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Not sure what to think

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angel980
angel980 Member Posts: 11

Hi, new member here.

About 3 weeks ago I noticed I was extremely sensitive in my left breast. I didn't think much of it until 3 days later, I was in the shower and felt a huge hard mass in my left breast. When I looked in the mirror, my breast was huge and I had a redish, purplish coloring that was quite large. I right away went to my doctor who was also concerned because my period ended 5 days prior and I haven't breast fed in 5 years. She prescribed me antibiotics and sent a referral for a mammogram and Ultrasound. the first 5 days my redness got worse, I started getting itchy and a couple of times it looked like I had white bumps from under my skin. After the 5th day my redness started to subside and my swelling went down. Two days before my last antibiotics I had my mammogram which came back clear and my ultrasound came back as ductal dilatation. My doctor said because that can be a sign of ibc, the radiologist left it open for my doctor and me to decide on the next step. She now has referred me to a breast specialist at the hospital.

My redness is faint but still there, I'm still sensitive and I've had constant back pain under left left shoulder blade, along with a dull ache in my front beneath my left breast.

The night before lastnight, I couldn't sleep because I had a constant throbbing on my left breast that was quite painful. The next morning I woke with the throbbing but then throughout the day, the throbbing turned into stabbing pain that had me doubled over. It would only last 30 seconds at a time but it was constant. It only lasted the one night and now the past two days I'm back to feeling my back pain and dull throbbing here and there. Not sure what to think because my redness and swelling isn't coming back to what it was.

Just hoping on some input from someone who may have experienced this and may know what's causing it.

Thank you

Comments

  • moderators
    moderators Posts: 7,915
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    Dear angel1980,

    We are sorry that these breast changes and the pain that it is causing have brought you here. We are glad that you reached out to our members to hear of their experiences. It is hard to say what might be going on here. Have you made an appointment with the breast specialist yet? Have your reported the ongoing pain to your primary doctor. We hope that others might offer some ideas but honestly most will say that you will have to follow through with your MD to get to the bottom of whatever is causing your pain. Please keep us posted on what you learn. We want to support you here and will appreciate knowing what you learn.

    The Mods

  • angel980
    angel980 Member Posts: 11
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    hi, I'm waiting for the breast specialist to contact me and I tried to contact my doctor with my new symptoms, but she's away for two weeks. I feel like my left breast looks larger than my right and I can still feel something behind my nipple. I'm just confused why the ultrasound didn't pick anything up if it was anything. I'm on day 3 of no pain but redness is still there, although very faint, so maybe no need for a specialist. I'm just not sure what's going on.

    Angel980

  • katg
    katg Member Posts: 206
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    Angel,

    I agree with the moderators. Even if your primary is gone, there are people, maybe a physicians assist or RN in their office.

    I originally had a throbbing in my breast. No outward signs, but a throb i figured was an old bra probably with no support. Until a month or two later when i felt the mass in my breast one June 20th, 2021. I was in the COH within a week had a biopsy and ultrasound and mammogram before that.

    Your symptoms need looking at. Your DRS. office is not a one man show. Also, a breast specialist is who i contacted after my referral from the primaries PA. Call them. Let them know your symptoms. I want to add i have Anthem insurance and checked the website for approved breast surgeons and found one at the COH. Breast pain is not always bad, but symptoms mean something is not right. Please get back to us on how you are.


  • angel980
    angel980 Member Posts: 11
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    Thank you for your comments!

    My appointment with the specialist is tomorrow so I'm really hoping she agrees to a skin biopsy, because it seems, from comments I've read, that's the most successful at catching anything.

    Angel

  • angel980
    angel980 Member Posts: 11
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    I had my appointment with the specialist yesterday. She did her exam and said she could see the discoloration, she could see my left breast is bigger than my right. She examined me and said my lump felt like normal swollen tissue and told me this is just an infection, and she couldn't do a skin biopsy because she didn't have a lesion to do it on. Every point she made about IBC, I corrected her on. I left feeling very dismissed in regards to all my symptoms and Nervous over the fact she can tell it's not IBC just by simply looking at me, and didn't seem to be knowledgeable on her information. She made it sound like its a one size fits all for symptoms. I guess it is what it is though, and now It either gets better or it gets worse. It's just the waiting game now I suppose.

