recently has turned into daily!!!).  I am considering trying the tamoxifen for a month, as the oncologist suggested, but if I start menopause symptoms, will they go away if I stop taking the pill?

Thanks Nana60 for starting this.  Are any of you pre-menopausal?

PSK07

I have been on Tamoxifen for 2 years this March. I have had hot flashes/night sweats, mostly around my period, and they've been controlled by taking Effexor. I've been on anti-depressants for much of my adult life, so the Effexor is no big deal. The main SE is that my periods have diminished to once every 3 or 4 months. I'm 49, definitely pre-menopausal, and my onc says that if I stopped the tamoxifen tomorrow, my periods would be back to normal in short order.

Since my sister was recently dx with BC, stopping tamoxifen is not something that is going to happen anytime soon.

Lindy137

Pennythoughts - My onc told me he wanted me to hold off on taking Tamoxifen until I finished rads because Tamox kind of puts cancer to sleep and they want it standing at attention during rads so it gets a good zapping.  My rads onc agreed with him.  Some ladies in rads with me were also taking Tamox so obviously not all doctors agrees on this.  I think some of it might depend on how high risk the person is too.

Bluefootboobie - I had something sort of similar happen when initially talking with my onc.  He said since your tumor was small, you could probably get away without taking anything.  Probably!?  When I finished rads and went back to him he said he really wouldn't be comfortable not having me take Tamox.  My rads onc felt Tamox was a must for someone in my situation so I couldn't help but want to give it a go.  Those of us at a lower risk of recurrence don't benefit as much, so to speak, but if Tamox can cut the recurrence rate to something like half, that's pretty significant. 

Sometimes I think taking Tamox keeps me mentally in the game too.  I was one of those weirdos who got choked up when I finished rads.  I felt really energized during rads and I think it was primarily because I felt I was in the midst of the fight and winning.  Most people probably skip out of the radiation clinic doing the I don't have to come here anymore dance but I felt let down.  It was like someone pulled the rug out and I wasn't ready.    

    

prektchr

Lindy...I know how you felt about finishing up rads.OMG, I felt the same way ...thoughtI 'd be sooo happy.I was laying on the table  on my last treatment #33  w/tears in my eyes.I thought to  myslef I must be some kind of freak or something because everyday after getting zapped  I thought  can't wait to be finished and get onw/my new normal life.Read somewhere that thses feelings are perfectly normal.No we are not nut cases.Well, I might still be...jurys still out on that one.1 week out and I am feeling much better. Hope all is well w/you.Hang in there...we have all been through a lot. It's time to heal emotionally as well as physically.

Sandeeonherown

I started my tamoxifen 3 days after my radiation began because thte idea of starting just one more thing pretty much put me over the top..and I thought if I was goign to have a reaction, at least I woul dbe in the hospital on a daily basis and there would be someone to talk to about it. I was an emotional basket case some days and on top of my game on others...no physical fatigue to speak of but emotionally..now that is another story.... No one said that I should wait in order to 'zap my cancer' harder...oh dear...I WAS told not to take vit c, A or E supplements for that reason though.

I asked the technicians and my radiologist if my emotional state was normal...they seemed to think it was fatigue...fighting and staying chirpy and working full time taking its toll. Guess I should keep a journal of how things are going and keep tabs that way.

dutchgirl6

Pennythoughts, of course it's ok that you joined this thread, I was also diagnosed with IDC, and I'm here too.  My med onco wanted me to wait until after rads to start Tamox, and my rad onco agreed.  They wanted me to have a break between treatments, I had chemo then rads.  I went on a holiday a month after rads, and with my med onco's full support, I decided not to start until I came back, so it was 5 weeks between finishing rads and starting Tamox.  Another woman who was having rads at the same time as me was already taking Tamox, so I think that it depends on what your onco feels is the best for you.

bluefootboobie, I was pre-menopausal before this madness started, chemo threw me into menopause, and I doubt, because of my age (51), that this will change.  One positive side effect, I suppose. 

bluefootboobie

Thank you ladies.  Your feedback is appreciated.  The prescription is filled, but I have yet to start.  I noticed another chat where some women had a lumpectomy only, not even radiation, nor tamoxifen.   I had to drive 90 minutes each way to the nearest hospital for my radiation treatments, and I still have severe redness, soreness and irritation, but I am glad I completed radiation.  It is interesting how doctors are.  My radiation oncologist said radiation was a must, while the medical oncolgist says tamoxifen is a maybe.  I am used to being told what to do, so I freaked out when given a choice.  Perhaps doctors should not be allowed to use maybes and probablys.  I think the root of my problem is not being comfortable with my medial oncologist.  I am very comfortable with my radiation oncologist, and she recommended this medical oncologist, so perhaps I should seek a second opinion, although all of your opinions are extremely valuable to me! 

Lindy137

Prektchr - I'm glad to find out someone else got emotional when they finished rads.  Not sure how getting up at 5 a.m., driving to another state and being late for work everyday was so delightful, but somehow it was.    

My breast and under arm area is still really tender and I finished rads in late August, but I think that is fairly normal.  My surgeon said to expect changes for at least the first two years.  He also said the breast won't necessarily look the same a couple years down the road when everything settles in where it decides it wants to be.  I'm glad he told me that but it is hard not to keep checking the mirror.  So far, so good.   

