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Mom is showing almost all signs of IBC and Im scared.

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mik93
mik93 Member Posts: 20
edited July 2021 in Not Diagnosed But Worried

Good evening all,


I hope I am not being insensitive by posting about this considering we don't have a diagnosis yet but based on what google and many here have reported, I fear my mother has IBC and I am so deeply terrified.


In May 2020, my mother (48F, black, diabetic, perimenopausal, no family history) hit her right breast against an object which caused near immediate inflammation, swelling, erythema, some skin pitting, heat, throbbing pain, and itchiness, which subsided after some months (there was also a minimal bloody discharge at this time). The symptoms minus the discharge reappeared after some months and again, disappeared. For the last 7 or so months, my mother's breast has slowly but continually swelled up until the last 2 weeks where on the top of the already swollen breast, she's had strong itchiness, erythema, heat, and pitting (she believes this was brought on by heavy lifting).


She's been put on Clindamycin for the last 3 days and there have been little to no changes since. Her ultrasound (twice) showed some micro calcifications and an indistinguishable mass but NO abscess. As well, her blood inflammatory markers are not up nor is she feverish in any way.


The ONLY shred of ignorant hope I cling to is that this exact occurence (swelling in the same area) has happened multiple times and has resolved itself but this time the swelling has been present for ~7 months has not subsided at all. And the last two weeks essentially align 80% with all signs of IBC.


I know you all can't diagnose and I wouldn't ask but if anything, I guess I'm a desperate son looking for hope.


Thank you in advance for reading and anything you might be willing to share.

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,861
    edited June 2021
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    mik93,

    I do not have IBC myself so am no expert but it is my understanding that IBC does not come and go. Once symptoms appear, progression is often very rapid. A punch biopsy seems to be the best diagnostic tool for IBC. Beyond that, I hope someone who is more knowledgeable about IBC comes along soon. Take care.

  • alicebastable
    alicebastable Member Posts: 1,945
    edited June 2021
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    It sounds like she needs a referral to a wound clinic. Diabetics can have problems with healing.

  • LivinLife
    LivinLife Member Posts: 301
    edited June 2021
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    I do not know either though agree breast cancer symptoms does not typically come and go.... I"m glad you're mom has been following up on this. I hope there is a next step to evaluating given how long this has been going on... you mentioned ultrasound tho not recommendations that came from that. It's early since your mom started the Clindamycin too so they may want her on that a little longer before determining it's not helping??? What next steps are they talking about if the antibiotic doesn't help? Sending gentle hugs and support....

  • ctmbsikia
    ctmbsikia Member Posts: 756
    edited June 2021
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    I too don't think this sounds like IBC-non professional opinion of course. Breast tissue, especially injured tissues takes a LONG time to heal. I'm leaning more toward injury and slow healing due to the diabetes.

    I have fat necrosis adjacent to my tumor site. I also think I bumped it which made it inflamed and regular interval imaging led to a biopsy, and after biopsy received another abnormal score, so while I know what it is, it is taking forever to resolve or stop being pesky looking on test to get a normal report.

    Best wishes to you Mom.

  • mik93
    mik93 Member Posts: 20
    edited June 2021
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    @exbrnxgrl

    Thank you so much for responding.

    Reoccurance is essentially the only hope we're operating off, otherwise I see no other sources citing alternatives beyond IBC (especially considering lack of fever from an abcess/cellulitis perspective.)

    Mammogram, U/S, and Biposy are scheduled for Monday and Tuesday. I guess we'll know for certain near then.

  • mik93
    mik93 Member Posts: 20
    edited June 2021
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    @AliceBastable

    Thank you for your response. My mom has had a history of poor wound healing. I was wondering the same but the lack of fever/lethargy makes me think it isn't an infection.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,861
    edited June 2021
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    Don’t forget to ask about a punch biopsy. Usually very important for a dx or exclusion of IBC. Take care.

  • threetree
    threetree Member Posts: 1,385
    edited June 2021
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    Mik - I can't offer any more than the others have already said, and I think the slow healing due to diabetes possibility is a good point that many have brought up. Aside from that, I just want to say she sure is lucky to have you for a son! I had nobody nearly as concerned about my situation. So wonderful of you to help your mom so much.