  • edwards750
    edwards750 Member Posts: 1,568
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    angel - given your symptoms I wouldn’t play the waiting game. I would find a doctor who is knowledgeable certainly not one like that sorry excuse for a physician you just saw. She obviously didn’t know what she was talking about and that’s scary.

    I encourage you to find a reputable physician asap. Not trying to scare you because I’m not a physician but I can assure you I would act on it now.

    Diane

  • angel980
    angel980 Member Posts: 11
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    update* I had my follow up with my doctor last week. She is agreeing with the specialist. She didn't even look at my breasts or do a check. She said because I don't have the peau d'orange symptoms it's not IBC.

    I still have faint discoloration, I'm still getting intense deep shooting pains that come and go and sometimes feel pain shooting up along me breast by my armpit. She tells me this is all normal from mastitis. I feel like somethings not right and I'm going to get a second opinion but I am confused at the fact that my breast was so swollen and discolored at the beginning and just staying faint now. If it was that bad previously, would it stay faint or would it be getting worse? And if it's mastitis, as she says it is, wouldn't it be gone by now, after 2 months?

    Either way I'm still going to get a second opinion cause somethings going on.

  • purplecat
    purplecat Member Posts: 226
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    Breast changes are so stressful! I hope you can get satisfactory answers very soon from a practitioner you trust.

  • angel980
    angel980 Member Posts: 11
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    Another Update* it's been 10 weeks and I'm still looking for answers. My discoloration is still the same, still faint but not going away, my pain comes and goes so some days when I don't have pain I think I'm crazy and everything must be fine but then the days I have pain, I feel like my instincts are screaming at me somethings not right. My pain is getting more constant and is always in the same spot, and I now have a dull ache in my armpit and side of my breast.

    I went to a different doctor and got a second opinion and he is sending me to a different specialist for another opinion. He says he could feel my armpit lymph node might be swollen. He also said this time they can look at it in a different viewpoint because so much time has passed that it rules out an infection now. It sucks in BC Canada, that every appointment needs a referral and I'm so worried I'm going to get the same answers I got from the previous specialist...no lump, means no cancer... pain, means no cancer, I don't have the peau d'orange so its not IBC. I was completely devastated she sent me away without a biopsy, and I'm so scared I'm going to go through it again.

    Anyways, here's to hoping for some answers this time.

    You women are all warriors for what you go through! Sending my prayers your way!

    Angel

  • moderators
    moderators Posts: 7,915
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    Dear angel1980,

    We are so sorry that you are still in pain and without answers to your symptoms. We are glad that you came back to update us all here. Keep us posted on what you learn. We are thinking of you.

    The MOds

  • angel980
    angel980 Member Posts: 11
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    Hello,

    So I had my appointment yesterday with specialist #2. It went much better than my first appointment and she is sending me for another ultrasound. I'm super relieved it wasn't another dead end. She gave me the same speech though, pain means no cancer, i dont have the peau d'orange so i dont have ibc, and she sloughed off my discoloration. My pain is constant now though. I used to go a couple of weeks without feeling pain but now i don't go a day without feeling it. She cant explain the pain and that is why she's sending me for another ultrasound. Im hoping after 4 months, if there's anything concerning, it would appear on an ultrasound now, would it not?

    Anyways I'm feeling hopeful for answers soon and happy to have a Doctor who is taking my concerns seriously. Thank you for letting me process my journey on here. It definitely has not been easy.


  • lw422
    lw422 Member Posts: 1,399
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    Angel--so sorry you have had such a struggle with trying to find out the problem with your breast, and I hope that they figure it out soon. IBC is rare so chances are good that you don't have it. I am bothered by your doctor saying that "pain means no cancer" because that is a lie. A lot of us had pain or other weirdness. When is your scan scheduled? My best to you for a good outcome.

  • angel980
    angel980 Member Posts: 11
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    hi, thank you for that! Reading These testimonies have been helpful navigating what the doctors tell you. I previously even got the line that my bra was probably too tight. I had to laugh about it later because so many woman tell of getting that line. My family doctor also told me I could be getting pain in my back shoulder blade because I walk around, clutching my breast with my arm, without knowing I'm doing it! What?!? Haha. Anyways I have to wait for the imaging to contact me and set up an appointment, so probably not for a few weeks.

    Thank you for your response.

