just diagnosed - seeing surgeon tomorrow

So sorry you have been diagnosed. It is a lot to take in. If someone can go with you to the appointment to take notes it would help or take notes yourself.

I had double mastectomy even though only one breast involved. I would have been fine in a couple of weeks to attend a wedding but you will have to ask the surgeon about timeline and surgery planned before you can decide. I think they usually wait about 4 weeks after surgery to start chemo unless your chemo is happening before surgery. Some people breeze through chemo and others have side effects but if you time it right. Chemo is often done 3 weeks apart and there are times in those 3 weeks when side effects are minimal.

It would help if you enter your information from your pathology report in the profile to get more answers here.

I was 66 at diagnosis and was told that if it was genetic I (or one of my sisters) would have had breast cancer at a younger age. One sister paid to have genetic testing done anyway and she was negative. My daughter didn't qualify because of my age. I would ask your doctor what they think about that.Hopefully someone with more knowledge will be along. It is quiet here at night so you will get more answers tomorrow.

Wishing for a smooth ride for you or as smooth as it can be. Take care of yourself.

kmb4, sorry you found yourself here. I would suggest taking a trusted person with you to your first appts to help take notes, etc. Do you have a family history of BC? Your MO may order a BRCA genetic test. Men can carry the gene as well. My biopsy showed a Grade 3, but surgical pathology Grade 2. There will more than likely be more testing before a treatment plan is in place. I'm not sure of recovery time for a BMX, but if you do chemo, there is a guideline that chemo should start within so many weeks of surgery to be most effective...I can't remember what it is. You will probably feel like you are on a roller coaster ride, if you don't already. Hold on tight and don't forget to BREATHE! Gather all information necessary to make informed decisions. Best wishes.

The most significantly encouraging factor in your Nottingham Score (which determines grade 1, 2, or 3) is that your cells tested “1" for mitosis—which means they are slow-growing. You don't know your stage yet, because that depends on the tumor's actual size (which can't be determined until it's removed) and degree of nodal involvement (which you don't know till your nodes are biopsied). Sentinel node biopsy is the standard: a dye and/or radioactive tracer are injected shortly before surgery, and the first node(s) between your tumor and your armpit that stain blue or “light up" with the tracer are removed and biopsied to determine if they contain tumor cells. Your stage and tumor biology will determine whether: you will likely not need chemo (the risks would outweigh a small if any benefit); you will likely need chemo (and despite the “good factors” of a high ER percentage and negative HER2, a low percentage of PR staining indicates a slightly more aggressive tumor than one with a high percentage of staining of progesterone receptors); or you fall into a “gray area," either because of a tumor >1cm, weak hormone-receptor staining, grade 2 or 3, and 1-3 positive nodes. It is that “gray area" for which the Oncotype DX test is ordered—a score of 17 or less indicates that chemo's benefits would be too small—when added to hormone (endocrine) therapy—to be worth the risk. You might want to ask your surgeon if you have large enough tissue samples to do an OncotypeDX now (based on your tumor being only weakly PR+). OncotypeDX is an example of “genomic" testing, which tests the genes of the tumor, not those of the patient. Because of my tumor’s size (1.3 cm) and grade 2, I was in that “gray area” so my tumor was Oncotype-tested. It scored a 16, so chemo was not recommended (especially at age 64).

Genetic testing? What's your family history of breast, reproductive, stomach, colon, pancreatic and melanoma cancers? (What “degree" of relative—first or second is concerning). And what's your ethnicity? I have no family history of those cancers on either side, so I didn't think it important to mention my Ashkenazi Jewish ancestry (both sides) to my surgeon. In the interim between my lumpectomy and seeing my MO for the first time, I read in Dr. Susan Love's Breast Book that regardless of family history, if an Ashkenazi Jewish patient (or a patient of other ethnicities with low rates of intermarriage in which certain mutations are more common) has a breast cancer diagnosis, genetic testing is recommended, maybe even imperative. I told my MO, so she immediately ordered genetic counseling—a prerequisite by insurers before testing. I tested negative for the known mutations, so none of my first or second-degree relatives needed to be tested.

Because your tumors are multifocal (more than one) and there is also DCIS present, your surgeon's recommendation of a unilateral mastectomy with or without reconstruction is a sound one. But whether to get a bilateral mastectomy (BMX) is strictly up to you. If you do test positive for mutations in your BRCA-1 or 2, PALB-2 or Chek-2 genes, then a BMX is the prudent way to go because you would be at greater risk of contralateral (other breast) bc. And it's usually (but not always) easier to achieve symmetry when both breasts are reconstructed rather than just one (and augmenting the “normal" smaller one to match). But MX is forever, so think long and hard about removing a healthy breast that is not dense and not at genetic risk. Yes, most women who choose MX can avoid radiation—but usually not if cancer is found in the nodes or close to the chest wall. No breasts=no more mammograms, and some women find followup mammos very stressful. So if “peace of mind" is a motivating factor, be aware that though the odds of achieving it via BMX, it's never guaranteed.

Keep - I'm so sorry. I know it's hard. There's no way around the fear. Educating yourself helps - to a point. Even that can be anxiety provoking if on overdrive.

Take a big breath. IDC of 1 cm, Grade 1, HER2 negative, hormone positive - those are all encouraging in a highly treatable way. In some ways, you're right - your life will never be the same. But in lots of ways - you'll get back there. It takes time.

Gather opinions. Seek experts. Surround yourself with support. And keep moving forward. You can do this! And it's okay to sometimes feel like you can't.