Past post from Beesie on understanding DCIS

Re-Bump

Still bumping for those who may have missed the wonderful information that Beesie has given us.

Thanks again Mom2two!

Actually, the fatality rate of breast cancer has been consistently dropping.  I'm about to sign off now so I can't provide the data to support this statement but will do so later.

Okay, here is some information about breast cancer survival rates. But first, here's the very important thing to understand: All of this information is outdated. Why? Because in order to report 5-year, or 10-year, or 20-year survival rates, you have to go back and look at patients who were diagnosed 5 years ago, 10 years ago or 20 years ago - and the fact is that women diagnosed at those times did not have available all the treatments that we have today. In fact, because it takes time to collect, consolidate, analyse and report on the data, usually a 5-year survival stat will be based on women diagnosed at least 7 or 8 years ago. 7 or 8 years ago, Tamoxifen was not as commonly given to women who had DCIS; in fact, although Tamoxifen was approved in the U.S. in 1977 for women with late stage BC, it was not approved for women with DCIS until June of 2000.

Now, to the stats: The best source for U.S. breast cancer statistics is the SEER data from the National Cancer Institute.  Here is a summary of SEER data on survival rates from breast cancer (note that this is based on those diagnosed with invasive cancer only):

For those diagnosed between 1975 and 1979:

• 20 year survival rate: 52.8%
• 15 year survival rate: 56.6%
• 10 year survival rate: 63.0%
• 5 year survival rate: 74.9%

For those diagnosed between 1980 and 1984:

• 20 year survival rate: 55.0%
• 15 year survival rate: 58.9%
• 10 year survival rate: 65.0%
• 5 year survival rate: 76.9%

For those diagnosed between 1985 and 1989:

• 20 year survival rate: Data not yet available
• 15 year survival rate: 68.3%
• 10 year survival rate: 73.6%
• 5 year survival rate: 82.5%

For those diagnosed in 1991:

• 20 year survival rate: Not applicable
• 15 year survival rate: 73.7%
• 10 year survival rate: 77.9%
• 5 year survival rate: 85.5%

For those diagnosed in 1996:

• 20 year survival rate: Not applicable
• 15 year survival rate: Not applicable
• 10 year survival rate: 80.9%
• 5 year survival rate: 87.0%

For those diagnosed in 2001:

• 20 year survival rate: Not applicable
• 15 year survival rate: Not applicable
• 10 year survival rate: Not applicable
• 5 year survival rate: 89.8%

You can see that in every case, over every time period, survival rates have increased. For those diagnosed in 2001, the 5-year survival rate was 89.8%, vs. a 5-year survival rate of 74.9% for those diagnosed between 1975 and 1979 - this is a very significant 15 point improvement. For those diagnosed in 1996, the 10-year survival rate was 80.9%, vs. a 10-year survival rate of 63% for those diagnosed between 1975 and 1979 - a 17.9 point improvement. Based on these improvements, one could speculate that the 20 year survival rate for those diagnosed in 2001 could be in the range of 70%, and for those diagnosed today, it likely will be even higher.

Another way to evaluate the breast cancer mortality data is to look at the number of deaths per year from breast cancer, per 100,000 women. In 1975, 31.45 women per 100k died from breast cancer. By 1989, this number had actually increased to 33.23.  Since then the number has been steadily declining. The most current data available is for 2006 and it shows that 23.45 women out of every 100K died that year of breast cancer. That is obviously still way too many deaths - 0 is the only acceptable number - but it is a reduction of almost 30% from the peak in 1989.

Here is the source of all this data.  The charts I used are on pages 6 and 13:  http://seer.cancer.gov/csr/1975_2006/results_merged/sect_04_breast.pdf

Kitchenwitch, as for the study that you linked, I'm confused by your confusion.  It is well understood that some DCIS is slow growing, not aggressive and possibly won't ever bcome invasive.  It is also understood that other cases of DCIS are very high risk to become invasive within a relatively short time.  The challenge for the medical community is to figure out how to identify which cases of DCIS fall into which camp so that appropriate treatment can be recommended for each of us, based on the risk level of our DCIS.  Currently doctors use size, grade and the presence of comedonecrosis as the key indicators of whether a case of DCIS needs to be treated aggressively or not, but that's a far from perfect approach, since some low grade DCIS does develop into IDC.  The doctor in this article appears to be looking at whether hormone therapy is a viable option for treating those cases of DCIS that are lower risk, rather than subjecting these patients to surgery.  I think it's great that someone is looking into this!  It doesn't mean however that a non-surgical approach will be appropriate for everyone with DCIS. And it certainly doesn't mean that DCIS, if left untreated, is not going to become invasive. Here are some quotes from this article that support that this doctor is not suggesting that this approach will work for all cases of DCIS:

