Need advice - young and very afraid.

Onic28 · July 2013

For starters, I just want to say that I'm completely and utterly terrified and I'm so sorry if this is too long but I would appreciate anyone reading and providing a little insight.A little background, I'm 22 (female), admittedly overweight but otherwise pretty physically healthy. I do suffer from anxiety and OCD, and take Xanax for anxiety attacks, which are more frequent because of this entire issue.

Back in January of this year I had my first ever OB/GYN appointment. During this appointment my doctor was examining my breasts and noticed that there was discoloration on my left breast, mainly a little on the sides and from the nipple down, effecting both the skin of the breast and the aerola. At that moment I realized that I did notice it but because I've had a history of dry skin and eczema, assumed that's what it was. She quickly said that that's what it was and moved on.

A few days later I started thinking about what she said and ran to the Internet where I learned of IBC. I immediately called back, scheduled an appointment and addressed my concerns about IBC. She assured me that this wasn't cancer, just eczema but referred me to a dermatologist.

I went to a dermatologist who perscribed me a steroid cream but it didn't get better after a few weeks, so I called back and asked to be worked in. When I got to the office, my husband came, and I was so upset. I literally just burst into tears telling her how scared I was and she was incredibly sweet. She said, "Let's do a biospy right now. This is NOT cancer but you aren't going to believe me so let's ease your mind today." I don't even remember the rest of the visit really. I called back every day until they finally rushed my results and it came back as Spongiotic Dermatitis.

This SHOULD have relieved me, but it didn't. The nurse who told me my results said the cream they gave me should clear it up, but it didn't really... I also found a website from a clinic in Florida that said a clear biopsy didn't mean it should be ruled out. I've read stories of people who had three biopsies before it was found.

I called the Duke Breast Oncology center and spoke to the lady on the phone telling her all this. She said that a biopsy would have detected it, to go back to my dermatologist and talk with her and that if she felt I needed to be referred that I could call back. She was very sweet but seemed to discount me a bit since I didn't have the orange peel like skin or swelling.

So I called back and made an appointment for August at my dermatologist. Well a few days ago they called me because of a cancellation and I jumped on it.

I went in and basically said that I wasn't trying to convince myself that I had IBC, but that I didn't understand why it wasn't getting better. My anxiety is through the ROOF. She then told me she could order a mammogram which was pretty much a terrifying thing to hear because IBC doesn't show up on mammograms. She told me that what I had was basically eczema and that it was really stubborn sometimes to go away, and that stress makes it worse. I have another apointment now in September but I am so scared to even wait that long. She's also used the term "pagets disease" a few times when I've tried talking about IBC, because when she talks she says, "if anything I'd have thought you'd be worried about pagets, not IBC." So I'm not sure how familiar she even is with IBC

My symptoms aren't in line with all the "normal" symptoms of IBC... my breast isn't swollen, the nipple is not inverted and it isn't warm to the touch. If I pull the skin of breast taught I can convince myself that it has an orange peel look, because it looks kind of dimply but it doesn't look pitted. The skin doesn't seem to be thick, but it is kind of red on the aerola and a light brownish almost yellow color on the skin of the breast.

SEVERAL months ago, maybe in March? The breast was extremely bright red for about a day, but that went away and never returned. I should note that during that time I was trying different lotions and oils and I could have irritated it... from what I've read, the redness like that usually doesn't come for a day, leave and never come back again but what do I know?

I've been pleased with my dermatologist until this past visit when she perscribed me Elidel. After going home and researching Elidel, it's been linked to cause skin cancer AND lymphona and to me sounds like a pretty risky drug. I'm trying to decide if I should try it for a week and stop or call back. I don't want to get on my dermatologist's nerves, but this is MY breast and it DOESN'T look like I think it should.

Also, the skin is very dry and I think it actually has gotten better in the past two months, but I'm still very nervous. Am I allowed to post pictures here? I'm going to try and if I'm not supposed to, please just remove it or someone direct message me. I am so, so, so scared! I know I'm young, I know this is a rare cancer, but I am so scared. I feel like everyone thinks I'm a hypchondriac and no one is taking this seriously. Maybe I AM one, but I'm not sure where I should go from here. Should I call a breast specialist? Am I completely overreacting? The Internet has been such a terrifying place for me these past several months.

