When and who gives you more details?

Ask all of the above--but probably not your primary care doc. Demand your path report verbatim--it’s your right. If your health care system has one and you haven’t signed up yet, create an account for its patient portal (most use the “MyChart” web software). The report is probably in there. (If you’re in NYC, unless your primary is wholly unaffiliated you & she probably are part of a larger system with such a portal).

Dunno about a better QB for NYC (although your Giants just moved ahead of the Saints), but we could use some better defense here in Chicago.

I was just in your shoes last Spring... I'm sorry you need to be here!

Did your Primary have any recommendations for care? Mine did, fortunately... She sent me to a breast center, and I was quite happy with my initial visits so I stayed there rather than checking into second opinions. My first appt was with a Surgeon, and she's mostly acted as the "QB" in my journey here. Although she determined I should do Chemo first, and referred me to an Oncologist.... (And now that I've done chemo and surgery, I meet with a radiologist next week..)

Anyway, when my doc called me initially... It was the same. I only heard CANCER! Knew nothing else! Once I met with the surgeon, they started explaining all the details (staging and type and treatment and all that). I didn't tell my family until after I had this figured out. That initial time was the WORST! Once you start planning for fighting, it gets a little easier!

The boards and ladies on here are a great wealth of encouragement and information! I haven't posted on here a ton, but it's been so helpful to me so far

Hi TaraL. I'm sorry about your diagnosis. I, too, was freaked out about the unknown. I don't know if this will be "right" for you, but here is what I did and what I'd RE-DO if I could:

1. Keep moving forward and go to your imaging appointments. Become your own advocate, and always ask for earlier appointments if someone cancels. Get your pathology reports. Learn about YOUR cancer. The problem with having your pathology report is that if you have a science brain like mine, the Internet is NOT your friend.... When you Google things, you usually get worst case scenarios and generalizations, and it freaks you out more.

2. Find a Medical Oncologist (MO), and she/he becomes the person who makes all the calls--your QuarterBack. My breast health specialist was a surgeon who found the tumor, so I let her make all the calls. But, if I had to re-do it, I'd get an MO first because sometimes the MO wants to try a treatment BEFORE surgery (called neoadjuvant therapy, which has been shown to be really helpful for some patients). A surgeon does surgery, so my tumor was gone before the MO could try anything. The MO will tell you all about your cancer and your options. You already know that there is not just one kind of breast cancer, and you want to the the information for your specific kind of cancer.

2. Have your pathology report and your imaging reports ready and get second and third opinions. Then, choose an MO. If you qualify for the OncotestDX, get that to see if you need chemo. My lymph nodes didn't have cancer, but I needed chemo. Some people have cancer in the lymph nodes but do not need chemo. Keep reminding yourself that CANCER IS NO LONGER A DEATH SENTENCE! It's a very treatable disease now. And then remind yourself of that again.

3. With your MO and knowledge of your specific tumor ask your questions about your tumor.

4. Ask the people closest to you what they would do, but make sure YOU make YOUR OWN decision. For me, asking for opinions helped my family feel like they were helping me --really, what else can they do?-- you get different perspectives, and ydecide what give you regrets and/or no regrets. Once I had a plan, I was less freaked out because my science side kicked in to the "Let's get this done" mode.

5. Execute the plan whether it be surgery, radiation, chemo, targeted therapy, or a combination of things.

I had surgery and 3 rounds of chemo. I stopped chemo early due to a side effect, but my doctor was fine with it. I am now 10 days into radiation. There are always alternative routes even if you start out down a certain path. Good luck.

I'm sorry to hear your news. And you've had great advice as you start this journey-no-one-wants -to-take.

Just wanted to note that this is only the first pathology report you'll have--pathology report on the biopsy sample.

When you have surgery, you will have a second pathology report (on the surgical sample) which will (for the most part) supercede the current path report. Larger sample, so a more informative report. Because part of staging is the size of the tumor, the biopsy may not give enough information for that. However it will most likely talk about the "grade," which is a separate metric from "stage."

Another thing to look for on path reports. Your path report may identify the type of cancer: IDC, DCIS, etc. But there may be different components of your abnormal cells. So they might say (for example) both DCIS and IDC (or invasive anything). You'll (likely) be told whether the treatment will address various types separately, or whether treatment of one will handle the other types noted on the path report as well.

Once you have your path report, come back and people here will be able to help w/ interp.

When meeting with various surgeons, consider asking whether they will allow you to record the consultation. It's helpful to be able to go back and listen again. If not, try to take another "set of ears" with you. This is so hard to hear (discussions of your cancer) that it's easy to miss something. Some treatment groups provide a "navigator" who (at your request) will come with you to consults and be a notetaker for you. But best to be able to re-listen yourself.

HTH,

LisaAlissa

I know it’s all overwhelming, and therefore it’s easy to be intimidated by authority. But the one thing I learned right away was to refuse to take “No” for an answer, or at least be assertive as possible.