  • threetree
    threetree Member Posts: 1,385
    edited June 2021
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    Just realized, Mik, that you could be a daughter as well as a son. I just got stuck on the "Mik" part. Sorry if I goofed.

  • threetree
    threetree Member Posts: 1,385
    edited June 2021
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    Mik and all - Never mind, you did say that you are a son.

  • mik93
    mik93 Member Posts: 20
    edited June 2021
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    @LivinLife


    Thank you so much for responding.


    She's since been instructed by the breast surgeon to have a mammogram and u/s on Monday followed by a biopsy on Tuesday and we should know by Wednesday.


    The doctor has said she has some swelling up her arm as indicated by the existing ultrasound though it's not conclusive at this time.


    The doctor said because the swelling has lasted for 7 months there "should have been more signs by now" that its IBC but they'll know for certain next week.


    She does not believe there is abcess anywhere so that kind of gets rid of mastitis or cellulitis so I can't conceive of what else it could be.

  • mik93
    mik93 Member Posts: 20
    edited June 2021
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    @ctmbsikia

    Thank you for taking the time to respond. I do hope this is the case. She'll be getting mammogram, ultrasound, and biopsy by Tuesday so we'll know for certain by then.

    Ultrasound on further review has shown swelling up her arm, some lymph node enlargement, and my mom mentioned she has difficulty lifting her arm above her head (she says this was after lifting heavy items).

    I'd assume muscle tear if it wasn't so aligned with IBC.

  • mik93
    mik93 Member Posts: 20
    edited June 2021
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    @ThreeTree

    I really appreciate the kind words. I love my mom, she is truly my best friend and I would do anything for her.

    She's given everything to myself and family and it's too difficult to comprehend such a cruel gift in return.

    Just hoping and praying another answer is given.

    But to your comment on not having that support, I will say, this is the most helpful forum I've ever participated in and even though we don't have an answer yet, I feel positivity and encouragement through each response here and in other posts. It's a very reassuring place to be, no matter where someone is in their journey.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,861
    edited June 2021
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    mik93,

    We have no quote reply feature and your responses do not appear after the comment you are replying to. New comments are simply added to the bottom of the thread. So, you can mention the names of all the people you are replying to in one message, i.e. Maryf, thank you for…, , April, I’m glad that you…

    If you choose to make individual replies please mention the members names so we know who you are thanking. Your last three posts are thanking members but we don’t know which ones!

  • mik93
    mik93 Member Posts: 20
    edited June 2021
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    An update: results for her 3D mammo have come in with doctor's notes (U/S guided biopsy tomorrow).


    Mammo found an ill-defined spiculated large mass measuring 4cm. Diffuse skin thickening. No microcalcifications. No fluid collection/abscess. Birads 4 somehow.


    Doctor's notes say highly suspicious of inflammatory breast cancer.


    Just stunned to be honest. She seemed to be improving over the weekend (day 4+ with antibiotics). Pain and itching gone, able to raise her arm over her head again, minor reduction in swelling and redness. There was a touch of hope there.


    But seeing IBC suspicion and "spiculating mass" written out after the mammo is just...intense.

  • alicebastable
    alicebastable Member Posts: 1,945
    edited June 2021
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    I'm so sorry! And how very unusual with symptoms that have come and gone for months. Has she been scheduled for a biopsy yet?

  • mik93
    mik93 Member Posts: 20
    edited June 2021
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    @Alice

    Yes, she will have her biopsy today. Just praying for a miracle at this point.

  • threetree
    threetree Member Posts: 1,385
    edited June 2021
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    Mik93 - So very sorry to hear how things seem to be going. For what it's worth, two doctors that I saw thought that my situation might be IBC, and even though after the biopsy, I still wound up having cancer, it turned out to be IDC instead. Not good at all, but probably better than IBC. Hopefully, even if it turns out that you mother does indeed have cancer, a similar thing could happen to her and it won't be IBC after all, but something maybe a bit less threatening like IDC. Fingers crossed and hoping for the best for your mom and you!

  • mik93
    mik93 Member Posts: 20
    edited June 2021
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    @ThreeTree


    Thank you for your well wishes. Do you mind if I ask how your symptoms manifested?


