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Please tell me what I can do :’(

6 Dec 2018 09:17

Hello, many of you may have read my previous posts and by this one see nothing is getting better only worse, I’ve seen between 7-8 doctors, had 3 ultrasounds on my breasts with clear tissue thickening all over the left side of my breast and swelling of my tissue that goes up my chest. I keep being told ‘’hormonal’’ and I’m sorry but I know what hormonal is, this is excruciating pain every day for the past 6 months, swollen nodes under my arm with a large mass, my armpit is constantly painful and aching, my breast is always painful, every type of pain from burning to shooting it’s happening, the skin on my breast looks different, it gets rather warm and it’s constantly itchy, I had a bright red rash which luckily went down. My shoulder feels broken and all round to my back, it’s in so much pain I can barely move. I’m getting constant headaches and lost my appetite completely. What else can I do :’( please tell me, my life has feel apart because of this, my doctors won’t take my fears seriously, I keep being told I’m to young for breast cancer i know it’s rare but not impossible. my body feels like it’s giving up and I can’t seem to be heard, I want a biopsy and a breast MRI really but all they’ll give is an ultrasound at a push, nothing is right about this. I feel so unwell Sad I need some help badly, I just want to be out of this pain. (I also have dry peeling nipples) 

Re: Please tell me what I can do :’(

6 Dec 2018 09:39 in response to Scaredbeyondwordsx

How old are you Scared?

Do you have a dedicated breast clinic in your area because you could give them a call. I am sure they would see you or you insist at the doctors that you should be referred. At the least it would set your mind at rest. 

My doctor missed the fact that my lump was cancer four years ago and again this summer but fortunately she did refer me on.

I understand you are scared but keep pushing.

Good luck xx

Re: Please tell me what I can do :’(

6 Dec 2018 11:38 in response to Dragonfly46

Hello, I’m 23 recently turned what a birthday that was sadly Sad my doctor recently referred me and I went back to have the same ultrasound and to be told it’s hormonal, I’m not sure where to find a breast clinic that I don’t need a referral for, I’m so lost with options. I’m so sorry your doctor missed your lump Sad I hope you’re doing okay. Thank you so much for your response x

Re: Please tell me what I can do :’(

6 Dec 2018 12:08 in response to Scaredbeyondwordsx

Maybe the doctor is right

You are very young to have breast cancer and the more you worry the worse the symptoms will get. Does it alter with the time of the month?

Try looking hormonal breasts up on google instead of breast cancer. My lump was outside my breast that is why it was missed. I am sure if the doctor was at all worried he would have referred you. There are so many other things it could be.

xx

Re: Please tell me what I can do :’(

6 Dec 2018 16:39 in response to Scaredbeyondwordsx

Hi there,

Sorry you're going through all this.

I just wanted to try and put your mind at rest as I agree with Dragonfly's last post.  I know it's really, really easy when anything happens with the breast to assume breast cancer, especially if there is a lump.  But you have now been seen by many doctors including a breast clinic.  They all take their job seriously, they have vast experience of lots of different breast conditions, and I don't mean this as an insult in any way, but I assume you, like most of us on here, are not medically qualified and don't know of all the many conditions that could be causing your symptoms.  If your condition isn't even causing all those doctors to think a biopsy is required then I would trust that it is unlikely to be cancer.  If there was the slightest thing to make them think it could be breast cancer then they would refer you for a biopsy.  If, however, their ONLY (and I do mean only) reason for not referring you is your age then I would query that of course.  So maybe ask what their non-age-related reasons are for not referring you and that might put your mind at rest.

Sadly there are many, many conditions of the breast that involve lumps, inflammation, redness, pain etc. Far too many to mention on here but the vast majority of them not life-threatening.

There may be people on here who have had similar experiences with their breasts to what you are going through, many symptoms cross lots of different conditions.  Still, I've known many women with breast cancer, I now have it too, and I haven't heard of anyone's breast cancer present in the way of the symptoms you are mentioning.  Not to say it's impossible of course, but I can see why your medical team are thinking it's something else.

Whatever the diagnosis is the condition itself is obviously causing you bother and it does need to be cleared up for your sake.  As such, have you pushed for a diagnosis?  There is a risk that your anxiety is causing you to try and push for a cancer diagnosis and that, because of this, your doctors aren't realising how problematic the current state of your breast is for you and how they need to be doing something to diagnose and treat it.  It would be worth going back to your GP without thinking about cancer and explain how the symptoms are affecting your quality of life and seeing what they can do to help.

