Terrified of IBC

Options
Anonymous
Anonymous Member Posts: 1,376
edited August 2020 in Not Diagnosed But Worried
Terrified of IBC

Comments

  • Astern
    Astern Member Posts: 6
    edited August 2020

    Full disclosure and it’s a long one. In December of 2018 my mom passed away of liver merastes after being cancer free for 13 years. I’ve always had health anxiety but I think it’s more prevalent now after all that I watched my mom go through. A couple of months ago I noticed this line that is like a long vertical indent. After being blown off by different people my doctor ordered an ultrasound. All came back clear but this dent is still there. Also my other breast skin a showing skin changes as well. I have large breasts but I can see what I think looks like peau d Orange on both breasts. I saw my Obgyn yesterday and he said he couldn’t see what I was seeing and said it didn’t look Leah d orange to him he also felt for a ill art lymph nodes and he didnf feel anything. I have an appointment for a breast clinic a month from now. I’m just very scared. Can anybody tell me what their first signs of IBC were how prominent is peau d orange? If I had it would my doctor have been able to tell

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2020

    Bilateral IBC is pretty much unheard of (a radiologist here said he had only seen a single case written up in all the medical literature.) The fact that you think you see peau d’orange on both breasts (which at least one of several doctors you have already seen does not see) right there pretty much makes it unlikely, as would the fact that IBC would alsolikely be pretty much unmistakeable and extremely advanced after several months. I’m sure you have looked at pictures of IBC. I’ll bet whatever is going on with you does not look like them.


  • Moderators
    Moderators Member Posts: 25,912
    edited August 2020

    Dear Astern,

    We are sorry that this worry has brought you here. IBC frequently comes up in google searches when researching breast changes. That along with the loss of your mom can certainly make one anxious. It sounds like you are doing what you can to get to the bottom of all this. We hope that your appointment with the breast clinic will bring you some peace of mind.

    The Mods

  • blue22
    blue22 Member Posts: 280
    edited August 2020

    Hi Astern,

    IBC is rare, IBC in both breasts is almost unheard of. I think the pictures of peau d'orange can sometimes be misleading and sometimes a breast can look similar to what you are seeing online but it is not actually peau d'orange. I don't know what the dent is, is it always there or does it come and go.

    I see many posts here from people who think they have IBC, and most do not.

  • Astern
    Astern Member Posts: 6
    edited August 2020

    I’ve noticed skin changes the past couple of months. I first went in and had an ultrasound on the right breast. There’s a dented line that goes from the top all the way down underneath that breast. The ultrasound was negative. I always have had larger pores on my breast but recently is when I’ve noticed the peau d orange look that my obgyn couldn’t really see. He also felt for lymph nodes and said he didn’t see anything that looked bad and was comfortable waiting for me to see the breast clinic next mont. There isn’t any swelling or pain just the dimpled appearance on both breasts. I’m also now noticing the same kind of indent on my left as my right. It’s just nerve wracking seeing changes that other people can’t really tell when I know it isn’t my normal. I just don’t want to wait until it’s too late to get a diagnosis if there even is one to give.

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2020

    Astern, how old are you? Have you gained or lost weight recently?

    You say these changes aren't "my normal" but breasts change as we go through life and your normal at one point in your life will not be your normal at another point in your life. The fact that these changes are taking place on both breasts suggests that something other than IBC - which progresses quickly and almost always is unilateral - is causing the changes.

    Here is a list of 8 common symptoms of IBC. You have one symptom - and your doctor doesn't even see it. So the signs don't point to IBC, although I understand your need to find out what's going on

    Inflammatory breast cancer doesn't commonly form a lump, as occurs with other forms of breast cancer. Instead, signs and symptoms of inflammatory breast cancer include:

    • Rapid change in the appearance of one breast, over the course of several weeks
    • Thickness, heaviness or visible enlargement of one breast
    • Discoloration, giving the breast a red, purple, pink or bruised appearance
    • Unusual warmth of the affected breast
    • Dimpling or ridges on the skin of the affected breast, similar to an orange peel
    • Tenderness, pain or aching
    • Enlarged lymph nodes under the arm, above the collarbone or below the collarbone
    • Flattening or turning inward of the nipple
    https://www.mayoclinic.org/diseases-conditions/inflammatory-breast-cancer/symptoms-causes/syc-20355413



  • Astern
    Astern Member Posts: 6
    edited August 2020

    I’m 28. I have gained weight the past few months. I have one swollen node about 2.5 inches above my collarbone. It isn’t big I can feel it but can’t see it just looking at me. It’s been there for a little while hasn’t changed size or anything probably 1 cm. I’m hopeful that I’m having benign changes and that my appointment next month will put me at ease. I’m just scared. And I know google is the worst place to look for anything like this but IBC has been the main thing to keep popping up basically any type of breast cancer is what keeps showing for symptoms.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited August 2020

    I don't see weight gain listed as a symptom, why do you think it is connected? A node above the collarbone means on the top side of it, not two and a half inches above it. You might see an ENT specialist for that.

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2020

    AliceBastable, I asked about whether Astern had a weight change.

    A weight loss or gain could explain some of the changes that Astern is seeing in both her breasts, which she is attributing to IBC.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2020

    As in stretch marks, not cancer of any kind...

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited August 2020

    Beesie, okay, I see what you mean. Yep, I remember being freaked out by stretch marks when they first appeared decades ago. Somehow, I didn't think they were anything but stretch marks. 😀 Life was easier before Dr. Google was around.


  • Astern
    Astern Member Posts: 6
    edited August 2020

    update. Still no appointment at breast clinic until 09-11. Two Supraclavicular nodes swollen. Dr felt and didn’t seem concerned. 1/2 cm and movable. Neck pain. Ct scan showed inflamed tonsil which I was prescribed antibiotic for but no mention of supraclavicular area that the doctor even pointed out was inflamed Donnie I’m worried that the area was missed. Dr Google has me in a pretty dark place recently. I’m afraid every day. I do see a therapist and take medication. For anxiety. I don’t enjoy being so scared all of the time but it isn’t something that I can help.

  • wrenn
    wrenn Member Posts: 2,707
    edited August 2020

    Visiting a cancer forum instead of an anxiety forum when you have health anxiety is making your problem worse.

  • Astern
    Astern Member Posts: 6
    edited August 2020

    You’re probably right not the place for me I guess. I’m very sorry. I won’t post on here any longer. I wish everyone the best on their journeys. I’ve read a lot on here and you all have incredible strength.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2020

    Astern - wishing you well as you handle your anxiety.

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2020

    Astern, a breast cancer forum is the right place to post when someone has breast concerns. However since you've seen a doctor who doesn't even see the same breast symptoms that you see, and since the breast changes you describe are bilateral and therefore unlikely to be breast cancer, it's probably the case that your bigger health issue is anxiety and not anything related to your breasts. You should of course get any breast concerns checked out - as you are doing - but given your health anxiety, continuing to google about breast cancer and breast conditions, and reading a breast cancer discussion board, is only fuel your anxiety and make the next few weeks much worse for you. What you need to do is put all things breast related aside for now, knowing that you've seen two doctors who are not concerned, and that you will be seeing the breast clinic in September.

    I wish you the best of luck in dealing with the anxiety. And if the breast clinic identifies breast concerns that need to be investigated further, of course come back here for information and support.

Categories