If I had to guess, I'd say that this issue has been going on for at least 8-9 months. I'm scared because I've read that without treatment, this could be deadly in less than two years.

The attached picture shows my breast right a few days post biposy (May 24th roughly) on the bottem, and then what it looked like last night. One isn't bigger than the other, though... that was my attempt at trying to align them when I was making these side by side. I spend so much time trying to compare my pictures to pictures online and it's frustrating because I can't find anything that matches... even eczema.

Thanks so much for any help... I'm definitely not looking to be babied but please be gentle with your responses... my anxiety can't take too much terrifying speak today

(picture has been removed)

Iniah · July 2013

Hello Onic

I am so sorry for what you are going through. Take a deep breath and then another one! I think you should go to a breast care center at your nearest big hospital. I am in Salt Lake City and we have an excellent Breast Care Center here affilitated with the Huntsman Breast Cancer Research Group. I say that because I think only a negative diagnosis from a top institution will put you at ease that your problem is dermatologic rather than breast cancer. I totally understand you and I think if I were is your shoes, I would not give up until I had confirmation of this being something benign. Besides the mammogram you could have an ultrasound done or any and all diagnostic tests available for inflammatory breast cancer. I don't know if you have insurance or not? Maybe you are just scared (does anyone in your family have breast cancer?)or maybe it's your intuition just telling you to check it out. You are very young and I dont't know much about inflammatory breast cancer. So, if I were in your shoes our your mom, I would asked to be referred for a mammogram and ultrasound of your breast at a larger hospital that has a dedicted separate breast care facility. Here in Salt Lake City it is the breast care center at Intermountain Medical Center and I see Dr. Brent Parkinson. If he tells you you don't have breast cancer you could be at rest and go on.

Having anxiety really can stress you out, I know as I have it too. Try to not let the "What ifs" get to you. But I do think its best if you get a clear confirmation that you don't have inflammatory breast cancer, so you can move on and enjoy life!

All the best to you and take another deep breath! I am here for you whenever you would like to talk. You can message me privately too.

Good luck!

Iniah

DiddleyDoo · July 2013

Hi Onic28 - I read your story and while I haven't be dx'd with IBC, I wanted to just send you a post to hopefully relieve some of your anxiety. I know how frustrating it can be to have a chronic issue that you can't get resolved. The path report that came back as spongiotic dermatitis is likely reliable and you have a history of eczema that could suggest additional sensitivity for you. The good news is that you don't seem to present as "typical" IBC and the symptoms you describe are in line with the inflammatory response associated with spongiotic dermatitis. This said, if you are concerned still about IBC or Paget's, you could consult with a breast cancer specialist, bringing your bx report for them to view. They can advise you on whether or not you should undergo additional testing and will hopefully be able to reduce your anxiety. I'm sure they would be understanding and respectful of your concerns. Meanwhile, you may want to investigate spongiotic dermatitis. It would appear that this tends to be associated with an allergic reaction. It may be that your skin is hypersensitive and you need to be careful about soaps, perfumes and detergents. Maybe there are some holistic medicines you can try to reduce the inflammation you have if you have concerns about the medicine your doctor is prescribing. Do you have blisters? I'm uncertain of the time between the two images, however, if the bottom one is earlier than the top one, it does appear to be improving. I'm sorry I can't be more helpful. I do understand your anxiety and hope that you will be able to resolve this soon. (((Hugs)))

Onic28 · July 2013

Thank you so much for your responses. This DOES make me feel a bit better. I've continued using the Elidel but will stop after two weeks... the risks don't seem to outweigh the benefit here for me when it comes to that specific drug.

The picture on the bottem was taken about 5 weeks before the one on the top, so it does show some improvement. The bruise was from the biopsy, but the discoloration (lightbrown underneath, red on the aerola) was the whole reason I had the biopsy.

