Dcis and tamoxifen?

Yes, I have been on Tamoxifen for several months now.   I don't think it's an uncommon part of a treatment plan if your growth was ER+/PR+. 

Hi Jonesy, did you do a bilateral or unilateral mastectomy?  If there is still one natural breast, then the Tamox would be appropriate to try to prevent a new cancer in that breast.  If you had bilateral mx for pure DCIS, it is rarely recommended that one take Tamoxifen, and the average recurrence rate for bilat DCIS is 1 to 2 percent, and if you had nice clean margins, that would be your recurrence risk.  If you are brca positive (which I assume you aren't), then the recurrence risk is higher.  If there are dirty margins with DCIS, they sometimes treat the margin with radiation. There was a recent case where there was a narrow margin (<1mm), and I think the surgeon recommended either Tamox or Radiation.  Beesie, any comments?

As far as your anxiety goes, it's understandable to basically complete treatment, and then worry about recurrence, but if you really did do bilateral mx, your odds of moving on really are good.  It takes awhile to live with the uncertainty that comes with the end of treatment.

I had a uni. mastectomy on right side for DCIS 12/15/10.  I tried Tamoxifen and it made me feel really depressed.  Where I already have a problem with depression and am on medication for it, my doctor felt it's o.k. for me not to take it.  Quality of life is important too!

I had a small DCIS in right breats and had lumpectomy and rads. I took tamoxifen for a year but couldnt handle the joint pain. Now considering a PBMX as i fear my risks for recurrence and new cancer go up from being off tamoxifen. Wish they had a better way to predict my risk level...making such a decision is so hard and confusing.

Hi, I'm 46 and just had a unilateral mastectomy in December for DCIS intermediate grade.  I tested negative for the brca 1 & 2 gene.  I opted for the mastectomy to avoid radiation treatments.  I am two weeks in on taking tamoxifen.  I have reservations about taking the medication but I personally feel it is important to reduce my chances of a new breast cancer.  My oncologist discussed other drug therapies other than tamoxifen that is available depending on your age, disposition with menopause. I am a runner and hope it doesnt interfere, I will ride it out and see how I feel. 

The day of my mastectomy I spoke with one of my nurses and she said she had DCIS when she was 38 and did not take tamoxifen.  14 years later the cancer came back, she had to have that breast removed as it had been radiated to much and a lumpectomy was not an option.  I know it's only one case but food for thought.  Also, if you had a nipple sparing mastectomy that would make a difference too, as your nipple is attached to your milk ducts and it only takes one cell for cancer to grow and DCIS being in the milk ducts it can travel.  I also took chlomid when I was 33 and even though its doesnt seem to be a determining factor for BC I am finding out by word of mouth that many other women developed BC that took it as well.  As with a mastectomy it is a personal decision what you do in regards to follow up treatment.  Good luck

Ariom:  I'm glad you posted your thoughts. I was diagnosed in October 2013 and had a uni on Jan 21 with reconstruction.  My BS said it was my decision as to whether take Tam or not .  I thought I would try it but with my research it scares me so I have decided not to take it.  

Thank you and everyone else on here for the thoughts and ideas ... 

Thanks, everyone, for your posts and thoughts.  I have read all your posts with great interest. 

Another "uni" here (right) 3 months ago, with recon.  I see my oncologist again this week for a discussion.  Last November, she took all history and blood tests to determine hormone levels as I still had my period last summer- (I know, probably not a good thing!).   I am hoping she will provide me with the data I need to be able to decide.  I am super sensitive about weight gain, having dealt with anorexia as a younger girl, and depression (been there, too).  I guess I'll figure out what my risks are and go from there.  Can you think of anything I should specifically ask?

Thanks, Ann

I went for a second opinion because I tried the Tamoxifen and had too many adverse effects. The MO had me stop the med immediately and gave me some good evidence suggesting that I may be over treated. There were a lot of reasons, some good, that my first MO and BS wanted me to try the med, but at the end of the day my margins were very good, no invasion and risk was estimated at 12-13% of a new primary with 1-2% risk of recurrence. The numbers didn't justify an impaired quality of life. 

That is my individual case. 

I am very comfortable with not taking the medication. 

Edit to add: My MO also encouraged continued exercise and controlling my weight as equally effective steps to take to control my risk.

Lily-- long time ED sufferer here. I will most likely need to go on tamox since I am strong e+p+.  If weight gain is a side effect, I know I will have issues. I have had anorexia since I was 13-- now 45. It is under control ATM, but you *know* how tenuous it can be.

I also have depression and anxiety issues and am on zoloft and xanax. *sighs*

thanks for such good questions and advice. But why does it seem the more I read, the more everything seems to get more wonky?

For what it's worth, I've struggled with my weight most of my life and haven't found anything changed in that area after 10 months on Tamoxifen.  Losing takes the same huge amount of effort as it always did, but I haven't actually gained anything other than the normal winter few pound gain, which I'm already getting rid of.

faerywings,  You won't be bugging me at all!  I definitely don't mind.  Dealing with an eating disorder makes treatment a lot more of a challenge.  I may be bugging you! LOL     Yes, winter brings on the cravings for sweets and fruit is slim pickings this time of year.  

Thanks faerywings! :-)

Giabellasmom, it's true that tamoxifen is not used for those who are HER negative, but there ARE treatments available. The article Treatments for Hormone-Receptive-Negative Breast Cancer at the main Breastcancer.org site will give you more information, until you hear from other members with their own experiences.

Best wishes,

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