Stanford long-term DCIS study

From the article:

"Breast cancer deaths were about the same for all treatment groups. But among women who had only a lumpectomy, 19 percent had a recurrence of invasive breast cancer over the next 15 years, compared with 9 percent of women who had a lumpectomy plus radiation, and 8.5 percent of women who had the lumpectomy plus radiation and tamoxifen."

"Breast cancer experts said the study should be reassuring to women who are diagnosed with early breast cancer, in the sense that their long-term outlook is very good with all three treatments.

But some patient advocates say that regardless of the type of treatment a woman receives for early breast cancer, her chances of dying from invasive breast cancer later on are very small. Only about 5 percent of women who were studied died of breast cancer, suggesting that such early cancers are being overtreated."

Are you fv@#!^g kidding me?  Of women who were treated, only 5% died, so maybe we are overtreating these types of early cancers?  And maybe "Some women diagnosed with DCIS may be better off just leaving it alone and monitoring it with regular mammography"?  Yes, then they all can get invasive cancer and 25% can die!  Would that be better?  Are these people insane?

Separate from those outrageous comments, what concerns me about this study are the numbers themselves.  The percent of women who had an invasive recurrence is about double what I've seen in previous studies (some of which were very large - much much larger than this one) and the percent of women who died of breast cancer is also much higher than the 1% - 2% that almost all other studies show.

It will be interesting to hear more about this study.  

I know what you mean, Sweatyspice!  As I read the article, 35% of women who have lumpectomy only have a recurrance within 15 years (jncluding DCIS and invasive cancer).  Wow.  1/3?  I'm actually interested in reading the study (if I can understand it) because I have a feeling the article is not accurately reporting its findings.

I also note that (a) I am planning to live more than 15 years (I am only 42) and (b) I'd prefer not to have to go through treatment for invasive cancer (or DCIS, for that matter), even if successful, so I care about recurrences within that time period, even if the patients survive the entire 15 years! 

sleuth, all DCIS is not alike.  For someone who has a small single focus of low grade DCIS, perhaps it's possible to leave it alone and continue to monitor with screenings.  But for someone who has a large amount of DCIS and/or multi-focal DCIS and/or high grade DCIS with comedonecrosis, the risks are substantially higher.  Most reliable sources will admit that most if not all of this type of DCIS can be expected to become invasive over time.  And until the area of suspicion is removed, there is actually no way to know if the cancer is in fact only DCIS or if some invasion has already started (as in my case and many many others). 

I've been doing my research on DCIS for 5+ years, since I was diagnosed.  I've read nothing that comes even close to convincing me that DCIS is not breast cancer - the most accurate description of DCIS is that it's pre-invasive cancer.  And I've read nothing that suggests that a non-surgical approach is safe for the majority of women diagnosed with DCIS.  

Plus, considering the rates of recurrence (or second primary cancer) with lumpectomy alone, I'd hate to see how many women would end up with invasive cancer if they didn't have a lumpectomy!

Sleuth,

My original dx was DCIS.  Then DCIS w/ microinvasion which my BS kept saying were nothing to worry about.  During my bi-lat mx, it turns out  my lymph nodes were involved as well, and I'm actually stage II.  I know that my DCIS was the beginning of this process, and anyone that even thinks of just leaving it alone - should rethink that decision and get treatment!  Had I gotten screening mammograms and been dx'd years ago, instead of waiting until I had pain and this huge mass that I could feel, I may have ONLY been treating DCIS and no invasive component, instead of extensive grade 3 DCIS throughout my entire breast plus stage II IDC.   

I think studies like this are important.  Until they figure out what cases of DCIS need to be treated and what cases do not, everyone dx with DCIS will be treated agressively. As the article suggests treaments have risks.  

My initial dx was DCIS.  As another two invasive cancers were found in the same breast, I had a bmx.  Bad enough to have it because of invasive cancer, but it would have been truly awful to have had it for something that was very unlikely to kill me.  If I only had DCIS and I could have gotten good statistics on the chance that it would lead to an invasive cancer, believe me when I say I would have gone for close monitoring - ie watchful waiing.

Finally, mikita5, there is a hugh difference between leaving DCIS alone and close monitoring.  If only we could determine what are the characteristics of DCIS that could be monitored closely or removed surgically without further treatment.  

sleuth, the source of your expertise on DCIS is a Ladies Home Journal article?  I'm impressed.

I am very familiar with everything that's stated in that article. Read it all before. Articles such as that one that simply skim the surface of explaining DCIS do a disservice to everyone diagnosed with DCIS. I know that there are some experts - Dr. Love being one of them - who downplay DCIS, call it a pre-cancer and make statements to the effect that only a small percentage of DCIS will ever become invasive. Most experts do not agree with Dr. Love. And the known facts about DCIS don't support Dr. Love.   

