DCIS 0 controversies making me nutty

Kittenpaws, 

Parents and siblings are the only relatives that count as being 1st degree. Grandparents and aunts/uncles are 2nd degree.  So that would make a cousin a 3rd degree relative.

Yes, rads will reduce the recurrence risk from your current diagnosis by approx. 50% but it won't do anything to reduce your future risk of a new primary diagnosis. Tamoxifen will provide a risk reduction benefit in both areas.  One thing to keep in mind, however.  Based on the latest research, if you take Tamoxifen for 5 years, it will benefit you for about 8 or 9 years. If you take Tamoxifen for 10 years, it will benefit you for about 13 or 14 years.  Most recurrences happen within the first 10 years (although not all; a small recurrence risk remains even after 10 years).  So if from your current diagnosis you have a recurrence risk of 20% and Tamoxifen provides a 45% risk reduction, this means that 10 years of Tamox will likely reduce your recurrence risk from 20% to about 12%.  I calculated this by assuming that you will face ~90% of your 20% recurrence risk (i.e. 18%) over the next 13 - 14 years, and that Tamox. will reduce this risk by 45%.

However if you have a 25% lifetime risk to be diagnosed again (I pulled the 25% out of the air but based on what my oncologist told me about my lifetime risk after my diagnosis, 25% might be in the ballpark for you), that risk is spread over the rest of your life - over 50 years. Your greatest risk doesn't kick in until your are in your 60s.  So it's possible that over the next 13 - 14 years, your risk might only be in the range of 5% - 7%.  A 45% reduction of a 5% - 7% risk is only a benefit of 2% - 3% (I'm rounding numbers here). So this means that 10 years of Tamox. might only reduce your lifetime risk to be diagnosed again from 25% to 22%. That's how my oncologist explained it to me, and that was why he actually recommended that I not take Tamoxifen - although he said that it might make more sense for me as I got older and I was in my higher risk years.  I was 49 at time of diagnosis. Your situation might be different because you are younger - so perhaps your risk is higher over the next 10 years - but this is certainly something that you should discuss with your oncologist.

As for your margins, because no cancer was found during your surgery, it means that the entire area of breast tissue removed was a clear margin. If we assume (hopefully a fair assumption) that your surgeon removed a small ball of breast tissue completely surrounding the area where the cancer was found (i.e. the original location of the cancer found during the biopsy was right in the middle breast tissue removed during surgery), then mathematically your margins would be 1/2 of the diameter of the removed breast tissue.  Or in other words, if the surgeon removed approx. a 2cm circle of breast tissue (just making up the 2cm size - your pathology report should say how large the area of removed tissue was), it would mean that your margins all around were 1cm.

Does that make sense? 

The MSK nomogram is not perfect.  It's only a ballpark estimate.  It does kind of equate size of lesion with number of lumpectomies required to achieve clean margins.  I think the size of lesion thing with DCIS is also tricky to assess, because the lesion is not always continuous (can be multifocal and/or multicentric and with non-pathological areas around or between the pathological areas).  Beesie, as you have stated regarding your situation, the DCIS was scattered throughout the breast.  We can guestimate based on how much tissue was taken out, but it's still not too precise.  Maybe that's why the MSK nomogram doesn't ask for size of lesion. Also, it's quite likely that areas of DCIS don't show up on imaging (much of mine didn't), and if it was multifocal, there could have been areas distant from the excised area.  So who knows how much was there.

I also agree that number of excisions can be misleading.  In my case, the first surgery was really an excisional biopsy (like yours, due to previous dx of ADH), so they weren't trying to get "clean margins."  I do believe that I would have still had more than one surgery, because the calcs didn't represent all that was there.  Also, surgical techniques and choice about how much clean margin to have, are both idiosyncratic to the surgeon and patient.  Some surgeons and/or patients request very wide margins (or request to go back and get wider margins).  I think Dr. Lagios sometimes tells people to go back and get wider margins.  If I remember, I'll ask my surgeon (author of the nomogram) about why the nomogram does not ask for size of lesion as one of the parameters. That is, if I remember.  I will be focusing on other issues when there.

I think it's really important to emphasize that every diagnosis is different and treatment decisions need to be made with consideration to the specifics of the individual case.  

kittenpaws, in your case although we can debate the recurrence risk numbers, I think most if not all doctors would say that a 7mm area of grade 1 DCIS with wide margins is a favorable diagnosis/pathology and almost certainly has lower than average recurrence risk. 

thora, I'd venture to guess that most doctors would say that 1mm margins on a 2.5cm area of grade 2 DCIS presents a much greater risk. In fact most doctors would not consider 1mm margins to be clear - usually at least 2mm if not 3mm is recommended as the minimum, particularly for DCIS (vs. invasive cancer) because DCIS has a tendancy to 'skip' within the duct, sometimes leaving small clear areas before starting up again.  You say that "I will be active when there is evidence of invasion."  How will you know? I'm not aware of any screening method that is capable of showing the difference between pure DCIS and DCIS that has started to evolve to become invasive cancer. I truly do appreciate your desire to pass on rads and Tamoxifen and of course that's your decision to make, but in doing so, have you talked to your doctors about what your recurrence risk might be?  

