What to expect with macro metastases in lymph nodes?

Ammie

Hi sisters. I had a lumpectomy and SNB last week, and found out today that macrometastases was found in all 3 sentinel lymph nodes that were taken. What was originally thought as DCIS in the palpable tumors that were removed, turned out to also have IDC. The largest IDC mass was 2cm. Now I have to get a PET scan.

On 3/19 I’ll be getting a single mastectomy, axillary lymph node dissection, and also a lymphovenous bypass procedure.

I’m not afraid of surgery itself, but terrified of what to expect and what comes next. I don’t even know what will be involved in the pet scan yet.

brittonkb

Ammie - I had three positive nodes discovered during my lumpectomy as well, one with extranodal extension. I then had an ALND (also with the lymphovenous bypass) to see if any further nodes were positive. Before my ALND they did run scans just to rule out any further spread. I had CT and bone scans which did not show anything and my remaining nodes ended up being negative. But still was recommended to have chemo and also radiation. Since I had a lumpectomy, my radiation was both to the breast and the nodes. With a mastectomy, I would think the radiation would be to the nodes only but not sure? Certainly not what I expected going into it, but not as bad as I expected it to be (neither chemo nor radiation).

moth

Ammie, well that sucks & I'm sorry things are a bit more serious than you expected at first. Big change in your dx from DCIS to IDC and the stage is obviously changed too.

The PET scan booking people should give you good instructions to prepare. Here's a quick BCO article on PET https://www.breastcancer.org/symptoms/testing/type...

For the scan itself you'll just have an IV and lie down on a bed and it's just boring. But there are diet & exercise restrictions before PET scans so make sure they explain those to you.

I would expect your oncologist will recommend chemotherapy for you so I hope you can get your mind ready for that. Hang in there. It gets better & you can get through these treatments!

2019whatayear

The worst part about the PET in my opinion is you do a low carb diet the day before! the instructions are basically little physical activity 48 hours before the test. low carbs day before and a few hours of no eating and then you go and they inject you with radioactive dye, and then you sit for a while and then you lay down and they scan you with a machine that is more like a CT than an MRI so less claustraphobic. Don't wear metal. It's a lot of laying around really. I think they try to get the results to you and your provider asap. Depending on what your doctor says you'll probably be recommended for chemo and radiation and we are all here to help you through that.

Sorry you got bummer news after your lumpectomy

ajminn3

Hey there! I honestly felt like I was reading my story here (even down to the name- I’m an Aimee ). I was diagnosed similar to you about exactly a year ago from your date. I had a BMX to remove a large palpable DCIS mass and had 1/3 sentinel nodes with a macro met. My treatment plan following that went off of the macro met (couldn’t find the IDC within my DCIS), which came back er/pr+ and her2+, which sent me down the “marathon treatment” path. Before chemo I did have a PET/CT but I don’t recall to many specifics leading up to it? The process it’s self was fairly easy, it’s just the waiting for results that I found so hard. Mine came back “clear”. I did 6 rounds of chemo followed by a year of targeted infusions, 33 rounds of radiation, and now ovary suppression/estrogen blockers for 10 years. It’s not a walk in the park, but now 1 year out I’m feeling generally good and trying to focus on the day to day. Wishing you the best- this forum is such a great resource for information and support!

Redcanoe

Hi Ammie, I am so sorry you are here with us. I found myself asking the same question in December. I thought I was node negative and then 2/5 of my sentinel nodes came back with large macromets. It was a huge shock and I took it harder than the initial diagnosis. The testing and everything after was extremely stressful but now that I am settled into chemo, it has become easier mentally. I also went on an antidepressant and it has helped me enormously. On the stage 3 forum, there are threads with stories of 15+ year survival and I have read them all. People survive macromets. There is hope. Sending you love while you get through these next few weeks.