New symptoms, IBC seems way too likely now

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Hbee93
Hbee93 Member Posts: 17

Hi, I'm really afraid and am kind of going through this alone, so any insight or help would be wonderful.

Things started with a red spot, then a bruise where the spot was. The bruise is faded but still there, with a dark triangle in the middle of it. There is a lump under the bruise.

My breast is also swollen, and my armpit is sore.

Now, on top of all that, there are small bruises up the other side of the same breast.

To say I'm terrified is an understatement.

I have a mammogram and ultrasound scheduled, but I'm afraid it's inflammatory so they'll miss it.

Does anyone have any advice for insisting on a biopsy, or tips on how to deal with this?

Thank you :/

Comments

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2018

    Hbee, nobody is going to be able to tell you anything different than they already have on your other threads. When is your imaging scheduled? If you had had anything remotely resembling IBC when you saw the doctor you would have had an emergency referral. Small bruises sound nothing like IBC, and could even be from your fingers obsessively examining your breast. There would be no "missing it" by the time you have your appointment because IBC progresses very rapidly. Often in hours. The average age of onset of IBC is 60. You are getting way ahead of yourself. If there is anything that needs a biopsy you won't need to insist on one.
  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited April 2018

    Hi there,

    Being scared is completely normal and feeling and seeing a rapid change woukd tip many over the edge.

    Read this link...is itpossible re: fat necrosis?

    Hoping the best for you!

    https://www.healthlinkbc.ca/health-topics/hw51015spec

  • Hbee93
    Hbee93 Member Posts: 17
    edited April 2018

    Hi, I'm really sorry if I'm being annoying with my posts, I don't understand message boards very well. I appreciate the advice though, I'm hoping it's nothing to worry about, but with so many issues going on that coincide with IBC (swelling, bruising, pain, lump) I am pretty concerned.

    My appointment is on Wednesday, it was the earliest they could get me in. My doctor said because of my family history that it's best to be thorough so I'm hoping they'll do all the testing they can.

    I'll stop posting until I know more, sorry again.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2018

    Hbee93, I'm sorry you are scared. You aren't annoying, and it is fine to post, but starting more new threads with essentially the same info won't get you different answers. I'm glad your imaging will be done this week, and I hope there is a benign and simple answer to whatever is going on. Just try not to convince yourself of this being so dire when there are other more likely explanations

  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited April 2018

    HBee,

    I just don't want you feeling badly because you're worried. It is absolutely normal to feel that way and it's a very anxious time waiting. AsMelissa has said, hopefully you'll have a good explanation; bruising doesn't sound like cancer. Hang in there...

    As an aside, Melissa, I know three women with IBC, all of whom were 10-15 years under 60. So definitely it’s something everyone should be on the watch for. But Hbee, I agree that a couple things you’re saying don’t seem to jive with that.

  • Ada85
    Ada85 Member Posts: 20
    edited April 2018

    We all been there. It’s very understanding the feeling and thoughts going through your mind. If you have seen a doctor prior to these symptoms I’m sure they would have noticed and sent you off for emergency. Also remember our minds play a huge part in how we feel overall so the calmer you are (which I know is hard) the better your body will respond. You are putting your body through a mental shock and that’s not healthy. Given that you have a family history I’m sure your doctor will scan for everything. I know you feel anxious and want to get it over with but the best thing to do right now is try and keep your mind off it. Watch a movie, walk or even meditate. And try not to keep touching the area. If you really can’t wait for your doctor I would suggest going to the emergency to give you a peace of mind. Will keep you in my thoughts

  • Hbee93
    Hbee93 Member Posts: 17
    edited April 2018

    Hi, update to my situation: they did a thorough ultrasound and could not find anything of concern or the lump me and my doctor have felt. They said they weren't concerned about IBC or any kind of breast cancer and I shouldn't worry about it further.

    I just don't know if I should let it go and hope that the swelling and bruising goes away completely, or if I should find a second opinion... This is tough.

  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited April 2018

    for peace of mind, I would seek a second opinion. Why not?

