DCIS - A 'runaway train' feeling.

Hi CeciliaAnn

My original diagnosis was DCIS with a grade 3 tumour 1.8cm in length and after discussion with my surgeon and onc it was decided I should have an 8 week course of radiation and then 6 rounds of chemo.  However 3 weeks later my diagnosis changed as the cancer has started to spread rapidly into the nodes in the supraclavicular area which put me at a stage 3 and I had to start chemo straight way, no time was wasted.

In my mind DCIS is a real cancer as it will probably spread at some point if not treated.  I had a lumpectomy (and glad I did) as mastectomy was not discussed and I did not contemplate it.

I understand every case and diagnosis varies greatly, but I would choose chemo over a mastectomy any day of the week.

Sarah

Sarahlou, if you were offered chemo based on your initial diagnosis, then you must have had some invasive cancer in addition to the DCIS. Chemo is not given for pure DCIS. It is very common to find DCIS and IDC together, but when that happens the diagnosis is considered to be IDC, not DCIS. The DCIS, as the lesser condition, needs to be removed but is otherwise incidental.  

It is also very important to point out for anyone reading that pure DCIS is fully contained within the ducts of the breast and cannot spread to the nodes or into the bloodstream.  DCIS left in the breast may continue to evolve and over time might develop to become invasive cancer; once invasive cancer, spread is of course possible.  But as DCIS, there is no risk of spread. 

CeciliaAnn, if you don't have the results yet from the second excision - and you don't know if the margins are clear - I don't understand why your surgeon is saying that you will need to have a mastectomy, particularly if you choose to have rads after your lumpectomy.  

Have you had an MRI?  An MRI might be helpful in assessing the likelihood that you might have more stuff going on in your breast that would necessitate a MX.  But if the MRI is clear, then I can't see why a MX would be medically indicated.

And have you seen or will you be seeing a medical oncologist?  A surgeon's job is to operate.  The MO is responsible for the total patient and the total treatment plan.  Getting another opinion from an MO might be very helpful in your case, given the gloomy outlook (for no obvious reason) of your surgeon.  Your diagnosis, while not the 'best case' DCIS diagnosis (small amount, single focus, low grade), doesn't sound to be particularly large or aggressive.

Beesie, you may as well give up in terms of the diagnosis of DCIS and the way people view it. I know that I have tried so many times to explain that DCIS is ALWAYS stage 0 and that chemo is never ever given for it but people just keep putting other stages in their diagnosis line and listing chemos. I have even seen DCIS Stage IV on some folks!! It is always alarming that newbies are going to read this, but I have finally made peace witht he fact that some folks will just never "get it." Hugs and thanks again for all you do and your tireless efforts to inform. xo

Bessie

I do agree with you, I was just saying what happened to me - that's all. Perhaps I shouldn't have..  

CeciliaAnn, 

It can be all very overwhelming at first - we are thrown into this new world that we know nothing about, and we have to rely on the experts - but in the end it's important to remember that this is your decision.  So if you are uncomfortable with what's being suggested by your doctor, you are within your rights to get a 2nd opinion.  The good news with a DCIS diagnosis is that you have lots of time - and that's especially true in your case, since you've already had surgery.  

When my first surgeon suggested that I would need to have a mastectomy because DCIS remained in all the margins around my two areas of cancer, I was really uncomfortable with that. A MX for such an early stage cancer?  Really?  So I asked for a referral to another surgeon to get a 2nd opinion, and my first surgeon was happy to oblige.  I even told him who I wanted the referral to be with.  Before the second surgeon would even see me, his office sent me for an MRI.  The MRI showed that my breast was full of 'stuff'.  There was no way to know if the 'stuff' was more DCIS or just some benign condition, but given that so much DCIS had already been removed and given the dirty margins all around, all bets were that it was more DCIS.  So the second surgeon agreed with the first that a MX was indicated, but seeing my reluctance, he was willing to try to re-excision lumpectomy, warning me however that the odds were pretty high that the margins still wouldn't be clear and I might need to go back for the MX anyway.  However because of the MRI, I decided that it was not worth trying the re-excision and I agreed to the MX.  It turned out that all the 'stuff' was more DCIS. 

So, based on the experience of one person (although I know that others here have had similar experiences), I would recommend a MRI, particularly if you end up with close or involved margins after this second surgery.   And if you do have clear margins but your surgeon is still talking about a MX, ask him why.  Because that just doesn't seem to make sense.

Let us know what happens at your appointment today. 

CeciliaAnn, congrats on clear margins!  What a relief.  It's sad that your BS can't be more responsive to and supportive about your questions.  I could tell that my BS was not accustomed to getting questions about breast cancer research literature, but he had a good laugh, humored my questions, and eventually thanked me for being so conscientious. I think that they are used to being in control and never questioned, but these experiences show us how important it is to be our own advocates.  Best wishes on your next steps.