30 yrs old, IDC Stage 3, 3cm, ER+ PR+ HER2-

jesnort5

Hi all! (Edit: Not stage 3, Grade 3. I can’t edit the title?)

I'm new here. I was diagnosed a week ago after having a lumpectomy for a “fibroadenoma." They skipped the needle biopsy because I'm 30.. My breast tissue is very dense and they couldn't see much on the mammogram. Because they thought it was a fibroadenoma, they didn't check lymph nodes and left positive margins. I had bloody discharge and a nipple pulling inwards and they STILL told me I was too young and it would be benign.

Now my question.. I have a lymph node that is tender (something I also mentioned at the mammogram). It doesn't feel hard though. For those of you with it in your lymphs, did they feel tender and a bit swollen? Also, will they be seen on scans or is surgery needed? I'm anxious about that and have to wait a week.

They're telling me I'll probably need chemo because of my age. If it hasn't spread to lymphs, is this true? Mastectomy has been recommended. So glad to have found this group! Thank you

ellientta

Hi! I'm sorry to hear your news. I know how hard the waiting is.

I don't know if my experience will be helpful for not (grade 1, 1.2 cm, er+/pr+/HER-). In terms of the lymph nodes: I'm 39 with extensive lymph node involvement and the lymph nodes are all stuck together. I'll tell you that I could feel nothing in my underarm area (nothing hard, nothing tender), but it is very obvious on the ultrasound. It also showed up clearly on the MRI and CT scan. Based on my experience, I would say that imaging tests may show whether or not you need a biopsy. If you have a mastectomy, they may also do a sentinel node biopsy during the surgery.

Did anyone suggest genetic testing? I have no family history of breast cancer or ovarian cancer, but because of my age, genetic testing has been recommended. My situation is different because of the extensive lymph node involvement, but the recommendation that I received is chemo, bilateral mastectomy, and radiation in that order. I was told that the aggressive treatment has a lot to do with my age.

Shellsatthebeach

I had it in my lymph nodes. It showed up in my Pet scan. My doctor said I had locally advanced cancer and the left side of my breast area was very diseased (stage 3). The doctors could also feel under my arm and noticed something. I sure didn't notice it. The good news is chemo works best on high grades. You will most likely receive chemo even if not found in the lymph nodes. I wish you luck.

Salamandra

Hey jesnort,

I am wondering where you're getting seen, and if you can get a second opinion from an NCI designated cancer center before proceeding with any more treatment.

Chemo is more likely to be of benefit for grade 3 cancer in a young person with a tumor >2cm. But if you were node negative then at least the place where I was treated would have run the Oncotype test.

I'm angry on your behalf at your current treatment team, and I would definitely be exploring other options.

jesnort5

I know, it has been so frustrating! It’s hard to not feel safe with your team when it’s your life on the line. At my last appointment we let them know how disappointed we are with how things have gone and voiced some concern about trusting them moving forward. We have been trying to get into Huntsman Cancer Center and were able to get an appointment!! It isthis next week. We’re definitely planning on switching over if the appointment goes well.

jesnort5

Thank you!!

buttonsmachine

Jesnort, I'm sorry you are in this situation. I was diagnosed a few years ago when I was 32. Long story short - I would like to emphasize what Salamandra said - please get an opinion from an NCI designated center before you do anything else! See: https://www.cancer.gov/research/nci-role/cancer-centers/find

If you can't get to an NCI center, at least get to a university hospital near you. You need input from a whole medical oncology team before you proceed. Young women with high grade breast cancers are in a unique situation, for many reasons. You are in a critical window to handle this effectively, and I want you to see the best doctors you can.

Sometimes they do chemo first to see if your cancer responds, and sometimes they do surgery first. It depends. You also may need some additional imaging or scans before they do anything at all. In short, please get another opinion before allowing them to do a mastectomy.

When you do call, tell them that you are young, that you've been diagnosed with breast cancer, and that you are seeking a second opinion. Sometimes they can get you in sooner on an urgent basis, rather than waiting as a regular new patient.

As for your original question, yes I had tenderness in my lymph nodes, but it's impossible to say if what you are experiencing is due to having positive lymph nodes or not.

I hope that helps. We are here for you. Hugs and best wishes to you.

buttonsmachine

We were typing at the same time. I am SO relieved you got an appointment with Huntsman Cancer Center. Yay!!!

Beesy_The_Other_One

Jesnort, I'm thrilled to hear you were able to get an appointment with an NCI Hospital! Where you are treated and how you are treated first really does matter. As I said on a different thread earlier today to another newly diagnosed woman, one of the hardest parts of having cancer is having to advocate for yourself when you're in the most vulnerable state of your life. If you need someone there to be pushy for you (to ask HOW FAST can we start chemo?), don't be afraid to ask, and ask your pushiest friend! As I told the other gal, if you lived in Houston, I'd go drive your oncologist crazy like I did mine!