invasive ductal carcinoma.....what now?

Hi Annie -- sorry you hear you received confirmation that you have IDC.  You will get through this, but its going to take some time.

When you meet with the breast specialist (assuming that's a surgeon), he/she will likely go over the next steps in the plan.  You might ask him/her to provide you with an expected timeline.  A lot of women do surgery, then chemo (if required), then radiation (if required), then hormone therapy (if required.)

If you end up having a choice re: lumpectomy vs. mastectomy, I would encourage you to read the threads on this forum.  Lots of good discussion there to read and listen to your body/gut as well.

The percentage of women diagnosed with breast cancer evident in other organs at the time of initial diagnosis is small -- like 5-6%.  Some centres check for spread and some don't upfront.  Find out what your centre does. I understand that its impossible not to worry about, and if you are like me, everything in my body started to hurt when I was fine before!

Good luck -- come back with your specific questions.

Ridley

Hi AnnieeC,

I'm sorry to hear of your diagnosis. I also had IDC and Her 2+ in 2011. My tumor was over 6cm and had spread to my lymph nodes. I went through 6 rounds of chemo, rested a month, had a right mastectomy, rested a month, radiation, rested a month, then resumed another 7 rounds of one of the chemos. Just last Monday, 10/7/13, I had a left mastectomy for prophylactic reasons and began stage 1 of reconstruction. My reconstruction was delayed due to my staging (Stage 3c).

I believe, as it was in my situation with my team of physicians, once you've been diagnosed it's up to you whether or not you have 1 or both breasts removed. I agree with you on not wanting a "partial" mastectomy. That would scare me to death. But let me tell you, as advanced and spread as my cancer was, I STILL SURVIVED. I kicked butt and won. With prayer, family, friends, and tons of support, I beat it. I have been cancer free for 2 years now and I believe with all of my heart that I will continue being cancer free for the rest of my life! 

Ask as many questions as you want. This is your life and you only have it once to live so ask away! The best fighters are those with answers and the only answers come from those who ask. I even asked my oncologist, "Am I going to die?". She smiled very sweetly but boldly said, "Not on my watch". I would ask the craziest questions and she would answer them the best she could. She never left me in doubt of what was going on, what was next, and what I should expect.

So I said all that to say this: you ask every question you think of. If you don't get the answers you need, not want to hear, but need, find another team. You deserve the best.

Take care and God Bless You!

Bethany

Annieec, 

I am so sorry you are here but you will get thru this. I was also diagnosed with IDC in 2011 and chose to have a bilateral mastectomy. While I know things seem scary right now, please know that it is never as bad as we anticipate. I was nervous starting treatment but found it much easier than expected. I had surgery and am now taking Tamoxifen.  Totally agree with Babyswim about the treatment binder and recommend taking a friend or family member to the initial appointments. You will be given alot of information and will likely only retain a third of it. Take your moments as needed and reach out with any questions as need be. 

Sending hugs.....

Some of the other info you will receive is whether your cancer is estrogen or progesterone receptor positive or negative, and whether in is HER2 positive or negative. This helps with treatment planning. In terms of spread, they will likely do something called a sentinel node biopsy when you have your surgery - they take one or more lymph nodes to see if the cancer has spread. You won't know that until after the surgery. Talk about everything with your doctors and don't rush into anything. Mastectomy and lumpectomy + radiation are equal in terms preventing recurrence. Good luck on this journey.

AnnieeC, I think you are ahead of the game just because you can express yourself. I think it helps so much as far as emotional health goes. We are all nuts from our diagnosis but some of us get stuck in "scared stiff" and shut down. I think it is good that you have come here to share how you are feeling. It is good for you and good for us to read.

I thought "grade" was based on the tumour size and "stage" was about whether it was contained or not? I think that was what the surgeon told me but i may be remembering it wrong.

grade has to do with the characteristics of the cells, lower grade means the cells are dividing at a slower pace, among other things.  Stage is based on tumor size and spread, if any, of the cells to lymph nodes, other organs, etc..

Hi

I can hear your anxiety and relate to how you feel as I am two weeks out from surgery myself for invasive ductal carcinoma. Waiting to start radiation and the results of Oncotype DX.

That first phone call telling you that its cancer and its invasive gives you just enough information to get the wheels turning and needing to know more. The initial pathology and tissue samples are small in size and may not tell the whole story. As one of our posters said- the world wide web has a lot of information (good and bad) approach with caution haha

The "I don't know yet" is hard to hear too. My surgeon was pretty direct and said until you have surgery some things are our best guess and we won't know til I actually get in there.

I am fortunate to be part of a health plan that provides fantastic care and resources. They gave me a binder on my first visit that had tabs for me to put any test/pathology results, lined pages to write questions, phone numbers and names of everyone on your care team. Its great being able to email all my physicians, read research articles they send etc. If you don't have that where you are at-search Mayo Clinic and other world class health systems- they put an amazing amount of their stuff on line for anybody to read.

Once I actually got the full details of my treatment plan I started coming here more and searching one specific topic at a time in small doses. I am an RN and worked in surgery for years - I needed to act like a patient not the nurse

I hope you come back when you feel you can- sometimes its too overwhelming other times you need to be here. Its a great support community. I wish you all the best on your journey- one none of us would have chosen but here we are.

AnnieC here is a link about being positive. I found it helpful.

http://www.cancerlynx.com/sadness.html

AnnieeC what you are feeling is so normal and this is the hardest part. As soon as you get a treatment plan you will feel you have the ammunition to FIGHT this and WIN! Right now you have been put against enemy line without any back up. Of course you are scared. I was also waking up in the middle of the night crying, but as soon as I met with my oncologist and very reluctantly asked the dreaded question (which I could barely get out) "can I survive this?" she made me realize that yes, with the treatment plan she had devised, we could beat this.

I was like you in that as soon as I heard I had BC, I wanted a MX. My BS kept saying that there was only a very slight survival difference between LX and MX and that because of where my tumour was located, I was a very good candidate for LX. In a way I was lucky because I needed to have neoadjuvent chemo first, which allowed me lots of time to research my surgery options. I ended up having a LX and feel good about this decision. Make sure you make a list of all questions and it helps if someone can go with you to remember the answers. My DH went with me to find out biopsy and plan and we both decided that neither of us would probably remember all the answers-so we brought along a tape recorder!

I know you will feel better when you have all the info. We all go through so much with this DX, but everyone here is so supportive, so come back and know you are not alone. One last tip that my aunt gave me when she heard of my DX. She told me she started a grateful journal which helped her live for each day. I got a journal app on my ipad and it allows me to post pics. Some days it has been hard and all I can record is a pic-but it has really taught me to live for the day. I was always one to live for tomorrow-no longer!