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I am so scared this is IBC! Please read!

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Sclayj
Sclayj Member Posts: 8

Hello all,

I have a light red/pink splotchy patch on my breast and I am so scared it is IBC! I went to the dr who gave me antibiotics--told me it may be an infection and to return in two weeks if it didn't go away and we would talk about next steps (possible biopsy). Three days into the antibiotics and it's not going away and I can't stop freaking out!

It is not hot to the touch, not painful. Just a smooth, redness. No rash. No itching. I have no other symptoms.

I doubt it's mastitis as I haven't breastfed in 3 years.

I am just so scared and paralyzed with fear. What else could it be???

I can't have IBC. I have MS and am undergoing a stem cell transplant for that in January. Please please please don't let me have IBC too!

Any advice or words of reassurance greatly appreciated. I can hardly function I am so scared.

[Photo removed by Moderators to protect poster and as a matter of board policy regarding explicit pictures - sorry]

Comments

  • Akevia
    Akevia Member Posts: 45
    edited November 2014
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    Hello Sclayj

    It doesn't look like IBC , but of coarse we can say that for sure here. Just make sure you follow up with your Doctor. Everyone is different and have different symptoms, mine were textbook. That's how I self diagnosis because it wasn't any doubt. Try to relax as much as you can and make sure you get that biopsy. Goodluck

  • Sclayj
    Sclayj Member Posts: 8
    edited November 2014
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    Thank you for responding! I am a nervous wreck. (It doesn't help that for years I went to the dr worried that I had MS and they dismissed me as anxious, and 15 years later I was diagnosed with MS. I am all about pushing for my health care now!)

    I just cannot stand the wait. It's excruciating! I must look at my breast in the mirror 100x a day.

    I just don't know what else the redness could be from. No pain, no swelling, no nothing but this lightish pink spotchyness. Of course there are no websites for redness for no reason, only websites for redness for breast cancer.

    I don't know how I am going to get through the next few weeks!

  • Akevia
    Akevia Member Posts: 45
    edited November 2014
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    Trust me it's a lot of women come on this site with the same issue and it's not IBC. The problem is once you google redness of the breast IBC comes up and people are freaked out. Yes, I agree you have to push for your own healthbut stressing will only make things worst. I understand what you're going through but try to relax.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    edited November 2014
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    Hi,

    I understand that you are worried but no one here is qualified to diagnose you. Even a doctor wouldn't diagnose you based on a photo . You are doing the right thing by seeing your doc, finishing your antibiotics and then following up. IBC is an uncommon form of breast cancer, so chances are you don't have IBC. Lastly, the moderators strongly suggest that you not post pictures, so you might consider taking your pic down. Best of luck to you

  • Sclayj
    Sclayj Member Posts: 8
    edited November 2014
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    Oh, I know no one can diagnose me. I am going to follow through with doctor's orders, but the path is long and terrifying. In lieu of getting answers now, I was just hoping for some reassurance and support. This is so scary!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    edited November 2014
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    Well your reassurance should be the knowledge that IBC IS is rare. Please take the mods advice when they say that posting of pics is not recommended. Best wishes.

  • moderators
    moderators Posts: 8,282
    edited November 2014
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    We are sorry you have this scare but you need to give the antibiotics time to achieve something and they may not be the correct antibiotics. Rashes like this can be caused by many things from local reactions to nervous or other reasons like hormonal. Please do not jump to a breast cancer as Dr Google tends to indicate for such rashes. Follow your doctor's directions and try to stay calm (easier said than done, we know) and give the drugs a chance to act.

    We wish you the best results and a simple clearing up after the antibiotics kick-in.

    Also: Please do not post photos of your breasts as they will be removed.

    The Mods

  • Sclayj
    Sclayj Member Posts: 8
    edited November 2014
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    Thanks Mods--apologies for posting a photo, I just wanted visual reassurance.

    Question: what else can cause this splotchy pinkness? My dr only suggested Mastitis, but I seriously doubt it's that as I have no fever, etc.

