Symptoms progressing worried

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Worriedasworriedcanbe
Worriedasworriedcanbe Member Posts: 79

Hello, again I wrote on here before about my concerns of IBC I’ve had most of the textbook symptoms and everything just points to that, I’ve heard the redness can come and go, by a lady who had this herself and it’s left me even more terrified because mine is mainly there but every now and then has gone but always comes back, the redness now is clear to see and strangely in patches over my breast. I wrote on my last post that this has been going on for 10 months - a year but recently looked back and realised it's been 7 months* at present I feel like I have sunburn on my breast the only way to describe it (I don't actually have sunburn) I mean pain wise it feels burning on the skin, my breast feels so heavy and swollen and hasn't gone down in these months, my underarm today is even more swollen I keep getting a burning/pulling and aching sensation and it won't go, there's lumps I'm unsure if lymph nodes but I'm positive that are huge and painful to touch, my other armpit feels smooth and nothing painful, I have never experienced so much pain in all my life and I've given birth so it's crazy if I'm honest, none of the symptoms have got better, I've had ultrasound which have shown thickened tissue, a tiny lipoma and prominent lymph nodes of which they couldn't explain said it was fine and sent me on my way.. it doesn't feel or look fine, I'm in unbearable pain practically bed ridden at this point it sounds silly but it's true, I'm having severe shoulder and spine pain in certain parts and I've had a constant headache for a week now, pain meds don't touch any of the pain, I can't seem to tie any of this to anything apart from IBC, I know there's many people that come here and post this and I feel for everyone on here it breaks my heart. I honestly can't cope, I know ultrasounds miss IBC. Most of my other symptoms are on my other post. I message my private derm who said he will do a skin punch biopsy on the 1st of may earliest I could get but I'm worried with the on and off redness he won't do it, I'm honestly praying he will.. my life has been ruined by this I had to give up my job, I don't have a life anymore, I'm crippled by whatever is going on and doctors just seem to look at me as if I'm crazy, I'm really not crazy, I'm sitting here crying as I'm writing this because I feel like I've been failed by doctors, my son may lose his mother because they failed me and I'm honestly so scared, so upset and have never been in such a horrible situation. I don't know where to turn, everywhere sends me back to my GP I've begged him for an MRI and he said no because my ultrasound wasn't concerning, I can't get anywhere and I'm at a loss. I've called so many places, my mum has to call an ambulance the other day as I was shaking on the floor in pain and even they couldn't help me, I'm sorry if anyone thinks I'm selfish by writing this but I really need help. My mum, other family members and friends can see the changes on my breast and see the pain I'm in everyday and they're at a loss now too. Please help :(

Comments

  • suzy2618
    suzy2618 Member Posts: 49
    edited April 2019

    I am so sorry for this. Can you try to see the dermatologist before the 1st?

  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited April 2019

    He has no sooner appointments :(

  • djmammo
    djmammo Member Posts: 2,939
    edited April 2019

    Worriedasworriedcanbe

    In the 7 months that you've had this, have the skin changes gotten progressively worse each month from then until today?

  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited April 2019

    Hello and thank you for replying I was hoping I could talk to you so I’m glad you responded thank you. The skin changes have changed drastically with the redness being on and off sometimes the redness is really bad, looks like sunburns, but it’s comes and goes. The pores have gotten noticeably larger, I’ve had on/off flaking and itching on my nipple and breast and at one point randomly my breast started peeling. but the most concerning is my breast seems to have completely darkened compared to the other. I’ve woke up today unable to put my arm down as it’s so swollen under there and painful, the lymph nodes in my neck are also up I’m in unbearable pain and my breast is more swollen. I’m so worried and can’t find anything other than IBC that could be causing this that concerns me more. Thankyou again for taking the time to respond to me.

  • djmammo
    djmammo Member Posts: 2,939
    edited April 2019

    Worriedasworriedcanbe

    IBC is rapidly progressive, becoming worse every day. It would be unusual to go on for 7 months and not have a clinical presentation that would clearly suggest IBC to your doctors. It is the least common of all breast cancer scenarios and nearly unheard of in your age group (23 correct?)

    Although BC can cause pain, the extreme debilitating pain you describe is not a cardinal feature of BC. Pain in the breast can be referred from elsewhere. Its origin can be neurologic, from irritation/inflammation of nerves outside the breast (https://www.ncbi.nlm.nih.gov/pubmed/454130) or vascular either related to inflammation of the vessels or obstruction of veins by clots.

    Have you seen a neurologist or other physician specializing in pain? It may be time to start looking outside the breast if a cause is not found on the inside.

  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited April 2019

    thank you so much for your reply, helped me feel a little calmer. I have read the symptoms should have progressed more but with what I’m seeing on my breast I’m so worried :( I’m just hoping it’s anything else but. And I know it’s rare so that helps too. Thanks so much for the helpful link. I have an appointment in July for pain management, will they be able to help me there on neurological in / the main cause of what’s happening. Thank you for the useful link too appreciate that! Can disorders like that affect lymph nodes? Thanks for giving me so many other causes helps me feel a little at ease.

  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited May 2019

    update - my dermatologist done a skin punch biopsy today. Results in 1-2 weeks

  • Salamandra
    Salamandra Member Posts: 1,444
    edited May 2019

    Hey Worried,

    So glad you were able to the test done. I hope the results come back fast and benign, and then you at least have peace of mind on the cancer front while you're investigating further.

  • Worriedasworriedcanbe
    Worriedasworriedcanbe Member Posts: 79
    edited May 2019

    hello love. Hope you’re doing well. Thank you so much for replying. I’m praying for good results. I’ll keep the post updated

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