IBC/Skin Lymphoma Fear.... Trying SO HARD to be RATIONAL

[Booboo111]

I'll start by saying I suffer from pretty severe HA, like many of you. So much fun, isn't it? I am a very rational, strong, intelligent woman, and I never had anxiety a day in my life until my daughter was born 3 years ago. I would literally chop a limb off if it meant I could get rid of this horrible condition...

So I've only posted a few times, and I don't even know exactly why I'm posting this, but maybe just for some feedback from Others who understand, because while my family is loving and mostly supportive, they have no idea what it's like to be so fearful of your health on an almost regular basis.

I have a small 1-2 cm, maybe a little bigger, rash on the top part of my breast, close to my armpit. I got one like it months ago and it very slowly went away. It came back a few weeks ago, and after not googling for many months (progress, I thought I learned my lesson...) and boom, instantly terrified of IBC. But I have ridiculously sensitive skin and the rash is right where my bra meet the crease when my arms are in resting position. No other signs/symptoms, but it is truly amazing how googling and obsessing can make you almost delusional, and then you are convinced you see other things...

Ran to OBGYN, who knows my anxiety and is very kind and patient, who said it looks like contact dermatitis, but if not gone in a few weeks, would do mammogram. Now things like that are not good for HA sufferers to hear, because after we leave the dr office we think, were they really concerned and didn't want to scare me?!? Or are they just saying that they will do a mammogram to all my fears?!?? UGH.

She told me to use hydrocortisone, which helped it a little, but I stupidly kept wearing the same bra, and it got a little bigger. Decided to run to Dermatologist, who I see yearly for my skin checkup as I have Basal Cell in my family. He is a nice doctor, but this is what he said to me.... "It looks like contact dermatitis." Then I told him I had stupidly googled and found out there is a form of lymphoma that affects the skin. He said "Unfortunately that can look like anything, but it usually shows up in multiple places and not in a place that makes sense, like where your spot appears to be from your bra irritating now that area." I pressed him and he said he wasn't concerned, but he said "you'll never get a doctor to say never, and that skin lymphoma would get better at first with a steroid." Ugh - AHHHHH :( . And THEN he said, "When the nurse said you were coming in for a rash, I figured you'd be worried about Paget's disease, which is a form of IBC." SERIOUSLY DOC?!? You CAN NOT SAY SOMETHING LIKE THAT to a person with health anxiety. So now I've been petrified for two days (my appointment with him was Thursday.) But - trying to be rational - he gave me a topical steroid and it has helped the spot a little... But it's certainly not gone yet, although it's barely been 48 hours... And I called my OBGYN to update her because of his comment about IBC and she said if it was that it wouldn't get better at all with the topical steroid. So I guess I have my answers?!? I F*****G hate this....

Any comments, feedback, or personal experience would really help me, guys. I secretly hope the famous Fishmanpa will comment because he's the most sane, rational, experienced person I always see on here! Thanks for taking the time to read - I do appreciate it. Peace and HEALTH to you All!!

[.Poppy.]

I'm sorry. I know how scary this can be.

I also have been experiencing a rash that the docs don't seem to know what it is and has got me terrified. I refuse to google so I don't have any specific fear, just that it is scary to me.

When you called to make an appointment with your derm, did you mention the location of the rash? Does he know about your HA? From what he said, he doesn't appear to suspect at all that it is IBC, just that based on the info he was given before you came in (HA suffering woman concerned about a rash on her beast) that he thought that is what YOU feared. And he wasn't wrong.

Based on the location and the fact that two doctors have given you the same diagnosis, they're probably right. Your OBGYN was probably just covering her bases and putting your mind at ease/making you feel heard and supported with her mammogram suggestion. The spot will probably be gone by then and it won't be an issue.

Try to hold on to the idea that it really is the simplest explanation, hard as it may be.

Hugs xx

[31andcounting]

Hi Booboo,

Take a deep breath, you are not alone. I am going through the same thing..except I have yet to see my dermatologist. I will be making the appointment on Monday. My symptoms are slightly different, but I did the WRONG thing and googled Paget and immediately came home and took a xanax. Like you, I consider myself intelligent and rational...but the thing with HA...it removes all rational thinking and consumes you. You should see a good improvement with the steroid use in one week. Stop wearing the bra that is causing the irritation. Symptoms will improve, not get worse. If you do not see an improvement, follow up and get a mammogram. The peace of mind is completely worth it. I hope you find some comfort knowing that I am going through a very, very, similar experience and it is terrifying. I have my annual mammo scheduled next Friday, and I am hoping to get in to my dermatologist before then. Awkward to say, "hey can you check out my nipples??" Hope that made you smile, because we all know that people with HA ask some pretty wild requests.

[Booboo111]

Thank you both so much for your replies; it honestly does mean a lot to me! Yes I had told both doctors about the location. It's in the very upper part of my breast, near the crease in my fat / armpit, which is why it hits right on the ridge of any bra. I have seen some improvement (not as red/bumpy, now bary raised, almost flat) - even my husband is trying to drill it into my brain that it looks better than it did a few days ago, and even a week ago - so I'm trying to overcome the HA, which does a sick job of trying to convince me otherwise. It's like it literally misconstrues everything! Thoughts, actions, words, and even my sight! So aggravating, exhausting and even maddening all at the same time. So I'm laying on my couch with my 3 year old little girl who I love more than anything (and a backwards contributor to my HA because of the unconditional love I have for her) trying to keep calm, distracted, hopeful and RATIONAL. The area feels a little funny, but it does say that can be a side effect since it's a steroid and we all know how hypersensitive us HA people are with out bodily sensations. If I've seen improvement in the rash... Then it's got to be a good thing and God willing, nothing harmful at all! Right?!?! Peace and Blessings

[Leslie735]

Not the same thing but I can completely relate to everything you said! Back in January I found an indentation on the side of my right breast when I lift up my arm. I completely FREAKED OUT! I ran to my OB/GYN (I was due for my yearly anyway) and she thought it was stretch mark related but set me up for a diagnostic mammogram and ultrasound. I had both the very next day and, praise God, they were both clear! I left there feeling amazing! It wasn't even a day later I started questioning things. I googled and I totally freaked myself out even further. I read SOOOO many stories of mammograms missing things and ultrasounds too. So I decided to go see a surgeon. I saw him and he looked at my tests, gave me a very detailed breast exam, talked with me, asked questions etc. He was really great actually! Even though he couldn't see the indentation (Its hard to see in certain lighting, but its long like 3 inches) he concluded it was stretched skin from having kids/getting older (I'm 31). Again, I left there feeling confident. Within 3 days I was back to panicking and I still am. Its been over 2 weeks since I saw the surgeon and I'm tempted to go back and demand an MRI. I just can't move past it because I googled and read all those stories of the tests missing things. I hate this and its ruining my life! :(

[WiseMonkey]

Hi these spots etc on the breast can take a week or so to disappear, just like on any other part of the body.

I've had this fear at times as well and check to see if there is a lump there or that the area is hot or itchy. It never is and there is never a lump either.

Do mention your fear when you have the mammogram and they may do an ultrasound as well.
Take care L