    If cancer is the case, I also hope it is a "less threatening" variant but based on the symptoms, it's hard to consider that likelihood.


    What's difficult to accept is how if it was IBC, shouldn't things have gotten terrible by this point, 7 months out (not even considering the 2 recurrences previously)? Or maybe it was IDC the entire time and IBC has come on as a secondary manifestation in the last few weeks?

  • threetree
    threetree Member Posts: 1,385
    edited June 2021
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    Hello Mik93 - I don't mind sharing my symptoms, but it is a bit of a long story that I'll try to keep as short as possible. When I was 19 (48 years ago!), I had a small lump excised that they told me was a benign fibroadenoma. They told me not to worry and that I was at no higher risk than anyone else for breast cancer. Through the years, that spot always remained "odd". I had a scar from the incision and the area was hard and lumpy and sometimes painful. I was told that it was scar tissue and nerve damage that were causing my problems and not to worry.

    Fast forward many, many years later, the area seemed to have changed a bit and I noticed I couldn't wear a bra style that I had worn for years, as it cut over a hardness in that same old area. I chalked it all up to aging, "sagging", and probably changes in the old scar tissue due to aging, etc. In the fall of 2017 I noticed a very smooth emerging piece of tissue over the old scar. It did not look "foul" or "nasty" in any way and I assumed again that it was something going on with the old scar tissue, and even started to think I might be developing a new fibroadenoma or that they had not gotten all of the original one when I was 19 and that it was growing again. I didn't go see a doctor, largely because it was the same old spot and I'd been told multiple times that anything going on there was due to the old surgery. I also looked at photos of tumors emerging through skin on the internet and none of them looked anything like what I had (that was "just in case"). For some time I remained convinced that this was all related to my old fibroadenoma.

    In 2018 I became more concerned as the mass was continuing to grow and I had swelling and dimpling (they call it peau d'orange for "orange peel skin" a la IBC), but the mass was still very smooth. I started putting all sorts of home remedy type stuff (raw honey and various lotions and potions) on it and continued to assume that it was not cancer. It started to bleed, but I chalked that up to the honey, as it is known to draw fluid out of wounds. However, since it was growing, I began having difficulty sleeping on my side, I got a real bad flu (rare for me) in the late winter of 2018 and it turned into pneumonia (very weird for me). I began to wonder if all of this wasn't connected and that if I wasn't in a much deeper hole than I was allowing myself to imagine. I was also dragging a bit energy wise, but also chalked that up to aging. At one point, I thought it might be an infection. At that time I also had a sinus infection for which I was given anti-biotics, and in addition to clearing up my sinuses, some of my breast troubles also seemed to clear up (thinking of your mother and the antibiotics). I finally decided that whatever the mass was, it was growing and would have to come out, cancerous or not. Part of my breast was red, there was the dimpling, and then what looked like a smooth keloid type scar on top of my old incision. Again, it did not look nearly as large and/or nasty as the pictures one can see on the internet.

    I kicked myself in the behind one day in June 2018 and went to see a doctor, all the while trying to tell myself it wasn't all that serious. She took one look at it and said it was breast cancer, and alluded to it being very serious and probably IBC because of the swelling, bleeding, and dimpling. I suggested the possibility of an infection and trying another course of anti-biotics and she did not think that would be wise at all. She made arrangements for me to see a surgeon, etc., but then I cancelled all the appointments, as I just could not wrap my head around the idea of having cancer, much less IBC. I simply went home and stewed about it all for about 3 more months. Then one day when I was sitting at the computer, I had pains in my chest, I felt completely wiped out and worn down, thought I might be having a heart attack, but that whatever it was, something was terrible wrong with me and I needed help immediately. I went up to the local emergency room and they checked out my heart, but decided the chest pains were costochondritis and not serious. I told them that since I was already there, I would appreciate their take on my breast issue, so they looked at it and did an ultra sound, but made no final conclusion at that time. The ultra sound did note how whatever was going on was in the exact same spot as the old biopsy that could still be seen, from when I was 19. One of the doctors thought there was a lot about it that did say "not cancer", but they all said what I needed to do was see a surgeon.

