26 yrs Old - DCIS - ER+/PR+ - Tamoxifen?

Your oncologist should be explaining the path report to you.  I agree with JanetinVirginia about getting a second opinion--it always helps.

I will say that in the begining, my oncologist was on the fence about me and tamoxifen as maybe not being necessary.  But when the path report came back from my lumpectomy, she changed her opinion and put me on it.  Can't remember why but there was something "precancerous" about my path report.  I have been on tamoxifen since August with no discernable side effects.

You've had a bilateral mastectomy, you have ADH (but not DCIS) at the margins, and your oncologist wants you to go on Tamoxifen?  Hmmm........

What you need to find out is what recurrence risk your oncologist feels you have.  And once you find this out, speak to another oncologist to get a 2nd opinion about it.  

Normally after a bilateral mastectomy for DCIS, the risk of recurrence or the development of a new BC is about 1% to 2%.***  Tamoxifen can cut this risk by approx. 50%.  That sounds great, but a 50% reduction of a 2% risk is only 1%.  So the benefit of taking Tamoxifen for anyone who's had a bilateral for DCIS is very small.  The benefit is in fact less than the risk of serious side effects from taking Tamoxifen (not to mention the possible quality of life issues).  So under normal circumstances, there is no reason why someone who's had a bilateral mastectomy for DCIS (or any high risk or pre-cancerous condition) should take Tamoxifen. Yes, Tamoxifen can reduce the small risk that you still face, but the fact is that you actually put yourself at greater risk (of other conditions) by taking Tamoxifen.

The difference in your case may be the close margins.  But the margins are ADH - and ADH normally doesn't even need to be removed.  Perhaps your oncologist feels that because you had the DCIS, which would have developed from ADH, this means that the ADH that remains is likely to turn into DCIS.  If that's his feeling, then he might believe that you have a significantly higher risk of recurrence or the development of a new cancer.  That is the only reason I can see why Tamoxifen would be recommended.  To determine if you want to take Tamoxifen, you need to know what this risk level is.  If your oncologist says that your risk is 10%, you may feel that a benefit of a 5% risk reduction (50% reduction off the 10% risk) is not worth it to you.  Or maybe 5% would be worth it (only you can decide that).  On the other hand, if your oncologist says that your risk is 40%, then you most likely will feel that a 20% risk reduction (50% off the 40% risk) is worth it.  But without this information about your risk level, you cannot make this decision.

I hope that makes sense. If your oncologist is not willing to tell you your risk of recurrence or the development of a new BC, then definitely go see another oncologist.  You should not be asked to make this decision without having the information that you need.

*** To the point above, "after a bilateral mastectomy for DCIS, the risk of recurrence or the development of a new BC is about 1% - 2%", please note that this applies only to those who've had a bilateral mastectomy for DCIS.  Although this is the DCIS forum, I know that others read here and post about their experiences.  Women who've had a lumpectomy for DCIS (or any other diagnosis), those who've had a single mastectomy for DCIS (or any other diagnosis), those who've had a bilateral mastectomy for invasive cancer, all face different risks and therefore will derive different benefits from taking Tamoxifen.   

Very good questions and responses. Thanks. 

Beesie,

can you discuss the recurrence risk for unilateral mastectomy for DCIS? (and the relationship to taking Tamoxifen).  My oncologist did not recommend taking it, for the small risk reduction benefit.  He said we could always re-asses it in the future, as I was on the fence about trying to get pregnant again.

Also, I have heard the same comment about birth control pills.  The only additional info about it that i heard is that as time goes on since you stopped taking the pills, your increased risk goes down.  after a certain amount of time (it may have been 10 yrs) there does not appear to be an increased risk as compared to the rest of the population.  Sorry, I don't have a reference for this. Anyone else?   There appears to be so much info about HRT for women, but very little about birth control pills.

Hey CantStopNow,

I have no clue about what you should do. BUT, I do know, knowledge is power, so get all you can. 10 years ago,( at the age of 29,)  5 months after chemo and rads, (-,-,- markers) I got pregnant. It was a shock to us all. 9 months later, had a perfectly healthy baby boy, with no complications for either of us. I was lucky. I'm not suggesting that you get pregnant right away. Just saying, it may still be a possibility for you. So stay positive and get well. 

flowerpetal, I had a single mastectomy too and my oncologist recommended against Tamoxifen for me.  Here's how he explained it to me:

There are 3 areas in which Tamoxifen provides a benefit.  How much benefit each of us gets in each of these 3 areas depends on your diagnosis and type of surgery. 

The first area of benefit is a reduction in the risk of local recurrence.  If you have a mastectomy for DCIS and you have acceptable margins, your risk of local recurrence is only about 1% - 2%.  Tamoxifen can reduce this risk by almost 50%.  But a 50% reduction of a 2% risk is only 1%.  So the actual benefit in risk reduction is very low - Tamoxifen would reduce the 1% to 2% risk to 0.5% to 1%.

