Undiagnosed but searches keep bring me here to ILC

AmazonCatwoman

I am not diagnosed yet but whenever I look around here and elsewhere, I keep seeing how what I have going on resembles what I read about ILC, so I figured I would post here in the ILC section.

So, at 12 o'clock on my right breast I have a thick, hard, flat, spread out, immobile, craggy type mass that feels like it is attached and just coming out of the tissue underneath. I found it during a self breast exam on 6/13. It doesn't hurt when touched and has been felt by a gyn APRN, a radiologist (dr) and 2 techs and is totally different than anything in my other breast. Now I can also look down at my breast and see this area too. Nothing showed on ultrasound or mammogram though and they said they are sure I'm fine and to come back when I'm 40. Never got a definitive answer about what this is though. I have an appt with a breast surgeon after getting a referral from my gyn office but it's not until 8/10. The thing is, I am noticing progressive changes in this breast. On the inner side of this breast where I'd been having pain, I found another hard area, but this is different. It is harder than the rest of the breast still but is in the shape of what you would describe something that is branching out. It is very visible during my self exam and you can litterally see and feel that this is there and is that shape. Also, going outward from this toward my chest and sternum, it is thicker, harder and lumpier in a more spread out manner and also visible. None of this is present on the other side. Now, the lower inside of this breast has changed in appearance. It's hard to explain but there is basically an outlined area where you can see that it's changed and the levels of tissue are different inside and outside this outlined area which follows the bottom curve of my breast. I also now have a small but very obvious indentation on the upper outer part of this breast as well. None of any of this in my left breast. My right breast was getting horrible piercing pain periodically (in the spot I eventually found the hard branching) but now it's mostly a pressure and pulling in this breast with stinging pain as well and just feeling like there is something in my breast.

Thoughts on this? Though I obviously hope it's just some crazy benign breast changes and know I have my young age and no family history going for me, I can't help but noticing the similarities between what I'm seeing and feeling in my breast with what I've read about ILC, down to it not showing on mammo or ultrasound despite being felt and now seen through the skin.

Would you feel comfortable waiting till 8/10 for an appt or would you try to get in sooner? I don't want to call the doc and sound unreasonable or like a Dr. Google hypochondriac type asking to be seen sooner but at the same time, I'm concerned about these mounting changes and problems with my breast, all of which I'm taking pictures of since I can see it. Let's say this did turn out to be ILC, could waiting another few weeks lead to it progressing significantly more?

Anybody know any benign conditions that kind of mimic ILC? I'm remaining relatively calm because I know worrying won't help me, but at the same time, for whatever it's worth, I do not have a good feeling about this.

nash

Clinically you should be fine until 8/10, but it would be good to see if you could get in sooner simply so you get some answers and not make yourself nuts with this.

I read through your other posts, and you really need an MRI. I don't think the BS would order a biopsy without anything showing on imaging (mammo, u/s) to biopsy. It would be really unusual to have a false negative MRI, so if the MRI was clear, you're most likely fine. My original tumor showed up on u/s and MRI, and was missed on mammo. My recurrence only showed on MRI (missed on mammo and u/s). So I'm a big fan of MRIs.

FWIW, I have found that BSs tend to have magic fingers. They can often tell what something is via palpitation. The first time I was diagnosed, the BS accurately predicted the size of the tumor during physical exam. MRI and u/s both had the size wrong.

At your age, the odds are in your favor that you have a fibroadenoma or some other sort of fibrous change. But definitely call today and see if you can get the appt moved up.

AmazonCatwoman

Thanks Nash. I will go ahead and call tomorrow morning and see if I can get in earlier, even if it's just being put on a cancellation list or something. I'm not working so my schedule is wide open to go in at any time. I'm glad to hear the MRI showed yours and that you had a good experience win your BS. It's my hope now that this breast specialist/surgeon will order an MRI. I have read a bunch of good reviews on fb and other medical sites about her so I believe she will be attentive and thorough rather than dismissive, which has been my biggest fear, especially after having felt dismissed by doctors in the past before finally getting good diagnoses for other issues. I figured that at the very least I would feel a lot more comfortable and confident with whatever a BS says they do/do not feel and do/do not recommend, than I have with other medical professionals I've seen thus far. Though I have more concerns with this breast now than I had initially, I have found a way to mostly stay cool and collected about all this now rather than freak myself out with worry like I was starting to before. Now, I just want to make sure that I advocate for myself and get the appropriate medical care during this diagnosticprocess and then I can take it from there. I really appreciate your response! Thank you 😊

nash

You're welcome! Please keep us posted.

I echo your sentiment about trusting the BS's judgement over the other medical people you've seen thus far, and I'm glad she sounds like someone who will take you seriously. I will never forget finding my first tumor on self-exam, calling the gyn office, and being told it would be six weeks to be seen. I had to put up a stink to be seen immediately. You've got a good handle on all this. Fingers crossed for a nice, boring outcome to it all!

AmazonCatwoman

I would have thrown a stink too! Fortunately, my gyn wait wasn't too long. I couldn't have waited 6 weeks when I first felt mine either. I got my BS appointment moved from Aug. 10th up to Aug. 2 and told them I would take any cancellations as well. While I'd love for them to just drop what they're doing and make me their priority patient, I'm glad to have gotten my appt moved up some at all. And I'm crossing my fingers AND my toes for a more boring outcome 😉 I will absolutely update when the time comes

Gitane

I'm glad your appt. was moved up. I had a good experience with my breast surgeon, too. Nash is right on. Let us know what happens.

AmazonCatwoman

I'm glad to hear it Gitane! And I sure will. Thank you 😊

dtad

I agree...MRI! Good luck and keep us posted

AmazonCatwoman

That's really what I'm hoping for now dtad! Thanks, and I absolutely will.

nash

How'd did your appointment with the BS go today, AmazonCatwoman?

AmazonCatwoman

Though I've been having more issues with that breast I saw the breast surgeon yesterday and she believes it's from fibrocystic changes and weight loss. She wants me to use evening primrose oil and coconut oil. I go back next month and if there are no improvements we will discuss excisional biopsy. I'm glad it didn't scream cancer to her and I am more comforted because this is a specialist saying this. However, Ijust wish I didn't have to wait another 6 weeks or so. She never mentioned an MRI, just excisional biopsy. She did a thorough breast exam though and was able to see and feel the areas of concern.

AmazonCatwoman

I honestly wasn't in the mood to ask a lot of questions or push anything. I went to urgent care straight afterward because I've been really sick and ended up getting a shot in the butt and 3 prescriptions.

nash

Hope you feel better soon.

Glad the BS wasn't alarmed. If it's any consolation, getting an MRI could take up to a month due to insurance approval and the fact that it needs to be done at the beginning of your menstrual cycle.

Not sure why she wouldn't want to do an MRI before an exceptional biopsy, but clearly she has her reasons, and you should ask when you go back.