    I am on the progesterone only birth control pill, and didn't have a period for about 5 months (common on that pill). Last week I got a period and my breasts hurt a lot (normal premenstrual pain, both breasts). So maybe it could be hormonal??

    It's just so hard when the only thing the internet points to is IBC. And there aren't many photos that I can compare to as the pics of IBC tend to be very advanced.

    I didn't call the redness a "rash" because it isn't raised at all or itchy. It is truly just pinkish skin, soft to the touch and not warmer than the rest. Splotchy though, blanches when pressed.

    I'm going crazy with this!

  • moderators
    moderators Posts: 8,282
    edited November 2014
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    We are not doctors and has already been said, no one can diagnose from pictures. There are lots of causes but the internet seems to always direct to IBC for rashes or bruises - scares a lot of people unnecessarily.

    As you hormones are in flux, it may be the cause but we can't say as every person is different.

    We wish you the best and hope you can calm down. Just give it some time for drugs or hormones to settle it down.

    The Mods

  • Ariom
    Ariom Member Posts: 4,027
    edited November 2014
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    Hi Sclayi, firstly take some deep breaths and think about how you came to be here. You used a google search for a rash or skin irritation and it took you straight to IBC, which is so rare, it only makes up 1-5% of all diagnosed breast cancer. Why it goes there is beyond me, when there are so many other far more likely causes. We all know how terrifying it is, to get on the Breast Cancer merry go round, but you have to calm yourself and not go there, till you have to!

    Antibiotics can take some time to kick in and that is only if what you have, is an infection, it could just as easily be an irritation from something as simple as clothing, soap, or a new perfume. So many women come here with the same type of symptoms, only to find it is a completely benign condition. There are a few who have been diagnosed with IBC, like Akevia, who will tell you, the stressing will do nothing for the outcome, but it may make you ill. I am not trying to minimize your experience, I know how scary it is, but you are doing everything right, your Doctor is following the right path and will order whatever is needed if you don't resolve this, with the antibiotics.

    I wish you all the best..let us know how you're getting on.


  • kicks
    kicks Member Posts: 319
    edited November 2014
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    There are MANY possibilities for skin issues. You might want to see a Dermatologist.

    IBC is only between 1% - 5% of all DXd types of BC. It everyone who has decided they are IBC because of redness/rash were IBC, it would be the most common type of BC (which it clearly isn't).

    (Oh - by the way, I am IBC and never had any redness/rash.)


  • Sclayj
    Sclayj Member Posts: 8
    edited November 2014
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    Thank you all so much for taking the time to respond to my post. I will try try try to not jump to the worst possible scenario, and will update as soon as it is resolved one way or the other!

    You are all amazingly strong women!

  • Sclayj
    Sclayj Member Posts: 8
    edited November 2014
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    Me again. Still freaking out!!!

    Tomorrow is the last day of my 10 day course of antibiotics and the red spot it still there. It might have faded a bit, and actually looks lighter and darker at different times of the day.

    I see my doctor on Monday for a follow up, but in the meantime I am JUST SO SCARED! I can barely function!

    I have searched everywhere online for a benign reason for the red spot. I doubt I have mastitis as I am not breastfeeding and the antibiotics aren't working. I haven't been using any new detergent or soap or anything. The ONLY thing that is different is maybe my hormones are a little wacky, but I don't think that would cause a red splotch. Any ideas?

    Please help. Admittedly, I look at my breast at least 100 times a day--the fear is consuming me!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    edited November 2014
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    please, please stop the googling. I'm not sure what any of us can do to help nor am I sure about why you keep leaping to a worst case, yet unlikely, outcome. Breathe deeply, meditate, do yoga or just have a good stiff drink. You'll be consulting with your doctor very soon and consuming yourself with worry benefits no one, least of all you. Don't borrow trouble

  • Sclayj
    Sclayj Member Posts: 8
    edited November 2014
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    Wrenn, these boards are here for support. If you don't wish to give me support--whether it's telling me I shouldn't worry so much or just stopping to give me an internet hug--then you don't need to reply to my post. Simple as that.