It seems weird that someone would be told they didn't need radiation following a lumpectomy if they were actually diagnosed with cancer.  I was told if I chose a lumpectomy, then I had to do radiation.  My surgeon said it is a two-part process and he made sure I was willing to commit to radiation before he scheduled me for surgery.  My biopsy showed cancer so it was obvious what I was in for, except for the chemo part.  I suppose some women get lucky and find that their tumor wasn't cancer after all.            

   

Linda603

Well, ladies, I finally started taking the tamoxifen yesterday.  So far so good...LOL, it's only been two days!  I'll let you know how I'm feeling after a few more days.  

Lindy and prektchr, I too was VERY emotional at my last rad treatment.  Glad I'm not the only one who experienced this.   

Sandeeonherown

Good for you for starting the tamoxifen...I was told it is a numbers game..82% chance of no recurrence of cancer in the left breast with just surgery...92% if I include radiation and 92% chance of no cancer in either breast if I take tamoxifen for 5 years...I preferred those odds, though I have never handled medication of any sort well.  Still....I prefer the odds to cancer. I am going to ry what others have said and take the tamoxifen at bedtime instead of in the am. if that doesn't work, I will ry spliting it in half as others have said and take 10mg at a ime instead of the 20mgs all at once. perhaps that will help.

As for being emotional during raditaion... I decided to do it on my own...felt positive about it all and went to work before and after my treatment...the hospital is only a 6 minute drive from my home and 7 from work...but if my battery had run out on my mp3 player and i had to listen to the machine, I would weep through the treament...like the control on my emotions was very tenuous...not sure if it was he tamoxifen or just emotional exhaustion....but I do know I am tired of crying.

Lindy137

I'm glad you ladies are starting to take your T.  There's no other way to see how you'll do on it other than to dive in.  See if your forearms and face get warm and flushed over the next couple of weeks.  Since it's cold weather, maybe you won't notice it as much.  My forearms still smell like chemicals (especially the first few hours out of the shower) but my doctors say the excess T leaves the body through the urine.  Weird, huh?   

blondee327texas

HI everyone,  I have DCIS, lumpectomy on 12/22, Merry Christmas to me...   I am going to see the oncologist tomorrow.  I have pretty much opted out of Radiation and out of Tamoxifen...  If my DCIS was to come back, I couldn't have radiation again... I don't like the thought of Tamoxifen, I don't think there is enough trials out there to show the SE for long term...  My Dad had Lung Cancer and Prostate cancer, My GMa had bone or breast... Can't remember...  Dad did radiation with prostate, but NOT with lung cancer..> The doctors didn't like it, but he is in his 70's and decided that he didn't want to go through that again.

So that is where I am.  Undecided on radiation, but riding the fence until I speak with the onc tomorrow.  Also heard about SAVI, but heard bad SE from that, so guess that is out too...

Glad ya'll are on here and able to talk about it.  It sure has helped me just knowing I am not alone.

Hugs,
Deidre'

J9W

Hello Nana60,  I was on Tamox for 11 months before quitting it. I have/had DCIS, stage 0, grade 3 and had a mastectomy. Didn't consider lumpec because I didn't want to do rads.  For me, the Tamox hurt my bones....bone pain is one of the rare side effects but it got to the point that going up and down stairs hurt tremendously (and that screwed up exercising too). Now I'm on the 6 month plan: February for MRI and August for Mammo. So I have the pleasure of seeing my docs twice a year.

Now, that being said, everyone else on this posting is correct: this is a super personal decision. If it can help without hurting too much, take the help. If it hurts, come up with another plan.

Something I never considered was to cut the dosage in 1/2 (good idea girls) so that could be an option for you too. Good luck in this journey. You've found a great place to get advice.

helenap

i guess I was too afraid of dying to worry about side effects. I figured as my onc said, I can always stop taking it.. i too had a small amount of cancer wide margins, and radiation and still cant get it out of my mind that you can progress to stage IV and that scares me.. so Tamox I go... if I forget it at home when I am on vacation, i dont stress over it.. but except for the hot flashes which i just finished with menopause and now they are back. no real side effects so I guess I am lucky.. but as I watch my fellow sisters walk the Stage IV road, i consider myself fortunate that some sleepless nights etc are all I deal with.. so 6 months into it... i am alive and well.

Lindy137

Hi Deidre' - Did your surgeon talk to you about radiation at the pre-op?  Hopefully you've gotten some good general information so far - there is so much to consider in a short period of time.  My radiation was to my right side so only a tiny sliver of my lung was within the treatment area.  They say if you are healthy and take care of yourself, that little portion of the lung recovers.  I know some women have problems following radiation, but it doesn't sound like that is too common. 

Linda603 - How are you doing so far?                 

Nana60

Hi All, Thanks for sharing your experiences and the encouragement.  I am going to start my Tamox tonight. I can't help but be nervous about it, but I know that I would be even more nervous not taking it. I am diving in, here I go...

Linda603

Hi Lindy:  So far so good!  I found that I do need to take it with food.  I did feel slight nausea, so I eat a little something and then take it about 20 mins later.  Seems to be doing the trick.  Otherwise, I'm not feeling any SE's yet. 

Linda