New IDC diagnosis

lemonee

Hello. I'm a 48-year-old mother of two, ages 27 and 17; grandmother of two. I was finally formally been diagnosed with IDC today. I asked about the grade, size, etc., but the surgeon said he wouldn't be able to tell me any of that until later on when they sample more tissue. He did say it's poorly differentiated, and I know from the original mammogram and ultrasound that it's approximately grape-sized. He said the radiologist couldn't definitively tell whether it's in the lymph nodes or not. I'm going later this week to talk about my options of surgery versus seeing an oncologist first. I'm going to get copies of all my reports when I go in. Can anyone offer some input? I really do appreciate the wealth of information available on this site.

KSteve

lemonee - So sorry for your news. This is without a doubt, the hardest part of the journey. You will feel much better once you have your medical team in place and know the way forward. For me, my oncologist was the one driving the bus. I had triple negative, so the decision was made to do chemo first, then surgery. I would suggest getting in with the surgeon and oncologist so you can see what both say. Knowledge is power. Just try to take it one day at a time right now. Thinking too far down the road can be overwhelming. You can do this!! Don't hesitate to reach out with questions.

Hugs,

Kathy

bravepoint

lemonee - Sorry that you are on here but know that there is a wealth of knowledge and support here. I met with the surgeon first. I had a suspicious lymph node on US so knew that chemo and rads would be happening. I did really hope that I wouldn't chemo but I made it through. Once you know what you are up against, it will be easier to get your head around what's in store for you.

mjb1018

Hi there lemonee. So sorry to hear your news. The waiting to get everything lined up is the hardest part, for sure. I'm close in age, 49, and my kids are 20 and 17. Once diagnosed, my first meeting was with a breast surgeon. Since I'm ER/PR negative and HER2+++, she recommended port placement right away as I'd be getting chemo first. That surgery happened the next week. She also ordered BRCA testing (which came back negative, yay!) and an axillary US and lymph node biopsy, if enlarged. It was, and a core needle biopsy was done and came back positive. After that, I met with my medical oncologist to go over everything. The day after that, I met with the radiation oncologist. I started chemo on Friday the 15th. Plan is to shrink the tumor (it's 3-4cm) and have surgery after this first round of chemo. At that time, a sentinel node biopsy will be done to get more info on node involvement. Do you have a copy of your original pathology report? I'd suggest getting a copy. Lots of helpful info will be there for you. Treatment plans differ based on ER/PR and HER2 status. I hope my timeline helps you a little. Best of luck to you! We are here for you!

Georgia1

Hi Lemonee and so sorry your biopsy results showed bc. If it's "grape sized" then you definitely have time for an initial consult and then, if there's a second hospital near you, a second opinion. I started with the head of the breast cancer center, who was a surgeon, and I asked so many questions she got me in with the RO the next week. Then three weeks later I got a second opinion. The fact that everyone agreed on a lumpectomy was very reassuring.

I don't think there's any magic order, but you definitely need to find someone who listens to your concerns and answers questions. And good for you for asking for copies of your mammogram and US reports along with the biopsy report. There's good info in there for you to plan your attack and beat this thing! Best wishes to you and keep those questions coming; I've learned so much from the women here.

EastcoastTS

Lemonee:

Like everyone has said, I'm so sorry you've joined the club no one wants to join. But know that you have found a supportive, understanding group. As you prepare and research, ask any and all questions. We're here for you.

I was 49 @ diagnosis. 10 year old son (I started late!)...so feel for you there, too.

Right off the bat after biopsy results came in, I met with the BS (breast surgeon). Had MRI...then went to 2nd opinion BS, who also referred me to an MO and RO. The 1st opinion BS wanted me to hold on meeting them until after surgery. Maybe because I was HER2- and did not need neoadjuvant treatment. But I wanted to talk to everyone upfront. The 2nd opinion facility set up all appts at once. They made it easy for me. One benefit of a 2nd opinion can be that they will possibly redo the biopsy pathology. Some demand to do it because perhaps they have a better facility or feel they do. If that makes sense.

If you want to go to a larger facility (MD Anderson, Johns Hopkins, etc., etc., etc.) for a 2nd opinion, they are very accessible and can get you in quickly. I was in with MDA in less than 2 weeks. And I talked to Johns Hopkins and they were scheduling in one. (My insurance had both of these in-network, so I only had to consider travel costs.)

I should add that I asked for a copy of my pathology report the day they called me (I had to call back, I don't think I thought of this while they were telling me!) -- and I ran down to the doc office in a mad state and got it.

HUGS to you. I'm sorry this is happening around the holidays. I had that happening at just this time last year.

lemonee

Thank all of you so much for the information and support. I feel like I'm on an emotional roller coaster lately . One minute, I'm up and feeling positive and then the next I feel defeated before I've even started. I'm trying so hard not to talk too much about any of this to the people in my life, other than the need-to-know information,so I'm glad this resource is here.

EastcoastTS

Come here to vent and admit how you really feel. Everything you said is so, so normal. And family/friends try hard but simply cannot understand what this is like.

voraciousreader

register at the NCCN website and read the breast cancer treatment guidelines for professionals. It will be a great starting point for when you begin discussing treatment options. Great idea to also schedule a medical oncologist appoinment before surgery.