Here's one fact: Of all women diagnosed with DCIS via a needle biopsy, 15% - 20% are found to have invasive cancer (either a microinvasion or more) once the actual surgery is done. If we followed your suggestion, the DCIS - and the invasive cancer accompanying it - would be left in the breast and allowed to continue to grow and spread   "...up to 20% of the lesions diagnosed as DCIS by SCNB show foci of invasion on histopathological examination after surgical resection of these lesions"  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC419375/ 

Here's another one:  Even when the area of DCIS is surgically removed (and often, treated with radiation), if there is a recurrence, in 50% of cases the recurrence is not found until the cancer has already progressed to become invasive (there are a multitude of studies that confirm this). So if residual cells of DCIS remaining after surgery & treatment have such a high propensity to become invasive, how in the world can anyone believe that overall only 30% of DCIS will ever become invasive if none of it is removed or treated?

sleuth, your diagnosis is not DCIS.  How you've chosen to treat your diagnosis is your own business. How you feel about chemo is your own business. This is the DCIS forum. Please show a little respect to the women here who have DCIS and don't come here telling us how to treat our cancer, which you clearly know very little about.   

lisa-e, I agree with you.  We need to know more about the characteristics of DCIS so that we can separate those cases that truly are low risk from those that are high risk. Medical scientists are working on this, but they don't have the answer yet.  I hope in the future that DCIS can be divided into two diseases, one that is truly a pre-cancer, with a <20% risk of ever becoming invasive, and one that is Stage 0 pre-invasive cancer - a true cancer that's happens to have been caught early enough that it hasn't yet become invasive. Until we know which cases of DCIS are which, we must treat them all as if they are in the 2nd category. That's unfortunate because it does mean that some women are overtreated.  Undertreatment however would be worse, because for some women, it could be fatal.  

If someone is able to access or post this entire report, I'd be very interested in reading it. Please let us know, ok?

to thse who want a 'watch and wait' for DCIS....how exactly would that work?  My dh and I wanted that approach but my bs said there was no way to moniter it.  None of the imaging we have today is perfect.  Of all the DCIS found in my breast only 1cm showed (only on MRI).  I'm very thnkful it wasn't IDC but why would I wait for it to turn???  I HATE that I needed  a mast to get rid of it but it had to go.

Sleuth, why are you even posting over here.  Tryin to str up trouble?

Namaste!

slueth: You made the best decision you could for yourself given the information you choose to believe.  It is only the same for everyone on this forum.  All of us, deserve to have our personal choices for treatment respected.  Every choice comes with its consequences and each individual chooses which ones they are willing to risk based on their individual situation with health, family, resources, beliefs.  I think it is wonderful that we all have this freedom of choice in the very basic act of controlling what happens to our individual bodies.

Karla

lisa-e: " I tend to think that at some point, researchers will be discover which cases of DCIS are potentially dangerous and which are not."

I think you're exactly right about that. In some ways, DCIS is a warning sign. If DCIS occurred on our skin, docs could watch it and see what was going on. But since it's inside the body, and because screening methods are expensive, imperfect, and pose certain risks themselves, it's not possible to keep a close eye on it.   

Thanks for posting this article. I was diagnosed with DCIS Jan 2010 (stage 0, 2mm, intermediate grade), had two biopsies (which did not result in clear margin). I did a major detox/nutrition program with an orthomolecular nutritionist/energy healer and within a month my MRI & Thermogram were clear. I refused lumpectomy and radiation because they could not find anything. I chose to wait and watch. 8 months later, my mammogram and ultrasound were clear. please visit my facebook group if you are interested in learning more about my experience: Do a search for Donna's Choice: Global Healing From The Inside Out. Ultimately, we have todo what feels right for us...every case is individual. Do your research. Talk with a naturopathic Dr if that feels right and listen to your gut!

I feel justified in weighing in here. I was dx in 1994 with DCIS and LCIS, had a lumpectomy and did nothing for 17 years. Nothing showed up on mammograms and nothing on MRI 3 yrs ago. I posted when I felt full of myself and denied DCIS need not be treated. I now have IDC and am facing a mastectomy. It seems to eventually break out, but possibly not in all cases. I understand waiting and watching, just be prepared (mentally) when it does break out. Could be 6 months or could be 17 yrs. like my situation. My husband wants me around for his retirement in 2 yrs. so I agreed to do the MX. I often wonder how slow this IDC would grow if I let it. I gambled back in 1994, don't feel like gambling again.

Thank you mom. I had a lumpectomy but had dirty margins. My surgeon and oncologist in St. Louis strongly urged a bilatMX. I just was not hearing it and found a very good surgeon in Chicago who said "let's watch it." Yes, I had my breast for 17 more years. I was 37 at the time and I'm so grateful for that.

Eloise--