DCIS 0 controversies making me nutty

Kittenpaws--You are right to thoroughly investigate this.  Your situation is not so straightforward.  Are you getting the actual treatment at Dana Farber, or just the consults?

You seem to be at minimal risk waiting to decide on the rads, given the very clean margins (squeaky clean!). 

The Oncotype test might make sense in your case.  Just beware that not all doctors buy into using it with DCIS patients.   My surgeon doesn't use it, although my case was more clear-cut toward doing rads.  Ask the surgeon about the necrosis issue in your case.  Does that up the risks of recurrence, even if you had a small amount of dcis and it was low grade? 

About whether we should all do lock-step decisions about these treatments, I'd say no.  I'm still dithering about the endocrine therapy.  I met with a medical oncologist twice and I am going to speak with my surgeon at the follow-up this month.

kittenpaws, I would read about the damage that radiation does to the lungs and how it affects the heart before making your final choice. Something to think about. Ionizing radiation can cause heart attacks and lead to vascular problems unrelated to the BC. No, I don't have any experience with radiation myself since I am waiting for biopsy results myself. I am also questioning the recommendations of doctors for the standard treatments for BC being related to avoidence of a future lawsuit. In fact, I have read that all these recommendations for biopsies by radiologists for suspicious masses could be related to profit potential since they keep the fees. When I found out that 80% of all biopsies are benign, how come all these biopsies in the first place? Makes one wonder if the benign lump was ever suspicious. Lets face it, a fear of breast cancer will make women run to have any and all of these procedures/treatments done no matter what. Money could be behind all of it.

smillsbc-

It appears that you are extremely concerned with trusting your doctors, the radiologist who read your report, radiation oncologists, etc. I've come to that conclusion after reading your posts on a few threads about your research your response to those that present a balanced and more evidence based case for an opposing viewpoint, and your somewhat alarmist conspiracy theories considering radiologists and radiation oncology.



We all come to this with our own biases. And seeking information is a good thing. A bit of healthy skepticism can keep us from making rash decisions or falling for modern day snake oil salesmen in many areas of our lives. I just think it might help you a bit to consider the positives that are associated with early detection, minor invasive biopsies, and therapies that are effective and have been researched through multiple, medical trials. There are reputable doctors, surgeons, oncologists, and technicians whose interest in wanting the best for their patients and family is what propelled them into their field of medicine and keeps them there.



Hope you are able to find some peace in your search for answers.

I am right there with ya'. I am almost in the exact situation and have very similar feelings. To me,  it feels like every treatment suggested is overtreatment. It's nice to read posts and articles that validate my thoughts while in this "fuzzy dx category".

Peace,

Wendy

Recurrance rate differences are interesting.    My DCIS was grade 2, but with comedo necrosis and a microinvasion, and was very small (removed entirely during the biopsy).   Nonetheless, the MSK nomogram gave me a 23% recurrence rate over 10 years, and my RO estimated 30% (although he didn't tell me the exact time frame he was thinking).   I do have a family history though (and am 45).  Either way, it was high enough for me to be ok with rads and with trying Tamoxifen.    I had no lasting problems with rads (just some swelling and fatigue that abated after treatment) and so far after 6 weeks on Tamoxifen seem to be tolerating it fine as well.   The decision on that had been try it and see - if I had had a lot of trouble with it, I might not have chosen to continue, but so far so good.

