I’m sorry to keep posting but the fear is to much

Worriedasworriedcanbe

Hello again, I feel so bad to keep posting here but I feel so lost and like I have no where to go anymore. I still don't have answers 9 months later and everything is getting worse, I feel so run down, I've never gotten to a point in my life where I feel I can't keep going, I'm sorry to sound so bad but it's made me beyond miserable. If anyone has seen my previous posts they'll know what's been happening for anyone knew please feel free to read and if possible feedback would be great it means a lot. I'm in a huge amount of pain at the moment, my breast is stil huge and is completely orange in colour doesn't look anything like my other breast anymore and I just keep being told ''it's normal, nothings wrong'' but not being given an answer to what's going on, I've been to the breast clinic many times, private, my doctor I've been everywhere possible and I feel stuck now, I know somethings wrong, my breast is dimpled and heavy, painful and honestly looks a mess (best way to put it) has anyone gone through this? And been left stuck with no answers or found anywhere else to go, I'm based in the UK. I just want help I want to know what's wrong but whenever my doctor refers me even though something new is found they say it's fine.. I'm a wreck and I'm starting to wonder how much more of this I can take. Thank you

wintersocks

Uk here too. Have you spoken to Breast Cancer Care? https://www.breastcancercare.org.uk/?. They have a nurse led helpline for breast matters they can help either by phone or email.

marijen

Worried, this is a pic of mastitis from the Mayo Clinic. Does it look like this? Please click the link

https://www.mayoclinic.org/diseases-conditions/mas...

Worriedasworriedcanbe

hello and thank you for your reply, ive seen this before but no it doesn’t look like that, sometimes it goes red but it’s mainly an orange/bruising type discolouration and it’s the whole of my breast I’m so worried it’s been like it for 9 months now and just gets worse.

Worriedasworriedcanbe

I haven’t yet, most websites and nurses as of course I understand tell me to go back to my GP I’ve done that over 6 times now and it’s the same cycle and I never get answers I’ve joined their website now though will make a post thank you so much x

marijen

After six trips to the GP, I’d get a new one. 9 months is too long to go without some explanation. Please let us know what you find out.

edwards750

OMG 9 months! That’s outrageous. You know something is wrong and I cannot comprehend a doctor telling you there isn’t. Time for a drastic change in doctors. I’m in the US so I don’t know how things work there as far as finding and/or changing doctors but it’s past time to get some answers and treatment.

I had redness in one of my breasts but it turned out to be bruising. I was a basket case worrying about it so I can only imagine how scared and frustrated you are. Mine only lasted a few days.

If I had your situation I would run not walk to a breast specialist not a GP. They are not skilled enough in diagnosing breast issues.

Don’t take NO for an answer. Be persistent - be a pest but get an appointment with a different doctor. I have a friend who got an all clear on a mammogram but another doctor was not convinced so she ordered more tests. Thank God she did. It turned out to be BC. Friend is fine now

We have to be our own advocates. After all it’s our bodies and our lives.

Please keep us posted.

Diane

djmammo

Worriedasworriedcanbe

If I am not mistaken the UK has separate breast centers with radiologists that do nothing but mammograms. I am told they are also read by 2 different radiologists before a report is issued and if they disagree it goes to a 3rd radiologist. Is that still the case, or am I confusing this with somewhere else?

Worriedasworriedcanbe

I’m not sure honestly, I have ultrasounds never had a mammogram, i only get told it gets sent to my GP

Worriedasworriedcanbe

Hello and thanks for your response, it means so much. I’ve been to several breast clinics now mainly the same one apart from one I went private. But I get told something knew each time and it never gets looked at as anything worrying, the last time I went I had thickened tissue, lipoma and prominent nodes, now the thickened tissue has extended to the top also, was never there before and I keep being told it’s normal. I’ve tried to be referred too other breast clinics to see someone different and seek answers, as I never leave with a definitive one.. but I've been told I can only go to that one and they won't run further tests, my breast is screaming (that's how I explain it often) it's so huge and angry, with what looks like bruising over the top and an orange shade tint all over, it's so sore, unbearably sore and my armpit too. I've been through childbirth, pneumonia 3 times and other health complications so I've been through pain haha but nothing has ever been this painful, I've lost my life, I've lost myself and i can't keep doing it, I've lost all fight and I'm broken. I've tried every avenue and I just get no where, I already changed my doctors to this one and I just get sent to the same breast clinic. I just want to know how are you doing now? Hope all is well. What other symptoms was you having if you don't mind me asking. Yeah I keep hearing that and I say it myself be your own advocate but what if you're trying and getting no where, it breaks my heart. xxx

marijen

Worried, did you call the Helpline at BCO.UK?

Worriedasworriedcanbe

I tried and it says closed until the 18th and to leave my name and number so I did that x

wintersocks

Worried

Try this organisation. They have a helpline. I have used them both for myself and in my work and found them very good.

The Patient's Association : https://www.patients-association.org.uk/

Worriedasworriedcanbe

thank you, I will try them. Today has been so emotional I’m pushing everyone away because of the fear, because I’m scared it’ll be too late and they’ll finally find something, I’m sorry for how bad I sound right now but this has completely shattered me. The pain, swelling and discolouration scares me the most, with pictures being taken by myself I can see the bad one is yellow all over yet my other is my normal skin tone, I just dont understand I feel so stuck x

djmammo

Worriedasworriedcanbe

Why only ultrasounds, why no mammogram?

