Newly diagnosed, confused and overwhelmed

Catob1969

Good morning,

I am newly diagnosed with iDC(invasive ductal carcinoma).3.8 CM right breast.

I have had two ultrasounds, and MRI and a core biopsy.

I met with an oncologist on February 20 who recommended that due to the size and a recent *concerning* PAP smear, i see an ob-gyn surgeon who deals with all women's cancer types.

I had blood drawn, and am E/P positive and HER2 negative, BRCA 1 and BRCA 2 negative.

They have sent out oncotype testing as well.

I went to the surgeon and had a culposcopy.

I meet with the ob-gyn surgeon tomorrow 3/12/19 for results of the culposcopy, treatment needed or options and more discussion about the breast tumor.

I was also asked to speak with the medical oncologist at the breast center to determine two things:

1. Should we do neoadjuvant therapy to shrink the tumor before surgery?
2. What kind of therapy (before or after) am i able to receive as I also have an autoimmune disease. I take immuno-suppressants for that. There for immuno-therapy may not be an option.

My head is spinning, I can't even say for sure what stage I am because they are planning on doing the node biopsy when they do the surgery.

This feels like some sort of weird limbo.

I see the medical Oncologist on March 27th and have more questions than clear thoughts.

Is there anything specific I should be asking him?

I feel like I am in a tunnel and all i can hear is bits and pieces of information,

Catherine

Beaverntx

Catherine, don't know if you usually make written notes at doctor's visits or not but now would be a really good time to do so. You have a huge amount going on just now so no wonder your head is spinning!

Both taking a list of questions you want to ask to each visit and making notes during each visit are really good ideas. Even if you are hearing and understanding what is being said during a visit, I can almost guarantee that you won't remember all of it without some notes. I learned that as a young mother when one of the boys was sick -- the doctor's instructions were perfectly clear until I got home and tried to remember the details.

Your ob-gyn has already given you some questions to ask the MO; perhaps you could check with him or her if you should be finding out anything else?

Of course you feel like you are in limbo because you are waiting on lots of information. Generally once a treatment plan is established and is in progress that feeling gets better. Your situation is complicated by your autoimmune disorder but it looks like that is being taken into consideration in developing your plan of treatment.

Sending hugs your way as you gather information and make decisions over the next few weeks. Welcome to the club no one volunteers to join but know there is lots of support available here and if one of us can't answer a question it is highly likely that someone else can. Keep in touch, please.

Moderators

Dear Catob1969,

We are sorry for all that you are doing through and so glad that you reached out to our members. Please know that this community can be a source of support and information as you move through the process of getting answers, figuring out treatment options, making plans and moving ahead with treatment. Your description of only hearing bits and pieces of information sounds completely normal and how most here would describe the beginning days of learning they had breast cancer. It often seems like our brains can only take in small amounts of information at a time. We agree with the advice of Beaverntx that you might consider taking a list of questions with you and we might add that you take another person with you too. It helps to have a second set of ears and someone who can take notes. Here is some additional information on Tips for Communicating with your Medical Team. Here is a link to some questions to pose about Chemotherapy. We hope you will stay active here. We are sending you warm thoughts and good wishes and ask that you keep us all posted on what you learn and how you are.

The Mods

Spookiesmom

Write your ? as you think of them to take with you. Can you take someone with you as another set of ears? Or ask if you can record the visit. Be sure to take a list of meds you’re on.

WorryThePooh

It is not surprising at all that your head is spinning. I agree about taking someone with you if you are able to. I took my husband because I realised I was so overwhelmed at the start I would miss things they said. He would often tell me at home "they said this" and I couldn't remember.
Best wishes with everything, you've found a very supportive place here.

Catob1969

I appreciate all of your ideas and I deeply want to thank you all for being here for me to vent

Denise-G

So sorry - you are in the worst part right now - knowing you are diagnosed, knowing only part of the story, and not having a plan in place.

Definitely, take someone with you. I did not and regretted it so much because your brain goes numb and just stops! When my mom and sister were diagnosed, I was the note taker! Much better!

You can and will get through this. I also regretted not asking for an anti-anxiety drug temporarily. Based on my experience, my sister did, and it helped her in those overly intense times.

All my best wishes!