Tamoxifen and High Risk

I'm high risk due to the combination of LCIS and family history (mom had ILC)--I have mammos alternating every 6 months with MRIs, US as needed, frequent breast exams, and just finished my 5 years of tamox about 2 months ago. While frequent monitoring is a very good idea, the MRIs and mammos don't prevent anything; while the tamoxifen  is a preventative medication and can reduce your risk up to 50%. I wanted to be proactive and do something to help prevent an invasive bc in my future.  Some docs don't recommend tamox for ADH, but it sounds like it is a good idea if it is bordering DCIS and you have family history. Why are you considering going off of it--SEs?

Anne

Dear Msdede, 

I guess you could say I'm REALLY high risk because I've had ILC on one side and just was diagnosed with LCIS on the other side.  I still don't regret my decision to stop Tamoxifen after eight months.  I had so many side effects (wild mood swings even on an antidepressant, ovarian cysts and an endometrial polyp, vaginal bleeding, probable benign intracranial hypertension, leg cramps, etc).  Not to mention the risks of Tamoxifen...uterine cancer and blood clots (and there is a strong history of clotting disorders in my family...my maternal aunt and uncle both take Coumadin and have vena cava filters to prevent pulmonary emboli).  Since my original cancer was small and low grade, with negative nodes, my oncologist determined that the risk of recurrence was already low and the Tamoxifen only added a few percentage points in my favor. So I stopped taking it with her full blessing.  I know that she'd like me to consider an AI when I get through menopause (I'm 51), especially with the recent LCIS diagnosis, but I figure we can cross that bridge when we come to it. 

I guess I'm somewhat of a fatalist, too.  I am willing to accept a little bit of increased risk for improved quality of life.  It took a few months for my hormones to even out after stopping the Tamoxifen, but it was so great to feel like myself again, plus the ovarian cysts and polyp promptly went away.  I eat pretty well (mostly organic, plenty of fruits/veggies, no soy, only locally and sustainably raised meats) and try to manage my stress (truly a work in progress!).  Most importantly, I make sure to get plenty of exercise.  Strenuous exercise decreases your circulating estrogen levels and can reduce risk of recurrence, especially for ER+ women.  

Bottom line, every woman is going to differ in how they approach this thing, how much risk is acceptable, and what is best going to fit into their individual clinical picture.  I tend to make a lot of decisions with my gut/heart and this feels right to me. 

I wish you luck and good health!  Keep up with your screening schedule (by the way, awb's regimen is very similar to mine).  My radiation oncologist tells me "you're never going to get rid of us" and I suppose that's true.  Good thing I like my docs.

I was dx with ADH/ALH and LCIS in May 08.  I have a weak fm hx. Practicing risk management with diet and exercise.  I have declined Tamoxifen due to risks/SE's.  It's just not worth it to me.  My 67 yr old, physically fit maternal aunt was dx with LCIS--recently had a stroke just after finishing 5 yrs of Tamoxifen.  This sealed my decision. 

Good Morning Ladies, I am new to this site and appreciate having a place to discuss my situation with other women.  I was diagnosed with High Grade DCIS in November.  I am Hormone  Receptor Positive.  The cancer was only in the left breast.  I had a simple mastectomy on Dec 15 with immediate reconstruction, so I have an expander in place behind the muscle.  I have my first appointment with the Plastic Surgeon for starting the saline injections in the expander on Jan 6 and an appt with the Oncologist on Jan 7 to discuss starting the Tamoxifen.  My general surgeon said I need the Tamoxifen or Reloxifen (?) because I am HR Positive.  I have been reading these posts concerning side effects but am not aware of just what they are.  Please let me know what I can expect from this drug.  I know not everyone has SEs or at least not the same ones, but I am curious as to what you are experiencing. 

I still have some swelling in my breast, but the RN at the PS office told me the PS will probably start the injections anyway.  They are to be weekly for about 3 months, then the permanent sillicone implant will be put in.  I am having a Brest Reduction and lift on the right breast at the same time for semetry.  I am currentlly a double D and want to be just a full C cup.  This surgery has been more painful than I anticipated and I assume the next surgery will be worse since I will be sore on both sides.  Can anyone tell me how long the recovery period usually is for the second stage of surgery?  Thanks for all your help.

You may get a better idea about possible tamoxifen side effects on the Hormonal forum, below.  I've had some uterine polyps, and some mild hot flashes. (I am off tamoxifen at the moment, but will start up again soon, for other, nonrelated to tamoxifen side effect issues.)

You may also find more answers to your breast reconstruction questions inthe breast reconstruction forum, below.  