  • Hbee93
    Hbee93 Member Posts: 17
    edited April 2018

    Only because second opinions cost money and my husband is honestly frustrated with this process, he doesn't believe there's anything to worry about. I would just like for it to be over.

  • LoriCA
    LoriCA Member Posts: 923
    edited April 2018

    Hbee93 I know it is very scary to suspect IBC but hope it helps to ease your mind to know that IBC doesn't usually grow as a lump, it grows in sheets or layers and that is why it's usually not detected by a mammogram. If you have a lump and the ultrasound didn't find anything concerning, including the thickening of the skin that is typical with IBC, I wouldn't worry about IBC. The lump and bruising may have just been from banging into something or some other physical trauma, especially since you said that the original bruise has faded. If the lump remains, it could make sense to get a second opinion but I would not worry about IBC.

    My IBC "bruise"/purple discoloration wasn't small multiple bruises. My entire breast looked bruised and the discoloration grew until it covered most of my right torso, from my collar bone down to my waist. It didn't fade until after I began chemo. The symptoms increased dramatically every day while we waited for the results of the biopsy and then multiple scans to confirm staging. My only "lumps" were the visibly swollen lymph nodes under my arm and above my collar bone. The skin of your breast would usually feel hot to the touch and swelling of the breast and lymph nodes are usually dramatic because IBC blocks the lymph vessels. There are usually visible signs of inflammation, hence the name Inflammatory Breast Cancer.

    When IBC is misdiagnosed, it is usually diagnosed as mastitis.If no one has mentioned the possibility of mastitis to you it likely means that your doctors are not seeing symptoms of either.

    A second opinion might give you peace of mind, but it honestly doesn't sound anything like my experience of IBC. Hope it turns out okay for you.

  • Hbee93
    Hbee93 Member Posts: 17
    edited April 2018

    Thank you LoriCA for letting me know that, it's helpful to know I'm not totally reflecting the normal order of symptoms.

    My doctor is still concerned so I'm going to see a surgeon in a week, but my worry has only grown in the last few days, as my breast is now hot to the touch, added to the swelling and bruising and pain throughout. I also have some redness and bumpiness spreading from the areola , so it just seems like things are ramping up and getting worse.

    All I can do is prepare myself and hope for the best, though with my anxiety and pessimism it seems impossible to have a good outcome here.

  • CMCARPE82
    CMCARPE82 Member Posts: 11
    edited April 2018

    Sending thoughts and prayers your way, hoping you get answers, please keep us posted as to what they find out.

  • Hbee93
    Hbee93 Member Posts: 17
    edited April 2018

    Just a quick reach out for some support:

    The swelling has gotten worse, and now there is a redness spreading from my areola. There's palpable heat coming off of my breast and the original bruising and lump have not gotten better.

    I am bracing myself for the worst, but I don't know how to make it through the next week waiting to see a surgeon, only then to find out I have cancer and have to go through the pain that comes with that.

    I just feel like I can't catch a break, considering I JUST finished having a miscarriage just a month or so ago. To now have this happening and never really getting to have time with my husband is just heart breaking.

  • bluepearl
    bluepearl Member Posts: 961
    edited April 2018

    While pregnant. your breasts start preparing for the baby. Is it possible the miscarriage is related to this...blocked ducts etc? So sorry for your loss too....not an easy thing and then get this happening. Hoping you come to a good resolution to this and you can move on. ((((HUGS)))))

  • Hbee93
    Hbee93 Member Posts: 17
    edited April 2018

    I had hope that that was the case but it continues to get worse even though the miscarriage was a month ago and I was only 12 weeks along at the time. Plus the bruising and heat doesn't seem to line up with any post-pregnancy issues I've heard of. Its just very hard to already be so beat down emotionally, then to be hit with this is just too much.

  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited April 2018

    Hbee,

    Yes, go in. You need to feel 100 percent assured. Listen to your voice. iBC has typical presenting traits, but you need to be sure. We’ll hope it’s infection.



