Newly Diagnosed!

Birchbeer, look through the DCIS board here for anything Beesie posts. She's our resident expert.

I, too, had DCIS and the stereotactic biopsy. This is very doable, so take a breath. There isn't even any rush. My lumpectomy was done in the hospital in the morning and I was home three hours later. I had almost seven weeks of radiation--sounds scary, but it took longer getting undressed and dressed each day than the actual treatment. Now on an aromatase inhibitor. My oncologist wants it to be tamoxifen, but I resisted that one.

You'll do fine, and there is SO much info on DCIS on these boards. When you find out more info, post and someone will be there to help you.

Breathe You can be OK.  I was in in your shoes almost 2 years ago. You will find you are stronger than you know. I had lumpectomy 4/20 and has told 4/20 that 4/5 margin were DCIS. I had Bilat. Mx 5/1 with no reconstruction. I am walking in my 2nd Komen walk in 2 weeks and will do all 3 miles. Last year on 1 year did 1 mile. Breathe.  Be good to yourself. Talk to your family friends...you will get a fight plan and get to fighting.

Hello! I totally understand where u r right now! That was me on 2/7/11 when I went for a routine mammo and my life changed. No palpable lump present. After a us and biopsy it was comfirmed...extensive but caught early DCIS right breast. I'm a 40 yo Mom and wife with 2 tween daughters! I had  bilateral mastectomies with immediate tissue expanders on 2/25/11 and I'm healing well and returning to work tomorrow. It will be OK. I get all the fears, thinking..."who's going to care for the kids?? Do laundry??? Errands???" But it will work out and what needs to get done gets done. Rely on those that love and support you.It's hard relinquishing control but my girls now both load and un-load the dishwasher, vaccuum and do the laundry!!! This journey for me has been scary, but I see light at the end and this diagnosis has a good prognosis. Be glad for that! I do not need chemo or radiation and once I get my new "foobs" I'm sure I'll be pleased. My husband tells me "I'll be the 80 year old with great boobs!" Take one day at a time and write down all your questions. I took a notebook with me everywhere.  I also got a book, "Breast Cancer for Dummies" at Barnes and Nobles that was informative and recommended by the radiologist. I had a mammo, US, biospy, MRI, meet with breast surgeon, met with plastic surgeon and then waited for the call for a surgery date. Started on 2/7 and surgery was 2/25. Often moves slower for some and there isn't a rush so take your time and explore all your options. All the best!

Shannon

Your course sounds very similar to mine. I choose bilateral mastectomies(BMX) with tissue expanders(TE) placed immediately to prepare for implants and I have no regrets. I wanted the cancer out, not to have to worry about my left breast, and to get on living! The plastic surgeon's assistant told me prior to surgery, "this process is NOT pretty, but a year from now I think you'll be pleased!" This was the best choice for me. Take courage, I just returned to work today and I'm doing pretty good if I do think so myself...new"foobs" and all!

Shannon

Hi there.

I am also a twin mom - I have 2 year old twin girls. I had a single mastectomy in November. I can reassure you that your kids will handle it OK. You won't be able to pick them up for awhile, but you can still cuddle them and hug them. They are old enough that you can explain that you have a "booboo" and need them to be gentle with you. I'm sure they will step up!

As for second opinions and doctors in general, the questions I would ask include:

- Are they positive about your diagnosis? It's crazy but a significant percentage of biopsies are false positives. Maybe you can ask for a second opinion on the pathology.

- Why do they recommend a bilateral mastectomy? While some people prefer this for cosmetic reasons or piece of mind, it usually isn't necessary for DCIS - unilateral will be fine.

- How big is the DCIS? Is it multifocal? I.e. prove that it is big enough to forgoe a lumpectomy.

- Can you get an MRI before surgery? This can help confirm your diagnosis and size of DCIS, and also give you a sense of whether there are issues with the other breast.

- How experienced are your surgeons? How often do they do these surgeries? How experienced is the pathologist that provided the biopsy results?

- What are recommended therapies after surgery? Tamoxifen? Are your hormone receptors positive?

- What are your options for reconstruction (if you care about reconstruction)? Most people get implants, but there are various types of implants and other types of reconstruction that use your own tissue.

