Decision making tourture.

StacyRose, 

You said "I think my surgeon gave the increase of 1% per year as a blanket statement. At the point she said it, she didn't know all the specifics of my situation and was referring to all breast cancers not just DCIS. "  Sorry, but what your surgeon said is wrong for any type of breast cancer.

Certainly it's true that not all BCs recur on the same schedule - some are more likely to recur within a shorter period of time and others are more likely to recur after a number of years, but under no circumstances does recurrence risk continue to increase by 1% per year.  We all start with whatever recurrence risk we have after our treatment is completed, and from there the risk goes down.  Always.  Whatever the type of breast cancer, whatever the diagnosis.  The degree to which the risk goes down over time varies based on the type of diagnosis, but it always always goes down over time.  Looking at the risk year-to-year, the peak years for recurrence might be 1-2 years after diagnosis, or 3-4 years after diagnosis, or with some types of BC, maybe 6-7 years after diagnosis.  But once you get past that peak period, the remaining recurrence risk that you face will be significantly smaller and will decline every year.

It is true, as you say, that our chances to develop a new primary BC increase as we get older. But the numbers are not anything like what you were told.  "The breast care coordinator mentioned to me that we go from 10% chance at my age to a 1 out of 3 chance by the time we reach 55. "  NO. NO. NO.  Absolutely wrong.

Here is the information about BC risk by age from the National Cancer Institute:  http://www.cancer.gov/cancertopics/factsheet/detection/probability-breast-cancer

A woman's chance of being diagnosed with breast cancer is:

• from age 30 through age 39 . . . . . . 0.43 percent (often expressed as "1 in 233")
• from age 40 through age 49 . . . . . . 1.45 percent (often expressed as "1 in 69")
• from age 50 through age 59 . . . . . . 2.38 percent (often expressed as "1 in 42")
• from age 60 through age 69 . . . . . . 3.45 percent (often expressed as "1 in 29")

Filling in the chart, under age 30, the risk is about 0.2 percent, and from age 70 through to age 90, the risk is about 4.29% (which is equal to about 1 in 23).  This brings the average woman's total lifetime risk to 12.2%. 

So no, we don't have a 1 in 3 chance of being diagnosed with BC at age 55.  Not even close. Over the entire 10 years of our 50s we have a total risk of 2.38%.  So our risk in the year that we are 55 is only 1/10th of this number, or about 0.238% per year. That's less than 1/4 of a percent risk during that year. Another way to look at it is to say that every year of our 50s, 1 in 420 of us (all women in our 50s) will develop breast cancer.  And that means that over the whole 10 years of our 50s, 1 in 42 of us will develop breast cancer (as per the chart above).   

But maybe your breast care coordinator wasn't talking about what our risk is when we are 55. Maybe she was talking about all the BC risk that we've faced by the time we are 55. So another way to look at it is to say that by the time we reach the age of 55, the average woman will have faced 3.27% of her 12.2% lifetime risk.  This means that by age 55, about 1 in 31 of us will have developed breast cancer.

Here's how BC risk works.  The average woman in North America has about a 12.2% chance of being diagnosed with breast cancer during her lifetime (estimated to age 90).  This means that 1 in every 8 women will be diagnosed with BC at some point during her life.  As we get older, our annual risk increases - that's what the numbers above show.  Over the 10 years of our 30s we have a 1 in 233 chance of developing BC but over the 10 years of our 60s, we have a 1 in 29 chance of developing BC. So yes, annual risk does increase as we age.  But total risk declines as we age.  The reason is because as we age, we "leave risk behind" for all the years that are past. This can be a difficult concept - and StacyRose, to be perfectly honest it seems to be a concept that the medical professionals that you are talking to don't understand at all.  

Think of it this way:  If the sidewalks are icy today and you go out for a walk, there might be a 20% chance that you might slip and fall.  But once today is done, you don't carry this 20% risk over to tomorrow should you also go out for a walk again tomorrow.  Today is over and you leave today's risk behind.  Tomorrow the weather might be warmer and the sidewalks might be clear so you might only have a 0.001% risk of falling - the 20% risk you faced today is no longer relevant and certainly isn't added to the risk that you face tomorrow. 

It's the same with breast cancer risk. Your lifetime risk is divided up and spread over all the years of your life; once a year is past, the risk that was associated with that year is also past.  So by the time you are in your 60s, although your annual risk is higher (0.345 % risk per year vs. 0.145% risk per year in your 40s), your lifetime risk is no longer 12.2%; what remains of that risk is now down to 7.76%.  You no longer have to worry about the risk that you faced in your 20s, 30s, 40s and 50s - that risk is past and gone.

