Thirty two years old breast cancer patient
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Hey all! Posting this mainly to vent but would love any comments or opinions on whether my expectations are wrong.
32 years old, found out the lump in my right breast is IDC with DCIS ~1.5 weeks ago and I just had my first appointment with a surgeon yesterday. The tumor is around 10mm. No lymph node involvement from what they've seen during the ultrasound and biopsy appointment. ER/PR +, HER2 low (+1)
Going into this appointment I was already worried because my insurance has been so unhelpful. I switched regions within the same insurance but it's caused a lag in information transfer, so my doctor didn't actually have full access to my biopsy/ultrasound information and images. I had to tell her myself what my receptors were and prompt her to look a little harder for the images (they were in the system but required some extra searching). Not necessarily her fault but still, it felt like way more could've been done on their end to gather info for my first meeting. I had already been chasing people down and calling both regions last week to get this information shared but nothing happened.
As for her rundown, honestly, and maybe it was because she didn't have the images to study beforehand, everything felt so surface level and impersonal. Everything she told me was stuff I already read in the last week. Hardly anything she said felt tailored to my situation, lifestyle, and thoughts. She was very sweet and answered any questions I had, but she didn't really help me weigh in on the pros and cons of the choices I would be making.
What's next for me is an MRI that will be scheduled hopefully today or tomorrow and bloodwork for genetics testing. And any more communication would just be over the phone or by messaging and I wouldn't see her in person again until the surgery (potentially in 2 weeks). I actually haven't even had a mammogram but it seems like they'll do one the day of surgery.
One positive though is that this doctor only does breast surgeries - that's her speciality. So that makes me feel better. However, when talking about the lumpectomy (still not 100% sure that's what I'm going with but that will be decided after the MRI and genetics), she did say that there would be hollowness in that area and it wouldn't look the same. I guess from reading on here, some women have had surgeons that not only remove the tumor and surrounding tissue for clear margins, but also do a fantastic job at shaping or closing up the area in a way that helps it heal cleanly and look as normal as possible.
I did ask her about fat grafting but she said it would be a little hard but definitely possible. I'm 5'3" and 100lbs so not much fat at all. I also have an A cup and the tumor is on the top left of my right nipple, so a bit of a harder area to reconstruct? No idea. I just got the sense that she was focused on the tumor and clear margins (as she should be!! nothing negative about that) but wasn't giving me much hope or options for feeling visually more normal after.
And overall, my insurance provider is in the middle of employee striking, with more lab/pharmacy strikes starting yesterday, and my doctor was very blunt that a lot will be delayed because of that, which makes me even more sad and stressed, because that's totally out of my hands. Like one more thing out of my hands on top of the cancer.
Idk, I'm just feeling a bit strung along on this journey I don't even want and feels very procedural. I know the surgery is only the beginning and I can expect even worse news after once the tumor is sent for testing.
Also stressing a little because I've truly had no health issues up until now and I'm very scared in hospital settings. To the point where I've blacked out a few times. Not into needles, can barely swallow pills, etc etc. All a bad combo for what's to come. I guess I was just hoping for a little more empathy from my team. Rant over, thank you to anyone who was able to read or skim this!
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