Breast Rash, no answers Fear of IBC

Thank you both so very much for your response. I was originally diagnosed with cancer when I was 7 years old and I relapsed at 9. I spent four years of my childhood fighting hard to be alive today. I often worry about the late effects of all of my chemo and radiation, but I try to focus on the now and be thankful for all I have. My original cancer was on my left kidney, which I lost. It also metastasized to my lung at at that time. I received wonderful care and this April I will celebrate 22 years of remission. In 2018 I had another scare when tumors were found on my spleen and pancreas. They did a distal pancreatectomy and splenectomy and both tumors were benign!!!! I will never forget when they moved me to the oncology ward in 2018. I had done it before, but being an adult and understanding the fight made it a lot harder. Hearing that all of the pathology was clean was so amazing. My body is covered in scars from so many surgeries, but I am so thankful to just be alive! I think my complicated history has made me crazy this time! I feel like it looks so much better, but in the back of my mind I think about all of the weird things that have happened to me and get caught up in the what if's. That is never a good place to be. I am a 33 year old mother and have two young children and an amazing husband. With all of the medical things I have been through I just want to watch them grow and be healthy. That is what we all want, I know. I appreciate your support so much. I am going to stay away from google and try to just breathe and pray and focus on today. We are working with another insurance company now trying to purchase some type of coverage, but if that does't work I will still seek care. If my symptoms persist I will ask my doctor to investigate further. Thank you both so much. Huge to all!

I went in this morning from my diagnostic 3d and ended up spending about 3 1/2 hours at the mammography clinic. They went through my medical history carefully and talked about past surgeries, chemo, and radiation and my benign mass that was removed before. We talked about the swelling in my right breast as well as the bruised area/rash that has been here for 3 weeks. They said they do not see any skin thickening, peau d'orange or nipple changes. She did see the swelling and rash. I was concerned about peau d'orange, but she said that I seem to have a similar look in my other breast in the same area so it was not a concern to her. They said my right breast shows nothing of any concern and looked great on the mammogram. They did find two spots in my left breast and followed with a u/s. The radiologist did not like the first images so they sent me to a second u/s. They showed me the two spots, measured and took the imaging back to the radiologist. They came back and said that he believes they are enlarged lymph nodes. They are deep and near my chest wall. They did not want to do a biopsy and said I should follow up with another 3D mammogram in 6 months to re-check the nodes and see if they have returned to their normal size. They said the rest of the left breast looked normal on the u/s. I asked why these nodes are swollen and was told they don't know, it just can happen. I also asked what to do next about my right breast rash and enlargement. They said I need to keep pushing for answers, but now that this testing is done it can rule some things out.

My question there is that I have seen so many of you say that mammograms miss IBC. They didn't even do an u/s on my Right breast, which was my concern. Is this normal and what could have been ruled out on my right breast through the mammogram?

I head to my Gyn appointment in the morning and have a follow up with my PCP on Friday morning. I tried to ask what it could be or if they have seen anything like it but they said they did not want to speculate on what it is, but I need to continue to seek a diagnosis. I did specifically speak to them about my IBC concern and they brushed it off and said that that they did not believe it was IBC or Paget's, which I didn't even bring up.

I ended up leaving with more concern than I had before. Now in addition to the rash and swelling in my right breast I have swollen nodes in my left breast. I also tried several dermatologists and the closest appointment I was offered was near the end of April. I am still scared and confused. I have a lot of questions for my appointment tomorrow and I am hoping between my Gyn and PCP they can get a dermatologist to take a look at me sooner than the end of April.

Does anyone have any advice on what I should do, questions to ask or where to go from here? Why would nodes just swell inside the breast? Is it possible that the swollen nodes in the left breast have anything to do with what is going on in the right breast? I have never had any swollen nodes on previous mammograms, but they did not seem concerned.

I hope you are all doing well. Thank you again for the place to ask questions and find support.

I am going to keep updating here in case someone in the future finds this thread and anything here may be similar to what they are going through. As always any advice is appreciated.

