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Invasive Ductal Carcinoma (HR+PR+HR2-)
I was diagnosed with Invasive Ductal Carcinoma (HR+PR+HR2-) with Mucinous Features on 4/25/2025. I am 57 and have always been healthy up until now so this was a major shock for me, I know I am not alone. My surgery is sched for 5/27/2025, I am leaning towards double mastectomy and since I am trans this aligns with my gender. However, I am highly squeamish and have low pain tolerance so I am not sure if I can withstand the pain so would opt for the lumpectomy; however, I want to give my body the highest chance it won't come back so I believe a double would be the way to go.
I was up on my medical appts and mammos were all clear. I was not due for my next mammo until this Nov 2025 so I don't know what I could have done to catch it earlier. I felt a lump in my left breast while showering in March 2025 and sched an appt with my PCP and then was referred to the surgeon (had to wait a couple of weeks for that).
I couldn't stay still for the lymph node biopsy but somewhat tolerated the breast biopsy. Doctors are telling me I can do the lymph node biopsy in surgery. The first doctor said that one or two of my axilla lymph nodes have 2 4 mm nodes on them; but then the second doctor didn't necessarily think so and that the 2 lymph nodes in question may only be "reacting" or "angry".
I completed my CT scan and bone scan and they came back negative.
Since the CT scan and getting injected with the contrast agent, my neck lymph nodes are swollen. I am very fatigued and seem to need a lot more sleep. I am used to doing a lot of cleaning and maintenance around my house so now I can do about 1/2 or less with a lot of struggle. I reported this to my surgeon. I don't have an oncologist assigned to me yet.
I am also feeling constant pressure in my left breast and my left armpit. I am not sure if this is the result of the biopsy or is it the cancer hurting?
Has anyone experienced swollen lymph nodes on both sides of the neck after the CT scan? Or is this related to the cancer infiltrating more lymph nodes? I am very concerned. My tumor is Grade 1 and the surgeon said it was slow growing. Could my tumor travel that fast even if it's slow growing?
Any comments or help is appreciated. I am really struggling and crying a lot.
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I'm sorry you are going through all of that. My tumor was a grade 2, and because I chose to get a lift and reduction, it took them about 8 weeks to schedule me. I was going crazy waiting to get it on the books. When I finally said I'd just get the lumpectomy, they miraculously found an opening for both surgeons. When they took out the tumor, it grew from 14 mm to 23 mm. (Stage 1 to Stage 2). So, I would imagine your grade 1 tumor will grow slower than that. I wonder if you are having a reaction to the dye when you had the contrast done. I'll be thinking of you and sending positives vibes your way.
This is probably one of the most frightening things you have ever faced in your life. Speaking from experience. The first thing you want to do is go see an oncologist BEFORE you see a surgeon. And wait for the biopsy results from the outside laboratory. The initial Labs results are from the facility where it was performed. A more specific and accurate lab results will be included in your records by the outside laboratory. It will be listed as an addendum of your initial report. Have an oncologist look at and explain the results before making any decisions. I think it's completely insane that you aren't referred to a cancer specialist (oncologist) prior to making a surgical decision!! I don't know why do that? Shouldn't you see a cancer specialist that's going to tell you all the details of your situation before you make a decision on how to proceed with your treatment, whether it be lumpectomy or mastectomy. Why would they send you to a surgeon before you know exactly what you're facing. That is just ass ways backwards. Believe me! I didn't find out about my real / accurate diagnosis until after my surgery when I was sent and referred to a oncologist. He looked at me and said really? You got a lumpectomy? With your extensive pre-cancerous lobular and ductal cells throughout your breasts? I was in shock!! OMG...my surgeon never mentioned it.