Worried about symptoms

Update: The rash has somewhat subsided (brownish marks are still there, but no redness or itchiness). Unfortunately, my breast pain has worsened considerably in the last few days - throbbing pains in the affected (right) breast and armpit which make some arm movements difficult. The breast also looks a little larger and swollen, I think (not sure of this since it has always been bigger than the left breast anyway). And it's not even PMS time!

So, I'm more scared than ever of IBC. I'm going to my doctor again tomorrow, though I'm confused as to what will happen next. Referring to the dermatologist seems rather pointless now, since currently pain is the main symptom. Can my family physician directly refer a biopsy? Should I ask for one? As far as I know, there are no breast specialists in the place I live.

Thanks for the reassurance. I'll update on what my doctor says tomorrow.

So my doctor (a different one, not the family doctor) checked me out today, and got another US done. He confirmed that there is a lot of swelling in and around my breast, and the whole area is very painful, and he also found a bit of nipple retraction; however, there is no redness, warmth or hardness, and the skin seems normal other than the earlier rash which has left some purplish scars. The US came back normal again. So for now he's put me on anti-inflammatory medicines for a week, and will refer me to an oncologist if there is no improvement.

I'm hoping for the best.. thanks for the support here.

Well, there isn't really anything much for the derm doc to see now, since the rash has more or less faded apart from a few scars. The swelling and pain seems to be the main problem currently. I'll definitely ask for a derm referral if no other diagnosis happens soon.

Hello.. I'm back to say that I'm getting worried again. I haven't started with the Danazol yet, since my family doctor suggested I should get a hormone profile done to check if I actually have hormone imbalance; I'll have the blood test on 11 March.

But meanwhile, the pain and swelling in my right breast seems to have actually got a little worse, over the last 2 weeks - my armpit, especially, is very painful. And this is right past my period, so it can't be PMS (it has been continuing from 3 weeks, anyway).

My worry is that I don't think any of the 3 doctors I've shown are really familiar with IBC. My family doctor hadn't even heard of it, the gyn hasn't seen a case though she knows about it, and the oncologist (who prescribed Danazol and was rather dismissive of my concerns) seemed to be familiar with it but his attitude made it hard for me to question him further.

So I'm thinking - if my blood work does indicate a hormone imbalance, of course I'll be relieved and will start on Danazol. But if it's normal, then won't it mean that the cause is not hormonal? And in that case, should I try to go for another medical opinion, someone who might be more open to prescribing a punch biopsy, instead of biding my time with hormonal medicines?

As of now, my symptoms are moderate/severe pain and swelling in the affected breast and armpit, some pain in the left armpit also, and a few scars (brownish marks) left over from my earlier rash - I don't know if it can be called bruising, but it does make my breast look a little different. Still no warmth or redness.. but not all IBC cases have those symptoms, right?

I'll know the result of the hormone test by Monday.. feeling quite tense, meanwhile. Any advice/support would be appreciated!

Today I got my hormone test report; everything is normal, and specifically, estradiol is on the lower side (24 pg/ml). So it doesn't seem like my symptoms are due to any hormone imbalance. On the other hand, the armpit pain and swelling is getting worse day by day, and the right breast size has increased further. I guess I need to get to another doctor soon, for further testing. I'm feeling more and more worried.

Thanks for the reply! I haven't taken Danazol yet since I was concerned about some of the side-effects (hence the hormone test). And honestly, after the pain and swelling in my armpit has worsened over the last 2 weeks to the point of being debilitating, I'm finding it hard to believe that such an acute symptom can be due to hormones. And it has been steadily getting worse right past my period, which was a week back - whereas fibrocystic breast pain fluctuates pre- and post-period, right?

Also, one breast being bigger than the other is not the problem (it always was) - the increase in size is what is worrying. I've had to go up a bra size, in the last 1 month, just because of the right breast.

So I'll probably get another opinion, and will take Danazol if he/she also recommends the same.. will keep this forum updated, either way.

wrenn - Maybe not, if I feel they don't know much about it. Two of the four either hadn't heard of it or never saw a case.

Sjacobs146 - the first oncologist (the one who prescribed Danazol) was a breast cancer specialist. Maybe he had more experience than the last one, but he wasn't even willing to talk.

I'm hoping that the antibiotics work, too; but not so confident, since this whole thing has been a gradually worsening process over 1.5 - 2 months, and an infection would probably be sudden. Anyway.. 3 days and no effect, as of now.

Update: absolutely no effect of the antibiotics. The breast/underarm pain and swelling is continuing as is (moderate/severe) - no significant change in the last 2 weeks. I visited my earlier doctor (gyn who I was consulting for breast pain in Jan/Feb), who did a physical exam after one month, and said that she can see the underarm swelling, but can't find any hard nodes, and the breast swelling/size change also doesn't seem suspicious since there are no specific skin changes or nipple retraction. So she went back to the theory of its being hormonal, and asked me to try Danazol if my symptoms are too bothersome. As of now, no further tests or doctor visits required, she feels.

I would like to have an MRI just to be sure, because the pain and swelling definitely is troubling me; but it doesn't seem like anyone's going to refer me for one. I'm still on the fence about starting Danazol. It feels like back to square one, except with worse symptoms than a month back. And I'm tired of going to different doctors with no consistent diagnosis.

I don't know if my posting here even makes sense now, given this impasse. But I've sometimes lurked on other 'not diagnosed but worried' threads with symptoms similar to mine, and I find it frustrating when people disappear without any information on what finally happened. So I'll keep updating here till I either get a diagnosis, or get better.