• Hwang... is also investigating biological markers within DCIS tumors. These markers might prove useful to predict response to therapy, and to predict which types of DCIS might be associated with a greater risk for eventually developing invasive cancer.  This suggests to me that Dr. Hwang in no way thinks that a non-surgical approach will be appropriate for all cases of DCIS. This also suggests to me that Dr. Hwang recognizes that some cases of DCIS presents a higher risk than other cases, and at this point, we don't know which are which. 
• Hwang's research team aims to identify women with DCIS who can safely forgo surgery unless and until their DCIS worsens.  In other words, the non-surgical approach is not appropriate to try on everyone with DCIS; those who are candidates for this approach need to be identified.
• "I think it's really important to emphasize that none of this will go forward until physicians and patients are comfortable with the idea that treating DCIS is a way to prevent progression, rather than that DCIS is a disease that needs to be cured"  In other words, the objective of the non-surgical approach is to treat DCIS with drugs so that it never progesses to become invasive cancer.  This is different than "curing" DCIS, which is the objective of a surgical approach.  

To me, Dr. Hwang' approach makes sense.  DCIS, and in fact any breast cancer that is confined to the breast (even invasive cancer, if it has not moved beyond the breast), is harmless.  Breast cancer in the breast will not kill anyone.  Mortality comes into play only when breast cancer cells move outside of the breast to other organs of the body.  With DCIS, this can only happen if some DCIS cancer cells remain in the breast and progress to become invasive, and then if those invasive cancer cells move outside of the breast through the lymph nodes or vascular system.  Finding an approach that ensures (or greatly increases the odds) that DCIS cancer cells will always remain contained within the breast is a great way to treat DCIS.  I hope that Dr. Hwang is successful!

How terrified should you be, day to day, for the rest of your life?

If you are asking specifically related to your current diagnosis of BC, the answer is "Not terrified at all".

Here's why:  The average woman walking the streets has about a 12.5% chance of getting breast cancer during her lifetime (to age 90).  You've now been diagnosed with DCIS.  Assuming that your DCIS is removed with good surgical margins, and particularly if you follow up with radiation and/or Tamoxifen, in all likelihood your risk of recurrence from this bout of BC will be lower than 12.5%, possibly quite a bit lower.  In other words, your recurrence risk will probably be lower than the BC risk you had before all this, when you probably didn't worry about it much at all.  So if you could live comfortably before you faced this diagnosis, you should be able to live comfortably now. 

Here's another reason why you shouldn't be terrified at all.  Women who have invasive cancer face the fact that if a single stray cancer cell escaped from their breast before their cancer was removed during surgery, that cell might be sitting dormant somewhere in their body and in 5 years, or 10 years or 15 years, it might start to grow again, in the bones or in the liver or somewhere else that will be fatal.  With DCIS, you don't have that risk.  DCIS cancer cells cannot escape the breast.  So if all your cancer cells are effectively removed during surgery and/or killed of with radiation and/or Tamoxifen post-surgery, then you have no risk of mets.  Your odds of survival are 100%.  This is the most significant way that DCIS is different from invasive cancer, and it is very significant.  And it's the reason why you don't need to be terrified.

Of course, the contingency here is that you must properly treat your DCIS, so that it is all removed and/or killed off.  And you need to continue to be monitored so that if any cancer cells do remain, they are caught and removed before they have a chance to progress to become invasive.  This means that you need to remain aware and you need to be diligent in your follow-up, but there is no reason to be terrified.

Having said all that, the other thing to consider is your risk to get a new BC, a totally new unrelated diagnosis.  Once any of us have been diagnosed one time, our risk to get BC again goes up.  So chances are that your risk to get a new BC at some point in your life is higher than 12.5%, but how much higher depends on lots of factors including your age, your personal health history, your family health history and, of course, whether you take a treatment like Tamoxifen.  Only an oncologist can tell you what your specific risk is.  For most of us, it ends up being higher than the 12.5%, but the way I see it, even with a risk of 20% (that's my current risk level), it still means that I have an 80% chance of never having to deal with BC again.  I can live with that.

