DCIS...some thoughts...

Jen42 - You are not a Debbie Downer!  That does pull at your emotions.  My best friend and I have always had jokes in looking back at old pictures that we wish we'd have appreciated what we had when we had it!!!!!!

DeeLJ - That affirmation of having done the right thing is always so good and you're not left with the questions in your mind of if you did made the right choice or not.   I know that many think a BMX is overkill for DCIS but those of us that have done it have our reasons and and comforted in the knowledge of that.

DeeLJ -- wow, you must be so relieved you went with BMX, considering your path report. WHEW. That's the tricky thing about breast cancer...doctors can't know what's really going on in there...

Regarding lymphedema comments...I'm same as DeeLJ, no nodes were taken so my risk of that complication was very low. And I had no complications of any sort after surgery, very lucky -- all these "little things" help one feel validated in their choice, I think. Deciding on BMX for early-stage cancer is such a huge decision, there are so many pros and cons to weigh...my angst at that time between diagnosis and surgery is still fresh in my mind. But, as I've said before, I don't regret my decision -- I regret having had to make any decisions regarding cancer at all.

Ann -- so sorry to hear what you are going thru...the lymphedema of the lower extremeties (not breast cancer-related). Now you have to deal with that -- I would be overwhelmed and discouraged, too! -- and then you feel like you don't really fit on the LE threads. Come here and vent anytime !

I just read through this whole thread.  Wonderful.  So much of this I could have written myself.  I  had a rt. MX w/ TE's - no chemo. no rads. And yet how traumatic so much of this has been! The worry, the decision making, the heartbreaking loss of my breast and my fears re: the AI I know MUST take and the potential for side effects,the potential for a recurrence.  And outwardly - I am told how good I look.  This is very comforting, yes, but few really know the true emotional and physical impact of this surgery and diagnosis. I am grateful too that my BC was found early, was highly treatable and that we have the option of reconstruction, so recently unavailable to women in the past who had disfiguring and debilitating mastectomies.  But recognizing the positives does not negate the overall impact.  BC.org has been such a wonderful support for me as I have gone and continue to go through this process. 

Hugs to all of you,

Molly

The waiting is one of the hardest parts.  Good luck to you as you wait for results and try to have patience.  If I had to do it over again, I would spend much more time staying busy.  In the end much was decided for me by a competent medical team and my medical test results and individual situation.  The internet searching made me informed but I spent a lot of time reasearching things that ultimately didn't apply to me.  This site, though has been very helpful for the support. My best to you.  The first few weeks are tough.

kathyob,

Interesting question.  That 1 in 8 statistic (12.5% risk) is a little misleading.  That lifetime risk number takes into account both the much smaller risk for younger women (for example, 1 in 233 or .43% for women aged 30-39) as well as risking probabilities for older women.

Because age affects risk at any particular moment, I'd check w/ your oncologist to see if the risk number he gave you was a lifetime risk number or a number specifically for you after those treatments.

LisaAlissa 

kathyob,

First, there are two risks that have to be considered - recurrence risk (a recurrence of the original cancer) and the risk of a new primary cancer. These are completely different.  The 1 in 8 stat refers to new cancer risk so I assume that this is what your oncologist was talking about.  

What my oncologist told me is that someone who has been diagnosed with breast cancer, whether it was DCIS or invasive breast cancer, has approx. double the chance of the 'average woman her age' to get breast cancer again (a new diagnosis, not a recurrence of the original cancer).  

So building on LisaAlissa's comment, I was diagnosed at the age of 49. The average 49 year old has an 11% (or 1 in 9) of chance of getting breast cancer through the remainder of her life (to age 90).  This meant that my risk was about 22%.  The good news is that for every year we are not diagnosed, our risk goes down.  This is a concept called "leaving risk behind".  This isn't often well explained but I was lucky that my oncologist explained it to me. As LisaAlissa explained, BC risk increases with age. That's true - our annual risk does go up. When you are young, your annual risk to get BC is less than 0.1% per year. By the time you are in your 70s, your annual risk is more than 0.3% per year, triple that of a much younger woman. But as you age, because you have fewer years left until you turn 90 (the assumed age of a "natural" death), your lifetime risk goes down. Think of it this way: you can't face a risk for something that has already happened.  Lifetime breast cancer risk covers all the years of your life; as you age, you leave behind the risk for the years that you've already lived.  So although my lifetime risk to get BC again was 22% when I was diagnosed at the age of 49 six years ago, today, having not been diagnosed over these past 6 years, my lifetime risk is down to about 19%. Every year that I'm not diagnosed, my risk continues to drop.