I have the same question CTMom has...20% recurrence? I dont understand why it is that high either. My sister in law had DCIS too. She opted for the mammosite radiation treatment which is 2x a day for a week. She also took Tamoxifen for 5 years. She just passed the 5 year mark. She said the radiation treatment was not bad at all but Tamoxifen was tough to deal with...hot flashes, weight gain, anxiety, lack of concentration....I have IDC Stage 2(micromet in SN), Grade 1. I had a lumpectomy and 33 RADS treatments. They werent bad at all either. I did however have the Oncotype test too. My score came back 11 with an 8% chance of recurrence IF I took tamoxifen or arimidex or whatever med my ONC decided I should take. Had I not had the test done I would probably would have had chemo. There is a lot of press about overtreatment of bc patients not the least of which is ones with your DX. My sister in law said she was okay with doing the lumpectomy and mammosite. She yielded to her ONC who coincidentially is mine as well. It is a crap shoot. There are SEs from pretty much anything you decide to do as far as surgeries and treatments. You are doing the smart thing by doing your homework. Just because a DR thinks it is the best plan for you doesnt mean you have to accept it because he says so...after all it is your life. Of course they are the experts but they are not you. I have to admit I was afraid not to. Being DX to begin with no matter what stage you end up being knocks you for a loop so I decided no matter what I would throw everything at it. We all know there are no guarantees so we just make the best decisions we can for ourselves and I am sure you will too. Good luck and keep us posted. diane

Ballet - no, the 23% was with just lumpectomy.   Rads took it to 9%, and tamoxifen to 5%.  Sorry for the confusion!

Clearly, recurrences do occur after rads, or the recurrence rate for lumpectomy plus rads would be 0 percent.  I didn't ask my radiation oncologist about what the recurrence rates are at my hospital or her personal experience with those patients, but it's a tertiary care facility (NCI-designated cancer center).  It is the kind of place that would be treating those with recurrences or complex cases. I wish that we could have "tailor-made" information on our own recurrence rates, but it's just not possible.  We can only use those general statistics quoted earlier in this thread:  20 percent recurrence post lumpectomy, 10 percent recurrence post rads, etc., or some guestimate based on parameters that our physicians know about us.

 After I was done with the rads, the radiation oncologist felt pretty confident that she had substantially reduced the recurrence risk on the treated side.  She thought I should do hormonal therapy, not because of recurrence risk concerns on that side, but because of possible occurence risk with the other breast (family history, etc.)

Beesie nailed it. I have a family history - my mother had bc in her late 60's and now my sister and I both have it. My ONC told me that 70% of the bc cases are not high risk cases - family history for one yet whenever I tell them my mother had bc the red light goes on. I have IDC Stage 2, Grade 1. I have routine mammograms and that is where they found it. I don't get too confident about all these stats because there are always cases that can disprove those stats; however, I do feel slightly optimistic that if I have to have it it was caught early and it is early stage other than that it is truly a crap shoot as to whether it recurs or not. diane

ballet, I was referring to Kittenpaws' (I smile whenever I type that name!) comment, saying that "Both my surgeon and medical oncologist have said a 20% risk of recurrence.  Maybe they are factoring the small family history factor into it already?"  Family history should not be factored into recurrence risk, only into new occurance risk. 

A comment about the MSK DCIS nonogram. I realize that not all doctors agree with Dr. Lagios about the significance of surgical margins, but there is no question that to at least some degree, surgical margins are relevant and should be factored into a recurrence estimate. Same thing too with tumor size, although perhaps to a lesser degree. I know that the MSK nonogram asks whether margins were negative, positive or close, and I know that it uses "number of surgical excisions" as a way to gauge whether the area of DCIS was small or large.  But I simply don't think that's precise enough.  Someone who had a 0.7mm tumor and had a single excision that resulted in +1cm margins will likely answer those two questions exactly the same as someone who had a 3cm tumor and had a single excision that resulted in 0.3mm margins (0.3mm is considered to be an 'acceptable' margin so a patient or even a doctor might not classify it as being a close margin).  Yet there is a huge difference between those two situations and I would venture to guess that the recurrence risk would be very different.  Yet if all other factors were the same (age of patient, grade of tumor, etc.) these two patients would get the same recurrence risk calculations from the MSK nonogram. I'm not a doctor and I'm certainly not an expert on this stuff, but that just doesn't seem logical - or correct - to me.