As for feeling terrified, of course you do.  You just were diagnosed with breast cancer and you haven't been treated yet.  It's natural to feel terrified and to be confused about the future.  But understand that this will fade with time, although it may take a while - a diagnosis of breast cancer, whatever the stage, is a life changing event.  For me it took about 2 1/2 years before my fears got back to my pre-diagnosis level, but gradually they did.  When I go for a mammo today (on my remaining breast), I don't worry any more than I did before BC.  In fact, I worry less, because I've been through it and I know what to expect. 

Lastly, as for what's in the news about DCIS and the future of treatment, please understand that treatment will change and advance for all types of cancer, and all diseases.  Today the best approach doctors have is to remove the DCIS.  Some doctors, and patients, are testing other approaches, but the "standard of care" today is surgical removal.  Might that change in the future?  Hopefully yes!  But treatment options for invasive cancer will change too; over time chemo will be more targetted and probably given to fewer women.  New treatments with fewer side effects will be developed. The fact is that for all of us, whatever our stage, we have to accept the times in which we live and base our treatments on the best medical knowledge that is available today (as lacking as it may be). The future holds promise but there's no point in lamenting the fact that we live now and not in the future because that's one thing we can't do anything about. 

Beesie: Thank you for all the wise advice and great info (which I'm still absorbing and trying to understand). I appreciate the advice about not living in terror, so I"ll definitely make an effort not to go there. (I'm finding the xanax relatively helpful.) I guess a big part of my problem is the number of medical problems my family has faced, from my mother's descent into misery with kidney and high blood pressure issues, to my son's extreme prematurity, coupled with a really horrible year (husband now unemployed, my colon stuff, I could go on and on and on). This just seemed like the last straw. I do appreciate all your research - I do some, but I don't understand it as well as you!

 Louishenry: thanks for your kind words. This has just been a really miserable time for me and I guess the anxiety from everything is becoming somewhat unmanageable. I don't think I can take the tamoxifen - I have a predisposition to a clotting disorder, and I hear that stroke could be a real issue, ack. I'll let an oncologist help me get this sorted out. Best wishes!

Nah, Beesie, don't break the habit!  We love you too much to lose you!

Arnie2two - It doesn't seem that your diagnosis is DCIS.  DCIS is, by definition, contained within the mik ducts and noninvasive.  Ladies with DCIS are considered stage 0, wouldn't have positive nodes and don't get chemo.  While I wish I could be more helpful, the best I can offer is to post your question on the Stage II board.

If I'm misunderstanding something about your situation, please let me know. 

Beesie,

You can't "leave" - your knowledge is immeasureable!!!  That's why Mom2two started this thread and I keep bumping it!  

Hugs,

Trish

Thank you, Beesie, and everyone... this thread has been very helpful for me as I try to make seemingly-impossible decisions.  I've already had a lumpectomy + re-excision, for a 1cm mucinous tumor and an area of intermediate-grade DCIS that appeared (on the MRI/mammo) to be 3mm but was actually almost 3cm.  My margins at the re-excision were technically negative, but so close, due to the surprise of the additional DCIS, that I need another re-excision at the very least (followed by radiation), OR a mastectomy.  My surgeon has told me that EITHER choice is valid... on the one hand, it's troubling that there was so much DCIS that imaging was unable to detect, and that could be reason for mastectomy....and I'd be happy to avoid radiation.  On the other hand, I'm only 31 and I do love my breasts, and my surgeon worries that if I choose mastectomy and no further cancer is found in either breast, I'll regret having chosen mastectomy.

I am REALLY torn.  I can see both sides.  My DCIS was "intermediate grade" - which makes it even more difficult; there's no way to know if it would have been likely to become invasive cancer, or not.  My surgeon "suspects there is no more cancer" in my breast, but really, WHO'S TO KNOW??  There's been over 2cm of it already that MRI/mammo/ultrasound didn't detect.  It was only discovered AFTER surgery, in the pathology lab.  So do I TRUST & HOPE that there's no more DCIS (or other cancer) lurking undetected, and go for the re-excision + rads, hoping for no rads side effects... or just get my breasts removed NOW, so I no longer lie awake at night wondering what undetectable cancer is in there, and hope I don't develop Post Mastectomy Pain Syndrome??

DCIS is so sneaky.  It worries me almost more than the actual invasive tumor I had, because that tumor is good and gone.  DCIS may or may NOT be gone. 

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