What can I do :(

Worriedasworriedcanbe
Worriedasworriedcanbe Member Posts: 79
edited March 2019 in Not Diagnosed But Worried

hello everyone, I'm new on the site and hope I'm writing in the correct place. I need some advice of what I can do next, I feel neglected, ignored and at such a loss it's breaking me down. For around 10 months now I've been having pain, itchiness, sore spots, redness, dry nipple, what looks like dimpling, prominent sticking out veins through breast and nipple cuts, swelling, heat and more symptoms on my left breast. The pain has been constant same with most of the other symptoms and nothing I've tried (every pain med possible & creams) ease it at all. I've been to the breast clinic and doctors many times and they've found thickened tissue, prominent lymph nodes and a lipoma that's tiny and wouldn't be causing this, they agreed with that. I've never been offered any other tests, I have a big lump in my armpit that feels swollen and I can barely move my arm, I feel inflammation around my breast, armpit, arm and shoulder daily the pain is horrendous. I'm so concerned about ibc and my gut continues to tell me something seriously wrong, I just don't feel well at all, aside from the breast area I've been tired often, constant headaches and bone pain.. I just really don't feel okay. They won't do any further tests and keep telling me it's normal, but burning breast pain for 10 months along with the other symptoms isn't normal. I don't know what else to do or where to go , I'm scared for my son being without his mum if they don't find this I'm so heartbroken, I'm sorry if I come across rude as you guys are really facing this, I respect each of you you're strong powerful people, I just have no where else to turn. I'm so worried, I'm upset and I'm in so much pain. They won't do further tests is there anything else I can do? Tonight I've come up with a small blister like rash which is red with loads of spots on it and itches like crazy and my minds going overboard, I just want answers :(

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Comments

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2019

    I’d go to a dermatologist

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  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited March 2019

    I did go private to a derm who I showed pictures too, he couldn’t do anything himself and I’m not sure why so sent me to a private breast clinic of which did an ultrasound that I paid so much for to get no results or answers, they didn’t even find the lipoma and it had been there from a precious scan :(

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  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited March 2019

    but thank you so much for replying

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    Try planned parenthood if you are in the US.

    Or switch primary docs?

    It seems nuts they won't at lest biopsy the lump under your arm. Have you had an ultrasound or a mammogram?

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  • FrenchPorsche
    FrenchPorsche Member Posts: 75
    edited March 2019

    Welcome to this site. I am also new.

    I’m not an expert at all, but it does sound to me like you need some more tests as you haven’t had any relief from your symptoms over this period. I can’t imagine why they would say it’s normal, particularly as it’s only on one side. Are you able to go to a different doctor or clinic for another opinion? I would feel the same as you about it and wouldn’t give up after being fobbed off. Please don’t give up.

    Hopefully it isn’t anything serious and your fears won’t be realised.

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  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited March 2019

    thank you so much for your response, I hope you’re well. I’ve been to a few different breast clinic but I know IBC isn’t something very known to all doctors I just feel dismissed without any answers or relief and they literally have no clue, so im not sure why they didn’t do more tests. My gut keeps pushing me so I’ll continue to push I just don’t know where go and my doctors won’t tell refer elsewhere

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  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited March 2019

    Unfortunately I’m not I’m in the UK I changed doctors already to see if it would make a difference but if anything it’s worse :( all I want in honesty is a biopsy because it can detect so much and I may finally get answers. They done an ultrasound as I’m 23, to young for mammo. Thank you for replying it means al

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited March 2019

    Have you been to a dermatologist? They can do a punch biopsy, and also be the best at treating any skin issues that are not cancer. And from what I've read on these boards, IBC would not be this slow, but others who know much more will chime in.

    Sorry, the other answers showed up while I was typing. I've never heard of a dermatologist who wouldn't do a biopsy, that's just nuts. Can you go to a different one?


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  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited March 2019

    symptoms have progressed over the 10 months that’s whats worrying more, I just feel so unwell and in pain constantly to think it’s normal :( yes I’ve been to a derm who referred me to a breast clinic of which I didn’t get answers from sadly. Thanks for your response I appreciate it so much. I really want the biopsy but can’t seem to get one even with all these symptoms :(

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    Go to this thread....

    https://community.breastcancer.org/forum/72/topics...

    This is specific to TNBC but these are patients in the UK. Hopefully someone will have an idea specific to your region, to the NHS, etc. You may get good info from them.


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  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited March 2019

    thank you x

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2019

    Worriedasworriedcanbe, we so hope you're able to get some answers soon! There are some great resources shared above, please keep us posted on what you learn.

    The Mods

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  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited March 2019

    I’m not sure if I can, I’ve run out of money now due to paying private for a derm and the breast clinic, I had seen another derm that I was sent to for a mole she said to try some cream of which I did and Male no improvement. I feel so scared, my doctors won’t do anything so I’m hesitant to go back there and I’m not sure what I can do next :(

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  • Anton0277
    Anton0277 Member Posts: 10
    edited March 2019

    To my knowledge—I am not a doctor but Ithink I’m right—the most reliable—and only—test for ibc is a punch biopsy, done not by an obgyn but by a dermatologist. This is because, to my understanding, ibc does not present as a lump. I’m surprised you haven’t been referred to one by the doctors and breast clinic you’ve visited with.