Welcome to the boards!

Hi- I have been on this rollercoast for almost a year. I had breast reduction surgery January 2008, and within a month found out that i had LCIS. I saw many specialists before i found the Oncologists that I am using. I really like him but he does want me to go on Tomoxifican. I have not done it yet. I see him every 3 months and have a mammogram every 6 months. I do not have this in my family but he would like me to try it. I just can't get up the guts!! I am on Wellbutrin (anti-depressant), i have been on this for a few years, and that concerns me too. Yes i was also told about the option of a mastectomy, but I am not really thinking of that too much yet. Good luck on your decision, I am still in the throw of it and will probably be thinking more about it this new year.

I had my first baseline mammogram at age 35. Had my first annual mammo at 40. I was recalled because there had been a change.  The next mammo confirmed microcalcifications and I had stereotactic biopsy that same day (2/3/09) and ADH was found.  On 2/26/09 I had a Breast MRI w/ die contrast.  The results were no suspicious findings.  On 3/3/09 I had a excisional biopsy and I am extremely thankful to say I do have ADH but the biopsy revealed only fibrocystic changes. I will have follow-up mammograms every 6 months and see my Onc surgeon after Mammos.  I believe I will continue annually to have the MRI.  My surgeon offered me Tamoxifen... but I don't feel that I am ready for that yet. 

Hi Lisa,

I am new to the BreastCancer.Org site and have just been reading posts for the last few weeks, and have not posted....BUT, I am in practically the extact situation you were in just over a year ago and was hoping you coud update me on your health as I have some decisions to make.I have just been diagnosed with ADH after a surgical biopsy on June 4th. This was after a lump was found in my left breast during a routine mammogram and ultrasound in Feb. of this year, 2010. I had to get a core needle biopsy (which was the worst!!) and it came back that it was a papilloma. So, I saw a breast surgeon  who recommended it be removed. He scheduled an MRI prior to surgery to make sure there was nothing else going on in either breast. The MRI showed two small masses, still in left breast...had both of those core needle biopsies...they were benign and although the oncologist said I should take them out along with the Papilloma because I have "busy" breast tissue, my breast surgeon and I decided not too because all three lumps were in different quadrants and that was a lot of cutting. So, I had surgery...with the two wire guides put in and had the original Papilloma taken out. The surgeon decided to do a deeper margin as well...All of this happened in a matter of 4 months....The pathology report came back with ADH as well as some other things, Sclerosing Adenosis, Fibroadenmatous hyperplasia....Sorry for the long story......ANYWAY, I am a single mom, 42, no real family history and I have NO family here for support. My weight is same as high school, eat extremely healthy already, exercise, don't smoke, have had too many glasses of wine sometimes, but that is over! BUT, 2 decades of huge stressful events!! And, I mean big and handling it alone...SO, I am convinced that has really taken it's toll on me inside!! I am working on healing up the past and so that nasty stuff gets out of me...I am meeting with the Oncologist again next week (1st time since ADH was diagnosed)...and my BS said she'd probably want to me to start Tamox and heavy survaliance . I am OK, with the survaliance but not so much with the Tamox, or even possible mastecomy. This is pretty scary and overwhelming!! I thought it was all going to be over after the surgery!!!???
I would appreciate any info you could share with me and hoping, praying that things are turning out good for you!!! I wish that I'd read about people with ADH, get it out, do nothing else, and never have to deal with anything to do with cancer again!! Is that possible?? Do those people just not post, or maybe they live with ADH and never know, so we never know??

Thank you so much and wishing you welll!!! Best, Lisa

Hi Anne,

 Thank you for responding. It's kind of funny out of all the people's little sayings, that I actually wrote yours down on a piece of paper 2 weeks ago that says, "I don't know what the future holds, but I do know who holds the future." So, Thank you twice!!

You are right, I do tell myself many times during the day that I am very fortunate to have the knowledge, technology, etc. that I wouldn't have decades before, and that this is so very early...I DO!! Then there are more moments of that I CANNOT believe that I am dealing with this "C" word..I have been so darn blindsided by this but I am determined to get all the info I can, make the best decisions for me, and live a long happy, loving life. Thank you for reminding me to stay focused on the positives!! I feel completely nuts lately...one minute strong and positive, the other crying and scared-sick to pieces....but, I know that I haven't been dealing with this long (12 days since ADH dx)...and it will get better?? Right?? How did you tolerate the Tamox? I'll keep plugging forward, gathering info, etc, and meet with my oncologist next week to hopefully come up with a good plan!! I am happy to hear that you are doing well and thank you for sharing!!