    I am still concerned about my breast, a week after first posting and taking antibiotics that did not help. I am not going to apologize for that.

    Best of luck to you, and I do mean that sincerely. I certainly hope that you have a stronger support system than your comment alludes.

  • morwenna
    morwenna Member Posts: 204
    edited November 2014
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    Monday is just the day after tomorrow. Try to stop looking at your breast a hundred times a day. (I say that, although when I had a lump on my scar I was probably feeling it a hundred times a day also!)

    Anyway, tomorrow go somewhere, do something, be with someone that will give you something else to think about and actually make it hard for you to keep obsessively checking. One thing that probably makes the area red is checking/prodding it!

    Come on, you can do this. One more day, then hopefully you will have confirmation that your fears are unfounded after all.

  • Ariom
    Ariom Member Posts: 4,027
    edited November 2014
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    Sclayi, I am sorry you are still going through all this anxiety, but the one positive thing here is, there has been no real change to this presentation on your breast. From what I have read of IBC, from the few women here, who have experienced it, is that it moves very rapidly.

    The very worst thing you can do is this googling, you'll find yourself with all kinds of diagnosis, if you keep searching. The women here aren't trying to be harsh, but are trying to assure you that, the Dx you fear most, is the most unlikely Dx that you'll get and the stress you're putting yourself through, will just make you ill.

    We all know, how overwhelming the waiting can be, we all had to do it, some over and over. If there is any advice that we all agree on, is taking some me time, get involved in things you enjoy doing that will distract you from this, for a while. The stressing won't change the outcome.

    It won't be long now till you see your Doctor and you will have some answers. Try to take it easy!

  • bride
    bride Member Posts: 121
    edited November 2014
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    Sclayi,

    Slow down. No one here can say you do or don't have IBC. What we can tell you is that IBC is very rare: according to the American Cancer Society, there were 232,340 new cases of breast cancer in the USA. MD Anderson's stats are that there were 4008 cases of IBC in 2013. Personally, I loathe the fact that googling certain words brings up IBC. There are any number of things that may cause redness on your breast.

    You are clearly in a high state of panic. You might want to take a friend with you when you see the doctor. She or he will be able to take notes and listen to things you might not catch (this is standard advice for people who do have a DX of cancer, btw).

    Sclayi, you're taking our advice to calm down the wrong way. The odds are that you don't have IBC. And, God forbid, if you do have something serious going on, you will need your wits about you: within the first 3 weeks after my DX, I had MRIs, Petscans, Echograms, endless blood work, a operation to insert a port, and meetings with not only my MO but also my SO and RO. And, for what it is worth, I was also trying to wrap my mind around the fact that I not only had cancer but have IBC, something I had never heard of until my DX. Further, I was traveling just under 150 miles nearly every day to get treatment. Yes, I got tons of useful information from the women here. The most important bit was to learn how to take control of my situation. If a spot of redness is making you this anxious you're not helping yourself.

    Please relax for now. With literally an unlimited number of things that could cause your redness, your panic is only draining you needlessly. No one is saying you should ignore your breast; we are saying that you don't need to be overwhelmed. Please put your fear aside so that you can take a proactive part in finding out what is wrong.

    bride

  • alicki
    alicki Member Posts: 85
    edited November 2014
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    hello,

    Apologies for posting but I'm one who didn't take these ladies advice. My doc denied core biopsy and I went all the way to get a breast reduction to get some results. B9

    Ten months later I get headaches and because I am so anxiety ridden, despite doctors assiurance that my white spots on my brain aren't mets, I'm still freaked out.

    It will take me a long time to heal, so if I can give any advice ; go one step at a time, follow docs orders. It's when you jump ahead and let yourself consommed by the net, that it can break you into pieces.

    Be kind to yourself

    Alicki

  • AmyQ
    AmyQ Member Posts: 821
    edited November 2014
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    Sclayj,

    I agree with Wrenn and everyone else saying to calm down and take a deep breath. Your posts are frustrating and yes I don't have to read them or even respond, but you say you are looking for support. If that was the case, you'd not continue to rant and dispair. Several women have made excellent suggestions yet you continue to cause yourself undo hardship. 99.9% of us here actually have breast cancer and have been through hell. The odds are with you that this is not IBC. So please try to understand other perspectives, be patient, see your doctor tomorrow and let us know how it turns out.


