A little frightned is the understatement of the year…I have had massive changes in the left breast, and some changes in the right breast. It started with what felt like a sunburn feeling on my left nipple as I was walking around farmers market. I made some jokes about it. Then my husband made a joke a few days later saying look hun, your left breast has gone and caught up in size with the right. The burning sensation at this point was coming and going. This is when I noticed the left nipple appeared to be flat. Then I noticed an indent on the right aerola. Finally there is a patch of rough skin on the left breast that just appeared out of nowhere…like rough road or something…bumpy. it was when I was looking at this was when I noticed the swell under my arm. So that is when I stopped joking about all of this. Doesn’t seem to be a laughing matter, as I took to the internet to see about my symptoms and the only thing popping up time after time…IBC. I am waiting for the Dr’s office to open in a few short hours to see if I can get in, though I am nearly sure he will tell me because this has all just begun, it is just an infection or something.
Hello Sonjalee
Welcome to the forums, this must be a very worrying time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.
In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Best wishes
June, moderator
Update…called the Dr. with my symptoms…they got me in right away, within 15 minutes of my phone call. The Doctor did the checkup, and found a lump…he also asked me if I have ever heard of IBC, I told him that when I was researching my symptoms that it did pop up. We went over a few things, he personally walked me over to imaging, where they got me in to the earliest appt for tomorrow morning…this is all moving so fast, my head is spinning. I wish I could go back a few years in my life…slow time down a bit…I am so sacred right now.
ok…well here it goes…I am slightly suprised to hear this information…Mamograms do not detect IBC, and ultrasounds cannot either…I am being sent for biopsy…which is the only way to really know for sure. I wish we could have by passed all of the above and just gone straight to this. I really feel like the industry is out to make a few bucks if this is true. So that being said, still moving in what feels like warp speed ( say this because any other time I try to be seen by the doctors…it takes weeks to get in) it seems I am up for surgery this week. I am not sure of to much more than that as I am waiting for the call back from the nurse to get me more information. I hope to hear how long it takes to get the results, and how the surgery done…still very scared…not sleeping at all.
Not sure where to begin…I had a doctor pushing me at such a fast pace…only to end up in front of a general surgeon…who looked me in my face and said after feeling and fumbling around on my breasts…well I do not feel any lumps that are concerning. Hmm, well I asked a few questions, like had he ever heard of IBC, had he ever heard of my type of symptoms before…he agreed that he had not. What little he did know of IBC, he only had to say to be he knew it was very rare…and well honey…you do not want that cancer…uh…I do not want to be sick at all!! So anyhow, this being said I had to argue my way into an MRI, which I have set up for this Friday.Since then I have had more symptoms and now involving the right breast, plus the orange peel skin the doctors were looking for. Also my right nipple has taken on a look of sliding downward. I have a journal and write everything down, and I take pictures of everything new that I notice, as it is moving at record speeds. I have read that women with IBC do not get upset bellies, weight loss, or headaches…but these are also on my symptom list.
Back from my MRI…I believe I have wonderful news…at first I was unsure as everyone acted so off about it at first. They had told me the entire test would take 20 minutes…it ended up taking a little over an hour. I asked at the end of the test to the Tech if she thought everything looked ok, she went from being a very warm friendly person to a very cold and distant person. She informed me that she was only a Tech and that I needed to talk to the doctor who refered me over for the results so they could go over evything with me. This sent me into utter terror as the Nurse from the surgeons office had told me if the Tech’s spotted anything I would be notified right away, if everythign was fine I would know that info and get scheduled for a follow up. SO this was so confusing…it didn’t fit either situation that she gave me. So after much arguing, they finally released my images to me on disk…and after repeated phone calls the general sugeons nurse finally called me back and informed me that everything she saw on the report from the radiologist says there is nothing to worry about and all lumps they found on the imaging looks to be begnin, unsure how they determine that from imaging…but I am willing to take that as it is good news. She scheduled me for an appt with the general surgeon for Monday…but I am going to cancel this appt…I feel like I have been through quite enough with this doctor…
As far as to all of my symptoms…when I asked the nurse about that…her and the general surgeon feel that I have imagined them all…so while this is slightly offensive…I again would rather this be the result…then have anything else as my option…
I do have pictures my husband and Iwear taking on our phones…and my husband was probably more offended than I at hearing that it was all in my head…but I would rather hear this news…if I keep noticing changes I will keep up with photographing as his seems to be the only thing on my side…but I now have three tests a mamo, ultrasound, and MRI to compare anything against in the future should it continue…but I have high hopes it will just all disappear for me!
After the all clear from the general surgeons’s nurse…hearing that there were no lumps…that the MRI reading was begnin…yesterday a red rash showed up on the right breast. The red rash looks as though I took the pointers of a hairbrush and slapped it against my breast. I really thought with the clear MRI the symptoms would not only stop…but they would magically go away. i went to pick up my images from the surgeon who said this was all in my head. He asked how I was now that I knew I was ok. I showed him the rash, he turned with a very alarmed look left me and my husband alone in the examine room…came back in to take photos to email over to the breast care center…then called to get me an expedited appt… they called while I was still in the building. So Thursday I am finally being seen by a specialty center, but only after I already have been cleared by all three mamo, ultrasound and MRI…not to mention my blood tests came back healthy as a horse…my white blood cells aren’t even slightly elevated. I am unsure what is happening…or if the fact that I am vegan…do not drink, never smoked, exercise 6 days a week is what keeps my blood counts in check…you would think if it were an infection…the white blood cell count would at minimum be elevated to fight that off! So as I am trying to be rational…I am scaring myself at the same time. The one thing I have to comfort me is this…whatever is going on, I will be fine.