What happens if IBC goes untreated

Hi all, 

I'm not here for myself, I'm here because my mother has some worrying symptoms which i think may be inflamatory breast cancer. her right breast is red and swollen like a watermelon, the nipple is inverted. It's very heavy and painful. He right arm is also very swollen right down to her hand. She is 62, overweight, and recently hurt her arm whilst helping me move house, so that may have muddied the waters in assuming the swelling is to do with a pulled muscle, when it may be related to the inflamed breast. 

She hates hospitals, hasnt been to a GP in years. Its practically a phobia. So this is major issue for her. She isnt in denial as such, she is aware that this is not right - i mean it's very obvious when you compare to her left breast that something major is wrong with the other on. its higher on her chest too, she says lits like some went through her back to her chest, got pliers and dragger her nipple backwards and upwards. Said the pain is like that too. I hate seeing her in pain. 

She has not been to a dr so we dont have a formal diagnosis of this. She wont go. I dont feel i can drag her there as she is very strong willed and after all, its her body and her decision. However, I am very worried. This isnt just going to go away. She is talking about it being the end of her, she cries and is obviously in agony. 

I know people on here will probably tell me i need to get her to go, and even be angry that im not pushing her. i literally found out this weekend - shes been hiding it from me. She had some weird symptoms, itchiness, swelling etc which came and went, but about 2 weeks ago her breast suddenly swelled up and it is not going away. I dont know what to do. I know my mother. She doesnt want to be "mutilated" and says she would never survive chemo and its barbaric and she doesnt want to go out like that. Doesnt want to die in a hospital. Wouldnt survive any kind of surgery anyway. All these things, and the fact she doesnt get exposed to much illness as she doesnt go out that much, probably means her immune system is weakened anyway. 

Sorry lost my thread a bit there, but i hope im putting over the picture. Shes a strong woman, but currently paralysed by fear. She has said she will go to the drs in the new year if its no better. Bt if it is IBC its agressive and that may be too late. Most people would have gone 2+ weeks ago, but she wont. 

I'm a very matter of fact person, so i'm trying to look at this objectively despite the fact that its killing me inside seeing her like this, and i want to help, but i dont know how.

I guess i have many questions hence me being here. I know we dont have a formal diagnosis, but I'm trying to get my head around the "what if it is" so please if there is anyone with answers please could we come from the point of view that is IBC.  

1) if she doesnt go to the dr, what will happen? Yes i understand this wont get better - i'm meaning like stages-wise, what will develop, will pain get worse, physically what will happen as this progresses?
2) If she does go, is she able to refuse treatment? I know she would not want a mastectomy, and i know that is the main treatment along with Chemo then radiotherapy.
3) if she refuses treatment, will they give her something to help manage the pain?
4) I worry about my dad who is looking after her - if she doesnt go to a dr and something happens, will he face any consequences of not making her go to a dr. i would hate for her decision on this to mean he faces some kind of charges for negligence or something. 
5) Timeline - whats the prognosis if left untreated?

I want to help her. But i also know her and understand her, and her fears. I know she would rather not opt for treatment. So need to know what to expect and how to help her... and what kind of timeline i might be looking at. 

  • I'll keep everything crossed for you both.  She can't continue like that in that pain.  Keep me updated won't you. 

  • Can't believe what I'm about to write... yesterday she got to the point that she simply couldn't get to her feet anymore. Weak and confused she just sat on a chair, unable to move. So we called an ambulance. Less than 24 hours later I'm sat in the Acute Assessment Unit having spent a hell of a night here with different levels of her delirium and pain. She's on loads of painkillers, antibiotics, fluids. Her kidneys are barely passing fluid so they are in failure, she's going a little yellow as her liver function tests came back very high. They haven't even been able to get her in for a CT scan as they can't do the contrast dye as that would basically kill off any remaining kidney function. 
    Some Drs came and did a bed diagnosis saying it most likely is breast cancer and probably a blood clot in her shoulder or blocked lymph nodes stopping fluid moving. That there's a high possibility the cancer has spread. She is septic. That's probably what's causing the confusion. They did a head CT to rule out stroke or tumors- all clear there. 
    Her legs are swollen up a little too from having been sat so long. She hasn't been to bed for a couple of weeks now. 

    So now I'm sat beside her just waiting. Apparently it could go either way. They say there's a slim chance the kidney function could kick back in... but they've said to prepare for the worst... with that knowing nod that says what they can't. 
    im devestated. Idk what to do with myself so that's why I'm writing this i guess. 
     

  • So sorry Starrgayza - what an awful situation. I hope she comes through it x

  • Sadly she's not going to come through it. They have managed to take a CT scan without contrast which is limited but definitely shows a mass on the breast and up into the shoulder. 
    they are now ceasing any form of treatment and are moving to palative care. They say a matter of hours to a couple of days. Impossible to tell at this point. They will just make her comfortable until she passes. 
    I honestly can't believe how fast this went downhill. 
    thankfully my family are here to see her off and support each other. i can be grateful for that. 

  • At 5.15am today she passed. 
    I'd mentally prepared myself for all eventualities... but never thought I'd be sat in this version of reality so quickly. 
     

    thanks for giving me a place to share my journey.

  • I'm so sorry to read this starrgayza.

    My condolences and thoughts are with you and your family at this time.

    Kind regards,

    Steph, Cancer Chat Moderator

  • My heart goes to you, you did everything you possibly could and obeyed her wishes. I'm so sorry for your loss.....xxx

  • Oh my gosh. Sorry have just seen this. I'm so sorry it has come to this.  The speed of it is shocking and very much like my mum.  In hindsight it is kinder that way. That they did not suffer too long.  It's a gruelling situation. And it will be a tough road ahead.  As long as you have family and friends to suppprt you.  I do know exactly what you are going through. It's absolute hideous and the shock will help you through for a while.  You will probably feel a bit numb sometimes too but that's normal given how quick it all happened. Be kind to yourself.