    Hopefully you’ll get some much needed answers and anxiety relief soon!


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  • Anton0277
    Anton0277 Member Posts: 10
    edited March 2019

    @Worriedasworriedcanbe just read your followup posts. Go to a different dermatologist and request a punch biopsy. I think is a fairly simple procedure.

    Recently I saw a dermatologist for red pimples on my right breast that had me scared and they said folliculitis. Good derms are aware of breast issues and know what to look for. I was prescribed a cream and an acne wash and the pimples are clearly resolving, albeit slowly. My skin is just that way.

    I am soon due for a mammogram and ultrasound six months follow-up for an intramammary lymph node in my left breast that was observed on my last mammogram. It was seen on mammogram but not on ultrasound, perhaps due to the fact that I have a lot of breast tissue. I mention this because my left breast also acts up: itching, nipple itching, pain, dryness, an electric sizzle that surges through the breast. The right one does too but less often. I have fibrocystic breasts and cysts inboth breasts. This may be the reason. Also, hormonal changes may present with symptoms. I think I've been experiencing those changes since turning 40. According to Dr Google no one really knows what causes intermittent breast pain and this sounds right. Nevertheless, I will discuss these issues with my obgyn when I have my yearly checkup.

    I hope you get answers soon!

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    worrried, you have replies on the UK TNBC thread.

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  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited March 2019

    thank you! I’ve now seen them and responded :) x

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  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited March 2019

    thank you for your response I appreciate it, I've seen 2 derms one sent me elsewhere to a breast clinic and the other said to try a cream which I've been trying. I can ask to go again but unsure on what my doctor will say probably a no. I've heard of folliculitis before so I'm familiar with it I hope your symptoms have calmed down and I'm sure you're so glad it wasn't something serious, I keep hoping for the same but my gut thinks different :( I hope I get answers soon, but thank you for telling me that it's helped calm me that it could still be something that isn't serious x

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  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited March 2019

    Hi. I hate to hear that you have suffered for so long. Sometimes you have to say the right words to doctors, such as ' this pain is making it hard for me to complete activities of daily living.' Can they do blood tests? I am worried about your lymphatic system. Also, are you on any birth control? Hormones and breasts are not always friends. Hang in there.

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  • LoriCA
    LoriCA Member Posts: 923
    edited March 2019

    Worried based on the timeline you've given it is highly unlikely to be IBC. IBC can spread so fast it will make your head spin. Ten months after the first sign of symptoms and left untreated it would likely be ulcerated and oozing, spread across a large portion of your torso and metastasized to other parts of your body, if you weren't already dead (not saying that lightly, my oncologist said he didn't think I would last 60 days if it didn't respond to the first chemo we tried because it was spreading so fast). But to be on the safe side since they did find skin thickening, you can get a punch biopsy which is the only way to confirm IBC. It can usually be done by a breast clinic that does biopsies or by a dermatologist.

    Swollen lymph nodes can be caused by many things, including an infection. And sometimes a non-IBC breast cancer can cause inflammatory symptoms without being true IBC, but it sounds like your ultrasound was clear. Others here have some good suggestions and advice, and I think you can safely put IBC out of your head. I wish you much luck in getting a proper diagnosis and getting relief from your symptoms.

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  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited March 2019

    thank you so much for your response I’m so sorry you’re going through this it breaks my heart, I hope you’re as well as can be. That does make me feel a little better, I think it’s because I’ve heard about people being misdiagnosed for a year that I still worry after all this time. I always wondered are skin thickening and tissue thickening the same thing? I’m in so much pain and just want answers and the fear to be gone out my head. I keep pushing for a biopsy but seem to get no where. Again thank you for responding x

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  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited March 2019

    thank you ever so much for your reply, I’ve said that to them and that it’s ruined my life, doesn’t seem to have any effect :( I’ve had loads of blood work done all comes back fine. I’m not on any birth control no and thank you I’m trying my best x

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  • LoriCA
    LoriCA Member Posts: 923
    edited March 2019

    Skin thickening and tissue thickening are two different things. IBC skin thickening can be felt on the surface of the skin, it can almost feel like leather. Tissue thickening refers to the breast tissue beneath the skin. Although it can be an early sign of cancer, it could more likely mean the fibrocystic breasts that Anton0277 mentioned, which often react strongly to hormone levels (is your pain worse right before/during your period?). It can include symptoms of swelling and pain (including under your arms), and can happen to women in theirs 20s. It's not dangerous, just painful, and it can make it harder to detect cancer in the future. Do you have a copy of your ultrasound report, and does it mention the word fibrocystic?

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  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited March 2019

    oh okay, they said I had thickened tissue, not skin so that’s a bit more relieving but worrying that it could cause cancer in the future or be cancer. I asked about fibrocystic breasts and asked if it could be that and they said no. The pain worsens yes but is still awful when my periods go it’s like burning but sore to touch too.

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