Anyone diagnosed while on tamoxifen?

ChrisNM

Hi all- 3.5 years out on my first stage 1 IDC (ER/PR+), Treated with lumpectomy/SNB and radiation, and have been on Tamoxifen for 3.5 years.Now I have a new pathology report of IDC,  in the other breast.  I am still waiting on receptor data, and will see the oncologist next week.I assume this is a new primary since it is small and in the other breast.

 I am wondering if there are others here who were diagnosed while on tamoxifen, and if that fact changed their treatment plan.  It would seem worse to develop a new cancer while on treatment than not, so I am wondering if others have walked this raod and what they did.

Thanks,

Chris in NM

SoCalLisa

I was diagnosed with Atypical Ductal Hyperplasia in my remaining breast while on Tamoxifen..I had an excisional biopsy then switched to Arimidex nine years ago and finished up five years ago..

Bren-2007

A friend of mine on this site was diagnosed with DCIS after taking Tamoxifen for four years.  Her screen name is Happy Libby if you want to contact her.

Sending you best wishes,

Bren 

AbbysMom

Yup.  Recurrence to axillary node 2 years after double mastectomy + chemo + tamoxifen.   Recurrence was still ER+ so had full hysterectomy and oophorectomy, along with axillary dissection, chemo, radiation and now arimidex.

There are many treatment plans and options out there, we are all different.

Hugs,

AbbysMom

RetiredLibby

Hi, Happy Libby here (hey, Bren!). Yep. I was dx in 2007 with DCIS 1 cm Grade 3 with comedonecrosis. Lumpectomy, reexcision, huge margins, 28 regular rads, 8 boosts, started tamoxifen 12/1/2007. Few SEs... Some joint pain, some mental fuzziness, nothing that couldn't be attributed to being in my 50s. My hair did get delightfully thick and bushy, though!



Fast forward to routine mammogram June 20. Oops. Needed immediate stereo bx. Well, looky there -- ANOTHER area of DCIS. Grade 2/3, cribiform & solid, with necrosis. Received the path results June 24 and threw away the tamoxifen. I went all-out with treatment. Bilateral mastectomy on August 23 with immediate DIEP reconstruction. DCIS in surgical path report was 1.5 cm. Intermammary nodes were fine; SNB was ultimately not performed although we tried -- they couldn't locate the sentinel node with either the radioactive tracer or the dye because it had been damaged during 2007 rads. Prophy breast was completely clear.



There is some question about whether it was a new primary or a recurrence. I tested BRCA 1/2 negative in 2007; because of a strong family hx (maternal grandmother, mother, maternal aunt, sister who just progressed to Stage IV), I was recommended for the BART test for a large rearrangement -- also negative. After I complete my Stage II DIEP surgery in February, I am planning on having an oophorectomy in the late spring. At 54, I am still determinedly pre-menopausal and those puppies are coming out.



I will not be continuing tamoxifen since it failed me. I will not be taking an AI because it is not recommended for DCIS and those ovaries are going, although I could be persuaded if evidence shows a benefit. No rads because I already did those.



I don't regret taking tamoxifen -- 50% of the time when DCIS recurs, it recurs as invasive. I cannot say with any certainty that tamoxifen DIDN'T help me come down on the non-invasive side of that 50%. If I had it to do over again, I would do exactly the same thing.



And DAMMIT, I am just now watching NBC Nightly on the announcement at San Antonio that they are going to use the Oncotype DX test for DCIS now. I would not have changed my treatment plan now, but I might have moved up the mx had I known then!



Anyway, that is my long and complicated story!



L

flfish

wow, did I come back to this site at the right time!  I was diagnosed 3.5 years ago, lumpectomy/snb, radiation and tamoxifen.  Just went today for mammo, then order for ultra sound, now needing an MRI.  I am worried too and was wondering the same thing.  However, yours in in a different breast, mine is in the same.  You must be younger too Chris (I am now 44), since you are still on tamoxifen.  Please, if anyione has info, please share.  Keep us informed on what goes on Chris.

