Bilateral IBC

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  • blue22
    blue22 Member Posts: 280
    edited June 2020

    I don't remember if I had lidocaine... I had two puch biopsies total, and they were definitely on the easy end of the spectrum of everything else.

    Have you thought about looking into talking about your problems with lactation specialists? I feel like in our society boobs are so taboo to talk about, it might be that what you are experiencing is not super rare for someone who is breastfeeding. I honestly don't remember too much about breast changes when feeding my daughter, but I do remember there were issues... We forget those things, makes it easier to have more kids. But a specialist would remember what she has seen from her patients.

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  • Amanda2692
    Amanda2692 Member Posts: 29
    edited June 2020

    The doctor said I had to have the lidocaine. It was so quick though. Unfortunately my daughter wants to pull the stitches out while breastfeeding LoL. Also, they said they do not give results over the phone and it takes 7-10 days to get them. My appointment to remove the stitches is in 10 days so I have to wait until then to find out. I have been living with anxiety since January 11th when I first found a lump so what's another 10 days.

    The last few days I have somewhat calmed down (despite it being the anniversary of my grandmother's passing from breast cancer 2 years ago). If there is something going on I can't change it and I have just been *trying* to focus on eating well, getting out of the house for my mental health and enjoying my kids.

    Blue- That is a great suggestion. I should reach out to my midwife and ask if she can put me in touch with a lactation consultant that she works with. I wasn't so overly observant about my breasts the last 2 babies so maybe it is just what my boobs do and I never noticed.

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  • Amanda2692
    Amanda2692 Member Posts: 29
    edited June 2020

    Ugh. Well, I just walked out of the doctor's office after getting the stitches removed. Unfortunately, I still don't have any results. They actually sent it off to NYU for a second opinion. I don't know what to think. I just wish the worrying could stop. She said as of right now nothing was found according to the report. I thought today I could cross one thing off of my list but it seems I have more waiting.

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  • Amanda2692
    Amanda2692 Member Posts: 29
    edited June 2020

    I keep trying to calm myself that everything will be ok but it is nearly impossible. One moment I am totally fine and the next I'm in such a panic of what I am going to find out. I just wonder what made it be sent off for a 2nd opinion to NYU!? The doctor seemed very casual about it and just said maybe they just wanted to make sure they "weren't missing something." I have convinced myself that it is probably an unusual find or borderline diagnosis and will have the worst outcome. The punch site still feels so sore and I had a severe reaction to having a bandaid on for a few days (yes, I did change it daily).


    Like everyone has said, waiting is the absolute worst! This has now all been going on for nearly 6 months.

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  • blue22
    blue22 Member Posts: 280
    edited June 2020

    Hi Amanda

    I had problems with band aids too - although I never have had them before. You can ask them to use something else...

    I am sorry you are so worried, but it really doesn't help. I know that may sound insensitive, but I don't mean it that way.

    One alternative way to look at the second opinion is that if they were even remotely thinking you had IBC, they likely would be moving quicker. They seem to be taking their time.

    I hope you get an answer soon!

    Sending wishes for good news your way!

    blue

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  • Amanda2692
    Amanda2692 Member Posts: 29
    edited June 2020

    Blue,

    As usual, you make very good points. When I had the appointment on June 1st she said, "We can do a punch biopsy if you want to so you don't have to keep worrying and maybe figure out what it is." She really wasn't concerned. She even had to stand back to notice the rash because it is so light. It has been 2 weeks since the biospy. I am unsure what day it was sent to NYU but they said it could take another 7-10 days from that point. Of course, Dr. Google has me looking at IBC and rare lymphomas that mimic IBC. LoL I laugh because I tell everyone DON'T GOOGLE when that's all that I do.

    Maybe tomorrow will be the day I receive a call that nothing was found. Then I only have the breast lumps to worry about until my next follow up appointment with the breast surgeon in August.

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  • Amanda2692
    Amanda2692 Member Posts: 29
    edited July 2020

    Finally and update:

    It has been almost a month since my biospy. I still had not heard back from the doctor after my skin punch biopsy was sent to NYU by the pathologist for a second opinion. I finally called today and spoke with the doctor. She read the technical findings to me and then explained it in language I could understand LoL. I'm having some sort of reaction to a medication or supplement. I don't take any medication, however, I do take a decent amount of supplements and drink herbal teas. The pathologist at NYU also agreed but added it could be from an insect bite and its effects are lingering inside my body. The doctor said any sort of cancer, lupus, skin lymphoma, etc. was ruled out.

    I still have the original lump that was found in January and the solid breast tissue in the upper right quadrant of my left breast but I can finally feel more relaxed with the skin punch biopsy out of the way (I think they took 3 samples). I feel confident in their report because multiple pathologists reviewed the samples. I have my 3rd follow up with the breast surgeon in August. He actually is having me see his nurse practitioner. I think he was only scheduling the visit to keep me calm lol.

    Thank you all for your patience with me over the last few months. You are an incredible group.

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

    Amanda, thanks for the update. That's great news that cancer and those other serious conditions have been fully ruled out!

    Now you just need your breast to clear up and your symptoms to disappear!

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2020

    Just read this thread Amanda. Certainly another IBC Soapie with a happy ending. You are so fortunate to have Beesie and others to walk you through this trying time; Beesie is one of the rocks on which BCO is built.Best wishes for your eventual recovery.



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