IS THIS NORMAL?!

GinaDexter1982

Hi,

I'm asking some questions about my mom. We are waiting on our second opinion but I am so confused and I hope to unmuddle my brain.

So my mom is 60. She had two lumpectomies, one to pull out the tumor and a re excision lumpectomy. She has IDC and DCIS.

The IDC tumor was 0.8 cm.

DCIS is seen all over her breast but it is soooo small that the doctors are having a hard time seeing it, yet they know it's there. They have been floating a mastectomy at her.

Lymph nodes were negative. She had a special MRI before her first surgery in early November and there is no sign of cancer in the rest of her body.

She is ER/PR positive, HER2 negative.

Her Oncotype came back at a 36, which from what I gather, it is only a few points above where it could have been a 'flip a coin' kind of thing on whether to get the chemo or not.

My question is, is all of this normal? Because she's had an oncologist, a radiologist, and a surgeon all looking at these results and they are flabbergasted on why the Oncotype came back kinda high. And we are getting the second opinion in a few days so what if this all comes back that these new guys are just as confused?

AND I have the copies of the pathology report. The first one put her tumor at exactly 1 cm and at Grade 3 while the DCIS was at Grade 3 as well. And then the updated report came back, which put her tumor at 0.8 cm and dropped it down to a Grade 2. Is that normal too? Am I making sense in all of this? I am so confused!

Edit: Oh and the Oncotype results got delayed TWICE. First time it didn't get done and the second time, the insurance company was holding it hostage. Should she get another test done if the doctor agrees with her just to be sure?

mustlovepoodles

There is no "normal" when it comes to breast cancer. Breast cancer comes in many styles and flavors. It's like snowflakes --no two are the same.

Your mom's stats appear to point toward early stage. The invasive part is very small, less than a 1/2" and it is ER+PR+Her-, which is the most common and most treatable type.

As far as the Oncotype goes, I would see no need to do it again. I highly doubt that insurance would pay for the test twice, anyway. At 36, the Oncotype is well beyond intermediate level. I would expect that your mom is going to be advised chemo, for sure. Perhaps they can explain to her why a mastectomy would be better than lumpectomy plus radiation.

GinaDexter1982

I was surprised when the O Dx came back kinda high because everyone we spoke to at the cancer center all said they expect it to come back low since the IDC was so small and her nodes were negative. Maybe they were just BSing us. I guess the score points to something small dancing around in her body that could come back to bite her in the future if she doesn't do the chemo? And one more question before I stop bothering you, the docs have all recommended she get genetic testing done after we get our second opinion. Is that the BRCA gene? Thank you.

mustlovepoodles

There are some genetic tests that only test for the BRCA genes, which are the better know types. There are other expanded tests that look for the more rare gene mutations.

I had the expanded test because i have a very bad family history--19 cases of cancer in 1st & 2nd generations! Turns out I have PALB2 & Chek2. They cause breast cancer, plus colon, pancreas, lung, uterine, and thyroid cancer, all of with we have in abundance.

I'm glad I had the test. Now I will have increased surveillance of my chest, thyroid, and GI tract. My RD was also found to be positive for both mutations. She was immediately put on breast surveillance and will be offered preventative treatments, including surgery, in the future. I wish I had known about my gene mutation. I could have had preventative BMX and bypassed a while lot of trouble.

farmerlucy

I have seen some women on these boards get the Mammaprint test when facing the chemo decision. Maybe ask the doctor about that. Sorry for the dx.

GinaDexter1982

Update - we finally say the oncologist today and he is TICKED OFF. My mother had her surgeries at a different hospital and no information is being passed back and forth. He had to take the two pathology reports I had brought and make copies of them because he didn't have his hands on a hard copy.

He told my mother today about what's to come and he seems to be really pushing for a mastectomy. He said with a mastectomy and the 20 weeks of taxol after it would lower her recurrence chances of over 10 years down to 10% along with the tamoxifen pill. Without chemo, then her chances would be at 25%. She's 60, soon to be 61 and he said to her that she is still very young and he wants her to do the chemo and surgery so she doesn't have to worry about this much down the road. He also left the 'no chemo' option on the table which she may consider and there's nothing I can do about that. Is 25% over ten years considered low? It was higher than he liked but what do you ladies think?

We are going to see a breast specialist in PA (we're in NY) sometime next week and then if my mom decides to do the mastectomy I guess it will happen right after that. i asked the doc about how long after she will be having chemo and he said that her healing time is 3 months. IS there any chance any cells could be bouncing around in there and make a landing? Sorry for asking all of this, he was rushing and I didn't get to ask all my questions. She's still getting her second opinion on Tuesday and hopefully I can hold this doctor down long enough to answer everything.

MinusTwo

Gina - there's always a chance for cells to bounce out or around. But I think your mother's MO has given you a reasonable plan. He's right, your Mom is young. I had a BMX (double mastectomy) and reconstruction; and then both chemo & rads at age 69.

GinaDexter1982

Hey thanks MinusTwo,

She's finally getting her second opinion on Tuesday (so many delays in this process) and then we will go from there. She plans on coming onto my account on here and chatting so expect her sometime soon.