ChrisNM

Thanks everyone.  Just trying to get my feet back under me, and your stories help. I figured I would not be alone, and now i see i am not. So sorry each of you gals is facing this.

flfish, I am older than you- but only now may be entering menopause.  51, and having ablood work this coming week.  Thanks ladies, and I'd love more info.

ChrisNM

flfish

Good luck Chris, I hope your testing goes well.  I go back to the oncologist tomorrow and see where I go from here.  Fingers crossed all around.  Be in touch.

ChrisNM

Thanks, flfish!  Praying for good results for you.  I also see my oncologist today, and we'll see what the plan will be.

ChrisNM

donnajrn

Wow, and I felt I was the only one.   DCIS 3 1/2 years ago, with 3 years of Tamoxifen after radiation.  Was ready to stop the tamoxifen because of the side effects............or at least go off for about 6 weeks to see if the side effects stopped.............then, mammogram(flunked), stereotactic biopsy(LCIS),   MRI(negative)..................have excisional biopsy  scheduled in 4 weeks.  Maybe if I had not been on Tamoxifen.....might have been worse...(? invasive) LCIS just seems to mean.....big chance or not of developing invasive over the next few years............treatment goes from close monitoring every 6 months  to BMX............looks like I will have some decisions to make.

Donna

ChrisNM

Current recommendation from my doc: bilateral mastectomies, and removal of ovaries.  Still a little undone by it all, and trying to gather more information about my pros/cons.

 

Chevyboy

I hope you guys keep posting on here.....!  My question has been have any of you had cancer come back after taking Tamoxifen, Femara or Arimidex?   And yes, some of you have!  I would like to think that taking Tamoxifen or the other Als, is supposed to prevent that! 

And does that mean it has spread, or is it a new one, and is it the same type? 

I had to quit Tamoxifen because I became deaf, after 14 months.....that is over a year ago now, and not taking anything, except vitamins, and supplements.

If you gals are getting cancer  while being on Tamoxifen,  how can we think that it is helping us not get cancer again?

comingtoterms

I came upon this post and would like to get it back out there! I am also interested to know if the recurrence rate differs for women who continued to menstruate despite A/C/T chemo and Tamoxifen. I am close to 52 and still get irregular periods. I truly believe there must be a correlation. Estrogen is the enemy. You do what you can to get rid of it but some of our bodies continue to produce it. I swear that is me! It defies reason!

Tammy

bevin

HI Tammy, has your Onco ever testes your estrogen levels?  Perhaps they could if they' haven't.  You also could potentially try Lupron shots to quiet your ovaries? I'm sure you discussed these ideas with onco but thought I'd throw them out there just in case.

pinkimpatiens

Hi. I'm new and this is my first post. Would any of you care to share whether you were taking Wellbutrin or other SSRI's before your breast cancer recurred while taking Tamoxifen? 

I have finished one year of Tamoxifen, and started Aromasin 3 months ago. 

dragomirova

Hi,

I had lumpectomy + rads to R breast less than a year ago, started tams in October.  Yesterday US showed a lesion in the L breast.  Waiting for a biopsy in 2 weeks.  I know it could be benign, but although I'm trying to keep cool, am worried of course!  Anyone else had a recurrence less than a year after first diagnosis?

Best to all!

rose111

Hi everyone,

This is my first post to this group.   I had a positive biopsy, lumpectomy, radiation and tamoxifen  almost 5 years to the day of my second diagnosis.   Sine both occurrences are on my right side, I am preparing for a mastectomy.  Not sure if it is a recurrence or new.   The radiation oncologist says this happens  less than 2% of patients, but I wonder......    I am 53 and have taken tamoxifen for 5 years and have never taken Wellbutrin.    I have not had periods for at least 4 years.   What a group we are!