Newly diagnosed with DCIS and so scared

Nurse143, I am sorry that you have to deal with this. It can be very scary, uncertain, and overwhemling all at once. What I can tell you is that this site helped me when I was diagnosed, actually more than anyone else in my life. We are all here for you!

Ask lots of questions and be sure that what ever you decide after surgery feel right to you (given the situation). Sending you a big hug and lots of support.

Nurse,

I think that everyone feels a punch in the gut when a doctor says "Cancer" to them, regardless of whether they're Stage 0 or Stage IV. I would say this: DCIS is very treatable, and your chances of being here in five years is over 95%, practically 99%. Your treatment will undoubtedly consist of surgery, and also maybe hormonal therapy (if you're ER+). But, you will not get chemo or radiation unless the pathology from your surgery shows any invasive disease.

I think that as time goes by, your fear will lessen. Even though I was diagnosed at Stage III, I still knock a few back with my gal pals from time to time. Everything in moderation, of course, but things WILL get better. ((Hugs))

Nurse143 you've received some great advice already. We're all here for you!

Nurse143, if your final diagnosis is pure DCIS, then you will be here in 5 years... unless something else unfortunate happens. The 5 year survival rate for pure DCIS is 100%. As for what happens after that, well, the long-term survival rate for pure DCIS is in the high 90s - around 97% - 99%, depending on the study. In fact one of the more recent studies found that women diagnosed with DCIS tend to outlive women who have never had a diagnosis of DCIS or breast cancer.

In my case, I had over 8cm of DCIS that was multi-centric (i.e. it was all over my very small breast) and high grade with comedonecrosis (i.e. the most aggressive DCIS there is). Plus I had a microinvasion of IDC, so I was actually Stage I rather than Stage 0. I had a single MX and no other treatment. And here I am, 11+ years later, with no recurrence and no further problems.

The fears that you have are perfectly normal after a diagnosis - of any Stage. Any diagnosis is a shock to the system, and we all go through that, thinking that every ache and pain is a sign that the cancer is more advanced than what we've been told. But it's important to separate your fear from the reality of your diagnosis. If your final diagnosis is pure DCIS, your odds of being here when your kids become grandparents is just as good as it was before you were diagnosed.

Be kind to yourself over the next 3 weeks as you wait for your surgery. Good luck with your surgery. And fingers crossed that your final diagnosis turns out to be pure DCIS!

Nurse, yes, I had genetic testing that was negative, and since I really didn't want to have the MX (I had just too much DCIS in a small breast so I had no choice), it was an easy decision for me to have the single MX and not go with a bilateral. That said, I was 49 and you are 31, and that could make a difference. With a BMX, while there remains a small recurrence risk and while it's still possible to develop a new BC (a new primary, unrelated to your previous diagnosis), the risk is relatively low - only about 1% or 2%. But with a healthy natural breast, the risk is higher, and the younger you are, the higher the risk, simply because you have more years of life ahead of you. At the time I was diagnosed, when I was 49, my oncologist estimated my risk to be diagnosed again, at some point during my life, to be about 22%. Today, 11 years later, my "remaining lifetime risk" is probably more like 17% - 18% - because I now have 11 fewer years left in my natural lifetime. I just had genetic testing done again, and again tested negative (this time I was tested for 20 possible breast cancer genes) and was told that my lifetime risk may now actually be closer to only 10%. For you, at 31, your risk, if you keep one natural breast (with natural sensations - that's a big advantage) will be higher. You should talk to your genetic counsellor and oncologist about this.

As for Tamoxifen, my oncologist actually recommended against it, suggesting that for me, at my age, the risks from the drug itself pretty much outweighed any benefit I'd get in terms of breast cancer risk reduction (protection for my remaining breast). I did my own research and ended up agreeing with him, and so it ended up that I had the UMX and nothing more. Some women who have a UMX do however opt to take Tamoxifen. With a BMX, if the final diagnosis is pure DCIS, Tamoxifen is not usually recommended, unless there are extenuating circumstances such as positive margins or the patient is BRCA positive. My suggestion is that you hold off on making any decisions about this until you have your genetic test results and final pathology results. Hopefully your final diagnosis remains DCIS, but there always is a possibility that the final diagnosis could be different, and that would change the treatment plan. So it's a bit premature right now to be making these decisions because you don't have all the information yet.

