Just diagnosed with DCIS Grade 3 - Age 28

Hi Swearp- I feel for you- its not fair to be dealing with this at age 28.  I'm 52 and I was diagnosed with DCIS grade 1 in December - it was diffuse (2 places 4 cm apart) so the standard of care is mastectomy with sentinel node biopsy. I have been followed as a high risk patient at Northwestern for many years because my mother died of cancer at 45 AND because there have been various benign lumps and microcalcifications on my mammos. I had already gone through the process of thinking through what i would do if i were diagnosed with DCIS when i had a stereotactic biopsy 8 years ago.  This is just to say that it was "easy" for me to process this and make the decision to have BMX and reconstruction b/c I have been bracing myself.    I wanted to get it over with and behind me, but I could have waited 6months if I had wanted.  I'm doing fine and adjusted to the "new me."  

I was still freaked out though, and I was a little comforted by the "patient guide" from my breast surgeons office that started out "Breast cancer is not a medical emergency; it is an emotional emergency."  Keep that in mind.  You have 2 great cancer centers near you and unless for some reason you end up with very different recommendations, I don't think you need to be traveling for a second opinion at this point. UCLA would be a closer option.  My pathology report was simpler than yours, so I didn't bother to get a second opinion, but if I did, it would have been at University of Chicago, which is 12 miles from me.

You might want to check out this cite for young women dealing with cancer too for emotional etc. support.  At 52, with a great partner and past child bearing years, the emotional issues are easier to confront and move beyond.  

http://www.youngsurvival.org/breast-cancer-in-young-women/overview/

I'll be hoping for you to get good news from your biopsies, but whatever happens, you will be able to deal with it and be supported.

Swearp, I also live in San Francisco and had all my treatment in San Francisco. Right now, I would suggest staying away from the computer and I wouldn't do anything right now until you have your pathology report...which could take up to a week.  Where will you be having your biopsy?

I was treated at Stanford and they were very good.  Who did you see there?  It makes a difference.

The way they characterized your path report is different than what I usually see, but I think the ERA and PRA mean estrogen and progesterone receptors, respectively.  Trying to understand how they put it, it looks to me like these are "negative".  If so, that is a more aggressive type of dcis.  With those receptors negative, it is true that SERMs like tamoxifen are not useful. 

So you have a fairly large amount of receptor negative DCIS.  At either Stanford or UCSF they will likely test that sample for HER2 status.  This is new as they used to not test DCIS for Her2neu status, but I think they do now and in your case it is certainly a good idea. 

Hopefully it just stays as DCIS.  Even though the stanford doctor was suspicious, you just have to take the diagnosis you have at present and keep doing the testing to establish if there is anything else.  At places like Stanford and UCSF they really see a lot of weird and remarkable cases so they are cautious.  This is a good thing, though also unsettling.  BTW, while at Stanford I met a 25 year old gal who had so much DCIS that she needed mastectomy but that was ALL she had, just DCIS.  So it happens like that sometimes -young gal, large dcis, no invasive.  Let's hope that's how it goes!

Chemo is not given for pure DCIS. 

With a larger area of DCIS, certainly the risk is greater that some invasive cancer might be found.  On average, about 20% of women diagnosed with DCIS via a needle biopsy are ultimately found to have invasive cancer once all the affected breast tissue is removed and analysed.  That's the average; the risk would be lower for women with biopsies and imaging that shows a small single focus of low grade DCIS and the risk would be higher for women with biopsies and imaging that shows a large area or multi-focal high grade DCIS.

If it is found that you have some invasive cancer, whether or not you need chemo depends on the size of the area of invasive tumor, whether or not there is nodal involvement, the hormone status (triple negative or HER2+ are more likely to get chemo for even small invasive tumors) and the Oncotype score (for those who are ER+) and your age.  At this point, with only a needle biopsy result showing DCIS, it's good to be discussing the options and possibilities, but it's premature to be assuming that invasive cancer will be found and that chemo will be necessary.  It's possible, of course, but it's also very possible that the diagnosis will be pure DCIS or that only a tiny amount of IDC will be found, not necessitating any change in the treatment plan vs. pure DCIS. I had a microinvasion of IDC and with a microinvasion, the treatment is the same.

By the way, to clarify the point about HER2, while HER2 testing may be done for DCIS, the results don't change anything. There have been lots of studies done on HER2 status and DCIS, and so far the jury is out on what it means.  Whereas with invasive cancer it is well understood that HER2+ IDC is more aggressive, there are no conclusive results to suggest this is true for DCIS.  It might be, but it might not be.  Some studies have shown it both ways (more aggressive and less aggressive).  The other thing to consider is that anywhere from 40% to 60% of DCIS is HER2+ whereas only ~ 20% of IDC is HER2+.  No one yet knows why more DCIS is HER2+.

swearp, what's your next step now?

Hi Swearp,
I was diagnosed at 29 with grade 3 DCIS measuring 2.1cm in my left breast. I had a lumpectomy and have now just started radiation (4 out of 28 so far). Based on my age, family history, size and grade of the mass and margins my drs recommended either mastectomy or breast conserving surgery, radiation and tamoxifen. To me the options sounded pretty aggressive, so I got a 2nd and 3rd opinion, who all said the same thing. My cells were ER/PR + so I was told to wait at least 3 years before having any children (this was almost more devastating to me than hearing that I had DCIS).
For me, the part you are going through now, where there are so many unknowns and you don't yet have a plan, was the hardest and most stressful. Since you are dealing with DCIS, like everyone above has said, you have the time to research, ask questions and make an informed decision. Also, make sure you choose to go with a dr who you trust and have a good relationship with, because you will be seeing a lot of them in the upcoming months.
I know it really stinks to be going through this so young, I feel like a ticking time bomb with so many explosive years ahead, but with the right plan your risk can be brought so low and you can go back to living your usual life, at least that is my plan. I hope that helped a little... I found these discussion boards have been a wealth of knowledge and support, you are in the right place. PM me if there is anything else I can help you with

If you need to travel due to BC treatment. go check out www.corporateangelnetwork.org.

My understanding is that (with DCIS)  until they actually remove the breast tissue surgically (lumpectomy/mastectomy) you can't rule out invasive cancer- meaning areas where the cancer has "breached" the walls of the ducts.  They have to get clean margins.  That's one reason lumpectomy is not the recommended treatment in cases like mine where there were two areas biopsied 4 cm apart.  They can't "see" the DCIS (not a solid tumor- just microscope cells) and they assume that there is probably more there in between the two areas.  So if they just do a lumpectomy, they often don't get clean margins and have to keep going back in and taking out more tissue until they get clean margins. So in that case, you end up having multiple surgeries and a bad cosmetic outcome.  Also, if they find invasive cancer after the surgical treatment, your diagnosis changes from DCIS to invasive cancer and the treatment plan probably changes.  So you probably aren't going to get the clarity you want until you want until after the surgery.   I know its scary- even though I knew i was at low risk for invasive cancer, I was scared about waking up from surgery and finding out that it had spread to my lymph nodes.  I was less concerned about there being a little invasive cancer b/c they were removing all the breast tissue, but I wouldn't have been thrileld about that either.

I had DCIS grade 3, did the lumpies (it actually took more than one surgery to get clear margins, sneaky stuff that DCIS) but did my full span of rads, and now coming up on the end of my 5 years of aromasin!  Healthy and doc calling me cured!  It is scary for sure.

I upped my time at the gym as soon as rads were over.  Instead of 2 X a week, been doing 4 X and working with a trainer

the gym, is my form of mental theapy? I so recommend taking care of your body and your mind.

Best of luck and hope all turns out for you