For example, when I got my screening mammo report in my patient portal inbox the morning after, the hospital’s Center for Breast Health phoned me and told me to call the scheduling desk for an appointment for the diagnostic mammo & possible ultrasound. So I did--and they gave me the first available date....which was when I would already be out of town on business. I told them it was unacceptable, especially since they told me time was of the essence. I was told that if I talked to the supervisor the next morning, she might be able to squeeze me in earlier. Sure enough, I did and they were. When the diagnostic mammo led to an immediate ultrasound which indicated biopsy was necessary, I asked if it was still okay to take my trip and do the core biopsy upon my return two weeks later, and they said it was. Then, the evening of the day after my biopsy, when I got my path results from my gyne’s partner, she told me to call my gyne in the morning for details beyond “IDC, grade 2." Before I could call, my doctor called me the next morning with the news that the tumor was ER+/PR+ and HER2-, and that my next step should be to call the surgeon. She recommended several but told me the one she preferred, and that I should call her scheduler as well as the nurse-navigator assigned to me (find out if your system has one). I made the appointment, met with the surgeon and her nurse (we clicked immediately) and she confirmed my tumor profile was quite favorable and though lumpectomy + rads offered the same survival benefit as mx, it was still up to me. I told her I preferred as noninvasive a surgery as would still be effective, so I wanted lx. I then told her of the Mediterranean cruise we booked for the week before Christmas, and she said that barring complications there was no reason to cancel it. She then said to call her scheduler the next morning for an appt.--but when I did, the scheduler told me she operates only on Fridays and that the next available Friday was a month out! I told her about the cruise and she replied “well, sometimes Dr. Y. trades O.R. time on Wednesdays with other surgeons--call her nurse tomorrow.” I did, and was able to get a date 8 days out. Persistence pays off. The kind of persistence you may be reluctant to exert with, say, customer service lest you be seen as a nag or a pest is entirely appropriate when it’s your life and health at stake. Remember, too, that your doctors work for you and not vice versa. That doesn’t mean you should be irresponsible or noncompliant, but repeat after me:

“Why, yes--it IS all about me.” If not now, when would it ever be?

Tara, one big question is which hospitals/networks does your insurance cover? You know of course that this dictates which doctors you have access to. No matter what, cancer is expensive, so even if you have a good plan, you don't want your team to be out of network even if your plan covers that.

I'm also in NYC and like dtad can give you what info I know about local docs, if that helps.

Tara, I see you have gotten excellent help so far. I have to tell you that I so remember being where you are right now. Like you, I couldn't get my hands on information fast enough! I also got the official diagnosis on a Friday and I think I spent the entire weekend on this site. I promptly made my doc office fax me my path report first thing Monday morning. My doc (who I really love) didn't want to give me the info at my appt on that Friday because she didn't want me to google things and get myself all worried. She underestimated me. I'm all about knowledge is power. I want to be able to ask intelligent questions. Unfortunately some doctors only tell you what they think you need to know. I happened to be able to get into a breast surgeon that Monday due to a cancellation (they had initially told me it would be a two week wait!) When I saw the breast surgeon I was able to intelligently discuss my tumor, ask if I could be a candidate for nipple sparing surgery, and what her experience was doing this procedure.

I've also found that docs are busy and have many patients. You are and should be the most knowledgeable about your pathology. I have had to remind/correct various docs of my test results, whether or not I was pre/post menopausal, etc. One doc couldn't remember if I had a lumpectomy or mastectomy DURING my breast exam (hats off to my surgeons to a job well done. ) So continue being your biggest advocate and research the heck out of every step along the way!

And I also found out while my mother was on a long awaited trip to Germany to visit relatives with her brother. It was hard not telling her but there was no reason to "ruin" her trip when there was nothing for her to do but worry. She had plenty of time to do that after she got back.

I'm sorry you are forced to ride this BC train, just hang on tight and I hope your trip isn't too bumpy along the way. It's been 5 years this month for me and it gets more and more in the rear view mirror for me every day.

Since you are in NYC you have a GOOD choice of Hospitals and Doctors......Liz

Hi Tara. Just wanted to let you know if you need any help in finding a good team I'd be more than happy to help. (I don't know if you turned your PM on- I sent you a message early this morning.) We are lucky that in NYC we have 4 NCI designated cancer centers. I've decided to have my treatment at NYP Columbia, basically because I was interested in having IORT (Intra-Operative Radiation Therapy done at the time of lumpectomy). The other centers are Perlmutter Cancer Center (NYU Langone), Tisch Cancer Institute (Mt. Sinai) and MSKCC. Your brain must be whirling now, but as others have said, once you make your decision and have a treatment plan it does get easier. Hope this helps a bit, and feel free to PM me if you need to hash all this out. All the best!

Lynda