DCIS Treatment Confusion

You have one spot of DCIS that is 3mm in size and clear margins after a lumpectomy, and both your radiologist and oncologist are suggesting that you have a mastectomy?  Seriously?

What is the grade of your DCIS?

There is a lot of debate these days about whether DCIS is over-diagnosed and over-treated.  There is also debate as to whether DCIS should be considered a cancer or pre-cancer.  The problem for the medical community in coming to any agreement about this is that DCIS is a heterogeneous disease - it can range from just a few millimeters of low grade DCIS to a breast completely full of very aggressive high grade disease. Obviously, the way this first diagnosis of DCIS should be treated is different from how that second diagnosis of DCIS should be treated.  Unfortunately right now the treatment standards don't make these distinctions and I think that may be what you've come up against with your doctors.

There may be more to your diagnosis that I don't understand, but from what you've described, it appears that you may have a diagnosis that at some point in the future might fall on the "pre-cancer" side of the line.  Your doctors however seem to be recommending the full treatment regimen, which might be considered by other doctors to be over-treatment for your specific diagnosis.  It's good that you are getting a second opinion from Dr. Lagios.  He will openly say when he thinks rads aren't necessary, but I've also seen lots of situations where he has come down strongly in favor of rads or even a mastectomy. So he while he certainly tries to avoid over-treatment, he's not looking to under-treat any DCIS patient either.

Please let us know what Dr. Lagios says.  As for delaying rads, I'm sure that someone will come by soon who's done this.  Personally I don't think that a short delay while you get a second opinion should be any problem.

ww - In the world of DCIS you have a teenty-tiny spot.  Ten years ago I was found to have DCIS just a little bit bigger than yours.  I had second and third opinons and the general agreement was don't do rads. The only one who said I should have rads was the radiation oncologist.  Even though all of them told me mastectomy was an option they all (especially my surgeon) also thought I would be nuts to have a mastectomy for the amount of DCIS I had.  My oncologist did not recommend tamoxifen, she said in my case the risks outweigh the benefits.  In the end I did nothing, no rads, no tamoxifen, no mastectomy, and I haven't had any more problems on that side.  I am now having problems in the other side.  So at this point rads wouldn't have made any difference but tamoxifen may have.  (It's still up in the air what is going on in my other side.)  I also have a friend who was diagnosed with DCIS about 25 years ago, she did not have rads or tamox and has had no problems or recurrences.

A couple things you have to look at other than the size of the DCIS are 1) the size of the margins - makes a difference if thay are 1 mm or 1 cm 2) grade and 3) your age.  Rads does not come without its own set of side effects so it isn't something to be taken lightly.  I'm glad you are having Lagois take a look at things and I'll be interested in knowing what he says.  I'd also suggest you get a 2nd opinion locally if you can.  It will help to have someone who is in agreement with what you are doing on your side for follow up care. 

My situation is NOT identical to yours (never had any discharge or really any ‘symptoms’ of breast trouble at all), however I will share my DCIS 'story' as well.  I had my diagnosis of DCIS back in 2008 -- left breast -- after a digital mamm which showed a cluster of microcalcifications followed by a lumpectomy/surgical excision.  Mine was a very small focus area of DCIS (1.6 mm) with nothing identified as comedo (path report indicated solid & cribriform) NO necrosis present, considered intermediate grade, and I had clear margins after the surgical excision/lumpectomy.  I have not had any additional treatment besides my excisional biopsy in July '08 which got that tiny area of DCIS out.  At follow up appt. a week after that biopsy, a medical oncologist spoke with me and told me that my tumor was so tiny he thought there was a miniscule chance it would cause me problems down the road and he did not recommend radiation therapy or hormonal therapy with their associated risks and side effects for my particular situation.  He actually told me I was not to lose sleep over this or worry about it and he never expected to see me again.   I also met with a radiation oncologist who wavered a bit on his recommendation, (seems I was sort of in a 'gray' area on rad treatments mainly because of my age at that time - 46 - and one margin although clear was quite 'close' at 1.3 mm) but ultimately told me after we had a long discussion that I get a 'pass'.  Therefore, I decided against doing anything more except for close monitoring with mammograms and MRI's as needed.

I have had two additional biopsies since the initial diagnosis of that tiny area of DCIS.  In summer of 2011 microcalc’s were again found in that same left breast and I endured another excisional biopsy which indicated all benign conditions.  In July 2012 a small grouping of microcalc’s (less than ten) were again showing up in left breast on mamm and I had a stereotactic biopsy to remove the majority of them which also came back benign.  They put a ‘marker’ in at the time of stereo biopsy and I have had two follow up mamm’s (Jan 2013 & July 2013) since then which have showed no changes and thankfully ‘stable’ in that area.  I do continue to say on the ‘six month’ schedule of checking the left breast.  So, while I don’t feel I am that far out from the initial DCIS diagnosis and have had to endure additional (thankfully benign) biopsies, so far so good even though I chose not to have radiation.   That’s my story at this point.

ww3354 - do keep us updated on your second opinion.

I'm in the UK so things are a bit different, in as much as our healthcare is free (well we pay for it in taxes etc).

Having said that we are seen by the same Consultants as private patients etc, we just have to wait longer for the appointment - but the level of care and expertise is the same.

Under the NHS we tend to end up doing as we're told .  

Although I saw a medical oncologist after my surgery it was just to be told that rads, in my case, of 1cm grade 2 DCIS with clear margins would be overkill.  There is alot in our news lately about over treatment.

Must admit to not breathing easily again until after the one year check when all was fine.  I am glad to still have the rads weapon up my sleeve for if anything more sinister recurs.

That's my story. xx

I have been advised by my primary md to seek a second opinion. I am pre- menopausal, larger than expected area when they did the lumpectomy so margin on one side is only 1 mm. No nodes were looked at. Currently in radiation treatment, will start tamoxifen afterwards. Her2 positive with high nuclear grade with necrosis along with my age is why she feels they may not be doing enough. Any experience or advice appreciated!

Does anyone have a recommendation for an oncologist who subscribes to the "lets wait and see" school of thought on DCIS?  We are looking for second and maybe third opinions on a recent diagnosis.  Pre cancer, stage 0, 6 cm lesions.  Los Angeles are.  Thank you!

SIB, did you say that it's a 6cm lesion?  Not 6mm?  6cm is big, and the larger the area of DCIS, the greater the risk that some invasive cancer might be hiding in the middle of all that DCIS - and there is absolutely no way that you would know that from the imaging (mammogram, ultrasound or MRI).  So unless the entire suspicious area is removed, there is no way to know if it really is just DCIS.

If it's 6mm and if it's grade 1 (grade is a very important factor here), then you may find a 2nd opinion doctor who is willing to wait and see. If it's 6cm, whatever the grade, I doubt that any doctor would agree to a wait and see approach.