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What happens if IBC goes untreated

16 Dec 2019 10:31

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. 

What happens if IBC goes untreated

16 Dec 2019 11:15 in response to starrgayza

She must go to the doctor. Assuming it is cancer, it will get worse, not better, by itself. And it it isn't cancer, the doctor will treat it and she will feel very relieved.

Maybe reassure her that she will always be in control throughout? She will decide what treatment, if any, she undergoes. Doctors only make recommendations. Recommendations that should normally be followed, sure, but that is a discussion for another day, assuming the news is bad, which it may not be. But getting her to the doctor is vital.

If she doesn't listen to you, maybe enlist the help of a family friend who you think may be more persuasive?

What happens if IBC goes untreated

16 Dec 2019 14:27 in response to starrgayza


Your mum reminds me of my mum and sister - both stay clear of the doctors. With regards to my sister I just kee[ nagging until she goes just to shut me up nut with my elderely mother I go and speak to the GP and ask him to write to her to ask her to come in for a health check. She will go if the doctor has told her to come in but not when I ask her.

IF your mum has IBC it can spread very quickly and at 62 she is far too young to merely accept it as fate. If it were my mum I would be calling the GP and explaining the symptoms and my mother's refusal and take it from there. 

What happens if IBC goes untreated

17 Dec 2019 13:56 in response to Magpiemaggie

For now it seems shes looking for other things it could be, like mastitis. I guess it could be that, i dont know. She says she will go in the new year. I dont really know what else to do. 

I mean my reason for posting here was to find out what to expect if the worst happens. Im a realist so i like to do the prepare for the worst, hope for the best thing. 

I do know her though. Even if she went to the dr and they told her about chemo and mestectomy and stuff, i know she would opt not to do it, but then shes scared that if she doesnt accept treatment, that they will write her off and not help her if she needs other support and care.  I dont have answers for that as i have no experience with this. 

What happens if IBC goes untreated

17 Dec 2019 16:13 in response to starrgayza

Maybe I can offer some insight to worse case scenario. I think my mum had breast cancer. But like your mum had a terrible phobia of drs hospitals etc. She never had mammograms, smears etc.  Anyway February this year she complained of back ache and fluey. By April she had severe pain in her back.  She refused xrays at this stage. By August 1st she had an awful chest infection and the pain in back was fairly persistent and severe.  She finally agreed to an X-ray which showed all clear just a chest infection brewing.  On August 19th she collapsed with a plural effusion (fluid in lungs). At this point they were treating her in the high dependant unit for pneumonia she was very very weak and ill and on oxygen.  On 23rd August. They said the fluid had come back after the took a biopsy. And showed it was filled with metastasised cancer cells and they could now see a shadow on the lung.  They tested the cells to see if the primary came from the lung but it hadn't. She was now much too ill and weak for further testing and she died on the 26th August. We are not sure where her primary was.  But from what I have read when breast cancer metastasises, it starts with back pain, then goes to the lung, and you then get a plural effusion. So given this path. I think mums might have started in her breast. Now wether she found a lump anc kept it to herself no one will ever know now. I know this is all guesswork. But I do think it was either in her breast or ovary.  Plural effusions normally happen only when the cancer is in several places. 

I hope this gives you some insight. I don't know what to suggest apart from dragging your mum kicking screaming. I have been there and worn the t shirt.  Mine is not a happy ending and we are all heart broken. Wether mum preferred it this way. Not k owing and dying quickly. I'll never know. Or wether she truly did not know she had a lump. Well it's all what ifs for us now. And breast cancer is so easily treatable. 

letvus know how you get on 

What happens if IBC goes untreated

17 Dec 2019 18:03 in response to Beach45

Thank you for your reply and I'm so sorry that's what happened to your mother. Sounds like she was very similar to the way my mum is. 

Im trying to stay hopeful that it's something else, but I know I have to be prepared for something like you describe happening. 
I appreciate how honest you've been with this reply and my sympathies go out to you. It must be very difficult for you and your family to process. 
I will post any progress. Thank you x

What happens if IBC goes untreated

17 Dec 2019 20:11 in response to starrgayza

Thank you. I'm sorry my post wasn't meant to frighten you it's just the stark reality of persistent severe symptoms being left.  I always knew one day her fear of hospitals would catch mum out.  She sat in a chair for a week once telling us the pain in her leg was just a pulled muscle. Eventually her next door neighbors who are both nurses carried her out from her chair and took her to the hospital. She had broken her femur. 