Of course for each of us our own personal health history and family history needs to be taken into account; this could increase or lower your personal risk. But "double the average" is the general rule that my oncologist told me and one that I've heard over the years from others here who've had this discussion with their oncologists.  Then there are oncologists like yours who say something completely different. I'd rather than your oncologist be right but I suspect that there's more truth in our having more risk (than the average woman) now that we've been diagnosed, rather than less risk.  

kathyob,  you are right about Tamoxifen being helpful to you because you have a higher risk of getting a new BC, but your oncologist is also right that Tamoxifen is optional for you particularly because you had DCIS and DCIS isn't life threatening.  In fact Tamoxifen has 3 benefits:

1) It reduces, by about 45%, the risk of a local recurrence, i.e. a recurrence in the breast.  For someone who has high grade DCIS who has a lumpectomy with narrow margins, the risk of a local recurrence, even after radiation, could be quite high.  If the risk is 20%, then Tamoxifen can bring the risk down to 11%.  On the other hand, for someone who has low grade DCIS and has a lumpectomy with good margins, the risk of local recurrence, maybe even without radiation, might be very low.  If the risk is 6%, then Tamoxifen can bring the risk down to 3.3%.  As for those who have a mastectomy, unless the margins are very close, generally the recurrence risk without any other treatment is about 1% - 2%.  So here the 45% recurrence risk reduction from Tamoxifen would work out to be less than 1%, at most.

2) It reduces the risk of the development of new breast cancer. This is the benefit that you mentioned. As above, the benefit is about a 45% risk reduction but the math isn't quite as simple as in the previous example.  Tamoxifen is taken for 5 years. Last I checked, the studies had shown that it retains it's full benefit for at least 10 years and maybe as long as 15 years but studies have also shown that eventually the benefit wears off. Most local recurrences happen with the first 5 years and the vast majority happen within 10 - 15 years and for this reason it's fair to calculate the 45% recurrence risk reduction against your full recurrence risk. But the risk of the development of a new BC is different - this risk is spread over the rest of your life, which for most of us covers a much longer period.  My 22% risk to develop BC again (referenced in my earlier post) was spread over 41 years, from age 49 to age 90. If I assume that I'd get the full 45% risk reduction for 15 years and 1/2 of that benefit for the next 5 years, this works out to only about a 4% reduction in risk, from 22% to 18%.  Of course all of the risk reduction benefit is within the next 20 years so this is not insignificant.  And for someone with a higher risk level, the benefit would be greater.  But still, the amount that Tamoxifen reduces the risk of a new breast cancer is not a great as most women think (and as many doctors imply when they recommend Tamox. to their patients) because the benefit doesn't cover your full lifetime risk.

3) It reduces the risk of a distant recurrence, i.e. metastasis.  This is the most important benefit and this is the one that your doctor was referring to. Anyone who's had invasive cancer has a risk of mets. For those who have only a small amount of invasive cancer - my case with a microinvasion, for example - the risk is very low, maybe only 1%.  But for those who have larger areas of invasive cancer and/or nodal involvement, the risk might be quite high.  Even a small reduction in the risk of mets is important to most women.  However for those diagnosed with DCIS, there is virtually no risk of mets.  I say "virtually" only because there are rare cases where a microinvasion is missed in the pathology, but assuming that not to be the case, those with pure DCIS face zero chance of mets. This means that the most significant benefit of Tamoxifen simply doesn't apply. And that's why your oncologist said what he did.  

What it comes down to is that everyone who is deciding on Tamoxifen should consider each of these three areas of risk reduction and determine, with their oncologist, what the benefit is for them in each of the three areas. This benefit should be weighed against the risks that come from taking Tamoxifen - like all drugs, Tamoxifen comes with the risk of some serious side effects, although the percent of people affected is quite low.  Tamoxifen also has quality of life side effects, and these can influence the decision as well.  For someone who had a lumpectomy and who had a large invasive cancer and/or nodal involvement, taking Tamoxifen (or an AI) might be a pretty easy decision.  For someone with DCIS, as you can see, the decision is not always as obvious.