Yesterday I was feeling a little better about everything but then today I felt this random pain in that breast. I honestly don't know if it's because I'm freaking myself out and convinced myself I felt it, or if it's because something is actually wrong. It only lasted a few minutes and then went away.

For those who are familiar with IBC specifically, if discoloration was my only symptom and it had been going on now for 9 months, would it be normal for this to not get "worse" but remain stagnant? I'm considering calling a breast speacialist the beginning of next week and I guess I just want to call sounding as informed as possible. Sometimes I think I'm crazy for even considering that I might have this, and then other times I just feel defeated because no one takes me seriously.

Thanks so much!

Anonymous · July 2013

Hi Onic28,

I am new to this IBC fright as well. I still don't know what I have, tho' like you I've had diagnostic imaging, etc and still trying to get to the bottom of it.

I saw your question, and saw that it hadn't been answered yet but I think (correct me if I'm wrong, IBC warriors) that if you've had those consistent, never-changing, symptoms for 9 months, and they have not gotten worse by now and you're not experiencing any more than any more than any usual pain, redness, etc., that IBC doesn't seem likely. It also seems that your images are nothing quite the same as I've seen in IBC photos, but every woman is different, and then only a doctor or more diagnostic testing can tell for certain.

I've also been experiencing IBC-like symptoms with redness on one areola (the affected breast) but no discoloration... tho' a terrible amount of breast swelling and pain. I'm praying it's not.

So no, I don't know all the answers yet... still getting them sorted in my own mind as I go back and forth to all my Dr's appointments and screenings and so on... but I really think you need to put your mind at rest at least for the moment, that everything seems as your doctor has explained and it has been 9 months... I would really think even more symptoms would have shown by now if it had been IBC (but again, correct me if I'm wrong on this, everyone).

You are also very young, and you have that on your side.

I wish I could offer more advice, perhaps you will soon get some support from others onboard. Good luck, take gentle care of yourself, I know the terror all too well! ...like others have told me here, you do have to find ways to learn to stay calm (anxiety meds are good, in small amounts anyway), a good book, a good movie, a walk around the beach or a lake, or in the woods... try to distract yourself as much as you can while the news is good, and in the meantime, if you feel like there's something really wrong, I advise you to seek medical advice from someone who knows a little more than me (i.e., a doctor - even tho' I must admit right now the doctors are even driving me mad with all the unanswered questions they've left me with! Keep calm and also keep pushing to find an answer every chance you get, we all know our bodies better than some stranger does (and if it's a doctor you've never seen before, it's virtually a stranger!)

Hugs, and comforting vibes your way, I hope you find the help you need here as the ladies on this forum really are wonderful.

~sg

Onic28 · July 2013

It seems so many people deal with family and friends (not to mention doctors) who just discount your worry when you mention IBC. Since my first post I go back and forth between worry, rationalizing I'm fine and then straight anxiety attacks.

My husband was furious when he found out I was visiting this board, suggesting that I'm making my anxiety worse by reading about something he "knows" I don't have.

The decent news is that I did decide to do more research into the dermatological issue my biopsy revealed. I visited an allergy specialist yesterday who, believe it or not, was the first person to take my concern seriously.

I didn't see the actual doctor initially but went in for allergy testing because if this is dermatitis, perhaps something I'm eating it touching is causing it.

When I finally saw the doctor he explained I didn't have anything really show up on my allergy test, but I'm still wearing a patch test that I have to have read on Friday that tests for more chemicals.

He also ordered a test for Celiacs Disease (apparently eczema is a symptom of Celiacs or gluten sensitivity), and another blood test for allergies.

When he looked at my breast he looked slightly perplexed and I almost started to cry when I asked him if he was familiar with IBC - which I fully prepared him to say no- and he said YES! I was so excited (crazy I know). I started to ask him lots of questions which he knew the answer to, and then asked him ultimately what he thought.

