New here...overwhelming! So much information.

dusterella

Hi all.  I am new to this forum area, as I was just diagnosed with Triple Negative Invasive Ductal Carcinoma (literally just found out about the IDC on May 7th, and the TN today, May 16th).  I'm not sure what my treatments are going to be, as they are at this minute testing for BRCA genes, etc.  It will be 3 weeks before we know those results, but I'm thinking we will be going with double mastectomy followed by chemo. (at least that's what my Breast Surgeon discussed with me today - I have yet to see an Oncologist, is that normal?)

Anyway, I'm 34.  My mother has fought breast cancer twice, once at 47 (mastectomy/chemo) and again at 59, in the other breast (mastectomy/chemo)...both times ER-/PR-, HER2+. My grandmother (mother's side) had colon cancer, and my great-grandmother (father's side) died of lung cancer that had metastisized from breast cancer.

I guess my main question is where is the best place for me to start researching all this, making sure I'm getting the best treatment for my case, etc? They are telling me that surgery first is the best option, but what about chemo before surgery?  Doesn't that work well sometimes for aggressive cancers such as these? They can't pinpoint the exact size of my tumor, but they believe it's anywhere from 2cm to 5cm. They say they won't know the stage or whether nodes are involved until after the surgery.  I will be getting a breast MRI (of both breasts) at some point in the next couple weeks as well, but that's basically it until the surgery date.  

Is waiting a month going to be detrimental? I feel like it's grown so big, so fast, that waiting is scary!  I found the lump myself on April 10th (I do regular self exams and had never felt anything before that), and I feel like it's already grown a bunch since then - but perhaps that is me just being paranoid?  I read over a few of the threads in this forum, but we all know every tumor is different!  

Think I will call to ask to see the oncologist as well, just to be on the safe side. 

Luah

Dust: So sorry you're dealing with this, especially as such a young woman, but you have found a good place to be - the ladies here will give you lots of insight, inspiration and support as you're going through treatment. Two sites you might want to visit for TN information: http://www.tnbcfoundation.org/ and http://hormonenegative.blogspot.ca/positives 

I think most of us did surgery first; but chemo-first is becoming more and more common. There are 2 benefits to chemo first. First, it can shrink larger tumours, so a Lx maybe possible... although if you are BRCA+ and thinking of a DMx, that doesn't really apply. The other benefit is so docs can see the chemo's effectiveness (tumour shrinking) and switch courses if necessary. Some people feel better getting on to chemo to stop the risk of spread... and some feel better about getting the damn disease out as soon as possible. It may be a toss-up. 

It's good to consult with an onc as soon as possible. Your onc can lay out the options. It sounds like waiting for the BRCA results will put any surgery 2 months out from first detection - which can seem like a long time to wait. (fwiw, my surgery was almost 2 months out; it's not highly unusual). You may want to ask: What are the risks of waiting (as a young, possibly BRCA+ woman)? Would it make sense to start with chemo first? Can the test results be accelerated? Would 2-stage surgery make sense? Or 2-stage chemo? 

Wish you well, we're here for you! 

dusterella

Thanks for the helpful post - many great tips here.  I will be calling to see if I can get referred to an oncologist today.  So much paperwork already!!!