With regard to fat grafting, I had implant reconstruction with no fat grafting. I'd suggest that you take a look at the Reconstruction Forum on this board and maybe ask that question in a new post there.

Hope that helps!

Nurse143, BreastCancer.org states that it is currently believed 5-10% of bc is caused by genetic factors:

http://www.breastcancer.org/risk/factors/genetics

which correlates with several other sites. Now, genetics researchers and geneticists are still finding new genes that increase risk for many different types of cancer, so that number may be slightly off, but it would be very difficult to believe that the number would ever go up enough to account for the majority of bc. So the vast majority of us don't have an increased genetic risk.

So most of us don't know why. We just know that we do/did and work with our providers on a treatment plan to get rid of it and try to keep it from ever bothering us again. You can do this. You have found an awesome place for experience, wisdom and support; no matter what your diagnosis or treatment choices are.

yeah, I had multi-focal disease, so my lx turned into mx. I was 38 at the time, and had hoped for lx, so it was too much of a leap for me at the time to think bmx. I honestly didn't give much thought to what my risk would be for my remaining boob, so now have to stay vigilant with mammos Whatever choice you make that feels like the right thing for you IS the right thing. We all have to decide what our personal risk is and how much risk we are willing to live with.

Yesterday, I received a diagnosis of DCIS, high grade, solid and comedo types with associated calcifications. I'm being told that this is very curable, but all of the reading about recurrence likely within 5 years, I'm scared to death. I'm 42 years old, mother of twins. I'd love to connect with someone that has had the DCIS high grade diagnosis. What was your treatment? At first it sounded like it was going to be easy as far as treatment (lumpectomy, radiation, possible chemo) but after reading so many posts, I see a lot of mastectomies. This is all so new for me so I know I still have a lot of unanswered questions and I'm still waiting on test results. But still would Ike to connect with people that can relate

Thank you so much for reaching out. So you had your results read by a 2nd opinion pathologist? I'm trying to figure out who and when to get the 2nd opinion. Surgery consult on Monday.

Hi ReneeF,

I had high grade DCIS w/ Comedo Necrosis. My surgeon wanted an MRI before surgery. The MRI did not find additional areas of concern. So I had a lumpectomy followed by Mammosite Radiation and a trial of tamoxifen.

If you haven't read Beesie's posts on DCIS (a layperson's guide to DCIS) and the lumpectomy+ rads vs. mastectomy decision (scroll down on the first page in "this thread" to Beesie's post), I would recommend them. Lots of good information there to help you make the decisions that are right for you.

I would strongly suggest that you take your time and consider carefully. You can always get a mastectomy later, but you can't un-do it.

My best wishes in making the decisions that are right for you!

My best wishes!

LisaAlissa

So MTwomen, you had dcis grade 2 and you still ended up with a mastectomy? It's so confusing, I'm being told lumpectomy for grade 3, with radiation an possible chemo. I know they don't know until they get in there, take it out, test lymph nodes, etc.....but I just question if I should be more aggressive? Or do I decide mastectomy and avoid the crap afterwards?

Thank you to all who have responded! It's a huge relief to be able to connect with women who are going/have gone through a similar, terrifying situation.

hi Renee- there is a forum on the active topics listing for surgery, before during and after that has the header one in six women choose mastectomy. It's a good read especially some of the latest posts. for someone with your diagnosis you're likely deciding between mastectomy + hormone therapy if your cancer is er+ vs. lumpectomy + radiation + hormone therapy. Those were my choices with DCIS and idc stage 1 high grade with calcifications. In addition to some other factors that aren't relevant for your situation, I chose mastectomy so I didn't have to worry about heightened surveillance after and always having that feeling of dread waiting on results. The risk of a recurrence is very low with mastectomy followed by hormone therapy. I opted for immediate reconstruction using natural tissue (called DIEP flap reconstruction) and Im very happy with the results so far.

It's not an easy decision and no one else can make this one for you. The advice I can offer is to research all your options, look at before and after pics, talk with other women about why they made the decision they did and in the end go with the option that leaves you with a feeling of peace all things considered.