I really hope your mums isn't serious. Let us know how you get on. 

I half wish I had frog marched her to the hospital. But I just think she didn't want to know and possibly would have really resented us for putting her in that position.  I think she wanted to go this way if she was ever going to get cancer then this was how it was to be 

What happens if IBC goes untreated

17 Dec 2019 20:35 in response to Beach45

To be honest it's almost nice to have someone saying what I'm thinking because I know no matter what she's told she will absolutely not want treatment. So it's almost like it wouldn't make any difference to her. She also wouldn't see it as giving up. It would not be her choice to have any kind of surgery etc. She had a mother and grandmother who had breast cancer and ended up having a mastectomy and they both regretted it. Of course that opinion is tied to emotions and experience from people she valued, so it carries weight with her, despite the fact that it was decades ago and things have come a long way since then. 
What I don't think she realises is that it's unlikely, if it were to turn out to be cancer, that she will just pass soundly in her sleep or something. She's already in pain and if it were to go the way yours did, she would end up in pain in a hospital where she doesn't want to be. I'm not saying there's a better option here but if it's a case of ending up in a hospital with pneumonia or something then why not look at going to a dr now. Maybe I'll use that argument at some point. I know she's not ready to hear that kind of thing yet though. I just don't want to waste time either though. I'm torn with it. As you say I wish I could just make her go, but if it all goes sideways then I feel she would be angry and would almost rather not know. 
I very much appreciate your perspective. It's so easy for people to say "you must make her go" but I know how stubborn my mum can be and also I know how she feels, things she's always said, and I know that wouldn't be what she wants. If she goes it has to be because she decided to. Also if she decides it it's because she wants to fight. I can't make her. I don't think anyone could. 

again thank you. I'm so sorry that it happened to you that way, and I do hope I'm not looking at that future for my mum, but if I do, I'm glad I talked to you here. I needed to know the truth or at least truthful possibilities. 


What happens if IBC goes untreated

17 Dec 2019 20:55 in response to starrgayza

Please don't hesitate to privately message me. I honestly do know how you feel. They are adults with human rights.  You cannot force them. They and only they can decide on how they want to live and ultimately die.  My mum was terrified of getting cancer.  She I think also thought "I'll just would rather quietly die of it and not know about it". And I think if she hadn't of had that plural effusion she would have probably died in her sleep. Saying that she was getting very poorly so dad probably would have called an ambulance at some point.  But dad found her collapsed on the floor struggling to breath and called an ambulance. Where she then spent a week in hospital. Her worse nightmare. But it's where she ended up.  I asked the drs not to tell her she had cancer but they said she had a right to know and dad agreed with them they said she had a few weeks left and would need Macmillan nurses going home with her. But actually . She died two days after they told her. I firmly believe she gave up there and then. She wanted to go quick. 

i think if mum had gone to the drs with her back pain in April. It had already probably metastasised to her bones.  So this way she only knew for two days she had cancer rather than 4 months.  But then could they have saved her?  And she could still be here today. But. I'm not sure she would have had accepted chemo or survived it. She was already weakening. 

it's a bloody hard decision. But your mum needs to I think make the ultimate decision.  If you force her she could resent you.  I think you need to sit down with her and have a very long honest no holding back chat. Outline to her. What could happen and what does she want. And be brutally honest with her. And then there is no more you can do once she makes her decision. But at least you know you tried 

What happens if IBC goes untreated

17 Dec 2019 21:26 in response to Beach45

Omg it's like you could be talking about my mum. You know exactly what I mean and it's so good to have someone understand. Thank you so much. I will probably message you as things go on. Thank you, it feels good to know I'm not the only one with a situation and people involved like this. You've made me feel understood. 

What happens if IBC goes untreated

31 Dec 2019 19:15 in response to starrgayza

She finally went to the dr today. He arm is so swollen and giving her so much pain. He is referring her to a specialist and given her antibiotics and pain meds for her arm. Fingers crossed it will give her some relief for now. Just wanted to update you Beach45. Thanks for your support before. Happy 

What happens if IBC goes untreated

1 Jan 2020 16:45 in response to starrgayza

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

What happens if IBC goes untreated

14 Jan 2020 16:38 in response to Beach45

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. 

What happens if IBC goes untreated

15 Jan 2020 00:08 in response to starrgayza

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

What happens if IBC goes untreated

15 Jan 2020 03:09 in response to Magpiemaggie

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.