Of course, for any of us who've been diagnosed with BC, it's believed that our future risk to be diagnosed again is increased.  My oncologist told me that generally our risk is doubled, although of course personal factors need to be considered as well.  But if we say that our risk is doubled, it means that at 55 (my age today), our risk is 0.476% per year - that's still just under 1/2 a percentage point risk. And it represents a 1 in 210 chance. That's my risk this year. I was diagnosed when I was 49. The average 49 year old has an 11% remaining lifetime risk. So my oncologist estimated my remaining lifetime risk to be 22%.  That risk is spread over my estimated remaining natural life of another 41 years. So that works out to an average of just over 0.5% (a 1/2 percent) risk per year. 

I hope that this isn't too confusing.  And I apologize for getting into so much detail but I find it very frustrating when such incorrect information is passed along. StacyRose, you need to decide what's right for you, and I don't want to change that. But I do want to ensure that you are making your decision with accurate information, not the complete and utter bu!!$#i+ that you've been told. Sorry for being so blunt but anyone who says that we have a "1 out of 3 chance by the time we reach 55" to get BC is an irresponsible idiot. My suggestion is that you not take my word for any of this, but please talk to your medical oncologist.  

Hi, Beesie--

Thanks once again for wealth of info. Totally agree that recurrence risk goes down as time passes; no argument there. To use a completely hypothetical example that I hope may be clearer than my previous example, if a person had a 5% risk of recurrence in year 1 after treatment, a 4% risk in year 2, a 3% risk in year 3, a 2% risk in year 4, and a 1% risk in year 5, I gather my RO considers that to be a 15% risk over the entire five-year period (adding up the percentages for each year). Does that jibe with your understanding?

I don't even know if this is germane to the larger discussion anymore--my apologies if not--but just am curious to know if this fundamental idea of things is unique to my RO or what.

Speaking of the larger discussion, when I chose to have a lumpectomy and intraoperative radiation, my surgeon pointed out that if there was a recurrence, I could then consider having another lumpectomy and external radiation before having to consider having a mastectomy. That is, having the lumpectomy and IORT inserted another step in the whole process, and that idea was appealing to me.

However, it's a very personal decision, with so many factors. I can totally understand someone wanting to say goodbye to the potentially troublesome body parts right away, for once and for all.

Thanks,
Linda 

Im just weighing in here.  I had DCIS in one breast.  The radiologist and oncologist told me that with "clean" margins after lumpectomy and radiation, my changes of recurrence were around 15 percent. I was told that I had about a 20 percent chance of developing a new cancer in the remaining breast.  Went to another doctor, who told me that given the extent of the DCIS - more than 7 cm - she recommended mastectomy on the one side.  I decided on bmx so that I would not spend the next twenty years worrying (I've already had 4 biopsies in the non-DCIS side).  I had the surgery in April, no recon.  The pathology found additional DCIS (about 2 cm) in the breast where the lump had been removed, despite my first surgeon telling me I had clean margins. The only thing I regret is the SNB, which I understand, new studies indicate may not be necessary. 

I was diagonsed with multifocal DCIS in my left breast 20 months ago, and had a mastectomy, 8 lymph nodes removed, all were clear. There was no choice, the DCIS was everywhere, lumpectomies would not have been possible.

Ok, fast forward to 14 months after that surgery. I had a fine mammogram on the right side, but had to have a MRI also, because a mammogram never found the DCIS in the first place. Ok, so the MRI shows 3 new places that needed biopsies.

My doctor explained that after a cancer diagnosis, it often means many biopsies on the other side, or on even the remaining breast to be very cautious. And MRI's find mostly anything innocent or not.

The spots could not be found with an ultrasound, so I n eeded a MRI guided biopsy. it was torture for me...and believe it or not, it still came back Inconclusive!!!

I simply could not take the drama anymore, and I had my second breast removed...the final results are :no cancer.

And I am a very happy woman to not have to deal with this anymore. I never realized before that once you are a cancer survivor, it seems everything and anything flags...if that had been explained to me, I would have had both breasts removed at the first time.

Stacy,



I have the exact ex as you. DCIS Grade 3, ER/PR positive. Wow a month ago that was German to me! I told myself, what? I can't have cancer, I don't have time for cancer, they must have made a mistake. I had the same reaction from my surgical team on masectomy vs lumpectomy. I chose bilateral masectomy with reconstruction. I felt I wanted to be aggressive since I had an aggressive high grade. I have not regretted my decision. I had surgery dec.20th. Pathology report showed invasive tumor in the breast tissue, must have been hiding because surgeon did not see it during surgery and tests never picked it up. All said and done, said to the surgeon see glad I did a masectomy, his response was, you still could of had lumpectomy with clear margins and radiation. It boil down to choices, and I didn't want to ever look back again, it's you own choice, keep reading others stories, and something will click. Also they found the start of pre cancer cells developing on the non cancer side. For me I made the right choice.

Very good! I'm glad you have made a decision you are happy with, StacyRose. I hope for the very best with your surgery and reconstruction.

Linda