Kittenpaws

The good news about DCIS is that you have choices; the hard news about DCIS is that you have choices.  Do you have the time to schedule a follow up consult with your surgeon, radiation oncologist or medical oncologist to go through all of your questions one by one, and also the ability to bring a friend with you to help take notes?  I found it really helpful to write as many questions as I could think of down in advance and then to have someone with me who could do nothing but listen.  For me, it was very hard to process everything the doctors would tell me when I was in the moment, and invariably I would forget the answer to something they said or explained.  It can be an emotional time and sometimes it is hard to process information on risk and science and path reports in the moment; my left brain and my right brain couldn't always work in tandem. 

FWIW, I chose lumpectomy + radiation and will start Tamoxifen (5 years not 10 - and I did ask about 10)  soon.  It was my choice and while it is too early to tell, I feel good about my decision.  My personal experience with radiation was pretty good.  I was eligible for something called the Canadian protocol (which I chose) and used a breathing technique to minimize the risk of damage to my heart.  My lungs feel just fine.  Again though, that was just my personal experience.  Others have different experiences.  Bear in mind that many people move off of these boards once they start feeling better, so it will be hard to get a holistic sense of  people's individual experiences over the long term because of that.  

Good luck with your decision. 

Kittenpaws,

I noticed in one of your posts that your oncologists thought Dr. Silvestein's and Dr. Lagios' Van Nuys Prognostic Index had not been validated. I disagree. Below are two of the studies that have validated it.

Several studies have validated the use of the VNPI. In a study in 2008 in the World Journal of Surgical Oncology Dr. Onur Gilead verified that “the VNPI is a statistically significant determinant of local recurrence when local excision is the only treatment modality applied.” The VNPI was also validated in a study published in 2009 in the Journal of Clinical Oncology by Dr. Lorie Hughes. She concludes: “Rigorously evaluated and selected patients with low-to-intermediate grade DCIS with margins 3 mm or wider had an acceptably low rate of ipsilateral breast events at 5 years after excision without irradiation.” In fact, according to Dr. Mel Silverstein et al et al, “There was also no statistically significant benefit from postoperative radiation therapy among patients with margin widths of 1 to <10mm.”

In addition to that, Dr. Lagios credentials are impressive. He has bee studying DCIS for the last 30 years and is one of the true experts in the field. If you are not comfortable with having radiation, he would be the doctor you should talk to. He is very impartial and will tell you that you need a reexcision or radiation if that is what your pathology and imaging shows. After he reviews your pathology, he sends YOU his report and then his office arranges a 45 minute phone consult with him, during which you can ask him any question you like re tamoxifen, radiation or whatever.

After I was diagnosed with DCIS in 2007, he was a life saver for me. It was so reassuring to hear from a true DCIS expert that my risk of recurrence was only 4 percent. It gave me the courage to say no to both radiation and tamoxifen. Now 6 years later I am living a very full and active life.

Please feel free to send me a PM if you like or read more of my story on my wesbite: http://dciswithoutrads.com/

Remember you don't need to rush this, as DCIS is non-invasive. Take your time and make sure that whatever you decide is something you can be at peace with.

Wishing you all the best,

Sandie

Here's the word from the medical expert on this site about biopsies and the risk that they may cause cancer to spread:  What My Patients Are Asking: Can Getting a Biopsy Spread the Cancer?

You say you've had a biopsy.  Do you have the results and have you been diagnosed with breast cancer?  And if so, is it DCIS (this is the DCIS forum so I'm assuming that).  DCIS is cancer that has been caught at the pre-invasive state.  A biopsy or even the movement of a DCIS cell into open breast tissue (from the milk duct, which is where DCIS is found) will not turn DCIS into invasive cancer.  A biological change needs to take place within the cell structure in order for DCIS to become invasive.  So there is no risk from the biopsy.

Kitten paws, what did you decide to do? I tried to read all the posts but could not see if you actually got an opinion from Dr. Lagious. I think this have resolved your concerns. He would not say you need no further treatment unless you fell into the category. Your being so young is a concern.



A short time ago there was a female doctor on NPR who was diagnosed with low grade cancer and she is rebelling too. She did state that the fear of lawsuits makes doctors stick with the standard of care no matter what.