Worriedasworriedcanbe

as I’m only 23 they won’t allow it, I’ve begged for an MRI and my GP keeps saying only the breast clinic can sort that yet when I’ve been there and cried begging them for once so more tests can maybe find what’s going on they say I don’t need it or can’t have it. Im honestly a mess over it and I can figure out where else i can go. Sadly I can’t Pay private for a breast MRI without a referral and I would be very willing to pay I just want answers, there can't be this many changes and so much pain in my breast and armpit and it be nothing, I feel so let down.. they say to be your own advocate but what if you're trying and feel your concerns aren't being listened to or looked into further. My life is falling apart and I can't fix it, I'm utterly heartbroken

Aussie-Cat

Worried, I'm really sorry you're going through this and I pray you get answers soon.

MelissaDallas

What did the dermatologist who did the skin biopsy and diagnosed your lentigo say about the appearance of your breast? What did the providers who did the ultrasounds say about the appearance of your breast?

Worriedasworriedcanbe

My dermatologist didn't say much after I asked about it, he said the small patches just out from my nipple is the lentigo and I can vouch for that but the discolouration I'm referring to is over the entire breast and when I then asked further questions I didn't get no response. (Email and text) The breast clinic brushed over the fact I continued to point out the discolouration, I keep being told they can't figure out what's causing it and pain is sometimes normal but with this amount of pain and the many changes it's really not normal, I know I sound silly because they're the professionals but I know deep down and my gut is telling me there's something wrong. The breast clinic also wanted to check recently when I went again for a milk duct infection, had the ultrasound again and nothing wrong with my ducts, so that was ruled out too then they found even more thickened tissue at the top of my breast (originally had it at the bottom so it's gone out further) and had no answers for this or what I can do next

Worriedasworriedcanbe

thank you so much hun. Hope you’re well xx

marijen

I really don't understand what thickened tissue means. Is it pitted like an orange?

Does anything in this link look like it or describes it?

http://cancerworld.info/inflammatory-breastscancer...

Worriedasworriedcanbe

thickened skin is usually what causes the orange peel look I was told mine wasn’t thickened tissue so I think the tissue inside the breast gets thicker and more rope like texture just feels like lumpier thicker tissue when feeling. I have many symptoms of ibc that’s why I'm so concerned and I've developed a bug bite like mark today, it's so red and sore and the pores are more noticeable. On one of those pictures the yellowness around the bruise is the type of discolouration I have but a little lighter I don't know where to go. I spoke to the breast cancer care nurse today she suggested something I was thinking earlier to speak to my GP practice manager and question why I can't have a private MRI if I'm paying myself and why the drs there turned me away when I asked, so I contacted and waiting for her to call me back. I'm in such bad pain right now my veins screaming out of my breast and the hospital by me can't do anything if I go up there I feel so stuck

marijen

I’m sorry for you. That sounds terrible - all the pain, plus the fear. I hope the nurse calls back soon and gets you help.

Aussie-Cat

Worried, you are doing really well at advocating for yourself and I hope they listen to you and you get the tests you need. It's bizarre that all the doctors are ignoring your symptoms and terrible pain. I so feel for you.

Worriedasworriedcanbe

thank you so much x

Aussie-Cat

You're welcome. How are you doing now? Sending you hugs.

AliceBastable

If this has been going on for over nine months, wouldn't that automatically rule out inflammatory breast cancer, which advances extremely fast?

Racy

Worried, I understand your anguish and frustration. When you had the ultrasounds or other tests, you should have received a written report detailing the findings. Do you have this? It should give some information about the diagnosis.

In any case, you need a resolution as what you are describing is not normal. Do you have anyone who can advovate for you that may be able to get the message through to the health professionals better than you possibly can?

Keep us posted.

Alicethecat2

Dear Worried

I am sorry you are going through this. It is fair to say that we ladies get painful breasts, especially before a period - and many of us have patches of discoloured skin, perfect that we are in every way, of course

However, I do not think it is fair that someone is living their life in fear so...this is what I would do as someone twice your age and a little bit more:

Step One - ask for a mammogram via a second opinion from your GP practice. If OK, you will get a letter explaining their benign findings. If not OK, your doc or the hospital will contact you swiftly.

Step Two, If nothing, enjoy your life and crack on!

Step Three _ If not, deal with it then. The Warrior Gene is not confined to age.

You are so young and, it is unlikely to be anything sinister.

Alice x

Worriedasworriedcanbe

I’m still in extreme pain currently got ice held onto it isn’t helping keeps tingling and itching along with this extreme pain. My GP has finally gave me a referral for an MRI as I’m offering to pay which I don't mind for a peace of mind, I had to contact the practice manager and she apologised for the fact the doctors hadn't allowed it, but I'm glad I have one now. How are you? X

Worriedasworriedcanbe

part of me thinks that sometimes, but there has been cases known to go on this length some even a year, it’s horrible. I’m praying it’s not but the symptoms are worse and I think even my practice manager at my GP is worried as to why there’s isn’t an answer being found, it’s the fear of not knowing as I can’t fix it or have peace of mind x I don't only just think of IBC it's just hard when nothing else adds up to what it could be and most things like infection, abscess, milk duct problems have been ruled out