He was very honest and was the first person to say "I can see why you're stressed out", but he also told me he didn't think that's what I had. He said he had seen it before and I didn't have symptoms that matched in his opinion and that this had been going on too long for such an aggressive type of cancer. I told him my fear of it not being presented typically, a false negative biopsy, etc. etc. and he agreed for my peace of mind to help me get to the bottom of this. My diagnosis sheet also says he thinks it could be "fixed eruption" which I haven't researched yet.

He also is the first person to admit that if this is a random patch of dermatitis, it might not be something that ever goes away. Not what I wanted to hear, but I'm thankful to have someone listening to me.

So I go back on Friday to find out results of patch test and blood test. If all comes back clear, ill be making an appointment with a breast specialist but I'm praying I won't have to do that.

I think I'm just getting some of this off my chest but I appreciate having a place to write all this down...

DiddleyDoo · July 2013

Hi Onic28 - I'm glad to see that you have found a physician who you feel more confident in and is working to get this sorted out for you. It does sound like he is taking your concerns seriously, which any doc should. I hope he is able to figure this out and that you are able to move beyond this horrible anxiety that comes with not knowing. All the best wishes to you!

Onic28 · July 2013

Well this morning was frustrating to say the absolute least.

Two days ago i started feeling really sore under my arm, sort of down my side. It hurts to the touch and when I extend, so it could just be a sort muscle from doing a lot of lifting over the weekend but of course in my hyper attentive state, I assumed it's another symptom of IBC. I don't really feel any swollen lymph nodes but then again, I'm not 100% sure what that WOULD feel like because I've never felt that before.

Last night after a decent amount of friction was rubbing against the same problem breast I looked down to see that it was VERY red and splotchy. The area that typically remains a dull pink/brown color was just very red, and then on the top there were very splotchy spots. I panicked. This morning the splotches were gone but it's still considerably more red than normal.

So I decided it was time to either have a confirmation of my worst fear or have final peace of mind that it was just dermatitis... I've called so many breast specialists, oncology centers, hospitals, surgeons, etc. and no one would see me without a referal. My doctors wouldn't refer me but eventually I got through to a nurse and practically said I wouldn't leave them alone until I got what I asked for. A few minutes later I got a call back that they had schedulded an appointment for me at a local surgerical center. I went to their website and found this link: www.hickorysurgical.com/specialties-breast

So I called and was assured that the team of breast specialists was familiar with IBC (finally)... my appointment isn't until next Wednesday, though. I'm calling now actually to try and get worked in way sooner, just to ease my mind. I appreciate having a place to just talk about what's going on...

I was telling my husband this morning that I'm so scared to even go. I don't know WHY exactly... if I have something I want to be treated, if I don't I want to have this out of my life... but the anxiety is just ridiculous. I'm taking much more xanax than I ever have and it's really disrupting my daily life...

annab22100 · July 2013

I exactly know how you feel. The anxiety is so strong that can paralyse you. I am from Poland and sacred to death that I might have IBC, too. My left breast is red ( or pink ). No swelling, no itchiness, no nothing. But half a year ago i had a leakage from the breast, sometimes it hurts, one month ago I had watery leakage from both breasts. But I do know that it is something weird going on. I had my US done, clear. I am trying to make an appointment with any onco doc but in Poland it will take time. It seems that we both have just one symptom of IBC. I do hope we only have some kind of skin irritation or dermatitis. Please take care. I understand your fear, the fear for the unknown is the worst thing. I am also scared if any doc here, in my country will find out. They usually say that if your US is clear, no panic. I know it is not like that, we all know.

Onic28 · July 2013

Annab, I am thinking of you!! I am not sure how it is in Poland, but I found a very interesting resource yesterday.

I was really upset and not wanting to wait another week to see a specialist so I called a local hospital and asked to speak to their breast cancer center. The lady who answered the phone was very, very helpful and passed me along to what I would call a "coordinator/counselor."

She listened to every fear I had, my entire history, let me cry, etc... she isn't a doctor but more of an advocate for women who are either diagnosed, going through threatment or like us, trying to eliminate the possibility of having it. She was aware of what IBC was and told me not to leave my phone that she was going to go consult with the breast specialist on duty and call me right back. It took about an hour because she actually ended up talking with a specialist who then consulted with another doctor.

