Sick from Tamoxifen after 1 month

JenB

Hello, I was diagnosed with LCIS along with some atypia in April.( My mammogram showed a cluster of microcalcifications and I had a stereotactic biopsy and then an excisional biopsy). Anyways...my oncologist reccommended Tamoxifen which I took for 1 month and then quit out of desperation. I am now on a break from it until the 21st.  I felt so sick on this stuff. My main complaint was muscle weakness and fatigue. My question is did anyone else feel like this? Do some of the side effects go away after awhile? I am willing to give it another try, but if I can't function then not sure what else to do except the close monitoring. I feel very stuck.  I obviously don't ever want to get cancer, but if I don't take this stuff and get it how will I deal with the what ifs?

Thanks, jen 

Anonymous

Jen,

Sorry you have to be here!!!!!

Im taking tamox and I found the that first few weeks of it I felt off kilter, but it went away quickly....I also started my tamox using 10 mg in the morning and 10mg at night before bed so I think that helped alot...you might ask your doctor about doing it that way for awhile...I took it that way for about a year then moved to the full 20mg dose and continue to take that at night so if there are side effects I must be sleeping through them!!!!

These are some really hard choices and decisions to make but you will make the right one for you...

Jule

auroravtj

Hi jen, im also suppose to be on tamoxifen but just cant bring myself to take it. I also was diagn. with bc in april.(DCIS Sage 0 grade 3) I had a mastec on left side and thought that was going to be it but supprise! onc wants me on meds. Im really struggeling with it ALL. When your onc recommended tamox did he explain any reason or details why or did he just basiclly just say he wants you on it? did you have any say in what you wanted?    aurora

bfkh2t

Hi JenB:

I would ask the ONC what the exact benefits are for you and also what the risks are without. I have not taken, but my doc has also recommended after I am done with RADS. I am on the fence, but leaning against taking it.  I am also very curious about side effects and did a post awhile ago called "thoughts on tamoxifen" and got a few posts back about SEs that people were having.  I would suggest reading everything that you can about it, talking with your ONC about benefits vs risks and then listening to your gut feeling and embracing whatever you decide.  The thing with b/c is there are no clear cut answers and the decisions can be so difficult. All the best to you.

Anonymous

Jen--my situation is very similar.  I had suspicious microcalcifications on mammo, had LCIS diagosed after stereotactic biopsy, confirmed by wide excisional lumpectomy (fortunately, no invasive bc was found); given 3 options by bs--1) close monitoring  2) close monitoring and tamoxifen 3) bilateral prophylactic mastectomies.  I was already closely watched because of my mom's ILC and all of my docs (onc/gyn/bs/rad/pcp) felt BPMs were too drastic for my situation. I chose #2 as I wanted to do something proactive to try and prevent an invasive bc in my future. Fortunately I've tolerated the tamoxifen pretty well overall and have only  about 3 more months to go to finish up my 5 years. I've had SEs (hot flashes, insomia, achiness) which are annoying, but manageable--some days I feel crappy, but put up with it considering the alternative.  Sometimes it takes the body time to adjust, in some cases several months, so try to hang in there. If you want to talk, please feel free to PM me--we have our own little support group for LCIS here, as not a lot is written about it.

Anne

JenB

Hi all,

The oncologist is strongly recommending I take this. He said I have around a 25-30% chance of getting an invasive cancer in my lifetime. I was so on the fence when I first started researching this.  Changed my mind several times.Then found out about my aunts. I knew they had cancer, but was ignorant of the type. My maternal aunt had ILC on one side, had a bilateral mastectomy. They found LCIS on the other side. She was the same age as me( (43) when this happened. She took Tamoxifen for 2 years, but felt awful the whole time. She is fine now 10 years out. My paternal aunt had ILC- she was postmenopausal. Hmmm, don't know if there is a genetic link here.  So it made perfect sense to me to try and prevent this from happening. My thinking was that it would be foolish not to try if I could cut my risk by 50%. Didn't count on feeling just awful and so weak from the Tamoxifen. My struggle now is-- is it worth it to feel cruddy for 5 years? Most likely I'll never get anything---but then again--What if?   I'll find out more from my oncologist on the 21st.

jen 

Misty3

I declined Tamoxifen to avoid the side effects and the slim chance of uterine ca and blood clots.  I, personally, did not feel this drug was a health "bargain" and did not like the fact of treating my "risk". I also had a problem of knowing that even if I take it, I could still get invasive cancer.

I now try to lower my risk naturally with DIM.  I also exercise everyday and have radically increased my intake of fruits and especially ( cruciferous ) vegtables.  I am comfortable with this approach but will keep my Tamoxifen option open.  My family history is weak so this helps with my decision to decline.

It is a hard decision--I struggle with it too.  Good luck to you.

Joyce-PA

I am 56 and I have been on tamoxifen for 6 months.  My side effects are hot flashes/night sweats and lower back pain.  Just got results back from pelvic/trans vag ultrasound and my endometrium stripe has thickened (I assume because of tamoxifen).   My dr. suggested a D&C but since I am not bleeding, I'm not sure if I want to to that.  Honestly, if I am going to have a D&C,  I would rather just have a hysterectomy and take everything out.  I go to the dr. on Friday and have a list of questions I am going to ask to see  whether I should stop taking tamoxifen.  I am suppose to get another pelvic/trans vag in 6 months to check again.

Kimber

Jen,

I have been on tamox since Feb.  In the beginning I felt very flu-like, very achey.  I have been feeling very well lately, though.  My neck gets stiff, but I am not sure I can attribute it to tamox.  I have had some spotting but no real period to speak of.  My gyno said to just watch out for excessive bleeding - which I have never had.  I read on this site about a lot of women who have a hard time taking it, and I have a friend who is miserable on it.  Everyone is different.  I have a strong family history and after my diagnosis, I really have no choice but to be on it unless I want to go through extensive surgery.  Right now I would like to hang onto my girls and "monitor".  I didn't want to do that at first, but right now it is the right thing for me.  I have to put my faith in the tamoxifen!  I hope whatever you choose to do works out for you!

Kimber