  • angel980
    angel980 Member Posts: 11
    edited March 2023
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    well, I'm still here. After a year, I'm still having pain in my left breast, daily. In February I started getting pain in my right breast and about three weeks after the pain started I woke up and my right breast was red and swollen. The next day the redness and swelling faded but a couple of days after that I noticed a welt on my breast. It didn't itch or anything and also faded after a day. Then a couple days after that I woke up and the bottom of my Arreola was red and swollen. Also faded after a day. Last week i also noticed a disharge stain on the left side of my bra. I have never had that before and nothing since then. Now nothing just random pain in the right side and constant pain in the left.

    I went to my specialist again recently and she told I probably have mastalgia but she doesn't know what's causing the symptoms now in my right breast, but that I should take comfort in the fact my ultrasound was clear six months ago.

    I don't know what to think at this point. It's been a year and everything I read doesn't sound like I should be dealing with pain for this long. Maybe I should but then why do I get these random symptoms. I feel crazy at this point and when I visit my doctor I feel like she's psychologically evaluating me.

    I would like an MRI but in Canada everything has to be referred and it's hard getting a referral for anything.

    Just wondering if anyone else has experienced anything like this and if this is all just normal.

    Thank you

  • salamandra
    salamandra Member Posts: 736
    edited March 2023
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    I was having some issues with my legs and it felt like it took forever to figure out which doctor to go to.

    The doctors I saw were only concerned about ruling out blood clots once they'd done that, they were basically done with me. Finally a podiatrist told me to try a vascular doctor.

    All the other doctors were right that it was nothing life threatening or especially urgent. But I was right that there was something wrong medically that had a medical treatment, and now I'm almost done with the treatments for venous insufficiency and really looking forward to being more comfortable in my legs.

    Basically what I'm saying is that a lot of doctors have a narrow scope. The doctors you've seen are most likely correct that it's not breast cancer but that doesn't mean it's nothing. Can you keep bugging your doctors for referrals to different specialties until you find a doctor who happens to be looking for whatever it is that you have? In the mean time, keep a detailed diary in case some symptoms aren't present whenever you get appointments for.

  • angel980
    angel980 Member Posts: 11
    edited April 2023
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    Thank you for that. I am now keeping a diary of everything. I went for another mammogram and ultrasound a couple of weeks ago. I just got my results back. It says a nodule in my left breast has slightly increased in size to 1.4cm. It is a hypoechoic nodule demonstrating posterior acoustic enhancement. It says the differentials include a debris-filled cyst or fibroadenoma. They have recommended a follow-up ultrasound in six months and raised my birads from a 2 to a 3 that says probably benign.

    I'm relieved they now have their eyes on something and if it's a complex cyst, it explains the pain I've been in and perhaps the physical symptoms as well.

    Thank you for the comment!



  • angel980
    angel980 Member Posts: 11
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    Hello,

    I just wanted to give a last update just in case someone is reading this with similar symptoms wondering what the heck is happening to them.

    I went to my last six month follow up, ultrasound appointment in September and my lump hasn't grown or changed any so no follow ups are further recommended. They have classified it as fibroadenoma. They say my physical symptoms were mastitis infections coming and going and my breast and armpit pain, which is now in my whole upper back region is fibromyalgia, which has progressively been getting much worse.

    So lucky for me I had three different diagnosis all at once which made it all super confusing, and looking at all the symptoms altogether made me assume the worse.

    Thank you for all the information and support this past 18 months. It's been a rollercoaster of emotions. But thank you and God bless to all of you brave women going through all you're going through. I am sending prayers your way!

    Angie

  • anxious66
    anxious66 Member Posts: 22
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    I am glad I came across this thread as I’ve been having my own set of strange symptoms for the past 15 months - some similar to what you have described. It started with armpit pain and swelling, then progressed to breast pain and upper back pain. I also get pain in my ribs - all on the left side I’ve had a breast exam, mammogram, ultrasound, armpit exam, and blood work. Everything came back normal, except the blood work showed I have hypothyroidism so have been put on thyroid medication. Like you, I’m in a lot of pain but I don’t know why. For the past two years I’ve been caring for my mother who had lung cancer. Unfortunately she passed away mid September. I did have all the tests I mentioned while I was caring for her but I haven’t pursued things further, primarily out of fear. Watching my mom suffer through treatment to die anyway has traumatized me to the point that I’d never put myself through what she did. Anyway, I’m really suffering with this pain and having no answers. I was told I don’t have fibromyalgia. Im just at a loss as to what to do now. Were you given anything to help your pain?