The second area of benefit is a reduction in the risk of distant recurrence (i.e. mets).  Someone with pure DCIS has no risk of distant recurrence so there is no benefit from Tamoxifen.  In my case, I had a microinvasion of IDC so I do have a very small risk of distant recurrence, but just like the point about with such a low risk, the benefit in terms of risk reduction works out to be very small.

The third area of benefit is a reduction in the risk of a new BC, either in the same breast or the opposite breast.  For those who've had a mastectomy, the risk of new cancer in the mastectomy breast is only about 1% - 2%, so here again the benefit from Tamoxifen in terms of risk reduction would be very small.  The bigger benefit is protection of the remaining breast.  Any of us who've had BC one time are at higher risk (than the average woman) to get BC again.  My oncologist told me that my risk was about double the average for someone my age.  I was 49 when I was diagnosed; the average 49 year old has an 11% remaining lifetime risk to get BC, so my oncologist estimated my risk to be about 22%.  Although Tamoxifen can reduce the risk of BC development by almost 50%, the thing to keep in mind is that our risk is spread over our entire lifetime - to age 90.  For me, this 22% risk was spread over 41 years.  While taking Tamoxifen for 5 years does provide a benefit well beyond the 5 years (at least 10 years, possibly 15), it's not believed to provide a benefit for as long as 30 or 40 years. For this reason, my oncologist estimated that my benefit from Tamoxifen would probably be a risk reduction of only about 4% (from 22% to 18%). When I did my own calculations, I confirmed this.  Because our risk to get BC in any given year increases as we get older, my oncologist suggested that I might want to relook the question of whether to take Tamoxifen later on, however he didn't recommend it for me at the time.

That was how it was explained to me. Since your oncologist gave you the same recommendation that mine gave me, I'd guess that he was using the same logic. 

I hope that makes sense.

Cantstop-

 I am 30 years old, i had a mamo b/c of family history at 28 they saw calcifications and said come back in 6 months...in those 6 months i was pregnant so i didnt not go back until 1 and a half years later. which was this past July and was DX originally with DCIS high grade had BMX in Sept and found 2mm microinvation, and mulitfocil invasions which put me at Stage 1a it was HER2+++ and grade three and ER/PR 30-40% intermediate. had several opinions and researched a ton, including a major cancer center. my options were do nothing b/c the size was small, chemo + hercpetin + tamaxifen or just tamaxifin. I choose a low dose weekly chemo for 12 weeks, (im currently on number 10 and side effects are minimal and i have used the cold caps to keep my hair! yay! ) and will be doing herceptin for a year. none of this chemo talk concerns you but i wanted you to have some background. tamoxifen is a choice for me and i am most likley NOT going to take it. the more i have read it is not necessarly as hightly effective in younger woman and i am a bit older than you. if i had just DCIS like i originally thought the BMX was my treatment and i was not going to take tamoxifen. do you know your % of er/pr status? unless it was very very high i dont really see why you would even consider it?

 now gettting pregnant again- i have talked to 3 different oncologist one of which has shared two studies with me- ALL THREE  ONCS SAY getting pregnant post an early stage breast cancer shows no clear risk of recurrance both distant or local. they have actual found, although they are not sre why, there are protective factors that are involved in getting pregnant and life expectancy in those who had babies post early stage bc had longer life expectancy, now they dont know why might be questioning the fact that it is the healthy mother syndrome and woman take better care of themselves but the verdict is still out. i have decided taht bc is not going to run my life i want another baby maybe even two. so i have choosen to eat healthy, continue to exersise and have a postiive attitude those are the things i can control so i will do them! for me i am just hoping the low dose 12 weeks of chemo does not do anything to my fertility. and if i cant concieve i WILL NOT be taking any sort of fertility medication. just hoping god will bless my family with another little one after this who journey is done. i finish herceptin next OCT my onc wants me to wait 6 months to help clear my body of everything and then i can start trying.  hope this helps!

Jen

Cantstop,

i know what you mean about the why didnt i do that feeling??!! that is how i felt about my HER2+ and decided on the chemo herceptin route which many disagree with. everything with BC is a personal discision and what you personally can feel confident and most comfortable with in the long run with your treatment! why not try taking it and see how it goes? if you find the side effects are unbearable then its your bodies way of telling you not to take it. also, many woman on here have taken it for 2-3 years stopped got pregnant and went back on to finish out the five. there are options but the best part is that either way your prognosis is excellent. it is such a double edged sword great to find it early and when we are young and treat it but thn again i know what you mean, this is the peak time of life, i just got married three years ago, had our first baby and six months after our first baby found out about this!!  you will be able to have babies and probably lots of them! happy wedding planning!! i loved planning my wedding!! i say all the time i wnat to get married all over again...to the same man of course!!! take care! - Jen