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Ibc or not?

8 REPLIES 8
Westmids
Member

Re: Ibc or not?

Hi lolly snores
I am so sorry you have been experiencing this. Believe me I know what you are going through. Since my last post I went to London to get a 3rd opinion with one of the UK's leading Breast specialists. I have since been reassured that my case was luckily just hormonal changes following breast feeding. I too was 39 at the time. Most changes are usually harmless but you have done the right thing to get them checked out.

If you are still concerned don't stop until you get the answers you need. If it takes 3 or 4 opinions then so be it. I did and am finally reassured.

Take care
lollysnores
Member

Re: Ibc or not?

Hi,

I'm really wondering how it went with you as I am experiencing so similar symptoms to yours.

I have 2 swollen lymph nodes aprx 5mm told to be normal after MRI and US

I had 5 days of nipple discharge back in january.

jan-feb got a horrible sinus infection and after that my lymph nodes in the neck are swollen with no signs of change. Then my body aches, leg, arm, all right side, right breast... etc

Last I had was CT neck and thorax, haven't gotten an answer.

Had MRI of brain... CT sinus several times...

all i am left with is this lymph nodes from 3mm to 5mm and the discharge and the pain i had, don't have anymore and some pink spots that also disappear...

And as you, I am being called a hypocondriac.

The oncologist I had been seing doesn't wanna take me in to a new appointment. But his collegue would.

I am going to the breast clinic for a new US check next week...

after that i'll make a new app with this other oncologist.

Have been experiencing hormonal changes etc... etc... endless...

 

I am 39 and live in Oslo.

Westmids
Member

Re: Ibc or not?

Still no answers nearly 5 months on. Still feeling poorly most days with pain in breast, it now looks rough round one side and feels thicker. I also noticed some slight pinkness and some hair follicles that look enlarged but am still being told it is fine. Don't know what else to do I am desperate for a diagnosis of something now. I am just so worried. Getting pain elsewhere in body too which is equally worrying me.
Westmids
Member

Re: Ibc or not?

Thanks for your reply roobe. I have had a further test which was a punch biopsy 2 weeks ago and that has again come back as negative. Just so frustrated with the whole thing as no better. Still lots of symptoms which are very worrying and no diagnosis. They say I have 2 dialated ducts but that's it. Also had a head, neck and spine scan which all came back clear. Obviously I am happy that it appears to be normal but something is not right. Just don't know what else to do to get this sorted out. They think I am mad as I keep going back and are now starting to get fed up of me. Soon they will tell me to stop going to them (the breast specialist that is). Don't know where to turn now....
roobee
Member

Re: Ibc or not?

Hi there

 

It took 6 months (now 6 years ago) for my IBC to be pinned down, so I know it is not easy to diagnose. If in doubt, ask for more tests, I guess.  

 

I had several apparently negative results from scans, fine needle aspirations etc (mine started off  looking like mastitis - greatly swollen breast but no lump as such) and they were pretty sure the last test was going to be negative as IBC is pretty rare. Fortunately they persisted and the last FNA found the culprit. 

 

I had no symptoms such as you describe (neck, flu-like) so can't comment on that at all.

I think you probably have to talk to them further  if you aren't happy with the answers so far... Sorry not to be more help, and very best wishes - I do hope it's nothing to worry about. 

Best wishes

 

 

 

 

 

Westmids
Member

Re: Ibc or not?

Hi again need some more advice. Had MRI came back negative but been told have 2 dilated ducts but nothing to worry about. I still have lymph glands under armpit that are swollen but been told they are benign. I asked if I could have a biopsy but they said no as they are normal. I asked how do you know and he said as he has done thousands and just knows. Still having constant ache in neck and feeling tired all the time, just soooo worried about it all. Been to,d to go back in 3 months now as nothing else they can see. they say it is not cancer in my breast. Obviously I am happy about that but still have no answers as to why my neck aches and have constant feeling of flu like symptoms which only started after this breat problem. Sooooscared they have got it all wrong. Any help or advice would be good
Westmids
Member

Re: Ibc or not?

Sweakymouse thanks for your reply. Had MRI, ultrasound and mammo and allsaying I have 2 ducts that are enlarged. They have told me that they don't look suspicious and nothing to worry about. They have also said that the lymph gland in my Rmpit looks normal on the ultrasound so don't need to biopsy it. The pain was bad in the beginning but is not really there anymobut only around the nipple area. They reckon it may be due to some blockage in the ducts but they csn't see any cancer. I have requested a further ultrasound to see if the swelling under my armpit has got any bigger or smaller. Still feel like I have no answers and am struggling to trust anyone. I have been assured tht theMiri woujab eve shown up anything sinister and all they could find was the 2 enlarged ducts. I still don't know whether is is good or bad. My breast is only slightly larger than the other one and again they say it is probably due to the ducts. My neck glands feel sore most days which is weird....Thedon't think think I need a biopsy of the ducts or the gland under my arm as it looked normal on the us. It's all one. If nightmare to me and 2 months on with no answers...
squeakymouse
Member

Re: Ibc or not?

Hi Westmids

So sorry you are going through all this and no-one has replied to your post yet. I wish I could tell you you don't have IBC but I can't. Can you talk to your doctor again and at least get them to tell you what they think it is?

Mine was IBC, but 14 months later I am still here, finished treatment and no sign of cancer. I wasn't breast feeding but my symptoms were pain, whole breast went swollen and hard, extensive red rash (on breast not around nipple) and orange peel skin. No nipple discharge. Also pain and swelling in glands under my arm on same side as breast. They found mine by ultrasound and physical exam, and two biopsies (one breast one lymph nodes underarm) came back positive. It didn't show up on mammogram. I had MRI but this was to check how extensive it was rather than for diagnosis. My MRI was two weeks after biopsy, hadn't heard about having to wait 6 weeks after a biopsy.

Squeakymouse xx

Westmids
Member

Ibc or not?

Hi just wondered if any of you guys can put my mind at ease at all. Long old story but short version here.
Mid may noticed slight redness on right breast and some green discharge lasted one day was bf at time. Week later had pain in ribs and change in nipple and areola colour difference from other one. Then came the pain and clear discharge so got referral to breast consultant. Had us and mammo all clear but said got dense breasts and was still bf so packed it in which was a month ago now. Wasn't happy with hisconclusion so asked second opinion. Had another us which was clear except one lymph gland in armpit raised measuring 0.6cm was told benign. Been told can't have MRI for another 2 weeks as had biopsy 4 weeks ago on upper part ofbreast which came clear but wasn't at the sight of where the problem is. Aparantly MRI needs to be 6 weeks after a biopsy. So now got 2 weeks to wait and am currently living in fear. I have terrible neck ache, feel like I have swollen glands all the time, rib pain, pain in my leg which I had an X-ray for as was so bad and was clear. Now gotfuzzy and dizzy head most days. I am 39 with a full life ahead with 2 young children and feel thatnever tone is on go slow and all the while I feel something is growing inside me and I can't do anything about it except wait. It is literally terrifying me. Current symptoms arerunny feeling in nipple, change in areola colour, sometimes pain, lymph node raised and constant neck ache. Nipple sometimes pulls in as if cold for no reason. Any ideas or thoughts would be great. Got no redness or thickness I can see or feel except under armpit, no orange peel look or swollen bits except the nipple itself looks a bit puffy but was told that is hormones.