I ended up receiving another call yesterday afternoon late. They were able to get me into dermatology and had me come in at 7:30 this morning prior to my Gyn appointment. The dermatologist was lovely. She actually had everything setup to do a punch, but changed her mind after seeing it herself. She said that it could be caused from anything from folliculitis to contact dermatitis and she doesn't know what it is, but she does not believe that it IBC or Paget's. She said that the discolored area is small and that after almost three weeks she would expect other symptoms like more redness, distinct swelling, thickening of the skin, nipple changes, peau d'orange etc. She said I only have one symptom of many that might lead someone to consider IBC and with this combined with my mammogram, she is not concerned. She said that the mammogram would have caught some changes as well since this has been going on for a few weeks. I have read conflicting information to this online, but I am going to try to trust my provider. She also said that it would not be improving like it is. During her exam she found a hair follicle that was swollen and open. She believes that it might be something bacterial and wants me on antibiotics for a month. If anything changes I am to call the office and they will get me back in ASAP and if not she will see me back in 1 month to re-check.

Next up was my Gyn appointment. I had two very extensive breast exams by his student and the doctor and they both think that things look pretty good aside from the discoloration. They said that my right breast is larger, but they don't believe there is much swelling. As was suggested this part of my anatomy is probably more prominent to me now due to concern. I still feel like it is much more pronounced, but they were very thorough. They picked through every aspect of my medical history, previous tumors, biopsies, chemo and radiation. Unfortunately mammography had not sent over my imaging or the report, but I was able to convey what they found. They did not feel the spots seen in the left breast on the mammogram and U/S and also said they they felt like the explanation was poorly explained to me. He felt like they were probably normal lymph nodes that were just caught on the imaging, not anything of concern. He is going to get with the radiologist and confirm and look through the report. There were no swollen nodes found anywhere on my physical exam and he said he thinks this is going to clear up and is not any cause for immediate concern. He is also going to see me again in a month for another breast exam. He agreed with the radiologist plan to re scan the left breast in 6 months to re-check the spots and 5 and 6 o'clock. So, as far as my rash in the right breast I am praying these antibiotics clear it up completely and I can move forward.

If they do not I feel like my team will be ready to help me and answer any questions or address any changes. I wanted to say thank you for insisting that not having medical coverage should not stop me from getting answers. First, I think we all need coverage, but I know from personal experience how hard it can be to find good, affordable coverage, especially if you are self employed. We are moving forward with a new policy that should be effective April 1st. It is expensive and it isn't nearly as good as what we had in the past, but its insurance. Going about this self pay has not been terrible. My doctors office helped me use mdsave to get amazing rates on testing and I found that the cash rate at my Gyn was 65% off the regular price. My PCP has affordable cash rates and two different hospitals have been excellent at working with me as a self-pay patient. If you are worried about anything don't let lack of coverage stop you from getting answers. Talk to your providers and they might have savings programs or resources that can help you.

My PCP sent me for a right U/S today. The breast center seemed annoyed that I was back again and actually called to argue with my PCP. They had in the system that they scanned the right breast after my mammogram. They did not, only the left where the spots were seen. After having to argue they finally realized it was logged wrong and they had never done anything additional with my R breast (where the issues are).

They scanned my breast, had radiology take a look and the sonographer came back and told me all was normal and he doesn't see anything alarming and I was sent on my way. I teared up a little because still no answers and they seemed to not care at all. The mammography tech that did my tests a couple weeks ago saw me checking out and as they were sending me to medical records offered to escort me. She asked on the walk what they found and I told her nothing. She asked where I was going next or what I was doing. I told her probably back to my PCP. She said she thinks this will be nothing, but I needed to find out what was going on and not let them dismiss me. I told her about my original diagnosis as a child and how my mother was dismissed for over a year before I was diagnosed. By then my tumor was huge, kidney had to be removed and I had metastasis to other regions. She said, "good, your a pro and you know what to do". She suggested just as you have that I get back to derm and don't ask, but tell them that I want a punch biopsy because that is the only way to rule other things out.

I called my derm and due to the current medical crisis they are only seeing patients with current problems and had me in at 3 this afternoon. The dermatologist said its still there, but doesn't look to bad and its not progressing. She still believes it is not cancer related, but doesn't have any advice as to what it is or why cream or antibiotics have gotten rid of it. She said she could biopsy it, but it would leave a permanent scar. (15 major surgeries over here, my body is a scar ... I don't care). She centered up on the discolored area near my nipple and took a sample. She said it will be back from the lab in 2 weeks or less.

I am praying this is nothing and it clears up, but I am thankful I have finally gotten it biopsied and sent off.

I don't have any appointments for a couple of weeks until I see my Gyn for a f/u breast exam. Hopefully I will have biopsy results back then.

Having so many people look and nobody knowing what it is has been very odd. They all seem to agree that they think it would have progressed more or be different if it were IBC.