    This time I did not cancel appointments, but went to see the surgeon (fall of 2018), and the rest is essentially history now. He did the biopsy and it was a punch biopsy because he too seemed to be thinking along the lines of IBC because of the appearance and bleeding, etc. The pathology came back as IDC, 5cm, stage 3, grade 2, ER/PR+, HER-. I did neoadjuvent chemo, surgery, proton radiation, and now take Letrozole, and am happy that I am still here. Life is definitely not what it used to be, but it is life, and I continue to enjoy friends and family and many other things.

    I think there really is hope that your mom will have some success!

  • mik93
    mik93 Member Posts: 20
    edited June 2021
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    @ThreeTree


    Thank you so much for sharing your story. I'm truly sorry that ended up being cancer but am also thankful you are able to continue to enjoy life in good spirits.


    I find it interesting you were finding relief with antibiotics yet not complete resolution. That seems to align exactly with my mother's current situation. I also can't find literature on IDC presenting in an inflammatory manner; I guess google doesn't tell you everything.


    What a journey that must have been for you but at least you have answers now and were able to start healing. If you were able to have it growing for a year+ and still kick its ass, I'm certain my mom can too if it ends up being the diagnosis.


    In any case, I really appreciate your kind consideration to my mother and her situation. Standing between logic and hope is just leaving me crazy so I guess all I can do is wait and see.


    Fingers crossed all will be okay. We will have a strong idea of where we stand in the next 2 hours.

  • threetree
    threetree Member Posts: 1,385
    edited June 2021
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    Mik93 - Your quite welcome for the info on my situation. I really like your analogy of "standing between logic and hope". I've never heard that before. In my case, I think I was standing between logic and fear, and that can "just leave you crazy" too, but what else can a person do? I think standing between logic and hope though, is far better than that of logic and fear.

    I just wish all the best for your mother and you - sending real positive thoughts for you with fingers crossed!

  • mik93
    mik93 Member Posts: 20
    edited July 2021
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    @ThreeTree

    I appreciate the sentiment. Fear is definitely jumbled in there with the crazy but I try not to let that component take too much of my attention.


    Thank you for your well wishes. Actually, the ultrasound biopsy was done with unfortunately no updates yet. Need to wait 72 hours for results.


    The biopsy noted that the primary mass is seemingly fibrous and appears as layers of possibly scar tissue. There was also a hypoechoic mass with a hyperechoic center that was found in the right axilla, possibly an abnormal lymph node 1.3cm x 1.8cm x 1.5cm.


    ThreeTree, was your mass fibrous/like scar tissue? Do you have any idea if that is par for the course for IBC/IDC? I see a lot on IBC forming like sheets but no hard mention of scarring but I also see see tissue as an association with fat necrosis.

  • threetree
    threetree Member Posts: 1,385
    edited July 2021
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    Hello mik93 - Nothing in any of my pathology report or imaging used the term "fibrous". I'm no medical person and hardly an expert, but just off the cuff, I think I might have felt more comfortable hearing that term, as I would have thought again of something like a benign "fibro" adenoma, etc. The mention of scar tissue also, I would think would be initially encouraging in some respects. I was hoping for "scar tissue" and "fibrous", as that's what I initially suspected for myself, given my past history. I'm wondering more about your mother's original breast injury (hitting an object) and then possible difficult healing again (the diabetes? an infection?). Also, even if this does turn out to be cancer, it looks like they are seeing something of a solid mass, and it is my understanding that IBC does not present as a solid mass, but as a diffused sort of thing. Even if cancer winds up being in the picture a solid mass is better than not, from my understanding.

    I also had a swollen lymph node and some arm swelling as you mentioned your mother does. In my case the lymph node has never really amounted to anything and they determined that I didn't seem to have any node involvement, however, the swelling was indicative of lymphedema (initially from the tumor pushing on and causing damage in the area) that has gotten worse from treatment, but that I am so far managing reasonably well.

    It sure looks like there is something there in your mother's case, but it is looking less and less like IBC from my lay person's standpoint.

  • mik93
    mik93 Member Posts: 20
    edited July 2021
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    @ThreeTree


    Good morning!


    It would be quite the miracle if this ended up being some mix of scarring and inflammation.


    My big question mark is on the remaining inflammation. What could cause inflammation that doesn't show increased WBC count on blood test? All I see is that's a hallmark of IBC since it isn't bacterial.