Birchbeer -

I don't know why you haven't gotten more tests, but I think you probably should ask for them. The MRI can give them more certainty as to the size of DCIS, and can check the other breast for any signs of problems. I was automatically scheduled for one after my initial appointment with the surgeon, and it gave me a lot more confidence in the treatment decision. Some doctors seem to shy away from them because of a chance of false positives, but I'd rather have information than not. Others might avoid them due to cost, but it should be covered by insurance in the US.

The genetic testing (BRCA) should probably be done based on your young age, especially if you have any family history of cancer. It's likely to be negative, but it is very important to know if it's positive. 

All the tests I got: mammogram, then biopsy, then MRI & genetic test, and a bunch of blood work to prep for surgery and to verify that my recent weight loss wasn't concerning.

As for avoiding reconstruction, there are a lot of options. Check the forum: Breast Prostheses and Reconstruction Alternatives.

Birchbeer what kind of doctor are you seeing?  When all of this started for me, I was seeing a general surgeon and she recommended a mastectomy.  She would not do a thing until I got a 2nd opinion. Have you asked for a 2nd opinion? I definitely would.  My doctor put me in touch with the doctor that she did her residency under.  He is breast surgeon and he specializes in breast cancer.  It was when I saw him, he went over all my options, he recommended a breast MRI.  He pulled my mammogram slides up on the computer and showed in detail why my right breast was fine and what was going on in the left breast.

 Trust me, I know what you are going through. I have two young children at home as well. I was also seriously bruised after the excisional biopsy, so the kids have learned the right sided hug, no jumping on mommy. They adapted

The one nice thing with this cancer is that you do not have to make an immediate decision.  I would definitely ask for a 2nd opinion, and if you can, see if you can find a doctor that this is their specialty.  Take your husband/partner/SO with you. My husband goes with me to all my appointments. He helps me piece together a lof of it afterwards.  It is also nice to have someone holding my hand   Get a notebook and start writing down all these questions.  Then when you go in for 2nd opinion, you are ready.

 Keep us updated!

Bailee4 If they get clear margins, and you have radiation there is no more chance of getting cancer again than having a mastectomy. That is what I have been told. I have had 2 lumpectomies with no clear margins and am considering..most likely having, a mastectomy. My surgeon said she would do either. If I have a mastectomy, I won't need radiation. BTW There is a 50/50 chance of them not getting clear margins.

 I agree you would never choose mastectomy just so you wouldn't have to have the rads. I wish I was having them right now instead of facing a mastectomy. I am not sure why someone would choose mastectomy over lumpectomy unless they were nervous about having it come back or they knew it was a large area.. but then again, there as many reasons as there are people and there are so many variables with DCIS.

I received my diagnosis in April 4 of stage zero, DCIS. Still confined to duct. One of the nurse counselors that helped me through the emotional part, said a lot of young women are choosing double mastectomies, rather than worry about it attacking again. In most cases, it comes back more aggressive. It's scary to know, a month ago, I knew very little about breast cancer, now I feel I could write a book. I had my breasts removed April 21, with tissue expanders put in. Hope to have implants in 4-6weeks. Each decision has to be what works best for that person. I am 45 years old, with 2 teenage children. Everyone here has stepped up with household chores, and with lots of family and friends, we are making it through recovery just fine. Knowing the cancer is out of my body, path reports came back, nodes clear, cancer hadn't left the duct, so no chemo or radiation, my mind is free of all worrying. I am the worry type, and this last month has been nothing but worrying.after reading so many posts on here, it's scary to see just how common breast cancer has become. I thank God everyday for giving me such an early diagnosis. Mine was found in my yearly mammo. I had no lump at all. I feel like God gave me this to get more women to be aware and how important early detection is. I have already had at least 12 friends schedule their mammos, that would not have done so otherwise. I intend to stay on my soapbox about it. I know that I will save many lives by doing so. I have had the most positive attitude about this, I really feel like it has carried me through. Don't get me wrong, I was shocked, devastated, cried like crazy. But then you have to take control and FIGHT LIKE A GIRL! Good luck, I am here if you want to talk!

I was diagnosed on 4/7/11 with DCIS. Was told it was about 1cm by .5cm,....Had my lumoectomy today and surgeon removed area 4cm by 6cm.....so i am assuming clear margins though no one tood me that yet. I guess they will call md withthe path.results. I had a pain block procedur that i only barrely remember and concious sedation. I am getting woozier now that i took the vicodina and my sleep pills so xcuse tge soellng.