Newly diagnosed, send help!

Annie, first, a dcis diagnosis, presumably based on a core/needle biopsy? gives you some time. Many women on this board took months to research treatment options, doctors and hospitals before proceeding. 

your doctors should be able to advise whether to have the mri in your current location and they might have some advice on new doctors/hospitals. An mri will provide more information - whether there is more dcis than was already detected. you are fortunate that that is part of you diagnostic plan.  Will your insurance change? that might be an issue for you to consider regarding whether or not to have the mri with your current providers. Also it would be helpful if you said where you were moving. There are like 77,000 women on this site who might help with recommendations!!!!

Take deep breath, you have alot going on, much of it happy and exciting! New home! New state! and some of it worrisome, bc, we are here to share it ALL with you.

Julie E

 Here are some good resources someone posted for me. 

cancer centers

http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

castle connolly america top docs

http://www.castleconnolly.com/doctors/index.cfm?CFID=8789884&CFTOKEN=18730440

Review the reports and get referrals for your new healthcare team.  You need to have a team of doctors.  An Oncologist, a Surgeon, and Radiologist.  They need to be on the same page of your treatment.  My first experience with Breast Cancer was wonderful and I was given royal treatment.  It made the ordeal easier because I had good doctors in place that were concerned for me.

Three years later the Cancer returned.  I then had the Bi-Lateral Mastectomy.  I wish I had done that the first time around.  The second surgery was rushed....no team of doctors and no real communication.  I had to do all the registration and lab scheduling on my own.  The surgery went fine as far as the scar healing.....When complications arose....everyone was in denial and no one had any answers for me.

So get a team of doctors, don't just go blindly into this.  Take charge of your own care.  You have alot of people cheering you on.  Good luck.

Annie,

DCIS is not urgent, so yes, you do have time to move and then get this taken care of.  But keep in mind too that all DCIS is not alike.  With what may potentially be an area of up to 5cm of high grade DCIS with comedonecrosis, you have what possibly is a high risk case of DCIS.  This type of diagnosis is a world apart from the type of DCIS diagnosis that articles such as the one Rianne referenced talk about.  So while a 30 day delay shouldn't be a problem, you should take action within a reasonable period of time.  Hopefully your final diagnosis will still be DCIS once all the surgery is done and all the affected breast tissue has been analysed, but you should be aware that in about 20% of cases where DCIS is found in a needle biopsy, something more serious is found once more breast tissue is examined.  Usually the "something more serious" is only a microinvasion (which I had) but sometimes it's more.  For those who have high grade DCIS and for those who have large areas of DCIS, the risk is greatest.  

So get your move done, and then get to the new doctor for your surgery.  Good luck with the move, the appointment with your new surgeon and with the surgery!

Whoa.  Go get yourself a second opinion.  I'm not surprised that a mastectomy was recommended for your breast with BC - the area of calcs is quite large - but there is absolutely no medical justification for a bilateral. My suggestion is that you seek the opinion of another surgeon but also an oncologist.  An oncologist is the doctor you should be talking to when it comes to decisions about your other breast.  An oncologist deals with future risk levels; that's not an area of expertise for a surgeon.  Surgeon's operate on whatever is there now.

My situation wasn't much different than yours.  I had over 7cm of high grade DCIS with comedonecrosis, along with a microinvasion of IDC.  After my MRI showed my right breast to be full of "stuff" (all of which turned out to be DCIS) and showed my left breast to be clear, I made the decision to have a single mastectomy.  A lumpectomy was simply not a feasible option.  But there also was no reason to remove my healthy breast.  My surgeon never suggested that I get a bilateral mastectomy.  From what he's said to other patients I know, I believe that he would have agreed to a bilateral if I'd requested it, but he would have been very relucant and he would have tried to talk me out of it. 

In talking to my oncologist, he explained that because I have been diagnosed with BC one time, my risk to get BC again, in my remaining breast, is about double the average for a woman my age.  I was 49 when diagnosed.  The average 49 year old has about an 11% lifetime risk of getting BC (to age 90); this meant that my risk was 22%.  That's high but it also meant that there was a 78% chance that I wouldn't ever get BC again.  For me, the 78% chance of not getting BC again is why I was never tempted to have a bilateral mastectomy.  And as each year passes, my remaining lifetime risk goes down.  This is a concept that isn't often well explained but I was lucky that my oncologist explained it to me.  We all know that the risk of BC increases with age.  That's true - our annual risk does go up.  When you are young, your annual risk to get BC is less than 0.1% per year.  By the time you are in your 70s, your annual risk is more than 0.3% per year.  But as you age, because you have fewer years left until you turn 90, your lifetime risk goes down.  So although my lifetime risk to get BC again was 22% when I was diagnosed at the age of 49 five years ago, today, having not been diagnosed over these past 5 years, my lifetime risk is down to 20%.  Every year that I'm not diagnosed, my risk continues to drop.

For those who have a single mastectomy, one option to address the higher risk for the remaining breast is to take Tamoxifen.  It's often recommended.  I considered it but to my surprise, my oncologist actually recommended against it for me.  He felt that my risk level, and the small benefit that I'd get from Tamoxifen, didn't warrant the risks and side effects of the drug.  Although taking Tamoxifen for 5 years can reduce the risk of a new BC by about 45%, this risk reduction doesn't last forever.  Studies have shown that the full benefit extends at least 10 years and possibly 15 years but after that, the benefit wears out.  I had 41 years of risk to deal with; taking Tamoxifen would only help me for the first 15 of those 41 years.  The total benefit in terms of risk reduction from Tamoxifen for me would have been about 4%, taking my lifetime risk from 22% to 18%.  For many women, this amount of benefit warrants taking the drug but for me, it didn't. 

The main point of all this (sorry it's so long!) is that my diagnosis was similar to yours and yet I had a single mastectomy - with no suggestion of a bilateral - and my oncologist didn't even recommend that I take Tamoxifen as a preventative for my remaining breast.  So your surgeon, in recommending a bilateral mastectomy, is way on the other end of the caution/treatment scale.

Just some things to consider..... What it comes down to is that if you want to have a bilateral mastectomy, that's one thing.  But I feel that your surgeon was completely out of line in recommending it. 

Annie,

I'm sorry about your diagnosis. I live in near Rancho Santa Margarita. My breast surgeon is Lisa Curcio. She's located in Mission Viejo and operates at Mission Hospital and Saddleback. She is a breast cancer survivor herself. She was 37 when she was diagnosed, I believe. While I did have a bilateral mastectomy, she did not push that on me at all. Here's her website:

http://mybreastcarespecialist.com/

If you want to talk or have coffee, let me know. I was diagnosed almost a year ago, and I'm almost done with reconstruction. Good luck.

I also have been just diagnosed and am scheduled to meet with a surgeon today and oncologist tomorrow.  Don't know what to expect, and am just trying to get my head around the whole thing.  What kind of questions should I be asking?