Their consensus (of course they didn't SEE me, only listened to my symptoms), was 1) a mammogram or ultrasound wouldn't be very helpful because of the type of cancer I'm worried about and my age (i'm 22), so they recommend me keeping my appointent with the specialist who will more than likely do a breast MRI and a second biopsy if needed. Because my first biopsy came back showing dermatitis, they're confident that my condition is coming from that... but, again, that doesn't really ease my mind because while I don't doubt I have eczema, this doesn't look just like eczema.

My point in all that though was there are people who are advocates for women like us that I didn't know about. This lady I spoke to, her name is Kim, gave me her cell, home and work number and told me I could call her day or night. When I told her what specialist I was referred to she knew exactly who he was and assured me that I would be in good care...I researched him myself before talking to Kim and found out his background, and she knew much more of his history than I could find online. She of course went through the whole, "Odds are you do NOT have this, but good for you for being proactive, etc. etc." which does sound comforting but doesn't relieve that nagging, "What if...," but it DID show me that there are people out there who solely work to promote and advocate for women who feel like they are fighting an uphill battle.

Aside from ladies on this forum, Kim was the first person to really say, "You know what? I completely understand why you're scared. I'm not going to stop helping you until we know what's going on." She got my number and told me she'd call me to see how my appointment goes and I really believe her!

If I were you, I would see if I can find someone like that near you. Call a breast cancer foundation that spreads awareness, etc. and see if there is a counselor/advocate who may be willing to "take you on" and help you push forward. Often their contacts are much better than what we can find online.

In the meantime, I have taken some advice from Bon and I am building a personal medical file... I've called each doctor I've seen to request copies of my charts, I've called the pharmacy to get a list of every perscription I've been given since my symptoms appeared and I've got copies of all pathology and bloodwork results. When I *do* see the specialist, I am going to be prepared so that I can get this over with as soon as possible!

Please keep us informed, I am praying for you!

annab22100 · August 2013

I do appreciate all help, prayers and advice you are giving me. I know that you have the right to be scared. I would be, too. We know that sometimes the first biopsies are ok but something keeps going wrong. And you of course know yourself, your body and you feel it is not ok. My redness is slightly disappearing, but i read that this can come and go etc, so it doesn't ease my mind. I will do my best and according to your precious advice, i am going to find someone like the advocate you have mentioned. I am 30 and I have a 5 year old son ao I must be a fighter, but sometimes the fear can paralyse us. God bless you, take care and keep me informed, please.

Warm hugs.

Onic28 · August 2013

Getting very nervous... my appointment with an oncologist/breast specialist is in two days. This morning I called trying to get worked in earlier because of my nerves but they couldn't get me in sooner.

The nurse on the phone was so frustrating... "a biopsy would have shown, why didnt you get a mamogram at your OB-GYN first?" ... so many of the same questions that make me so scared I'm not being seen by someone who know what they're doing

annab22100 · August 2013

Unfortunately there are docs and nurses like that. It is easy for them to treat a patient this way when they are healthy themselves. No empathy at all... I really understand your feeling , fears. It is not easy at all. please write and i hope i would be able to comfort you. Big hugs.

Onic28 · August 2013

Well I did make it to my oncologist appointment last week. The doctor looked me in the eye and said, "This is not breast cancer. It is not IBC. 100%, you do NOT have cancer." which made me feel okay, except he didn't do a biopsy so I don't know how he can say that.

Tonight I feel like the breast I'm concerned about is firmer than the other... my husband thinks I'm crazy, and maybe I am.

I'm feeling so discouraged.

alicki · August 2013

Hello,

What I recommend is that you go forward until you feel really reassured. It has taken me 5 Breast surgeon oncologists doctors, 4 ultrasounds, 1 MRI and 1 Mammogram to finally get the biopsy I need to feel at ease, whatever the result may be. It's your body. I'm not in the US but why not travel to a clinic where they know what IBC looks like.

Remember, you are your best advocate.

Warm wishes,

Alicki

Need advice - young and very afraid.

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