    Did your blood test ever give indication of inflammation when your IBC like symptoms were manifesting? Or experience any fever/chills while the peau d'orange, redness, etc were occuring?

  • threetree
    threetree Member Posts: 1,385
    edited July 2021
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    Yes, good morning Mik93. I cannot think of anytime during my preliminary testing, diagnosis, etc where my white blood cell count was high. To the best of my knowledge there are more things than infections that can cause inflammation, and they wouldn't raise a white cell count. Most of us have chronic inflammation of some kind always going on in our bodies, that we fight off with varying degrees of success, and it's not necessarily due to infection. There are various foods, genetic situations, diseases, etc. that cause inflammation in the body without infection. Again, this is all just from my observations and experiences, I am no science person.

    Re the peau d'orange, while it is highly associated with IBC, I don't believe that it always means IBC. When I had my problem and was poking around on the internet I read that the condition merely means there is a lot of fluid in the tissues. It doesn't necessarily mean it is from IBC, although it more often than not is.

    While you are helping your mother, which is a wonderful thing, are you also getting some support and breaks for yourself? These things are really hard on everyone in a family, and I hope you are taking some "you time" also. Just talking about what you're going through with friends, taking walks, catching a movie, etc can really help - it doesn't have to be any sort of formal or professional help; just some "time outs" once in awhile to do your own thing. I also hope your mother is finding some time to enjoy some of life and other things in the midst of trying to find out just what her problem is.

  • mik93
    mik93 Member Posts: 20
    edited July 2021
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    @ThreeTree

    I agree with your points on inflammation. There are some reports here of peau d'orange for benign or non-IBC situations. You'll have to forgive me for all the questions. I'm still at the part where I'm trying to build the perfect answer to everything and using others' validation for the glue to keep it all held together. This wait is oppressive.


    As for myself, I actually haven't talked to anyone about it. I fear telling others and making the anxiety to all this "real," in a sense. I'm working on it.


    My mom is back to her usual self. Gardening and what have you. Her faith and resolve is unshakeable. Weirdly enough, her swelling, peau, and redness have gone down considerably after yesterday's biopsy. It's lightened spirits around here I think.


    I will say, seeing how you all manage to handle this every day, with strength for yourself and to help others truly is an amazing thing to see. If cancer is the case, I know my mother will be amongst countless beautiful people in this forum.

  • threetree
    threetree Member Posts: 1,385
    edited July 2021
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    Mik93 - No need to ask forgiveness re all the questions. I just wish I had some solid answers for you, but I am just "one more" and a non-expert at that. I can totally relate though to having all those questions and looking everywhere for answers. I was doing the same thing for myself (and still do!) when all of this happened to me. You want validation and confirmation from so many sources, so that you can be sure, and hopefully find a way and information that says the situation isn't all that serious. I think it is a normal reaction to anxiety and fear of the unknown. It's a reaction also based in hope and I think that's a good thing.

    I can also understand your reluctance to discuss your mother's situation with others whom you know. I kept everything to myself for a long time, while I searched and pondered and wondered and did it all over again multiple times. I just had to know what was going on for myself first and be able to wrap my head around it (at least a little bit) before I told anyone else. I still don't tell my friends and family everything, just generally how things are. Glad too that you mother is enjoying some routine and regular things in her life, like gardening, while all of this plays out.

    Please let us know how things turn out; hoping for the best. There are so many here willing to help if you need it and who wish you all the best.

  • mik93
    mik93 Member Posts: 20
    edited July 2021
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    @ThreeTree

    I appreciate the wise and kind words. Fear of the unknown is just something I've always tried to fight against. Maybe there is a lesson in here for me to change my ways.

    As well, if you have anything heavy on your mind, feel free to reach out if you want to unburden yourself.


    Again thank you for your kindness and consideration to our situation.


    And an update for any interested: swelling, redness, peau d'orange, and lump/mass prominence have again reduced considerably overnight. What was once affecting her entire breast is now down to about ~40% of her breast, lump feels less "dense." We don't know what's going on but we will take it of course. Still holding our breaths for biopsy results.

  • threetree
    threetree Member Posts: 1,385
    edited July 2021
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    Thank you, Mik93, and so glad to hear that your mother is improving.