Diagnosed with IDC late afternoon on 7/26/2017

The initial stage when you first hear, is the hardest. I am your age and have kids in their 20's and although one went to the first appointment with me, and stayed in the hospital with me after the first of two mastectomies, they have not been terribly affected by going through this with me.

Right now you don't have much information on the specifics of your diagnosis. Chemo is not a foregone conclusion, not at all, nor is radiation. You will get pathology results, and hopefully an Oncotype score or other genomic test, and once you make a decision on treatment it will be easier.

As for using a smaller hospital, don't do it. The other poster mentioned Mt. Auburn. That hospital had a pathology result that was wrong, that caused me so much trouble and stress. They had me as HER2+. I was headed for Herceptin and chemo. Thank God I switched over to Dana Farber, and, later, MGH.

There must be a way for you to get coverage at Anderson. I have managed to get coverage out of network for my kids. Call insurance and talk to a supervisor, tell them that Anderson is the number one cancer center. Failing that, see if you can keep an oncologist at Anderson and farm things out to another covered hospital. For instance, you could talk to the oncologist at Anderson about surgery, but have it done elsewhere, and then have the pathology specimens transferred to Anderson for testing-? At the very least, use them for a second opinion (which also involves having pathology tests done).

i was just diagnosed on 7/13. still waiting on clinical staging, let alone a pathological one. i don't have much to add to this conversation, as i'm just a "bad boob noob" but i hope for you peace, understanding and love. i've already found so many new sisters here, and i hope you will too.

I am so sorry you've had to join our club. I may be in the minority, but I also would encourage you to just think about what you might be able to have done locally. I worked with a BS locally, and then had to fly out of town for my mri (no local imaging center routinely performed and read breast mri, which is critical for accuracy). I had a second opinion on my pathology from an expert (out of network) and I had a consult at Duke Cancer Center breast clinic (how awesome to meet with several different specialists in one day), and then returned to carry out the plan with my local team. My insurance was willing to cover the additional out of network consults, as my treatment plan was carried out locally. Putting yourself in the position to have to pay off large amounts of health care debt when you don't necessarily have to, will certainly add stress for you after you finish your treatment; just at the time you should be focusing on healing and rebuilding. It is a lot to consider right now, while you're still getting all of your information. But you don't necessarily have to make your mind up this instant. Take a few days and collect your thoughts as you collect more intel. We're here to help you! ((hugs))

Another option that may be available to you is to get your surgery done at MD Anderson, and your chemotherapy/radiation treatments done at a local hospital close to home. That is what I am doing. I'm getting my surgery at Dana Farber. With chemotherapy (if you even need it) it can really be done anywhere because there is no advanced machinery involved. Just have your doctor order what you need and send the order to that hospital which may also be covered by your insurance, and you will also save money.

Oh, I am right with you on this! I posted under "triple negative" forum and won't go into the details. I always thought I would get uterine cancer because my mom died at 52 of it after years of suffering. Also, because I had my own problems in that area, and I take after her in other medical areas. However, I hit the lotto and got my breast genes from my dad's side.. (9th occurence among 6 people). I initially was diagnosed with atypical ductal hyperplasia early this year at a regional cancer center. (We live in a fairly large city, you'd think that would be fine). Also my needle biopsy disagreed with my lumpectomy biopsy so I got a second opinion from a well known hospital 5 hours away, where some of my family were treated (we don't have BRCA genes). When I say well-known, I mean a "movie star" famous facility. That facility not only found DCIS, they found invasive IDC. It was super small, very early stage, but high grade (fast growing). They are recommending double mx and the local docs here disagree. The subsequent MRI/Bone Scan and CT scan show various problems but do not agree with each other. It feels like no one is on the same page, including the pathology labs and the radiologists! (I'm guessing it is because it is so small,so early). If I hadn't already made a decision, I might even get a third opinion.

However, because the chance of recurrence seems so high in my family, I am going to do the double mx surgery and reconstruction (assuming my insurance approves... apparently they also disagree that double mx is needed... probably because the hospital and reconstruction surgeon are in a different state and are movie-star related). Luckily I do have good insurance and it will probably be resolved. If you are in doubt at all, get a second opinion out of town. Then there is no croney-ism, no reason for the doctors to agree if, in fact, they disagree. It certainly seems like you could find some hospital/doctor that is in your plan. I will do the main surgery and reconstructive surgery at the "famous" hospital, but will have the "fills" done locally. And if chemo is determined to be necessary, I will have that done locally.

I am 62. There are lots of cancers in both sides of family but of all different kinds. I knew cancer would be my downfall, just didn't expect breast cancer to come to me through my father's genes (he is 90 and doesn't have it). None of us is BRCA +. I am the only one found to be triple negative.

Good luck to us!

Mary Mac

PS: Colon cancer, prostate cancer, ovarian cancer and breast cancer are supposedly related. We have several prostate cancers, 1 colon cancer, one brain cancer, one lung cancer, one pancreatic cancer, and 9 occurences of breast cancer. AND even though I did the extended genetic panel test, I have no genetically known markers.

IAAN, Sorry you are going through this. I empathize with you and your concerns. I am single, self-employed and have 2 grown children. My DD found out about my DX while I was at her house on the phone making an appt for a Diagnostic mammo. I had to tell my DS when he got back from his honeymoon, that he finally had a few yrs after marrying. That was hard, since he had no clue. But, they supported me through it all and that helped me immensely. I don't think it's easy to process, no matter what age they are. It's difficult to deny the protective mode we feel when it comes to our children. I somehow felt a sense of guilt like I had let them down and was causing them hurt. But, this is about you now. As far as the financial burdens, talk to the social worker at your medical facility if you need financial help. There are many resources for grants, etc. if you qualify. The American Cancer Society is also a great resource for rides to appts, wigs, cleaning house, etc. PM me anytime. I am Northwest of Houston close to Austin. Best wishes.

Greetings from Galway, Ireland. I know it's such a shock when you hear the word 'cancer' and evertyhing seems to be havvening so fast and out of one's control. I was diagnosed in May 17 and start my chemo next week. I felt that as I was in Ireland my treatment i.e my chemo regime might be different to the USA.( I worked in Calif in the 90's as an RN in private and public hospitals for a brief period).I googled and googled and it looks like the treatments for the various breast cancers are pretty standard. I have triple negative - Invasive Ductal Cancer, which is quite aggressive. I had surgery, this is followed by AC 4 doses every 2 weeks, followed by Taxol weekly fro 12 weeks. Reading some of the posts, I stand to be corrected but it has reassured me that the treatment is fairly standard regardless. I do hope you make the right decisions and not get into unnecessary debt if there is no need. I wish you every success with your treatment and my prayers are for us all on our journey. Keep us posted and God Bless.Galway2017

I was diagnosed with Triple Negative IDC 4cm tumor, BRCA 1+ Grade 3 on the morning of July 27 2017. I missed the call on July 26th. I was 41 weeks pregnant and 29 years old I'm going to come back here to post when I get my pCR after neoadjuvant chemo and you should too!