Good luck

lemonee

Well, I talked to BS today about my options, and have decided to see an oncologist first and most likely begin chemotherapy with surgery to follow. A lumpectomy would leave me with a lot of distortion, along with loss of nipple/areola. With my family history, I am planning to go with a bilateral mastectomy with reconstruction. I have my initial appointment with the plastic surgeon next week and then with the oncologist the following week.

Now that I know what the next steps are, I'm going to take a break, put it out of my mind and enjoy Christmas! Happy holidays to all of you, and thank you so much for all the support and information.

EastcoastTS

I'm glad you have a plan in place. I hope this allows you to enjoy the holidays.

Take care and HAPPY HOLIDAYS!

Dore

Hello - I am 67 years old and also terrified by IDC diagnosis just received. No further info from biopsy yet like the grade or stage. No one in family ever had breast cancer. I am so concerned with all this terminology and treatments, etc. Have an appointment with local breast surgeon on Friday. Not sure if i should pursue consulting either the Philadelphia Cancer of America facility or maybe sloan kettering in NYC. Both of these are about a 2 hr. drive and how frequently do you have to go for treatment. Oh god. I feel very very old and I cant stop shaking. Thanks for any advice

Sjacobs146

Dore, so sorry that you find yourself here, but welcome. I would wait until you get more information from your local breast cancer center before going for a second opinion. If you have "garden variety" breast cancer, it may be easier to stay local for treatment. If you have radiation, that's typically every weekday for a while. Even though I live in the Boston area, I did not go to Dana Farber, I stayed with Mt. Auburn. I love my docs there, and it's easier to manage than the big cancer center. If you have a rarer type of cancer, or you don't care for your local docs, then definitely consider a major cancer hospital. This probably seems very overwhelming right now, but the outcomes for BC are generally very good. I have friends who are 20+ year survivors

EastcoastTS

Dore:

Agree with Sjacobs. Wait until you get more info, then ask lots of questions here and perhaps look into a 2nd opinion at one of the hospitals you suggested. A 2nd O is never a bad idea.

So sorry you are here -- but the feeling of shock will lessen as you gain more perspective and insight. You'll make it. We all have. Hugs to you.

Georgia1

Hi Dore. If your local surgeon has experience with breast cancer specifically, and you have a good rapport with him or her, that's a good sign. Personally I got a second opinion on everything, so you may well want to get a second appointment and possibly consider surgery in Philadelphia or New York if you prefer the second doctor. That's just a one-day trip usually. But I agree with others that if you then have a daily treatment, like radiation, it will be more convenient to do that nearby.

Do let us know when you get the biopsy results, since size, stage and ER status make a big difference in your treatment options. And you really will feel better once you know what you are up against and have a battle plan. Sending you good wishes.

Beatmon

Remember, a surgeon will always suggest surgery first, when in fact many are helped greatly by preoperative chemo. I think an oncologist is a great sounding board and full of information

lemonee

I'm sorry, Dore. I can't offer any advice since I'm newly diagnosed too, but I can offer prayers and good thoughts. Hugs

moth

Hi Dore and lemonee - just wanted to say hello. It sucks but we're all here for each other. I'm a few weeks ahead of you guys. Got biopsy results on Dec 4, saw my surgeon on the 5th, had surgery on the 12th.

I'll find out my next steps in a few weeks.

Lucyred

hello all. I was just diagnosis on 12/15 with IDC TN. I still have to have a biopsy of my lymph nodes because they found a 1 cm mass on the MRI. So far my plan for treatment is AC-T course treatments for 8 weeks of AC then 12 weeks of the Taxol then surgery then radiation if needed. I just had the genetic testing done yesterday so hopefully that will help with determining or guiding the course of treatment.

Sucks to have to be going through this.

EastcoastTS

Lucyred:

So sorry that you're here but glad you found this site. I could not have made it through without it. As I've said to everyone new who arrives, ask any and all questions. Someone will have something to share. And know that we understand what it feels like. It does get better. I promise.

Hugs.

mjb1018

I must have an amazing BS. In fact, I know I do! She DID NOT suggest surgery first. She was the first one I saw. She explained how chemo first is the best treatment for me. The only surgery she has done is put my port in. I love her. I will see her again in a few weeks. I know surgery and sentinel node biopsy is next. Actually hopeful she won’t have much to do as my tumor has gotten smaller after just 1 treatment.

Hope2018

Hi Dore,

I also just received an IDC diagnosis and I am scheduled to see the Breast Surgeon Jan. 5th.  I am 69 years old and have moments of shaking as well.  My head went into brain freeze after the phone call.  

I am fortunate to have a brother that is a Dr. and I am taking him with me for 2nd ears.  I would suggest bringing someone with you during the initial consultations.  I know myself that my mind is not absorbing all the facts and can get easily confused with the process and information.  So, if you have someone to take with you I think you will feel better that someone you trust is digesting the info with you to discuss. I am hopeful that down the road we will look back and say it wasn't that bad.  

I might ask for some meds to relax me during this process.  I am not a drug taker at all.  I don't even like taking an aspirin for a headache but now it might make sense to think about it.   Yoga and meditation might be another solution.  Take care of yourself.  You have many more years to go.