  • kicks
    kicks Member Posts: 319
    edited November 2014
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    There are so many skin issues that can cause redness/rash, not only on the breast but other parts of the body.   As far as one round of antibiotics 'not working' - not all infections respond to every antibiotic.

    You have gotten nothing but support from everyone - some not IBCers but also from some of us IBCers.  Even IF (and that is a HUGE IF) you might be one of the few, it's not the end of the world.

  • Sclayj
    Sclayj Member Posts: 8
    edited November 2014
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    Thank you all for your replies.

    For those that think I am overly anxious about this--well, I probably am. I have spent the last 15 years being told that my MS symptoms were in my head, being sent to a psychologist instead of given an MRI. I was finally given an MRI in May and was promptly diagnosed with MS with countless lesions on my brain and spine. This has nothing to do with breast cancer, of course, but everything to do with my heightened anxiety about my health.

    So a sincere thank you for your replies.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    edited November 2014
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    Our previous medical experiences very clearly color how we deal with new medical situations. Though we make no guarantees, the chances of NOT having IBC are high. Try not to add to your stress because the odds are really in your favor as many of us have said.

  • alicki
    alicki Member Posts: 85
    edited November 2014
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    Scayli,

    I do understand that you have developed a mistrust in doctors - that's totally understandable. But try and find yourself a team you can trust. It is in the spirit of sisterhood i'm saying this because I feel ridden down with anxiety cos I wanted to play the hare and not the turtle.

    The most important thing is to get yourself a team you can trust. In my case, we never found out what caused the edema and inflammation and living with a non-diagnostic situation isn't easy. Cos it leaves plenty of 'what ifs' But one thing that I was assured by people I trust, is that it was not cancer. Lupus perhaps said the biospy but the other markers never matched.

    Take care of yourself. I would hate to see someone spiral as I did. I ended up six weeks in a health clinic for my anxiety. Don't go that way and please feel free to come and look for support as much as you need it, I'll be listening as I am sure all other sisters will.

    Alicki
  • WinningSoFar
    WinningSoFar Member Posts: 126
    edited November 2014
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    I'm trying to think of what I tell myself when panic takes over.

    1. Feelings of panic are just feelings. They don't mean that something is really wrong.

    2. If I do have IBC, then I already have it. It's a done deal. My anxiety comes from adrenalin which is trying to take me out of danger. If I have IBC, it's too late for adrenalin.

    3. Women come to this thread ALL THE TIME who say they can't have mastitis or some other type of infection, and it turns out they do.

    4. If your red spot is staying stable or slightly improved after 10 days, that is more of an indication of infection than IBC.

  • bride
    bride Member Posts: 121
    edited November 2014
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    I understand your distrust of doctors but DXing MS is a lot more difficult than DXing most BCs. From what I've read on the MS webpage, MS can be present for years before a MRI, EPTs, or spinal tap can pick it up. I can imagine how frustrating getting a DX was for you. Hopefully, your exam today will be far more definitive than the long process you had to endure with getting your MS DX.

    I would add my voice to the chorus that states that IBC is something you can handle. I didn't think I could handle my DX of IBC, but I have -- with a lot help from this board. Please let us know what you find out, if you do have any type of BC, you will find lots of support and an incredible amount of good advice here. And, if you don't have BC, could you let us know? We're human, we worry, and many posters who do not have a DX simply disappear which leaves the rest of us worried.

    Wishing you the best,

    bride

  • AmyQ
    AmyQ Member Posts: 821
    edited November 2014
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    Scayli,

    How did your doctor visit go on Monday? Hope you feel better and have nothing to worry about.

    Amy

  • morwenna
    morwenna Member Posts: 204
    edited November 2014
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    I hope she comes back to tell us the outcome, not just leaving us hanging! :o