Please do go see them again and try and get your breast problems cleared up so you can get on with things.

Best wishes,

LJxx

Re: Please tell me what I can do :’(

6 Dec 2018 16:55 in response to TwinTwo

Hello and thanks for your reply. I understand I’ve been seen by many doctors but I’ve also read the ibc that I’m fearing can be misdiagnosed, I read one woman was misdiagnosed by 9 different doctors, I don’t think they’re meaning to not pay much attention due to my age but most of them haven’t barely seen cases on imflammatory breast cancer, so that makes it even scarier. I think the worry for me ontop of how awful the symptoms are is that I keep being told it’s caused by different things, sometimes I get hormonal, breast tissue changes, musculoskeletal, sometimes I get told they aren’t even sure what’s causing it, nothing seems definitive enough for me to say okay I believe that. I’ve wrote down all my symptoms as suggest by another member on here I’ve taken pictures of red rashes I’ve had on my breasts and the last consultant I saw didn’t even let me show them, I just feel ignored as I’m dealing with such horrid symptoms and don’t know what it is for sure. I’ve tried going back several times but they can’t say what it seems to be causing it, I just want my mind put at ease Sad the lump underneath my arm is currently so painful and my breast won’t stop itching, I’ve tried calming myself by finding other causing that match with most of my symptoms but I just get ibc. I don’t know what else to do here even if it’s not what I fear I can’t go on like this Sad x

Re: Please tell me what I can do :’(

6 Dec 2018 17:33 in response to Scaredbeyondwordsx

Hi again,

I hope you didn't think I was being dismissive that certainly wasn't my intent.  But the breast clinic will be all too aware of inflammatory breast cancer, it's their job to know that stuff, even if the GPs haven't seen it.

It is hard not to worry when you hear about misdiagnoses of course, but then we could all be being misdiagnosed all the time and live a life of worry.  In reality misdiagnoses are very rare, they just stick in our brains because we naturally are fearful of life-threatening illnesses.

The fact that they are all saying different things as to what it could be is also not anything to worry about because there literally are lots of things it could be, and each doctor will have slightly different experiences pushing them towards one main idea.  Thing is diagnosing is often just about ruling other things out.  So they will make a first suggestion and give you either tablets or exercises to do, then if that doesn't work you need to go back so they can have ruled that out and have another think.

But of course all of this is incredibly hard when you are worrying about the chance of cancer.

In terms of advising you the only thing I could actually advise is that you take someone to a doctor's appointment with you.  Someone who will stay calm and collected, who can ask clear questions and explain how worried you are.  Someone who can also be a second set of ears because when we are worried about cancer we struggle to take in information properly.

If you look at the Inflammatory Breast Cancer pages on reputable sites (like this one) then that might help you as you'll see that you are having symptoms that aren't related at all to IBC, but which, added to your breast symtpoms, could be attributed to other conditions.

I realise you say that you know what hormonal is, but you have to remember that what hormonal is is also changing constantly because you are still very young.  So you do know what hormonal is for when you were 21 and younger, but you don't yet know what it is for you as a 23 year old.  Hormonal changes will gradually settle down through your 20s but of course should you go through pregnancy, and when you go through menopause, you'll have to completely readjust what you know to be hormonal yet again.

I don't know that there is anything any of us can say that will calm you.  I've had mastitis before depsite the fact the chances of someone in my situation having it are incredibly rare, and I had an unusual presentation of it which isn't disimilar to what you are experiencing.  I currently have redness of my breast but it's just simple fluid build-up due to lymph node removal.

What does strike me is that it's very possible your anxiety over your breast could have led to issues with your shoulder, headaches and lack of appetite.  Those last three can all be caused by stress and tension, so may be a result of your worry rather than symptoms related to the breast issues.

None of us are medically trained so you really do have to go back to see your GP and preferably take someone with you who will remain calm and be able to take in what the GP is saying.

If their answers aren't sufficient for you then I don't really know what you can do, they are the experts after all and while everyone can make a mistake the chance that 8 or 9 doctors, especially including a breast specialist, have misdiagnosed you really is so slim as to be pretty much impossible.

ITry and go back to them with a clear head and someone with you, calmly explain your symptoms (written down is good especially if it's in chronological order), and ask what it could be and what can be done about it.  Ensure you go back if the first diagnosis attempt isn't the right one.  Do give them a chance to get to the bottom of it, unfortunately any preoccupation you have with worry over it being cancer could get in the way of them doing their job and properly diagnosing you.  Your worry could ultimately make it harder for them to correctly diagnose you.

All the best.

LJx