  • Hbee93
    Hbee93 Member Posts: 17
    edited April 2018

    Update from panicking me:

    The rash from my areola is spreading and it burns, along with the swelling and bruising continuing/getting worse. I'm trying to be ready for what feels like an inevitable diagnosis, but I don't know what to do with myself in the mean time, I'm just a crying panicked mess.

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited April 2018
    When is your appt? Is there any way you can get in sooner? Can someone give you some anti-anxiety meds? Did they rule out mastitis?
  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited April 2018


    What is your family history, if you don’t mind me asking?
  • Hbee93
    Hbee93 Member Posts: 17
    edited April 2018

    My grandmother had the disease, and my cousin died at a young age from it. My appointment is Wednesday morning and but I have no idea when or if they'll do a biopsy.

    I don't think it could be mastitis because I don't have a fever and I'm not breastfeeding. Every day it seems to just be getting a little bit worse as well which points to a more insidious issue, at least to me.

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited April 2018
    I understand your anxiety, but please try not to think of the worst case scenarios. Remember, even if you have family history, it does not mean that you will have the same experience as your grandmother or cousin. Try to keep busy until Wednesday and let us know how your appt. goes. Take care.
  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited April 2018

    I would consult with dermatologist, endocrinologist an ob/gyn. It is quite possible that you have an infection and inflammation from being pregnant and suddenly not pregnant. For this to arise after a miscarriage, is suspicious, but not in a cancerous sort of way. Your prolactin levels and progesterone levels are all over the place, and you could have developed mastitis from milk being developed and suddenly blocked because of lack of hormones. The rash would be more indicative of an infection, with all of the other things that you have going on. I would be assured by what your doctors have already told you, and work with a counselor to get back on your feet. It is easy to let your mind go to negative places, after you have suffered a loss. Since the miscarriage, have you changed detergents, soaps, lotions, stayed in a hotel, tried new foods? What state do you live in and what is the weather like there?

  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited April 2018

    Please bring the OBGyn into the discussion. Hormonal levels after the miscarriage could be part of the issue. Your skin changes and you are not that far away from the trauma. My remaining breast hurts because of cysts and fibroids, so there are other breast tissue issues that are not cancer.

  • Hbee93
    Hbee93 Member Posts: 17
    edited April 2018

    Update: the breast surgeon did a thorough exam and was fairly sure it wasn't IBC. She did a breast biopsy just to be sure, which I'll find the results of on Monday.

    But with the redness spreading and the swelling continuing I'm not sure if I should let it go...

    But I've had 3 doctors be pretty confident that it's not IBC. Its just tough to know when to stop pursuing it :/

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited April 2018
    A breast surgeon would know what IBC looks like, I would think. Did she say what she thought it was then, if not IBC?
  • NancyHB
    NancyHB Member Posts: 1,512
    edited April 2018

    Hbee, it's so frustrating to have continuing symptoms and no firm diagnosis. Unless your biopsy comes back with IBC it sounds like that's not the culprit - however, *something* is going on with your breast, and you need to pursue whatever that is. It could be any number of things, from benign findings (like cysts or hormonal issues) to infections (cellulitis or mastitis) to something else. Since this started as a spot on your skin, have you considered seeing a dermatologist?

  • Hbee93
    Hbee93 Member Posts: 17
    edited April 2018

    Hi everybody, the biopsy came back negative, which is great! I really appreciate all the help and advice from everyone. I need to figure out what IS the problem, but to rule out IBC is a big step.

  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited April 2018

    that’s wonderful news!! You must be so relieved. You share some symptoms with Mastitis, and I’ve read women can have this when pregnant. So you never know. The rash around your nipple is what makes me think that. Can you share here what it is when you find out?
  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited April 2018
    Yay! Hope you find out what is it soon. Let us know when you find out.
  • Hbee93
    Hbee93 Member Posts: 17
    edited May 2018

    Update (AGAIN):

    so the swelling is still there, along with the pain, but now I'm having clear discharge just out of that side as well. It's seriously like I come to terms with one thing and another appears.

    Im not even sure if that's a concerning symptom, but now I have to wait for another doctors appointment and worry myself sick even more. It never ends 😩

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